Well, today is April 30, the last day of autism awareness month. And today is the 15th post I've made this month. Half of the 30 I had wanted to write. That's not too bad. I have to say I'm enjoying writing again and am not really ready to stop. Since autism never stops in our house, if you are game, I'd like to finish my "30 days" this year. If you don't mind reading more of my dribble in the month of May, I figure that I can get the other 15 days done by the end of May. Pretty decent goal for me. And a pretty busy month ahead, so plenty of stuff to write about.
Maybe this year I just really need to 'finish' something. You know? And in my mind, if I 'finish' 30 days of writing, I will have accomplished something. At the beginning of April, I talked about how I love puzzles and maybe one of the reasons is because it gives me such satisfaction to complete one. Same thing here. Not that I am ever done talking. {ha} But it's something. And with all of the uncertainty and unanswered questions, circling around and around again, figuratively chasing our tails to help Vicki, it helps me. With all of the tests recently {the upper endoscopy and colonoscopy}, it's beyond frustrating to me that we still really have no answers. And that's hard for me to swallow.
Some days it just hits me like a tidal wave. I'm always thinking about goals for Vicki, and what we need to focus on. And what I would do to be able to talk to Vicki about her own goals, and what she wants to focus on. Every time I think about that, I get a lump in my throat. Sometimes I just crave reassurance so much, from Vicki. Reassurance from her that I am advocating for her what she needs. That I am focusing on her goals. That I am thinking about what she wants and desires in life.
Vicki was crying last night. Quite a bit. And it rips my heart out every time. The sheer pain in her eyes. Is it physical pain? Is it sadness? Is it loneliness? God, I want to know. And I also don't want to know. You know?
I know that I sound like a broken record. But all I want for her is to be happy. To enjoy life. To feel loved. To feel safe. Isn't that what we all want? And I know it's not an easy task. Everyone climbs their own mountains every day.
Some days, though, I know Vicki is telling me things. She might squeeze my hand a little harder. She might let out a pelt of laughter and even though I don't know what's funny, I join in. Because her laughter is music to my soul. Every night when I tuck her in, she says, "Momma, wrap it around burrito." So, I tuck her in tight and give her a big squeeze. At that moment, I know she feels safe. And then there are moments when she looks at me. Like, really, looks at me. And I know this is stupid, but I have tears streaming down my face right now as I am thinking about those moments. She says more to me in those moments with her eyes that I could fill up on paper, that I could fill up with verbal conversations. I know it may sound corny. But she is telling me so much in the gaze, I never want to look away. It gives me goosebumps. It gives me hope. And it gives me peace. And it helps me to get up every day and climb my own mountain. Much love to you all. xoxo
Tuesday, April 30, 2019
Monday, April 29, 2019
Day 14. Year 2019
So, yeah, I started this post Friday morning. Better late than never, right? :) Hope you all had a great weekend, it was beautiful weather here in VA all weekend long. We were able to spend quite a bit of time outside, and I am so grateful for that. It's the little things that I used to take for granted that mean so much to me now. Like just going outside. It's not just transitioning to and from the car that is difficult for Vicki, it's pretty much every transition she has. Every time she goes from laying down to sitting up, from sitting up to standing up, from standing up to sitting down..... you get the picture. Every one of those moments is difficult for Vicki. You can see her struggling. Something as seemingly simple as saying "Let's go outside" can become an hour long fight to stand up and go outside. And then another fight to stay outside for 5 minutes. Some days we just don't have it in us to pick that fight, and it's easier to not ask at all. That makes me sad. But it's the truth.
Anyway, enough of the sad talk, this weekend we had some small victories with Vicki. So I am celebrating them. Vicki likes 'campfires' because she knows that she usually gets a yummy s'more at the end of the campfire. We were doing some spring yard cleanup and built a fire to burn the thousands of sticks we had. We were able to get Vicki to pick up a few sticks, 2 different times. She struggles with it, it takes a really long time, and it's hard for her to stop and start moving at times, but she did it. The rest of the day she spent sitting by the campfire watching YouTube Tasty videos on my phone. But, she was outside. And that meant we could all be outside. And that was amazing. She enjoyed chicken and homemade sweet potato chips charred in the fire, and of course, we had a few s'mores. We improvised a bit, I had no graham crackers, so we used girl scout samoa cookies as the sandwich portion with gooey marshmallow inside. Neither Vicki nor I was upset about the change. :) Ideally, someday I would like for Vicki to be able to remain outside and be reinforced enough just with family conversations. But this weekend, it was a wonderful start. Both Mark and I got to be outside together. And that was great. And Vicki smiled a few times and got to enjoy the fresh air. And that was great. And Ally got to pick up the thousand sticks minus the 2 stacks Vicki got. And that was really great.
Ok, so back to my post that I started on Friday: Let's talk about poop. Again.
One of the things I love about Vicki's GI doctor is that he does what he says he's going to do, and always in a timely fashion. And he has a wonderful bedside manner. In this world of technology and automated information and impersonal interactions, it's so refreshing. He likes to do things himself. He always calls me directly with results. It's never his nurse or his secretary. He always returns my phone calls. And he really appreciates the pictures I take, and the charts I make for him. He's easy to talk to and he's funny. Okay, enough of me singing the GI's praises... but sometimes it's so good to say something positive about someone. I do enough of complaining, Anyway, he said some of the biopsy results should be back by Friday, and sure enough, he called Thursday night around 7:30 to discuss them.
I wish I could be as positive about the results as I am about the doctor. It sounds awful... it's not like I was hoping for Vicki to have Crohn's Disease or that they would find something blatantly wrong. But I was hoping for answers. And, unfortunately, we struck out again. Well, not totally. Kind of ruling out things is good, but there isn't a whole lot left to question... One of the things we did discover is that Vicki's reflux is getting worse. Neither of us realized that. Apparently, the juncture where the esophagus meets the stomach is showing worsening of the reflux. We are going to switch her reflux medicine and see if that will help slow down, relieve, or improve the reflux. It's hard because we don't know how Vicki feels.
The GI was a little worried that Vicki might have eosinophil esophagitis. But biopsies showed no sign of that. So that's good. And as far as the colonoscopy, so far all of the tests/biopsies have come back normal. No evidence of inflammatory bowel disease, no evidence of celiac disease, no evidence of Crohn's disease, no evidence of ulcerative colitis, no candida, no fungus, no parasites. Enzymes that break down stuff are normal. The large intestine does have an increased number of lymphocytes, but we don't know the reason. And the one test that came back high before is still pending. So, what does this tell us? Not a whole lot. Vicki is still having issues with her poop. And we still are no closer to finding out why and how to help her. She is continuing to take her lactulose for constipation. And we will wait and see how things go over the next two weeks and how that 1 test comes back. The GI said there is a possibility that the Crohn's disease is hiding out in the section of bowel that they can't reach. If he ends up looking at that, that's a whole different kind of test, and it doesn't sound great. So we will wait on that. So, for now, things are still pretty shitty. The end.
I am going to go now and post this before I get busy again. Much love to you all. xoxo
Anyway, enough of the sad talk, this weekend we had some small victories with Vicki. So I am celebrating them. Vicki likes 'campfires' because she knows that she usually gets a yummy s'more at the end of the campfire. We were doing some spring yard cleanup and built a fire to burn the thousands of sticks we had. We were able to get Vicki to pick up a few sticks, 2 different times. She struggles with it, it takes a really long time, and it's hard for her to stop and start moving at times, but she did it. The rest of the day she spent sitting by the campfire watching YouTube Tasty videos on my phone. But, she was outside. And that meant we could all be outside. And that was amazing. She enjoyed chicken and homemade sweet potato chips charred in the fire, and of course, we had a few s'mores. We improvised a bit, I had no graham crackers, so we used girl scout samoa cookies as the sandwich portion with gooey marshmallow inside. Neither Vicki nor I was upset about the change. :) Ideally, someday I would like for Vicki to be able to remain outside and be reinforced enough just with family conversations. But this weekend, it was a wonderful start. Both Mark and I got to be outside together. And that was great. And Vicki smiled a few times and got to enjoy the fresh air. And that was great. And Ally got to pick up the thousand sticks minus the 2 stacks Vicki got. And that was really great.
Ok, so back to my post that I started on Friday: Let's talk about poop. Again.
One of the things I love about Vicki's GI doctor is that he does what he says he's going to do, and always in a timely fashion. And he has a wonderful bedside manner. In this world of technology and automated information and impersonal interactions, it's so refreshing. He likes to do things himself. He always calls me directly with results. It's never his nurse or his secretary. He always returns my phone calls. And he really appreciates the pictures I take, and the charts I make for him. He's easy to talk to and he's funny. Okay, enough of me singing the GI's praises... but sometimes it's so good to say something positive about someone. I do enough of complaining, Anyway, he said some of the biopsy results should be back by Friday, and sure enough, he called Thursday night around 7:30 to discuss them.
I wish I could be as positive about the results as I am about the doctor. It sounds awful... it's not like I was hoping for Vicki to have Crohn's Disease or that they would find something blatantly wrong. But I was hoping for answers. And, unfortunately, we struck out again. Well, not totally. Kind of ruling out things is good, but there isn't a whole lot left to question... One of the things we did discover is that Vicki's reflux is getting worse. Neither of us realized that. Apparently, the juncture where the esophagus meets the stomach is showing worsening of the reflux. We are going to switch her reflux medicine and see if that will help slow down, relieve, or improve the reflux. It's hard because we don't know how Vicki feels.
The GI was a little worried that Vicki might have eosinophil esophagitis. But biopsies showed no sign of that. So that's good. And as far as the colonoscopy, so far all of the tests/biopsies have come back normal. No evidence of inflammatory bowel disease, no evidence of celiac disease, no evidence of Crohn's disease, no evidence of ulcerative colitis, no candida, no fungus, no parasites. Enzymes that break down stuff are normal. The large intestine does have an increased number of lymphocytes, but we don't know the reason. And the one test that came back high before is still pending. So, what does this tell us? Not a whole lot. Vicki is still having issues with her poop. And we still are no closer to finding out why and how to help her. She is continuing to take her lactulose for constipation. And we will wait and see how things go over the next two weeks and how that 1 test comes back. The GI said there is a possibility that the Crohn's disease is hiding out in the section of bowel that they can't reach. If he ends up looking at that, that's a whole different kind of test, and it doesn't sound great. So we will wait on that. So, for now, things are still pretty shitty. The end.
I am going to go now and post this before I get busy again. Much love to you all. xoxo
Thursday, April 25, 2019
Day 13. Year 2019
I wanted to start off today's post with some positive news. Remember when I was talking about Vicki getting off the bus in the afternoon from school? And how last week {I thought/hoped} that because of a change in bus aides Vicki was struggling again and not getting off the bus? I was praying that was the case, and I think it was! When her regular bus aide came back to work on Tuesday, I held my breath for a second, and Vicki only hesitated for about 5 seconds then got up and off the bus. Phew!!!! Hopefully, that was indeed the issue, and because her routine was re-established it extinguished the behavior. Not that that is good for the future, because it's so important for her to learn to manage change and be able to push through it, but for now, for this moment, I let out a little sigh of relief. The crazy thing is... a 5-10 second hesitation with Vicki can feel like forever. Like I am caught in suspended animation. That hesitation could go either way. It could be nothing, or it could be that we are hunkered down for a long wait for her to transition. My family was obsessed with the TV show Psych. And waiting for Vicki to stand up reminds me of one of Shawn and Gus's catchphrases. I've heard it both ways. Yep. I have definitely seen Vicki's transitions go both ways. It could be nothing but a slight hesitation, or it could be hours on end. Luckily it went the first way this week.
I said that I wanted to talk about Vicki's and Ally's relationship a bit more. Don't you find it fascinating, to see the changes in sibling relationships and interactions over the years? It's especially fascinating to me to see how theirs has ebbed and flowed over the years. Relationships take work. On both parties parts. And with autism, it's very difficult for Vicki to establish certain relationships. One of the hardest things for me to talk about is relationships. Vicki nurtures and fosters her relationships just like anybody else would do, but it's different. But also the same. I absolutely hate answering social questions about friendships. Does Vicki have friends? Absolutely I know that Vicki has friends. And that she develops those relationships in her own way, to suit her needs. What is a friend? That's such an interesting question to me. How do you define your friendships? What does it mean to have a best friend? To have acquaintances? To see that changes in friends and relationships over the years. I could write so much about this. But I won't. I need to focus. Anyway, One thing that saddens me is that Vicki has never, and may never, ask to have a friend over. She has never been to a sleepover or had a friend sleepover here. She was in a "playgroup" when she was a baby, but did she ever ask for so-and-so to come over and play? No. If I write too much about this, I will start to cry. So I will leave it there. I just know that God knew exactly what our family needed. And he gave us Ally. He gave Joey Ally. He gave Vicki Ally. And yes, I believe that Ally is Vicki's best friend.
Vicki and Ally have a 3 year age difference between them. Vicki is Ally's big sister. Ally is Vicki's little sister. I am an only child, so I know nothing from personal experience about sibling interaction. I do know, however, that Vicki and Ally's relationship doesn't follow the 'norm'. But who cares. What I care about is how these 2 can get what they need from each other.
Ally was born right after Vicki was formally diagnosed with autism. At that time, Vicki was quite the escape artist, and in order for me to be able to nurse Ally, Mark had to build a half wall with a heavy pocket door with a lock at the entrance to the living room. All of the regular baby gates were child's play for Vicki. She could Houdini over any of them. Thankfully the door worked, at least for a while, so that I could keep an eye on Vicki and nurse Ally at the same time. Anyway, in the early years, {well, actually, it wasn't just the early years, it's been over all the years, but was definitely most prominent when Ally was younger} Vicki would push Ally down. Yes, I've heard that 'normal' siblings do this, but it was really hard with Vicki and Ally. Vicki would push Ally over as she was learning to walk. And, of course, Ally would cry. And Vicki would laugh. {Again, I'm sure this happens with other siblings, but, it was different with them}. Any time Vicki was around Ally and close to Ally, I was on edge. Especially if Vicki was 'off'' more than usual. More times than not if she reached out for Ally, it was to push her down. How does that foster a developing relationship at such a young age? Ally didn't understand why Vicki was pushing her down all the time. All Ally knew was that it hurt, and she was sad. And she couldn't play with her sister like she wanted to. And from a young age, Ally would try so hard to not cry, because that reaction always spurred further reactions from Vicki. And when you are hurting and your sister is laughing, how do you come to terms with that? Let me tell you, as an adult, I still have trouble with that.
Over the years, when Vicki would draw pictures of our family, Daddy and Mommy would always be super tall sticks, Vicki and Joey would be about the same medium size, and Ally was always a baby, crawling on the floor. Even when Ally started to grow up and get much taller, she was still the baby crawling on the floor in Vicki's eyes. {Heck, in my momma's eyes too!}.
Ally started getting older and wanted to play more. Joey and his dinosaurs were always close by to fill in for the pretend play that Ally sought out from Vicki, but was never really able to get. Oh we fostered parallel play, and we did have moments where they would all do something together, and I held onto those moments with everything I had. And I'm sure Joey and Ally did too. Things were very different though. And yes, I grieve for the moments that the girls never got together, but we celebrated the moments they did get. The little sister, as she was learning to read, tried to teach the big sister to read. And when I watch those moments, it's both heartbreaking and beautiful at the same time.
I have way more to say but want to get this posted now so I will finish up tomorrow. I will leave you with one of the birthday gifts Vicki gave to Ally this year. She colored a picture of the sisters Anna and Elsa from Frozen, and I had her give it to Ally as her birthday card. I wanted to have Vicki write on it, something like 'Happy Birthday to the best little sister in the world', but we haven't done that yet. Vicki has had more difficulty writing lately, and I want to catch her when she's not frustrated. Ally loved the picture. So, today I will leave you with a lyric clip from Frozen. And yes, I cried as I typed this thinking of Ally singing this to Vicki:
Do you wanna build a snowman?
Come on let's go and play.
I never see you anymore, come out the door
It's like you've gone away.
Vicki, please.
I know you're in there.
People are asking where you've been.
They say have courage and I'm trying to
I'm right out here for you, just let me in.
Much love to you. As always, thank you for reading. xoxo
I said that I wanted to talk about Vicki's and Ally's relationship a bit more. Don't you find it fascinating, to see the changes in sibling relationships and interactions over the years? It's especially fascinating to me to see how theirs has ebbed and flowed over the years. Relationships take work. On both parties parts. And with autism, it's very difficult for Vicki to establish certain relationships. One of the hardest things for me to talk about is relationships. Vicki nurtures and fosters her relationships just like anybody else would do, but it's different. But also the same. I absolutely hate answering social questions about friendships. Does Vicki have friends? Absolutely I know that Vicki has friends. And that she develops those relationships in her own way, to suit her needs. What is a friend? That's such an interesting question to me. How do you define your friendships? What does it mean to have a best friend? To have acquaintances? To see that changes in friends and relationships over the years. I could write so much about this. But I won't. I need to focus. Anyway, One thing that saddens me is that Vicki has never, and may never, ask to have a friend over. She has never been to a sleepover or had a friend sleepover here. She was in a "playgroup" when she was a baby, but did she ever ask for so-and-so to come over and play? No. If I write too much about this, I will start to cry. So I will leave it there. I just know that God knew exactly what our family needed. And he gave us Ally. He gave Joey Ally. He gave Vicki Ally. And yes, I believe that Ally is Vicki's best friend.
Vicki and Ally have a 3 year age difference between them. Vicki is Ally's big sister. Ally is Vicki's little sister. I am an only child, so I know nothing from personal experience about sibling interaction. I do know, however, that Vicki and Ally's relationship doesn't follow the 'norm'. But who cares. What I care about is how these 2 can get what they need from each other.
Ally was born right after Vicki was formally diagnosed with autism. At that time, Vicki was quite the escape artist, and in order for me to be able to nurse Ally, Mark had to build a half wall with a heavy pocket door with a lock at the entrance to the living room. All of the regular baby gates were child's play for Vicki. She could Houdini over any of them. Thankfully the door worked, at least for a while, so that I could keep an eye on Vicki and nurse Ally at the same time. Anyway, in the early years, {well, actually, it wasn't just the early years, it's been over all the years, but was definitely most prominent when Ally was younger} Vicki would push Ally down. Yes, I've heard that 'normal' siblings do this, but it was really hard with Vicki and Ally. Vicki would push Ally over as she was learning to walk. And, of course, Ally would cry. And Vicki would laugh. {Again, I'm sure this happens with other siblings, but, it was different with them}. Any time Vicki was around Ally and close to Ally, I was on edge. Especially if Vicki was 'off'' more than usual. More times than not if she reached out for Ally, it was to push her down. How does that foster a developing relationship at such a young age? Ally didn't understand why Vicki was pushing her down all the time. All Ally knew was that it hurt, and she was sad. And she couldn't play with her sister like she wanted to. And from a young age, Ally would try so hard to not cry, because that reaction always spurred further reactions from Vicki. And when you are hurting and your sister is laughing, how do you come to terms with that? Let me tell you, as an adult, I still have trouble with that.
Over the years, when Vicki would draw pictures of our family, Daddy and Mommy would always be super tall sticks, Vicki and Joey would be about the same medium size, and Ally was always a baby, crawling on the floor. Even when Ally started to grow up and get much taller, she was still the baby crawling on the floor in Vicki's eyes. {Heck, in my momma's eyes too!}.
Ally started getting older and wanted to play more. Joey and his dinosaurs were always close by to fill in for the pretend play that Ally sought out from Vicki, but was never really able to get. Oh we fostered parallel play, and we did have moments where they would all do something together, and I held onto those moments with everything I had. And I'm sure Joey and Ally did too. Things were very different though. And yes, I grieve for the moments that the girls never got together, but we celebrated the moments they did get. The little sister, as she was learning to read, tried to teach the big sister to read. And when I watch those moments, it's both heartbreaking and beautiful at the same time.
I have way more to say but want to get this posted now so I will finish up tomorrow. I will leave you with one of the birthday gifts Vicki gave to Ally this year. She colored a picture of the sisters Anna and Elsa from Frozen, and I had her give it to Ally as her birthday card. I wanted to have Vicki write on it, something like 'Happy Birthday to the best little sister in the world', but we haven't done that yet. Vicki has had more difficulty writing lately, and I want to catch her when she's not frustrated. Ally loved the picture. So, today I will leave you with a lyric clip from Frozen. And yes, I cried as I typed this thinking of Ally singing this to Vicki:
Do you wanna build a snowman?
Come on let's go and play.
I never see you anymore, come out the door
It's like you've gone away.
Vicki, please.
I know you're in there.
People are asking where you've been.
They say have courage and I'm trying to
I'm right out here for you, just let me in.
Much love to you. As always, thank you for reading. xoxo
Monday, April 22, 2019
Day 12. Year 2019
Good morning. Sometimes I think about what I want to write randomly throughout the day. But then when I sit down, that stuff just doesn't want to come out. Some days I just want to be super honest. Today's one of those days.
I know I should be {and I am} grateful for all of the blessings in my life. And I should focus on the positive {and I do, or at least I try to}. But some days, you are just sad, you know? And maybe feel sorry for yourself a little too much. Have a full-fledged pity party for yourself. And I couldn't shake that this weekend. So last night I went to bed, thinking,.... It's a new week, a fresh start, get your head back in the game.
I woke up this morning, grateful as always, to see another day. I may have a few more kinks in my body as it ages, {ugg, I slept on my neck wrong the other night and still can't turn my head without it hurting, and ugg, stupid sciatica acting up, my whole left side butt to foot hurts, and boo, my stupid right knee, and leg from dislocations and my blood clot 2 years ago} but nothing that a few ice packs {well, a whole ice bath would be nice}, a bit of time just for myself, and a fresh cup of coffee can't improve.
I thought about how lucky I am, Mark and I have 3 amazing kiddos. I love my family and I love my life. And there is nothing more fulfilling to me than being their mom and being Mark's wife. Easter was a bit quieter this year. And maybe that's part of what got me sad. We are a very close-knit family. We do a lot of stuff together. And Mark and I have always been grateful that the kids seem to want to hang around us and do things together. Vicki has always liked the number 5. She counts a lot of stuff and will ask for 5 of certain things all the time. For example, 5 grapes... 5 pieces of sweet and sour chicken from the Chinese place we order from, 5 meatballs on top of her spaghetti. I always wonder if she loves the number 5 so much because it brings her comfort. And makes her feel safe. Why? Because when we do anything, go anywhere, she always says, "Mommy, Daddy, Joey, Vicki, Ally". 5 people. Her family. I like to think we make her feel safe and secure.
I knew this year would be a hard year because 5 became 4 for a lot of things. As much as I want to slow down the process, I can't stop it. And my babies are growing up. It seems like it was just last year that we were making cute Easter crafts, counting down the days until we could color eggs and go see the Easter Bunny, attend an Easter egg hunt... And this year Joe started college, and he's not here for a lot of things. And I miss him. And Mark misses him. And Ally misses him. And Vicki, she misses him. The last few years have been hard and it was difficult to get Vicki in and out of the car, so I bought Joe an Easter Bunny costume, and he dressed up, hopped around, and took pictures with Vicki and Ally. He brought a lot of joy and smiles to a lot of people wearing that costume. He would stand at the bottom of our driveway and wave at the cars driving by. So many people would honk and wave. They would circle back around smiling and laughing, and many people would get out and ask him for a selfie. People walking their dogs would stop and ask for a picture with the Easter Bunny. But this year, the bunny was conspicuously missing. Joe has finals next week, and it just didn't make sense for him to come home for Easter this year. All of his friends were staying at school too, so at least he wasn't alone. I packed up his Easter basket and sent it in the mail to him. We gave serious thought to driving up to school and have Mark knock on his dorm room door in the bunny suit. But we didn't. We loosened our grip a little bit and let him grow up some. Maybe that's why I was sad for some of the weekend. I've done pretty good with him being away at college, but this was our first big holiday without him. It happens to everyone. I just wasn't quite ready.
But it's okay. The girls and I tried out a different way to color Easter eggs, with rice. Vicki actually did well adapting to the change, and for a minute she enjoyed shaking the bag of rice up with the egg in it. The eggs turned out super cute, had a speckled look to them, and it made for very easy clean up. And Ally put on some bunny ears and hid eggs outside for Vicki to find this year. One thing I've loved seeing is the deepening and maturing relationship that Ally and Vicki have come to throughout this transition year. {Tomorrow I will focus on that newly deepening sister bond}.
So, I'm sure Joe not being home for Easter had some effect on my sad mood. But, besides that, sometimes it's not anything in particular. You know? It's not a particularly difficult season right now with Vicki. Oh, things and hard and exhausting, don't get me wrong. But there are some very specific times I can look back over the years and think, oh, my God, how did we get through that? Like at the worst of Vicki's transitions, when every single transition was a fight with Mark, where I had to call the sheriff's department and ask about how to make sure we weren't called in for trying to abduct Vicki. That's how scary it was. No, I still can't get Vicki into and out of the car without Mark. And that's tremendously difficult on all of us. And we never know exactly how long it will take to get her out of the car, or how much of a fight it will be. And we still really can't "do anything" "normal", whatever that is. We have to think and plan and trade places and make sacrifices for things that many people don't even think about. And another time, when I was standing with Vicki in the bathroom before she went to bed, for 2-3 hours at a time because she couldn't move. That was hard. And exhausting. And the years when I had to clean her sheets up to 2 x a day, and her floors, and her. That was hard. Do all of these things still happen? Absolutely. But, thankfully, not with as much frequency. So I get a break occasionally.
So, why? Why are there some times that I feel such overwhelming sadness? Mark said it best the other day when we were talking about it. Baby, Vicki is almost 17. And that's all he had to say. Because he was absolutely right. She's almost 17. And as I talk about our kids growing up and the dynamics of our family changing, it's always in the back of my mind. She's almost 17. That means she's almost 18. That means 21 is just around the corner. I need more time. We need more time. She's almost 17. And so many of the things that I just talked about are still occurring. We've spent countless hours researching, countless hours at doctors and therapists, a shit load of money that we don't have, and I just feel like I need more of all of it. Because I'm not helping Vicki enough. Because we still can't just get in the car and get out somewhere on a whim. She can't get up in the morning and get ready by herself. She still has accidents so many times per week. The other day was a particularly difficult accident in the living room, and after it was all over and cleaned up, Mark asked me if I was ok. And then he was like, of course not. Why would I be ok? She is almost 17. And it makes me so sad for her, and for me, and for all of us. And I know no one is to blame. But it's hard not to place that blame on yourself.
We go through all of the tests and procedures and after enduring a particularly hard colonoscopy prep and post-op, I guess in the back of my mind I still wish... oh, this will do it. We will find out what is wrong, and we can fix it for Vicki. And then this morning after taking some time for myself, drinking some coffee, thinking about being positive and everything that I was going to accomplish this brand new week.... I go back upstairs to get Vicki up for school. (I have a monitor that I keep with me, that projects on my phone, so I can hear and see Vicki at night in her room). But I can't smell. And sometimes, you can't smell something until you go up the stairs into the hallway by her room. And she never called out for me or said she had to go or moved at all under the covers. And yet, there was another accident. And yes, some days I have a pity party for myself. Some days it's hard to get that positive outlook focused and ready, but I was doing just that this morning. Until I smelled it. And then, it's like, all the wind goes out of my sail. And all my positivity and plans go up in smoke.
Don 't worry. I'm pragmatic about things. I focus on what needs to be done. I was able to clean up her room, and her sheets, and her, and take out the garbage and open the windows. And I got her ready for school, and she got on the bus. And yes, my positivity took a hit for the day, and I let a little sadness creep back in. And that's not what I had planned to do on a Monday morning. But, we all make it through. And it's ok to get frustrated and sad. And I give myself permission to grieve and mourn. I know that sounds strange. But grief comes in many different forms and waves. I rode this one. And I got up and dusted myself off. Because that's all any of us can do. And then I adjusted my to-do list, thought about things I am grateful for again, and allowed myself another cup of coffee.
PS. Number 1 on my grateful list right now? This. The opportunity to self-reflect and self-analyze. And let myself feel. Thank you for reading. Thank you for listening. And I wish all of you the best anytime you have to pick yourself up and dust yourself off. Love you all. xoxo
I know I should be {and I am} grateful for all of the blessings in my life. And I should focus on the positive {and I do, or at least I try to}. But some days, you are just sad, you know? And maybe feel sorry for yourself a little too much. Have a full-fledged pity party for yourself. And I couldn't shake that this weekend. So last night I went to bed, thinking,.... It's a new week, a fresh start, get your head back in the game.
I woke up this morning, grateful as always, to see another day. I may have a few more kinks in my body as it ages, {ugg, I slept on my neck wrong the other night and still can't turn my head without it hurting, and ugg, stupid sciatica acting up, my whole left side butt to foot hurts, and boo, my stupid right knee, and leg from dislocations and my blood clot 2 years ago} but nothing that a few ice packs {well, a whole ice bath would be nice}, a bit of time just for myself, and a fresh cup of coffee can't improve.
I thought about how lucky I am, Mark and I have 3 amazing kiddos. I love my family and I love my life. And there is nothing more fulfilling to me than being their mom and being Mark's wife. Easter was a bit quieter this year. And maybe that's part of what got me sad. We are a very close-knit family. We do a lot of stuff together. And Mark and I have always been grateful that the kids seem to want to hang around us and do things together. Vicki has always liked the number 5. She counts a lot of stuff and will ask for 5 of certain things all the time. For example, 5 grapes... 5 pieces of sweet and sour chicken from the Chinese place we order from, 5 meatballs on top of her spaghetti. I always wonder if she loves the number 5 so much because it brings her comfort. And makes her feel safe. Why? Because when we do anything, go anywhere, she always says, "Mommy, Daddy, Joey, Vicki, Ally". 5 people. Her family. I like to think we make her feel safe and secure.
I knew this year would be a hard year because 5 became 4 for a lot of things. As much as I want to slow down the process, I can't stop it. And my babies are growing up. It seems like it was just last year that we were making cute Easter crafts, counting down the days until we could color eggs and go see the Easter Bunny, attend an Easter egg hunt... And this year Joe started college, and he's not here for a lot of things. And I miss him. And Mark misses him. And Ally misses him. And Vicki, she misses him. The last few years have been hard and it was difficult to get Vicki in and out of the car, so I bought Joe an Easter Bunny costume, and he dressed up, hopped around, and took pictures with Vicki and Ally. He brought a lot of joy and smiles to a lot of people wearing that costume. He would stand at the bottom of our driveway and wave at the cars driving by. So many people would honk and wave. They would circle back around smiling and laughing, and many people would get out and ask him for a selfie. People walking their dogs would stop and ask for a picture with the Easter Bunny. But this year, the bunny was conspicuously missing. Joe has finals next week, and it just didn't make sense for him to come home for Easter this year. All of his friends were staying at school too, so at least he wasn't alone. I packed up his Easter basket and sent it in the mail to him. We gave serious thought to driving up to school and have Mark knock on his dorm room door in the bunny suit. But we didn't. We loosened our grip a little bit and let him grow up some. Maybe that's why I was sad for some of the weekend. I've done pretty good with him being away at college, but this was our first big holiday without him. It happens to everyone. I just wasn't quite ready.
But it's okay. The girls and I tried out a different way to color Easter eggs, with rice. Vicki actually did well adapting to the change, and for a minute she enjoyed shaking the bag of rice up with the egg in it. The eggs turned out super cute, had a speckled look to them, and it made for very easy clean up. And Ally put on some bunny ears and hid eggs outside for Vicki to find this year. One thing I've loved seeing is the deepening and maturing relationship that Ally and Vicki have come to throughout this transition year. {Tomorrow I will focus on that newly deepening sister bond}.
So, I'm sure Joe not being home for Easter had some effect on my sad mood. But, besides that, sometimes it's not anything in particular. You know? It's not a particularly difficult season right now with Vicki. Oh, things and hard and exhausting, don't get me wrong. But there are some very specific times I can look back over the years and think, oh, my God, how did we get through that? Like at the worst of Vicki's transitions, when every single transition was a fight with Mark, where I had to call the sheriff's department and ask about how to make sure we weren't called in for trying to abduct Vicki. That's how scary it was. No, I still can't get Vicki into and out of the car without Mark. And that's tremendously difficult on all of us. And we never know exactly how long it will take to get her out of the car, or how much of a fight it will be. And we still really can't "do anything" "normal", whatever that is. We have to think and plan and trade places and make sacrifices for things that many people don't even think about. And another time, when I was standing with Vicki in the bathroom before she went to bed, for 2-3 hours at a time because she couldn't move. That was hard. And exhausting. And the years when I had to clean her sheets up to 2 x a day, and her floors, and her. That was hard. Do all of these things still happen? Absolutely. But, thankfully, not with as much frequency. So I get a break occasionally.
So, why? Why are there some times that I feel such overwhelming sadness? Mark said it best the other day when we were talking about it. Baby, Vicki is almost 17. And that's all he had to say. Because he was absolutely right. She's almost 17. And as I talk about our kids growing up and the dynamics of our family changing, it's always in the back of my mind. She's almost 17. That means she's almost 18. That means 21 is just around the corner. I need more time. We need more time. She's almost 17. And so many of the things that I just talked about are still occurring. We've spent countless hours researching, countless hours at doctors and therapists, a shit load of money that we don't have, and I just feel like I need more of all of it. Because I'm not helping Vicki enough. Because we still can't just get in the car and get out somewhere on a whim. She can't get up in the morning and get ready by herself. She still has accidents so many times per week. The other day was a particularly difficult accident in the living room, and after it was all over and cleaned up, Mark asked me if I was ok. And then he was like, of course not. Why would I be ok? She is almost 17. And it makes me so sad for her, and for me, and for all of us. And I know no one is to blame. But it's hard not to place that blame on yourself.
We go through all of the tests and procedures and after enduring a particularly hard colonoscopy prep and post-op, I guess in the back of my mind I still wish... oh, this will do it. We will find out what is wrong, and we can fix it for Vicki. And then this morning after taking some time for myself, drinking some coffee, thinking about being positive and everything that I was going to accomplish this brand new week.... I go back upstairs to get Vicki up for school. (I have a monitor that I keep with me, that projects on my phone, so I can hear and see Vicki at night in her room). But I can't smell. And sometimes, you can't smell something until you go up the stairs into the hallway by her room. And she never called out for me or said she had to go or moved at all under the covers. And yet, there was another accident. And yes, some days I have a pity party for myself. Some days it's hard to get that positive outlook focused and ready, but I was doing just that this morning. Until I smelled it. And then, it's like, all the wind goes out of my sail. And all my positivity and plans go up in smoke.
Don 't worry. I'm pragmatic about things. I focus on what needs to be done. I was able to clean up her room, and her sheets, and her, and take out the garbage and open the windows. And I got her ready for school, and she got on the bus. And yes, my positivity took a hit for the day, and I let a little sadness creep back in. And that's not what I had planned to do on a Monday morning. But, we all make it through. And it's ok to get frustrated and sad. And I give myself permission to grieve and mourn. I know that sounds strange. But grief comes in many different forms and waves. I rode this one. And I got up and dusted myself off. Because that's all any of us can do. And then I adjusted my to-do list, thought about things I am grateful for again, and allowed myself another cup of coffee.
PS. Number 1 on my grateful list right now? This. The opportunity to self-reflect and self-analyze. And let myself feel. Thank you for reading. Thank you for listening. And I wish all of you the best anytime you have to pick yourself up and dust yourself off. Love you all. xoxo
Friday, April 19, 2019
Day 11. Year 2019
It's amazing how tired going to doctors and sitting at hospitals make you. I didn't even have the procedure, and I've been exhausted for the past 2 days. All of the prep work and planning and lack of sleep and worrying. After a big day at a doctor with Vicki, it kind of feels to me like that exhaustion you get after opening presents on Christmas morning, or after a big event you were preparing for. The adrenaline seeps out of your body and you are left feeling rather lethargic and just done. That's me today. I can't imagine how Vicki feels. Well, I kind of can, because she stayed home from school today {she looked absolutely depleted last night and when I asked her about school today, she very adamantly proclaimed, "No school on Friday. No school. Vicki rest and relax" - which is what she says when she doesn't want to get out of bed. So that's what she did today. She rested and relaxed. She still looks exhausted, but hopefully, we will have a nice calm weekend at home. Going to color Easter eggs tomorrow {thinking about trying a new way - with dye and rice this year - we shall see how that goes}. I have the old stand by PAAS egg coloring kit just in case.
We should get the results of all of the biopsies the GI took in about a week, to a week and a half. And then, crossing my fingers, hope we find something that we can treat and help Vicki feel better. I never want to hope for something bad. But I also hate putting her through all kinds of tests and procedures and have the end game be - well, everything looks normal, who knows what's going on. Come back in 6 months and we'll see how she's doing.
You know how I talked the other day about how difficult it is to have someone else get Vicki up and ready in the morning? In all fairness, there really has been a chance to try something/someone different for quite a while now. And, although this may sound bad because I know I should try to decrease some of the load on me, all the while trying to help Vicki gain more independence and get used to different things... it's also kind of 'easy' when we have a system that works. Sometimes the OCD and the sameness of some routines actually just lessens the burden of difficult behaviors and enables us to get Vicki to do some things that have been a struggle... such as get on the bus, go to school, etc... It's all about perspective. Anyway, I've had the opportunity twice in the last 2 weeks to have help in the morning, when Vicki didn't have to go to school. So, we tried it again. We took a portion of her morning routine and switched out people. And, although it was really hard the first time, the second time it went a bit better even though it took a long time. And I am grateful. You know? To be able to step away for a few minutes. And I know it's good for Vicki. But then, today, it's as if Vicki has already tried to create a new routine. And although some of that is good, it's also very, very bad. Because for the most part, I can't get help at the time I would need to get Vicki up in the mornings. And things get slower, and she reacts differently to different people. And, she establishes routines so quickly. So, what was working for me with Vicki before, now has been 'messed with' and it's no longer working as well. It's all perspective. What needs to happen when and how difficult it is going to be. So, when Vicki starts not being able to move through a specific step in her morning routine because she just started a new routine that includes that person in that environment.... you can see where the difficulty lies. If that person can't come at that time, which is usually the case, then we can no longer move through the morning routine in a timely fashion, and then there are delays with the bus... and then she starts refusing other things.... It's really hard to know what to do.
I'll give you another example. As I've said before, Vicki takes a special needs bus to a private day school about 45 minutes away. She has her normal bus driver and normal aide. She is used to the routine. She is used to them in that environment. From August until March, Vicki had to use a wheelchair because of her broken leg. So she used the bus lift with her wheelchair. Before she broke her leg, we had struggled with getting off the bus, but we had found something that was working... I would hand up my phone to Vicki's aide with a minute timer on it. When it would go off, she would get up. It took us a long time to find the 'thing' that worked with Vicki. And then she broke her leg. And she used the wheelchair lift. This school year we had a new aide with the bus driver. And she had only worked with Vicki using the lift. When Vicki got the last of her casts/boots/air casts off, I had posted on my fb page, how Vicki just stopped cold turkey and started walking again, even though we had been trying to fade the wheelchair for 2 months prior to that.
The first day she walked on the bus again I was so nervous thinking we would have to start with the timer to get off the bus again. But, amazingly, we didn't. Vicki had established a new routine with her aide, that didn't include the timer delay we had from the year before. It's all Vicki's comfort level, the environment, the people, and the really hard part... it could be something so insignificant that that person does or says that flips the switch for Vicki that allows her to complete the transition. And after that first day walking again, I held my breathe. And that whole week she transitioned beautifully to and from the bus. And then the next week, and the next. And I let out a sigh of relief. Fast forward to this week, it was spring break week for our local school, but not Vicki's. The bus driver and aide that Vicki was used to had the week off. And it was a different bus driver and aide on Monday. And I held my breath again. In the back of my head, I was preparing. She got on the bus ok, but I could tell she was thrown for a loop and she seemed very anxious and uncomfortable. Then the difficult transition off the bus at the end of the day... I hadn't had to use the timer since before she broke her leg with a different aide. But I could tell, there was hesitation. And I can just tell with Vicki- sometimes it's just her body language. But I can tell when she is hunkered down and isn't going to move. This was one of those times. So, even though I didn't want to, I brought back the timer. It didn't work. I tried some of the other tactics/plans we have in our little toolbox of behavior modifications. Nope. Nothing. After 15 minutes, she finally got off the bus. Not as long as it could have been, definitely, but not good. And I spoke with her teachers and her behavioral therapists, and we discussed more strategies in case it happened again. And it did. On Tuesday. And the strategies didn't work. But again she got up from her seat and got off in under 15 minutes. On her own terms. And oh, how we wish we knew what that term was. She hasn't been back to school since because of the medical issues... and then next Monday I'm not sure what team will be on her bus. Were the behaviors of those 2 days enough to create a new routine that will be hard to break? Or will the hesitation magically go away? I know 15 minutes doesn't sound like a lot of time. NBD right? It is though. It's a very big deal for Vicki. Because the bus can't stay forever. And 15 minutes can easily turn into 45 minutes. Then an hour, or 2. I know I've mentioned before we've waited for 8 hours before for a transition {not with the bus, but with our van}. It's stressful. Definitely. And can become very quickly something that could end her successful transitions on the school bus. It's like dominos falling. One thing changes, that sets in motion another, and another, and before you know it, you look back and think, how can we put it back together again?
I'm going to head out now before we lose power if another storm comes through. Sorry, my writing is so sporadic and all over the place. I suppose my mind is like a set of dominos too. Once you knock the first one down, I just keep going... :) Much love to you all. xoxo
We should get the results of all of the biopsies the GI took in about a week, to a week and a half. And then, crossing my fingers, hope we find something that we can treat and help Vicki feel better. I never want to hope for something bad. But I also hate putting her through all kinds of tests and procedures and have the end game be - well, everything looks normal, who knows what's going on. Come back in 6 months and we'll see how she's doing.
You know how I talked the other day about how difficult it is to have someone else get Vicki up and ready in the morning? In all fairness, there really has been a chance to try something/someone different for quite a while now. And, although this may sound bad because I know I should try to decrease some of the load on me, all the while trying to help Vicki gain more independence and get used to different things... it's also kind of 'easy' when we have a system that works. Sometimes the OCD and the sameness of some routines actually just lessens the burden of difficult behaviors and enables us to get Vicki to do some things that have been a struggle... such as get on the bus, go to school, etc... It's all about perspective. Anyway, I've had the opportunity twice in the last 2 weeks to have help in the morning, when Vicki didn't have to go to school. So, we tried it again. We took a portion of her morning routine and switched out people. And, although it was really hard the first time, the second time it went a bit better even though it took a long time. And I am grateful. You know? To be able to step away for a few minutes. And I know it's good for Vicki. But then, today, it's as if Vicki has already tried to create a new routine. And although some of that is good, it's also very, very bad. Because for the most part, I can't get help at the time I would need to get Vicki up in the mornings. And things get slower, and she reacts differently to different people. And, she establishes routines so quickly. So, what was working for me with Vicki before, now has been 'messed with' and it's no longer working as well. It's all perspective. What needs to happen when and how difficult it is going to be. So, when Vicki starts not being able to move through a specific step in her morning routine because she just started a new routine that includes that person in that environment.... you can see where the difficulty lies. If that person can't come at that time, which is usually the case, then we can no longer move through the morning routine in a timely fashion, and then there are delays with the bus... and then she starts refusing other things.... It's really hard to know what to do.
I'll give you another example. As I've said before, Vicki takes a special needs bus to a private day school about 45 minutes away. She has her normal bus driver and normal aide. She is used to the routine. She is used to them in that environment. From August until March, Vicki had to use a wheelchair because of her broken leg. So she used the bus lift with her wheelchair. Before she broke her leg, we had struggled with getting off the bus, but we had found something that was working... I would hand up my phone to Vicki's aide with a minute timer on it. When it would go off, she would get up. It took us a long time to find the 'thing' that worked with Vicki. And then she broke her leg. And she used the wheelchair lift. This school year we had a new aide with the bus driver. And she had only worked with Vicki using the lift. When Vicki got the last of her casts/boots/air casts off, I had posted on my fb page, how Vicki just stopped cold turkey and started walking again, even though we had been trying to fade the wheelchair for 2 months prior to that.
The first day she walked on the bus again I was so nervous thinking we would have to start with the timer to get off the bus again. But, amazingly, we didn't. Vicki had established a new routine with her aide, that didn't include the timer delay we had from the year before. It's all Vicki's comfort level, the environment, the people, and the really hard part... it could be something so insignificant that that person does or says that flips the switch for Vicki that allows her to complete the transition. And after that first day walking again, I held my breathe. And that whole week she transitioned beautifully to and from the bus. And then the next week, and the next. And I let out a sigh of relief. Fast forward to this week, it was spring break week for our local school, but not Vicki's. The bus driver and aide that Vicki was used to had the week off. And it was a different bus driver and aide on Monday. And I held my breath again. In the back of my head, I was preparing. She got on the bus ok, but I could tell she was thrown for a loop and she seemed very anxious and uncomfortable. Then the difficult transition off the bus at the end of the day... I hadn't had to use the timer since before she broke her leg with a different aide. But I could tell, there was hesitation. And I can just tell with Vicki- sometimes it's just her body language. But I can tell when she is hunkered down and isn't going to move. This was one of those times. So, even though I didn't want to, I brought back the timer. It didn't work. I tried some of the other tactics/plans we have in our little toolbox of behavior modifications. Nope. Nothing. After 15 minutes, she finally got off the bus. Not as long as it could have been, definitely, but not good. And I spoke with her teachers and her behavioral therapists, and we discussed more strategies in case it happened again. And it did. On Tuesday. And the strategies didn't work. But again she got up from her seat and got off in under 15 minutes. On her own terms. And oh, how we wish we knew what that term was. She hasn't been back to school since because of the medical issues... and then next Monday I'm not sure what team will be on her bus. Were the behaviors of those 2 days enough to create a new routine that will be hard to break? Or will the hesitation magically go away? I know 15 minutes doesn't sound like a lot of time. NBD right? It is though. It's a very big deal for Vicki. Because the bus can't stay forever. And 15 minutes can easily turn into 45 minutes. Then an hour, or 2. I know I've mentioned before we've waited for 8 hours before for a transition {not with the bus, but with our van}. It's stressful. Definitely. And can become very quickly something that could end her successful transitions on the school bus. It's like dominos falling. One thing changes, that sets in motion another, and another, and before you know it, you look back and think, how can we put it back together again?
I'm going to head out now before we lose power if another storm comes through. Sorry, my writing is so sporadic and all over the place. I suppose my mind is like a set of dominos too. Once you knock the first one down, I just keep going... :) Much love to you all. xoxo
Thursday, April 18, 2019
Day 10. Year 2019
Changing gears again this morning. Remember on Day 4 this year when I posted about poop? Thought I'd do a crappy follow-up to it. I had talked about being the coolest chemist when I was collecting her stool samples. The most recent stool sample that we had collected showed some abnormalities and Vicki's GI called me the other day to talk about it. We've done the same stool samples in the past, and they had been negative. This time a few the tests came back {for those of you who are poop connoisseurs her calprotectin was significantly elevated, along with a few others} not so great that raised concerns again for both Crohn's Disease and ulcerative colitis. So, the GI wanted to schedule a sedated colonoscopy and upper endoscopy as soon as we could. Fast forward to today. Today's the day.
Vicki has had 2 upper endoscopies done before with biopsies taken to keep tabs on her reflux and check out other issues. She has never had a colonoscopy done before. He decided he wanted to do both at the same time, to lessen the number of times she has to be sedated {because we also have a sedated MRI looming on the horizon}. So, in the past 2 days, I've raced around trying to get things scheduled and taken care of. Not only prepping the insurance and pre-op stuff with nursing and the doctor by phone, but also making sure I canceled all of the other services she gets on a daily basis and coordinated Mark's work schedule. It's crazy how many calls I have to make to get that done. Anyway.
I had to keep Vicki home from school yesterday to do the prep for the colonoscopy. I was really worried about it. And, in true Vicki fashion, she rocked it. I talk a lot about how difficult things are when dealing with change. One of the exceptions, it seems, is when we have to do stuff with doctors. I know deep down that Vicki knows that doctors are trying very hard to help her feel better. I know she feels crappy a lot. And when we talk to her about doctors and hospitals, it's like a switch is flipped in her head, and she can do the things that are different. She knows the name of her GI doctor. That's how much we see him. She will say "belly hurt, Dr. ....... please". And it breaks my heart and makes me so proud at the same time.
So, we did the colonoscopy clean-out yesterday. She rocked not having her "yogurt medicine" in the morning. {Usually, I give her the omeprazole - her reflux medicine, mixed in yogurt before she gets in the shower}. She was able to move on when I told her it was because we had to do different medicine for the doctor. She knows that when we have to drink Gatorade, she wears a diaper, and she went and got a diaper out. We couldn't do her applesauce medicine {she can't swallow pills, so I crush them, or open capsules, and mix them with applesauce}. She was able to take her clear liquid Keppra and Zoloft though. But she couldn't have her normal breakfast, so I made yellow jello and apple juice the most exciting thing in the world. And she did amazing. Then we started the Gatorade/Miralax clean-out. 8 oz every 30 minutes. And she rocked that. I don't think she quite understood why she couldn't eat though, and I felt really bad. She kept asking for dinner. I offered her a few clear liquid choices but she got mad. I would have to. Eventually, she asked for a popsicle and resigned herself to that. We were up really late last night because it took a long time for the magic potion to start working. She will never tell me when she has to go to the bathroom when she is doing a clean-out, so I have to watch her really close for signs and try to take her at appropriate times. She refuses to get up a lot, so it's a bit of a battle. But we didn't have any accidents last night or this morning so I will call that a win.
I have to run now though to get her up, we have to be at the hospital pretty early today. If you could just keep Vicki in your thoughts today, I would appreciate it. Anytime she gets anesthesia and has a procedure done, I get nervous. I will post later to let you all know how it went. I hope that the doctor is able to find out the cause of the shitty issues she is having, and we can put a plan together to help her. I would love for Vicki to not have to ask for her GI doctor because her belly hurts. Much love to you all. xoxo
Vicki has had 2 upper endoscopies done before with biopsies taken to keep tabs on her reflux and check out other issues. She has never had a colonoscopy done before. He decided he wanted to do both at the same time, to lessen the number of times she has to be sedated {because we also have a sedated MRI looming on the horizon}. So, in the past 2 days, I've raced around trying to get things scheduled and taken care of. Not only prepping the insurance and pre-op stuff with nursing and the doctor by phone, but also making sure I canceled all of the other services she gets on a daily basis and coordinated Mark's work schedule. It's crazy how many calls I have to make to get that done. Anyway.
I had to keep Vicki home from school yesterday to do the prep for the colonoscopy. I was really worried about it. And, in true Vicki fashion, she rocked it. I talk a lot about how difficult things are when dealing with change. One of the exceptions, it seems, is when we have to do stuff with doctors. I know deep down that Vicki knows that doctors are trying very hard to help her feel better. I know she feels crappy a lot. And when we talk to her about doctors and hospitals, it's like a switch is flipped in her head, and she can do the things that are different. She knows the name of her GI doctor. That's how much we see him. She will say "belly hurt, Dr. ....... please". And it breaks my heart and makes me so proud at the same time.
So, we did the colonoscopy clean-out yesterday. She rocked not having her "yogurt medicine" in the morning. {Usually, I give her the omeprazole - her reflux medicine, mixed in yogurt before she gets in the shower}. She was able to move on when I told her it was because we had to do different medicine for the doctor. She knows that when we have to drink Gatorade, she wears a diaper, and she went and got a diaper out. We couldn't do her applesauce medicine {she can't swallow pills, so I crush them, or open capsules, and mix them with applesauce}. She was able to take her clear liquid Keppra and Zoloft though. But she couldn't have her normal breakfast, so I made yellow jello and apple juice the most exciting thing in the world. And she did amazing. Then we started the Gatorade/Miralax clean-out. 8 oz every 30 minutes. And she rocked that. I don't think she quite understood why she couldn't eat though, and I felt really bad. She kept asking for dinner. I offered her a few clear liquid choices but she got mad. I would have to. Eventually, she asked for a popsicle and resigned herself to that. We were up really late last night because it took a long time for the magic potion to start working. She will never tell me when she has to go to the bathroom when she is doing a clean-out, so I have to watch her really close for signs and try to take her at appropriate times. She refuses to get up a lot, so it's a bit of a battle. But we didn't have any accidents last night or this morning so I will call that a win.
I have to run now though to get her up, we have to be at the hospital pretty early today. If you could just keep Vicki in your thoughts today, I would appreciate it. Anytime she gets anesthesia and has a procedure done, I get nervous. I will post later to let you all know how it went. I hope that the doctor is able to find out the cause of the shitty issues she is having, and we can put a plan together to help her. I would love for Vicki to not have to ask for her GI doctor because her belly hurts. Much love to you all. xoxo
Wednesday, April 17, 2019
Day 9. Year 2019
Sorry things got kind of busy yesterday and I didn't get a chance to finish my post and publish it. Here it is: As I said yesterday, I wanted to give a few examples of how autism teetered over the weekend. Both by keeping the balance and by falling off. Let's start off with a good story, a really good story, the kind of story that gives me hope and in a difficult world, restores my faith in the goodness of people. Wow, I talked that up quite a bit. Hopefully, I can deliver. :)
This was Ally's first official modeling job, walking the runway in a multi-designer fashion show. Of course, we all wanted to be there to support Ally. When the kids were little, we tried our best to do everything as a family and to give the kids as 'normal' of a childhood as we could. We did ok for a while. But then it got really hard. Around the time Vicki was diagnosed with PANDAs and her transition anxiety became more prevalent {especially in getting into and out of the car} we started splitting up activities more. Mark would take the kids to their activities and I would stay home with Vicki. Sometimes it was just easier that way. But we all missed spending time together, we are a pretty close-knit family. Anyway, when Mark was home on the weekends it was a little easier, but trying to get the kids to their activities during the week was almost next to impossible. Thankfully we have a wonderful support system of friends who stepped up to help out. But it's really hard to ask for help. And it was hard to miss practices or be late for practices. No matter how good the plan was, things never quite go as planned, right? Eventually, I noticed that the kids weren't joining as many clubs or activities, and they weren't asking to do as many things. And that breaks my heart. My kiddos saw how difficult it was, and tried to lighten the load. Fast forward to this year. With Joe going off to college, and Ally being home-bound for school with her medical issues, it became really important to us to not isolate her even more. So when Ally became really serious about wanting to model, we were going to do everything we could to make sure she was able to get to whatever activity she needed to... whether it be a casting call, a fitting, or a photo shoot. So.... the fashion show this past weekend.....
I have a habit of looking at a specific situation and thinking of all of the possible things that could go wrong. Some may call me pessimistic. I call myself proactive. Because one of the things autism has taught me over the years is that you can have the best laid out plan, and it can still go wrong. The worst case situation? You better damn well plan for it. So we try to. The tickets to attend the fashion show were very costly. And we were going to buy 5 tickets - one for Mark, one for Joe, one for Vicki, one for me, and one for an aide for Vicki. When I called to order the tickets for the show, I spoke with the coordinator. I asked her a little bit about the timing of the event, what would happen when. And I asked her about the layout of the tables and such. We talked for some time as I explained that my daughter has autism and sometimes things are very difficult for her. We wanted her to be a part of this special day for Ally, but also didn't want to disrupt the event in any way. She was so kind and asked many questions. She explained the timing of the events that day and said she would check on a few other things and call me back if she could or just meet up with me the night before at the walkthrough at the venue so I could see how things were set up.
We were 10 minutes late to the rehearsal the night before, not because of autism this time, but because of stupid traffic. Oh northern VA traffic! The coordinator met up with me as promised, and immediately grabbed onto my hand and held it as we talked. It was a sweet gesture. She showed me around a bit, and then told me that one of her immediate family members had a disability and remembered how difficult it was to go places and do things together. And then she told me that she got us the 5 tickets at an empty table right by the back door so if we had to take Vicki out, it wouldn't be very noticeable. And then to my complete shock, she told me that she got the 5 tickets donated to us!!!! I was so taken aback by such a generous gesture. I actually let a few tears slip down my cheek. This was not something I expected or asked for. I simply wanted to plan for the worst, and Mark and I knew that we might be wasting a lot of money if some of us had to leave with Vicki, or if Vicki couldn't overcome her anxiety to get in in the first place. But that was a risk we were ready to assume. And this wonderful lady just made the monetary burden disappear.
The next morning of the fashion show she found me and grabbed my hand again and said she was so happy to have us there. We hadn't brought Vicki in yet, and she told me to find her when Vicki came in so she could meet her and hand us the tickets and seat us. We did. And she did. She was very busy that day making sure the event went as planned. And not only did she take time out to focus on our family, but she also did it with a gentle smile and such kindness. I will never forget her gesture. And with the support of wonderful, kind people like that, and the support of our aide for Vicki, and being together as a family, we made it. We were able to enjoy Ally's fashion show together. With layse black cat, Mark's ability to calm her down and "squishy" Vicki {as she says when she needs some deep pressure and input}, oh, and the amazing chicken meal that was served, along with THE best cheesecake I've ever eaten.... We made it. It helped that Vicki could focus on each of the courses, the salad, the meal, the cheesecake dessert {and quite possibly another slice of cheesecake from the plate that wasn't used next to us} during the part of the program where there was a lot of talking. We were even able to get Vicki outside and meet up with Ally to take some pictures.
Just as a quick aside, I want to talk about Ally and Vicki's relationship in more detail, but I want to get this posted so I will save for next time. I also want to share the not so great moments from that day, the totter. But this was just too good of a story to end on. No reason for any sadness today. I hope everyone gets to experience the kindness of humanity today. Whether it's a grand gesture, like this coordinator of the fashion show demonstrated, or a smaller gesture, a smile, or someone holding the door. Showing kindness and empathy to others, it makes such a difference in this world. Much love to you all. xoxo
Monday, April 15, 2019
Day 8. Year 2019
I think I see a trend here. Weekends have been really hard for me to post. Sorry! Sometimes I find it hard to create a balance. Ok, most of the time I find it hard to create a balance, I find myself more often than not on a teeter-totter, at one extreme or the other. It's darn hard to get that thing right in the middle, ever. I find that to be true with my kids too. Especially when one kid has such extreme and unique needs. This past weekend my teeter was most definitely focused on Ally. She had a final fitting and stage practice Friday night for her first go at modeling in a fashion show and walking the runway. Saturday was the fashion show near Newport News, followed by an early birthday dinner at Kobe, and yesterday was Ally's 14th birthday. So, we all revolved around Ally this weekend. Joe came home from college to celebrate with her too.
Time and attention are two things that are very hard to balance. Kids have special events that require more time and attention at very specific times in their lives. So you jump into that and focus on that. Not many kids want to willingly share the spotlight for their special occasions, but there has to be some give and take all of the time. And for the most part, my kids give and take rather well. Joe's graduation - was about Joe. Vicki's 16th birthday- was about Vicki. Ally's Confirmation was about Ally. Joe's Eagle Scout Ceremony... Ally's NJHS induction.... you get the picture. One of the hardest things though is that for Vicki, a lot of the "special occasions" revolve around medical stuff. It stinks for both Vicki and the rest of the family. We try really hard to have other types of celebrations for Vicki, but the last few years have been very hard.
That damn autism is a spoiled brat. It constantly thinks the world revolves around it. That all of the time and attention needs to be focused on it. Vicki's home 48 hour EEG - was about autism. Vicki's upcoming MRI - about autism. Vicki's GI cleanout - damn you autism and related conditions. Vicki's sleep study - enough already autism. We freakin' see you. Stop hogging the spotlight. Stop stealing the whole teeter-totter. Just stop it. I just want to put autism in a time out. But there is no time out from autism.
If you look at the pictures I post though, you may think, hey, I don't see autism in the picture. Everyone looks so happy. Look at everything they can do together. It doesn't seem that hard. But, believe me, it's there. I sometimes liken autism to a chameleon. Sometimes it blends in so well to the surrounding, you almost don't even see it. And we work really hard at that. We want you to see Vicki, not autism. The amount of behind the scenes works that it takes to get autism to blend in is absolutely mind-boggling to me. It overwhelms me. I can't imagine how it overwhelms Vicki.
I'm going to cheat a little bit... and call this post done. I will write in more detail later about some of the ways autism was able to blend in this weekend with the help of so many people. I will also write about how it was not able to blend in at all. It's one of the hardest balancing acts we've ever had to do. But I believe as a family, we do ok. Actually, more than ok. Everyone gets their moments. And we all hold onto one another to balance. Sure, we fall off. But we dust ourselves off and get right back on. Much love to you all. xoxo
Time and attention are two things that are very hard to balance. Kids have special events that require more time and attention at very specific times in their lives. So you jump into that and focus on that. Not many kids want to willingly share the spotlight for their special occasions, but there has to be some give and take all of the time. And for the most part, my kids give and take rather well. Joe's graduation - was about Joe. Vicki's 16th birthday- was about Vicki. Ally's Confirmation was about Ally. Joe's Eagle Scout Ceremony... Ally's NJHS induction.... you get the picture. One of the hardest things though is that for Vicki, a lot of the "special occasions" revolve around medical stuff. It stinks for both Vicki and the rest of the family. We try really hard to have other types of celebrations for Vicki, but the last few years have been very hard.
That damn autism is a spoiled brat. It constantly thinks the world revolves around it. That all of the time and attention needs to be focused on it. Vicki's home 48 hour EEG - was about autism. Vicki's upcoming MRI - about autism. Vicki's GI cleanout - damn you autism and related conditions. Vicki's sleep study - enough already autism. We freakin' see you. Stop hogging the spotlight. Stop stealing the whole teeter-totter. Just stop it. I just want to put autism in a time out. But there is no time out from autism.
If you look at the pictures I post though, you may think, hey, I don't see autism in the picture. Everyone looks so happy. Look at everything they can do together. It doesn't seem that hard. But, believe me, it's there. I sometimes liken autism to a chameleon. Sometimes it blends in so well to the surrounding, you almost don't even see it. And we work really hard at that. We want you to see Vicki, not autism. The amount of behind the scenes works that it takes to get autism to blend in is absolutely mind-boggling to me. It overwhelms me. I can't imagine how it overwhelms Vicki.
I'm going to cheat a little bit... and call this post done. I will write in more detail later about some of the ways autism was able to blend in this weekend with the help of so many people. I will also write about how it was not able to blend in at all. It's one of the hardest balancing acts we've ever had to do. But I believe as a family, we do ok. Actually, more than ok. Everyone gets their moments. And we all hold onto one another to balance. Sure, we fall off. But we dust ourselves off and get right back on. Much love to you all. xoxo
Thursday, April 11, 2019
Day 7. Year 2019
I had another meeting yesterday. The amount of meetings you have to have in order to continue receiving needed services is sometimes staggering. Between the many different services Vicki needs, it's hard to keep up with what needs to happen when. Triannual meetings. Yearly meetings. Quarterly meetings. Meetings when difficult situations arise. Meetings for this, meetings for that. Meetings to schedule a meeting. Daily communication briefings. And that's just for 1 service. Another one has 3 different levels of providers that I have to meet with, daily, bi-weekly, monthly, quarterly and yearly for reviews. And another service provider monthly, quarterly, yearly reviews. Different types of questionnaires each time. Discussions of goals, of behaviors, of plans... You get the picture. Anyway, one of the questions on one of the numerous questionnaires {where you have to answer always, sometimes, kind of, maybe a few times, never, who knows, I wish I could ask Vicki questionnaires} always gets to me. It's the question about self-harm. That question hurts.
In the past, and I would venture to say some of it was a side effect of a medication, she has had some aggression/self-injurious behaviors occur. And those were hard. Mark had to basically hold her down so she couldn't hit herself in the head repeatedly. Those times were so difficult to watch. And there have been other times. Where it comes out of the blue. She has bitten herself before, and she has taken her hands and hit herself on the head, both open and closed fists. Those times are hard too. And I'm grateful they don't occur frequently. But now I have to answer the self-harm question as occurring daily. And I am heartbroken every day because of it.
The only thing that I don't mind about trichotillomania is saying the word. It's kind of a fun word to say. It kind of rolls off your tongue. Besides that, I hate this disorder. Hate it. Hate it. Hate it. And Vicki has been dealing with it since October 14, 2016. That's the day she started pulling out her eyelashes. At first, it was just the upper eyelashes, but it soon became the lower ones too. And that was hard. And then on May 21, 2017, I went in to wake her up for school. And I looked at her. And I knew something was different. And I just looked at her. And then I realized. And the heartbreak of realizing that she pulled out her entire eyebrow almost made me throw up. And we tried so hard. We slept in with her that night. We blocked her hand every time it went up to her face. And I cried. And we took turns. And two days later she got to her other eyebrow anyway. At first, it was just half of it. And then it was all of it. It's like, I thought if I could just save that little piece of her eyebrow, then maybe it would be ok. Maybe it was a fluke and she would stop. It wasn't and she didn't.
I don't consider myself to be a vain person. So, I don't think my heartache is a purely superficial thing. But I would be lying if it wasn't a tiny part of it. It's everything wrapped up into a pile of little hairs that I find on her bedsheets. The pain that she must be feeling. Both from the actual pulling of the hairs to the compulsion to have to do so. To the level of stress and anxiety that she must feel to do that to herself day in and day out. A few tears are sliding down my cheek right now just thinking about it. I want so badly to take away the hurt and pain and feeling of such anxiousness for Vicki. As a mom, I get that lump in my throat. I am heartbroken that she is hurting. And I can't seem to help her. And it's a daily reminder. Every morning when I go in and wake her up it shocks me all over again. It never gets easier. Every damn day I draw her eyebrows on. Every day I have to hold back the tears as I try to get a decent arch in the brow. Every day. The level of sadness I feel is overwhelming, I can't even imagine how Vicki feels.
Her eyelids are significantly swollen at least 2-3 mornings a week. They are red sometimes. She gets more goop in the tear duct areas now. Eyelashes play a crucial role in protecting the eye. And hers are gone. And that increases her risk of infection. Some days I see a little bit of regrowth. I'll see a few lashes start growing back, or little bits of her eyebrows, and I feel encouraged. But then the next day, they are gone. And I cry again. How long until she is unable to grow the hair back? Will she ever be able to stop? Will I draw her eyebrows on her until the day I die?
We've tried a lot of things in the last 2 and a half years. Antibiotic ointments, vaseline, different types of fidgets, redirection, etc... You name it, we've probably tried it. She pulls at night when her head is under the covers and we are sleeping. But she is not. She is silently pulling. And I am silently crying. Every night before bed she wipes her eyebrows off with a wet wipe. And every morning it shocks me when I look at her face. Sometimes when I am looking through old pictures, I see one where she is smiling, and her eyes are smiling, and she has beautiful long lashes, and her eyebrows are adorable and bushy. And I long for that day again. I know. It's just hair. But it's not just hair. It's so much more.
And that's not all. She's had periods of times when she has pulled from her hair on the top front of her head. Her beautiful long curly hair. I am grateful that she has only pulled little patches, where unless you are looking, you might not notice it's gone. Some of that hair is growing back now and she has little curls springing up that look like bangs.
And that's not all. She has pulled from her private area. I can't imagine the physical and emotional pain she is experiencing to do that to herself. She can't tell me, and maybe I really deep down don't want to know. I don't know if it's because she's anxious, or has a hard time feeling stuff, or simply gets some enjoyment or satisfaction from it. Is it soothing? Is it painful? Does it fulfill a rigid routine she has playing in her head? Just a few weeks ago when she had her seizure, she was in the ER and 2 nurses were helping me change her clothes because she lost bowel and bladder control with that seizure. You know those lights in the ER? They are so bright, and you can see everything, and it always illuminates your skin in unflattering redness and splotchiness. As we were changing her, we had all looked down, and I could see just how much she must have pulled the last few nights. It was red and looked so irritated under those damn lights. And we all just kind of gasped and they murmured, poor sweet girl. And I let a tear escape.
So, yeah. I hate questionnaires that make me relive this horrible type of self-harm more than I do every morning when I wake her up and have to draw on eyebrows to start the day. Every day. And every day I pray that I can find a way to help her. Some days are just hard and I just can't sugarcoat it anyway. It's just hard. Love to you all. Thanks for listening. xoxo
In the past, and I would venture to say some of it was a side effect of a medication, she has had some aggression/self-injurious behaviors occur. And those were hard. Mark had to basically hold her down so she couldn't hit herself in the head repeatedly. Those times were so difficult to watch. And there have been other times. Where it comes out of the blue. She has bitten herself before, and she has taken her hands and hit herself on the head, both open and closed fists. Those times are hard too. And I'm grateful they don't occur frequently. But now I have to answer the self-harm question as occurring daily. And I am heartbroken every day because of it.
The only thing that I don't mind about trichotillomania is saying the word. It's kind of a fun word to say. It kind of rolls off your tongue. Besides that, I hate this disorder. Hate it. Hate it. Hate it. And Vicki has been dealing with it since October 14, 2016. That's the day she started pulling out her eyelashes. At first, it was just the upper eyelashes, but it soon became the lower ones too. And that was hard. And then on May 21, 2017, I went in to wake her up for school. And I looked at her. And I knew something was different. And I just looked at her. And then I realized. And the heartbreak of realizing that she pulled out her entire eyebrow almost made me throw up. And we tried so hard. We slept in with her that night. We blocked her hand every time it went up to her face. And I cried. And we took turns. And two days later she got to her other eyebrow anyway. At first, it was just half of it. And then it was all of it. It's like, I thought if I could just save that little piece of her eyebrow, then maybe it would be ok. Maybe it was a fluke and she would stop. It wasn't and she didn't.
I don't consider myself to be a vain person. So, I don't think my heartache is a purely superficial thing. But I would be lying if it wasn't a tiny part of it. It's everything wrapped up into a pile of little hairs that I find on her bedsheets. The pain that she must be feeling. Both from the actual pulling of the hairs to the compulsion to have to do so. To the level of stress and anxiety that she must feel to do that to herself day in and day out. A few tears are sliding down my cheek right now just thinking about it. I want so badly to take away the hurt and pain and feeling of such anxiousness for Vicki. As a mom, I get that lump in my throat. I am heartbroken that she is hurting. And I can't seem to help her. And it's a daily reminder. Every morning when I go in and wake her up it shocks me all over again. It never gets easier. Every damn day I draw her eyebrows on. Every day I have to hold back the tears as I try to get a decent arch in the brow. Every day. The level of sadness I feel is overwhelming, I can't even imagine how Vicki feels.
Her eyelids are significantly swollen at least 2-3 mornings a week. They are red sometimes. She gets more goop in the tear duct areas now. Eyelashes play a crucial role in protecting the eye. And hers are gone. And that increases her risk of infection. Some days I see a little bit of regrowth. I'll see a few lashes start growing back, or little bits of her eyebrows, and I feel encouraged. But then the next day, they are gone. And I cry again. How long until she is unable to grow the hair back? Will she ever be able to stop? Will I draw her eyebrows on her until the day I die?
We've tried a lot of things in the last 2 and a half years. Antibiotic ointments, vaseline, different types of fidgets, redirection, etc... You name it, we've probably tried it. She pulls at night when her head is under the covers and we are sleeping. But she is not. She is silently pulling. And I am silently crying. Every night before bed she wipes her eyebrows off with a wet wipe. And every morning it shocks me when I look at her face. Sometimes when I am looking through old pictures, I see one where she is smiling, and her eyes are smiling, and she has beautiful long lashes, and her eyebrows are adorable and bushy. And I long for that day again. I know. It's just hair. But it's not just hair. It's so much more.
And that's not all. She's had periods of times when she has pulled from her hair on the top front of her head. Her beautiful long curly hair. I am grateful that she has only pulled little patches, where unless you are looking, you might not notice it's gone. Some of that hair is growing back now and she has little curls springing up that look like bangs.
And that's not all. She has pulled from her private area. I can't imagine the physical and emotional pain she is experiencing to do that to herself. She can't tell me, and maybe I really deep down don't want to know. I don't know if it's because she's anxious, or has a hard time feeling stuff, or simply gets some enjoyment or satisfaction from it. Is it soothing? Is it painful? Does it fulfill a rigid routine she has playing in her head? Just a few weeks ago when she had her seizure, she was in the ER and 2 nurses were helping me change her clothes because she lost bowel and bladder control with that seizure. You know those lights in the ER? They are so bright, and you can see everything, and it always illuminates your skin in unflattering redness and splotchiness. As we were changing her, we had all looked down, and I could see just how much she must have pulled the last few nights. It was red and looked so irritated under those damn lights. And we all just kind of gasped and they murmured, poor sweet girl. And I let a tear escape.
So, yeah. I hate questionnaires that make me relive this horrible type of self-harm more than I do every morning when I wake her up and have to draw on eyebrows to start the day. Every day. And every day I pray that I can find a way to help her. Some days are just hard and I just can't sugarcoat it anyway. It's just hard. Love to you all. Thanks for listening. xoxo
Wednesday, April 10, 2019
Day 6. Year 2019
Good morning! Hope everyone is enjoying, dare I say it, spring! I both love spring and hate spring. I love the weather, all my kids were born in the spring, and to me, it always feels like a new beginning. But I hate spring too because usually, and I have no idea why this is, Vicki has significant trouble in the spring. Out of all my kids, she has the least amount of seasonal allergies. She does take allergy medicine and she used to get LDA (low-dose allergen) shots monthly from her developmental pediatrician. She is the least sniffy of all my kids in the spring. But so many BIG bad things have happened in the spring, that when the end of March rolls around and we dive into April and May, I usually hold my breath. When she was first diagnosed with a seizure disorder, it was May of 2010. She was diagnosed with PANDAs in April of 2012. Her anxiety heightened to the point that she couldn't get into or out of a vehicle starting in April of 2015. In the spring of 2017, she couldn't get on the bus to go to school which was the start of her public school decline, subsequent home-bound, and eventual private day school placement. She had a grand mal seizure in May of both 2017 and 2018, and another seizure a few weeks ago. And those were just some of the major things that happened. So, you can see why I hold my breath.
Yesterday, I think I was talking about OCD. Today I thought I would talk about Vicki and some of the ways we struggle on a daily basis with whatever you want to call it - autism, anxiety, OCD, hormonal teenage girl. Whatever it is, it wraps itself so tight around Vicki, that some days it's hard to break through. And the breath holding that I do in the spring.... it's kind of the same thing I do every morning too. Because you never know with Vicki. You never know what little thing it will be, or at what spot in her routine she will get hung up, but the fear, it's always there bubbling under the surface. I try really hard to stay cool, to not react to things. I firmly believe that Vicki can read people better than most people can. I swear she can smell the fear. And of course, that's not good at all.
One of the things that scare me the most is that I really don't know if Vicki would get up and out of bed in the morning if it wasn't for me. Think about that for a second. Sure when your kiddos are babies and toddlers, all you want for them is to sleep a little more, stay in bed on a Saturday until at least the sun comes up. And then as your kiddos hit the teen years, you wonder if they will get up before noon on a Saturday. The pendulum swings from one extreme to the other. And yes, there are times that you have to rip off their covers, bust open the curtains and belt out in your best Joey from Friends voice:
Morning's here. The morning is here. Sunshine is here. The sky is clear. The morning's here.
What? You don't do that too? Mark is the best at it. The kids love it, I swear. Ha!! Sorry, I digressed. But what if your kids never got out of bed? At some point, they have to be hungry, or have to go to the bathroom, or just get bored sleeping and being alone, don't they?
Anyway, things are difficult with Vicki's sleep. In summary, she doesn't sleep much. We've been working on that, but to no avail so far. We had a sleep study which just proved to the technicians that we were telling the truth, she doesn't sleep, usually doesn't hit REM sleep, and if she does fall asleep, it's not till about 4 or 5 in the morning. She is up most of the night, sometimes she scripts and talks to herself about her schedule the next day, or what she wants to happen. Other times she gets up and plays a board game in the middle of the night, without lights on, sitting on the floor. Still, other times she just stares and relaxes in the covers. She typically keeps the covers over her head so it's really hard to tell when and if she falls asleep. We've tried lots of different things over the years and saw a lot of different doctors. She's done melatonin, we've tried and failed other sleep medications.. We've made changes to her room, her lighting, the sounds, removed all things she could look at or play with, brought them back. Stayed in her room with her, sat outside her room and would go in when we would hear something. You name most things, we've tried them. They want another sleep study, and we are gearing up for another new sleep medicine that her psychiatrist thinks may be THE one for her. But we have to be careful with meds, and the side effects, and how much interactions they have with her other meds, and how much they lower her seizure threshold. It's a balancing act. And it always scares me when we try something new, because I never know how it makes her feel. Or if she is experiencing scary side effects that we don't know. And every morning when I go in her room to get her up, I have to pull the covers off her and the bed. And usually, she is not all bleary-eyed, like you are when you have been sleeping hard. Usually, she looks awake. Very awake. But she won't get out of bed to get up and start the day. Yes, there are times few and far between that she has that redness and sheet wrinkles on her skin, and her eyes look tired, like she had been sleeping hard, but it's not often. And sometimes she wakes up and says she has to go to the bathroom. But then she wants to get back in the covers and "rest and relax". Other times she just has accidents in her bed and never asks to get up.
For the most part, Vicki gets up out of bed, only when I go in and pull the covers off her and the bed, and hand her the visual schedule for the day. If I don't take that off of her in a minute, then she still just lays in bed. Once I take the schedule from her, she gets up, always on the right side of the bed, grabs her glasses, Layse Black Cat and Fox, and goes into the bathroom. We've tried over the years to do other things, but this is what works, at least for right now. If I just go in and tell her it's time to get up, nothing happens. If I go in and rip the covers off and don't give her the visual schedule, nothing happens. If I just go in and sit in her room, nothing happens. If I let her "sleep in" and don't get her up, nothing happens. Some days when I know she was up really late, or I can just tell she needs more time to snuggle under the covers, or whatever, I wait and see if she will get up on her own. She never does. We've had it be 1 o'clock in the afternoon before and she will still be in bed if I don't go in, do her routine, and get her up. Some mornings on the weekend, I run out to the store or something, and the thing that weighs heavy on my heart is that I know just how much I am needed. Like, Vicki depends on that routine so much, that if I didn't get back home.... would she ever actually get up out of bed? And that scares me tremendously.
I love being needed and wanted. I love being a mom. I love being nurturing and loving, and I love doing things for my husband and kids that make them happy. But the sheer weight of being needed for Vicki to get up and start her day, it's a lot. Yes, we've tried having Mark help her, or the other kids, or aides that work with Vicki, but it doesn't really work. Can I try harder? Yes, I'm sure I could. I know, what if something happens? Or, hey mom, you need a break, let someone else do it. I know. But it's a lot easier to offer the advice, and it's even easy knowing it's the right advice than it is actually doing it. If you wait her out long enough, she's bound to get up, right? Well, we've lived through "waiting it out". We've done "waiting it out" for years. And it's exhausting. We do it for so many aspects of her life, and our life. Until you have to "wait it out" you don't really get the emotional implications of it. Yes, we've waited things out. Sometimes for up to 8 hours. But sometimes certain things take precedent. What do we need Vicki to do that day? The whole pick your battles... And does getting to a doctor's appointment, or getting to school take precedent? Sometimes. Because the moment you try to wait it out, for one thing, something else happens and then a routine is established that you never meant to happen and you can't stop it. And then you are stuck with something new that you have to figure out how to fix. And sometimes, just as a caregiver, I need a break. Yes, but sometimes that break takes the form of other things. Wanting not to start the day with a battle that you will have to wait out for hours. Wanting just to have some coffee with my husband and watch a home improvement show before we attempt to try something new. Or, just wanting the day to just happen, so you let the routines that run your life run their course because it's just easier sometimes. I'm sure some of you that are reading this think, 'don't complain about something being hard if you aren't willing to try to change it'. And while that's true, and I do know that things can't be the same forever, I am currently working on other battles that are raging. That doesn't mean that I don't think this is important, clearly, it is. And we've worked on this before, but right now I guess I am just taking the "easy way out" and focusing on other stuff because I can only handle so many things at one time. And currently, this isn't ideal, but it's working {for the most part}. And she is getting to school right now. So, there's that. And I will take that as a current win.
I guess I spent so much time talking about Vicki getting out of bed in the morning that I didn't really get into the rest of the day... Sorry!! I will just leave you with this... so I get her out of bed. That's only the first of the many times I hold my breath each morning. Another big breath-holding moment is when she is getting out of the shower. Sorry, I have to run right now, but I will talk about that next time... Love you all. xoxo
Tuesday, April 9, 2019
Day 5. Year 2019
I talked a little bit yesterday about Vicki's OCD, and how it can be triggered by a seemingly simple change to her breakfast. In general, I probably throw the term OCD around too loosely. I think it's next to impossible to categorize and label Vicki's multitude of, for lack of a better word, idiosyncrasies. And in the end, it doesn't really matter how they are categorized. What matters is how I can help her function within them and around them.
As I said before, I am not a professional; and I don't feign understanding of this disorder. When things with Vicki get really hard, I do try to educate myself as much as possible on the issue of the day. I don't, however, research things as much as I used to. Generally, I feel overwhelmed. And I can easily get lost in the sea of information available at the click of a button. But I've found that no matter what a beautifully put together power point says, or what an intervention looks like in a book, or even what is supposed to happen when you are talking through protocols, there is no easy answer. Not with much of anything in life. And definitely not with Vicki.
Obsessive-Compulsive Disorder (OCD) is characterized by having a pattern of unreasonable thoughts or fears (obsessions) that lead you to do repetitive behaviors (compulsions). And a key component of OCD is that these behaviors interfere with daily activities and cause significant distress. {as defined by the Mayo clinic}. When I read the first part of the definition, I think so much about those early years of autism. And the many, many forms and questionnaires that I have to fill out tracking Vicki's progress/behaviors, etc... Words such as repetitive and ritualistic. Does the child have hoarding tendencies... Does the child line things up in a certain way? He's obsessed with dinosaurs. She carries around her books all the time. They line things up in a certain way. She has to turn the lights on and off 4 times every time she goes into a room. He spins around in a circle for exactly 3 minutes.... And so on. Is that all OCD? I don't know. But what I do focus on with Vicki is this. I look at 1 instance of behavior and I think... does this interfere with her daily function? Is she unable to move on? Or is it just annoying and time-consuming? Quite often, I don't know the answer to that question. And yet again, another instance where I wish Vicki could tell me what it feels like.
A few treatment options that I've studied and looked into over the years have include ERP and CBT. {Sometimes I feel smart when I am with my husband, who speaks in abbreviations all the time with his work, and a doctor or therapist we are talking to mentions an abbreviation that I know, and I nod my heading knowingly. Ha!} Exposure and Response Prevention (ERP) is when the patient is exposed to the feared stimuli and is simultaneously prevented from engaging in a ritual. Cognitive Behavior Therapy (CBT) helps patients understand the thoughts and feelings that influence behavior. It sounds easy enough on paper. Not so much in real life with Vic. Yet again, a perfect example of how language is so important. Yes, Vicki is verbal. And I am forever grateful for that. And she works really hard at aquiring words and building her communication skills. But it is very difficult for her. And many people who don't know Vicki well can't understand her. And many professionals take things at face value with Vicki. When in reality, her echolalia is in play, or she is scripting, or she is repeating the last choice you gave her... And a lot of the time she answers yes/no questions incorrectly. Or her responses are not correct, but most people wouldn't know that because they aren't privy to knowing her daily schedule. But, what I miss with Vicki, is the ability to have a back and forth conversation. And the ability for her to reach within and tell me about how she feels. Oh, she can definitely tell me how she feels, as I've described before. But I mean, really tell me. And that makes it hard to be successful with either of those above interventions.
I'm sorry if this post doesn't make much sense today. I feel like I'm spinning off in a thousand directions today and I have a lot of stuff on my mind and my to-do list. I plan to write more about how Vicki's OCD and anxiety impact her daily function and what it looks like on a typical day. But I need to stop for today. Much love to you. xoxo
As I said before, I am not a professional; and I don't feign understanding of this disorder. When things with Vicki get really hard, I do try to educate myself as much as possible on the issue of the day. I don't, however, research things as much as I used to. Generally, I feel overwhelmed. And I can easily get lost in the sea of information available at the click of a button. But I've found that no matter what a beautifully put together power point says, or what an intervention looks like in a book, or even what is supposed to happen when you are talking through protocols, there is no easy answer. Not with much of anything in life. And definitely not with Vicki.
Obsessive-Compulsive Disorder (OCD) is characterized by having a pattern of unreasonable thoughts or fears (obsessions) that lead you to do repetitive behaviors (compulsions). And a key component of OCD is that these behaviors interfere with daily activities and cause significant distress. {as defined by the Mayo clinic}. When I read the first part of the definition, I think so much about those early years of autism. And the many, many forms and questionnaires that I have to fill out tracking Vicki's progress/behaviors, etc... Words such as repetitive and ritualistic. Does the child have hoarding tendencies... Does the child line things up in a certain way? He's obsessed with dinosaurs. She carries around her books all the time. They line things up in a certain way. She has to turn the lights on and off 4 times every time she goes into a room. He spins around in a circle for exactly 3 minutes.... And so on. Is that all OCD? I don't know. But what I do focus on with Vicki is this. I look at 1 instance of behavior and I think... does this interfere with her daily function? Is she unable to move on? Or is it just annoying and time-consuming? Quite often, I don't know the answer to that question. And yet again, another instance where I wish Vicki could tell me what it feels like.
A few treatment options that I've studied and looked into over the years have include ERP and CBT. {Sometimes I feel smart when I am with my husband, who speaks in abbreviations all the time with his work, and a doctor or therapist we are talking to mentions an abbreviation that I know, and I nod my heading knowingly. Ha!} Exposure and Response Prevention (ERP) is when the patient is exposed to the feared stimuli and is simultaneously prevented from engaging in a ritual. Cognitive Behavior Therapy (CBT) helps patients understand the thoughts and feelings that influence behavior. It sounds easy enough on paper. Not so much in real life with Vic. Yet again, a perfect example of how language is so important. Yes, Vicki is verbal. And I am forever grateful for that. And she works really hard at aquiring words and building her communication skills. But it is very difficult for her. And many people who don't know Vicki well can't understand her. And many professionals take things at face value with Vicki. When in reality, her echolalia is in play, or she is scripting, or she is repeating the last choice you gave her... And a lot of the time she answers yes/no questions incorrectly. Or her responses are not correct, but most people wouldn't know that because they aren't privy to knowing her daily schedule. But, what I miss with Vicki, is the ability to have a back and forth conversation. And the ability for her to reach within and tell me about how she feels. Oh, she can definitely tell me how she feels, as I've described before. But I mean, really tell me. And that makes it hard to be successful with either of those above interventions.
I'm sorry if this post doesn't make much sense today. I feel like I'm spinning off in a thousand directions today and I have a lot of stuff on my mind and my to-do list. I plan to write more about how Vicki's OCD and anxiety impact her daily function and what it looks like on a typical day. But I need to stop for today. Much love to you. xoxo
Monday, April 8, 2019
Day 4. Year 2019
I didn't stop blogging already, honest. We've been kind of busy the last few days, and I didn't have access to my computer. And, of course, I forgot my password so I couldn't log in on my phone either. I actually missed writing so I may try to play catch up over the next day or so. I'm going to change gears a little bit today. I want to warn you: if you are not comfortable talking about normal bodily functions, this might not be the post to read. I also want to warn you: when I talk about things that are sensitive, or difficult, I tend to use humor. A lot. Sometimes things are so hard that you just have to laugh. And I laugh a lot. If I don't make a joke, then I cry. And I'd much rather be laughing than crying most days. In my own twisted humor, here we go.
You know the milk tag line? "Got milk?" Well, I kind of live by a very different tag line most days we'll call, "Got poop?" Thank goodness for the poop emoji. You know, the poop emoji is the most frequent emoji that I use? Not sure if I should brag about that or not. I find poop jokes hilarious. I was going to tell you a poop joke, but it was too crappy. Oh, come on, you're laughing! Poop is funny stuff!
I will tell you what's not funny though. Having your daughter's GI on speed dial. Having an album on your phone that has poop pictures added to it daily. Or worse yet, not actually putting said poop pictures into the album in a timely manner, and randomly scrolling through pictures of a happy day and then bam. Poop. Well, crap. I even have a poop calendar, that I've color-coded with the different types of poop that she has. Did you know there is a poop scale for describing it? It's called the Bristol Stool Chart. And it describes 7 different types that have pictures to go along with the descriptions. I bet I am one of the only ones who is reading this that has one of those charts printed out. Not just printed out, but laminated. Yeah, that's pretty sad. Or pretty cool. Depending on how you look at it.
There's no question that there is a gut-brain connection. Have you ever had a "gut-wrenching" experience? Or gone with your "gut feeling"? Have certain situations made you "feel nauseous"? Have you ever had "butterflies" in your stomach? The gastrointestinal tract runs from the esophagus to the rectum and is lined with millions of nerve cells that make up the enteric nervous system (ENS). That's a pretty cool connection if you really think about it. I'm kind of fascinated with the complexity of the human body. Anyway, I see it every day with Vicki. It's hard to tell most of the time what is causing certain types of behaviors. But, sometimes there is a very clear connection. It's hard to describe. Vicki is just off. Like really off. More than normal. And her behaviors fluctuate tremendously. And then, low and behold, an hour or 2 later she has a really odd bowel movement. And I have an ahhhh haaaa moment. Also, I am convinced that some of her grand-mal seizures are directly related to the health of her GI tract. I take copious amounts of notes on Vicki's behaviors. I have journals that date back to when she was a baby. It's truly a fascinating read. I take notes so that I can describe what's going on around times she is having significant medical issues. I take notes because Vicki can't. And she can't tell the doctor the last time she had a bowel movement or what it was like. And I take notes because I'm convinced that someday I will find our very own Dr. House, who will pour over my Vicki journals, write on his whiteboard, connect all of the dots, and give Vicki the relief she desperately needs. Mainly, I have to have a way to hold onto hope.
Sorry, I kind of digressed there. Just like everything else in Vicki's life, we have different seasons of poop. We deal with something for a few years, and just when you think you can't handle it anymore, it subsides. And then you get comfortable, and you forget how hard things were. And then it comes back, full force, and there you are again. In a very difficult circle of shit. Vicki has dealt with incontinence her whole life, she was diagnosed with chronic constipation at a time when I thought she was pretty regular. She has been on medication to treat her GI problems, and we have done countless bowel clean-out protocols. She has had more than her share of abdominal x-rays and we are currently dealing with a 4-month cycle of explosive diarrhea and mushy stools which, crazy enough, her x-ray a few weeks ago, showed another blockage in her colon.
Because I usually get a lot of questions about this, I wanted to address gluten-free. No, Vicki is not currently on a gluten-free diet. Although we've thought about it many times throughout the years, she's never been fully gluten-free. Should she? Possibly. It's not a cut and dry decision for us though. Vicki's had many allergy tests, and tests to see if she is sensitive to gluten, she's had Crohn's disease testing, and biopsies were taken to check for Celiac's disease. Everything has come up negative. Every time. Now that doesn't mean we still shouldn't go gluten-free. Although currently, our GI does not want us to try this with Vicki, and we are taking his advise and working through his protocols now. Another reason why we've just never tried gluten-free is that we've never seen any specific behavioral changes, say, after she's had a plate of spaghetti. I know for some kids, you can tell right away from their behavior if they've ingested gluten. Because Vicki has such severe OCD and anxiety, it's not super easy to change up things with her. She typically eats a very well balanced diet, she loves salads and veggies, and fruits. And, yes, she does enjoy her carbs too, but, honestly, in moderation. Even more so since we've been dealing with a diabetes diagnosis (not Vicki) in the family, we've been very aware of the food we've been eating. Anyway, we've had our share of issues in trying to get Vicki to school... things got so severe behaviorally, that she missed well over 70 days of school one year, which eventually prompted home-bound services, and finally a change in placement to a day school. Because her behaviors change so much, you never know what will stop her in her tracks. Some types of foods she takes forever to eat. And it's very difficult to change up a routine of hers, especially what she eats for breakfast. It's one of those... well, what is the most important goal we are working on right now? If it's actually getting her to go to school, then changing up one little piece of her morning routine can have disastrous effects. And those effects can ripple down to months of difficulty that you never thought would occur because of a simple little changeup. So, we think of things all of the time and play out different scenarios in our head (both that we've experienced before, and things that may seem unforeseen and difficult to imagine) and may make the wrong choices. But we do try to listen to the doctors and specialists that work with Vicki. We might try to go gluten-free when the doctor gives us the go-ahead, but we have to look at how her life as a whole is affected by each of the choices we make.
Anyway, like I said in the beginning, you have to laugh. At situations, at yourself, at everything. Because if you don't, sadness may take over and dominate. So, here's a funny antidote for you. We've had to collect stool samples from Vicki twice over this last month. And it's a hard game to play. Not only do you have to catch her going, but you have to make sure the timing lines up with the hours available at the lab. Because there's no point in going through the hassle if it's not fresh enough. So, a few weeks ago, we had a winner. I had the little catch-all positioned fairly good, she went, and I was able to collect it and take it in in a timely manner. I felt like the world's coolest chemist. I had my gloves on, of course, and imagined myself in a hazmat suit and goggles. I got on the floor and had my 7 vials and the multiple collection tools at my disposal. I got right in there, gathered what I needed, measured, poured, labeled, and then shook up my samples. Then I cleaned everything up, placed my samples in a brown bag, and labeled it five guys french fries and put it in the fridge. Just kidding!!! Well, I did put it in a brown bag and labeled it, but the rest I made up. And the feeling of success after collecting the correct samples. Priceless. Ha. I did a little dance, sprayed a little Lysol, and dropped off the samples. Then I did it all again a few weeks later. And the most frustrating part? We got some of the labs back, and yup. Everything was normal. It's not that I want something scary abnormal. But, I do want answers. Something is most definitely wrong, but we can't figure out what.
Do you want to hear another poop joke? Nevermind, it's too corny. {Ba.Da. Bing} Speaking of corn... an easy way to see the motility of your bowels is to do the corn test, or so I've been told. You consume corn, and then see how long it takes you to see some kernels come out in your poop. It actually scared me the other day with Vicki. I saw some in her stool, and I was thinking, when did she last eat corn? It was 12 days prior. I'm not an expert. But that's not good.
I know I talk about poop a lot. It's because it's on my mind a lot. And sadly, on my hands, and on the sheets, and in her clothes. I've thrown away countless undergarments because I just can't sometimes. I've had periods of times where I have to clean her sheets and her room on a daily basis. I cry because she's almost 17 years old, and she still has accidents. She still wears adult diapers at night, and sometimes during a really bad day. She still doesn't know that she has to go at times. And one of the worst parts? Listening to her say, "Belly hurts. Doctor please" And she will say her GI doctor's name. (There aren't many doctors names that she remembers, but he is one of them that she does.) And another thing that makes me cry... her needing to hold my hand sometimes because she needs to when she is in the bathroom. But you know what? I want to be right there with her, holding her hand when she is struggling and telling her it's ok. And then her saying, "Mommy, take a picture of poopy, please." Because she knows the drill. And she has incorporated that into her OCD repertoire now. Sometimes shit just stinks. And this stinks. And I hate it for Vicki. Well, on that note. Love you all. Hopefully, next post won't be as crappy. xoxo
You know the milk tag line? "Got milk?" Well, I kind of live by a very different tag line most days we'll call, "Got poop?" Thank goodness for the poop emoji. You know, the poop emoji is the most frequent emoji that I use? Not sure if I should brag about that or not. I find poop jokes hilarious. I was going to tell you a poop joke, but it was too crappy. Oh, come on, you're laughing! Poop is funny stuff!
I will tell you what's not funny though. Having your daughter's GI on speed dial. Having an album on your phone that has poop pictures added to it daily. Or worse yet, not actually putting said poop pictures into the album in a timely manner, and randomly scrolling through pictures of a happy day and then bam. Poop. Well, crap. I even have a poop calendar, that I've color-coded with the different types of poop that she has. Did you know there is a poop scale for describing it? It's called the Bristol Stool Chart. And it describes 7 different types that have pictures to go along with the descriptions. I bet I am one of the only ones who is reading this that has one of those charts printed out. Not just printed out, but laminated. Yeah, that's pretty sad. Or pretty cool. Depending on how you look at it.
There's no question that there is a gut-brain connection. Have you ever had a "gut-wrenching" experience? Or gone with your "gut feeling"? Have certain situations made you "feel nauseous"? Have you ever had "butterflies" in your stomach? The gastrointestinal tract runs from the esophagus to the rectum and is lined with millions of nerve cells that make up the enteric nervous system (ENS). That's a pretty cool connection if you really think about it. I'm kind of fascinated with the complexity of the human body. Anyway, I see it every day with Vicki. It's hard to tell most of the time what is causing certain types of behaviors. But, sometimes there is a very clear connection. It's hard to describe. Vicki is just off. Like really off. More than normal. And her behaviors fluctuate tremendously. And then, low and behold, an hour or 2 later she has a really odd bowel movement. And I have an ahhhh haaaa moment. Also, I am convinced that some of her grand-mal seizures are directly related to the health of her GI tract. I take copious amounts of notes on Vicki's behaviors. I have journals that date back to when she was a baby. It's truly a fascinating read. I take notes so that I can describe what's going on around times she is having significant medical issues. I take notes because Vicki can't. And she can't tell the doctor the last time she had a bowel movement or what it was like. And I take notes because I'm convinced that someday I will find our very own Dr. House, who will pour over my Vicki journals, write on his whiteboard, connect all of the dots, and give Vicki the relief she desperately needs. Mainly, I have to have a way to hold onto hope.
Sorry, I kind of digressed there. Just like everything else in Vicki's life, we have different seasons of poop. We deal with something for a few years, and just when you think you can't handle it anymore, it subsides. And then you get comfortable, and you forget how hard things were. And then it comes back, full force, and there you are again. In a very difficult circle of shit. Vicki has dealt with incontinence her whole life, she was diagnosed with chronic constipation at a time when I thought she was pretty regular. She has been on medication to treat her GI problems, and we have done countless bowel clean-out protocols. She has had more than her share of abdominal x-rays and we are currently dealing with a 4-month cycle of explosive diarrhea and mushy stools which, crazy enough, her x-ray a few weeks ago, showed another blockage in her colon.
Because I usually get a lot of questions about this, I wanted to address gluten-free. No, Vicki is not currently on a gluten-free diet. Although we've thought about it many times throughout the years, she's never been fully gluten-free. Should she? Possibly. It's not a cut and dry decision for us though. Vicki's had many allergy tests, and tests to see if she is sensitive to gluten, she's had Crohn's disease testing, and biopsies were taken to check for Celiac's disease. Everything has come up negative. Every time. Now that doesn't mean we still shouldn't go gluten-free. Although currently, our GI does not want us to try this with Vicki, and we are taking his advise and working through his protocols now. Another reason why we've just never tried gluten-free is that we've never seen any specific behavioral changes, say, after she's had a plate of spaghetti. I know for some kids, you can tell right away from their behavior if they've ingested gluten. Because Vicki has such severe OCD and anxiety, it's not super easy to change up things with her. She typically eats a very well balanced diet, she loves salads and veggies, and fruits. And, yes, she does enjoy her carbs too, but, honestly, in moderation. Even more so since we've been dealing with a diabetes diagnosis (not Vicki) in the family, we've been very aware of the food we've been eating. Anyway, we've had our share of issues in trying to get Vicki to school... things got so severe behaviorally, that she missed well over 70 days of school one year, which eventually prompted home-bound services, and finally a change in placement to a day school. Because her behaviors change so much, you never know what will stop her in her tracks. Some types of foods she takes forever to eat. And it's very difficult to change up a routine of hers, especially what she eats for breakfast. It's one of those... well, what is the most important goal we are working on right now? If it's actually getting her to go to school, then changing up one little piece of her morning routine can have disastrous effects. And those effects can ripple down to months of difficulty that you never thought would occur because of a simple little changeup. So, we think of things all of the time and play out different scenarios in our head (both that we've experienced before, and things that may seem unforeseen and difficult to imagine) and may make the wrong choices. But we do try to listen to the doctors and specialists that work with Vicki. We might try to go gluten-free when the doctor gives us the go-ahead, but we have to look at how her life as a whole is affected by each of the choices we make.
Anyway, like I said in the beginning, you have to laugh. At situations, at yourself, at everything. Because if you don't, sadness may take over and dominate. So, here's a funny antidote for you. We've had to collect stool samples from Vicki twice over this last month. And it's a hard game to play. Not only do you have to catch her going, but you have to make sure the timing lines up with the hours available at the lab. Because there's no point in going through the hassle if it's not fresh enough. So, a few weeks ago, we had a winner. I had the little catch-all positioned fairly good, she went, and I was able to collect it and take it in in a timely manner. I felt like the world's coolest chemist. I had my gloves on, of course, and imagined myself in a hazmat suit and goggles. I got on the floor and had my 7 vials and the multiple collection tools at my disposal. I got right in there, gathered what I needed, measured, poured, labeled, and then shook up my samples. Then I cleaned everything up, placed my samples in a brown bag, and labeled it five guys french fries and put it in the fridge. Just kidding!!! Well, I did put it in a brown bag and labeled it, but the rest I made up. And the feeling of success after collecting the correct samples. Priceless. Ha. I did a little dance, sprayed a little Lysol, and dropped off the samples. Then I did it all again a few weeks later. And the most frustrating part? We got some of the labs back, and yup. Everything was normal. It's not that I want something scary abnormal. But, I do want answers. Something is most definitely wrong, but we can't figure out what.
Do you want to hear another poop joke? Nevermind, it's too corny. {Ba.Da. Bing} Speaking of corn... an easy way to see the motility of your bowels is to do the corn test, or so I've been told. You consume corn, and then see how long it takes you to see some kernels come out in your poop. It actually scared me the other day with Vicki. I saw some in her stool, and I was thinking, when did she last eat corn? It was 12 days prior. I'm not an expert. But that's not good.
I know I talk about poop a lot. It's because it's on my mind a lot. And sadly, on my hands, and on the sheets, and in her clothes. I've thrown away countless undergarments because I just can't sometimes. I've had periods of times where I have to clean her sheets and her room on a daily basis. I cry because she's almost 17 years old, and she still has accidents. She still wears adult diapers at night, and sometimes during a really bad day. She still doesn't know that she has to go at times. And one of the worst parts? Listening to her say, "Belly hurts. Doctor please" And she will say her GI doctor's name. (There aren't many doctors names that she remembers, but he is one of them that she does.) And another thing that makes me cry... her needing to hold my hand sometimes because she needs to when she is in the bathroom. But you know what? I want to be right there with her, holding her hand when she is struggling and telling her it's ok. And then her saying, "Mommy, take a picture of poopy, please." Because she knows the drill. And she has incorporated that into her OCD repertoire now. Sometimes shit just stinks. And this stinks. And I hate it for Vicki. Well, on that note. Love you all. Hopefully, next post won't be as crappy. xoxo
Wednesday, April 3, 2019
Day 3. Year 2019
Good morning! So, for starters, I said yesterday that I would describe how Vicki puts puzzles together. And in describing this, I hope it gives you a little glimpse into the complexity of Vicki's world and a chance to begin a discussion on OCD. Before I go any further, I want to be very clear. I am writing this from the perspective of being an expert in 1 field and 1 field only. I am writing this as Vicki's mom. Period. Yes, I believe I am as close to an expert as anyone can be in discussions that revolve around Vicki. I have the advantage of observing her behavior day in and day out, just about 24/7 from the day she was born. I have seen her grow and change; I have seen behaviors emerge, disappear, and circle around again and again. But to be clear, the only expert on Vicki is Vicki herself. And what I wouldn't give to be able to talk to Vicki and have her describe how and what she is feeling. Now, that's hard for anyone to do, talk about our feelings and motivations, but it is especially hard for Vicki because of her own set of unique challenges. I want to talk about Vicki's forms of communication but will save that discussion for another post. I also want to stress that I am not an expert in the field of psychiatry or psychology, or in the field of behavior analysis. I do research, I do the google dance, and I observe and theorize a lot. I've seen interventions that work with Vicki, I've seen interventions that fail with Vicki. I have a collection of 'tools' that I try to use to help her navigate the world on a daily basis. And that's about it. A lot of the times I wing it, or look like that little girl in the meme world - the one who has 2 pigtails and shrugs her shoulders, makes a dumbfounded face, and throws her hands up, like 'I have no freakin' idea'. With all of that being said, here we go.
I always wonder when Vicki is completing an activity, 'Does she like it? Is she enjoying it?' That's such a hard question to answer, and I really can't. When I look at Vicki's behaviors and tendencies, I absolutely compare them to the behaviors and tendencies of her 2 siblings. I don't look at it as comparing a-typical to neuro-typical or look at it as a competition... well, Joey knew his colors and numbers by the time he was blank years old and he blank blank blank. But there are always comparisons. And that's not always a bad thing. Because for 1, I look for expectations in certain situations. You hear all the time that for children with developmental delays and autism and other conditions, that there is too much focus on what they can't do, and not enough on what they can. There is too much focus on their deficits and not enough focus on their strengths. And I agree with that, to a degree. I try very hard to celebrate Vicki, in all of her uniqueness. She has taught me so much, she has so many strengths, I could fill up pages and pages and if I keep digressing on this post, I will. :) But, she also has weaknesses, as we all do. And so much time and energy is focused on goals to get her to a certain level. Is that bad? Coming from a background as a physical therapist, goals are ingrained into my thought processes. SOAP notes. Subjective. Objective. Assessment. Plan. Measurable and quantifiable goals. Yes, they are needed. They are needed to measure progress, assess whether your plan is working, or if you need to change strategies. And, bottom line, for just about anything in life, you need to prove that what you are doing is working so that the appropriate professions can get reimbursed and paid. Anyway, sheesh. Squirrel. I can't seem to actually put a complete thought together. Sorry. I was talking about looking at expectations in certain situations. Because we have so many interventions and strategies that we use with Vicki, sometimes it's hard not to get bogged down with analyzing every moment. Sometimes I have to take a step back and say to myself, what would I expect in this situation from Joe or from Ally?
For example, I started off by talking about Vicki completing an activity and wondering if she enjoyed it. Does Vicki like to do puzzles? I'm not sure. One thing I absolutely HATE completing, and I have to do this on a regular basis, is 'preference assessments'. Trying to figure out the things that Vicki prefers to do so that we can see what kind of reinforcers are meaningful. I really dislike analyzing leisure activities. Maybe I think too much about it. Ha. Me overanalyzing something. Unheard of :) I think it's an interesting question tho. What do you enjoy doing? If you didn't have the language to describe it to someone, how would someone know what you liked? Maybe looking at cues, right? Looking to see, well, first of all, if there is an activity set up at the table and you are in the living room, would you get up to complete the activity? Sometimes a question seems so cut and dry, doesn't it? For anyone, not just for Vicki, but maybe at that moment you just aren't interested, right? Sometimes you have to be in the mood to do something. Maybe at that particular moment, the thing you enjoy the most is being a lazy bum on the couch. Doing absolutely nothing. Getting lost in your own mind. Daydreaming. {As a side note, what I wouldn't give to be a fly on the wall in Vicki's daydreams.} If I had a puzzle box set out on the kitchen table and asked Joe or Ally if they wanted to come out and put a puzzle together with me, would they? They would probably moan and complain and whine about it, or they would ignore me completely and stare zombie-like at their twitter feed, or Instagram feed on their phones. Does that mean they hate puzzles? No. But, will they come out and help me? Probably. Because a lot of the time the puzzle ends up being a backdrop for conversation and enjoyment in back and forth banter. And that, that social interaction, can be a huge motivator for a lot of people. And that social interaction is something that many people crave and could be what draws Joe and Ally out to the table to do an activity with me. Is that what would draw Vicki out? Probably not. I also wanted to point out one other thing. When I was talking about preference assessments, how do you find out what someone wants if they don't have the verbal strength to scan their memory and tell you? One of the ways is to set up a field of view for the person. For example, set out a puzzle, a coloring book, and a game. See which one the person picks. But one thing you have to be careful of with Vicki, and with many people, is how you set up the choices. Sometimes Vicki will pick the one on the left side consistently. Or have some sort of pattern that she chooses from that only she knows. So, you have to vary the location of the choices. It's the same with spoken language choices. Do you want blank or blank? You always want to make sure you switch around the choices because the pattern may be that she chooses the first answer all of the time. Or it could be that she just repeats {echolalically} the last thing she hears. Ok, back to the activity.
When someone is completing an activity, you look for clues to see if they are enjoying themselves, right? Do they smile occasionally? Do they talk amicably about it? Do they stick with it? Do they seem interested in completing it? Do they actively seek it out? With Vicki, it's hard to interpret some of the clues/cues you see, and some things just don't occur at all. So, how does she put a puzzle together? She regularly completes 50 piece puzzles, and she can do a 100 piece puzzle. She does like to look at the puzzle box as she is putting the puzzle together. If I were to just put the puzzle in front of Vicki and strictly observe her, not say anything to her, or cue her in any way, she would put the puzzle together starting in the upper left hand corner of the puzzle and work systematically through the puzzle from top to bottom, left to right. Piece by piece. She wouldn't move on to the next piece until the piece that touches it directly is found and put in its place. She will work at the puzzle this way until it is all complete. She's actually really good at puzzles. She has a knack for finding the pieces and putting them in quickly. And most of the time, she just sees it. Like, she won't have to turn the puzzle piece each different way to see if it fits. She sees the piece, picks it up, and places it correctly in its spot on the first try. It's actually pretty cool to watch.
Is there a woo-hoo moment at the end of her puzzle when she triumphantly says, I did it! Come check this out! No. Have I occasionally seen a little smile tug at the corners of her mouth? Yes. Does she talk to anyone while she is completing a puzzle? Not usually, unless forced to, and you can tell she's not happy about it. Does she allow someone to jump in and help her? Not usually. And if that happens, she may yell or try to block you from assisting. Will she randomly get up on a Saturday afternoon and grab a puzzle to do? No. Does she ever ask to put a puzzle together? No. How does she handle that moment when she realizes that there is a piece of the puzzle missing? Not well. For so many things, it's hard to tell whether she enjoys an activity or whether she is just checking off the next thing on her to-do list, her schedule. So she can move on to the next thing and then the next thing. Does the enjoyment come from the activity, or is it the completion of the activity and moving through her list that gives her satisfaction. Or is it satisfaction at all or a compulsion. I could go on and on with my musings, and unfortunately for you, I have. I will pick up tomorrow with more about OCD and how it impacts and imprisons Vicki's daily life. As always, thanks for listening and being here. I hope you got some kind of satisfaction from reading this today. :) Much love to you all. xoxo
I always wonder when Vicki is completing an activity, 'Does she like it? Is she enjoying it?' That's such a hard question to answer, and I really can't. When I look at Vicki's behaviors and tendencies, I absolutely compare them to the behaviors and tendencies of her 2 siblings. I don't look at it as comparing a-typical to neuro-typical or look at it as a competition... well, Joey knew his colors and numbers by the time he was blank years old and he blank blank blank. But there are always comparisons. And that's not always a bad thing. Because for 1, I look for expectations in certain situations. You hear all the time that for children with developmental delays and autism and other conditions, that there is too much focus on what they can't do, and not enough on what they can. There is too much focus on their deficits and not enough focus on their strengths. And I agree with that, to a degree. I try very hard to celebrate Vicki, in all of her uniqueness. She has taught me so much, she has so many strengths, I could fill up pages and pages and if I keep digressing on this post, I will. :) But, she also has weaknesses, as we all do. And so much time and energy is focused on goals to get her to a certain level. Is that bad? Coming from a background as a physical therapist, goals are ingrained into my thought processes. SOAP notes. Subjective. Objective. Assessment. Plan. Measurable and quantifiable goals. Yes, they are needed. They are needed to measure progress, assess whether your plan is working, or if you need to change strategies. And, bottom line, for just about anything in life, you need to prove that what you are doing is working so that the appropriate professions can get reimbursed and paid. Anyway, sheesh. Squirrel. I can't seem to actually put a complete thought together. Sorry. I was talking about looking at expectations in certain situations. Because we have so many interventions and strategies that we use with Vicki, sometimes it's hard not to get bogged down with analyzing every moment. Sometimes I have to take a step back and say to myself, what would I expect in this situation from Joe or from Ally?
For example, I started off by talking about Vicki completing an activity and wondering if she enjoyed it. Does Vicki like to do puzzles? I'm not sure. One thing I absolutely HATE completing, and I have to do this on a regular basis, is 'preference assessments'. Trying to figure out the things that Vicki prefers to do so that we can see what kind of reinforcers are meaningful. I really dislike analyzing leisure activities. Maybe I think too much about it. Ha. Me overanalyzing something. Unheard of :) I think it's an interesting question tho. What do you enjoy doing? If you didn't have the language to describe it to someone, how would someone know what you liked? Maybe looking at cues, right? Looking to see, well, first of all, if there is an activity set up at the table and you are in the living room, would you get up to complete the activity? Sometimes a question seems so cut and dry, doesn't it? For anyone, not just for Vicki, but maybe at that moment you just aren't interested, right? Sometimes you have to be in the mood to do something. Maybe at that particular moment, the thing you enjoy the most is being a lazy bum on the couch. Doing absolutely nothing. Getting lost in your own mind. Daydreaming. {As a side note, what I wouldn't give to be a fly on the wall in Vicki's daydreams.} If I had a puzzle box set out on the kitchen table and asked Joe or Ally if they wanted to come out and put a puzzle together with me, would they? They would probably moan and complain and whine about it, or they would ignore me completely and stare zombie-like at their twitter feed, or Instagram feed on their phones. Does that mean they hate puzzles? No. But, will they come out and help me? Probably. Because a lot of the time the puzzle ends up being a backdrop for conversation and enjoyment in back and forth banter. And that, that social interaction, can be a huge motivator for a lot of people. And that social interaction is something that many people crave and could be what draws Joe and Ally out to the table to do an activity with me. Is that what would draw Vicki out? Probably not. I also wanted to point out one other thing. When I was talking about preference assessments, how do you find out what someone wants if they don't have the verbal strength to scan their memory and tell you? One of the ways is to set up a field of view for the person. For example, set out a puzzle, a coloring book, and a game. See which one the person picks. But one thing you have to be careful of with Vicki, and with many people, is how you set up the choices. Sometimes Vicki will pick the one on the left side consistently. Or have some sort of pattern that she chooses from that only she knows. So, you have to vary the location of the choices. It's the same with spoken language choices. Do you want blank or blank? You always want to make sure you switch around the choices because the pattern may be that she chooses the first answer all of the time. Or it could be that she just repeats {echolalically} the last thing she hears. Ok, back to the activity.
When someone is completing an activity, you look for clues to see if they are enjoying themselves, right? Do they smile occasionally? Do they talk amicably about it? Do they stick with it? Do they seem interested in completing it? Do they actively seek it out? With Vicki, it's hard to interpret some of the clues/cues you see, and some things just don't occur at all. So, how does she put a puzzle together? She regularly completes 50 piece puzzles, and she can do a 100 piece puzzle. She does like to look at the puzzle box as she is putting the puzzle together. If I were to just put the puzzle in front of Vicki and strictly observe her, not say anything to her, or cue her in any way, she would put the puzzle together starting in the upper left hand corner of the puzzle and work systematically through the puzzle from top to bottom, left to right. Piece by piece. She wouldn't move on to the next piece until the piece that touches it directly is found and put in its place. She will work at the puzzle this way until it is all complete. She's actually really good at puzzles. She has a knack for finding the pieces and putting them in quickly. And most of the time, she just sees it. Like, she won't have to turn the puzzle piece each different way to see if it fits. She sees the piece, picks it up, and places it correctly in its spot on the first try. It's actually pretty cool to watch.
Is there a woo-hoo moment at the end of her puzzle when she triumphantly says, I did it! Come check this out! No. Have I occasionally seen a little smile tug at the corners of her mouth? Yes. Does she talk to anyone while she is completing a puzzle? Not usually, unless forced to, and you can tell she's not happy about it. Does she allow someone to jump in and help her? Not usually. And if that happens, she may yell or try to block you from assisting. Will she randomly get up on a Saturday afternoon and grab a puzzle to do? No. Does she ever ask to put a puzzle together? No. How does she handle that moment when she realizes that there is a piece of the puzzle missing? Not well. For so many things, it's hard to tell whether she enjoys an activity or whether she is just checking off the next thing on her to-do list, her schedule. So she can move on to the next thing and then the next thing. Does the enjoyment come from the activity, or is it the completion of the activity and moving through her list that gives her satisfaction. Or is it satisfaction at all or a compulsion. I could go on and on with my musings, and unfortunately for you, I have. I will pick up tomorrow with more about OCD and how it impacts and imprisons Vicki's daily life. As always, thanks for listening and being here. I hope you got some kind of satisfaction from reading this today. :) Much love to you all. xoxo
Tuesday, April 2, 2019
Day 2. Year 2019.
Thank you all for the positive feedback I got yesterday with regards to starting up my blog again. It's good to know that you don't mind reading my incoherent babbling, and maybe even missed it a little bit. There are so many topics that I want to talk about, it's hard for me to narrow it down to just one thing right now. You know the phrase, "6 Degrees of Kevin Bacon (separation)"? :) How it theorizes that everyone is connected to one another with 6 or fewer social connections? It's a cool concept; it always seems like I am saying, 'wow. what a small world!' Especially in the age of social media. Looking at your friend's friends list. Oh, hey, we have this mutual friend in common. How do you know him/her? Anyway, that's how I feel when I think about autism. There are so many comorbid diseases and disorders that go hand in hand with autism. Sometimes they appear during puberty, other times because of an infection, and sometimes they just appear out of the blue. So, in my mind, it makes sense that the universal symbol for autism is a puzzle piece. There are so many sides to each piece of a puzzle.
I love a good puzzle. I just wish I could get one of those cool puzzle coffee tables. Have you seen them? You can lay out all of your puzzle pieces, or put some of them in pull out drawer, and push them out of the way for awhile. Then when you are finished for the day, there are 2 hinged wood pieces that fold over and cover the puzzle up until you are ready to try it again. Puzzles to me are highly frustrating and super satisfying at the same time. How do you put your puzzles together? I like to start with the outside and get a good solid frame together. Then I try to group like pieces together, like colors, like sizes.... I love the easy pieces you can just eyeball. The ones where maybe there's a face or some writing that you can just click together without even thinking. Once the easy things are done, I usually sit and stare at the puzzle for what seems like forever. I'll take a piece and flip it every which way, convinced that it belongs there. And man, it looks like it almost fits, but then it doesn't. And then there's another piece that is just a tad bit different, and that doesn't fit either. By this time I am usually swearing. And getting pretty grumpy. I have to stand up and move around a bit. Sit in a different chair, because things look different from different angles. Eventually, I finish the puzzle, but I always have help doing it. Probably because it sits on my kitchen table, and we can't really eat there, or do anything there until the puzzle is completed. Mark is really good at puzzles. He's an engineer, so there's that. He has so much patience. He will keep at it far longer than I can sit still for. Joe will swing by the table and nonchalantly find a piece randomly that I've been looking for for a long time. Ally will come out and work through it tediously, and sit by me and chat while I am working on it. And that stinker always shows up when there are only 2 or 3 pieces left to put in.{I will talk about Vicki and how she puts puzzles together tomorrow. It's utterly fascinating.}Sometimes we all sit at the table together. Sometimes we prefer to work at it alone. See where I am going with this?
Puzzles are hard. Puzzles can be frustrating. Puzzles force us to think about how things are connected. Puzzles force us to work together. And puzzles can be extremely satisfying. I will say, however, that one of the most frustrating things about a puzzle, is the chance that you are missing the last piece. Oh, the horror! I'm joking, well, kind of, but doesn't it just make you so mad? Did I drop it? Cue searching the floor with a flashlight for hours. Did the dog eat it? Or, did it just not come with that piece? Ugh, what was the point of doing the puzzle in the first place if it doesn't all fit together like a perfect picture? But, oh, when you finish a particularly difficult puzzle that took a really long time... don't you just want to look at it forever? Heck, we've mod-podged them and framed a few that we were really proud of.
I would be lying if I said that I didn't experience every one of those above-mentioned feelings over the years as we've puzzled our way through the world of autism, the world of Vicki. It can be hard. It can be frustrating. Sometimes I feel like I am alone. Many times I've had to take a step back and look at things from a different perspective. Sometimes it seems like nothing will fit together. I cry. I get mad at myself. But, man, the satisfaction. The joy. The unity that it brings. The beauty. It's all there too. And every piece, every single piece we put together is a triumph. We celebrate it all. And the cool part to me.... is that every time we put a puzzle together, we are always willing and excited to do a new puzzle. No matter if we rip that old puzzle apart, or if we hang it on the wall. We buy new, harder puzzles. More complex. And many times we will put the old puzzles together, again and again.
Many times you can find me sitting at my desk in front of the computer in the middle of the night, looking at a document that I created a few years ago. A complex medical document full of information on Vicki: her history, her doctors, her lab work, her x-rays, her EEG's, her MRI's, her ER visits, her hospitalizations, her sleep studies, her endoscopy results, her seizures, her medicines...... you get the picture. She has seen so many specialists over the years, and so many new ones that we have yet to schedule. Sifting through all of the results, and sharing information with everyone who needs to know, is a full-time job. At every doctor appointment, every school IEP, every new assessment, you can find me wearing my green paisley backpack with my binder tucked safely inside of it. I made a pretty cover, have the pages in page protectors, and even created a table of contents so I can easily find the answer to 'when did this happen?'. Currently, it is 78 pages long. It's my puzzle in written form. But that binder, it in no way sums up Vicki. Vicki is so much more than that complex sea of written words and numbers and results. Vicki is our everything. She is the beautiful picture on the front of that puzzle box that you just can't wait to enjoy. You have to savor that picture and look at it constantly. Enjoy it for what it is. Marvel at the beauty of it. At the uniqueness of it. At the completeness of it. Because even though the puzzle pieces may be fragmented, it's all there. You just have to be willing to spend the time and have the patience and the dedication to work on that puzzle, piece by piece, every day. It is so worth it all.
When I started writing today, I had really meant to talk about how everything is connected. How autism doesn't stand alone, not with Vicki, and not with many families that deal with the diagnosis of autism. But, my ramblings kind of got away from me. Sorry. :) Some days I yearn for the distant memory of just a plain ole autism diagnosis. Was that easy? No. But, just when you think you put that 500 piece puzzle together, you find a 1,000 piece one. Hey, here's a piece of the puzzle called epilepsy. Check. Here's another one called every possible GI issue you could have. Reflux. Check. Constipation. Check. Diarrhea. Check. All of the above all at the same time. Check. Here's PANDAs. Oh man. Check. Now for a particularly difficult piece, OCD and crippling anxiety. Check. Incontenence. Check. Sleep disorder. Check. Trichitellomania. Check. Scoliosis. Check. Random broken leg that took over 6 months to start healing. Check. New meds. Check. If you all have any specific questions about any of the above puzzle pieces, please feel free to reach out. I'm going to try to talk in detail about some of the more difficult aspects of our current puzzle that we are working on.
I hope that by reading this blog, you don't just feel like you wasted 10 minutes reading a bunch of nonsense, but that you can relate to it. That even though you might not be connected to one piece of the puzzle, maybe you can relate to another. Or know someone who knows someone that can. Maybe you learn a bit more about our family, or about specific disorders. I hope so. And I hope it helps you as you put together your own puzzles on a daily basis. Everyone has a puzzle sitting out on their kitchen table. And so often, that sky in one particular puzzle has what seems to be a zillion different shades of blue. Take a breathe and keep working at it. Ask for help when it gets to be too much. Or be that help to someone else's puzzle. Take the time to sit down beside them and just listen to them swear at the puzzle. Offer to be a distraction. Trade seats for a second. But never stop working on it. Much love to you all. xoxo
I love a good puzzle. I just wish I could get one of those cool puzzle coffee tables. Have you seen them? You can lay out all of your puzzle pieces, or put some of them in pull out drawer, and push them out of the way for awhile. Then when you are finished for the day, there are 2 hinged wood pieces that fold over and cover the puzzle up until you are ready to try it again. Puzzles to me are highly frustrating and super satisfying at the same time. How do you put your puzzles together? I like to start with the outside and get a good solid frame together. Then I try to group like pieces together, like colors, like sizes.... I love the easy pieces you can just eyeball. The ones where maybe there's a face or some writing that you can just click together without even thinking. Once the easy things are done, I usually sit and stare at the puzzle for what seems like forever. I'll take a piece and flip it every which way, convinced that it belongs there. And man, it looks like it almost fits, but then it doesn't. And then there's another piece that is just a tad bit different, and that doesn't fit either. By this time I am usually swearing. And getting pretty grumpy. I have to stand up and move around a bit. Sit in a different chair, because things look different from different angles. Eventually, I finish the puzzle, but I always have help doing it. Probably because it sits on my kitchen table, and we can't really eat there, or do anything there until the puzzle is completed. Mark is really good at puzzles. He's an engineer, so there's that. He has so much patience. He will keep at it far longer than I can sit still for. Joe will swing by the table and nonchalantly find a piece randomly that I've been looking for for a long time. Ally will come out and work through it tediously, and sit by me and chat while I am working on it. And that stinker always shows up when there are only 2 or 3 pieces left to put in.{I will talk about Vicki and how she puts puzzles together tomorrow. It's utterly fascinating.}Sometimes we all sit at the table together. Sometimes we prefer to work at it alone. See where I am going with this?
Puzzles are hard. Puzzles can be frustrating. Puzzles force us to think about how things are connected. Puzzles force us to work together. And puzzles can be extremely satisfying. I will say, however, that one of the most frustrating things about a puzzle, is the chance that you are missing the last piece. Oh, the horror! I'm joking, well, kind of, but doesn't it just make you so mad? Did I drop it? Cue searching the floor with a flashlight for hours. Did the dog eat it? Or, did it just not come with that piece? Ugh, what was the point of doing the puzzle in the first place if it doesn't all fit together like a perfect picture? But, oh, when you finish a particularly difficult puzzle that took a really long time... don't you just want to look at it forever? Heck, we've mod-podged them and framed a few that we were really proud of.
I would be lying if I said that I didn't experience every one of those above-mentioned feelings over the years as we've puzzled our way through the world of autism, the world of Vicki. It can be hard. It can be frustrating. Sometimes I feel like I am alone. Many times I've had to take a step back and look at things from a different perspective. Sometimes it seems like nothing will fit together. I cry. I get mad at myself. But, man, the satisfaction. The joy. The unity that it brings. The beauty. It's all there too. And every piece, every single piece we put together is a triumph. We celebrate it all. And the cool part to me.... is that every time we put a puzzle together, we are always willing and excited to do a new puzzle. No matter if we rip that old puzzle apart, or if we hang it on the wall. We buy new, harder puzzles. More complex. And many times we will put the old puzzles together, again and again.
Many times you can find me sitting at my desk in front of the computer in the middle of the night, looking at a document that I created a few years ago. A complex medical document full of information on Vicki: her history, her doctors, her lab work, her x-rays, her EEG's, her MRI's, her ER visits, her hospitalizations, her sleep studies, her endoscopy results, her seizures, her medicines...... you get the picture. She has seen so many specialists over the years, and so many new ones that we have yet to schedule. Sifting through all of the results, and sharing information with everyone who needs to know, is a full-time job. At every doctor appointment, every school IEP, every new assessment, you can find me wearing my green paisley backpack with my binder tucked safely inside of it. I made a pretty cover, have the pages in page protectors, and even created a table of contents so I can easily find the answer to 'when did this happen?'. Currently, it is 78 pages long. It's my puzzle in written form. But that binder, it in no way sums up Vicki. Vicki is so much more than that complex sea of written words and numbers and results. Vicki is our everything. She is the beautiful picture on the front of that puzzle box that you just can't wait to enjoy. You have to savor that picture and look at it constantly. Enjoy it for what it is. Marvel at the beauty of it. At the uniqueness of it. At the completeness of it. Because even though the puzzle pieces may be fragmented, it's all there. You just have to be willing to spend the time and have the patience and the dedication to work on that puzzle, piece by piece, every day. It is so worth it all.
When I started writing today, I had really meant to talk about how everything is connected. How autism doesn't stand alone, not with Vicki, and not with many families that deal with the diagnosis of autism. But, my ramblings kind of got away from me. Sorry. :) Some days I yearn for the distant memory of just a plain ole autism diagnosis. Was that easy? No. But, just when you think you put that 500 piece puzzle together, you find a 1,000 piece one. Hey, here's a piece of the puzzle called epilepsy. Check. Here's another one called every possible GI issue you could have. Reflux. Check. Constipation. Check. Diarrhea. Check. All of the above all at the same time. Check. Here's PANDAs. Oh man. Check. Now for a particularly difficult piece, OCD and crippling anxiety. Check. Incontenence. Check. Sleep disorder. Check. Trichitellomania. Check. Scoliosis. Check. Random broken leg that took over 6 months to start healing. Check. New meds. Check. If you all have any specific questions about any of the above puzzle pieces, please feel free to reach out. I'm going to try to talk in detail about some of the more difficult aspects of our current puzzle that we are working on.
I hope that by reading this blog, you don't just feel like you wasted 10 minutes reading a bunch of nonsense, but that you can relate to it. That even though you might not be connected to one piece of the puzzle, maybe you can relate to another. Or know someone who knows someone that can. Maybe you learn a bit more about our family, or about specific disorders. I hope so. And I hope it helps you as you put together your own puzzles on a daily basis. Everyone has a puzzle sitting out on their kitchen table. And so often, that sky in one particular puzzle has what seems to be a zillion different shades of blue. Take a breathe and keep working at it. Ask for help when it gets to be too much. Or be that help to someone else's puzzle. Take the time to sit down beside them and just listen to them swear at the puzzle. Offer to be a distraction. Trade seats for a second. But never stop working on it. Much love to you all. xoxo
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