Day 4. Year 2020. Part 3.

     Maybe I'll get in the groove of writing as the month is ending. :)  So, onward to the final part of this 3 part thought... Back in the beginning of April, when I started writing about Ally's experience with modeling and how it intertwined with Vicki, something kind of cool happened on the first Saturday of April. Of course, as everyone is well aware, we are in the middle of a very difficult health crisis in the world, and we are doing our part being safe and quarantining. Like I kind of alluded to before, a lot of how our family life is structured is very different from other people's families. And in that regard, yes, there are still a lot of changes we have made with the quarantine, but, unfortunately, a lot of the time, we tend to self-quarantine our lives on our own terms. Over the years, we've recognized situations that are very difficult for Vicki and subsequently, our family, and we try to balance what we do to maximize everyone's comfort and enjoyment. Every family unit does that, right? Anyway, with Ally's modeling over the past year, we have definitely stepped out of our comfort zone. But always still tried to balance how we approached events to maximize everyone's comfort and enjoyment. And we always have to plan for the unexpected. A seizure, a behavior, a toileting accident, difficulty and inability to transition from one place to another. So for each event Ally has had, we've thought long and hard about how best to handle the day.

     Some days that looks like a long drive and a movie in the van for Vicki, Daddy, and her aide while I take Ally into a rehearsal. Then we would all go out to dinner, which of course everyone loves, and drive home. Other times we've done hotel stays. And still other days it's just too difficult and we have an aide come to the house to stay with Vicki for the day, after I get her up and ready. Then Vicki gets to relax on the couch with Skipper and watch Tasty food videos on her tablet. The last 6 months have been extremely busy on the weekend (pre-quarantine). There always seemed to be a rehearsal, a fashion show, a photo shoot, a model call... And, it's definitely been a challenge to make sure it runs as smoothly as possible. One of the things Vicki has always loved and feels comforted by is looking at her visual schedule when she wakes up in the morning, and then when she comes downstairs she looks at the wall calendar that I write pretty much our whole lives on. I've always color-coded activities. Blue for Joe. Red for Vicki. Green for Ally. And there has been a lot of green writing lately. Vicki looks and takes in a lot more than I ever give her credit for. I've said before how she has such an amazing memory, especially with dates and things we have done on those dates in years past.

     Sheesh. I go on and on, don't I? Anyway, with the quarantine, I've obviously crossed out a lot of previously scheduled activities, and the next few months are looking pretty bare and not too colorful. Well, on that particular Saturday in the beginning of April, she must have been looking at the wall calendar the night before, and when she woke up the first thing she said was "Fashion Show" and then "Ally". She was very frustrated that there wasn't any car on her schedule for the day or a picture of Ally (what I put on when Ally has an event).  Also, a few weeks before that I had gotten Vicki 2 dresses and a new pair of shoes that she had tried on at home. I had been planning on getting tickets to a ball here in our town. I had seen it advertised in years past and was looking forward to the day when Vicki was old enough, and in a place that I thought she might like it. This was the year I was going to do it. With timing, everything seemed right. Ally has been taking voice lessons since the fall, and it was her voice teacher that was the founder of this ball for young adults with special needs. Ally had signed up to volunteer for the whole day. We had an aide that was available and excited to attend with us. And then I found those 2 dresses. She looked so beautiful in both. Vicki would never go to a high school prom, and I thought this would be something just for her. A way for her to dress up like Ally does, a way to experience something unique. I'm telling you all of this because of course, with the quarantine, the event had to be canceled.

     So that Saturday, Vicki was asking for "Fashion Show" and she was very emphatic that day that she wear one of her beautiful black dresses. I kept telling her that we were not going anywhere for a fashion show (it's been very difficult to explain why we aren't getting in the 'red van car' like we usually did on the weekends to go for a drive.) But I did tell her that she could have a fashion show at home with Ally. Some of our flowers were starting to bloom, and I thought, why not? Let's put on a fancy dress and celebrate the day. The only time Vicki will allow make-up is on a very special day (when she used to do dance recitals, if there was a special event we were all going to, seeing Santa... those are all very special days in her book!) And that day, because she put on her fancy black dress, she let Ally do her make-up. It's so rare that this happens, but I love it so much. Ally is so gentle and sweet with Vicki. That day marked the first time ever that Vicki had a 'full face' put on. Foundation with the little spongy thing, bronzer, highlighter, the whole deal. Because Vicki tends to have specific routines (ie... she only ever allows blue eyeshadow and red lips, because that's what they were required to wear for dance recitals years ago). Well, this day, she allowed Ally to do some different colors. Ally was thrilled. Vicki did so well. Ally let Vicki try everything, touch everything, she explained everything she was doing to Vicki. Sometimes it can be a daunting task to do something different with Vicki. She has some resistance, which can be vocal or physical. But we made it through the whole process with minimal issues. And yes, there were tears in my eyes, through pretty much the whole process. It is not easy for Ally to connect with Vicki in a 'typical' sisterly way. Vicki doesn't allow much interaction. It's always been tough. But that day, the shared interest in make-up, not playing out how you would typically envision with sisters... their roles are reversed, but it was something that they enjoyed together. The younger sister leads, the older sister follows. When Ally was drawing on Vicki's eyebrows, I lost it. As most of you know, Vicki also has trichotillomania. She has significant anxiety and OCD and gosh, I think it's been 3 years now?? 3 years. Of me drawing on eyebrows for Vicki every morning. She has very minimal lashes (just some on the lower), so we couldn't do mascara, and putting lashes on is still way above our comfort level. But just seeing Ally lovingly drawing on her eyebrows, being so gentle and encouraging... I have tears even now as I type this.

     So, that pretty much sums up the day. Vicki looked absolutely beautiful. The girls had a moment together that I will never forget. We did a "Fashion Show" for Daddy and Joe and Skipper. And we had a photo shoot outside with the flowers. Although this was not what Vicki asked for, per say, we made some memories. Vicki didn't love the rest of the day. She knew that what we did wasn't what she wanted. She wanted to get in the car, go for a drive, dress up and see Ally walk in a fashion show. We made the best with what we could do. She got to wear her beautiful dress, maybe not for the ball I was envisioning this year, but there is always another day, another time.

     Ally's modeling may have taken us all out of our comfort zone, but it has given us all so much as well. It has forced us to create and be present and put all of us out there. If you remember last year,  I wrote about the first fashion show Ally did, and how the organizers were so wonderful to us to ensure a successful day for Vicki...and there are photographers who have gone out of their way to include Vicki in photo sessions with Ally. We had one photographer in particular, who had known Vicki would be in the car with Dad, waiting for Ally doing her shoot on a beach. She specifically asked about Vicki and what she liked, didn't like, how she interacted etc... And that day the photographer wanted to take some pictures of Ally and Vicki together. Yes, there were difficulties, but there were also moments that I will never forget. Funny, how currently I am now humming the theme song to The Facts of Life, (remember that show??)

"You take the good, you take the bad, you take them both and there you have the facts of life, the facts of life...."

     So, in conclusion, :) I think we are all ready to start putting colored markers on our calendar again. I believe with my whole heart that Vicki loves the events in the green marker in her own way. And I will forever be grateful that Ally can share this part of her life with her sister. It may look a little different than I imagined years ago when I had a 3-year-old and a newborn baby girl... but it makes the heart feel just as full. Love you all. Thanks for reading. xoxo

PS... I will most definitely attach a few pictures to this facebook post for you to enjoy -  that deal specifically with this post. And, if you want to follow Ally on her modeling journey, I know she would love the support... @ally.rosette (on instagram).

Next blog post is one I have been dreading writing for some time... stay tuned.

Day 3. Year 2020. Part 2.

    Better late than never, right? ;)  I've tried to sit down and write a few times, but, crazy as it seems, I feel like I've been even busier the last few weeks than usual. I typically have a lot of meetings for Vicki anyway, but it seems like they have quadrupled lately, and I feel like I'm zooming from 1 to the other. (See the play on words there? Ha.) Technology is so amazing and so frustrating at the same time. And with Vicki turning 18 in a few weeks, we've had a ton of other things to take care of (a future blog post for sure).

     Back to my Part 2. If I can remember where I left off... I was talking about decisions and how 1 decision can affect so many other aspects of your life.  BTW, thank you for the sweet, positive comments about Ally and her modeling. It is much appreciated, and the support you show for her as well, we are grateful for.

     One of the things I've learned about modeling this last year... it's not just a cute side hobby for Ally. She is very serious about it and treats it very much like the career path she wants to take with it. She's dedicated, professional, and very committed to improving her craft. It's not just "smile, say cheese." There is so much to learn, to study, to promote, to improve upon. She's invested, and she is constantly putting herself out there.

     And this is where it gets a little tricky. Those that have followed Vicki's journey for a while, remember that she's always had difficulty with transitions. And back in 2012 (seriously!!! that long ago???) she was also diagnosed with PANDAS. We thought at the time autism was difficult. Autism was a walk in the park compared to the struggles that PANDAS brought. Sorry. I need to take a second. I just feel like I was gut-punched. Thinking that it's been 8 years. 8 years. 8 years since so much more started changing for us. And it's been since 2015 (so, 5 years!!) since I've been able to take Vicki somewhere in the car by myself. Pretty much 5 years now that the only way we can get Vicki in and out of the car is if my husband is there. Do you know how scary that is for me? It's terrifying. When he has to travel for work... there are so many 'what ifs' that seem so far-fetched, but I need to be prepared for them and plan for them. Sorry, I digressed a bit... Squirrel!

     Anyway, this all relates to Ally and her modeling. For years, Ally has had to deal with things that a lot of her peers never had to think about...  Simple things, like jumping in the car for a spur of the moment trip to the store or out for ice cream. A friend asking Ally to come over and hang out. Soccer practice. A dance at school. Going to a girl scout meeting or an activity. Going to guitar lessons. None of it was easy. And a lot of the times she wouldn't even ask because she knew it would be difficult to plan for and might not be able to go. We've had an amazing support system over the years tho, friends that went above and beyond to make sure Ally was included in things. And I  had to finally swallow my pride and ask for help. Some things we were able to keep going with much help, other things people made exceptions for and worked around our home life ( ie.. Ally's guitar teacher came to our house to give her lessons) and some things Ally ended up quitting. If my husband was at work late, and we didn't have an attendant at home for Vicki, there was no way we could leave the house. Period.

     So... fast forward to Ally starting to model. One of the things Ally loves about modeling is the social aspect of it. Making connections. Meeting new people. Planning. Rehearsals. The hustle and bustle of long show days where a make-up call time is at 8 am, and the show doesn't start until 6 pm.  And, obviously, because Ally is a minor, I need to accompany her everywhere and be there for all of it.  That poses some very unique challenges. And that's where I sometimes just stop, and think, how is it possible that people come into our lives just when we need them??

     Right about the time Ally started getting booked for fashion shows and photoshoots, she was also given an awesome opportunity to go to Texas for a modeling expo where she could attend seminars, learn from others in the industry, and participate in events and competitions. Gosh, how I wanted her to be able to go and experience all of it. But, we put it out of our minds. I can't take Ally out of our house at all unless I have an aide scheduled and everything is lined up for Vicki. Vicki won't get out of bed unless I get her. So, a week in Texas... there was no way I could be in 2 places at once. Doesn't every parent wish they could at 1 time or another?! As I sadly thought about how difficult it would be logistically to do anything with Ally to foster her love of modeling... I get a text from an aide that used to work with Vicki. Throughout her college years and beyond she was a staple at our house. Even after she moved across the country, she was still a part of our lives. We were thrilled a few years ago when she moved back to VA, and she was able to come and see us from time to time. She had started working with Vicki right around the time Vic was diagnosed with PANDAS, so she's been through a lot with us. Making a long story somewhat short, the timing of her text was pretty much perfect. Over the course of a few months, she had moved back home and was free to work with Vicki. I had joked with her about the timing and how perfect it was and that she needed to road trip with us to Texas to be with Vicki so Ally could attend her modeling event. Vicki was comfortable with her because we've known her for years. And right around that time my husband took a job for a different company and he started working from home. After 18 years of commuting on I95, he was working from home. So he was able to drive us all down to Texas and work out of the hotel room for that week, while our aide and Joe helped with Vicki and I was free to be there for Ally and her events. Now, even with that, every day took massive amounts of planning and the whole team of us to make sure everything that Vicki needed from each specific person to function was accounted for. We did it. Vic got to have the hotel breakfasts that she loves and Ally got to network and participate in an event that she never thought she would be able to do. (And as a bonus, she won best in runway for her age group, whoop! whoop!).

     Almost a year later and that same aide is still with us (although I know that will change very soon, and that will be another huge bump in the road for all of us). But I am not dwelling on that yet. Right now I am just grateful for the experiences having aides that have been able to be there for Vicki when I am not able to be,  that have opened up for Ally. We've had other weekends of fashion shows and photoshoots that we've been able to attend because of our aide's availability and dedication to Vicki. And planning. Lots and lots of planning.

     Before I get distracted again, I will stop here and talk about Vicki's response to Ally's modeling in Part 3. Love you all. Here's to trying to *time* my posts a bit better. Looks like I will be writing into May. :)   Thanks for listening. xoxo

   

Day 2. Year 2020. Part 1.

Do you ever just look at a snapshot of your life, and think --- every decision, whether big or small, led me directly here. Right here. Right now. I've been thinking about that a lot lately. We've had a lot of significant changes to our lives in the past few years, and of course like everyone else, the last month as well. 

I'm a huge believer that things are put in our path at a very specific time, just when we need a change. Even if, at that specific time, you have no idea how to turn those lemons into lemonade, and you just can't understand why things are happening the way they are. Below is one example.  

I know this is a blog about autism, and about Vicki. But it's also a way for me to show how autism has affected our whole family. You will have to forgive me. I can't remember what I made for breakfast this morning, let alone what I posted in this blog a year ago, So, if this is a repeat, feel free to smile and nod and think about your grandparents telling you the same stories over and over again. Those stories must hold some special meaning. And as time goes by, the stories change a bit. Maybe because they couldn't remember exactly what happened anymore, or maybe because the passage of time gives us the gift of reflection and the things that have happened in your life take on new meaning as you understand them and reflect on them. Or you just can't remember. Either way, smile and nod. :) 

Almost 2 and a half years ago (wow, that's crazy it's been that long already!) our youngest daughter, Ally, started having some medical issues. At first, she was just feeling dizzy, and then she started fainting at school and ended up having to go to the ER a few times. Then, almost daily, I was having to go pick her up from school because of it. Long story, short... she went through a lot of testing and was eventually diagnosed with POTS (postural orthostatic tachycardia syndrome) and put on medication and changed up her lifestyle (ie... tons more water, salt, frequent breaks, more sleep, more core exercises, etc....) Along the way, she had to finish out her 7th grade school year at home. Then for 8th grade, she had a teacher come to the house for school. And this past school year, for 9th grade, we made the decision to homeschool. It was not an easy decision, but in the end, we all felt like it was the right one for Ally. Fast forward to today. She is thriving. She is completely off her medication for POTS and she knows her body and how to adjust if she has any symptoms. She loves the homeschool model we chose and has had no real disruption to her routine or schooling since the outbreak of this virus, with the exception of her brother and sister now being home too. 

When all of Ally's medical issues ramped up, Vicki was also going through a lot: a lot of seizures, a lot of behaviors, and she had broken her leg. So everything was very stressful. I wanted to give Ally a break one day. So, I talked to a friend of mine who is a make-up artist, and we planned a photoshoot for Ally. Something to take her mind off everything that was going on and just get pampered and have a day that was full of fun girly stuff, a day just for her. Think 80's glamour shots, but way cooler, and less hairspray. :) We did the photoshoot. It was absolutely perfect. Everything I wanted for Ally and more.

She came home after that photoshoot, and she was like, 'Oh, my gosh. That was the best day ever! I loved it so much! You know... I wouldn't mind doing that again sometime.' (with a sly little smile playing on her face).  And, so began her love of modeling. She hasn't slowed down since. She loves everything about it: from photoshoots to runway shows, to meeting new people and learning more about the industry.

And had Ally not been diagnosed with POTS, which eventually led to the decision to homeschool, we may have never done a photoshoot for her. And she may never have known that modeling is what she is passionate about, what she absolutely loves. But how do we pursue something that requires such a time commitment and a lot of scheduling? With Vicki's transition issues still at the forefront, and Vicki's anxiety ramping up so much, how do we try it? Because for years we've had such difficulty trying to get either Joe or Ally to activities/sports/social gatherings...

Since I'm behind a few days already on my blog posts, let's call this Part 1. Stay tuned for Part 2 (which will discuss how we have managed to get Ally to model calls and shoots and fashion shows in the throws of very difficult medical issues and behaviors with Vicki). And also Part 3, which is really interesting, because I sat down this morning to write this post before I got Vicki up for the day, and some things that went on today with Vicki relate directly to this topic. I thought it was very interesting.

And, because I am a very proud momma, some shameless promotion for Ally:
She has a public modeling page on Instagram @ ally.rosette 
and I am super proud of what she is doing. She manages it all on her own and works really hard at creating content that she is proud of. You should head over to her page and see what she posted on World Autism Day this year (she came up with the idea and the post all on her own).

Love to you all. And thanks for coming back this year to read. xoxo

Day 1. Year 2020.

Well. Hello April.

I've been back and forth on whether or not I should write this year. Clearly, as I look back on last year, and the year before, and the year before that... I don't seem to follow through with things. My last post last year was something to the effect of "I've only written for 15/30 days of April, but I really want to finish something, so I'm going to keep writing in May to finish up 30 days." Yeah, that was my last post. That clearly didn't happen. And that got me thinking about what to write about today.

First off, I wanted to say that I hope all of you are in good health and are making your way in this unprecedented time in this world with hope, love, and lots and lots of patience. I've been very overwhelmed, as I'm sure many of you are, with all of the changes, and scary reports, and closures. I've had to step away from the news and social media platforms because it gets to be so much. Too much. So I debated about posting during this time. But then I thought, why not. Maybe writing a bit will help me and who knows, maybe something I say will connect with you as well. And in these times we desperately need connections.

And there it is. Connection. Interaction. Socialization.

We've all seen what happens when that's taken away now. How we feel. The isolation.

And that makes me think of Vicki. And so many other children with autism.

Not just Vicki this last month. But Vicki's whole life.

Lack of connections. Lack of interaction. Lack of socialization. Isolation.

Wow.

How does it make you feel? And think about it. You want to go out, you want to see people, you want to interact. You just can't. And what if you couldn't talk about that with anyone? What if you didn't have the language skills to explain how you are feeling? In a very strange way, this whole world has been given a quasi-autism diagnosis. Not really, but look at the similarities.

And now some of us are given a gift of more time with family. What do we do with this time? Everyone's schedules are interrupted. (And for Vicki, and I'm sure a lot of kids and adults alike, it has been very hard to explain and a very difficult transition.) Now that our schedule has been wiped clean for the next 2 plus months, what do we do with this gift of time?

What do we prioritize? I have found myself saying more and more the last few years... I just don't have time to _____. There is never enough time to finish ______. To focus on _______. To write that letter. To reach out to _____. To call ______. To do that blog post. ;) Time has gone by too fast with the kids. As Vicki approaches her 18th birthday next month, it has hit me very, very hard. I want more time. And now I have it. I want to use it wisely.

Speaking of time, I need to run. If I don't get Vicki up in the morning and shower with her, she honestly wouldn't get up. I know it sounds kind of funny.... who wants to get up in the morning? But honestly, it's very overwhelming and scary for me. If I don't do it, she won't get up.  Seriously. And that scares the crap out of me.

Thanks for coming back this year and reading! And for those of you who are new, feel free to take a look back at previous years. Love you all. xoxo

Day 15. Year 2019

     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


   

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

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
     

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
   

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



   

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

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

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

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

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

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
   

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