Mornin'.... I did it again... that sleep thing. :) Again... my apologies for a late post (especially to those who, during the month of April, make reading my blog part of their daily routine... you know how much I thrive on routines... and I hate messing one up!) I have to warn you... I feel like this post will be all over the place, I will try to reel my thoughts in, but already I've used way too many of these .... ..... ha ha!
I kinda feel like talking about mom guilt this morning, all the while mixing in a little bit of grief as well. Everybody, at some part of their life, has probably experienced a healthy dose of both. I know I have. And it hits me at the oddest times. It can come in gentle waves lapping at the shoreline and it can come in massive typhoons.
Let me give you an example. I was outside quite a bit yesterday doing some yard work and when I woke up a little bit ago the first thing I did was walk over to the kleenex box in the kitchen (ok, that was technically the 3rd thing I did... after peeing and making a cup of coffee). Anyway, as I was getting a kleenex out I glances over at the kids' soccer team pictures that they just got back last week. You know those little cardboard collages... one with the team picture on it and one with an individual picture... always with the kids smiling painfully and squinting because they have to look into the sun. I glance quickly at Joey's and Ally's pictures and then it hits me... the typhoon of mom guilt and grief all at once... I hate, hate, hate that there are only 2 sets of soccer pictures up. I have 3 kids. And only 2 sets of pictures. Well, at least I am already by the kleenex box and my eyes are already puffy from allergies... this little cry won't cause too much more damage.
I feel so guilty sometimes.... guilty because Vicki hasn't gotten to experience the fun of squinting into the sun to smile with her soccer team. I try, like every parent does, to treat my kids equally... you know... count the number of presents that each one has under the tree at Christmas... treat them all equally special on their birthdays... spend equal amounts of money on them for activities and for gifts. Spend equal amounts of 'quality' time with them.... Ha. You know yourself, that's just about impossible to do... I mean even just from the basic standpoint of ... Joey likes video games... Ally likes crafty things.. Which is more expensive? A new xbox game or a set of twist up crayons and a new journal. I don't want them to think I love one more than the others... It's such a fine line to walk. And there is always some guilt associated with decisions we make.
And with Vicki... there is so much guilt. I know she can't participate on a traditional recreational soccer team. I know she can't. But, man, is the guilt there this morning as I look at those 2 sets of pictures. I never want to say, 'I know she can't do it'... Because what does that say about me? I don't believe enough in my daughter? I don't have enough confidence in her? Because when I stop believing... and I stop trying... .then who will?? How do I know? How do I really know? Vicki can't tell me the activities she wants to participate in. Well... that's not true, technically. I know for a fact she loves her adaptive dance class. I know for a fact she loves cooking. I know this because there are moments, moments where I see that big, beautiful smile of Vicki's. I know that because I see that twinkle in her eyes. I know that because I see the knee slap squeal she does. I know that because she is with me.
We've had Vicki involved in special olympics in the past... So far we've tried special olympics swimming, track and field, and cheerleading. They have a soccer program, but we've never tried it yet. But over the past year or so, we've pulled back from some of those activities... Why? There are so many reasons... And I feel guilty for so many of those reasons too.... I know there was a time when she just couldn't participate. Because we couldn't even get her out of the shower in the mornings. That's improved now. So what's keeping me from doing some of these activities? I'm going to say fear, that damn fear again. It is like a big elephant in the room. That's definitely a motivator, or non-motivator for me. And also... I can just tell sometimes... Vicki gives me some clues... some body language clues that tells me she doesn't want to do something. She holds her ears. She withdraws. She scrunches up her shoulders and caves in on herself. She yells. She squeals. (And not in the good, happy squeal way). She fights us. She doesn't want to get up and participate. She sits down and won't move. It's hard. It's hard because sometimes I want her to so bad, because I've seen that moment on her face... that moment of pride in herself. That moment a few years ago when she ran her first 50 meter dash... my husband on one end and our aide on the other end of the race waiting with open arms for Vicki. Me and Joey and Ally in the stands cheering her on. Gosh, that was a hell of a moment. I remember it now. I have tears in my eyes now. That's why we try things. For that moment.
So, why not now? If I'm being completely honest, sometimes it's just easier. It's just easier not to try. After everything our family has been through in the past year, it's just easier not to try it. Because Vicki doesn't know, right? She doesn't know what she is missing... Does she? She never asks to do something. Of course, she doesn't. So I shouldn't feel guilty, right? But I do. But then, on the flip side, I would feel guilt over Joey and Ally as well. They deserve something normal. And easy. And logistically... you know as a parent, it's never easy. 2 different soccer teams, 2 sets of practices during the week, 2 sets of games on a Saturday morning... 2 different places, usually one game on one side of the county, the other on the other side... So my husband goes one way with one kid and I go the other way with the other kid. Where does that leave Vicki? Home with an aide? Working? Logistically, right now... it is impossible for us to go to 3 separate things at the same time. We need my husband there with Vicki and her aide.. She would not be able to get through a soccer practice without at least my husband and her aide... and having 3 people there would be even better. And right now... it would be torture for Vicki and for all of us to sit through a soccer practice... We will sometimes kick the soccer ball around with Vicki. She'll maybe kick it twice before she's done. And after that minute, she is done. And she will not do any more... And what would happen to Joey and Ally if we all had to go to a soccer practice that Vicki probably wouldn't participate in for more than a minute? Would they have to miss their soccer games? Would they not have anyone to cheer them on from the sidelines? I would feel guilty about that too...
I've always prided myself that we do things as a family. The 5 of us. And sometimes the 6 of us, depending if we have an aide along or not. And we try to find a balance. Some early morning soccer games we do let Vicki stay home with her aide and work. Because she is happy. And content. And other Saturday mornings we will all go to the kids soccer games, spread out a blanket and bring a princess coloring book for Vicki. And I'll prompt Vicki to yell, Go Ally! Go Joey! And she does.
Guilt and grief. They go hand in hand. Some days I can't feel one without the other. Guilt over not trying. Grief over not succeeding.
Well, today is an amazingly beautiful Saturday morning. I will tuck both guilt and grief into my pocket for the day and just try to enjoy it. And it's funny with all of the soccer talk today.. we don't have any soccer games to go to today. Joey is on a camping trip with the boy scouts, he left last night and won't be home until tomorrow... And Ally has first communion practice today, she had a soccer game during the week and doesn't have one today. No soccer today. Our afternoon is wide open after first communion practice... what will we do? What will we do? Something that hopefully won't make me feel guilty or grief-stricken... and something that will make that twinkle appear in Vicki's eyes. Yes, I live for that twinkle. And I will do everything in my mom power to put it there.
xoxo
Saturday, April 27, 2013
Friday, April 26, 2013
Day 25. Year 3.
Some days you just want a break, you know?? Just a little time out. To hit the pause button... the mute button... the power off button... Just for a minute. Everybody wants to whisper those 4 words at some point... Calgone Take Me Away...
I would love a little break from autism. Not from Vicki. From autism. Oh who am I kidding?! Just because Vicki has autism doesn't mean I can't think of her like I think of Joey and Ally. Do I want a break from Joey sometimes? Sure. Do I want a break from Ally sometimes? Sure. So, do I want a break from Vicki sometimes? Yes. I guess I do.
Does that make me a bad mother? I don't think so. I think, or I hope, it just makes me normal and human.
But here's the kicker... with autism. There is no real break. Even when the kids are at school... autism is still with me. Hovering over me, smothering me at times... The 6-ish hours that the kids are in school... I think about autism way too much. And autism plans my day way too often. I drop the kids off at school and I go home. Autism greets me. Diapers and garbage to throw out. Sheets to wash. New visuals to laminate. Doctors to call. Appointments to schedule. Medicines to order and pick up. Updates to write. Insurance to wrestle with. Research to do. Phone calls to make. Aide schedules to prepare to make sure every waking hour is accounted for and covered. Behaviors to muse over.
And this month... as much as I love writing, and as much as this blog is for me... it also becomes overwhelming. Because it makes me think of autism even more than I normally do. It makes me wrestle with feelings at 2 o'clock in the morning instead of sleeping. Ahhh....That was a pretty good pity party. Thanks! ;)
OK... back to my break. It wasn't calgone that took me away today. It was Ally. And it was much needed. I had already done my 'homework' and the day was as 'planned' as a day can be 'planned'. I had an aide scheduled to work with Vicki. I had my husband getting home and taking Joey to soccer practice, as long as traffic didn't get in the way with my plan... And as an added bonus... I asked my husband to take Vicki and her aide with him and Joey to practice at the park. The day was just too pretty to not enjoy it. I wanted Vicki to enjoy it. And with my husband there, I could breathe a little easier... I wasn't worried about Vicki dropping while walking around the track. I wasn't worried about Vicki playing on the playground. (Well... ok... even with my husband and Vicki's aide... so a 2:1 ratio for Vicki... I still worried. Just a tad bit.) In case you can't tell this about me, I like to worry. It's what I do. And I do it very well. :) I've always wondered what I was good at... I can't sing. I can't draw. and so on... But, boy can I worry. :) I am an expert worrywart. I'll take it.
Anyway... Ally took me away. Ally gave me my break today. We went to her gymnastics class... like we usually do on Thursdays... And instead of rushing right home after class (and a stop a Chick-Fil-A!) since no one was going to be home, we decided to just meander. I don't get much of a chance to meander. Or to be spontaneous. I am always planned. Always a little ball of stress. Always plotting my every move and Vicki's every move and how Vicki could/will react to a blip in the day... So today after gymnastics... Ally and I just hung out. We didn't do much... but it felt like we did everything. In reality we took an hour and went to Goodwill and to the Dollar Store. They were close by the gymnastics center and we both love a good bargain and a good find. And we found both today. And along with that, I found a little piece of myself today... and I am grateful to Ally for that.
We looked through toys. We looked through knick-knacks. We looked through clothes and purses. We looked through books and videos. And my goodness did we have fun. Discovering. Enjoying. Laughing. Smiling. Being. I let Ally try on some heels that were way too big for her. She strutted up and down the aisle with those too big pink heels on, with a scarf around her neck, and a lace/pearl choker necklace on. She was wearing her leotard and shorts from gymnastics. And she was rockin her Princess Leia hair buns today. She tried on knee high black boots. She tried on wedge sandals. She tried on dresses. We found some decorations and fabric for her Barbie house. That hour was so needed for me. And her.
I just needed some mother/daughter chill time. I needed to not have it be planned or scripted. I needed to not feel anxious. I needed to not be afraid. I just needed to let my guard down a little. And here's where I feel terrible. I needed Ally. I don't feel terrible that I needed Ally. But I feel terrible because Vicki couldn't give me that. And that is so hard for me to accept sometimes. Vicki gives me so much. But she couldn't have given me that hour that Ally did. It wouldn't have felt the same.
I know that you can't feel the same things and do the same things with each of your kids. I don't think Joey would have been able to give me what Ally gave me that hour today either. ;) But you know what I mean?? It's just so hard to love something so much, and need something so much and be grateful for something so much. And experience that blissful hour with my daughter. And it's so normal. And so... I don't know... it's so easy. And free. And easy. And at the same time... I experience heartache and grief and sadness because no matter how many pictures I could (and have) put on Vicki's visual schedule or how many social stories I could have had. Or how much I could have talked to her about it before hand... it just wouldn't be able to happen like that. (I know because I've tried. Many times. We can have moments. And I live for those moments. I really do.) It's just different. How can I be so grateful and so grief-stricken at the same time?
Since I started this post tonight, I haven't been able to get a song out of my head. So, I'll share it with you. Do you remember that sitcom in the 80's...with Nell Carter? Gimme a Break?
If not, let me refresh your memory....And you're welcome :)
Won't let em get the best of me
Wo wo wo wo...
Gimme a break the game is survival
Gimme a break and plan my arrival
Gimme a break for heaven's sake
I've got to get a piece of the cake...
Hey Gimme a break. Gimme a break.
Thanks, as always for listening... And you know what? Just singing the words to that song make me think of Vicki... No, not the gimme a break part now. I had my break. Now... I want to spend a blissful hour with my daughter Vicki. I think we'll put 'baking' on her schedule tomorrow... maybe it's time for a cake. No.. we just had cake for Ally's birthday... maybe a cheesecake. Yes. A cheesecake. I will spend a blissful hour with Vicki where she is the most happy and the most free.... in the kitchen. Discovering. Enjoying. Laughing. Smiling. Being. Yes. That's what we'll do.
xoxo
I would love a little break from autism. Not from Vicki. From autism. Oh who am I kidding?! Just because Vicki has autism doesn't mean I can't think of her like I think of Joey and Ally. Do I want a break from Joey sometimes? Sure. Do I want a break from Ally sometimes? Sure. So, do I want a break from Vicki sometimes? Yes. I guess I do.
Does that make me a bad mother? I don't think so. I think, or I hope, it just makes me normal and human.
But here's the kicker... with autism. There is no real break. Even when the kids are at school... autism is still with me. Hovering over me, smothering me at times... The 6-ish hours that the kids are in school... I think about autism way too much. And autism plans my day way too often. I drop the kids off at school and I go home. Autism greets me. Diapers and garbage to throw out. Sheets to wash. New visuals to laminate. Doctors to call. Appointments to schedule. Medicines to order and pick up. Updates to write. Insurance to wrestle with. Research to do. Phone calls to make. Aide schedules to prepare to make sure every waking hour is accounted for and covered. Behaviors to muse over.
And this month... as much as I love writing, and as much as this blog is for me... it also becomes overwhelming. Because it makes me think of autism even more than I normally do. It makes me wrestle with feelings at 2 o'clock in the morning instead of sleeping. Ahhh....That was a pretty good pity party. Thanks! ;)
OK... back to my break. It wasn't calgone that took me away today. It was Ally. And it was much needed. I had already done my 'homework' and the day was as 'planned' as a day can be 'planned'. I had an aide scheduled to work with Vicki. I had my husband getting home and taking Joey to soccer practice, as long as traffic didn't get in the way with my plan... And as an added bonus... I asked my husband to take Vicki and her aide with him and Joey to practice at the park. The day was just too pretty to not enjoy it. I wanted Vicki to enjoy it. And with my husband there, I could breathe a little easier... I wasn't worried about Vicki dropping while walking around the track. I wasn't worried about Vicki playing on the playground. (Well... ok... even with my husband and Vicki's aide... so a 2:1 ratio for Vicki... I still worried. Just a tad bit.) In case you can't tell this about me, I like to worry. It's what I do. And I do it very well. :) I've always wondered what I was good at... I can't sing. I can't draw. and so on... But, boy can I worry. :) I am an expert worrywart. I'll take it.
Anyway... Ally took me away. Ally gave me my break today. We went to her gymnastics class... like we usually do on Thursdays... And instead of rushing right home after class (and a stop a Chick-Fil-A!) since no one was going to be home, we decided to just meander. I don't get much of a chance to meander. Or to be spontaneous. I am always planned. Always a little ball of stress. Always plotting my every move and Vicki's every move and how Vicki could/will react to a blip in the day... So today after gymnastics... Ally and I just hung out. We didn't do much... but it felt like we did everything. In reality we took an hour and went to Goodwill and to the Dollar Store. They were close by the gymnastics center and we both love a good bargain and a good find. And we found both today. And along with that, I found a little piece of myself today... and I am grateful to Ally for that.
We looked through toys. We looked through knick-knacks. We looked through clothes and purses. We looked through books and videos. And my goodness did we have fun. Discovering. Enjoying. Laughing. Smiling. Being. I let Ally try on some heels that were way too big for her. She strutted up and down the aisle with those too big pink heels on, with a scarf around her neck, and a lace/pearl choker necklace on. She was wearing her leotard and shorts from gymnastics. And she was rockin her Princess Leia hair buns today. She tried on knee high black boots. She tried on wedge sandals. She tried on dresses. We found some decorations and fabric for her Barbie house. That hour was so needed for me. And her.
I just needed some mother/daughter chill time. I needed to not have it be planned or scripted. I needed to not feel anxious. I needed to not be afraid. I just needed to let my guard down a little. And here's where I feel terrible. I needed Ally. I don't feel terrible that I needed Ally. But I feel terrible because Vicki couldn't give me that. And that is so hard for me to accept sometimes. Vicki gives me so much. But she couldn't have given me that hour that Ally did. It wouldn't have felt the same.
I know that you can't feel the same things and do the same things with each of your kids. I don't think Joey would have been able to give me what Ally gave me that hour today either. ;) But you know what I mean?? It's just so hard to love something so much, and need something so much and be grateful for something so much. And experience that blissful hour with my daughter. And it's so normal. And so... I don't know... it's so easy. And free. And easy. And at the same time... I experience heartache and grief and sadness because no matter how many pictures I could (and have) put on Vicki's visual schedule or how many social stories I could have had. Or how much I could have talked to her about it before hand... it just wouldn't be able to happen like that. (I know because I've tried. Many times. We can have moments. And I live for those moments. I really do.) It's just different. How can I be so grateful and so grief-stricken at the same time?
Since I started this post tonight, I haven't been able to get a song out of my head. So, I'll share it with you. Do you remember that sitcom in the 80's...with Nell Carter? Gimme a Break?
If not, let me refresh your memory....And you're welcome :)
Won't let em get the best of me
Wo wo wo wo...
Gimme a break the game is survival
Gimme a break and plan my arrival
Gimme a break for heaven's sake
I've got to get a piece of the cake...
Hey Gimme a break. Gimme a break.
Thanks, as always for listening... And you know what? Just singing the words to that song make me think of Vicki... No, not the gimme a break part now. I had my break. Now... I want to spend a blissful hour with my daughter Vicki. I think we'll put 'baking' on her schedule tomorrow... maybe it's time for a cake. No.. we just had cake for Ally's birthday... maybe a cheesecake. Yes. A cheesecake. I will spend a blissful hour with Vicki where she is the most happy and the most free.... in the kitchen. Discovering. Enjoying. Laughing. Smiling. Being. Yes. That's what we'll do.
xoxo
Thursday, April 25, 2013
Day 24. Year 3.
You know the sound a child makes when they are coming down the stairs? The pitter-patter of their feet hitting the stairs? Thump, thump. Thump, thump, thump. Thump. Thump. Some mornings I love hearing that. Other mornings not so much... I think it totally depends on the time of the morning that I hear that pitter-patter and, of course, my mood. Some mornings the pitter-patter is slow and deliberate, like when they have to go to school... other times it's quick and playful, like on Christmas morning or their birthday... But, no matter what the occasion is, no matter what my mood is no matter what time it is... that sound is comforting to me. It's familiar. It's a new day, full of possibilities with my little loves... But yesterday morning (and my pronoun implies, that I did indeed go to sleep early again last night... sorry for the late blog post again!) the sound coming down the stairs frightened me. It didn't sound like the normal pitter-patter of my kiddos little feet. It was more like thump. thump. Thud, th th th thud, thud. Crash. And I went running. My heart was racing and I was freaking out. Ally. Ally. Are you ok? As I was running to the stairs I was holding my breath for the crying to begin. And I was holding my breath for no crying. My hands were shaking. It sounded so bad. I got to the stairs and I see Ally slowly walking down the stairs, sleepily holding onto the banister with her mickey mouse blanket draped around her. Just like every other school morning. I swept her up in my arms and hugged her and hugged her. My hands were still shaking. Are you ok Ally? Yeah, why, what's wrong Mommy? Nothing, I said. It was the oddest thing. Both myself and Joey heard the thudding on the stairs and he came running too. And she was fine. Thank goodness. I still can not figure out what happened... was there something on the stairs (sometimes we'll put things on the stairs to take up or down the stairs) that fell down and made that horrible thumping sound? Was she sleeping walking down the stairs and missed a few steps and just got up and kept going? I have no idea. It was the strangest thing. I am thankful that I didn't find her in a little heap at the bottom of the stairs... we've had our share of missing a step or two and taking a few little tumbles... and the older we all get, the harder the fall gets...
This 5 second non-event shaped my day yesterday. And made me think about what could have happened... And that made me start thinking about things I think of every once in a while then push to the back of my mind. Things that I should think about and plan for but am afraid to do so... contingency plans. We all should have them and make them.... what would we do if? What would happen if? Prepare for the unexpected. And so often I don't want to think about the unexpected because it frightens me. And there is that feeling of indestructibility. Nothing will ever happen. That wouldn't happen to me... we're all good.
But freak accidents do happen. Bumps in the road do occur. Things don't always go as planned. You would think that as much as I have to plan the day for Vicki... I would be quite the good planner. I'm not, though... Things happen and sometimes they blindside me. From the smallest of things (I am out of the spray we use for Vicki after her shower, now what?? Can we get through the day? Will she be able to finish getting dressed?) to larger things (what would I have done if Ally had fallen down the stairs?? If I had to take her to the doctor immediately? What would I have done? Vicki was still asleep in bed, she would have been expecting me to come in with her schedule and start the day like she normally does... get a shower, go to school... etc... She would not be expecting me to yank her out of bed and throw her in the car and go to the hospital... And it's these things... what would my plan be? Who could I call that could just drop everything and come over? Our family is 5 hours away. The aides that I have for Vicki live 25 minutes away. And what could anyone have done if they did come over? Vicki hasn't been able to get ready for anyone else but me in the mornings for months and months now. Her diaper would probably be soaked... Would anyone actually be able to help? Would I have been able to get Vicki in the van myself carrying a hurt Ally?) It's the unexpected bumps that I feel like I am totally unprepared for.
I start thinking about bumps in the road... and my mind wanders to more complex scenarios... Places that you don't want your mind to wander to... What would happen if I was in a car accident with the kids? I have in my ICE contact on my phone some notes about Vicki. I also have other things printed out in the van... I know these are somewhat morbid thoughts... things that just couldn't happen... right? But what would happen if rescue workers came upon Vicki and I couldn't tell them anything?
I know I've said before that Vicki has Project Lifesaver... a band around her ankle that she wears 24/7 that emits a specific frequency if she would ever wander or get lost... She's worn it on her ankle since she was 4 years old... right after the incident that I will never, ever, forget in my entire life... that has shaped so much of who I am right now... the day that Vicki did wander away and the police had to look for her. I still shake to this day with the emotions, so raw still after all these years. That kind of fear just grips hold of you, and I have never been able to shake it off completely. I check Vicki's ankle bracelet every morning with the battery tester. And last Friday the red light didn't blink like it was supposed to. That little red light that gives me a bit of peace of mind... didn't blink. I was a nervous wreck all day... even though Vicki was in front of my eyes all day (since we were at the doctor's that day anyway)... I was still nervous. I called the police department like I was instructed to and they came out when we got home and changed her battery. Here, it seems that the device rusted out from the inside and ruined the whole transmitter... We had to get a whole new device... they think the battery might have leaked or the waterproof ring didn't work... We've had little troubles here and there with this device... where the battery stops working before the 30 days... or the signal isn't very strong. And it worries me... What if? What if? What if something happens and this peace of mind back-up that I have fails when I need it the most?
And then, of course, my mind wanders to the ultimate bump in the road... what if something happened to myself or my husband? I never want to think of that... but it's irresponsible for me not to plan something... What would happen if something happened? What would happen to Vicki? (and to Joey and to Ally?) I don't think I am the only one in the world equipped to take care of Vicki. But then again, yes, I do. I can not die. We all die someday. But, me, I need to be indestructible for Vicki. That's not the best contingency plan. I know that. And me thinking that Ally had fallen down the stairs when she actually didn't forced me to think about contingency plans. What is Vicki's Autism Action Plan? With as much planning as I do, I can't answer that question. And that worries me.
Well... I need to go and listen for that pitter patter on the stairs... And pray that all goes well today... and hope that Vicki has a better day at school... I just need to get through this day.
Sorry about the heavy subject matter today... it's just been on my mind. I can't leave you with that... let me leave you with this... We watched Ice Age 4 the other day... and there's a song in it... We are. We are. Fam-i-ly. We are. We are. Fam-i-ly. Vicki was singing it. She really loves that song... And at the end of the song, I think it's the crazy aunt or grandma that sings... We are. We are. Ham-and-Cheese. And Vicki doubles over with giggles when she says that. Vicki was singing it at bedtime and when she sang the ham and cheese part, that slow little Vicki smile started spreading across her face and she thought she was hilarious. So did I . :)
xoxo
This 5 second non-event shaped my day yesterday. And made me think about what could have happened... And that made me start thinking about things I think of every once in a while then push to the back of my mind. Things that I should think about and plan for but am afraid to do so... contingency plans. We all should have them and make them.... what would we do if? What would happen if? Prepare for the unexpected. And so often I don't want to think about the unexpected because it frightens me. And there is that feeling of indestructibility. Nothing will ever happen. That wouldn't happen to me... we're all good.
But freak accidents do happen. Bumps in the road do occur. Things don't always go as planned. You would think that as much as I have to plan the day for Vicki... I would be quite the good planner. I'm not, though... Things happen and sometimes they blindside me. From the smallest of things (I am out of the spray we use for Vicki after her shower, now what?? Can we get through the day? Will she be able to finish getting dressed?) to larger things (what would I have done if Ally had fallen down the stairs?? If I had to take her to the doctor immediately? What would I have done? Vicki was still asleep in bed, she would have been expecting me to come in with her schedule and start the day like she normally does... get a shower, go to school... etc... She would not be expecting me to yank her out of bed and throw her in the car and go to the hospital... And it's these things... what would my plan be? Who could I call that could just drop everything and come over? Our family is 5 hours away. The aides that I have for Vicki live 25 minutes away. And what could anyone have done if they did come over? Vicki hasn't been able to get ready for anyone else but me in the mornings for months and months now. Her diaper would probably be soaked... Would anyone actually be able to help? Would I have been able to get Vicki in the van myself carrying a hurt Ally?) It's the unexpected bumps that I feel like I am totally unprepared for.
I start thinking about bumps in the road... and my mind wanders to more complex scenarios... Places that you don't want your mind to wander to... What would happen if I was in a car accident with the kids? I have in my ICE contact on my phone some notes about Vicki. I also have other things printed out in the van... I know these are somewhat morbid thoughts... things that just couldn't happen... right? But what would happen if rescue workers came upon Vicki and I couldn't tell them anything?
I know I've said before that Vicki has Project Lifesaver... a band around her ankle that she wears 24/7 that emits a specific frequency if she would ever wander or get lost... She's worn it on her ankle since she was 4 years old... right after the incident that I will never, ever, forget in my entire life... that has shaped so much of who I am right now... the day that Vicki did wander away and the police had to look for her. I still shake to this day with the emotions, so raw still after all these years. That kind of fear just grips hold of you, and I have never been able to shake it off completely. I check Vicki's ankle bracelet every morning with the battery tester. And last Friday the red light didn't blink like it was supposed to. That little red light that gives me a bit of peace of mind... didn't blink. I was a nervous wreck all day... even though Vicki was in front of my eyes all day (since we were at the doctor's that day anyway)... I was still nervous. I called the police department like I was instructed to and they came out when we got home and changed her battery. Here, it seems that the device rusted out from the inside and ruined the whole transmitter... We had to get a whole new device... they think the battery might have leaked or the waterproof ring didn't work... We've had little troubles here and there with this device... where the battery stops working before the 30 days... or the signal isn't very strong. And it worries me... What if? What if? What if something happens and this peace of mind back-up that I have fails when I need it the most?
And then, of course, my mind wanders to the ultimate bump in the road... what if something happened to myself or my husband? I never want to think of that... but it's irresponsible for me not to plan something... What would happen if something happened? What would happen to Vicki? (and to Joey and to Ally?) I don't think I am the only one in the world equipped to take care of Vicki. But then again, yes, I do. I can not die. We all die someday. But, me, I need to be indestructible for Vicki. That's not the best contingency plan. I know that. And me thinking that Ally had fallen down the stairs when she actually didn't forced me to think about contingency plans. What is Vicki's Autism Action Plan? With as much planning as I do, I can't answer that question. And that worries me.
Well... I need to go and listen for that pitter patter on the stairs... And pray that all goes well today... and hope that Vicki has a better day at school... I just need to get through this day.
Sorry about the heavy subject matter today... it's just been on my mind. I can't leave you with that... let me leave you with this... We watched Ice Age 4 the other day... and there's a song in it... We are. We are. Fam-i-ly. We are. We are. Fam-i-ly. Vicki was singing it. She really loves that song... And at the end of the song, I think it's the crazy aunt or grandma that sings... We are. We are. Ham-and-Cheese. And Vicki doubles over with giggles when she says that. Vicki was singing it at bedtime and when she sang the ham and cheese part, that slow little Vicki smile started spreading across her face and she thought she was hilarious. So did I . :)
xoxo
Wednesday, April 24, 2013
Day 23. Year 3.
I've been so tired lately...
How tired are you?
So tired.... that when I went to write in Vicki's potty book a half an hour after I got her ready for school, I couldn't remember if she had peed or not.. Half an hour... and I honestly couldn't remember. Wow. So I threw in the towel early last night, I didn't want to have another day stressing over if Vicki had peed or not. I kept thinking she was going to have an accident all day long. And just an FYI... in case you didn't know... when a 10 year old child doesn't pee for a long time and then has an accident, it usually requires a new pair of tennis shoes.
Vicki has a potty book. She's had a potty book for as long as I can remember. It sits on our kitchen counter everyday. It goes to school in Vicki's backpack. I started her potty book way back when we started potty training her... and that's been going on for years. Because Vicki doesn't tell us when and if she goes to the bathroom, the potty book was a way to remember and communicate with everyone who works with Vicki on a daily basis. That way we can be more alert for the potty dance if we know she hasn't gone... It's also a great way to look at trends. I can't tell you how often I've looked back in these books to see when things started happening... It's great to be able to access that history for doctors...
Potty training for any parent is a difficult process... that sometimes seem to take forever. With Vicki, it's one of the many things that ebbs and flows... that's kind of funny... flows... Anyway... I often wonder when I will be able to say that Vicki is officially potty trained. Eh. It's just a phrase. I look at that phrase and remember the countless hours that I've (and so many other people) have spent with Vicki in the bathroom, setting timers to go to the bathroom, washing clothes and cleaning up after the bathroom... And Vicki really has come so far. If you think about it... teaching a child that when you get 'that feeling' that you need to go to the bathroom. It's not an easy thing to master.
I hadn't meant for this post to become an all encompassing potty post. Sadly, I could write for hours about issues that we've had with toilet training. And I could talk for days on the subject, and seriously think I have. I have had more conversations revolve around pee and poop than I'd ever imagined I would have. But this morning I don't really want to launch into the potty training history realm.
Back to my original story... Most days, especially in the last 8 months or so, Vicki has had a really wet diaper in the mornings (enough to have to change the sheets almost every morning...) But yesterday morning, her diaper was dry. Woo hoo!! I know I've described our shower sequence in the mornings before, and I usually listen for her to pee or see her grabbing toilet paper, but sometimes Vicki is just sitting and sneakily flushes the toilet. And it's those times that I'm not really sure. So Vicki was sitting and sometimes she talks to herself.. kind of gives herself directions... She'll sit and say make yellow, make yellow. She's said that for years... one day during our intense potty training days, I had assigned a color to things... And because Vicki is very visual, she kind of latched on to the phrasing.. I think it's actually quite genius. :) So the question remained, did she make yellow? I thought about that all morning when she was at school... and was wondering if I'd get that call to drop off a new pair of shoes... I never got a call for that, thank goodness... So she must have made yellow... or she just has amazing bladder control, which I believe anyway... But I did get 2 calls from the school anyway... And yet again, I don't want to talk about that right now... I would much rather talk about pee. ;) Moving on.
Vicki was so adorable last night... It was a million little things that she did... My heart is still smiling.
Vicki was happy. The kind of happy that lights up her eyes. That little twinkle. I think it's a powerful thing to see in a child's eyes. It is a little slice of heaven to see that twinkle in Vicki's eyes.
Vicki was galloping across the living room floor last night. She was laughing. She was so free. Gosh, I love to see her like that. And I was sitting on the floor by the couch. Vicki was sitting on the couch behind me. She has this thing with feet lately. Especially my feet. Mommy feet. Mommy feet. She'll say. And I'll show her my foot and wiggle my toes and she'll squeal with happiness. She will literally stare at my feet, plop down beside me to get a closer look... fold herself in half with her head hanging off the couch just to see my feet. I joke with my husband that I need to get frequent pedicures because looking at my feet is so reinforcing to Vicki. I don't want to feel self-conscious and have icky looking toes. :) I'll say anything to justify a hour of relaxation at the salon. :)
As I was sitting on the floor beside her, Vicki reached out and started playing with my hair. I was pleasantly surprised. She doesn't usually offer a lot of contact... And she never plays with my hair. She just sat there, quietly sat there and stroked my hair. It felt so nice. Amazing really. She was so gentle and relaxed. I could even hear her hum to herself quietly, and repeat the words nice and gentle. Nice and gentle. We've used that phrase before when we would pet animals. We would take her hand in ours and hand over hand pet the animals with her and we would say 'nice and gentle.' She has taken to that phrase and sometimes when she is playing with her Layse Black Cat stuffed animal, I will see her stroking it's fur and hear her whisper nice and gentle. I was in heaven with my baby girl sitting so calmly behind me, her soft touch on my hair, her aura... so..... I can't find the word I am looking for. But it was one of those moments in time that you tuck away and keep in your heart forever. And bring it back out and remember when things seem so bleak and frustrating. I have this moment right now.
Vicki gave the BEST hugs last night at bedtime too. Real hugs. Not the fake, lean in and touch her head to our chest but doesn't use her arms to wrap around at all. That's the 'I have to' hug. I will comply but not like it. Last night she gave full on, arms squeeze more than a second hug. Ahhh.... again.... a hug like that from Vicki. Bliss. It really is. She was so fun. She was still happy and smiling. And with Vicki, when she is with you and engaged... it is like the best game of follow the leader you will ever play. We were dancing in her room at bedtime. And I would bust out some moves, and she would follow. I kicked my leg out, she kicked her leg out. We took turns spinning each other. She would lovingly gaze at my feet. :) These are the best kinds of times. I cherish these moments more than I can ever express.
Even though Vicki doesn't say a large volume of words in a day, the words she does say... they make an impact. (I could probably take a few cues from her. Ha ha... ) Clear and concise. Speaking from the heart. Nice and gentle.
The kiddos have an early dismissal from school today. What can I really accomplish in 4 hours... maybe I should just go get a pedicure and surprise Vicki. :)
xoxo
How tired are you?
So tired.... that when I went to write in Vicki's potty book a half an hour after I got her ready for school, I couldn't remember if she had peed or not.. Half an hour... and I honestly couldn't remember. Wow. So I threw in the towel early last night, I didn't want to have another day stressing over if Vicki had peed or not. I kept thinking she was going to have an accident all day long. And just an FYI... in case you didn't know... when a 10 year old child doesn't pee for a long time and then has an accident, it usually requires a new pair of tennis shoes.
Vicki has a potty book. She's had a potty book for as long as I can remember. It sits on our kitchen counter everyday. It goes to school in Vicki's backpack. I started her potty book way back when we started potty training her... and that's been going on for years. Because Vicki doesn't tell us when and if she goes to the bathroom, the potty book was a way to remember and communicate with everyone who works with Vicki on a daily basis. That way we can be more alert for the potty dance if we know she hasn't gone... It's also a great way to look at trends. I can't tell you how often I've looked back in these books to see when things started happening... It's great to be able to access that history for doctors...
Potty training for any parent is a difficult process... that sometimes seem to take forever. With Vicki, it's one of the many things that ebbs and flows... that's kind of funny... flows... Anyway... I often wonder when I will be able to say that Vicki is officially potty trained. Eh. It's just a phrase. I look at that phrase and remember the countless hours that I've (and so many other people) have spent with Vicki in the bathroom, setting timers to go to the bathroom, washing clothes and cleaning up after the bathroom... And Vicki really has come so far. If you think about it... teaching a child that when you get 'that feeling' that you need to go to the bathroom. It's not an easy thing to master.
I hadn't meant for this post to become an all encompassing potty post. Sadly, I could write for hours about issues that we've had with toilet training. And I could talk for days on the subject, and seriously think I have. I have had more conversations revolve around pee and poop than I'd ever imagined I would have. But this morning I don't really want to launch into the potty training history realm.
Back to my original story... Most days, especially in the last 8 months or so, Vicki has had a really wet diaper in the mornings (enough to have to change the sheets almost every morning...) But yesterday morning, her diaper was dry. Woo hoo!! I know I've described our shower sequence in the mornings before, and I usually listen for her to pee or see her grabbing toilet paper, but sometimes Vicki is just sitting and sneakily flushes the toilet. And it's those times that I'm not really sure. So Vicki was sitting and sometimes she talks to herself.. kind of gives herself directions... She'll sit and say make yellow, make yellow. She's said that for years... one day during our intense potty training days, I had assigned a color to things... And because Vicki is very visual, she kind of latched on to the phrasing.. I think it's actually quite genius. :) So the question remained, did she make yellow? I thought about that all morning when she was at school... and was wondering if I'd get that call to drop off a new pair of shoes... I never got a call for that, thank goodness... So she must have made yellow... or she just has amazing bladder control, which I believe anyway... But I did get 2 calls from the school anyway... And yet again, I don't want to talk about that right now... I would much rather talk about pee. ;) Moving on.
Vicki was so adorable last night... It was a million little things that she did... My heart is still smiling.
Vicki was happy. The kind of happy that lights up her eyes. That little twinkle. I think it's a powerful thing to see in a child's eyes. It is a little slice of heaven to see that twinkle in Vicki's eyes.
Vicki was galloping across the living room floor last night. She was laughing. She was so free. Gosh, I love to see her like that. And I was sitting on the floor by the couch. Vicki was sitting on the couch behind me. She has this thing with feet lately. Especially my feet. Mommy feet. Mommy feet. She'll say. And I'll show her my foot and wiggle my toes and she'll squeal with happiness. She will literally stare at my feet, plop down beside me to get a closer look... fold herself in half with her head hanging off the couch just to see my feet. I joke with my husband that I need to get frequent pedicures because looking at my feet is so reinforcing to Vicki. I don't want to feel self-conscious and have icky looking toes. :) I'll say anything to justify a hour of relaxation at the salon. :)
As I was sitting on the floor beside her, Vicki reached out and started playing with my hair. I was pleasantly surprised. She doesn't usually offer a lot of contact... And she never plays with my hair. She just sat there, quietly sat there and stroked my hair. It felt so nice. Amazing really. She was so gentle and relaxed. I could even hear her hum to herself quietly, and repeat the words nice and gentle. Nice and gentle. We've used that phrase before when we would pet animals. We would take her hand in ours and hand over hand pet the animals with her and we would say 'nice and gentle.' She has taken to that phrase and sometimes when she is playing with her Layse Black Cat stuffed animal, I will see her stroking it's fur and hear her whisper nice and gentle. I was in heaven with my baby girl sitting so calmly behind me, her soft touch on my hair, her aura... so..... I can't find the word I am looking for. But it was one of those moments in time that you tuck away and keep in your heart forever. And bring it back out and remember when things seem so bleak and frustrating. I have this moment right now.
Vicki gave the BEST hugs last night at bedtime too. Real hugs. Not the fake, lean in and touch her head to our chest but doesn't use her arms to wrap around at all. That's the 'I have to' hug. I will comply but not like it. Last night she gave full on, arms squeeze more than a second hug. Ahhh.... again.... a hug like that from Vicki. Bliss. It really is. She was so fun. She was still happy and smiling. And with Vicki, when she is with you and engaged... it is like the best game of follow the leader you will ever play. We were dancing in her room at bedtime. And I would bust out some moves, and she would follow. I kicked my leg out, she kicked her leg out. We took turns spinning each other. She would lovingly gaze at my feet. :) These are the best kinds of times. I cherish these moments more than I can ever express.
Even though Vicki doesn't say a large volume of words in a day, the words she does say... they make an impact. (I could probably take a few cues from her. Ha ha... ) Clear and concise. Speaking from the heart. Nice and gentle.
The kiddos have an early dismissal from school today. What can I really accomplish in 4 hours... maybe I should just go get a pedicure and surprise Vicki. :)
xoxo
Tuesday, April 23, 2013
Day 22. Year 3.
I'm going for a quick, light and airy post tonight. :) Partly because I am just done thinking and feeling tonight... and partly because they are so fun to write.
There is nothing better than a happy Vicki. And nothing makes Vicki happier than when 'baking' is on her visual schedule. What was on the menu tonight? Blue's Banana Muffins. :) We decided to bake this homemade concoction in those little baby bread tins, so adorable! We've tried a lot of different muffin recipes but keep going back to the recipe in the back of an old Blue's Clues book we have. Besides the yummy taste, my favorite thing about this recipe is that it is very visual and Vicki has a really easy time following it. There is a matching picture to word in each step of the recipe. And it shows the measuring cups and spoons as well. I love that Vicki is starting to read recipes! Another set of recipe books that we love are the "look and cook" books. The step by step directions and pictures that accompany them are fabulous. I think Vicki (and mommy) learn a lot from them!
We've tried to teach Vicki a lot of functional things through her love of food. Sometimes it works to our advantage, other times it does not. It's amazing how many things you can do with food to teach basic concepts to children. For example... you can start with very basic things such as colors. And shapes. And 1:1 correspondence with math items. Then you can teach categories... we have lots and lots (probably at least 100..) of laminated food cards that Vicki uses... sometimes we use the cards as reinforcers themselves... Vicki loves looking at all of the different foods. We use them for teaching new sight words, we use them for teaching categories... give me all the fruits... give me all the foods that are red... Then she moves onto more conversational items... tell me 4 fruits that are green. The first fruit she said today? Kiwi. Ahhh... I love that girl! Then she came up with grapes, watermelon, and gosh, I can't think of a fourth one right now, but she did... You can teach attributes with food... hot/cold, long/short, heavy/light, soft/hard... etc... We've taken bins of rice for sensory play and started teaching her basic fractions..filling 1 cup of rice... 1/2 cup of rice...etc... You can teach fine motor skills, gross motor skills, following 1-2-3 step directions... the list goes on and on... Sometimes the only limit is my lack of creativity.
But the thing I like the best about cooking with Vicki, and I'm sure I've said this before, is that when Vicki is cooking and baking... she is right there with me. She is engaged. She is happy. And she looks adorable in her apron. ;) And every time we are in the kitchen, Vicki surprises me with something... no matter how little it is... she is always showing me something new... she is always making decisions... And try as I might to stop her, she is always licking the bowl. :)
Like I said, Vicki listens and follows directions really well, in the kitchen. :) She knows where just about every ingredient is housed and enjoys getting each of them out. She loves dumping the ingredients in the bowl and she loves stirring. She was really into stirring tonight, and she did a good job when stirring the flour gets difficult. We got to mash up some frozen bananas for tonight's recipe; she loves doing that. And Vicki has really been using her sniffer a lot lately... she loved taking a whiff of the vanilla and the bananas. She is careful when she spoons the mixture into the pans and if I forget something, she will tell me. Tonight I almost forgot to spray the pans... and Vicki's way of alerting me was... woah. woooah. woahhhh. Mommy. Spray. Please.
Sometimes if Vicki is really excited, she will plop down right in front of the oven and I'll turn the oven light on for her. She will sit there and watch the dessert bake. :) Other times... she will happily skip into the living room and play Barbies while she is waiting.
I love the smell of a good banana bread baking. And so does Vicki. When the bread was ready to eat Vicki opened the fridge and got out the spray redi-whip. Spray redi-whip is a staple in our house. Snow storm a' coming? Get the toilet paper. Get the bread. Get the milk. And get the redi-whip! :) You know that 'Frank's hot sauce' jingle... I put that **** on everything. Vicki could do a commercial for redi-whip just like that. :) And one of the things I love to do is ask her where she wants me to spray the redi-whip. I know I shouldn't do this.... but there are certain phrases... when they come out of Vicki's mouth, you just can't help but smile... And when I ask her where she wants the redi-whip.. she'll point and say, 'right there. right there'. It is seriously one of the most adorable things ever.
Now there are pitfalls and fears in the kitchen as well that we work on. Lots of them center on safety... knowing when things are hot and not to touch them and the big one now is that she is trying to be so independent and she is so darn quick... she will reach for a knife before you even know it. And that scares the begeezers out of me. I like that word. I don't like being scared because she is so impulsive. Other things that we are working on is trying not to keep letting her open the fridge just to open the fridge and stare inside of it. I remember when I was little, my mom would hate it when I would open the fridge door and just stare inside and not know what I wanted. Vicki, well, she just likes to look in the fridge. Everything interests her in there. And when she opens the fridge for a purpose, I have no problem... but when she wants to get in the fruit bin drawer every 5 minutes to look at the mango... that does become an issue. So we came up with a little dry erase board mounted on the fridge... we have a picture of a fridge with the door open taped to it... and we have 5 boxes drawn. Every time Vicki opens the fridge for pleasure... she has to put a check mark in one of the boxes... when she gets to 5, that's it. She's done. Luckily we've only gotten to 5 once and that was right at bedtime. Maybe she is understanding it, or maybe I am too lenient. ;) That's also a possibility.
Another thing we did with food.. .is that we were noticing that she wanted to bake every night. Of course, who wouldn't want to? And if we just had the generic 'dessert' picture on her schedule she would get really upset if we offered her fruit for dessert. Because hey man, dessert is dessert. A pastry, a cookie, a brownie... Fruit, not so much. And all it took to get Vicki to eat fruit for dessert? Printing up some laminated fruit pictures to put on her visual schedule in place of the dessert picture. And when she sees that cantelope picture in the morning... oh my... she gets so excited. :) So sometimes it's the simplies of changes that can influence positive behavior.
Well, I guess this wasn't quick. But it was fun. I guess I didn't say much in this post, but there are a lot of words. I have to apologize, too, because the spell check is not working right now...
... and just like I said in my last post about food... I have a few ideas floating around that I want to write a post on soon... well, I guess it better be soon... I only have one week to go on my 30 days this year... Wow! That was fast! (I really hope you are enjoying reading my blog this month.)
I love that Vicki has discovered her passion. And I love that she lets me share her passion with her. I hope you are enjoying me sharing my passion with you. xoxo
There is nothing better than a happy Vicki. And nothing makes Vicki happier than when 'baking' is on her visual schedule. What was on the menu tonight? Blue's Banana Muffins. :) We decided to bake this homemade concoction in those little baby bread tins, so adorable! We've tried a lot of different muffin recipes but keep going back to the recipe in the back of an old Blue's Clues book we have. Besides the yummy taste, my favorite thing about this recipe is that it is very visual and Vicki has a really easy time following it. There is a matching picture to word in each step of the recipe. And it shows the measuring cups and spoons as well. I love that Vicki is starting to read recipes! Another set of recipe books that we love are the "look and cook" books. The step by step directions and pictures that accompany them are fabulous. I think Vicki (and mommy) learn a lot from them!
We've tried to teach Vicki a lot of functional things through her love of food. Sometimes it works to our advantage, other times it does not. It's amazing how many things you can do with food to teach basic concepts to children. For example... you can start with very basic things such as colors. And shapes. And 1:1 correspondence with math items. Then you can teach categories... we have lots and lots (probably at least 100..) of laminated food cards that Vicki uses... sometimes we use the cards as reinforcers themselves... Vicki loves looking at all of the different foods. We use them for teaching new sight words, we use them for teaching categories... give me all the fruits... give me all the foods that are red... Then she moves onto more conversational items... tell me 4 fruits that are green. The first fruit she said today? Kiwi. Ahhh... I love that girl! Then she came up with grapes, watermelon, and gosh, I can't think of a fourth one right now, but she did... You can teach attributes with food... hot/cold, long/short, heavy/light, soft/hard... etc... We've taken bins of rice for sensory play and started teaching her basic fractions..filling 1 cup of rice... 1/2 cup of rice...etc... You can teach fine motor skills, gross motor skills, following 1-2-3 step directions... the list goes on and on... Sometimes the only limit is my lack of creativity.
But the thing I like the best about cooking with Vicki, and I'm sure I've said this before, is that when Vicki is cooking and baking... she is right there with me. She is engaged. She is happy. And she looks adorable in her apron. ;) And every time we are in the kitchen, Vicki surprises me with something... no matter how little it is... she is always showing me something new... she is always making decisions... And try as I might to stop her, she is always licking the bowl. :)
Like I said, Vicki listens and follows directions really well, in the kitchen. :) She knows where just about every ingredient is housed and enjoys getting each of them out. She loves dumping the ingredients in the bowl and she loves stirring. She was really into stirring tonight, and she did a good job when stirring the flour gets difficult. We got to mash up some frozen bananas for tonight's recipe; she loves doing that. And Vicki has really been using her sniffer a lot lately... she loved taking a whiff of the vanilla and the bananas. She is careful when she spoons the mixture into the pans and if I forget something, she will tell me. Tonight I almost forgot to spray the pans... and Vicki's way of alerting me was... woah. woooah. woahhhh. Mommy. Spray. Please.
Sometimes if Vicki is really excited, she will plop down right in front of the oven and I'll turn the oven light on for her. She will sit there and watch the dessert bake. :) Other times... she will happily skip into the living room and play Barbies while she is waiting.
I love the smell of a good banana bread baking. And so does Vicki. When the bread was ready to eat Vicki opened the fridge and got out the spray redi-whip. Spray redi-whip is a staple in our house. Snow storm a' coming? Get the toilet paper. Get the bread. Get the milk. And get the redi-whip! :) You know that 'Frank's hot sauce' jingle... I put that **** on everything. Vicki could do a commercial for redi-whip just like that. :) And one of the things I love to do is ask her where she wants me to spray the redi-whip. I know I shouldn't do this.... but there are certain phrases... when they come out of Vicki's mouth, you just can't help but smile... And when I ask her where she wants the redi-whip.. she'll point and say, 'right there. right there'. It is seriously one of the most adorable things ever.
Now there are pitfalls and fears in the kitchen as well that we work on. Lots of them center on safety... knowing when things are hot and not to touch them and the big one now is that she is trying to be so independent and she is so darn quick... she will reach for a knife before you even know it. And that scares the begeezers out of me. I like that word. I don't like being scared because she is so impulsive. Other things that we are working on is trying not to keep letting her open the fridge just to open the fridge and stare inside of it. I remember when I was little, my mom would hate it when I would open the fridge door and just stare inside and not know what I wanted. Vicki, well, she just likes to look in the fridge. Everything interests her in there. And when she opens the fridge for a purpose, I have no problem... but when she wants to get in the fruit bin drawer every 5 minutes to look at the mango... that does become an issue. So we came up with a little dry erase board mounted on the fridge... we have a picture of a fridge with the door open taped to it... and we have 5 boxes drawn. Every time Vicki opens the fridge for pleasure... she has to put a check mark in one of the boxes... when she gets to 5, that's it. She's done. Luckily we've only gotten to 5 once and that was right at bedtime. Maybe she is understanding it, or maybe I am too lenient. ;) That's also a possibility.
Another thing we did with food.. .is that we were noticing that she wanted to bake every night. Of course, who wouldn't want to? And if we just had the generic 'dessert' picture on her schedule she would get really upset if we offered her fruit for dessert. Because hey man, dessert is dessert. A pastry, a cookie, a brownie... Fruit, not so much. And all it took to get Vicki to eat fruit for dessert? Printing up some laminated fruit pictures to put on her visual schedule in place of the dessert picture. And when she sees that cantelope picture in the morning... oh my... she gets so excited. :) So sometimes it's the simplies of changes that can influence positive behavior.
Well, I guess this wasn't quick. But it was fun. I guess I didn't say much in this post, but there are a lot of words. I have to apologize, too, because the spell check is not working right now...
... and just like I said in my last post about food... I have a few ideas floating around that I want to write a post on soon... well, I guess it better be soon... I only have one week to go on my 30 days this year... Wow! That was fast! (I really hope you are enjoying reading my blog this month.)
I love that Vicki has discovered her passion. And I love that she lets me share her passion with her. I hope you are enjoying me sharing my passion with you. xoxo
Monday, April 22, 2013
Day 21. Year 3.
I am an only child. I don't know what it's like to have a brother or a sister at all, let alone to have a sister who has autism. I don't get the sibling thing. I don't understand the dynamics of it all, the bickering, the competition, the protection or the love... It's foreign to me. But I want to talk about it tonight. I also know that I am pretty darn tired and I have a lot of paperwork and phone calls on my schedule for tomorrow... So, let's call this my intro to the sibling thing. I'll continue with parts 1 and 2 over the next few days...
Today seemed like project central at our house. Ally had a Chinese Invention poster board project to do. Joey had to finish a writing prompt for English class and put the 'finishing touches' on his 8 page life science project. And our master bathroom contractor finally came back to start to finish up our 8 year long bathroom project.
It's days like these... heck, who am I kidding, it's EVERYday that I feel like there is not enough of my time to go around to everyone. I look back at the day and think, I don't remember sitting down at all, I feel like I was constantly helping someone do something, and yet, I feel like I did nothing and no one got all the attention and help that they needed. I'm sure all parents feel that way. Here's that word again, inadequate. Kids are needy. Sometimes I feel so overwhelmed with their needs. And I never feel like I give enough, do enough, can be enough for what they need.
I am so thankful that my husband is there to give everything he has as well. And I am thankful that we can have aides in our house to give everything they have to Vicki and to our family as well. You know when you have lyrics in your head that you just can't stop singing... that's me right now....And it goes a little somethin' like this...Tag team back again check baby check baby let's begin (OK, I really don't know the words to this song... ha ha...but I'm singing my heart out anyway. ) Thank goodness for tag team parenting! When each kid needs to be the center of attention it's quite helpful to have 1:1 to 1:1 to 1:1. And even with that, it still seems like it's never enough. Even with 3 adults to 3 kids Vicki was still able to pop a Barbie shoe into her mouth today and freak us out for a second. And the list goes on and on.
Sometimes at the end of a day, I think... wow... how did we manage that? Pause for bells and whistles and deafening, thunderous applause. Everyone deserves accolades at the end of a day. Take a bow... it's not easy. I read through facebook statuses and it's always there... Coordinating how to get everything done. This one has to be here at this time, that one has to be there at the same time... It's not the same world as it was 30 years ago where the kids were just sent outside to play and came in when it got dark and they got hungry.
Sorry.... I am all over the place tonight... Bring it back ya'll, bring it back... Here we go....
When I look around... I see the indelible mark that Autism has left on my family's lives... it's everywhere. It's places that I don't even think to look. Do I blame autism for some of my shortcomings as a parent? Probably. It's easy to do. Autism is a good scape goat. Do I think if autism wasn't in our lives I would be a better parent? Maybe. But there's also the question... has autism made me a better parent? Maybe. Who knows... Would Joey be as sensitive and gentle with others as he is? Maybe. Would Ally be as.... arg... I can't think of the word... would Ally be as protective of some of her things, her toys, her food as she is? Maybe. Or is it just that sibling thing that I don't understand? Possibly...
Every situation you are put in shapes, to some degree, the person you are. Joey is fiercely protective of his sisters. Is it because of some of the things he has seen autism do to Vicki and to Ally and to us as a family? Is Ally as protective of her 'things' because of some of the things she has seen autism do... and has been on the receiving end of.
The other day, when we were all at the park for Ally's soccer practice... I was watching kids on the playground. There are so many little monkeys on the playground. Gosh, some kids can climb, and hang and swing off those monkey bars... They are so fast and so strong. And I look at Joey and to a lesser extent Ally... and I think about when they were really young...before we had an aide for Vicki... and it was just me at the playground with Joey, Vicki, and Ally. It was never relaxing. It was always stressful. I couldn't be there for Joey or for Ally because I always had at least one hand, if not both hands, on Vicki. Trying to pick her up from a tantrum, trying to keep her from running... Even as I am writing this, I can feel my pulse quicken, just remembering those times. I couldn't help them on the monkey bars because I couldn't leave Vicki. We couldn't stay at the park long, because something usually happened with Vicki. Eventually, it's just easier to withdraw. It's easier to sit in our living room with the door pulled shut and just try to survive.
If it wasn't for autism, would Joey or Ally be that little money on the playground? I know the world of what ifs are a dangerous place to go to... Maybe my kids just weren't equipped with that monkey gene. Sometimes I just wish I could have given them a real chance to find out for themselves... There are so many little things like swinging across monkey bars... that when I look at it, I see autism.
As I reread this post.. it seems a bit harsh. I just want to make sure you understand. I don't blame Vicki. I blame autism. I don't hate Vicki. I hate autism. Vicki has taught us all some very amazing life lessons. Not autism. But Vicki. My children have seen so much. And I know that they don't take for granted something as simple as going to the playground. Because it is such a big deal to us. There is always so much planning and stress... even to this day, to just go to a playground. They don't take it for granted. And neither do I. We all hear the thunderous applause when we come back from a successful trip to the playground. And we take a bow together as a family. We all do the Dora Dance. Yeah. We did it. We did it. We did it hooray. We got out of the house and walked to the playground. Yeah, We did it. We did it. :)
My apologies for posting this so late... I couldn't keep my eyes open last night... I need to run... because I think we may have pink eye in the house. Welcome Monday. :(
Oh, before I go... Here's a little Vicki-Did-It for you.... With a little help from her aide and daddy, Vicki painted her own nails!!!! They look amazing! I was watching the concentration she had when she was applying the polish... and the satisfaction she had when she finished a nail. Priceless. Oh, and did I mention that Vicki painted her nails pink?! She used to only allow 'red nailpolish' on them. Now, this wasn't the whole nail polish exchange... but this is what I choose to focus on and remember. :) So... yay Vicki!!!! If you happen to see her pretty pink nails... give her a high five! She deserves it!! Whoomp there is it! Let me hear you say it!
Today seemed like project central at our house. Ally had a Chinese Invention poster board project to do. Joey had to finish a writing prompt for English class and put the 'finishing touches' on his 8 page life science project. And our master bathroom contractor finally came back to start to finish up our 8 year long bathroom project.
It's days like these... heck, who am I kidding, it's EVERYday that I feel like there is not enough of my time to go around to everyone. I look back at the day and think, I don't remember sitting down at all, I feel like I was constantly helping someone do something, and yet, I feel like I did nothing and no one got all the attention and help that they needed. I'm sure all parents feel that way. Here's that word again, inadequate. Kids are needy. Sometimes I feel so overwhelmed with their needs. And I never feel like I give enough, do enough, can be enough for what they need.
I am so thankful that my husband is there to give everything he has as well. And I am thankful that we can have aides in our house to give everything they have to Vicki and to our family as well. You know when you have lyrics in your head that you just can't stop singing... that's me right now....And it goes a little somethin' like this...Tag team back again check baby check baby let's begin (OK, I really don't know the words to this song... ha ha...but I'm singing my heart out anyway. ) Thank goodness for tag team parenting! When each kid needs to be the center of attention it's quite helpful to have 1:1 to 1:1 to 1:1. And even with that, it still seems like it's never enough. Even with 3 adults to 3 kids Vicki was still able to pop a Barbie shoe into her mouth today and freak us out for a second. And the list goes on and on.
Sometimes at the end of a day, I think... wow... how did we manage that? Pause for bells and whistles and deafening, thunderous applause. Everyone deserves accolades at the end of a day. Take a bow... it's not easy. I read through facebook statuses and it's always there... Coordinating how to get everything done. This one has to be here at this time, that one has to be there at the same time... It's not the same world as it was 30 years ago where the kids were just sent outside to play and came in when it got dark and they got hungry.
Sorry.... I am all over the place tonight... Bring it back ya'll, bring it back... Here we go....
When I look around... I see the indelible mark that Autism has left on my family's lives... it's everywhere. It's places that I don't even think to look. Do I blame autism for some of my shortcomings as a parent? Probably. It's easy to do. Autism is a good scape goat. Do I think if autism wasn't in our lives I would be a better parent? Maybe. But there's also the question... has autism made me a better parent? Maybe. Who knows... Would Joey be as sensitive and gentle with others as he is? Maybe. Would Ally be as.... arg... I can't think of the word... would Ally be as protective of some of her things, her toys, her food as she is? Maybe. Or is it just that sibling thing that I don't understand? Possibly...
Every situation you are put in shapes, to some degree, the person you are. Joey is fiercely protective of his sisters. Is it because of some of the things he has seen autism do to Vicki and to Ally and to us as a family? Is Ally as protective of her 'things' because of some of the things she has seen autism do... and has been on the receiving end of.
The other day, when we were all at the park for Ally's soccer practice... I was watching kids on the playground. There are so many little monkeys on the playground. Gosh, some kids can climb, and hang and swing off those monkey bars... They are so fast and so strong. And I look at Joey and to a lesser extent Ally... and I think about when they were really young...before we had an aide for Vicki... and it was just me at the playground with Joey, Vicki, and Ally. It was never relaxing. It was always stressful. I couldn't be there for Joey or for Ally because I always had at least one hand, if not both hands, on Vicki. Trying to pick her up from a tantrum, trying to keep her from running... Even as I am writing this, I can feel my pulse quicken, just remembering those times. I couldn't help them on the monkey bars because I couldn't leave Vicki. We couldn't stay at the park long, because something usually happened with Vicki. Eventually, it's just easier to withdraw. It's easier to sit in our living room with the door pulled shut and just try to survive.
If it wasn't for autism, would Joey or Ally be that little money on the playground? I know the world of what ifs are a dangerous place to go to... Maybe my kids just weren't equipped with that monkey gene. Sometimes I just wish I could have given them a real chance to find out for themselves... There are so many little things like swinging across monkey bars... that when I look at it, I see autism.
As I reread this post.. it seems a bit harsh. I just want to make sure you understand. I don't blame Vicki. I blame autism. I don't hate Vicki. I hate autism. Vicki has taught us all some very amazing life lessons. Not autism. But Vicki. My children have seen so much. And I know that they don't take for granted something as simple as going to the playground. Because it is such a big deal to us. There is always so much planning and stress... even to this day, to just go to a playground. They don't take it for granted. And neither do I. We all hear the thunderous applause when we come back from a successful trip to the playground. And we take a bow together as a family. We all do the Dora Dance. Yeah. We did it. We did it. We did it hooray. We got out of the house and walked to the playground. Yeah, We did it. We did it. :)
My apologies for posting this so late... I couldn't keep my eyes open last night... I need to run... because I think we may have pink eye in the house. Welcome Monday. :(
Oh, before I go... Here's a little Vicki-Did-It for you.... With a little help from her aide and daddy, Vicki painted her own nails!!!! They look amazing! I was watching the concentration she had when she was applying the polish... and the satisfaction she had when she finished a nail. Priceless. Oh, and did I mention that Vicki painted her nails pink?! She used to only allow 'red nailpolish' on them. Now, this wasn't the whole nail polish exchange... but this is what I choose to focus on and remember. :) So... yay Vicki!!!! If you happen to see her pretty pink nails... give her a high five! She deserves it!! Whoomp there is it! Let me hear you say it!
Sunday, April 21, 2013
Day 20. Year 3.
Last night I paused outside of Vicki's bedroom and I heard her sobbing. It broke my heart. :( I went into her room and I could hear her sniffle. Sometimes when she cries she doesn't want comforted. I gently went over to her and she said No. No. And she put her arm up as if to ward me off. Then she curled up tighter in her covers with Layse Black Cat. I stood by her bedside for a few minutes and watched her covers rise and fall in harmony with her little sobs. :( This morning she had that look like she'd been crying a lot. Puffy eyes. Matted down eyelashes. It makes me so sad. I go back to this all the time. I wish I could help her. I wish I knew why. I wish she didn't have to cry.
I said in last night's post that I would talk about Vicki's doctor's appointment. So I will. We went back to see her PANDAS doctor... (I think I did a post a while ago about when and how she was diagnosed with PANDAS --- Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). If you've been following my blog the last few days, you may have noticed a bit of anxiety on my part. Spring has a bad track record for us. For the past few years it seems like each Spring something different happens with Vicki, different bad, not different good. One year she was in the hospital for 5 days when she had her first seizure. The next spring she had more seizures. The next spring (which was last spring) was when everything fell apart for Vicki and she ended up with the PANDAS diagnosis by late summer. So, I kind of get a little freaky every spring. I feel like I am on heightened alert. Always looking for changes and clues as to what will happen. Do I get a little hyperchondriacal? (I'm pretty sure I just made up that word. I like it. Ignore auto correct. Ignore.) Probably. Anyway... do I see things that might not mean anything? I'm sure I do. Do I see things that might mean something? I think so sometimes... Well, this week.. I feel like I've been seeing things... Little things, gradual declines. Subtle and not so subtle behavioral changes. And I think, Damn. Not again.
The thing is... I feel like Vicki is a pretty unique kid. A pretty complicated kid. (A pretty fantastic kid!) And I am not alone in my thinking... I've had multiple doctors, specialists, analysts, teachers, etc... tell me that as well. Like I was saying the other day. Nothing is black and white with Vicki. There are always so many factors to consider. And with some of her recent changes- setbacks- differences... It's hard for me to look at it and say... Yes. This is a relapse of PANDAS. Or, maybe it's just autism. Or, maybe, she is just having a bad day. Or a teenage kind of day. Whatever...
But whatever it is, some of the changes have not been so good, and I want to catch it before it spreads into other facets of her life.
What scares me about PANDAS is that Vicki is STILL on a pretty significant treatment regiment for it. She's still taking an antibiotic 3x a day (since mid-July). And she's still on some other meds related to treating the symptoms of PANDAS. And I wonder... whoa.... if this is the start of a PANDAS flair up, what the heck else can we do? And if it's not.... well, that sucks too. Because there is no pill to take to get rid of autism. Sigh.
And I think I've said this before... but the latter scenario, where Vicki's changes may not be a direct result of PANDAS... that scares the heck of out me. Because even though PANDAS is horrible, horrible, horrible... once we got to the right doctors and started the right treatment, Vicki started getting better... Slowly, but we could see it. And if it's not PANDAS and if it's just autism, well...
The PANDAS doctor set forth a somewhat different plan of care this time when we went to see her. And what makes me super nervous is that it's going to depend on a series of things to happen for us to get the treatment that we would all like to try and feel is necessary for Vicki. And like all things medical, it will depend largely on test results (of which a new test was recently approved but not likely covered by our insurance. Bye bye 900+ dollars for that). Once we get our doctor to write the script for the test, and find a lab that will draw the blood and send it off, we will have to wait, of course, for the results. If there is no significant finding, then... well... that's about it. If there is a significant finding, then we start the insurance dance to get approval for IVIG. Not approved, it will run us at least 15,000 for 2 days of IVIG. And, like with most things in life, there are no guarantees... no guarantees that Vicki's labs will end up showing high enough antibody levels... there are no guarantees that insurance will cover the treatment, and there are no guarantees that the treatment will be successful. So, what I see in our future... is more tests and doctors for Vicki. :( More days off work for my husband. :( and more coordinating, calling, scheduling, faxing, writing and researching for me. (Notice my list is longer. Because that's what I do... make it seem like everything is so hard for me... me... me... me....)
And I think what scares me the most.... because for years now I've had this gnawing feeling in my gut that IVIG will do amazing things for Vicki (I think I've told you some of my hypothesises before... I had IVIG when I was pregnant with Ally...)... what if things actually pan out and Vicki gets IVIG? And nothing happens. That's been a door that we've kept propped open for years. What if it gets shut? Then what?
I guess you just keep chugging on. Keep taking it one day at a time. Keep making those Vicki-did-it lists... and keep smiling. And keep believing. And keep celebrating. And keep on keeping on.
And guess what? Vicki wasn't crying at bedtime tonight! And Vicki didn't have any poop accidents today! And Vicki went for a walk today (granted, daddy had to go to help... but still, Vicki went)! And Vicki came to Ally's soccer game and sat outside in this most awesome spring weather and colored the most beautiful princess pictures. AND we had an impromptu dinner outside on the deck (meaning it wasn't on her schedule) and she did it. She smiled. She ate her homemade pizza and salad with ranch dressing. And she enjoyed the fresh air and the spring. If I look at spring differently, if I see spring in Vicki's twinkling eyes and slow little smile and the little breeze blowing through her hair... if I think of spring in this way... maybe I won't be so scared and maybe I can just stop and take a deep breath (and then sneeze because of my pollen allergies... ha!) and keep on keeping on.
xoxo
I said in last night's post that I would talk about Vicki's doctor's appointment. So I will. We went back to see her PANDAS doctor... (I think I did a post a while ago about when and how she was diagnosed with PANDAS --- Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). If you've been following my blog the last few days, you may have noticed a bit of anxiety on my part. Spring has a bad track record for us. For the past few years it seems like each Spring something different happens with Vicki, different bad, not different good. One year she was in the hospital for 5 days when she had her first seizure. The next spring she had more seizures. The next spring (which was last spring) was when everything fell apart for Vicki and she ended up with the PANDAS diagnosis by late summer. So, I kind of get a little freaky every spring. I feel like I am on heightened alert. Always looking for changes and clues as to what will happen. Do I get a little hyperchondriacal? (I'm pretty sure I just made up that word. I like it. Ignore auto correct. Ignore.) Probably. Anyway... do I see things that might not mean anything? I'm sure I do. Do I see things that might mean something? I think so sometimes... Well, this week.. I feel like I've been seeing things... Little things, gradual declines. Subtle and not so subtle behavioral changes. And I think, Damn. Not again.
The thing is... I feel like Vicki is a pretty unique kid. A pretty complicated kid. (A pretty fantastic kid!) And I am not alone in my thinking... I've had multiple doctors, specialists, analysts, teachers, etc... tell me that as well. Like I was saying the other day. Nothing is black and white with Vicki. There are always so many factors to consider. And with some of her recent changes- setbacks- differences... It's hard for me to look at it and say... Yes. This is a relapse of PANDAS. Or, maybe it's just autism. Or, maybe, she is just having a bad day. Or a teenage kind of day. Whatever...
But whatever it is, some of the changes have not been so good, and I want to catch it before it spreads into other facets of her life.
What scares me about PANDAS is that Vicki is STILL on a pretty significant treatment regiment for it. She's still taking an antibiotic 3x a day (since mid-July). And she's still on some other meds related to treating the symptoms of PANDAS. And I wonder... whoa.... if this is the start of a PANDAS flair up, what the heck else can we do? And if it's not.... well, that sucks too. Because there is no pill to take to get rid of autism. Sigh.
And I think I've said this before... but the latter scenario, where Vicki's changes may not be a direct result of PANDAS... that scares the heck of out me. Because even though PANDAS is horrible, horrible, horrible... once we got to the right doctors and started the right treatment, Vicki started getting better... Slowly, but we could see it. And if it's not PANDAS and if it's just autism, well...
The PANDAS doctor set forth a somewhat different plan of care this time when we went to see her. And what makes me super nervous is that it's going to depend on a series of things to happen for us to get the treatment that we would all like to try and feel is necessary for Vicki. And like all things medical, it will depend largely on test results (of which a new test was recently approved but not likely covered by our insurance. Bye bye 900+ dollars for that). Once we get our doctor to write the script for the test, and find a lab that will draw the blood and send it off, we will have to wait, of course, for the results. If there is no significant finding, then... well... that's about it. If there is a significant finding, then we start the insurance dance to get approval for IVIG. Not approved, it will run us at least 15,000 for 2 days of IVIG. And, like with most things in life, there are no guarantees... no guarantees that Vicki's labs will end up showing high enough antibody levels... there are no guarantees that insurance will cover the treatment, and there are no guarantees that the treatment will be successful. So, what I see in our future... is more tests and doctors for Vicki. :( More days off work for my husband. :( and more coordinating, calling, scheduling, faxing, writing and researching for me. (Notice my list is longer. Because that's what I do... make it seem like everything is so hard for me... me... me... me....)
And I think what scares me the most.... because for years now I've had this gnawing feeling in my gut that IVIG will do amazing things for Vicki (I think I've told you some of my hypothesises before... I had IVIG when I was pregnant with Ally...)... what if things actually pan out and Vicki gets IVIG? And nothing happens. That's been a door that we've kept propped open for years. What if it gets shut? Then what?
I guess you just keep chugging on. Keep taking it one day at a time. Keep making those Vicki-did-it lists... and keep smiling. And keep believing. And keep celebrating. And keep on keeping on.
And guess what? Vicki wasn't crying at bedtime tonight! And Vicki didn't have any poop accidents today! And Vicki went for a walk today (granted, daddy had to go to help... but still, Vicki went)! And Vicki came to Ally's soccer game and sat outside in this most awesome spring weather and colored the most beautiful princess pictures. AND we had an impromptu dinner outside on the deck (meaning it wasn't on her schedule) and she did it. She smiled. She ate her homemade pizza and salad with ranch dressing. And she enjoyed the fresh air and the spring. If I look at spring differently, if I see spring in Vicki's twinkling eyes and slow little smile and the little breeze blowing through her hair... if I think of spring in this way... maybe I won't be so scared and maybe I can just stop and take a deep breath (and then sneeze because of my pollen allergies... ha!) and keep on keeping on.
xoxo
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