Here we are after walking in the Alaska Walk for Autism with the Behavior Matters team.
I just recently I read a fantastic book called " The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs". The book is filled with wonderful essays from parents of children with all sorts of special needs, from autism to ADHD and beyond.
I first wrote about Dylan's Austism Spectrum Disorder in this lengthy post back in February. But, I never really wrote about how we, as parents, feel and deal with his day to day highs and lows. Reading "The Elephant in the Playroom" really made me think about those highs and lows. And also really made me think about just how good we have it with Dylan. How much worse things could be. I was inspired by the parents' essays and learned some good tips about education and philosphy of life.
One of the most beautiful things I learned was to dive into Dylan's world more than I do. Here is a quote from the essay "Dutch Boy" by Anna Perera: "When I first learned of his diagnosis, I was determined to pull him into my world. I sat endlessly trying to make him speak, make him look, make him do. And then slowly I began to realize that his world is beautiful too. So I stopped trying to yank him into my world and instead tried to enter his."
I love the concept of joining Dylan in his world. I think I already do this more than I know. And when I get frustrated or down, I just remember that his world is beautiful too, and I can be a part of that. That gives me strength. Dylan's world is full of letters and numbers and words and songs. He likes to recite the alphabet and words that go with each letter. He likes the alphabet sounds. He likes anything to do with letters and numbers. And as much as that can get old to us, it's his world.
For us, the downs of an autism spectrum disorder are more annoyances for us than anything. Dylan perseverates (which means obsesses) on lots of things that change from week to week. Usually they are scripts (repeated words or phrases) from the computer (we let him do Starfall.com which is all about reading and math), or from books (or books on Starfall...he's recently discovered their library online). He also uses kids apps on my iPad and he will perseverate on those as well. For instance, there is an app called Clicky Sticky that is a virtual sticker app. They have different scenes (like the ocean, space, dressup, dinosaurs) and you can drag stickers onto the scene. He likes to do this and has made up his own games to do with me or with Denny. He'll drag a sticker down and say "What's this Mommy?"* And I'll tell him. And if I say something different than what I've said before he'll get upset and want to start all over. Which is a recurring theme in our house. He knows in his head what he thinks is the right way and he doesn't like you to be wrong. For that matter he doesn't like to be wrong either. And this is frustrating not only for him but for us as well. When he's in good spirits, sometimes you can move past the mistakes (which happened this morning..yay!). He likes to do these sorts of "games" over and over and over and over and over. And as much as I love interacting with him in this way (joining his world), it also can drive me bonkers. And I have to confess it drives me crazy more often than not....probably because I'm not getting a lot of sleep these days..which leads to an impatient mommy.
*(The "What's this Mommy?" game started out with him pointing and saying "I don't know". I'd prompt him to say "What's this Mommy?" and we'd go through that little routine a lot. Finally, he started doing "What's this Mommy?" every time. Which is awesome...especially since he's using that phrase in otherplaces...not just when we play that game.)
He's finally learned the word "no". Which is good and bad. When he doesn't want to do something, he can't just say "no". It has to be a very dramatic bad-tone-of-voice "NO!". Even for something super simple like asking to help put his pants on. This can escalate when he's tired or hungry into a tantrum. Which leads to the sad face....he cries and says "Do you want a sad face?" and well, it's very sad. Tara, his ABA tutor can ignore it and he'll usually stop. But we don't get off the hook that easily. Some days, we don't hear about sad faces at all. Today has been one of those...probably because I'm letting him do whatever he wants since he's sick.
Unlike typical kids, you can't ask Dylan what he did today. You have to be very specific in the question you ask. So, instead of "What did you do at school today?" (which has only been answered maybe once when I've asked it) I have to ask "What song did you sing at school today?" or "Who did you play with at school today?". Most days he gives the same answers as part of his script. And some days he surprises me and answers with something different. Talking to Dylan a lot of the time can be like talking to yourself. He tends to live in his own little world and not pay attention to what you are saying. At least that's what it seems like. A lot of times he is listening, he just doesn't respond. This can be very hard to explain to other children who really want to interact with him. Or to those kids who don't understand that he thinks differently (for instance: Dylan really likes to line up letters and numbers and was given a set of them at a Christmas party. Some of the other kids came over and messed up his alphabet order and picked up some of the letters. It was past Dylan's bedtime and it really upset him. I tried to explain to them that "see, he's crying...please don't mess with his letters" and a few of them picked up letters again after I asked them not too. Meanwhile, Dylan is sooo not happy. So, I stood guard until he was finished and we could leave.) He really tends to tune other kids out and needs facilitation when they try to initiate communication with him. This makes me worry about bullies (like the incident above...which wasn't even about bullying but about little boys being little boys). Luckily, so far, most other kids really like him anyway...especially the little girls. He does have those lovely brown eyes and that amazing dimple.
I do wish somedays that I could get him to sit and do a craft with me like he used to when he was younger. Some days I can. Yesterday I tried to get him to paint with me and he was not interested at all. And I know why now, because he's sick. Poor little guy was up last night with quite a fever and is coughing up a storm today. When he's sick, his "behaviors" tend to get worse and he really sticks to the things that make him happiest. Which doesn't include painting with mommy. So, I'll try again tomorrow if he's feeling better, we'll see how it goes. It's hard not to get frustrated when you want to do something with him and he doesn't want to. Then I tell myself that he's a little person with his own wants and needs and I should respect that as much as I can.
Denny tends to really worry about how things will be for Dylan when he's a teenager or when he's an adult. I, on the other hand, stick to the present and what we are doing tomorrow and what about school for the next year. We really have to remember that he is only 4 and will change and grow as he gets older and more mature. For now, it's just amazing that he's reading and writing and memorizing multiplication tables (yes, he is....he found them on starfall.com and started memorizing their little multiplication songs). He really does amaze me constantly with his memory and his artistic skills. He likes to copy the pictures he sees on flash cards or on the computer. He types words and scripts that he's learned. He types words from books. He is a little sponge ready to learn.
Which brings me to the highs of life with Dylan. He's a loving boy who loves to give hugs and squeezes. He'd like nothing better than to spend time on the big bed with me or Denny getting cuddles and tickles and singing songs. He so loves to sing songs. With a memory like his, he has quite the database of songs to choose from. This can cause problems when he asks us to sing something he learned at school or on the computer and we have no idea how it goes. Sometimes though, we can ask him to sing it for us instead and he will. When we are not at home, he is a good listener. I don't have to worry about him running away from me in a store. He likes to be nearby and holds my hand. He loves being outside in nature and we have lots of fun doing nature walks. He also loves jumping on our neighbors trampoline. Especially when someone bigger jumps next to him and makes him "pop like popcorn". So, after school we've been spending the nice days on the trail near our house or at a park with friends. We'll be doing more of that once school is out.
As for having a little sister, he's doing pretty well with that now. He looks at her every so often and checks her out. The other day he was sitting beside me while she was nursing and very gently touched her head without me prompting him to. When she was napping in the swing one day and I had turned it off when he was out of the room, he came back in and tried to make it go again. I do see some jealousy here and there. Mostly in the form of him wanting to pull me in the other room. Or him coming upstairs to ask me to come downstairs when I'm changing her diaper. I hope one day he'll learn that when she is napping is prime mommy-Dylan time. For now, I just know that he's so full of love, that as she gets older and more interactive, he'll be an excellent big brother. Also, maybe she'll be a typical kid and he can learn from her as she develops.
School is out on Thursday and we've opted not to do an Extended School Year. Mainly because he'd be in a different classroom with different kids and different teachers. I just kinda decided that would be too much change and too much trouble. His ABA program is going to be doing some group sessions during the summer which should help with social skills. What this really means is that we'll have afternoons free for more time at the park and with friends.
So, to sum it all up: Some days are frustrating. Some days are really hard. Some days, we both feel sad. And some days, I'm really impatient (most of these days are the ones where I got a really bad night of sleep). But, most days we're happy and try to focus on the positive. And every day is full of love and hugs for our dear little guy. Even through the worst tamtrums, I just have to take a deep breath (and have him take a deep breath) and move forward. Because that's what life is all about. And because, we love our little guy for who he is...the good and the "bad" (I'm using quotes, because really, there isn't anything bad about our boy....well...except the poop. He isn't potty trained yet, and I'd say the poop is pretty bad for a large 4 1/2 year old. But that's coming...we are working on that during Denny's leave. Keep your fingers crossed for us.)