Friday, April 29, 2016

The Shoe Tying Song

Shoe tying is a right of passage for kids, one that is often frustratingly difficult to teach for parents. I knew early on that I wouldn't have the patience for this task, so I paid my nephew $5 to teach my oldest daughter (I had offered him $10, but he gave up so I only gave him half). I honestly can't tell you how she finished learning the process because I didn't teach her. I also have no recollection of how my middle one learned because, again, I called "not it".

Back 9 months ago, I discussed shoe tying with our BCBA because I knew that if I couldn't teach my girls, then there was no way I'd make any headway with Evan. Since then, he has been learning and practicing, and practicing, and practicing. If given enough time, and if he is in a good mood, he can now successfully tie his shoes (and has been doing so for at least 2 months). He cannot yet get his shoes on and prepare the tongue and laces, nor can he untie...those are the next steps of his instruction.

Bless those with the patience to teach these skills.

On to the rest of the story...
Last week in the car, Evan started singing a song. The words were clear and quick, and the tune was good. "Wow, Buddy", I said, "did you learn that in school?" (He can never repeat songs from school with all the words intact, so I was quite surprised and impressed by the song I heard.)

Shayna, who was with us, said, "No, he made it up".

"Sing it again", I asked.

He sung it again, exactly the same way. I was floored. He said he made it up to help himself tie his shoes. He explained that he had learned a song in school to help him remember something so he thought that if he made up a song about tying shoes then he would remember all the steps.

Seriously?

This is amazing to me on so many levels. First, that he is recognizing strategies to help himself learn. We've seen this in other ways, like when he is learning a new word he'll start repeating it to himself out loud, but this is the first time I've seen him take initiative to create a strategy. The fact that he knows he even needs strategies blows me away, and speaks volumes about smart this kid is. Second is that when given the appropriate strategy, he can speak (or sing) and remember at a rate that is commiserate with his peers (and, not to brag, but his memory for sounds is actually in the very superior range...something the school reading specialist states that she has never seen before). Proof to me that if he is given the appropriate education, this little guy can move mountains.

Before you listen to the video, keep in mind that in the car, just yesterday morning, he was trying to ask Shayna a question and the way he worded it was so messed up that neither she nor I could figure out what he was asking. It's hard to believe that the kid you will hear can struggle so immensely with communication that he will choose silence instead.

Oh, autism...you fascinating, fascinating creature...







Friday, April 22, 2016

Fun is Not Always Easy

 
I think it is really, really hard to understand the struggles of life with autism. I often blame school for Evan's daily struggles, and I do think they are partly to blame, but you know what? Just living is hard.
 
Evan has had a tough week. It's vacation, and we are often quick to blame the lack of structure for kids difficulties during break times, but I don't think that is really the full story with Evan. The picture for this blog was taken yesterday after he spent 2 hours in the afternoon on the floor - just laying there, saying nothing. If I hadn't of checked on him periodically, I wouldn't have even known he was there.
 
We must have had a tough morning, right? I'd argue that we did not. This is what we did: I took Evan for a haircut, then to the library for a cooking class (it was mostly demonstration but he stayed long enough to make his own chicken salad; he chose to leave about 3/4 of the way through), then we went to buy lunch, then finished at the playground where we stayed for no longer than 30 minutes (and I'm being generous). We were gone from the house for approx. 3 hours.
 
When we got home, he went to the bathroom and then immediately played his imagination. After that, he laid himself down. It became so painful for me to watch - this complete withdrawal from the world around him, which he does on occasion but has never done for this long - that I plopped down next to him. I didn't speak; I just put myself close enough for him to know I was there. He rolled over toward me and started playing with my hair, then holding my hands. Eventually, he wormed himself into the position in the picture where he got as much face contact as he could and started sniffing me (I've talked about this before in other blogs, where he seems to have this primal instinct to get as close to me as he can and take in my scent to soothe himself).
 
This is our vacation...pacing our way through life...a few hours of fun, followed by an afternoon and evening of recovery in the safety of our home. Some days I'm fine with it. Some days I long to be that family that can leave the house in the morning and not come home until bedtime; I get antsy to experience more from life, for both my kids and myself, but I'm stuck at home listening to Evan lose himself to the people in his imagination, whom he gets along with so much better than people in real life.
 
So, back to my point: living is hard. Just so you know.


Sunday, April 10, 2016

Autism Siblings


Just a little shout out to autism siblings on National Siblings Day. Late this morning, I went into the living room and found Evan on Shayna's lap. She told me that he had been there for 10 minutes; he wasn't talking, just moving his right hand up and down repetitively. He was mad because he couldn't watch the Green Lantern movie because it has too many bad words, and so she just sat there, quietly but supportively. She never asked for help, but just sat there patiently for as long as he needed. I don't think I even need to write how amazing that made me feel.




Thursday, April 7, 2016

A Simple Present in a 54 Pound Package

Today is my birthday and now I have to add a year to my favorite saying: I don't look a day over 43.

Evan refused to acknowledge my birthday this morning, but that was expected and not very bothersome. Ironically, he went on to give me the best gift I've gotten today and he doesn't even know it.

First, some background information...we've been working on Evan's compliance for well over a year, and more intensely since the fall. Essentially, we are giving him language to use if he doesn't want to do something so that he does not become angry. This is a slow and tedious process, one I think most days is heading backward rather than forward. The way we do this is quite simple: he is to ask for another minute if he doesn't want to comply with a task and we say, "sure", or "not right now" and then let him go back to his preferred activity the second he complies, or "not right now" and he has to comply completely. He uses this phrase all the time now, but we've still had difficulty with him following through on tasks like cleaning up after himself. Last night I seemed to have a bit of a breakthrough, though, and asked him twice to pick up trash off the floor that he put there and he instantly complied; I was beyond pleased.

Are you thinking your neurotypical child needs ABA too? Jayme and I have joked about this, so you are not alone.

This morning, Evan asked to play his imagination (his #1 favorite activity right now) before school. We only had 2 minutes before we left the house, so I told him he could but he wouldn't have much time. He said that was o.k. and started playing. Literally one minute later, I told him it was time to go and braced myself for chaos. He said, "can I have another minute?", just like I knew he would. I reluctantly replied, "not right now, Buddy, because we have to leave or Shayna will miss the bus".

He said, "o.k., no problem".

He stopped what he was doing.

He went to the car.

I've written this before, but it bears repeating, <insert fist bump here>.

Off we go to school and my day is looking good. Before I go on, you need more information about some of Evan's ABA programming...one of the things that we have been focusing on since the fall is social reciprocation. It is what it sounds like it is; Evan is being trained to identify key words in speech that cue him to reciprocate a conversation because left on his own, he won't respond. A thousand times now he's been asked, "what's your favorite xxxx?", to which he responds, "my favorite is xxxx, what is yours?". There are different variations of this that he is learning, and he is doing great with his therapists, but has yet to master it with anyone else. I know this program is simple in concept, but if you can stretch your mind and understand the social consequences for someone who never acceptably reciprocates conversations, you can see how important this skill is. Personally, Evan has spent most of his life not conversing with or answering me, so I've adapted to this over time, but our goal is, of course, for him to be able to make meaningful relationships outside of our house and to do so requires success of programs like this one.

So, Evan and I are waiting in the school drop off line and he starts talking about teachers. Out of curiosity, and for no other reason, I asked, "who is your very favorite teacher in the whole school?". He said, "Mr. XXX, what is yours?".

Close your eyes, and if you know me, just take a minute and picture my (a) shock, and (b) big smile.
Then, <insert another fist bump here>.

I actually hadn't asked looking for him to reciprocate, and I was floored when he did. This is the first time he has ever naturally reciprocated a conversation with me in this way, by asking my opinion on an on-topic fact. I don't even care that he used "what" instead of "who", or that he probably didn't care about my answer. His answer, by the way, was the man who fixes the computers.

It's the simple things in life...Happy Birthday to me :)