Special siblings

Last monday, I was outside raking leaves with my big boy - B's older brother by 15 months. He was lamenting about the fact that all of his neighbor friends were in school. And then he about broke my heart in two when he said "B doesn't know how to play or even how to talk. I have no one to play with." Ouch. That one hurt. It was a painful reminder that he is much more aware of B's differences than we give him credit for.

I've thought about that comment a lot since then and I was able to come to terms with it when I thought about all of the kids out there who have siblings 3 or 4 years younger than them. It is years before they have a playmate. Or the only children. Or the kids who do have siblings but all they do is fight.

It still hurts. Here we have what should be an ideal situation - 2 kids of the same gender basically a year apart... a built-in playmate. And yet, that's not reality here. Sometimes the big brother tries but most of the time he just ignores little B. Fair? No.

Then on Thursday, one of the moms at preschool that supervises him at "lunch bunch" pulled me aside to tell me that my big guy has "such a tender heart" and is "such a sweetie pie". It's true - he is a gentle, sweet boy. Exactly the kind of heart that a special needs brother should have. So while it may not be fair, he is already better for it. Our job will be to foster a little extra compassion and tolerance and to temper any resentment. And maybe someday he'll be thankful for the lessons B taught him. He's teaching him much more than playing together ever could.

Today, I'll be having waffles

The most important thing we can do for B right now is to teach him the value of communication. To that end, anytime he talks, he pretty much gets what he wants. We'll of course have to scale this back (perhaps sooner than later) as he catches on but for now, nothing is too over the top. Today, he asked for waffles. I lost count at 8.  Yesterday, he ate apple bread for dinner. To be fair, his diet is far from well-balanced and healthy even on his good days. So what's the harm in a few extra waffles? He ASKED for them!! Don't tell B but we'll pretty much give him anything he wants if it means he'll learn to talk.

The power of "no"

Ask parents of most 2 and 3 year olds and they will likely have strong feelings about the word "no". At those ages, either the parents or the child (or both) are probably uttering this word almost constantly.

For me, there are a couple other words that bother me more. One is "autistic". I hate that word. You will never hear me use it. I realize it's just semantics but I view B as "having autism". It's one characteristic amongst many that make up him as a person. When he is called "autistic", it sounds like an all-encompassing label as if that defines him. I don't know if any other parents feel that way or if it even makes any sense but that's how I feel.

The other word I can't stand is "typical" and I know that I have been guilty of using that one. It's often a way of discriminating between a special needs child and one who is neurologically typical. But there is nothing "typical" about either one of my kids (or any child for that matter).

Okay, I'll get off my soapbox now and back to the topic at hand. I think B is figuring out the meaning behind no. He used it very appropriately to communicate today. I kept asking him if he needed to use the potty and he would say "no". This is totally new for him. I wanted to test it, not really believing that he knew what he was saying. We went for 4 hours between potty times when our normal schedule is 2.5 and at 4 hours, he willingly went. He also used it to refuse his lunch when it was ready, to say he didn't want to go to bed, and a couple of other times today. If he really is figuring out how to tell us what he doesn't want, this could be a huge breakthrough. AND if he actually knows when he does and doesn't have to go potty, this too would be a monumental change. We shall see.

Couple more updates: he took a bath with the help of a swimsuit. For now, that is working - at least it eliminates the screaming. Hopefully we can lose the swimsuit soon.

He "read" that Thomas book during my parent training on Friday so at least now our 2 supervisors have seen it and know I'm not crazy. I bought a couple more books this weekend that are similar so we'll see if it is just that book or if something is happening here.

Just another boring day in the life...

Good and bad

Here are some highlights from the last two days:

1. I checked with the staff and no one has read that Thomas book to B that he read/recited. = Good. Still really weird but good.

2. B FREAKED out about the bath last night. I had to hold him back (not easy - he is strong), he climbed out twice, never sat down and cried/screamed for 15 minutes solid. = bad. very bad.

3. We went to a park this afternoon for a couple of hours. B played and had fun. No meltdowns. = good. He did retreat to his stroller for a good part of it though = bad.

4. I dropped his last pacifier behind the bed and picked up 2 new ones today. My plan is to get rid of it completely once we get past our xmas plane trip since I want it on the plane. When I tried to give him the new one tonight, he rejected it. We might be all done with pacis now. = good (except for that xmas plan trip I mentioned).

5. No #2 accidents in over a week. = good.

6. After putting him to bed, I heard a lot of noise in his room. He had turned on the light and was looking at books. = mostly bad but I did like the sheepish grin he gave me when I caught him.

7. After a LOT more noise, he opened his door - meaning he figured out how to get the child lock off. He opened it, looked at me and closed it again. I guess he just wanted to try it? This could be the beginning of a lot of fun bedtime rituals. = BAD. BAD. BAD.  Gotta admire the kid's perseverance though.

Reading?

Today, I gave B a book to flip through which is something he enjoys. This was a new one - one my mom brought with her last week when they were here. I have never read it. So imagine my surprise when he started reading/reciting entire pages! "Move!" says Thomas. "Moo," says the cow. "No, no, no!" says Thomas. "Not moo. MOVE!"

He "read" about 5 pages and didn't skip a word.

Fascinating! I of course don't think he is actually reading (though I have heard of kids with autism reading before they are talking). I think he has memorized the book. What is interesting is that it can't have been read to him very many times. I'll have to check with the staff tomorrow. I think he just has an amazing memory. We have seen him pick up songs after listening just once or twice and he repeats phrases from shows (echolalia or repeating things out of context is another common part of Autism).  This weekend, he walked around saying "where are you?" and "I love you". Totally random sayings that he must have picked up from somewhere.  But this is a kid who doesn't typically use more than 1 word at a time.

Regardless, it was so cool and I can't wait to figure out how to expand on it. I've said it before but this kid is just bursting with potential and we are not going to stop until we tap into it.

Time flies when you're...

having fun? I'm not sure if that's truly the reason but time is certainly flying. It's probably more accurate to say that time flies when you are insanely busy all the time. Our days go by in the blink of an eye and we are completely beat at the end of each one. So that's my excuse for the lack of updates on the blog this month.

I don't have a lot of new updates. B continues to do better and better with verbal requesting. He does it spontaneously a lot of the time now. He always says "come" now rather than just pulling me around. His goal is now something like 20 requests per 3 hour therapy session and he is having no trouble meeting that! We also have a couple of new verbal programs where he labels things. Such great progress on that front.

Potty training still continues. He doesn't have accidents but it's not clear yet if the initiation part has clicked. Right now, it's still totally our responsibility to get him there on a schedule and keep him successful but we're working on it.

We've had family visitors, outings and lots of tolerance activities and he's doing great with everything.

We even got him off the mattress on the floor and into a real, live twin bed! He LOVES it!!

I'm sure there is much more - this is why I need to post more frequently. October will be better. I'm going to try to do more pics and videos.

In the meantime, here is a little snippet of B doing a couple of his "programs" for me. This was shot on 9/2 so almost a month ago. Already, he has progressed pretty substantially from here. Keep in mind that imitation and language (both receptive and expressive) have always been his biggest challenges. So, what he is doing here is AMAZING to this proud mama!

Language explosion

So that vocal requesting program that I mentioned? B is blowing our socks off! He is repeating EVERYTHING right now. He still has a long, long way to go of course but it's pretty exciting given where we were until very recently. Today, he had a break from 11-12 so I seized the opportunity to get him out of the house. My PCA and I took the boys for pizza at Target (not much you can do in an hour when it's HOT outside). B was excited to be there but started to cry when the pizza was in front of him. I think he thought it was going to be hot. So, he looks at me and says "take a bite" TWICE. I have a witness. After I took a bite, he dove in and polished off the whole thing. Those 3 words are crazy cool for a couple of reasons. 1) THREE words: that's a sentence in my book. 2) I didn't model it for him. I said "bite?" and he came back with a full sentence.  I'm sure he was echoing what I have said a million times to him when giving him food.

Tonight, we were watching Toy Story 3 and I kept pausing it and saying a word. EVERY single time, he pointed and repeated it as closely as he could. Even new words for him. This seems like such a simple thing but it is not something he could do. Not even close. In the past, he would've either totally ignored me or cried.

This next week is going to focus even harder on his language because, as our team leader put it, his language is "exploding" right now. Woo hoo!!

It's particularly cool that this is coming off of such an intensive period of potty training. Typically you don't see a big acceleration in another area when something is focused on so heavily.

On the (unfortunate) flip side, we have one other big area to focus on as a result of the intense potty-training time-out from therapy. B's stereotypy & stim behaviors are OUT OF CONTROL! Left to his own devices, he would happily run directionless for hours on end while flailing his body and singing or laughing. It has become increasingly difficult to get him engaged which hurts his progress.

So this week we focus on those two things and see what happens. He does have a 3 day weekend without therapy so that may factor in too.

But did I mention that he is having a LANGUAGE EXPLOSION???? GOOOOO B!