Worry

We've been watching a series on PBS this past week about Autism. Last night, while we listened to B cry in his room, it focused on adults with autism. What becomes of all these kids that we hear so much about? When they are "no longer cute and harmless". Let's just say it was more than a little depressing. They showed a 21 year old man who is about to lose support services now that he is an adult. He has no functional language... the closest thing his family has to conversations with him is a back-and-forth exchange of movie quotes. And the disheartening thing was that they showed this same guy at about the same age that B is now. If anything, he seemed to understand more than our little guy does. Of course we don't know what type of treatment he received or anything else about his level of impairment but nevertheless, it made us worry.

So then today, we went for his evaluation. And I wish I could say that it made us feel better. Unfortunately, it was a harsh dose of reality and now we are really worried. Scared. Petrified. Basically rendered speechless on the ride home.

We won't get their report for 4-6 weeks but I can give some highlights. From their assessment, B functions at about an 18-month old level and only 3 months for language. Less than half his age overall. Gulp. I hate to admit it, but 18 months does feel about right when I think about his real age relative to other kids.

B was in another room from us for all of the testing (which I didn't expect). We could hear him giggling and crying a couple of times for brief periods. While the psychologist worked with him, hubby and I were interviewed and filling out some standardized assessments. As we answered "no" more often than not, we were reminded of all the things he does not do like other kids. So many things.

He did remarkably well being in an unfamiliar place for an extended period of time. It did wear him out - he passed out cold in his stroller during the last half hour. Who can blame him? He is becoming somewhat of a pro at all this testing though.

And now to the "results". We really liked the psychologist overall.  She made a lot of good points like the fact that  it's difficult to truly test kids with autism because of their deficit in cognitive skills. And it's hard to know what they can do vs. what they will do. And she said that we have a great kid with a great demeanor and an infectious laugh. So she's also perceptive (ha ha).

But boy do we have our work cut out for us! His language just isn't clicking. Whereas we thought he had made huge strides in receptive language, she thought he was only able to understand via physical clues and intonation - not by listening to the words themselves. He did not respond to his name for her or to commands like "no" or "stop". He did surprise her by some of the things he could do like sorting, putting pennies in a jar, doing puzzles. Unfortunately, all of these are programs that he has been working on in ABA. So while it's great that he is retaining what he's learning, it's not great that he is having to be explicitly taught each of these things.

We were praised for getting him such intense help so early on and she definitely emphasized that he is still so young to know how he's going to develop. With regards to IQ or any additional diagnosis of mental retardation (renamed to a more politically correct intellectually deficient), it's impossible to assess until he's older. I think she said at least age 5. She also said that he is learning steadily rather than falling further behind.

Tough stuff to hear. Next week, we'll see how he measures up through the assessments and analysis of our ABA provider. But, as hubby pointed out, today's was the most objective opinion.

So we hold on. We keep going, knowing that we are doing all that we can. And that he is still our sweet boy who impresses everyone he meets with his happiness and demeanor. And we hope against hope that he turns that corner... that it just starts to click as it does roughly half the time with such intense therapy. And we worry...and worry. And then worry some more.

Happy Easter

We had a nice day off today. It was our first Sunday without a full day of therapy in quite some time. Good friends of ours graciously invited us for an Easter lunch. Since B spends SO much time in therapy, these outings are very rare and I am always nervous about how he'll do. He was SO excited to get to go and generally pretty over-the-top excited the whole time we were there. Both boys sat through the meal - I call that success. It is tough to see B around other "typical" kids though. He wants to be with them but really doesn't know how. So, he spends a lot of time around them and a lot of time doing his own thing entirely. It's not an easy thing for a parent to watch.

We also had a pretty tough ending to the day. Recently, B has started coming out of his room when we put him to bed (ahhh - the freedom of a big boy bed). Yesterday, we bought one of those door covers that makes it so he can't open the door. At first, he thought it was hilarious and then it quickly turned to a gut-wrenching cry. I didn't think we'd have to cry it out quite so late in the game but here we are again. Fortunately, it only lasted about 15-20 minutes and ended with him soundly sleeping in his bed (vs. passed out next to the door as I feared). Tough love. We had to do it or we'll be in this pattern of him getting up every night which isn't good for any of us. I just hate that I can't just explain to him that he has to stay in his room. I hope it only takes one night of this.

Tomorrow is a big day for us. April 20th marked the 1-year anniversary of B's diagnosis so it's time for an annual assessment. We have a diagnostic assessment/evaluation tomorrow from 1-4 with a new provider. I'm a little nervous and anxious about it. I never know what to expect. I'll try to update tomorrow with their findings.

Mommy, when?

"Mommy, when will B learn to talk? All on his own?"
Sometimes I really wish I had the answers.

You take the good, you take the bad

Good: 
Today: at 6 a.m., B pounced up our stairs and hopped in bed with us saying "show" amongst a LOT of other babble. I wish it had been later in the day, but it was super cute anyway. This too is progress. The old B would've kept himself busy on his own for at least a while before seeking us out.

I was gone for the 2nd of B's sessions this afternoon (the first one was with me so I welcomed a break). He has a receptive program where we show pictures of people (family & therapists) and when we say their name, he has to choose the right one. Apparently whenever my picture was present, he would pick it up and say Mama. It was distracting enough that they had leave me out of the options. I like that.

Bad:
I'm a little concerned that his bolting behavior may be back. He ran ahead of us when we picked big bro. up at school and did not stop when I called his name, yelled stop or any of the other things I yelled to him. He got ahead enough that he was out of my eye sight. Then in the parking lot, he freed his hand from mine and took off. Um, scary. This was a problem we had in parks before but once he started wanting to hold my hand, it went away. I hope today was a one-time event.

Ball of Sunshine

This afternoon, B had an annual check-up with the developmental pediatrician who formally diagnosed him a year ago.

I'm honestly not sure what the point of it was. We met for about a half an hour and I learned (or rather, it was reiterated) that doctors know very, very little about this disorder. He asked me questions and I asked him some and then he said he wanted to see us back this time next year before, incidentally, he retires in the Summer.

He did say a few things of interest:
1) it might be worthwhile to investigate occupational therapy. I have thought about doing this so maybe we will pursue it in the hour or so of free time that B has these days. (I'm serious despite the snippy tone.)
2) When I asked where on the spectrum B falls (mild, moderate, severe), he wouldn't say but said the following:
-if by their 3rd bday, a kiddo has some language of some sort - that is the first milestone toward "mild". He said B meets that.
-then by their 5th bday, there has to be some back and forth communication. If he meets that criteria, he suggested mild autism. If not - moderate.
This was comforting because I swear he said they had to be able to communicate by 3.5 (B's age now) last time I saw him. I was sweating that since he is 3.5 next month. And, then again, it wasn't that comforting because it seems so arbitrary and even contradictory. Guidelines are just that though- no one has the magic answer here. When B was evaluated by a psychologist last year, he rated him as mild-moderate. I'm going to go with that and hope that it begins to look milder and milder as time and treatment go on.
3) I asked him about the diet/biomedical side of intervention which I have been contemplating for some time. Again, the overarching theme was that no one knows if it works. He did venture to say that he doesn't believe and hasn't seen where the lack of biomedical treatment affects outcome. More food for thought, I guess. This one still baffles me.

As B giddily roamed around the room, he said "B, you are just a ball of sunshine, aren't you?" A very accurate description of our little guy. He truly is remarkable in that way. And we are very, very lucky.

I think our 3 hour diagnostic assessment on the 24th will likely be much more helpful and informative. And, of course, there is the biannual, monthly, weekly and daily analysis that our ABA provider gives us. We are armed with a lot of data and yet no one has any idea whatsoever how this is all going to turn out. It's mind boggling and more than a little frustrating for this type-A planner.

In other news, tomorrow we're headed to the capitol for an Autism Rally to hopefully help secure the future of our state funding. It should be interesting with the kids but fortunately, one of our therapists is going along too. And then, afterwards, we head to the pediatric dentist. Poor big brother chipped his two front teeth in a freak hand-washing incident with one of our therapists yesterday. B also has a chipped front tooth (source unknown) and I find it highly ironic that 2 of the most cautious kids on the planet have managed to sustain such an injury.

Jokester

I'm pretty sure B just told a joke. He has been putting animal magnets together on the fridge and one of the therapists has been making the animal sounds. He just went up there and said "it's a moo" and laughed hysterically - looking to us to gauge our reaction. Not a funny joke-mind you, but pretty cool nonetheless.

The big boy bed is still going great - he is sleeping consistently for about 12 hours a night - can't ask for more than that! He LOVES it and spends a lot of his "down"time rolling around in the covers.

Things are happening so fast and furious that I really should write something every day. I just don't always have the time or the energy.  So I'll try to remember some highlights: B had his highest acquisition rate ever last week because he is "probing" through so many things - meaning that he can do them without explicitly being taught. When I worked with him this week, it was really challenging because there are so many new things (a good challenge for sure).

One of our therapists got a teaching job and had to leave our team. We'll have a new one starting the week of 4/11 so it will be interesting to see how B responds to someone new since he has had a consistent group for several months.

He is repeating lots of cool stuff and singing a lot. My favorite vocal lately was when he repeated his daddy saying "lil dude".

April is a big month. The 20th marks one year since his official medical diagnosis. We have a follow-up visit with the dr. who diagnosed him and a thorough evaluation from a new provider to see how he's doing. In the beginning of May, he'll have his next 6-month review from our ABA provider so there is going to be a lot of attention on his progress and development... even more than usual.