Saturday, January 30, 2010

When Isn't Therapy?

My boy has been taking some lovely steps forward.
It seems his class must be taking leaps, though, and they started off far ahead to begin with.
Most days I am able to happily revel in his lovely steps -- his increased communication, his greater inquisitiveness, his sounding out of some short words, his shoe tying, his ability to (mostly) dress himself, his willingness to spend extra time with me trying to explore basic math concepts like "more and less."
Friday, though, the note came home from kindergarten officially warning us he is not making adequate progress in math or sight word recognition. This is not our first such note -- in November it only listed math. At the time, my response went something like, "If his biggest problem in school is math, I consider it good news." Guess who overhead me? The deities. And they were not amused.
The Roo has long days because he has two working parents. In school, he has had much to overcome, so he has a dedicated teacher, a hardworking aide, a (weird) speech teacher, a patient OT, and a super inclusion specialist all trying to help him overcome his challenges. After dismissal, he goes to aftercare with an aide who makes sure he does his homework and that he participates at least a little in the group games and physical activities. At 4:30, I pick him up and we head home. When we get there at 5:15, our behaviorist is waiting for us to start two hours of ABA. During ABA every weeknight, we have dinner, unpack and repack backpacks, and focus on behavioral goals like turn taking, maintaining a conversation, and self care skills. At 7:30 we have time for a few stories, toothbrushing, and bed.
That leaves weekends for "extra practice." We sneak in math and reading into every day activities as much as possible, counting everything we can, sounding out signs, all that stuff. But on weekends we also need to work on his low muscle tone (today he started Kung Fu) and his cooperative play (today we went to the park). When the kids want to see "videos" on my computer, I act like it's a huge gift I give them when I play Schoolhouse Rock math videos from Youtube. When I read them stories, I let them select from my pile of library books pertaining to the kindergarten curriculum.
Hey, I'm a teacher. I know some of the advice I ought to give myself. I know that kids develop at their own pace, that autism is a developmental disorder, that it won't help to make Roo resent learning by "teaching" him at home all the time, that you can't compare kids, that he has an IEP in place so the report card should freak me out less, that right now his socialization and behavior goals matter even more than the academics, that his vision problems have had a long term impact on his visual spatial reasoning and will likely be improved through his new glasses, that progress takes time, that he's just five years old and this is a marathon not a sprint. I know that we have a great team, and a wonderful boy. I know things could be worse, and that the report card doesn't convey a very full picture of our boy's intelligence. I know that he has ADHD on top of autism, and clearly he has slow processing issues, making him hard to assess. And I know I should take a deep breath.
What I don't know, and what I want to know, is:
When ISN'T therapy?
And if we're working this hard and so far behind, how do we hold on to hope of ever catching up on anything?
Whatever happened to "hanging out?"
Is it better to repeat kindergarten or first grade?
Will things ever get easier? If so, when?
Is he in the right school?
Is there a right school?
How can we even tell which things work, and which things don't? I mean, how do we know, when things go well, if we did something right, or he would have just made that development in time on his own?
All of this... all of it... makes me weary and a little resentful. Not of Roo -- I'm so proud of him. Sometimes I resent how hard society makes it to deal with autism, how little inclusivity I can feel in some ways.
You know what? Forget all that! I don't want to think about anything in this post except for my first sentence. Remember where I began? You don't have to scroll back there, because I am going to repeat myself for emphasis:
My boy has been taking some lovely steps forward.
However you add it up or spell it, that is what counts.
My boy has been taking some lovely steps forward.

7 comments:

kristenspina said...

I will tell you that my one and only regret is that I didn't hold my son back in pre-k or kindergarten. Everything you say is true. The pressure is intense, there aren't enough hours in the day. Kids like ours need more time to learn, to get that academic foundation in place. It's not that they can't do the work, it's that they need more time to process the information. And today's school curriculum has no time to give them. It's all about hurry up and move on.

Now that my son is in 3rd grade and still a solid year behind his peers, both academically and developmentally, the stakes seem so much higher. We are ALWAYS playing catch up and we are always worried about whether he can advance to the next grade. It feels like just getting by, over and over again.

I don't know what's right for your son, but I do know that by 1st grade my son had a huge awareness of moving on to 2nd grade. He had a circle of friends, and he would have been devastated to be left behind. But in pre-k and kindergarten? He had no clue. He would never have known the difference.

And while it may be a very real possibility that he needs to repeat a grade at some point, the knowledge of that now would kill him.

Kind of complicated and sad when you think that all the kid needed was a little more time to develop. Time without pressure. (sorry for such a long comment, this is really something that I can get worked up about!) As I said, my one and only regret.

pixiemama said...

Let him repeat kindergarten. There's far more social time in k, and in 1st grade the academics ramp up significantly. We have NEVER regretted allowing Reilly repeat k. Seriously. And I know what you mean about when isn't therapy, and the School House Rock videos. It's overload. Sometimes we just have to let them BE.

xo

redheadmomma said...

I don't have an opinion on whether to keep him back or not, but I will echo what pixiemama said: I saw a big difference between K & 1st in terms of academics & social.

PBear said...

You're right, he's making huge steps forward. And that is something to celebrate :-)

And I could tell you lots of things you already know about how he does need time to just 'be' (and how you ALL need that time) - but, you already know that. So rather than stress about getting him to cram two more things into his already overloaded day/week - go ahead and repeat kindergarten. Our kids need more time to master a lot of things, and many of those are what kindergarten is *supposed* to be about - social skills, listening skills, group participation, etc - not math and reading.

And like the others have said, he won't notice or care now, or at least not nearly as much as he would once he's even more stressed out in first or second grade.

Stefan said...

You may be interested to check out the Free Sound Therapy Home Programme available from Sensory Activation Solutions. Their Auditory Activation Method builds on the pioneering work of Dr. Alfred Tomatis (Tomatis method) and Dr. Guy Bérard (Auditory Integration Training) and has been specifically developed with the aim to improve sensory processing, interhemispheric integration and cognitive functioning. It has helped many children and adults with a wide range of learning and developmental difficulties, ranging from dyslexia, dyspraxia and attention deficit/hyperactivity disorder to sensory processing disorders and autism. It is not a cure or medical intervention, but a structured training programme that can help alleviate some of the debilitating effects that these conditions can have on speech and physical ability, daily behaviour, emotional well-being and educational or work performance.

There is no catch, it's absolutely free and most importantly often effective. Check it out at: http://www.uk.sascentre.com/uk_free.html.

Stefan said...

You may be interested to check out the Free Sound Therapy Home Programme available from Sensory Activation Solutions. Their Auditory Activation Method builds on the pioneering work of Dr. Alfred Tomatis (Tomatis method) and Dr. Guy Bérard (Auditory Integration Training) and has been specifically developed with the aim to improve sensory processing, interhemispheric integration and cognitive functioning. It has helped many children and adults with a wide range of learning and developmental difficulties, ranging from dyslexia, dyspraxia and attention deficit/hyperactivity disorder to sensory processing disorders and autism. It is not a cure or medical intervention, but a structured training programme that can help alleviate some of the debilitating effects that these conditions can have on speech and physical ability, daily behaviour, emotional well-being and educational or work performance.

There is no catch, it's absolutely free and most importantly often effective. Check it out at: http://www.uk.sascentre.com/uk_free.html.

jess wilson said...

yes. to all of it. every bit.

the highs the lows, the frustrations, the questions.

yes.