About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Wednesday, April 8, 2009

Recalibrated Expectations

It's human nature to have hopes and dreams for your child. I love Brad unconditionally, but I can't turn off that part of my brain that hits the fast forward button and imagines the future.

And like so many parents, Brad's diagnosis initally shattered those dreams. Then I learned about autism, recalibrated my expectations and came up a with a new vision for Brad's future. He would be different, in a good way.

The rosy outlook culminated when Brad was evaluated by his school. His teacher made an observation in his written report: "superior attention and eye contact during the 50 minute evaluation." When we met in person, he went on to tell us that Brad isn't what he expects for the PDD diagnosis.

Superior, I thought. Not "good", not "sufficient", but "superior". There it was, in black and white. He's going to be okay in school. He might not even need special education for long. My expectations crept up.

Flashforward to Wednesday of this week. I met with the school district to check in and see how Brad's doing now. The verdict: not well. There's a massive delta between his one on one performance (i.e., when he was evaluated) and his performance in a group setting.

Bam! Serves me right for having high expectations and getting ahead of myself.

He's withdrawn. Socially, he's an island, off on his own. Cognitively, he's having difficulty following instructions. He goes for the playdoh by himself when the other kids are monkeying around with each other. He doesn't attend, which is his shining strength in a one on one setting. Bottom line: he's barely keeping up. And keep in mind, this is a special ed class. His peers are, for the most part, not socially advanced.

I've blogged before that Brad doesn't melt down. And from this I've concluded that he doesn't overstimulate. I think I'm wrong on that point. I suspect that he does overstimulate, only instead of melting down or expressing upset, he withdraws and blocks the world out.

I pressed for one on one "pull outs" for OT to fill the soon-to-be void, assuming we have to stop private OT. As I predicted, the school shut me down. Something about the law requiring services "in the least restrictive environment." They're going to add Brad to the OT's informal rounds. This means she'll visit him in the classroom and facilitate in a group setting. Not what I wished for but it is something.

The physical therapist will do something similar, visiting Brad when he's on the playground with the group to facilitate his physical play. He'll also get ad hoc one on one as needed during regular class to help him keep up. His IEP is being revised to reflect these new accomodations.

So, once again, I am recalibrating expectations, hopefully to something realistic this time. As for Brad, I'm grateful that he has a great educational team that really understands and appreciates him. Onward, with realistic expectations and a realistic IEP.


Anonymous said...

I'm not sure exactly what recalibrated expectations you are setting, but I want to encourage you not to jump the gun. He's only 3 1/2-ish, he's only been in school for a short time, correct?

Also, Charlotte does not meltdown either. (She has temper tantrums, sure, but not frequent, and not long-lasting meltdowns.) She goes more into shutdown mode when she's overstimulated. That, IMO, is why she does not have behavior issues. She just retreats.

Are you treating Brad with SPD-based OT? Can you talk to the OT about sensory-based activities for him? Maybe those are built into the curriculum already as is wont with many special ed preschools.

I'm not trying to pump you up and give you false encouragement, I'm just saying, that Brad is young and has much opportunity for development to come. The gift of time.

rainbowmummy said...

I agree with goodfountin, Egg is COMPLETELY different at 5 to what he was at 3. All I can say is bring on 9, lmao.

anything, sweetie said...

i know exactly how upsetting the isolation thing can be to witness- i have been there, got several t-shirts, customised some of them. and i choose my words carefully there, because it was me that was upset- not rudy... he was coping.

and that's quite a skill to have when you're as little as our sons, so imagine what brad will be capable of when he is older.

meltdown is a different ballgame, as my daughter is currently teaching me.

Patience said...

You do have a long way to go but you're starting at a higher point than we did.(and earlier)
I would say it's better to look back than forward (ie see how far you've come) and do an every six months look back to feel good.
At age nearly 14; dd is still not socially perfect (a little rocky making friends but can) but compared to 3 1/2? Night and day.
The hardest part for me was how the diagnosis sort of took away some of the pleasure I should have had at that age and replaced it the the panicked feeling that we should be pushing her more. I don't give into that feeling anymore.

Jann said...

Having a child with a disability is a roller coaster. There are incredible highs and lows, often on the same day.

My son was in two different preschools, one a special ed language school where the teacher couldn't shut up about autism, and a regular preschool where they understand he has a language disorder.

So in the first conference at the special ed preschool, the teacher had hardly anything good to say...he doesn't follow directions, not playing with other kids, can't transition can't do this, can't do that. It was devastating.

So, of course I braced myself the next day for the conference with the regular preschool...and the verdict was....He was doing GREAT! Smartest kid in the class, played with everyone, tried new things, etc. etc.

In our case, this taught me so much about the negative power of the "ASD" label, and the baggage even professionals often bring with them if they are certain your child "is" a certain way...the child fulfills their expectations.

We had a similar issue playing out in speech therapy this year. His private ST, who doesn't think autism is an issue, is having GREAT sessions with him on Monday nights. On Tuesday mornings, like 12 hours later, the school therapist, who wants to slap him with the ASD label, has to try to coax himout from under the table for his session.

Same kid...different adults. Who's the problem here?

My son is really different at 7 than at 3.5. You'll see so much growth in the next few years.

One other note as an aside: For LTers, 3 is often the worst year. They really become aware about how different they are from other kids without language difficulties, because that's when everyone else's language is really taking off.

Nyx said...

Like Jann, I also wonder whether it's really Brad that's the "problem," or could it be the environment, the other kids, or even the teacher? You know I remember so well how mean kids were when I was little. But sometimes teachers are the problem too. My cousin's daughter, NT but gifted, just turned 4 and her preschool has been complaining that's she's too aggressive. They called in a behavioral therapist to figure out what's "wrong" with my cousin's daughter. Guess what the therapist said? The teachers were what were wrong! Basically, in a nutshell, they were not nice to her. Frankly, they didn't like her and they let her know that. Also, you know there are lots of anecdotes in the Mislabeled Child about how an environment that is a poor fit for a particular can really shut a child down. Example: noisy environment, child with auditory problems. So ... I say we all know that Brad is smart (really smart!), charming, warm, loving ... he's beautiful! (OK, it's true that your son reminds me a WHOLE LOT of my son, so I may be a LITTLE biased. But I really believe it.) I say maybe it's the school or the teachers or the other kids that have the problem. Or maybe it's just not a good fit.

Anonymous said...

It truly is a roller coaster ride of constantly adjusting expectations. And sometimes it's throwing them out the window (the expectations, that is), taking nothing for granted, and letting our children WOW us in their own way.

I also agree with goodfountain. Brad's only been at this school thing for a short time. He'll get it, I'm sure.

Shari said...

If Brad is withdrawing due to overstimulation, then that shows very good self regulation. That's a good thing. And, according to Greenspan, if he is able to function well in a one on one situation, then he has those skills.

I agree with the other commenters, I think he'll get better with age. I keep telling myself the same thing with my little guy, and most days I believe it.

Laura said...

Thanks to everyone for talking me off the ledge. Each of you is right, of course. Your support means so much to me.

As for Brad, I'm much less concerned about social than I am about cognitive. And while I don't take for granted that he attends one on one, I do still hope that he will progress to the point where he attends in a group setting.

As for SPD or auditory processing disorder, my school doesn't recognize it in the formal sense, but they do employ appropriate stategies, I think.

As for the school and his teachers, I believe in them. It's me who's deflated, and that's only because I pumped myself up so much. Their concerns are valid and were not overstated, in my opinion.

Brenda said...

Hang in there, Laura. Expectations are one of the most difficult challenges I've had on this journey. I want to dream for my child, too, and then run into the brick wall of reality. My child is 4 years old and we've had lots of uh-oh moments. And I'm sure lots more to come. Big hugs to you.

Stimey said...

My guy sounds a lot like your guy. He doesn't meltdown, but when he gets overwhelmed he totally retreats.

Also, the least restrictive environment should mean the least restrictive environment in which your son can learn. And remember that his IEP is "individualized." His least restrictive environment may be different than another kid's least restrictive environment.

Hang in there. :)

Judith U. said...

Also, the least restrictive environment should mean the least restrictive environment in which your son can learn. And remember that his IEP is "individualized." His least restrictive environment may be different than another kid's least restrictive environment.


I completely want to second what Stimey said. I talked myself into the prescribed LRE situation for almost two years with Jack. In the long run, as much as I hated to admit it, I realized it was not right for him as an individual. He needed one-on-one support in a different kind of setting.

Once I let myself go there, I've really seen him blossom. He's communicating and even better, generalizing what he learns at school. It's crazy!

I don't say that to say that that's what Brad needs at all. He and Jack are very different kids. I just want to whisper in your ear that LRE is subjective ... Brad is an individual in the eys of IDEA. Keep that in mind as you move forward.

Laura said...

yeah, I hadn't come up against LRE or considered what it means for Brad. But now I understand why it can get acrimonious. My town's gatekeeper/OT person - she's like the Terminator.

Emma said...

Least restrictive environment was supposed to help special ed students but it is being used against some people clearly. You can waive your right to least restrictive if they use that to deny services. LRE is NOT supposed to be used against you - it is supposed to mean that YOU can demand the greatest amount of mainstreaming for your son. When my son's school district brings it up as a possible reason why something might not be possible I always tell them I would be happy to waive my right to LRE in order to get that service.

OT should be a given for kids on the spectrum in my opinion (unless the classroom uses a senory process approach)

Good luck


Anonymous said...

Hi Laura. I saw a comment you made at Kittywampus and was intrigued by her mention of your blog so I came on over. I'm not aware of knowing anyone with autism but I am interested, partly because my son and daughter-in-law recently expressed concern about their two-month-old's impending vaccination since they had heard about a relationship between vaccination and autism. I was able to find them some good information (in my opinion "good") that allayed their fears and Brady was vaccinated. Now I have another place to send them for this kind of information. My daugher-in-law is a teacher and has had questions about autism in terms of some of her students as well. As I'm sure you know, teachers are "trained" to look for signs, but often, the information is not particularly good. She'll be happy to have a place to satisfy her desire to know as much as she can that could be helpful to children. This is a great blog and I think both your children are absolutely gorgeous. Thanks so much.

Laura said...

Alterwords, thank you so much. Yeah, parenting is crazy in this day in age. Media terrorizes parents, sensationalizing anything that presents risk. But of course, some of the risks are real, like lead in toys. And some is smoke and mirrors, like vaccines. To discriminate between the two takes presence of mind and critical thinking. So good for you for having both!