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He's withdrawn.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.

The Brad Papers: Part 2

Here I will share an excerpt from a weekly newsletter from Brad's preschool:

Motor Groups for January
This month during Motor Group we have resumed our weekly warm-up stretches including standing on tiptoes with arms overhead while keeping our balance and jumping in place and jumping forward with a two footed takeoff and landing. We also resumed our walking “warm up”, running, and walking “cool down” laps in the gym. The children are always encouraged to pump their arms and run “just right” while traveling all around the gym. We see that the children have improved in their overall physical endurance for these laps since the start of the school year.

The children then played some new games. They listened very carefully and followed specific directions to run from one spot (a certain colored star) to another spot (a circle or cone of the same color). Children were assigned to different color teams for their stars/circles/cones. They listened very carefully for their “color” team before taking their turns. After running to their new spot, the children followed a multistep sequence for a motor activity, “RUN, STOP, DROP, and ROLL”. This was tricky and the children listened carefully, watched a model and then completed the motor plan for the activity. Another game we played included having the children start at their colored star, run to their colored circle/cone, pick up a bean bag, and run back to their star. We added several directions to the game including placing the bean bag “under” the cone or standing “next” to the cone. The children worked very hard listening closely to the multistep directions to complete each task.

We hope you are taking advantage of the many opportunities for outdoor snowman-building and playing in the snow during this month’s snowstorms. Snow shoveling with a child-size snow shovel is a wonderful functional, resistive, “heavy work” activity. Be careful on the ice but please keep your children active!

This is just the motor group. I reprinted it here because these are great strategies for PDD, dyspraxia and SPD (sensory processing disorder). So great that it's hard for me to imagine a richer, better suited educational environment for Brad, with his "ho hum" profile. (As an aside, it's a shame that some people feel the need to scare parents into homeschooling, lest some one use the word "autism" and their child's name in the same sentence.)

The preschool also engages the class in a range of cognitive activities. Not to mention the freeplay and the fun. (Also important!) His peers (hopefully, soon-to-be-friends) are a mix of special education kids and typicals. The special education kids seem like PDD kids (one older than Brad and nonverbal) and aspies. The only thing I'm certain of is that there are no Downs kids or physically disabled children in his class.

Yes, people. I have stumbled across some sort of Early Childhood Development nirvana.

The Brad Papers: Part 1

Here I will share the "accomodations" listed on Brad's IEP:

• Model and expand language and sound development
• Break down activities into incremental steps
• Wait time for processing
• Frequent breaks for movement as needed
• Inflatable seat cushion as needed
• Position pre-writing, drawing activities on a vertical surface
• Adult assistance and cues as needed to encourage independent self help skills as it relates to outerwear, backback, snack, toileting etc.
• Adult monitoring and cueing as needed for use of both hands together in functional activities thoughout the school day
• Monitor use of utensils and classroom tools for hyper-extension

I think Brad's IEP hits the metaphorical bullseye.

A few notes of explanation:

1. Monitoring the use of both hands is to promote bilateral coordination.
   
2. The hyper-extension, also referred to as hyper-flexion, is related to the hypotonia or low musle tone. If a child has low tone in his fingers, the fingers bend way back and present special challenges with respect to handwriting.

First IEP!

Brad's big month continues. First potty training, and now...school! On the horizon.

We met with the school district on Wednesday and received our very first IEP. We also received his evaluations. Lots of interesting observations, but the bottom line is that he's at the low end of the normal range for speech and gross motor, and below the normal range for fine motor.

The IEP result - all good news:

• He will attend an integrated preschool four 1/2 days per week. The integrated class is currently 11 children, at least half of whom are typical peers
• For specialty services, he will receive two half hour sessions of speech per week
• With his class, he gets access to an array of group activities geared to motor, physical and social development

His classroom teacher is a real standout. First off, he's a dude. He's very nice, and very knowledgeable about childhood education. Second, he plays the piano, for the kids. Brad loves the piano. We bought him synthesizer, and it's his favorite toy. Third, he seems to appreciate Brad as an individual, which is his job (hence, the "I" in IEP). But after having heard enough stories about underestimated and misunderstood children, I appreciate that he seemed to understand Brad.

To anyone afraid the "autism" label is a one way ticket to some sort of educational ghetto, I can only say: that's not my experience so far. Quite the opposite.

I should also add that while his diagnosis guaranteed placement at the special education preschool, given his social and communication function, in all likelihood, he would have nevertheless qualified. The children that I know of who have gone to the same school didn't have a diagnosis, including a neighbor of mine.

One final note. I considered sending Brad to Montessori or a regular preschool. While I appreciate that Montessori is regarded as cultivating free thinking in children who break the typical mold, at this age, Brad needs structure and routine, not broad freedom. As for regular preschool, I was reminded of this essay in which Kerry Cohen writes:

When I picked him up from our first stab at a regular preschool, one where special needs kids were supposed to be welcome, I always had to brace myself for their day's account. He didn't listen. He cried and cried and they didn't know why. He wouldn't sit with the other children during story time.

I wonder if this isn't an inevitable result for SPD and PDD kids, the result of trying to fit a square peg into a round hole. Why subject Brad to that?

Brad Update

Brad's changing every day, most recently becoming more of a sensory-seeker. All of a sudden, he has an insatiable need to hug, which I think may be a tactile thing. It's not really a hug, more of a head plant. But it's very sweet, and I'm lapping it up. He's also spinning around a lot, and jumping and rough-housing a lot.

We're in a holding pattern on two other fronts:

• Potty - he's got bladder control, peeing in the potty about twice a day. Everything is going very smoothly in that department. Self-help is a different issue. Won't go there - TMI. Let's just say, we change his clothes even when we make it to potty on time. Next step is getting rid of the diapers completely. I plan on doing that in the next few weeks. btw, I'm the proud owner of two Piddle Pads (hat tip to Rainbowmummy and Patience). I haven't broken them in yet cause we're still using diapees in the car.
  


• School - we meet with the district on December 17, at which time they present the IEP. I think it's a foregone conclusion he'll qualify for something - what that will be, I don't know. I'm hoping for a seat in my town's integrated program, so that he'll have some typical peers.