Tag: CSE

LETTING OUR CHILDREN BE OUR TOUR GUIDES

post 10

(Above is an image of five people at a table, all reaching one hand in for a “high five”)

Okay, so literally no IEP meeting ever in the history of IEP meetings looked like this image. But I digress…
​ (By the way: IEP= Individualized Education Plan)
Oh my, IEP day.  It’s almost as daunting as D-Day (diagnosis day), only we get to relive it every single year, with mid-year reviews just for fun.  Because who doesn’t love big scary meetings on a biannual basis? <this is sarcasm>

On this particular day, we were meeting with the chairperson for the Committee for Special Education (CSE), the autism specialist, the school’s principal, speech therapist, school psychologist, occupational therapist, OT assistant, special education teacher, physical therapist, and Wonder Boy’s teacher. Add myself and my husband to that mix and you’ve got one really full table.  That’s right- there were twelve of us at this meeting.

It’s really no wonder at all that parents and caregivers are completely overwhelmed by special education.

Let me start by saying that at every single one of these meetings (and we attend them for Speedy as well), I thank the team for being a part of Team Wonder Boy (and Team Speedy). This really sets the tone, and it means that his parents are the first to speak.  This is a power move, make no mistake about it.  I do this very deliberately, because I want the very first words to be positive.

Once all of the introductions have been made, which alone takes about 15 minutes because there are so many of us there, we hear first from the primary teacher.  We are then asked whether the things she is seeing in the classroom are a good reflection of the boy we know and love at home.  His teachers are incredible, and yes, the boy they see is the boy we know at home.

Next, each of the therapists and various other Highly Qualified Professionals reads from their notes about his progress and regressions, and we spend time discussing what his services should look like for the remainder of the school year.

Then the big news came: while his progress has been notable, he shows enough regression data (where they track how much he regresses during each school break) to qualify for a 12-month IEP.  Wait, what?
My jaw hit the floor.  I was truly not expecting to hear those words at all.
We were asked about the plans for the summer, and we explained that we’d found a great program for the boys for the summer.  A camp with a 3-1 ratio of kids to counselors, one which works on skill building and allowing kids with disabilities to be kids first and foremost.

This was an epiphany moment for me- I realized that there’s something all special needs parents have in common.  You learn, quite quickly, to protect your child’s services fiercely.  They’re not always easy to come by, and in some cases are hard won.  So when the CSE chair asks you whether you’re declining a service, you may be hard pressed to confirm.  It took me a good five minutes, and a LOT of prodding on behalf of the CSE chair, to actually say out loud that we would decline summer services through the school district.

Another discovery came of that meeting.  During the course of the meeting, the speech therapist talked about working with Wonder Boy on his social skills.  I came right out and said that unless they could produce a child with a strong interest in all things narrated by David Attenborough, he really wouldn’t be interested in a social life.

I couldn’t have been more wrong.

It’s not easy for me to admit when I’m wrong, and I think that’s a fairly typical human trait.  We enjoy being right, especially about our own offspring.  I made an assumption that a lot of people do about autistic children- that they’re not interested in friendships.  And this one really shocked me, because it’s not like me to go so astray on something like connecting with other people.  But I did.  And thank goodness for a therapist with a poker face, she didn’t call me out on my assumption.
My correction came a week or two later, when we had all gone to the park.  Our two youngest boys were playing on the playground, and saw two children who were more or less the same ages.  And something really beautiful happened- Within seconds, Wonder Boy walked up to the kids and in a way that only our special kids can, shouted his name in the face of one of the kids.  He asked the name of the younger child, and then the boy’s older sister spent time teaching WB how to say her brother’s name.  After some time playing together on the playground, Wonder Boy sat down at the picnic table with the girl and asked her questions about herself.  He found out that she was a seven year old girl who had just moved into our neighborhood with her family.  He started the conversation with her, and the two of them chatted as though they were a couple of middle-aged coworkers who happened to run into each other in the supermarket.

Let me take a moment here.  HE started the conversation….
Wow.  It wasn’t at all that he wasn’t interested in socializing, rather that he needed to be given the freedom to do it in his own time.
I was speechless, and was reminded immediately of something that I talk with families about when they seek help at work.  These kids of ours are incredible tour guides.  We work hard to prepare them for the next stages, and we provide them with a whole rainbow of services, and at the end of the day they have the ability to completely shock us with what they DO with all that information.

The thing that I’m taking away from all of this, and I hope you will too, is that we must see the potential.  We must presume competence.  And lastly, we must believe in ourselves and our children.  They have beautiful things to teach us, if we just stop talking and let them.