Landon's Story

Saturday, May 7, 2016

My Son Was Put on IEP to Enable Him not to Disable Him

After 2 years of strong advocating, countless hours spent worrying and frustrated, and even more hours spent educating ourselves regarding his education while simultaneously educating him so he could even maybe access that education, 3 days ago, at what seemed like our most simple meeting yet, the school agreed L is now ready for an IEP.

By "strong advocating" I mean being "that" mom, I'm nothing if not stubborn. "Hours" was really "months". "Worried and Frustrated" as in completely burned out and exhausted. And "simple" meeting meant about 10 minor internal panic attacks, countless reminders to breathe, and a headache that started 3 hours before I even arrived. I also lost my voice the next day, though I don't remember talking much during the meeting.

We've been through a lot to get here. A lot of doctors appointments trying to explain the daily struggles, Neuropsych testing which involved sitting in VERY uncomfortable waiting room chairs for 4 hours after a 2 hour drive one way, and then another 2 hour drive  back. To be followed by a 3 hour drive (one way) to go get results, and then waiting 30 days for the report to arrive in the mail because it seems our mailman could also benefit from some additional education. We did finally receive that Valentine card on Easter, close enough...

If you've ever been to an IEP meeting you know they spend the first 90% of it telling you things you probably already know about your child. He doesn't transition well, he takes the longest possible route to anywhere he doesn't really want to go, listening is optional, and if you make a rule he will hold you to it. If you say we read every other page with another student, you better also state that a page with 3 words qualifies that other student to an additional page, or well, let's just say it gets loud. Someone else is stubborn too. ;)

There were some small laughs to be had while they were telling me these school observations, as I envisioned him taking the longest route possible to his bedroom at bedtime in our 2 bedroom apartment, no easy task. And when I re-lived the time I accidentally put the water on his toothbrush when that was NOT a step on his daily picture chart. Teeth went unbrushed that day...ooops. The dentist says they look good though, and that he's cutting molars which is why the sudden re-surge in his oral sensory seeking. Did you know children could chew through $120 computer power cords, while plugged in, without getting shocked? I do now! How dare I take a shower and leave my 6 year old alone for 10 minutes.

So in the last 10 minutes of this meeting, finally the bottom line. I had already prepared for the worst. "He's borderline, he doesn't qualify, maybe a 504 plan, or we can always put plans in place without the IEP, etc etc." I'd heard it all before. The problem with all of those options being that the school wasn't consistently following through with any of the plans we had made. I was so reluctant. To the point they had already gone through the qualifications, stating the one's he had met. I read on top he only need to meet 2. I still couldn't believe it when they'd listed more than 3 of them. HE QUALIFIES!

I actually don't remember much of the rest of the meeting. We still have to write the whole thing. There are still compromises and disagreements to be had, but he qualifies. No more hours of "catch up" at home. No more trapping his teacher into a corner to get a decent daily report. Most of all, no more beyond frustrated child with completely burnt out parents. He qualifies, and finally the school will be held more accountable. He will receive the help he needs, and we are free to take a little time to actually be a family and have fun with our child.

I got home and the first thing I wanted to do of course was tell someone. You don't end a 2 year battle with a win, and not feel like screaming VICTORY! Dad is asleep...ugg night jobs! Grandma....didn't answer her phone. Uggg. Social media? Perfect! Instant posts in our 2 IEP/Special Needs groups and our Epilepsy Group. Done. I have to admit the congrats and nice comments are good to read. The best part though, several other parents of kids like L asking how did we do it? How did we FINALLY get the school to see? They are in the middle of their own battles too. Many many kids just like L, falling through the cracks with burnt out parents doing everything they can to keep their child caught up on their own because the school refuses to do so. Being able to help someone in these groups is empowering, and really shows me how far we've come from that 1st day in the hospital with our very sick boy and no idea what to do besides hold him.

Then comes my personal page. I can't do it. I think about the people that read my page regularly, they'd all be happy to hear. Then there's the other ones. The ones who don't completely get "it". The ones who like the school, can't see any other definition of "Special Needs" than the most severe of cases. The ones who surely would be talking to one another, "Did you see what they did now?" "What kind of parenting do they think they are doing?" "That child just needs 'real' parenting?"

Yep, we know it gets said. We've heard it be said. We can feel it when we enter rooms with these people. We can read into the questions they ask and how they ask them, and we can see the disapproval. Sometimes it doesn't matter. We don't really have the time to care about it. It doesn't hurt us. We just move on knowing its not worth the battle. We know what we're doing it right for our child, and that's all that matters. Other times, it stings. It burns deep. Some of these people are supposed to care about our child a lot. Some are family. Some are lifelong friends. That disapproval hurts, and its not because they aren't being accepting of us. It's because they aren't accepting our son. A very bright little boy, who'd help you with anything, as long as there was a reward of video games in the end ;), and who is quite honestly the goofiest person I know.

So I didn't post. Was it worth the "fake" questions we'd get the next time we're around those people. Is it worth that sting? At the time it wasn't worth it. The people who were following us, and who we knew were accepting, had been told and were already congratulating and supporting us. The others, well, sadly for them, they didn't get to participate in the good news.

It's been 72 hours, and now I'm ready because how ridiculous is it to go through a 2 year battle and not to be happy about coming out with a victory? If others can't understand that, then I'm glad my son has taught me to be more accepting than them. MY SON IS GOING TO BE ON AN IEP!

There I did it.

For those who are going to say it, you're right, he is not "disabled enough" to be on an IEP. That's because he's not "disabled" at all. He is unique. His IQ can test in the top 1% when his brain will let him do it. He can run, skip, jump, play sports, and lay around playing video games. He is verbal, when he feels like it. He needs reminders to complete even a simple task, he needs cuing to stay on track, he needs sensory breaks, and time for extra motor output. He feels everything very strongly, so he cries a lot. He also embraces happiness to the greatest extent possible. When he hurts he cries, and because he hurts easily, that means a 30 minute meltdown over a slightly scraped knee. He can't "just get over it". That also means extra cuddle time with mommy. :) We've had countless meltdowns in Walmart because he's over stimulated, and yes he still rides in the cart 90% of the time even though I know people think he's "too" big. He can be impulsive, and sometimes do things we really don't understand. Forget about asking him to find and bring you something if there are any other items within a 5ft radius. He's been able to run our phones, the TV, every video game that exists, and anything that runs off of electricity since before he could walk or talk. He took his time with both walking and talking, but picked it up overnight when he decided it was time. Most things are done on "L Time". He can recite just about every word of every movie/show he's ever watched, and if you ever need to know the jingle for a commercial, all you need to do is ask him.

We have therapy balls, balance discs, special chairs, weighted vests and blankets, bouncy bands...and I'm still convinced that somewhere in this two bedroom apartment we can fit both an indoor trampoline and a swing. We do homework in rocking chairs sometimes. We eat pizza every Friday because we once labelled it pizza and movie night, and it is not allowed to change now. He asks us to play video games at least 50 times a day, and many times he melts down when we tell him no. We pick our battles. We pick our battles A LOT!

We do none of these things because he is "disabled" though. They are all to enable him to be the best he can be. My son is on an IEP to enable him to use his top 1% IQ ALL of the time, not just on Tuesdays when it's 53 degrees, he's wearing the perfect shirt, and he's in his "perfect" zone. He's on an IEP so that he can go to school without having to worry about what sensory things are going to surprise him. He's on an IEP so our whole family can be the best that it can be, so that we can have fun on weekends and evenings without being burnt out over the constant school battles. So please, talk behind our backs about why he isn't "disabled enough" to be on an IEP, Even say it to my face that he isn't, because than I can tell you I agree with you. L is not disabled, he is just waiting for all of us to catch up and enable him.






1 comment:

  1. Wow.....yeah Victory. I know the feeling of battle.

    ReplyDelete