It seems to be human nature to fear what we don’t know…I know it’s certainly true for me! I’ve said before ((and most likely several times)) that the hardest part of fragile X is the not knowing. No one can tell you what comes next, no one can tell you that you will live happily ever after and I really, really, really needed to hear that. Not that I would have believed it for a second but it would have been nice to hear at least once.
When Monkey was 2 1/2 we had to start talking about moving from the warm and fuzzy world of early intervention into the dog eat dog world of public schools…and I was terrified. I was so scared of these “IEPs” and these heartless school administrators who were going to snatch my beautiful child from my arms and stuff him into a classroom the size of a closet with no friends. Oy vey! Melodramatic much??
But the thing of it was, I simply did not know what the process was. I didn’t understand the law, it all felt fuzzy and out of reach and I’m a freaking paralegal, I can and do read statutes! Frequently. But this was my child, my heart, the stakes felt so much higher and that terrified me. When I get scared, I get angry. So, clearly, I was going to be a joy to deal with.
Early on I realized that I felt better, more in control, when we had a professional helping us. We hired an amazing advocate, who happened to be a mother of a child with special needs, and we muddled along. You won’t have to read too far back to know that the process still wasn’t easy but there were never any screaming matches and I never once punch anyone in the head ((though there were times when I really, really, really wanted to punch somebody in the fucking head.)). I call that
a win not losing.
Then something terrible happened. My advocate…had a baby. OMG.
Once again we were right back in that terrifying position of not knowing. This time, at least, we knew the process because we had been paying attention to our advocate. The real problem was that we still didn’t know the law. We knew that when we met with the district they would tell us…stuff…and we wouldn’t like this “stuff” but we didn’t know what to do about that. We didn’t know what to say to convince them that they were wrong about the “stuff” and that they should do what we wanted. See? Totally lost.
We finished Monkey’s last annual IEP solo and, though we stood our ground, we were still unable to convince the district that their “stuff” was actually “shit” and that they had no legal basis for pulling this shit on us. We got more of what we wanted than they wanted to give, just enough to leave us all unhappy, I think.
Now, obviously, C’s placement is awesome. We love his school, his principal, his teachers, his aids, his friends…everything. Love them. They rock. BUT, the fact remains…they…the district…the people on his previous “team” had no legal right to put him there, they had no legal right to take away things we had fought so hard, for years, to get for him. This still rankles. It still makes me think, I failed him. I failed to learn what I needed to learn in order to be a better advocate for him.
Last week, I took the first step in fixing that. I attended a Wrightslaw bootcamp and learned…not a lot…just what I needed to know to find what I need, when I need it, and keep this from happening ever again. I still have a ways to go, I need to read, read, read but I at least know where to start now.
I have a couple suggestions to share for any of you who are also blessed to have an IEP team…
- Bookmark this website: www.wrightslaw.com
- Look at the top left corner of the site and subscribe to their newsletter
- Attend one of their conferences, if this isn’t possible…
- Buy these books:
If you are going to one of their conferences, don’t buy the books…they run the ENTIRE conference out of the book. There are no slides, no notes. EVERYTHING you need is in those books.
It’s rather nice to be regaining a little feeling of control over all of this…
13 thoughts on “IEPs and the fear of the unknown.”
Our annual process is starting. So not looking forward to it but I get a small reprieve as they tried to get me to agree to not have the OT there because she is unavailable — notified me in his bag the last day before a two week break when our mtg was scheduled for the first day after break. Guess they’ll be surprised to get my reschedule message. Even my BSC thinks that wasn’t good and I need to request a new date. So love this Spec Ed World!! NOT!!!!
No IEP meeting for a child with fragile X should EVER be held without an OT present. That is a deal breaker!
I should have added IMO to that but I would like to see someone has any FX knowledge argue that our sensory overloaded and floppy kids don’t need an OT present, lol.
How about it. Everything about him is sensory related.
Would you, Eric, Holly, Ruth, Kathleen, Cindi, and anyone else like to fly down to attend our upcoming IEP? Come on, you all know you wanna!!
Other peoples IEPs are WAY easier to attend and fight through than your own child’s 🙂
I’m in, just know I’ll require 5 tickets bc I don’t travel alone 😉
Oh, I never said I was PAYING for you to get here. Seeing me should be enough incentive *batting my eyes*… ok, ok… seeing Melissa would be the only reason you would come, but whatever. Pshsh…
Oh alright, I’ll pay for Kathleen’s ticket… but only if you promise to maintain “therapy eyes” with the opposition at all times. That should freak them out enough to give us any damn thing we want.
YAY! On my way!
I wish we had a therapy eyes emoticon O O
I would come in a San Antonio minute! My price? Pizza at “Dough”!!! I work for cheap!
P.S. If you get the draft ahead (as you should) we could take a look at it for you!
Only if you all come help with mine! Actually, San Antonio was in my spring travel until the husbands conference was cancelled.