Let me begin this post with a shout out to parents of children with IEPs across this great land:
You’re amazing. I don’t know how you’ve done this for years. For serious.
Now, here’s what leads me to that shout out. Hunker down, it may be a long one.
J will transition to the public school system following his birthday in June. The recommendations laid out by the Center for Special Needs at Floating Hospital are pretty strict and pretty clear. Full year schooling. Extremely low teacher student ratio. ABA, Occupational and Speech therapies. Chances for interacting with larger, neurotypical peer groups. Before this process ever began, we had in hand current evaluations for J: OT evaluation, Center for Special Needs evaluation (where his autism diagnosis was refined and his Sensory Processing and Expressive/Receptive language disorder diagnoses were added) and within a few weeks a thorough Speech evaluation was added. This mom, she is prepared in terms of knowing what her son needs and being on top of being informed about his condition. Every report gets scanned into the computer, saved to Google Docs, and printed for all of his therapists to have on hand as well as the schools.
Our local schools had a meeting with us early in March to discuss how this process would play out. Their director of special education for preschool through fourth grade sat in the living room here and allowed us to question her. I immediately expressed concerns about my son being evaluated too much – that he already had a lot of current evaluations and every time we did one, it was no picnic for him. She said she understood and would read through all of the reports provided for her and set up something called an arena style evaluation. This means that several disciplines would meet with us and evaluate J at one time so as to prevent just what I was concerned about. It would be a one shot stop and while difficult, once it was done it would be done. The only separate thing would be to observe him at his weekly playgroup.
Great, I thought! This wouldn’t be so bad! I was feeling a little more optimistic about the process ahead of us.
And then it all fell apart.
A letter came stating that they wanted a separate speech evaluation, a separate occupational therapy evaluation and they wanted the observation. I was stunned. This was nothing like what was described, yet my hands were tied. We only have a finite amount of time to get this all done after all. I reluctantly consented to the multiple evaluations and waited to hear back from the schools.
The occupational therapist and the speech therapist were prompt in reaching me and the appointments were made easily. Both of these ladies were extremely professional, kind, and J took warmly to them even though he struggled mightily at each evaluation.
No one amidst this has ever talked to me about going to playgroup. This group takes place once a week and hey, there’s only so many of them left before we need this IEP to be drawn up and consented to. I never heard a peep. I walked into J’s speech evaluation however and was blindsided by the school psychologist and the BCBA who decided it was time to grill me or something. I have no idea why I had to answer all the questions I did answer. They pretty much ran me through every autism checklist I have already gone through with various professionals before. It sincerely feels as though they were trying to get me to answer somehow differently, like J doesn’t actually have autism and his diagnosis is full of baloney.
Yeah, cause what this kid goes through every day is a freakin’ joke.
During this meeting and questioning I did mention, quite clearly, that that very evening J had his sleep study scheduled and we were not looking forward to it.
… So when the school psychologist and BCBA showed up at playgroup the following day, why were they shocked that J wasn’t there? And furthermore, why did I get the nastiest voicemail accusing me of keeping J away from group on purpose (wtf is that?) and telling me they were going to be there the 9th of May and I had best let them know in advance if he’s not going to be there.
What. I can’t even with these people.
The schools informed early intervention, the people who run the group, that they were coming. Not me, his mother, who keeps his calendar and schedule pretty thoroughly. If they had even thought to give me a shout they’d have known he would not be there that day due to the study the night before.
Now I am engaged in a back and forth of passive aggressive email replies and voice mails.
This is what makes me the most angry: In just about two short months I have to trust these people with the welfare of my son during his school day. I have to believe his needs will be met and he will be well cared for. These are people who cannot even get communication correct with me, and I have to trust them with his every need for several hours a day? I know these aren’t the classroom teachers but when the people running the show behave this poorly, it reflects on all involved. If they have such little respect for me, his mother, how can I believe they will have respect for him and his classmates? How can I believe they will teach these children to respect others and to expect to be respected in and of themselves?
My level of disgust runs so high right now that I just wrote this long entry to get some of it out. My son does need a lot of support going in to school. He deserves this support. If this means I am going to have to fight to get it, well, so be it. A fight it shall be.