IEP Eye-Opener

Self Contained.

Those are the words that have been looming over me since Charlie’s IEP on Wednesday.

The IEP itself was good–I’m at the point where they can tell me that Charlie’s achieved 24% of the cognitive goals of a two-year-old and I’m just glad to see improvement. Between you and me, I don’t see how a standard test could possibly measure the intelligence of my not-standard child. I’m beyond pleased with Charlie’s teachers/therapists/aides and the incredible work they do with the kids.

But I know these days will come to an end and I said as much at the IEP. Well, I mentioned that there are no special education classes beyond preschool at his current location and his teacher corrected me and said, “well, there are no self-contained classes.”

Now she didn’t say that Charlie would be in a self-contained class. She didn’t, but there it hung and I’ve been unable to let it go.

At my last job, self-contained felt like one step up from an institution. I don’t think there was a physically disabled child in the building, so the entire population of the class consisted of children with varying degrees of cognitive impairment. They had class in the basement and we rarely saw them. Some were friendly, but several were combative and hard to handle. The class was taught by sweet old woman who was retiring at the end of the year and who would often doze off in the middle of class.

At the school before that, self-contained kids cleaned tables in the student lounge. They also made holiday crafts out of Popsicle sticks and passed them out to the teachers.

In both cases I found the whole thing so stereotypical so as to border on comical.

boy in rocking chair smiling at the camera

In my mind, self-contained is not an option for Charlie. The things I want for Charlie are not to be found in that room. I want Charlie to be integrated into this community–in whatever way he can. I’m less interested in him learning how to draw a circle and more interested in him having a place–in the classroom, at restaurants, while shopping. “Containing” him won’t accomplish that. IF he’s got the intelligence they say he has (and I’m not saying I agree), then all the special classes in the world won’t make him normal. And if he’s smarter than they think, I don’t think that a class full of children with with cognitive/social/emotional issues doing crafts is really going to help him out.

My ideal would be him spending some, if not all, of his day with his typical peers. I’m aware that this would undoubtedly involve an aide. I’m aware that school districts hate to give kids their own aide.

And so it sits there, haunting me. Nothing has to be decided now–he’s got two more years where he is and I am very happy with that. But I know what’s coming. I know the decisions that will have to be made and the choices I will face. I just hope that I’m ready when the time comes.

Struggle

I have debated writing this post for over 24 hours. In the end I decided to write it, not because I can’t handle the situation on my own, but because it happened to me, because it feels wrong although I can’t put my finger on why, and because you guys often help me sort through what I’m thinking. So here goes. Would prefer not to get called to the principal’s office over this one, but I guess you sometimes have to pay a price for speaking publicly about your life.

I couple of weeks ago, I mentioned that I had a couple of contractions and that worried me. In addition to that, I’ve gotten big enough that walking the five blocks down to Charlie’s school in the afternoon and then pushing him back was starting to feel like an Olympic sport. By the time we got home, I would have to lie on the couch to recover.

So we decided to hire someone to help get Charlie home in the afternoons. He could take the bus, but as I have discussed before, the bus’s are un-airconditioned and I have no way of knowing how long he might sit there, unmoving, until the bus got rolling. Since Charlie’s neurologist believes over-heating could lead to a seizure, I decided this wasn’t a solution I was comfortable with.

I went to school and spoke with one of Charlie’s aides. Her daughter is a high school student and thought she might know someone who was looking to earn some extra spending money. As it turns out, her daughter is interested in children with special needs and she was interested. Perfection! I’d already met her daughter who seemed like a nice, responsible kid, and it’s a bonus that she’s already interested in/comfortable with the special needs population.

For a week and a half, my husband or I would meet her at school and walk with her as she pushed Charlie to our house. Seriously, this is not difficult stuff. I say it’s five blocks because one of them if very long. The truth is that the school is three and a half blocks from my house. So close, that every year the Kindergarten parade come within a couple yards of my doorstep.

Things have been going well. I’m more relaxed and rested in the afternoons–I’ve even managed to cook a few times. And then yesterday I got a phone call.

boy in pink rocking chair smiling at the camera

Apparently the school nurse had been by for a visit and was there when our helper-girl had gotten ready to take Charlie home. The school nurse did not like this arrangement. She went to the office to make sure that our helper was on the approved list. She was. I, as Charlie’s mother had not only put her name on the list, but had also mentioned it to the school secretary so that she was aware. I handled my end of the deal.

Despite having filled out the requisite paperwork, the school nurse STILL wasn’t happy and went to talk to the principal about this. Her big concern was that Charlie has a history of seizures.

Principal thinks long and hard about this (I wasn’t there, so I’m guessing) and determines that the only issue is one of liability. It needed to be clear that the girl I hired was not a school employee that they were not responsible for her actions. This is utter silliness–I hired the girl, she’s a high school student–there’s no way she could be mistaken for a school employee. But, as the relative of many, many lawyers I understood the instinct to cover your behind.

So I wrote the note and still I’m left with a funny feeling. A feeling that things are not right. From my perspective:

  1. I should have every right to determine who picks up my child from school. To call into question my decisions feels as if someone is calling into question my ability to parent, which makes me batty. My house may be a mess and I may only cook dinner a third of the time, but I do right by my kid and have every faith in my ability to make decisions about his welfare. More importantly, I’m not sure who gives the nurse the authority to question these decisions.
  2. I really don’t see what seizures have to do with anything. Charlie is too young for an emergency injection and all of his previous seizures (last one at age 6 mo.) have been the kind that barely look like seizures. The girl who walks him home has a cell phone, so she can always call me. Besides, the age of the person pushing the chair will have absolutely no effect on whether or not he has a seizure.
  3. I don’t like that I have to fill out more paperwork than anyone else. If it were to receive a service from the school, I understand that, but this is the simple act of having someone pick him up. I’m sure that other families are not forced to do the same.

So here I sit. Wondering if I should have done differently. Wondering if I should have fought the extra paperwork.  Hoping that I haven’t given in to something because it’s easy without thinking about the full repercussions that decision may have. Confused about access to school records, who has what rights, and not being sure exactly how much of Charlie’s personal information is being handed out willy-nilly.

Parenting is never easy and this is one of those days where it’s actually making my head hurt.

side view of boy sitting in a rocking chair outside

Thinking Ahead

Charlie is three. He’s had six wonderful months in Early Intervention preschool. He has blossomed: He greets me enthusiastically when I pick him up from school, he smiles in affirmation when you ask him questions, his curiosity is growing, and it’s becoming clearer and clearer that he understands you when you speak.

boy chasing vacuum cleaner

School has been a really good thing for us.

But it’s come to my attention that our neighborhood school doesn’t offer a special education after preschool.

It’s an interesting issue.

I know, legally, that they cannot deny Charlie services at his assigned school. There are a myriad of options to get him services at his current school. The thing is, we would be breaking new ground. Whatever we would decide, it would be something that had never been done before. I mean, as far as I can tell, they have no special ed services beyond preschool–no resource, but no inclusion, or indirect either. It would be a steep learning curve.

So as I look forward, I wonder if we want to be the guinea pigs? Do I want to fight for something unknown and untested? Or do I want to go with a system that is already in place?

I’m torn. Our neighborhood school is fantastic–people are sneaking their kids in there left and right. It’s considered one of the best in the district. Also, this is our community–we live here, shop here, and our other children will be in school here.

So, it’s something to stew over. Our experience so far has been wonderful–I don’t want to think about the moment will that will have to change. Maybe I’ll stick my fingers in my ears and hum for a while.

boy and his dad playing

**I’d like to make it clear that I am not complaining about the school or the district. It is common practice to centralize certain services. You can, within the law, request your child receive services at their home school, but most do not. **

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