It's like everything is skewed just slightly - but in a really good way. My grandson was with me the afternoon/evening of the first day of school. There was homework (this was not the good part). It was an autobiographical letter to the teacher, minimum two paragraphs in length (definitely not the good part!). There were deer-in-the-headlight eyes; there were tears; there was frustration.
I had to talk the boy through the entire thing. I had to explain that lots of people (in fact, lots of people from this very household) have trouble with writing. I even explained that there were lots of these people who had these troubles, but the people were just spread out, so it didn't always seem like there were lots of them, so it could feel like you were the only one. We talked about what kinds of things he could talk about (the teacher had suggested the prior year's events as one of the sources of information - the boy, of course, interpreted this as the only source). After we had talked about this, we talked about different ways of organizing the information.
Eventually, the boy was ready to compose. We had a false first start, but after talking through it, we got to where he was really ready, and he talked, and I wrote. It was not a literary masterpiece, but it was two paragraphs. He was SO happy. It was done.
But here's the amazing part: when I emailed the teacher, it was one of those emails that's part "he worked really hard," part "he has a tough time with stuff like this," part "let me introduce you to this aspect of the kid, since it's the beginning of the year and I don't know what info you have/whether you've seen the IEP/whether you've matched the IEP with the kid," etc. Since I don't know the teacher and he doesn't know me, and on top of that, I'm the grandmother not the mother, there are a LOT of eggshells upon which to tread here. The response was phenomenal! He told me how proud the boy was when he handed in his work, and that he had already been in close contact with the autism support teacher and knew a lot about my guy! He also thanked me for all the hard work I'd done with the boy (I don't think my efforts had ever been so acknowledged - ever!), and told me that this assignment was probably the hardest one of the whole year.
He then, wrote me the next day to tell me about the great job the boy had done on another writing assignment, in school! Wow! The boy had a really great teacher last year, and we didn't know how we'd adjust to someone new. Well, this one doesn't seem to be taking a whole lot of adjusting! Some teachers are just amazing!
I participate and lurk on lots of listservs and forums, and I am usually very interested in the thoughts shared by adults on the autism spectrum - about how they see the world now, about how they remember seeing the world when they were young, and about how they experienced their educational situations. Recently, I had the sad opportunity to read what a variety of people shared about their experiences with special education. It was, unfortunately, all bad.
Typical of the recollections shared, was that the time spent "in special education" was useless. Often, it was damaging. It wasted the youngsters' time, made them feel stupid, incompetent, "less than." So many people chimed in, on this one thread, about how horrible "special education" was. It was such a sad thread, to me ... a testament to how badly special education services are being provided to children. If children are being automatically placed in "slow" classes, merely because they have special learning needs, we are doing them such a grave disservice. So many of those children are bright, capable people! They need to know that it is because of their inherent strengths that they will be able to overcome the struggles that they also have. They shouldn't have to choose between the supports they need and their self esteem. It shouldn't be that children can either be in classes that acknowledge and challenge their intelligence, or receive the supports that their learning or other disorders demand.
In some schools/school districts, it seems there is a definite misunderstanding about what special education is supposed to be. Special education is neither a class, nor a curriculum. It is supposed to be individualized for each student. Just because a student has special education needs, does not necessarily mean that s/he should be in a classroom with all the other students with "special education" needs. Those needs could be (in fact, probably are) very different from each other. The needs cannot be properly addressed by putting all the students into one classroom. Many student (some would argue "most" or "all" students) do best by being in the general education classroom, with some supports in the classroom. And each of the students need to be in a class that meets the academic needs of that particular student, so if a student is a strong math student, s/he should be in a math class that will prepare him/her to advance appropriately in math, and to be engaged and challenged, rather than bored and frustrated. If a student needs remediation in one subject, it does not mean that s/he needs remediation in all subjects - in fact, it is rare that someone with special needs (or anyone at all?) has "even" level of skills in all areas.
So now, all these young adults, with these horrible memories of special education, are opting out of "special education" for their children. Is it the right choice? Are most school districts still making the same mistakes that those young adults experienced? I can't say. For my son, that is not the case, and I know I'm very lucky for this. My son is in an "approved private school." I am not a big believer in "inclusion." For some students, it's great, but for my son, it would not have been, and the approved private school he attends has been wonderful. He receives a high level of academics (which he needs), and the social supports he needs, and the extensive supports he needs for writing - the one academic skill where he struggles ... unless it is a topic that is self-chosen. Are there trade-offs? Of course. His "pool" of potential friends is very limited, since the school is so small, and the student body includes many who would not be appropriate choices (there is a wide age-range, and a wide functioning level). But for my son, that is not the primary concern - all he needs is a couple of friends, and he has them.
But back to the rest of the student population. If there is a whole population of students coming through whose parents won't allow them to receive the services they need, because they, the parents, received such poor services when they were students, what are we doing to our children? It is so necessary to demand of our schools that they truly provide the free appropriate educate (FAPE) that is mandated by federal law (IDEA). Refusing services, rather than demanding good services, is not the answer. The special needs of these children won't go away simply by refusing services. The children will continue to struggle - they just won't have the supports to which they are entitled.
The better school districts aren't providing "one size fits all" special education. That's really the bottom line. The school districts that are need to be stopped. Until that happens, the damage they are doing is multi-generational. When someone, or something (like a school district) injures a child, it is never "just" that one child who is injured. It is that child, that child's family, and that child's children. The ripple effects go on for longer than anyone can predict.
What does it take to have one's child evaluated? Privately? At one's own expense? You'd think it would be a slam-dunk - no big deal; easy-peasy, as they say to the kids in school.
Wrong.
Since any psychologist worth the fee will want input from the teacher(s) currently working with the child, you do need some, minimal level of cooperation from your child's school. And schools can be incredibly uncooperative ... "incredibly" being the operative word. What would possess a school to refuse to answer a psychologist's questionnaire, asking such "controversial" questions as: what are the child's strengths? what are the child's weaknesses? how could the child be better supported in school? etc. Really.
Why would a school want to turn a private evaluation, being paid for by the parents, with no possible request for reimbursement by the school district, into a confrontation? Why would they start spouting about "policies" that turn out not to exist and are then deemed "practices" but aren't written down anywhere? What do they think they could gain? Don't they realize that they are making it look like they have something to hide? Are they deliberately trying to make parents distrust them? What do they gain by that? By making parents have to beg, plead, insist, bring in advocates/lawyers in order to simply get a form filled out, what kind of working relationship do they think they are advancing with the family? What do they get out of this? How does making a parent feel like "one of those parents" help the school? How does it help a child?
And it circles back to ... what are they trying to hide. A parent who starts out with a nagging feeling that they (the parents) and the school might be missing something, and therefore want "fresh eyes" from outside, becomes a parent who distrusts the school, who believes that it is not that the school is missing something, but that it is deliberately withholding information and services from a family who needs it. The trust is breaking, maybe broken. What do they seek to gain here? The evaluation will, ultimately, get done. The information will, ultimately, be obtained.
And the nastiness of the process? So unnecessary, and that will last, and forever taint the process of negotiating and evaluating the services being offered and delivered. What a waste.
It's been a really long couple of months, in the education world. I feel like I've been eating and breathing IEP's, NOREP's and all that other alphabet soup that special ed is made of. School districts that talk about wanting to have open, trusting, cooperative relationships with parents set meetings but don't bother to tell parents about them. They come to agreements at IEP meetings and send NOREP's that "oops!" didn't quite say what was agreed to. When you say you need to have a meeting to go over the NOREP, since it didn't say what was agreed to, they look at you like you have three heads and claim that the NOREP NEVER says where the child is going to have a program, or that there will be a program beyond the 30 minutes a week ...
Yeah, an open, trusting relationship.
It's tiring.
I talk to other moms, and they're tired, too. But they're tired with their first child, with their only child. I'm tired with my grandchild. If I count him as a child, he'd be my fourth child. I can't even count how many IEP meetings I've sat through. I've never had a screaming match. The meetings are always polite and professional, even when there are disagreements. But not notifying the parent of the time and date, just because you're irritated that she's tired enough to bring an advocate? Really? What are the schools thinking? How tired does a parent have to be, when the parent has to take off from work, again, and hire an advocate, to come to a meeting that should never have had to have happened, to get a NOREP that says what it should have said to begin with?
Parents of kids with special needs are tired. We get less sleep than other parents. We need to learn more than other parents - about the specific issues our children face, the educational systems we deal with, the legal system, sometimes the medical and/or psychiatric systems, the "special" post-secondary options, etc. We tend to have more responsibility for our children, who are less likely to have peer-relationships that allow for "shared" responsibility (kids with special needs are just not as likely to spend a day off from school rotating among friends houses so parents have reduced needs for alternative child care). And with all this comes the emotional cost. Our friends with typical kids don't "get" it. They mean well. But they don't get it. So we find our real peers - other parents with kids with special needs. We find each other, we gravitate towards each other. There is a comfort level we can never find with the other folks out there. We adore our kids. We love them fiercely. But we need to be able to talk to other parents who know in the core of their being, what it is we're talking about. We need to be with people where we aren't anthropological specimens to be studied; or worse, anomalies to be feared. And so, we sometimes pare down our worlds a bit.
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