I have been struggling over the last 6 weeks, trying to find a way to describe what has been going on with Jack. I am not someone who jumps on my blog and bashes people. I also have been repeatedly thanked for my "grace" by the school system throughout this situation, and I do want to maintain my goal of taking the high road. However I do try to be honest about our experiences as a family. And I do want to share what we have been going through.
Before I do, I have a confession. When Jack first started school, and we were successful in keeping him mainstreamed for several years, I really didn’t understand what all of these other parents were talking about. We struggled in getting Jack the help he needed because he was labeled “high functioning”, but with the help of an advocate, we were able to work through that, or at least to an acceptable extent. So why were so many parents of special needs kids calling public school a nightmare? Fighting so hard with staff?
All it took was one bad experience. As a special needs mom, my children have attended 8 different elementary schools, (and they are only 6 and 9) not because of problems, but because different programs are just housed in different places. For the most part, we have had completely positive experiences. Even Jack’s initial elementary school, which has a reputation for being particularly difficult on special needs families, was over all very supportive. When he was moved to another program this January, it was not because he was failing to meet or make progress towards his IEP goals, it was because the teachers found he made the most progress in a small group setting, which this new program was said to offer for all core curriculum. And to be fair, the program did “offer” this.
I wish I could pinpoint what happened. Where it all went wrong. All I can really say is that the new school was not prepared to handle my son. That my son went from making progress in all IEP goals in a mainstream program (since pre K), to a “more supportive environment” and his progress completely tanked, per their report. I say per their report, because we saw a very different child at home, one who made great strides in his ABA goals, one who continued to be able to socialize with his friends from his old school with some support, one who successfully participated in an adaptive team sport, and enjoyed it! In school? I was told that he was not “capable” of “being with his peers”. He was fully pulled out for all academics, and often pulled out of the pull out (to a one on one setting instead of small group). He was isolated- not able to eat in the cafeteria at lunch, something that was NEVER an issue, not even for snack time in pre-k. Something that my 6 year old “severely autistic” son does daily at his school, because he is supported. His IEP progress report in June showed that he was not making adequate progress toward any IEP goals except....handwriting. Which by the way has always been the bane of his existence. No matter what justification was given to me, my opinion remains that the school did not want to deal with my son. They did not like that he, as my husband so eloquently put it “upset the apple cart”. This was a new, small program, and when I toured the school back in December I was shocked by how quiet the classroom was- my son is not quiet. He is not naughty- but he is not quiet. I think this was not appreciated by some of the staff. I think his need to socialize and unfortunately disrupt some of these other children was resented. I think that any and all possible behavioral issues were emphasized and examined under a microscope. When your child is at home on the weekend and you ask him to go to his room and do something and suddenly for the first time in his life he responds with “is that a threat?”, it is clear that someone has been asking him that same question.
I am not a mom who puts her son up on a pedestal. I have always advocated for more services for him, I have recognized his struggles and taken action as much as humanly possible. That being said, this spring was the first time I have ever experienced the feeling of my son seeming to be targeted. Things that he would say out of frustration in his old school setting were interpreted in the worst possible way at the new school and perceived as actual threats. And while he definitely was trying to express an emotion or frustration, it was never taken into account that he was scripting, something he has done since the age of 18 months old. He pulls statements from programs he has watched or books he has read, and puts them into his dialogue if it seems appropriate to his situation. When he was younger it worked against him because he was using sophisticated vocabulary and after people heard that, their expectations of his intelligence became super high. Now it works against him again because he is not just spewing facts anymore, but also trying to find a way to express his emotions, something that is very hard for many kids on the spectrum. He chooses a quote that sounds threatening, and is reprimanded as though it was an independent thought. Yes, it was inappropriate, I get that. But was it meant in the spirit in which it was received? Ummmm, no way. I promise that my 8 year old is not likely to seek revenge on you, BUT he does like to watch My Little Pony, and they do say that in an episode….
I mean, when he gets upset at home and cries he says “tears run down his spiny cheeks”. No, he does not have spiny cheeks, he is quoting from a book about a little porcupine that we read when he was two years old. He is telling me “I am sad, so I am crying.” And I get that, so I don’t look for whiskers, or god forbid quills!
I’m not suggesting he doesn’t have any behavioral issues, because he does. As our children get older, they are not maturing at the rate of their peers, which SHOULD be a duh for all parties involved in their care, since they are “special educators”. Our children’s atypical behavior, while it has not changed, does stick out more than it used to. And in a new setting- they are penalized for it. Inappropriately. They are judged harshly, they are treated like “problems.” What I am saying is that while it’s not fair, and it’s not right, we as parents have to prepare ourselves for this eventuality. It should not happen, but in a situation where someone does not know, or take the time to get to know our children, it is a distinct possibility. We went to his most recent IEP meeting (last Thursday) and it was suggested by the central representative that he would be ok in a type II special education program (which means still housed in a mainstream school, with the opportunity to interact with typical peers, as opposed to a type I, which is a separate day school). My response was this- he absolutely should have been fine- however after his and this family’s experiences this past spring, he needs time to recover. He needs to feel supported and have time build his self-esteem. When you are treated like an "issue” in a setting where you used to feel accepted and even loved, it can be very damaging. We are just now, in summer school, working through his tears each morning because he does not want to go back to school.
As a parent, this is not only heartbreaking, it is maddening. I, as Jack’s mom, have been traumatized by this experience. My level of trust in the school system has plummeted. I am at risk of becoming “that mom.” The one that feels the need to drop in for “surprise visits” to ensure my son isn’t locked in a closet somewhere. The one who calls every time my son comes home saying something negative, to make sure everything is ok. I do not want to be “that mom”. I never was. But my son has the right to an education in the least restrictive environment possible, and he has the right to expect fair treatment. And without question, he was denied both of these things this past spring. And he is my child who can talk to me!
At the IEP meeting with his school back in May, something was said that I will never, as a special needs mom, forget. In the presence of the least restrictive environment specialist, the school behavioral specialist, our IEP advocate, and Jack’s BCBA, we were told that this school’s program was there to support children with learning differences. We were told that they were not “equipped to handle autism and all the support that is needed for autism.” Our BCBA still brings this statement up frequently- as someone who has been in special education for over 20 years, she was shocked into silence herself. I want to say this, for the record. None of us are- equipped to handle autism when first we encounter it. I can assure you that John and I were not equipped to handle autism. And yet, here we are, doing it! Autism is being diagnosed at a head spinning rate- a rate that is increasing each and every year. If your school does not become equipped to handle autism, you will be doing a vast number of amazing children a horrible disservice. My son is phenomenal- and he will be back in a mainstream school in the next few years god willing. More education for mainstream educators is clearly needed, and needed quickly. My son did not deserve to come away from this experience feeling like he was a problem. And it will take years to get him past this. Equip yourselves, because if you are supposed to help children with “learning challenges”, I can guarantee you will be seeing more children with autism in your program.