Special Needs

So, do you watch Parenthood? If you have kids, you really should. I was totally brought to tears last week with the storyline involving Max (the character with Asperger’s) befriending his classmate in the wheelchair. To me, it was like once they gave him a break from having to try to fit in with the typical kids, he was able to find someone he really connected with. I cried. A lot.

We recently had Owen’s three-year IEP review with his school – you review and update an IEP every year, but the three-year is where they do testing and observations to make sure the kid still qualifies for special education services. We didn’t think much of it really since we knew he’d still qualify for services.

The outcome was a little surprising, though, in that they recommended that Owen move from receiving level 2 special ed services to level 3. (Think of typical kids as level 0s) It means that he needs more help than he’s been getting.

On the one hand, this seemed obvious, knowing the trouble he’s had since starting third grade. On the other hand, this isn’t what I wanted to hear. I don’t know whether this is common or not, but ever since Owen was diagnosed and it was clear that he was on the high-functioning end of the spectrum, the people (“the experts”) we've talked to have always given us a pep-talk of sorts along the line of “he’ll be fine.” More than one person has said things to the effect of, “He might even outgrow his symptoms.” And I guess this created an expectation within me that all of this special ed stuff was only temporary…that we didn’t really need to go too far down that road.

I now realize that I was placing that expectation on him and that it was unfair. Really, it’s wrong for people (experts, even) to use that as some sort of carrot. Like, that’s what we should be looking forward to…the day that he can fit in. The day his autism isn't so much damn trouble. And I worry that it was that mentality that finds us here now, at age 8, putting him into the center-based autism program with the autism specialist, when maybe he could have been benefiting from it all along. Maybe things didn't have to be so hard.

I worry, you know. I worry about everything. But in this case, I worry that we should have known to do this sooner. I worry that I've been resisting the special needs realm (getting by with only the bare minimum of help) because I equated it with lower expectations and I never want anyone to expect less of him than what he is capable of. I know that sounds really small-minded of me and I thought I’d gotten over the label thing years ago. Obviously I know that “special needs” does not equate “lower ability,” as I gave birth to the counter evidence, but I’ve still been afraid that many of the programs are geared toward the lowest common cognitive denominator – which, maybe in some cases, they should be – and so I’ve never really felt like we belonged there.

I had a glimmer that I had been thinking about this all wrong just a few months ago when, after a frustrating experience with the local ski school last year, we enrolled him in the adaptive recreation ski program offered through our city. I began to feel relief just filling out the registration paperwork. Questions like, “Describe your child’s conversation ability” and one the choices was “Limited, except for topics he chooses.” And “Describe your child’s ability to cope with stressful situations.” (Seriously, I think they should ask that about all kids.) And he ended up getting one-on-one ski lessons with a teacher who seemed to have unending patience and positive words for him.

This is all to say that trying to hold him accountable to expectations set for people with neurotypical brains isn't asking him to aim high – it’s asking him to develop coping mechanisms rather than helping him hone his innate abilities. So we're trying this new thing and we’re not going to let anyone have lower expectations of him; we’re just going to create realistic expectations and then actually give him the help he needs to meet them.

And hey, maybe along the way, he’ll make some friends who have similar ways of viewing the world...or at least a similar obsession with Pokemon. And maybe that will be exactly what he needs. And it might also be kind of special.

Downhill

I always kind of brace myself for the emotional kick in the chest that often comes when introducing Owen to new people and experiences. I should be used to it after 4 1/2 years (crazy that it's been that long since he was diagnosed), but expecting it isn't the same as being used to it. It still knocks the wind out of me. I'm writing this while still catching my breath.

We enrolled the boys in snow sports. Aidan's been asking to snowboard since he was 5, so this year we finally signed him up for a local team where he can learn and hang out with other kids and eventually compete if he wants to. He tends to make friends easily and we don't have to worry about whether people know what's on his mind (he never stops talking), so signing him up for activities isn't a source of anxiety for me.

Owen, on the other hand, tends to meltdown when he's scared or frustrated or overwhelmed. Learning new things - physical things - can be really hard for him, so I was a little relieved when he said he wasn't interested in snowboarding. But he surprised us by saying he wanted to learn to ski. We live next to a ski hill, so we signed him up for lessons.

I had a knot in my stomach the whole first lesson, knowing he was up on that hill with strangers and having no idea how he would do. But when I picked him up, he was beaming. He didn't just love it, he felt like he was actually good at it. He told us that he was the best in the class at turning. He talked about it the whole afternoon.

I sent him off again last week feeling great, knowing he was excited and that he was learning to do something that he might actually use the rest of his life. Again, he came back chattering away about how much he liked skiing and how next week they were going to go up the big hill, which would include riding the chairlift! He was so excited.

So when we dropped him off today and the teacher asked us to stay for a minute, I guess I was a little caught off guard. I thought we were in the clear and that somehow, someway, skiing had turned out to be an activity that he could learn and enjoy just like all the other kids.

Alas, Owen's group scooted off to the bunny hill and the head of the program came over with a furrowed brow to tell us that she didn't think Owen was going to be able to stay with his ski group. "He's getting really frustrated," she explained, "and the instructor is having to spend all of her time on him." Bam. That was the kick. She went on to tell us that it could be a real problem to take him on the chairlift, so he might be put with another instructor so he could spend more time on the bunny hill. Kick #2.

Owen, of course, wasn't there to hear this - the adults always talk about these things behind the kids' backs. I know they think it's kinder that way, but all I could think about was how upset he was going to be if all the other kids went off to ride the chairlift and he was suddenly left with a stranger on the bunny hill. He was so excited. He thought he was doing so well.

And now, here I am, feeling once again like it's my fault for trying to pass my kid off as "normal." I feel bad. Because maybe I should have called out that he has autism when we signed him up. But what would they have done with the information? They don't offer special classes for kids with autism - and even if they did, he likely wouldn't fit in there, either, because he's so high functioning. He doesn't qualify for adaptive phys-ed, which means he participates in athletic activities at school right alongside the rest of the kids. He's not physically unable to participate and so far, I haven't found any type of special instruction for kids who are easily frustrated.

Naturally, following that guilt comes the guilt that I should be thankful that he can participate in the first place. That I have the option of sending him off to ski class at all. That he is so high-functioning. That somehow, despite the fact that he's apparently been having meltdowns out on the ski hill, he's still been coming back in with a smile on his face. And of course I am thankful, but I still want him to have the same opportunities as everyone else. If he wants to learn to ski, I want to make that happen. It sounds so simple.

I keep thinking that not everything has to be harder for him. Maybe I'm still in denial. Maybe I just don't know what else to do. Am I being unfair by throwing him into these situations designed for typical kids and hoping that he'll adapt, or am I helping him learn to function in life? I don't know. What I do know is that I'll put up with endless kicks in the chest if it means he can grow up knowing he can do anything he puts his mind to...I'm just hoping that I get the brunt of those kicks and not him.

Be Serious

We got the revisions to Owen's IEP today. One of his short term objectives reads as follows:

"Owen will be able to to have one or less reminders of not being silly when the situation calls for listening to instructions 75% of the time."

Do you think that if the situation calls for listening to instructions only 50% of the time, then he'll get two reminders?

But really, questionable grammar aside, I can't help but wonder how many typical five- and six-year-olds could have this listed as an objective, were they scrutinized the way Owen is. 

I'm not saying he couldn't use some work in the listening department - he definitely could - I think I'm just reacting to this idea that him being silly is the issue. As if silliness is this obstacle he must overcome. 

Do we send our kids to school to make them less silly? Is that an educational objective?

3 Years in 30 Minutes or Less

It's time for Owen's tri-annual (that means every three years, right?) Special Education review...that's probably not the official name, but it's basically the school district saying, "Hey, it's been three years since we really looked at why we're giving this kid services, let's test him some more." They do annual IEP reviews already, plus we meet with all of his teachers at conferences, so I'm not totally sure what the purpose of this review is, but it seems reasonable to me that they would review his services and his educational diagnosis as he gets ready to become a (gasp) first grader next year.

As part of this review, I have to be interviewed by the school social worker about his development. According to said social worker, I'm supposed to tell her about his development over the last three years. So basically ever since he got diagnosed...I am feeling a bit overwhelmed by this, which maybe subconsciously is why I somehow keep scheduling this interview at bad times and then having to call and reschedule it. But I think it will happen today, finally. 

This gets at my issue with the fact that so much of the diagnosis and treatment of autism relies on the parents' ability to remember and articulate every development, delay, concern, and quirk. I'm not blaming anyone for this - it's simply where we are in our understanding of the autism spectrum - but, as the parent of a kid with autism, it's kind of a lot of pressure. 

Autism is part of our everyday lives. I don't consider it an everyday struggle because it's our "normal." We're used to it, we know how to work with it, we know how to help Owen avoid meltdowns or come out of them when they happen. We don't always like autism, but it's part of us in such a way that makes it difficult to stand back and analyze, or explain to someone else...especially someone who doesn't know us. 

So what if I don't mention something important because it doesn't seem like a big deal to me? What if I've forgotten yet another important milestone (seriously, with twins, it all becomes a blur). I think he's doing great. He is happy. He reads at a second grade level. He is funny. He is silly - sometimes too silly. Is there a special program to help him stop being too silly at school? 

I know they don't expect me to know what he needs, but I don't fully trust them to know either. I don't feel that the the special services he's been getting this year have made any difference (good or bad) for Owen. Does that mean he needs more services or less? I don't know. Should I go into this interview with an agenda one way or the other? Would it help me sort out everything I'm supposed to remember from the last 3 years?

As usual, I suppose all I can do is try my best and hope that it's enough. 

Horror in the Classroom

My cyber-friend Judith brought this CNN article to my attention today. It’s about the use of seclusion or “quiet” rooms in the school system. These rooms are used for kids who are deemed “disruptive” – often these kids have autism.

This article talks about a 13-year-old boy who hanged himself while locked in one of these rooms. His parents didn’t even know the room existed, let alone that their son was repeatedly being left in there alone when he should have been being educated. The school didn’t tell them because, legally, they didn’t have to…because there are little-to-no regulations about the use of these rooms.

The article reminded me of this New York Times story, “Calm Down or Else,” which discussed the mostly-unregulated use of restraints in school for kids deemed disruptive. Several kids have been accidentally suffocated because they were restrained for so long.

Again, many of these kids have autism – some of them can’t even speak, so not only can they not defend themselves, they can’t go home and tell anyone what is happening to them.

Aside from my obvious horror, my reaction to these stories is always, Thank goodness Owen isn’t violent. Thank goodness he can talk. But isn't there something wrong with that? That I'm thankful he'd at least be able to tell me if he was being mistreated?

And even though Owen isn't violent, he does scream sometimes. He has meltdowns. He’s been known to flail a little when he gets really mad. What if one of his meltdowns happened to coincide with a teacher’s really bad day? What if he just pushed her over the edge in that particular minute and she reacted just a little too severely? What if my little boy was thrown into a locked room, alone, and left to sit for hours on end?

Kids are being abused and killed at school. At the hands of the people their parents are trusting to educate them. Yes, teachers are under-trained and overworked and have too many kids to keep track of, but it’s not okay.

I completely understand that all children deserve to learn in an environment without constant disruption. I wouldn’t want one student taking up my boys’ teacher’s attention the whole day, either, but come on. There has to be a better way. There have to be rules and regulations. At the very, very least, a parent should have to be told each and every time a restraint is used or their child is send to a quiet room.

My boys’ school has a quiet room. They told us about it at the beginning of the year (if you read the CNN article, you’ll note that many schools don’t tell anyone about these rooms). The teachers send kids there when they get in trouble or if they need extra time to finish their work. Owen got sent there once because he didn’t finish his work on time. I didn’t find out about it until more than a week later when he happened to mention it.

Having already read that NY Times article, I panicked. I spoke to his teacher and asked why and when and how often he had been sent there. More importantly, why wasn’t I told? She told me that he had only been sent there once and it wasn’t because he was in trouble. She said that if he had been sent there for a behavior issue, I would have been told. He hasn’t been sent back since.

Aside from being vigilant with our own kids, what else can we do? I don’t know, but there has to be something. No one should have to fear that their children are being abused at school.

It Has Begun

Day 1: The boys woke up excited this morning. We took pictures with their little backpacks and made sure to eat a good breakfast. 

When we got to school, things were so chaotic that there was no time for tears. Owen had a little fit about hanging up his backpack, but I think he was overwhelmed by all of the noise in the hall - I'm hoping he'll get used to it. Then Aidan got upset because he ripped his name tag by accident (they are forced to wear nametags around their necks for the first week), but the teacher fixed it with a little scotch tape. 

When I kissed them goodbye, they were already absorbed in the school's "newscast," which they play every morning on TVs in the classroom (I haven't decided how I feel about that yet). 

Pick-up went well too - we're supposed to wait out in our cars for the kids to exit the building, which is weird, but all of us moms had gathered outside the door to greet them on their first day. The sub special ed teacher walked out with the boys so he could introduce himself. He already seems to care about Owen, so I think we're off to a good start there (despite my concerns yesterday). Let's hope the real teacher is as warm and fuzzy. 

The boys were bubbling with excitement. According to them, they colored, they read "The Kissing Hand," they sang a song, and they ate a snack...pretty much everything you could hope for in a day of kindergarten. 

And so it has begun...let's hope the whole year turns out as well as today. 

Getting Oriented

Tomorrow is the official start of kindergarten, but today was orientation. I really tried to go in there with a good attitude, but in the end, my cynicism was only strengthened. 

As soon as we arrived, they separated parents and kids, which is okay, except that the kids had to spend an hour in a classroom with a teacher that is NOT their kindergarten teacher, while the parents endured a presentation by the actual kindergarten teacher that could have just as easily been read from the nicely stapled packets we all received. The gist? 

• Bring a snack -- but under no circumstances should a peanut come into contact with that snack. 
• Keep your kids home if they're sick -- but you are a negligent parent if you don't send them to school any other day, including if you take them on vacation to Disneyworld. 
  
• Bad kids go to the "quiet room" -- you don't want your kid to go there.
• Your child will have homework every night, which means you will have homework every night because you have to sign off on everything once it's done.

So what can I say? I wasn't impressed. The teacher seems nice enough, but why didn't anyone think to provide a time where the kids could actually meet her? When I went to get the boys from the playroom, Aidan said, "Our teacher wasn't there!" He was (rightly) confused. So I brought them back to the parent-only room to introduce them to their teacher.

I asked their teacher why we haven't received a scrap of information about who Owen's special ed teachers will be. And why weren't any of them there? I know my kid isn't the only one with an IEP - shouldn't this orientation be a little more inclusive? 

As expected, their teacher didn't know anything about it, but she did offer the useful tidbit that the woman in charge of coordinating special ed services at their school had to have surgery and would be out for 4 more weeks. Um, so what does that mean to me? Their teacher guessed that there just wouldn't be any special ed services for 4 weeks (or more)...

So what you are telling me is that my son will have an entire month to settle into the "typical" school routine and then you will begin yanking him out of class to work with teachers he's never met? Brilliant. 

I got home and called the principal to see if he could provide a better answer, but given that it's the first day of school for the rest of the grades, I'm not holding my breath on a call back today. 

I know, it's probably all my fault. I should have called the district back in August when I still hadn't heard anything, but stupid me figured it wouldn't be that big of a deal to simply speak to the teachers at the orientation. I mean, the plan is already documented, all I needed was to meet the people involved. 

Add to all that the fact that they are going to spend next week writing the letter A and learning to read the words I, a, and is, and well, I just don't have a lot of faith. 

And speaking of faith, while we were getting on the school bus that we were all forced to ride around the block (even the kids who aren't going to take the school bus), Aidan pipes up with the question: "Why do all the churches have plus signs on them?" Those are crosses, honey. "What's a cross?" 

And there you have it. Our complete lack of religion exposed before all of my children's would-be friends and their parents. It's not that I'm ashamed that I don't subscribe to organized religion, it's just not a great icebreaker...especially out here in suburbia. 

With this much excitement in a 90-minute orientation, I can only imagine what tomorrow will bring. Here's hoping the kids' enthusiasm eclipses my cynicism.