Hoping

It's funny how even though I'm blogging all the time now, I still fail to mention big things that are happening. For instance, we found a specialist for Owen!

Of course, you didn't actually know we were looking, did you? Because I never mentioned it. The bigger thing I never mentioned was the pressure we've been getting from the special ed teacher at school to put Owen on medication for anxiety.

The first time she mentioned it was at fall conferences. I was caught off guard, having never had anyone describe his behavior as signs of anxiety. I've since learned more about the anxiety that comes with autism and would have to agree that Owen's meltdowns do look a lot like anxiety. But medication still seemed like a big step, so I consulted his pediatrician who said there was no evidence that medication would be a good long-term solution for Owen and that, unfortunately, "some teachers like to make things easier for themselves."

So I started looking for a specialist and found that most of them had mile-long waiting lists and didn't take our insurance. When we went back to conferences the next time, I delivered the news that no, we would not be medicating him, but I was trying to find a specialist he could meet with to learn coping mechanisms (since apparently they don't teach such things in school). I thought the issue had been settled, but when we recently went back for his annual IEP meeting, the special ed teacher brought it up again, saying she knows where I stand on it, but that she really thinks treating the anxiety would help him in the classroom.

In the very same meeting, his classroom teacher - who is the one that sees him most of the day and has wonderful things to say about him - reported that he's having fewer meltdowns, but seems like he's having more trouble focusing...to which, the special ed teacher commented, "Well, that's the autism." Uh-huh...so you want me to medicate the issue that seems to not be as much of an issue, but there's nothing we can do about the spaciness?? (Needless to say, it became even clearer that we need a professional who is smart about these things.)

Naturally, I found the special ed teacher's push for meds to be irritating and somewhat distracting from the real issue at hand, which was how she planned to help my son in school, but it has since come to my attention that her behavior is actually illegal, seeing as she is not a doctor...which makes it all the more abominable, but still does nothing to help Owen.

(And I want to point out that I'm aware that many kids with autism do need medication and I am not against it as a last resort, but the idea that we would go from zero to pills - against the advice of his pediatrician, no less - is crazy to me. He is seven!)

So anyway, after much searching and calling and waiting, we are seeing a child psychology who specializes in both autism and anxiety on Thursday! And she's covered by our insurance!

I don't want to get my hopes up too high, but I am hoping that she'll be able to help Owen develop the skills to reason his way out of the fear that holds him back. And I'm hoping she can teach us how to help him. I'm just hopeful. 

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?

Distracted Genius

So, April is Autism Awareness Month. I realize that we still have 8 days left of March, but I didn't want it to sneak up on you...My goal this April is to include a fact or story or educational tidbit about autism in every blog post for the month. That doesn't mean that I'll only blog about autism next month, just that all my blogs will contain a note in recognition of Autism Awareness Month. 

Feel like joining me? The more people we can educate, the better the world will be for my little Owen and everyone living with autism. 

Speaking of Owen, today was the big 3-Year IEP Reevaluation Meeting. 

First of all, I just want to say how much it annoys me that these meetings are always so f*ing disorganized. It's not like this is a party planning committee or a casual get-together with friends. Note to public school system: When I walk into a room of supposed "experts" to hear what you have to say about my son and his educational future, I expect you to have your shit together. This includes actually reading what it is that you contributed to the report so that you can speak about it intelligently rather than reading it verbatim (grammatical errors and all) off the sheet of paper I have in front me. 

Alright, now that I've gotten that off my chest, I should say that overall the meeting was good. Or, at least, the information given at the meeting was good. He aced the Wechsler Preschool and Primary Scales of Intelligence test (phonetically known as the "wipsy" by educators). As we've known for years, the kid is a genius, only now he's got a documented IQ score of 125 to prove it. (Alright, if you want to get technical, a 125 is actually just the "very superior intelligence" level, not "genius," but whatever.) The psychologist who administered the test added that she thinks his score might really be higher, but by the end he was tired and distracted, so he didn't score as high on the final sections. 

The gist of the meeting was the usual: He is brilliant and he is socially awkward and has trouble focusing. How will all of this play out as he gets older? That remains to be seen. He will continue to get social skills support. We will continue to work with him on when he has to exert every ounce of his energy on focusing and when it's okay to relax and be silly (or stare off into space). We will try to help him learn to interpret facial expressions so as to avoid some of the embarrassing and awkward situations that such misunderstandings can cause. We will just keep doing everything we can and maybe the school's well-meaning, yet sorely underfunded and understaffed efforts will help a little too. 

All I can hope is that no matter how hard it becomes to navigate the social structures and classroom dynamics as he gets older, he can hold onto the knowledge that he is exceptional and always will be. And that we love him just the way he is. 

For more information on autism or to find out more about Autism Awareness Month, visit the Autism Speaks website.

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. 

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.