2013 Update

Oh, twenty thirteen, it's been quite a year so far. Time flies when you're busy, even if you're not always having fun.

I'm coming down from a few busy months, starting with my birthday weekend in San Francisco, followed by my trip to San Diego with Jelly, then her birthday, and peaking on Mother's Day with Listen to Your Mother. It all came to an exciting conclusion last Friday when I had all four of my wisdom teeth pulled.

At the beginning of the year, it all seemed so far away, and now here we are. One more month and the year will be half over.

This time last year, we were right in the middle of some nasty IEP meetings. And although that was a very tense time, and meant a significant change for both of us, I will never regret pulling Moe from school.

That decision doesn't exempt us from IEP season, however. Because this year would be Moe's third since he started school, he was due for his triennial assessment. For those of you who don't know, while a new Individual Education Plan (IEP) is written every year, a full assessment is generally done every three years. Moe's first with the district was when he left early intervention, funded by the regional center, and entered our district's autism preschool special day class.

The assessment started last week, and involves several standardized tests, questionnaires for me, an OT assessment and some observations. We know the people doing the assessments. They are kind and smart, though seeing them again has brought up some pretty strong feelings.

At the end of the assessment, we will have an IEP meeting. The district will set goals and make some offer of services. We still feel pretty strongly that a classroom environment is not appropriate for Moe right now, but we do want him to return to school eventually, so we continue to go through the process.

Moe turns six next week. We won't have a party, but we will have cake. I will try to make it a special day for him. I am trying not to think about what might have been. How, in another version of our life, he might be finishing up kindergarten. That we would be planning summer vacation and choosing a camp.

Instead, I will continue putting one foot in front of the other, and start thinking about what the second half of the year may bring.

Rain or Shine

It's been a hard few weeks. Really hard. Moe hasn't been sleeping. He's dysregulated and aggressive. He bit 3 people and has scratched the hell out of my arms. On top of that, we got the final report back from his latest psych assessment. I won't bore you with the details but it is always hard to see the numbers that compare your six year old to a toddler. These numbers aren't supposed to bother me any more. But they do. Of course they do.

There were good things too. Jelly turned four, and we had her birthday party. I decorated her room with fairy decals while she was at school. I made cupcakes for the party. ("How to Make Fairy Cupcakes, Part 2" will be coming soon. See here for Part 1.) She had a great time. But Moe had a hard time at the party, and Jeff spent much of the time managing him. It put a damper on things. I try not to be resentful.

We had our last rehearsal for Listen to Your Mother and it was nothing short of wonderful. The show is going to be great. I'm getting more blog traffic and opportunities since being selected as one of Babble's Top 30 autism blogs of 2013. And yesterday, I had a job interview. I'm excited about it. I don't know how it will go--it is always so hard to interview over the phone--but it made me realize I do have choices. There is more for me yet.

This autism gig is hard. But as I think about many of the good things in my life--friends, this blog, the opportunity to read something that I wrote in front of a live audience--I am realizing that many of these are not despite autism but because of it. I focus a lot on the opportunities that Moe, or more accurately, Moe's disability, have taken away from me and my family. But there are good things too.

Jeff and I had the opportunity to see David Sedaris live on Monday. Moe was melting down as we were leaving and I was stressed about leaving him, even in the very loving and capable hands of my BFF. I wasn't worried about him as much as the idea of putting her through one of his meltdowns. He was overtired, so we gave him his melatonin early and went. We needed to go out together, to do something normal. We needed some fun, to prove to ourselves that even when things suck, we can still go out and laugh. It felt good.

When Moe is on a down cycle, there isn't much we can do but ride out the storm. It's an appropriate analogy, because much like the weather, these cycles will always come and go. Sometimes I don't recognize myself anymore, I am so steeped in this life of special needs. But I am slowing figuring out how to carry on, to reclaim myself, rain or shine.

Measurable Progress

Someday I will share the full story of how and why we pulled Moe from school. For now, it is enough to know that he was not progressing there. What started as a desire to secure additional extended school year services (for summer and other breaks) turned into a full independent evaluation done by a very well respected child psychologist on our dime. She observed Moe in class on two separate occasions, and it was her professional opinion that the school district's preschool program was not appropriate.

Moe has been doing an in-home ABA program since June. He receives about 20 hours a week of in-home behavior therapy as well as an hour a week of speech. In the beginning, the difference was remarkable. While the school tried to convince us that Moe wasn't meeting goals because of his "rate of learning," Moe mastered his programs at home quickly. The school and our ABA provider use the same program so the comparison was easy.

Jeff and I have been thinking a lot about where we want Moe to be next year. Should we continue with a home program? Get him back into school? And if school, which one? We know the district's program is simply not appropriate for Moe, and there are several non public schools in the area. Last year, I visited seven of them, and there are two or three that might be appropriate, though they all have serious trade-offs. We will need legal action to get Moe in one, and we need to be sure the one we choose is the right fit.

I've also been questioning a little whether his home program continues to be effective. Moe is bored at home sometimes. The program is highly scaffolded, meaning that program progresses in small, incremental steps. While his early progress was remarkable, it can be hard for me to see the progress when the steps are so close together. For example, to Moe one sorting task probably looks a lot like another, even though we've added more items or distractors to make the task more challenging.

In order to help us answer these questions, I took Moe to see the same psychologist who evaluated Moe last year. Dr B met us in the waiting room, looked at Moe, who waved to her. She said "such a difference from last year. I can see it already."

I was nervous as we went to her office. Moe can be aggressive and non-compliant and frustrates easily. I really wanted her to see him at his best. This assessment isn't about qualifying for services, it is about making the best decision for Moe. I wanted her to get an accurate picture of Moe's skills.

He did great. By that I mean, he did his best, with no behaviors to get in the way. He showed what he could do and where he still struggled. He sorted. He matched. He imitated and approximated words and blew bubbles. He had trouble with a few areas I know he knows (like pointing to body parts), but Dr B will be here Thursday to see him in a ABA session as well.

This was the first assessment I can remember leaving with a smile on my face. I did not fall apart in the car on the way home. Moe has made progress.

Moe is still severely delayed. He's probably at a 2 year old level or younger for many things. But he's doing better. He's learning. As we were packing up to leave, Dr B said to me  "It is nice to see him learning things and not just pushing toys around in shaving cream."

And in that moment, I knew that we made the right decision to pull Moe from school. I know his progress this year has been real and significant. I still don't know what we are going to do next year. But I do know we were not being unreasonable to demand better for him, that his lack of progress wasn't because of his learning, but because of how he was being taught.