Status Check

Things are changing. Things are moving. You sort of feel it before you see it. Sometimes that feeling actually comes from what you "think" is a regression episode...except it isn't. It feels like a step backward, but if that constitutes a step backward, then what comes next is a sprint down the street.

I'm a bad Catholic (inside joke for those that know me well), but I generally try to participate in the annual Lent tradition. This year I chose not to give anything up, but to instead commit to updating this blog at least 2 times a week. It is a service to myself (hello therapy!), to my kids (who I hope will read this some day), and to the autism community (where I hope I can offer some comfort and hope to other parents and siblings).

I recently sat in an ARD meeting and willed myself not to cry. Not because it was sad, not because I was upset that I was a parent that had to be in an ARD meeting, not because I was having to fight for what I wanted for him. His teacher whom we adore, who has made such a monumental difference in our lives for the past two years, was making the formal statements required at the beginning of the meeting. This is the part where they describe the student when they first arrived in the program. This is the part where she said "Kellen came to us as a non-verbal student with a diagnosis of autism..." She went on to describe his inability to attend, to comply, to participate, and his utter lack of language, of communication, of engagement. It's as if I had forgotten where we started. It's as if it was a lifetime ago. When you focus on every little thing that isn't going as well as you'd like every single day, you forget to back up and look at how the whole world around you has shifted...how that progress means more than today's tantrum over shoes...shoes he asked for...by saying "I want shoes." You forget that that tantrum is progress, that tantrum is something you prayed for, that tantrum is everything.

Tears formed when she described his current status as verbal, as having made huge progress, as being "so smart". His teacher for next year was there, and she mentioned she was excited because he would be the only "talker"in her class. So here he is, at the top of his class already : ) She came in wearing a race jacket, so of course I loved her immediately. I think she'll be good for him as well, and I continue to be grateful for the amazing team that has been laid in our path. I'm excited for next year. Not so scared, not so sad, but ready to see where we go from here...because we are actually GOING somewhere...forward progress.

Today we got a glowing email from his teacher that he had had such a good day that she didn't want to put him on the bus! We've had a lot of good days lately. We've seen him celebrate his birthday, really. As in he opened the presents, he blew out his candle for the first time, he wore his birthday hat at school.

And minutes after the email, I logged onto his online tracking system for after school therapy and found myself staring at this graph on the front page.

About a year ago, I thought everything we had built for him was falling apart. The issues we were having with insurance, with the private school that we had put all our hopes into, I remember feeling like we had failed him. But as I sit here one year later, I have no regrets, no reservations, no "what ifs". By now, you should all know about my dislike of "everything happens for a reason" (and for those of you that are new, that developed after I endured 5 miscarriages in a row...and the reason for that was??). Anyway, I keep finding myself (and honestly even with the miscarriages...hindsight and all that jazz) thinking it again. Maybe we went through this therapy drama last year so I could appreciate what a gift it is to be able to do this for him. So that we could migrate to this dual public school/ private therapy system that has worked unbelievably well this year. So that we could get all of the right people in his life at the right time. No regrets, but definitely more questions...

Because he is progressing so well, we've got to carefully think about our next moves. Everyone believes that he has tremendous potential, so it becomes even more important to continue to keep that elite team, to continue to let that team evolve, and to let Kellen be our guide. When we started this journey, we knew there was a chance that we'd be faced with significant limitations, that we could hit a ceiling very quickly, a ceiling that would give us a few distinct choices for his education and life path. But that didn't happen. His possibilities are growing exponentially every day. With every word, with every look into my eyes, even with every stubborn tantrum. Now is when the hard work really starts. Now is when we rewrite the book. He will have far more choices in life, and we have to be good guides along this path. But he's already showing us that we haven't got a clue. He's already showing us that there are choices we haven't even dreamed...but he has. He isn't held back by what this world says he "should" do...and that's going to make this fun to watch.