A Year Ago Today

One year ago today, Rob & I took T to a children's hospital for an official diagnosis. We made a conscious decision not to diagnose him before then because a diagnosis wouldn't have changed any of the therapies we were doing for him. We were already doing everything we could and he was getting full services from the public schools - we didn't want to label him too early and have that sitting in his medical and educational records until we were sure - and ready. We knew that it was at a minimum PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) but more likely was probably Autism.

We drove there the day before and spent the night at a hotel nearby. Our appointment was at 8:30 the next morning, and we didn't want to have to worry about finding the place after making the long drive, let alone have T go through that entire day on the Dramamine he needs whenever we go more than 20 minutes in the car. We wanted him to be at his best even though we were in a new place, in a new room with new people. Not the best scenario for these kiddos.

The procedure took the whole day. It was professional & thorough, and well done - many people spent time with us and with T, from a pediatrician to a child psychologist and speech therapist. They observed, asked questions, and midway through the afternoon broke the news to us that we expected. I don't remember the exact words, but it was something close to "The best way to explain your son's behaviors and challenges is to say that it is autism." Words were spoken after that, but I do not remember them. They were kind and supportive - that I know - and I think it was recommendations for what to do next. I recall several reactions: relief that we finally knew, feeling like I was kicked in the stomach, numb, suspended in time...and all the while I sat there with Rob pretending to listen. After a few minutes, the child psychologist took a moment, looked at us and gently said, "So, how are you with this?" I said "Okay" and then burst into tears. I cried hard for a minute or so, with Rob rubbing my back and the psychologist giving us a moment, then I stopped, dried my tears, ceased the sobbing and said, "Okay, what do we do now?"

On the drive home, we called our family. They were all awaiting the news, and all were true to their loving, supportive selves. We are blessed with a family that has supported us all the way, sharing our concerns, loving us and not undermining or doubting. This is a huge blessing.

It took us about 2 months to do anything at all with the news. It was all we could do to just keep moving forward, let alone act on any of the recommendations. But by late December, we had met with a local child psychologist who specializes in autism and we had requested a reconvening of T's case conference at school to get him into a different preschool. It took a while, but we hit the ground running.

My challenge over the next several months was feeling like I was never doing enough. I'm a rule follower. I like checklists. I like following guidelines. I mean, I'm even a classical musician, for crying out loud - I bring to life what someone has already written down. I do not do jazz or improvise. Period. But here's the deal: there is no one way to do this. No right way. Each child with autism is slightly different, and each needs his/her own combination of treatments, therapies, educational practices, and even diets or nutritional accomodations. We have had to become instant experts in a field that is exploding with research and new treatments, and I've spent many months feeling completely inadequate, filled with self-doubt, and thinking that I'm not doing enough.

Today, I can honestly say that I feel exceedingly good about what all we have set up for T. It has been a long road, and we have just begun. Just a few days ago I learned of another therapy that sounds like a great fit for him. It never ends. But at least we are on top of it now, and T continues to amaze us with new wonderful things everyday. Tonight at 10 minutes before bedtime, he took the potty and bathtime PECS pictures off the bathroom door and handed them to me for the first time, telling me that he needed to go potty and wanted a bath, too. Brilliant child. Something new everyday. I am filled with wonder, amazement and love.

My First Post

Hello, and welcome to my blog. I find it hard to believe that I'm doing this, since it is usually my husband that drags me kicking and screaming into any new technological world - and he's away this week! A dear friend told me last night that she has a blog just to keep all the grandparents up to date on her children's activities and antics, and I thought it was a brilliant idea. So here I am! And I have done this all by myself.

I have two reasons, perhaps three, for this blog. One is to keep grandparents, aunts, uncles, and all relatives and friends posted on our son's activities - and mine! Another perhaps equally important reason is to have a place where I can write down all of his new skills, fun and/or funny things he did that day, or even when we had a tough time. It's difficult to keep everyone posted on these things. But even more importantly, he's doing so many new things lately that I want to remember them, especially when I might be feeling blue or frustrated - I want to be able to look back and see just how much progress he's making.

The last reason: to share my reactions, thoughts & feelings, joys and grief, struggles and triumphs. Raising a son with autism is the hardest thing I have ever, ever had to do and it will also be the longest. But it has also been filled with joy - over the big and small strides that he has made.

So this is the first posting. I'm sure I'll add pictures and have fun with the layout of this thing. Welcome.