Tuesday, April 17, 2012

Flying by the seat of our pants

Whoa! Lookee here: A blog! With my name on it! Imagine that!

For the first time in, well, fifteen months, I'm staring at my little expanse of blogspace here and thinking of all the things that I could say to fill it up. I've got quite a story to tell. It's epic. Profound. Life-changing. You might not even believe it. There are times when I'm in a state of sheer disbelief, myself.

So that's what I'm going to do: tell the story. At least the parts of it that I know. You see, it's still unfolding and every day things are both a little more fantastic and a little more clear. But it has not yet ceased to be amazing. And I want to tell it because I think maybe what is happening inside the walls of our little green house might be useful in some way to other people.

A year ago, I quit the blog. It wasn't anything I'd thought about. I didn't sign off in any thoughtful or dramatic way. I just quit writing. I suppose I expected that I would post again one day but for one reason or another I just didn't.

Writing about our journey with autism had always helped me process the experience, to sort out the complicated mix of thoughts and emotions. But in that year prior to my last entry, I was having trouble figuring out how to write about something. Twice that year, I had been gently told by people whom I trusted (our developmental pediatrician and the school psychologist) that I should start facing the fact that Oliver was intellectually disabled and that -- I'm paraphrasing here -- I shouldn't expect very much from him. You see, at the age of eight Oliver was still only able to communicate at the most basic level. And he was never able to demonstrate much intellectual ability through any kind of testing. I went through a bit of a crisis at the time. It wasn't that I would love Oliver any less if he had a greatly diminished capacity to learn, it was more that I just didn't believe it -- despite the fact that there was so much that Oliver could not or would not do. But for the first time in the five years since we learned of his autism, I started questioning what I believed to be true about Oliver: was all my faith, hope and optimism built on the blind love of a mother? It was a rough couple of months for me. I was a complete fool.

Somewhere along the way, mid-year perhaps, I came to my senses and just decided to let it all go. The tests, evaluations and learned opinions of professionals had never really been of much use to us. In the end, we just have to go with the boy in front of us and help him achieve to the best of his potential. Even if they are right, I decided, it doesn't change a thing about how we think about today and tomorrow.

I'm not even sure how to continue this story. Because, you see, one thing almost certainly doesn't lead to the next in this amazing tale. Telling you of our homeschooling efforts, for example -- the weeks and weeks of labored progress with the Bob Books series and my excitement over Oliver's slow but growing phonemic awareness  -- would only be a red herring. So instead, I'll just tell you the story of the day at the end of March 2012 when I put the pen in Oliver's hand. I needed to do something different that day. I was bored with all the things we had been doing and thought we might work on copying. Oliver was pretty good at tracing shapes and letters, but he has never been able to draw one on his own. If you put a writing instrument in his hand and asked him to draw a square, he might start off accurately but then inevitably end in random scribbling, not able to finish the shape.

But on this day, something slightly different happened. I wrote out 6 or 7 letters of the alphabet and told him we would practice writing them. I left my hand cupped around his to help him remember to rest his hand on the paper as he wrote. And do you know? The boy seemed to write beautifully and with great ease. I wrote out the numbers one through ten and he did it again. I wrote out: "My name is Oliver," and he did it again. I was buoyed and excited but I didn't want to push it. But each day I challenged him a little bit more.

After two days, I realized he didn't need to copy my sentences. If I kept my hand very lightly cupped over his, he could write whatever I asked him to. Soon, I was writing out questions, helping him read them aloud, and growing more and more astonished that he could answer my questions in writing with perfect spelling, perfect grammar. Not long after that, I realized that Oliver could read much, much more than he could say. It was a Saturday morning when we had the exchange pictured below and our lives have not been quite the same since.


I'm not sure where all this is going. It feels pretty remarkable. Three weeks ago I wasn't even sure if Oliver knew his last name. Two days ago he read a book about dinosaurs and explained to me, in writing, what the word extinct means.

The funny thing is, as I reflect on it tonight, our life hasn't really changed all that much. Suddenly we know that Oliver knows a good deal more than we thought he did. Each day we're astounded by what he is able to communicate through writing. It feels pretty good to have my belief in Oliver finally validated in a way that the rest of the word values even though I wish I could say that I don't give a shit. But we still feel like we're flying by the seat of our pants with this little guy.

Lucky for us, he sort of seems like he knows what he's doing and is very tolerant of his befuddled parents.

15 comments:

kristen spina said...

I saw hints of this on FB, and was so happy to read the details here. There doesn't seem to be anything I can say except, Holy Wow and Holy Wow!! What a wonderful thing, the beauty of love, a small boy with a clear heart and an amazing family. My own heart is overjoyed for you. I hope you'll keep us posted. Sending lots of love and hugs and smiles your way today.

Christine said...

Thanks Kristen! It feels good to be back!! And as for Oliver? It's all so stunning. I've pinched myself black and blue!!

Lisa said...

I clicked through via MOM-NOS...and all I can say is: Oh my....that gave me chills. How absolutely thrilling for you all!! Keep on keeping on!

Kerry said...

My Emma is still in that before phase, and sometimes it gets hard to keep hoping for the after (while still accepting her absolutely as she is). I needed this ray of hope, and I am so happy for you, and for Oliver.

deborah said...

So Awesome! Came to your blog thru route of another one. Glad I followed the link. So inspirational. This brought me to tears, happy tears. :) So happy for you all right now.

Brenda said...

I love this for you. I love that you ignored the predictions and limitations. I love that your child led you to understand. ((So good to hear all of this from you.))

MKosmicki said...

I simply want to reach through the "inter-web" and give you a giant hug! I have these moments with my son too. It never ceases to amaze me.

:-) Amazing!

Darla Hendrix said...

My son David is 27 years old and has autism spectrum disorder that is classified as severe. He was diagnosed in 1987 when he was 3 years old. He was not speaking at the time and had several severe behavioral episodes a day. The doctor who diagnosed him said he would most likely never speak, dress himself, feed himself or even be potty trained. I was pregnant at the time and his recommendation was that we put David in a residential facility "before we get too attached," and "where he could get the help he needs." He told us to focus on the child that would soon arrive. After listening to his predictions we informed him that David could feed and dress himself and he had been potty trained for almost 2 years. David has continued to progress beyond any expectations. His teacher was surprised to know he could do complex math in the 4th grade. They had been teaching him to use a calculator and didn't get it to him fast enough one day so he did the work on his own. She called me to report his amazing skill. I informed her that David had been doing math at home for years. I didn't know he was using a calculator at school. I assumed the work he brought home had been done independently. David was assessed a few years back and his expressive communication is still between a 3 to 5 year old level and his behaviors are still challenging but he continues to progress and I'm happy to say he continues to be happy living at home with his mom and dad. Never limit your expectation because there is no limit to the ability of a child or an adult with autism. :)

Sierra said...

I had a very similar moment with my son, when he was 3 and completely unable to speak. It turns out that what he had- the form of autism that he had- is called Hyperlexia. He was never formally diagnosed, but having that word meant that I could find people who had kids like mine and who could help me. The ideas that I got from other parents were priceless. I say that he "had" autism because he is fully recovered now, but he still has his incredible ability to read, write and spell. Best wishes to you and Oliver <3

anomalink said...

Way cool. In our family there are two, our eight-year-old star kid and his 28 year-old non-verbal cousin. All stories are different, and connections make the web stronger. Thanks for the post.

KAL said...

Hello old friend! So nice to see you back blogging. Still so thrilled and amazed and in awe of your awesome boy. xo

Maddy said...

I couldn't be more thrilled. Way back when......I would often think -one day I'm going to ask them why they did/didn't do this or that - you just never know what's round the corner.

Sarah said...

I have been following your blog for years, silently, and was very excited to see you'd returned as I was wondering how Oliver was doing all these months.

I think it's obvious that Oliver is an amazing, bright little boy despite his diagnosis, and I've come to care for him through all your posts -- but I have to ask this, because of what's happened with other autistic children... are you still cupping/holding his hand when he writes, or is he writing independently? If you are still cupping it, do you think you can transition him to writing independently? I just worry that not all these words may be coming from him as facilitated communication can have an effect similar to a Ouija board, where the facilitator unconsciously effects the facilitated's movements to produce words that may not be genuine. I truly hope this is not the case, but I felt compelled to let you know, because I care about Oliver and your family (as far as I've seen them in your posts.) Perhaps you can have a different person cup his hand for support and see if the sentences he produces are still characteristic of what he's been saying recently.

mjsuperfan said...

Oh, my goodness!!! I had stopped looking at your blog, and then just now my sister casually started talking about Oliver and what he can do. I am so glad she mentioned it. I have so much catching up to do.

Stephanie Hack said...

I'm crying so hard I can barely write. I want this so badly for my son. I want him to talk to me or write to me one day. He's such a beautiful, loving, sweet boy and I know he's in there. I'll never give up. Your story gives me so much hope. Thank you, thank you, thank you.