Saturday, July 19, 2008

"She's Always Going To Need You"

I met a wonderful doctor this past week.

His name was Dr. Doyle, and he runs the clinic for children with autism at CHEO. He is a developmental specialist, and the last doctor on our list of doctors to see to determine if Paige has autism.

Dr. Doyle is an older gentleman, soft-spoken, genuine, and so very sweet. The wing of the hospital that we met at is called the Children's Treatment Center -where children with physical and developmental delays go to receive therapies, evaluations, fittings for seating, diagnosis, etc.

There is an on-site school at OCTC - for kids up to grade three. Although many people strongly disagree with "special" schools, this school is special for all the right reasons. It was designed for children who are quite severely delayed; the classrooms are small in number, but big in size to allow for wheelchairs and adaptive equipment. The teachers and aides that work with the children are trained to meet their needs within the classroom. Doctors are available at all times, and often the children with greater medical needs see their doctors right in their classroom.

Each room has one-way mirrors so parents can stop by at any time of the day to see what their kids are doing. This is my 3rd or 4th visit to OCTC, and each time I visit, there are always parents there. Although, its sometimes hard to tell who is who, because there is such a great sense of family between parents and educators that they are on a first name basis, sometimes chatting about the previous weekend's adventures and such.

So, needless to say, I felt at home the moment we wheeled our way into the waiting area.

I was greeted by Dr. Doyle, not a nurse who took us to a waiting room, but by the doctor himself, who led us to a friendly room with toys and puzzles, and only a discreet bit of "doctor" stuff around.

I was prepared for the typical developmental checklist to be read to me - to answer all of the 500+ questions that I have answered before, with the vast majority of them being answered with a 'no, she doesn't do that" or "no, not yet" or something of that nature.

Instead, I was led into a conversation about Paige herself. A conversation in which I was able to tell funny stories about my little girl; in which I could brag about all the things she can do, and talk about the areas where she isn't progressing quickly.

He was genuinely interested in her as a person, giving me scenarios and asking me how I thought she would react in those scenarios.

After an hour or more, he told me all the things I already knew - that she was developmentally delayed past the point of what was typical for a child with T21; that she displayed many characteristics of a child on the autism spectrum; that my answers led him to believe she was a child with autism; and that his observation of her over the time we chatted pointed to several key factors that would lead him to diagnose her with autism.

He asked me if anything he was saying surprised me, and I said, "no, of course not, I would have been more surprised if I came in here and you told me she was NOT autistic."

And then he said something in the most amazing way. In a way that made my heart swell with joy, that made me want to burst out smiling, that made me want to pick her up, swing her around in a circle with both of our heads tipped back, laughing the whole time.

He said, "she is always going to need you."

Without a second's pause, I answered, "That's good, because we are always going to need her."


So, that's it? That's all a diagnosis of autism, or T21 for that matter, means?!?!?

That she's always going to need us? That's the worst of the worst? That's what we fear so much? Delivered the way he did, it seemed like such a wonderful gift.

Wow. Wow to all of those people who contemplate termination of their pregnancies. Wow to those of us who live in fear of what adulthood will bring for our kids. Wow to those of us who close our eyes in the dark of night, or in the privacy of a shower and wonder "what if" "what if" "what if." Wow to all those worries, sometimes so unfounded, and yet so profound that they take over our lives.

She's always going to need me.

She's always going to need me.

She's always going to need me.

Hardly a life's sentence.

Rather a life's blessing.


datri said...

My daughter Kayla is four and has Down syndrome. She was also diagnosed with autism about a year ago. The autism diagnosis certainly explains a lot, and helps figure out HOW to teach her things since she definitely does not learn like a child who has just Down syndrome.

Kele said...

What a lovely, lovely post. I have visited your blog before by learning from you on Nicole & T's blog. Your latest post is absolutley one of the most wonderflu ways to look at my life with my Presley. Thank you, thank you! Thank you very much for that amazing thought to go back to on a day in which I might allow myself to be down. 'She will always need me'. As a mother who adores her children, who loves her children and loves to be needed by her children, how very lucky that makes me.

Tara Marie said...

Betsy......I always needed my Mother in a sense, I still do. I go and visit her at her resting place often, just to talk.

I feel utterly blessed that Emma Sage will 'need' me, as I think I will 'need' her just as much.

I miss you....

Nicole said...

Oh Betsy I just love how you can bring the truth and the joy of life to the surface. Love you honey!

Robin said...

So beautifully said! Found your blog via Alltop by the way...

Chris said...

Thank you Betsy. The dual T21/autism diagnosis is one I fear, but after reading your post, tears are welling in my eyes. How wonderful it is to be needed.

I just hope I will be able to deliver for my son as powerfully and beautifully as you have for your daughter.

Mauzy said...

Beautiful, just beautiful.