Editor’s note: I wrote this approximately 6 years ago. In preparing to re-post I was reading over, and parts of it stuck out to me. … “Repetition is the mark of my daughter’s play.” This is still a huge part of our day-to-day lives. And “I felt as though my concerns were dismissed.” That feeling accompanied me for years after these particular appointments. I have always felt that my daughter was just ..different.. enough to be looked at, but not enough to be treated or diagnosed. And if I don’t keep pushing, she will fall through the cracks of the system. Back to the story…
Finally getting somewhere.
I was able to get a pediatrician fairly quickly, though it was some distance away. On the day of our appointment, I lugged my 3 children, and all the documentation I had accumulated, and presented my daughter to the doctor. She read over the reports I had so far, and asked questions, while watching my daughter play in the examination room.
She didn’t know how to play.
I say play rather loosely. What she did in fact was not really “play”. She was 2, almost 3 at the time, and she has this small, orange teddy which she immediately attached to the minute she saw it and promptly christened it “Orange Teddy”. And she had it with her this day, and it was the object of her “play”. She laid it down on the examination table, and ran to the chair. Then she climbed up on the chair, sat there for a few minutes and then ran back to the table and her teddy. There she grabbed the teddy and ran to the door, back to the table and put the teddy down.
Rinse and repeat. She completed this cycle probably about 10 times in the 20 minutes the doctor and I were chatting, until the doctor looked at me, and asked very pointedly, “Does she do this frequently?”
Repetition is the mark of my daughter’s play.
Yes. Yes she does. She gets “stuck” in her stories, in her playing, in her routines. She repeats the same things over and over and over again, ad nauseum. Until we’re all sick of hearing her sing the same song, say the same sentence, play the same game.. Yes. Repetition is the mark of my daughter’s play.
I replied quite casually that yes, this is very frequent.. It was, in fact, so typical of her, that I hadn’t noticed there was something wrong with it. Children aren’t really supposed to get “stuck” in a cycle like that.
Something different about her
That seemed to alarm the doctor, and actually gave my reports credibility. I wasn’t an overly-concerned mother being hypersensitive. There was something different about this little girl’s development, and she had seen some evidence for herself.
The first thing she did was refer us to an audiologist for testing. Then she was going to refer us to a developmental pediatrician, someone who specialized in the early development of young children. She was pleased we were already referred to the social services agency, and told me to keep her informed.
A few weeks later, we got an appointment with the audiologist. After hooking my daughter up to all sorts of machines and testing her hearing, and watching the child dance around the room like nothing was wrong at all, the audiologist gave me her report. She looked at me, and said, “Well, as far as I can tell there’s nothing wrong with her hearing. However, what I can’t test is whether or not her brain is listening correctly to what her ears are telling her.” She gave me a book title to look up — What to Do when the Brain Can’t Hear.
I waited months for the referral to the Occupational Therapist. And heard nothing about speech therapy or any other services. But finally we were to see the OT. She did a bunch of play-testing with my daughter, and I watched curiously as she tested not only her ability to actually do things but also her ability to understand what she was doing. When it was all said and done, I asked for a copy of her final report and her notes.
The report noted deficiencies in her fine motor skills but advanced gross motor skills. It also noted difficulty in age-appropriate concepts, like drawing people, simple shapes, or stacking blocks. At 3 years of age, my daughter had the development of a 2 year old. And in some areas, a 1 yr old. It was a shocking declaration that there was something wrong with my child.
Complicated by paperwork issues
The final assessment we did that year was with the developmental pediatrician. This was a most frustrating experience. We were the last appointment of the day, except.. neither the centre nor the doctor had any record of our appointment. But he graciously saw us anyway, even though he had no referral paperwork, read none of her case file, knew nothing about us. I had learned by now to come prepared, so I gave him my copies to read over. Then he did similar activities with my daughter that the OT had done, and noted the same difficulties. He told me it looked like she had a 9-12 month gap in her abilities, possibly a bit more. And that I was doing the right thing in getting her assistance now. That in 5 -10 year from now, a 9 month gap wouldn’t be noticed.
Not that serious… right?
In one sense, it was immensely relieving to know that her developmental delays were not considered serious. In another sense, it was intensely frustrating to feel that after all this concern and worry and work, her delays were not serious. I almost felt that my concerns were dismissed. But.. there was still work to do, and I knew I was the best advocate for my child.