Last week I took Owen in for his 5 year well child visit. Hard to believe it's been five years, but there we were! We have a great pediatrician. She doesn't specialize in children with Down syndrome or other special needs; we chose her at first because she was close to our home and we needed to see a doctor after Owen was born. Once we met her and saw how much she cared about us and her willingness to get information about Down syndrome, we knew we would stick with her. She is always prepared for our visits and knows Owen's medical history extremely well.
So why do I always feel such anxiety when we go to this appointment each year? It's because of a piece of paper. One little piece of paper on a clipboard with a pen........waiting to tell me what I already know. When Owen was an infant, I was so concerned with him gaining enough weight to have his heart surgery, so at first I didn't even get concerned about the developmental questionnaire. But after he recovered, every time I had to fill it out could reduce me to tears, typically in the exam room as I waited for the doctor to come in, but sometimes even in the waiting lobby area. It was hard to read what my child should be doing and knowing that he wasn't even close to meeting those goals. Sometimes it just made me hate Down syndrome, knowing that Owen was going to fall further behind and then fear would grip me wondering if he'd ever do any of the things on those lists.
But last week when the receptionist handed me the clipboard with the five year old checklist, I smiled and took it with me to the waiting lobby. Owen followed me and decided to sit at the little table they have for kids. I gave him the clipboard and the pen and told him to write some lines and practice his "O". He dutifully went to town with that piece of paper, scribbling all over it until I wasn't able to read it very well.
When his doctor came into the exam room, she looked at the paper, said to Owen "nice writing, buddy", and promptly tossed it in the trash. We talked about Owen's strengths, weaknesses, specialist appointments, school and private therapies. She checked him from head to toe and we discussed what vaccinations he needed for Kindergarten. She marveled at how well behaved he was (he was really, really good that afternoon!) and kept saying how amazing it was that 5 years had already passed.
At the very end, she pulled out the 3 year old developmental questionnaire and we breezed through it together. I was not emotional at all; in fact it was nice to know exactly what developmental age Owen technically is--it made me better understand where his head is in relation to things like writing and potty training. He's at the typical stage where kids are becoming more aware of and wanting to try to do those things, which made a lot of sense to me.
That silly piece of paper used to hold so much power over me. Maybe that doesn't make much sense to most people, as it's just there to get a sense of where a kid is at. But for me it was a daunting list of things that weren't happening and I couldn't always see a future where they would happen for Owen. But things change and time helps. That piece of paper has no power over me any more. I'm holding all the power now and letting Owen show me that he is just fine and progressing on his own timetable.