Copyright © 2009 Steve Hawley, All rights reserved.
One of the hard parts of being a parent with a child with disabilities is the intimate and thorough knowledge you get of milestones. Much of early intervention for us centered around looking ahead to milestones and figuring out how to back-chain small skills into reaching milestones. It starts will simple things like object tracking, reaching up to grab toys at center line. Then it moves onto rolling over back to front, lifting up the head, rolling over front to back, discovering hands and so on. They’re all simple, simple things and it’s so frustrating, so very frustrating and depressing when they don’t happen. And really, the worst part of all is the contrast with other children.
The year Alice was born, I was teaching and acting as Tech Director for a local school. The summer after she was born, I took her to the “new moms group” that met once a week. It was entertaining that in an area as liberal as the Pioneer Valley, I was the only dad. I brought Alice, complete with her portable oxygen tank, to meet with the moms. It was hard. The contrast between what Alice was doing and what the other babies was doing was stark. I tried to think positively (“None of these children have Down syndrome.” “None of these children had a stroke.” “The playfield is not the same.”). Tried. I can’t say that I succeeded.
Yet when she reached a milestone, it was incredible. I loved watching her lifting up her head for the first time. I made wooden blocks for her that would better fit her tiny hands and was thrilled to see her stacking them up. Then I would see babies that were crawling or walking and my heart would be broken again.
And this happens again and again and again. Sometimes, I know it’s my bias coming to the party. For example, I fear the day when Alice is actively shunned by her friends that I look for it when I see her with her peers. This is awful, I know, because I don’t want to project the bias onto her or her friends, so I sit back watch for the most part. We recently went to the local cruise night, where car collectors bring out their best for show. The kids grouped up with some other kids, including two older boys who knew Alice from school. They were into some heavy duty wrestling, but they lightened up when Alice was near and were very protective of her. They went as far chiding Stuart about tackling Alice because he might hurt her neck. It was like Alice had two older brothers looking out for her.
And the highs still happen. This past year, while waiting for Alice’s mom who was getting lunch in a cafeteria, I decided to do some reading drills. For grins, I wrote ‘mommy’ on a napkin and before I could ask her to name the letters, she pointed at it and read it. Huh-wha?! She had started sight reading. Wow! Tonight we were cajoling her brother into eating at least some of his dinner, counting down the target number of bites of food. Alice did the arithmetic. We know because she spoke the steps. Again, wow!
It can be so emotionally hard to be pulled in so many directions at once.