My daughter Madeline has Down syndrome, and I’ll admit I knew almost nothing about it when we first found out. For the vast majority of my life it didn’t affect me so I didn’t bother to get information on it. Instead I lived in a sort of dream world where I thought that since it hadn’t affected me then it wasn’t going to affect me. So when she was born I had a lot of catching up to do. I still have a lot of catching up to do.
But I’ve found out several practical things about having a child with Down syndrome (DS) that the books don’t talk about, either because they don’t know, or because there is really no way to make you understand if you don’t have a child with DS. Here are a few…
- The simple things are the most important.
- Get used to fighting battles with ignorant people.
- There is a community for support.
- Every single individual with DS is different.
- DS doesn’t define Madeline.
- Daily routine is a must.
- There are many programs, grants, and monies for those with DS.
- Sometimes it’s okay to sit in a room and cry.
- Being informed is 2/3rds of the battle.
- There’s a thin line between ordinary and extraordinary.
Fighting with the educational system to get inclusion for Madeline has probably been the biggest battle we’ve faced so far, and that we continue to face even now. She’s in first grade, and she has an amazing teacher and support staff, but it’s taken a lot of effort on our part to make sure everything was in place and is being enforced so that Madeline can truly be included with her typical peers. I hate that word — typical — by the way, because it implies that Madeline is “other,” that being typical is the right way to be. It’s just one way of being.
When she first started school we had already gone through tutoring for speech, and had received monetary support for other supplements to make the transition to school that much easier. And she spent three years in a pre-school program at UCP (United Cerebral Palsy) to assist in her social skills as well as to help her with routine. Those years were dynamic, and we noticed a lot of progress she made in that system, where she was in class with typical peers as well as those with disabilities. That was true inclusion, and we hated to leave after those three years were up, not just because of the time spent there but because of the unknown that awaited us on the other side.
Enrolling Madeline in a typical elementary school was a bear, to say the least. From the very first CSE meeting, where the principal was off-putting, comparing the school to a car dealership and us to consumers looking to purchase what he was selling. It was a stressful time, not just because of that meeting, but because of what it portended — that our child was welcome in the school, but that the school was only going to be able to provide so much for her.
We requested a 1 to 1 aide, and they gave her a shared aide, saying that it was more feasible that way. More feasible for them, of course, but we gave ground on that one, preferring not to make too many waves and waiting to see if the shared aide would indeed work. It did not, and they caved only a month into the year, getting 1 to 1 aides for both children who had DS in that one kindergarten classroom. We were vindicated, but we did not gloat. Instead, we settled in for what we realized even then would be a series of challenges to get our child through elementary school and beyond.
Because there’s a thin line between ordinary and extraordinary, and our child is the latter. We just need to keep making sure others can see that as well. So we fight, and we celebrate each small victory along the way to where we want to be, and where we want her to be.