Monday, October 8, 2012

Care and Keeping

One of the things I worried most about when I was still getting used to Pacey's diagnosis of Down syndrome was how many things I thought I'd have to do differently. We were offered respite care at various times (in this context it meant a trained caregiver to come and give us some time "off") so I sort of assumed that it was going to take something beyond a typical caregiver to watch my child.

I had an experience that seemed to corroborate this assumption. I'd had Baby Boy Harris on the waiting list at Fancy Pants Daycare for months by the time he was born (we joked that in SoCal you better put your kid on the waiting list before you start trying to conceive). When he was a couple of months old and I was trying to figure out how and where we were going to transition him into daycare, I called the director of Fancy Pants Daycare. I don't recall all the details of the conversation, but she made it quite clear - in ways that would prevent them from being sued - that they weren't prepared to have him at their facility. I can't even describe how that felt...a mixture of humiliation and disappointment. I also felt really alone at that point, like I was going to spend my life trying to figure out where he would be accepted.

As it turned out, we were on a waiting list at another daycare that was more than happy to have Pacey. In fact, when he turned 18 months we found out that they were actually a contracted provider of early intervention services for the state of California and he was able to have therapies provide on site. The speech therapist there actually requested permission to work with him more than he was technically eligible for. She had students working with her and Pacey was so great to work with that they all wanted to spend more time with him. It ended up being the perfect place for him but I never really got over the sting of that first exclusion.

Anyway, I was thinking about all this today because I went to the gym this afternoon with the kids. I checked the kids in, reminded them both where the bathroom was, chatted to the woman in charge and left. No need for discussion of Ds, no additional instructions required, just a kid hanging out while his mom attempted to stave off the effects of a metabolism slowing down.

I thought about it earlier this week too, chatting to a friend about finding and hiring babysitters. She has a littler guy with Ds, and she was asking me whether I say up front that Pacey has Down syndrome or not. I don't, actually. I posted a job listing this last time just indicating that I had two children and their ages. I always request to interview a new babysitter before I leave them with the kids and I make sure that they get to meet Pacey at that time. I usually reference the fact that he has Ds and ask whether the sitter has any experience with it. I like to point out that he doesn't require any different care than other kids and I think it's a great way to show people that don't have experience that he's not all that different. As I told my friend, if someone is going to be uncomfortable with it, firstly they probably wouldn't ever accept a sitting job, but more importantly you probably don't want to hire them anyway. I've never had a babysitter meet Pacey and then decide not to sit for us.

There is plenty that is still challenging about having a kid with special needs, but sometimes it's nice to take a moment and acknowledge the things that AREN'T as hard/different as I feared they might be.


Michelle said...

I'm sorry you had to go through that first sting of exclusion when he was a baby; but glad to know you haven't had any problems since! I've always wondered, if there weren't any extenuating circumstances, what a day care felt like they couldn't provide for a baby with Ds. They don't require anything extra!

Elsha said...

The first time we left Daniel with a sitter she asked if there was anything special she needed to know and I said no and she said, "I just don't know much about Down syndrome." And I laughed because- he was a 5 month old! They don't do anything! I reassured her that she would be fine and that he was probably easier than other babies she'd watched.

I've had other people ask if he's harder and they always seem surprised when I say he's definitely been my easiest baby.