Challenges in Arranging Childcare

I planned to go back to work after the birth of my first child, Adam, but finding daycare was a nightmare. Places would advertise availability, but once they found out what his needs were, they would say, “Oh, we can’t take him. We don’t have any more room.” It was obvious that they didn’t want to deal with the financial or insurance issues. I called the local childcare consortiums to see what was available, but most people seemed to think, “Oh my God, this kid is going to bleed to death the minute you walk out the door.” I had a lot of nontakers.

One time I hired someone to live in the house to watch Adam. That was a disaster. Not because she didn’t care for Adam, but because she kind of freaked out about other things. I would come home and the fire department would be there, or the state police would be there because she thought someone was in the house.

Overall, however, I have had the greatest luck. One day, I answered a newspaper ad for someone who was offering day care in her home. It turned out her husband had factor IX deficiency. We ended up taking Adam to her for several years. She was wonderful. Things always seemed to work out that way.

When we moved to Boston, which had a larger population of people with bleeding disorders than where we lived in New York, it was easier to find childcare for Adam…but that’s not to say there weren’t issues. For instance, they didn’t want him to come when he was using crutches because it was more difficult for them to care for him. They also wanted to charge more. But we managed to survive.

We went back to New York after my second child, Taylor, was born. I had a girlfriend who had decided to watch kids in her home and we both happened to live in Syracuse. That worked out very well and she watched them for several years.

When Zachary was born, I took a year off and then went back to school. At about that time, I became a single parent, but I’d developed relationships with people in the community. I knew a woman who worked part-time whose daughter was in the same preschool class as Zachary. I scheduled my classes when she didn’t have to work and I took them to preschool on the days that she went to work.

When I interviewed potential daycare providers, I NEVER said Adam or Zachary had “a special condition.” I said, “Listen, they’re normal kids. They’re going to play like any other kid and I WANT you to let them play that way. Yes, their blood doesn’t clot properly, and that can be an issue at times. But most of the time it’s going to be a nosebleed or a mouth bleed. They aren’t going to die in two minutes. Don’t panic, apply ice, call me, and we’ll go from there.”

It also helps to know the person taking care of your child. I already had relationships with most of the people who watched the kids. When I did have to leave the kids with people I didn’t know, I would bring them over to play ahead of time. I would stay during the play date so that everyone could get used to each other and the kids could get comfortable. If you don’t know the person who is watching your kids beforehand, it’s very important that you set up a couple of play dates to observe, talk, and just check things out before trusting your child to his or her care.

The key is having open communication and ensuring the childcare provider can get a hold of you within a matter of minutes. I always told them, “No question is too silly. You can call me 10 times a day.” I always had pagers and now I have cell phones, so I’m easy to reach. I give the providers a list of numbers where I can be reached, how to reach the kids’ dad if they can’t get a hold of me, the treatment center numbers, steps to take if there is an incident, and if all else fails, to call 911 or take him to the hospital. Fortunately, most of that information was never needed. As I look back over the past 17 years and think of how many times my kids have been hurt, bleeding-wise, when they were with a sitter, I can’t think of one. I have had the greatest luck.