When you have a kid with special needs, child care can be tough to come by.
Last summer, I was talking to another working mom about our child care plans. I told her that Norrin has autism and that he attends school for six weeks in the summer.
"Oh, you're so lucky that you don't have to worry about childcare," she said. And then she went on to vent about finding a camp for her typical-developing kid.
It took every ounce of willpower to not give her the side-eye. I'm grateful that my son attends a year-long school program, but I wouldn't exactly call it a perk. And I don't feel lucky that my kid's disability requires him to go to school year-round.
I first put Norrin on a bus to a special education program when he was 2 years old. He was still in diapers, he had no language development yet, and I handed him off to a stranger. And in those first years, we had a trusted babysitter my son could be dropped off with. Between my mother and my husband, they'd pick him up so that he could still receive occupational and speech therapy at home.
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What I didn't share with this mom is how stressful it is for me to find appropriate and affordable child care, especially during the last three to four weeks of the summer, which are the toughest. My husband and I each took a week off work to stay home with our son this past summer. And one week, I sent Norrin to a day camp for kids with autism. The camp was four days a week, from 9 a.m. to 3 p.m. Since it was in Manhattan, I dropped Norrin off and walked to my office. I'd take my lunch at 2:30 to walk back to him, and then bring him back to my office so that I could work a few more hours. The camp cost $1,100 for four days.
When you add "special needs" to anything child related, the cost quadruples. It's the reason why so many moms I know raising kids with special needs have quit their jobs. And while being a stay-at-home mom is not for me, I'd be lying if I said I never thought about it because the lack of child care makes it hard.
I'm a secretary and a freelance writer and my husband is a court officer. We make a decent living. But $1,100 for four days isn't something we could easily afford. It was out of the question—and our budget—to send him to camp for the full three weeks.
In the State of the Union address earlier this year, President Obama declared that "child care is a must-have." And as a working mom, I agree because child care is a challenge for so many families. Even more so when a child has special needs.
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When you add "special needs" to anything child related, the cost quadruples. It's the reason why so many moms I know raising kids with special needs have quit their jobs. And while being a stay-at-home mom is not for me, I'd be lying if I said I never thought about it because the lack of child care makes it hard.
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Now that Norrin is 9, after-school care is a major concern. And he still requires home-based therapy (which I pay for out of pocket) but his therapists are not babysitters, so they are not able be in the home alone with him. So, I pay a babysitter a few days a week to pick him up from the bus and she hangs out while Norrin works with his therapist. The other days, my parents come up to help.
I have tried to do the typical kid after school program thing—twice, actually. I had this idea that it would be good for Norrin to be social with typical kids. The first program lasted one afternoon, and the next day, the director returned my check. The second program lasted a month. Both programs knew upfront that Norrin has autism. I was completely honest with them. And I also had one of his therapists there with him the entire time.
It came down to this: Neither program wanted my son there, even when accompanied by a therapist that I was paying for privately. In my neighborhood, there are absolutely no options for daycare or after-school child care for children with special needs. As autism rates continue to increase, the need for appropriate programs will also increase.
In a sense, I have been lucky. My husband and I have jobs that allow us some flexibility. We have always been able to scrape by with money to make it work. We have the help of my parents. But I can't always rely on luck. And as my parents get older, I can't always depend on them. I need something I can depend on. All special needs parents do.
