Greetings Autism File readers! My name is Erik Nanstiel and I am a single parent of a teenage girl with autism, residing in Chicago’s northwest suburbs. I have been raising my daughter Miranda, on my own, for the last four years. Recently, I’ve been writing articles on various topics for Autism File’s print edition, on topics such as dating and assistive technology, and I’m now branching out to write about my experiences as a single “autism parent” on this site.
For my first topic, I’d like to talk about some of my challenges regarding childcare. As you can imagine, having a child with severe autism requires one to arrange round-the-clock supervision. There is NEVER a time when it’s safe to leave a child like Miranda alone. If you do, as so many of you can attest, you run the risk of allowing your child to endanger him/herself…either through wandering off or any variety of self-injurious behaviors. These children need constant attention
Since the topic of childcare is quite large, I’ll break it up. In my experience, the methods and people I employ in this perpetual struggle vary by season; primarily the school year and summer break, punctuated by smaller breaks and national and religious holidays. Each requires its own solution.
The School Year
As a single parent, I LOVE the school year. Miranda is picked up by the bus each morning, and dropped off each afternoon. That’s seven hours of taxpayer-funded childcare. But here’s the rub: I’m a single parent with a full-time job. My work hours and the school day are not exactly congruent. Miranda’s school day ends, typically, by 2:15 whereas my workday is supposed to end at 4:30. How do I cover that gap?
In prior years, before Miranda entered junior high, our local park district offered kindergarten-through-sixth graders “before and after” care programs at the schools’ locations. And these programs were offered to all kids, neurotypical and special-needs alike. A local Special Recreation Association (NWSRA.org) even provided one-on-one aides free of charge to special needs kids. All I had to do was pay the fee for the program, and scholarships were available through the park district.
Today, however, Miranda is in the 8th grade. There are NO after care programs. I assume that the park district, either from a lack of funding, or oversight, figures that a 13-year-old child can be a latchkey kid and wait for their parents to get home. Nobody but the parents remembered this rather large segment of special needs students. While I have come to learn that the local special recreation association is just now attempting to create after care programs for special needs kids at the schools, I have for the last two years fended for myself.
Aside from availing myself the help of family and friends, my daughter is eligible for Illinois’ “LIFE” program through the Medicaid waiver. Serviced through an agency (ours is Clearbrook), Miranda is provided in-home care workers. They come into the home and provide a blend of childcare and therapeutic services. What I’ve managed is to hire staff to retrieve Miranda from her bus and tend to her until I’m able to get home from work. This allows me a full-time job—and a roof over our heads. Literally. There are bumps along the way, such as when we have staff turnover at the house, but for the most part, the LIFE Program has been a Life SAVER.
Holidays and Winter & Spring Breaks: Facebook to the Rescue!
Federal and religious holidays, school administration breaks and the week-long breaks for winter and spring present their own problems. I haven’t enough vacation time at work to coordinate my days off with my daughter’s. And quite often, the allotted hours Miranda is given each month for the LIFE program are inadequate for five full days of childcare without shortchanging our needs later on. Not to mention that my regular staff workers may not be available on these breaks (they have kids too). This is where the judicious use of my “support network” comes into play.
I have a short list of family members and friends that I contact to help us out, such as my father, Miranda’s uncle, and a few close friends who volunteer from time to time. There are occasions, however, when my normal pool of help has dried up and I have to turn to another resource: FACEBOOK!
Having been a Facebook user since 2007, I’ve amassed a large network of “friends,” most whom are autism parents. As it happens, there are many in the Chicago area. When I’m desperate to maintain the status quo at work and not take time off, and my usual help is unavailable, my Facebook friends will sometimes see this entreaty on my timeline: “HELLLLLLP!” followed by the particulars of my request. I consider it my own Hail Mary pass—and it often works.
Several of my fellow autism parents have graciously offered their time to help with Miranda when I had no other recourse. To some, resorting to a public cry for help goes against one’s pride—but for me, a pragmatist, pride takes a backseat. You have to do what you have to do. But it’s not as random as it sounds. Those who offer their help are familiar with Miranda as they read my status updates and timeline postings, as I read theirs. And they know I will return the favor. So if I were to offer advice: don’t discount Facebook when asking for help. At least you have the potential to KNOW your babysitters before you’ve ever used them. Compare that to utilizing a website like Sittercity.com where you must carefully interview candidates. (Although I’m told that’s an excellent resource.)
The last “season” in childcare is the biggest one with which I contend: Summer Break. Naturally, nobody has 10 weeks of vacation time. Not even the French! Three words: Summer Day Camp. Fortunately, at least for those in the Chicago metropolitan area, there are options available for all school ages. As it was with the “before and after” care programs, our local park district offers summer camp choices for all kids up through the sixth grade. For junior high and high school, our only option, again, is through the special recreation association (NWSRA.org) that offers a weekly camp for the 10 weeks of summer. But it’s not cheap. It costs me $150 per week, and I still have to contend with a 9:00 a.m. start time and a 3:00 p.m. pick-up time. Since I start work at 8:30 a.m. and work past 3:00, I am forced to find help so I can work a normal shift.
This past summer, I was fortunate that my staff worker was able to adjust her schedule to come to my house early and deliver Miranda to camp by 9:00 a.m. But when she wasn’t available, I made my usual round of phone calls. I didn’t always find help, but I managed enough to keep my employer happy. It’s a continual process.
“Okay, Erik,” you’re thinking. “What’s the point and where’s the advice?” Rather than offering advice, my aim here is to paint a picture of what parents like me have to manage to provide for their children with autism. Perhaps you can relate to the steps I’ve taken, or have some other resources or methods you’ve used. You’re welcome to comment on your experiences below!
Image by Tanayia Koonce Photography