Last Friday I had the honor of being interviewed by Kerry Magro of Autism Speaks for his cable television show, “Different is Beautiful.” It was wonderful meeting Kerry, whom I’ve long admired, and I truly enjoyed the opportunity to talk about my writing and my life with the boys.
I love talking about them every chance I get.
Kerry asked me a variety of questions that day, ranging from how I got started with blogging to what were some of my initial reactions when my eldest son was diagnosed with autism. I enjoyed speaking about both topics, but it was the latter query that had me thinking as I navigated my way out of Jersey City and tried desperately not to end up in Manhattan.
Yes, I have a GPS. Yes, my home is in the opposite direction of New York City. No, none of that makes a difference.
After I found my way cheerfully back to the Jersey Turnpike South I allowed myself to think back over the interview, and that last question stayed with me. Frankly, by the time Justin was diagnosed I’d noticed his differences for almost a year- putting a label to them was almost a relief.
Eleven years ago nobody was diagnosing children under eighteen months- the fact that Justin got the autism label at seventeen months was an anomaly. Today however, some children are given a suspected diagnosis as early as six months; many parents won’t have a year to ease into their suspicions that their children are developing differently than neurotypical children. For many parents this label will come as a shock- perhaps their first reactions will be denial, anger, fear, and finally wondering if somehow they caused autism their child.
At the very least, most parents will probably feel overwhelmed.
There are things parents of newly diagnosed children can do in the first weeks and months that can truly help those overwhelmed feelings. Here are my top ten that I did eleven years ago, and recommend to all of you:
1) Ask for help. It may take you a while to figure out what you need, but ask for it. People will generally want to do something for your family but won’t know exactly what to do.
2) Make friends with other parents of autistic children. They will turn out to be wonderful resources, and will also provide invaluable support.
3) Find an autism support group. It may take a while to find the right fit; don’t get discouraged, keep trying!
4) If you are married or in a relationship, make time for it. You will need to support each other a lot in the first few months after a diagnosis. Make sure you get out and take some childless time for yourselves.
5) If you know you’re going to need to see various professionals for your child, make the appointments immediately. Sometimes it takes six months to get into an office. Further diagnoses may help your child get treatments or therapy.
6) If it’s too hard to tell people ask a friend or relative to share your child’s autism diagnosis with others. I did this with our second child on the spectrum, and it made life a lot easier.
7) Check out the Autism Speaks website and take a look at their tool kits. There’s a lot of valuable information there!
8) You will probably feel overwhelmed. Make lists of what you need to do and perhaps purchase a separate calendar for appointments, due dates on paperwork, etc. This will help you feel more organized.
9) If you’re ready to talk about your child but you don’t want opinions, tell people you just want them to listen. People mean well, but unless they have an autistic child they haven’t walked in your shoes. Telling them up front that you just need to vent can help.
10) Take care of yourself. Keep doctor appointments you’ve made for yourself, and carve out alone time if at all possible. You will need a break once in a while!
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