I’ve written various drafts of this post for months. And never hit “publish.” But when I heard today’s news that the CDC has revised its estimate of the prevalence of autism in the U.S. to a shocking 1 in 88 kids (and 1 in 48 boys), I felt I should speak up.
I can’t tell you in what ways autism (or autistic-like symptoms) has affected my family. But I have told you before at this blog (and on Twitter) that I have two children with special needs, and that I am also a single parent. In my spare time (ha!) I am a special needs advocate and serve on the board of a NYC non-profit serving people with developmental disabilities.
For many reasons, I can’t go into specifics about my own children’s special needs. You do know that my son (who is now age 5 1/2) has apraxia and sensory problems. He attends a wonderful school for children with learning disabilities, and is making good progress.
My daughter’s situation is more complicated, and her symptoms and diagnoses are more stigmatized than my son’s. She is now eight-and-a-half and for privacy reasons, I don’t divulge much information about her on this blog. There are also legal reasons for this, and if you’ve gone through a divorce you might imagine what they are. It is hard not to be able to share and seek the support of others. I can tell you this about my daughter–she is beautiful, bright, opinionated, funny, and destined for great things. I can also tell you that she suffers. A lot. And so does our family, as a result.
There is so much I wish could say about my experience of raising two children with special needs, particularly against the backdrop of a tough divorce. If I had a dime for every person who has told me, “Joanna, you must write a book….”, well, I’d be very rich. Sometimes it is strange to me that the reason I am known (mostly) in the blogging community is because I write this shopping blog. Because shopping (and blogging) are actually a very small part of my life, and any work I have done in any career (blogging and others) has simply paled in comparison to the most staggering, overwhelming, challenging, and unexpected role of my life–raising two children with significant special needs.
Back to the CDC’s news today. Soon after I heard the news, I spoke to a friend of mine whose child is significantly impaired by autism. “We knew it, right?” she said. She and I, and the legions of other women in this crazy “sisterhood” of parents of special needs children, just knew that the old figure of 1 in 110 kids having autism was just too rosy. We know because we “see” it everywhere. We are trained–our eyes, ears, and gut feelings can tell us when a child–not just ours–is “off.” Frankly, we even think that the newly revised number of 1 in 88 (and 1 in 48 boys) may not last long.
I thought about all of this this morning as the news kept getting re-tweeted on Twitter, and as I spent a brisk but beautiful spring morning with my 5-year-old son who is off from school this week. We visited one of our favorite NYC haunts, this little gem called Greenacre Park. We tossed pennies into the waterfall and made wishes. I took some pictures (sorry, I disobeyed a sign).
Then we stopped for his “lunch”–a soft pretzel. I’ve mentioned before he is an exceptionally picky eater. He is going to start feeding therapy soon. Another story for another time. There are so many other stories for other times…and, yes, I could fill a book. Actually, a series of books.
My son doesn’t have autism (as far as I know), but he has significant special needs, and more than several people have asked me if he is autistic. We get looks wherever we go…when they hear the odd cadence in his voice (caused by apraxia), stare when he melts down (because a sound is too loud or a smell is too strong for him). But this morning he was happily eating his pretzel, and at 11am a nearby church sounded some beautiful bells.
“Hey! I hear that noise!” he laughed. I laughed too. For a moment, I thought, “Well, who cares?” More and more children are being diagnosed with special needs. And life doesn’t end…it goes on, for all of us. We take these moments that we can with our children–special needs or not–and make the best of them. We hear bells and music and we laugh.
Then about a minute later, my son burst into tears, and covered his ears, and cried, “The bells are too loud.” Back home we went. Moment over.
I have enough little anecdotes like these every day to fill an entire blog–several, actually. Some moments are mundane, some are extremely poignant. Like when a pediatrician told me my child may not walk, or a speech therapist told me my other child may not speak. Like when a doctor told me, “I don’t know what else to do for her.” Like when people have made fun of both of my children. Like when I received a devastating diagnosis about my child, and two moments later had to be in court for my divorce. Most of all, the moments when one of my children has cried to me, “Help me get better.”
But, my hands are tied from writing more about those moments. Instead I write a shopping blog (don’t get me wrong. I love writing MyMomShops and it has kept me sane for the past 5 years).
I’ll admit I get jealous or even angry when I read other blogs where a mom complains that she is a “single parent” for a week while her husband travels on business, or that her child is “difficult” because he or she wakes up at (gasp!) 6:30am, or that she has a child who is “occasionally” moody.
At the same time, I am extremely lucky that I was raised to be an optimistic, grateful person. I am eternally looking at the glass as “half-full.” I am blessed with loving friends and family that help me with my children in every possible way, including getting them the help and therapies they need. My children are physically healthy. And, four and a half years after my marriage ended, I am in a wonderful relationship now with a man who is 100% supportive both of me and of my children exactly the way we are.
Maybe some of you will pay very little attention to today’s “1 in 88″ news. That’s OK. I just want to ask you this. If your children are typically developing and have no developmental disorders, please take a moment after you read this post to be grateful. Think of how tough “regular” parenting is for you. Then think about how much harder it is for those of us who parent 1 or more children with developmental disabilities, and/or do it on our own without a spouse. Please think before you judge children on the street who seem out of control, poorly behaved, or spoiled. Think about what those children–and their parents–might be going through.
Unfortunately, as today’s news indicates, parenting is about to get tougher and tougher for many of us.
Thanks for reading this, and I welcome your thoughts and comments.