For Laurie and Ellen
I read many child rearing books when I was pregnant. Being the eldest of six, I knew what to expect about diapers and feedings and teething but was worried I wouldn’t be the Perfect Mother I dreamed about being. After Our Kiddo was diagnosed with autism and all hope of perfection was gone, there were many things I felt no one else could possibly be experiencing. I was ashamed and did not know where to look to ask questions. There are still no parenting books for children with autism, at least, not the kind I wish there had been when Kiddo was young.
What I wanted was a Dr. Spock-like tome, to tell me what was normal for a child with autism, what was normal simply because he was 7 and the wisdom to know the difference. Dr. Spock told us to trust ourselves because we know more than we think but for a parent of a child with autism, or any disability, how could we know anything? Where is our Dr. Spock? I wanted to have an expert tell me to trust my gut and be creative but there wasn’t a book like that anywhere.
With normal mothering, the generation before helps the young mother, not just with advice, but with building her confidence and self-esteem and perhaps some babysitting. No mother or aunt or sister or cousin came before me parenting a child with autism. I felt alone and afraid and a failure. How could I explain Our Kiddo’s feces smearing to my sister-in-law when her kids were so perfect? How could I explain to my mother the reason I was so tired was because Kiddo hadn’t slept for days and was why I was taking a nap at 11 am? Whom could I ask about perseveration and flushing unripe pears down the toilet so often I knew where my plumber vacationed every year?
I dreamed of a scenario—a kitchen table–where parents of younger and older children and adults with autism gather. There is coffee and tea and a great big bowel of M&Ms. There is laughter and some tears, handholding and grateful thanks. And we all leave the table; if not happy, then comforted, knowing others have gone before us and others follow us and accept our help.
Some autism-related behaviors are so unspeakable, so unnerving, so disgusting and exhausting; no one talks about them at all. It wasn’t until Our Kiddo was school age and I met other parents, I felt a little better. Joining a parent support group, I begin to share. The sharing began in frustration to show others how “bad” I had it but I didn’t know other parents had the same problems. Once it came out, relief came and a sort of camaraderie—a very odd camaraderie—began.
Many of us are ashamed and disgusted and terribly hesitant to ask other parents for help with our children’s feces smearing but many have had this problem. You don’t know it until it is blurted out. Then the gates open and we babble, grateful to know we are not alone and begin to make jokes about poop with the only other people in the world who can understand and not be disgusted. I was stunned to know these weren’t unique problems. I see the same look and hear the same tone in young parents now when I first tell them they are not alone.
I knew a child with autism who had to see a train—or wait for it–when crossing a certain set of railroad tracks. It sounds “charming” but the mom and dad had to wait for a train to pass, each and every time they had to cross those tracks several blocks from their home, or be subjected to a screaming, flailing fit. They kept a train schedule for both the commuter train and the regular freight trains so they could avoid or not avoid those tracks. Going to the grocery store or park or school or grandma’s became a plotted out adventure and exhausting. And yet, this is “normal” for many families with kids with autism and would be nice to know something similar can be part of your child’s behavior. And it isn’t unique to your child or because you are a bad parent.
Rituals of any sort can be frustrating, such as the child who HAD to ask everyone to name greeting card companies instead of saying “hello”. What do you do? When does it become something maddening? Those parents would try to tell new people he would meet beforehand about this “quirk” so they could be prepared. They insisted he “allow” people he knew only one or two companies and be done with it–“you know Grandma knows more than two, Justin!”–and would give strangers a laminated list to read, which he allowed, when meeting the first time. It was through frustration and many difficult situations they came up with this solution, a good one in my opinion. It would be nice to have a boilerplate solution in place to start with but who could predict this?
Autism is a spectrum disorder and while those of us with lower functioning children or higher functioning children can complain about the other not understanding, but the truth is, sometimes there is overlap with quirks. Between all the other things, dealing with behaviors and odd quirks make our lives a challenge no matter the functioning level. We are tired because our children have not slept with any regularity for years—and I mean years. The higher functioning kids can fall back to feces smearing if there is a change in their lives or a frustration. The lower functioning kids can sleep well for years but illness or some little change can derail their sleep pattern. It takes a well thought out behavior plan to get them both back on track. And it is normal.
We—and our children—are more alike than we are different. We all know the frustrations of this disability and even share our solutions with each other. If we let them, other parents can be our biggest allies and our best friends. After all, we all belong to the same Sisterhood.
Every month is Autism Awareness Month at our house!