DISCLAIMER: This post is not for the faint-hearted; it’s about what it’s like to parent an autistic child. As extra incentive, it’s also close to 1500 words…
I was reading the other day, and the writer described parenting as “the most natural thing in the whole world.” Ugh. I think I threw up in my mouth when I read that. I can’t even believe how lucky some people are, and usually they don’t even realize it.
My oldest child has special needs. His official diagnosis was PDD-NOS; this diagnosis no longer exists as the DSM has decided it no longer exists, but he is a high-functioning autistic child. If you spent an hour with him, you would marvel at how bright he is. You would also notice repetitive speech, sensory issues, hand flapping, and numerous other autistic red flags.
Initially, we did not have him diagnosed because we did not want him to be “labeled”. We were (somewhat naively) hoping he would outgrow the need for services. Because we chose to not have him formally diagnosed until he was five and a half, we also chose not to tell people about our suspicions. I told two friends, and otherwise let it bottle up for years. It became increasingly difficult to talk about, and it remains difficult to write about. We told friends years later, after he was diagnosed at a reputable center nearby. (We are lucky to live in an area where there is easy access to a lot of resources.)
He started receiving services about five years ago, after recommendations from both his nursery school director and his doctor. He was behind on several gross-motor milestones. He was also eating out of the trashcan while the other children in his class were napping. Since he wasn’t napping at nursery school, he would often come home exhausted and would either crash on the floor or hurt himself. He was literally so tired he would fall over, which unfortunately included him falling on our cement driveway and stairs. (Ordinary activities are exhausting for children with low muscle tone.) I ended up switching him from a couple of full days to half days, which helped with both issues.
At the time he was also obsessed with eating, and throwing tantrums (usually over food) all day long. He was not interacting with any of the other children at nursery school, and would occasionally step on other children, without noticing their cries of pain. He would shriek instead of asking for help, was always exhausted, and would eat himself into a coma whenever possible. He would frequently eat more than me, even when I was pregnant with his brother! Left unchecked, he would literally just eat and eat.
Due to his constant hunger, his weight skyrocketed. At 2.5, he was already forty pounds. Initially, his doctor did not believe that I wasn’t giving him junk food. After witnessing him tantrum while I talked about healthy foods, his doctor finally believed me, and recommended portion control. I had been asking for recommendations on portion control for quite some time, and she kept telling me his appetite would “go down on its own.”
Since food is everywhere, we were not able to go out very much. It was embarrassing to be the mother constantly denying her child apples. I would usually add that we “just finished lunch ten minutes ago, and now it’s no longer time to eat. “ Even with that addendum, I would still get quite a few “bad mommy” stares. Who denies their kid apples? Aren’t parents supposed to feed their kids? Duh. What a horrible parent I must be. Meanwhile, he had supersonic hearing and was very tuned in to food. He could hear the breadbox opening from anywhere in our house, and would come running.
It was a very rough period. Besides the constant tantrums of that age group, we had a kid obsessed with food, who didn’t follow any instructions whatsoever, and who, when he wasn’t pestering for food, completely ignored us. He very rarely answered to his name, and would usually just sit with electronic toys, and press the same button over and over again. One day, out of sheer desperation and annoyance, I took out the screwdriver and removed every single battery from every single toy. Since the “broken” toys made him tantrum even more, I then boxed them all up, and drove them to my in-law’s house.
Without electronic toys to entertain him, he began to tantrum for food even more. Just to add to the nightmare, he was frequently allowed to eat himself sick at nursery school or at family gatherings. Grandparents are supposed to spoil their grandkids, right? And what’s better than spoiling your grandchild with food?
This meant constant dirty diapers… Since my son was also into fecal smearing*, it was not unusual to go get him from a nap and find shit everywhere, literally. (If you’re squeamish, I apologize for this detail. Unfortunately, this was a regular part of my life for about a year and a half.) Every time I put him down for a nap I needed to stay close just in case. Hearing the word “messy” meant drop everything and run. Showers were irregular at best, and could only be taken at night. Even just going to the kitchen to prep and cook food could easily lead to disaster. It kept me in a constant state of dread.
Since we already had another baby, the unpredictability was the worst part. I would be changing or feeding the baby, and “messy” would strike. I’d have to put the baby in a safe place, and listen to him screech while I wiped shit off of walls, door handles, toys, books, and my oldest son. It was time-consuming, gross… and incredibly disturbing. Worse, he didn’t seem bothered by it.
Because everyone told us we should, we focused on potty training. Aside from wiping pee off of my floor several times an hour these attempts were fruitless. Now besides having poop everywhere, we had pee everywhere too!
My in-laws fought me like the dickens on the notion that something might be amiss. I understood this in its’ own way. Who wouldn’t call their daughter-in-law crazy for saying their grandson had a problem? It didn’t make things any easier though; it was hard enough to admit we needed help.
By the time we had our son evaluated, he was behind by eighteen months in several areas, and ahead by 18 months in a few other areas. Of course, my in-laws were all over that. Since I don’t relish irritating my husband’s parents, I let them bask in their joy. My son was and continues to be very ahead in reading and math. He is academically bright, but struggles massively in almost all other areas.
Eventually, besides starting OT, PT, and speech, we found an awesome social worker. (Yes, raising special needs children is a veritable alphabet soup.) She made us our own potty training book. And the potty training book explained not only potty training, but that big boys shouldn’t put their hands in their diaper. It was a wonderful book, but he continued to do it regardless of our wonderful book. When he finally stopped doing this, it was largely of his own accord.
That Halloween, he told me he wanted to be a “big boy” for Halloween. He had never had any interest in being a big boy before, and though almost four still had almost no bladder control. (Of course, that was just one concern on a very long list.) The week my husband was on his annual hunting trip was a nightmare. With only one parent in the house, he had a lot more alone time and we had almost one incident a day that week. A lot of times I would think we were in the safe zone because he’d already gone once that day, but lo and behold… Since I wasn’t anticipating a second dirty diaper, shit would end up everywhere.
In utter frustration, I said the following, “Big boys NEVER EVER put their hand in their diapers.” I’d said this sentence hundreds of times in many different ways, but never with the words “big boys” at the front of the sentence.
Weeks passed without incidents. At first I thought it was a fluke, a small reprieve, but it wasn’t. He stopped doing it. Another eight months passed before he began potty training, but we didn’t care. Not one bit.
I still despise singing toys. Nothing reminds me of this period of our life quite like toys that sing the alphabet.
If you managed to read this whole post, feel free to leave a comment. Bonus points if you also happen to hate singing toys.
*Ten percent of autistic children and/or adults engage in fecal smearing. It’s unusual enough that I’ve only met one other parent whose daughter also did this.