There’s always a kinship between us moms of twins, especially moms of twins where one of our kids falls on the ASD Spectrum, and the other doesn’t. My new kinship is with Linda. Below is her Autism story as she admits that she’s “not THAT type of mother anymore”.
If you tell me that you are worried about your daughter because she is 2 and still not really talking, I’m not going to tell you it’s ok, all kids develop at their own pace.
If you tell me that your 4 year old just doesn’t seem to be interested in playing with the other kids, I’m not going to tell you to stop worrying or that you are over-thinking it.
I might have once, because I know it’s what you really want to hear. I would have thought mothering is hard enough without adding more worry, let it be, let me calm your fears. But, I’m not that mother anymore.
Instead I am going to tell you about my son, Charlie. He is five years old and he has Aspergers. I always had the feeling that something wasn’t quite right with him. It seemed strange that while his twin brother rolled around and shook rattles he preferred to log roll himself over to the heating vent and pick at the screws. There was something odd about how he would spend so long staring at the circle of black dots that made up the speaker in his baby swing, cooing and smiling to it like it was a person.
But, I was a new mother of twins. I had just moved cross country to a place where I had no family and no friends and a husband who was trying to get tenure at a new university, working day and night to do so. I was tired, so tired, and the boys were hitting their milestones right on time. But mostly, I couldn’t imagine trying to tell these little snippets of stories to a doctor and being taken at all seriously. So, I told myself they were just showing distinct personalities and kept my worries unspoken.
At 18 months, Charlie developed an unexplained infection in his neck that killed several of his neck muscles, they had to be surgically removed to prevent further spread of the infection. It was 2 days before the doctors would tell us they thought he would at least live. We spent two long weeks in the ICU. A speech therapist worked with him daily to reteach him to swallow and eat. By then, the handful of words he had been using were gone. I thought this made perfect sense. If I could have wrapped our home in a bubble and never spoken again myself, at that point, I would have.
At the suggestion of our pediatrician, when by age 2 he still communicated in cave man grunts, we had him evaluated by early intervention. He’s a boy, they can be slow to speech, all my friends kept telling me. Twins talk later. He’s been through a trauma, give him time.
It’s what I wanted to hear. I needed to believe this meant nothing because my child had already suffered more than his share and I could not take anymore bad news. All those caring, supportive, and wonderful people around us were trying to help us have a little joy back in our lives. We all just wanted- no we needed- him to have the carefree childhood he deserved.
The evaluators came out and by then he had started picking up a few words. I down-played the whole issue. I told them all the reasons I just wasn’t that worried, but as a responsible parent, of course, I was just getting him checked out. They said he tested with some delays, but there was a large window of acceptable speech at this age and if I ever got more concerned I could call them back. All I heard from that was he was just fine.
Things progressed smoothly for another year until his preschool started reporting behavioral issues. He was aggressive with other kids, wouldn’t follow directions, and often tried to run out of the classroom. I began admitting to myself that there was an issue and got an appointment with a developmental pediatrician to get things checked out again. But, it would be a year before they could see us. In the meantime, he was kicked out of 2 preschools, refused acceptance to a third and banned from a community drop off sitter service.
When his appointment finally arrived I was prepared for almost any diagnosis. PTSD, surely. ADHD, maybe. Even schizophrenia, since he had recently begun telling me about all the pictures in his head and how he could watch entire tv shows in his head if he wanted.
There was one thing I knew we wouldn’t hear. Autism.
I was sure of it because my son was very affectionate with me. He looked me in the eyes. We had long reciprocal conversations. He wanted to play with kids, sure he was bad at it, but he tried. He did not flap his hands or repeat certain phrases endlessly or line things up in rows.
I was wrong. Wrong about my son’s diagnosis and wrong about what it meant to be autistic.
So, you see, if I suggest you should get an evaluation instead of waiting it out, it comes from caring. It comes from a hard won knowledge that the services are not a symbol that your child is somehow less, they are a pathway to help them be more.
I will no longer blindly assure you that everything will be fine, because I can’t be that mother anymore. But, I can promise you that in the end, however things land, I will be here to share a cheer for your victories and I’ve got a bottle of wine and some big shoulders to share for the rest because I am that kind of mother now.