Like any unexpected life changing moment, it took time to accept. The first 48 hours after the diagnosis I didn’t stop crying. Not because I thought our baby was dying or that this was the worst possible news. I was learning to accept a new kind of life than the one I had imagined and wanted. We were entering a lifestyle we knew nothing about and the pressure to do the best we could was horrendous. We would have to deal with strangers studying our child, making him cry and panic. And worse, I would have to study that and continue it at home. I have accepted this life is, but that doesn’t mean I’m not still emotional about it. I once spent 10 minutes gushing about Finding Dory and literally couldn’t stop myself from crying over how Dory’s parents were essentially giving her coping mechanism therapy and worrying privately about her future. Dang does that cut to the core of a special needs parent.
On March 17th 2016, my son was diagnosed with autism and sensory processing disorder and I kept it private.
We told family and friends, we informed his doctors and teachers, and we started the arduous task of getting him the therapies he needed and starting to understand this new life we had entered.
But I didn’t write on Facebook or any other social media ‘My son has autism’. For those who do not know, autism is a neurological brain disorder. It is a spectrum, an umbrella term to cover several disorders which impact communication skills, social interactions, and repetitive behavior. I try to explain it simply as they perceive the world in an unusual way because information is processed and organized in the brain differently than neurotypical brains. They may get distracted by details and ignore the big picture, they may not understand sarcasm or empathize with others. Their brains are more likely to favor problem solving over interacting with others. They may require knowing exactly what is going to happen next in order to prepare or be comfortable with what is happening (different or new situations challenge their brain pathways far more than it would for a neurotypical person). The sensory processing disorder means the sensory signals get mixed up in the brain, so lights can be too bright, sounds can be too loud or too soft, and smells can be overwhelming. They may not be able to judge where their limbs are in relationship to their bodies or what direction gravity is. They may need to seek out physical stimulation due to being tactilely numb. The descriptions are innumerable, mostly because each child with autism is different.
There is an endless list of successful (although that term can depend on your definition) people who are on the spectrum and can function in our society (again, depends on your definition of function… keep a job, have friends, have interests, live without a support person, etc). There are also those who will never live on their own, who cannot communicate, and will require a lifetime of assistance. Both ends and everyone in between fall on the spectrum.
Keeping it private was not out of shame or disapproval and I don’t exactly know why I never made this statement. At some point I realized I was purposefully avoiding posting articles on autism and was giving casual mentions of his therapies instead of being open of what a big part of our lives this is. So why announce it now, one year later? I’ve gained perspective and am far more educated about what this means for us. I’ve also learned how little is known about the autism spectrum by most people, especially if they have not personally experienced it and how helpful a person’s personal experience is to knocking down stereotypes and poor descriptive choices (for example, they don’t “go crazy”, they are “triggered” or “have a meltdown”).
Some of it is wanting to keep parts of our lives private, which is increasingly difficult in this age of social media. For a while before being diagnosed, my son struggled with speech and I once posted a gushing update on him saying his first sentence. ‘I don’t talk about it much, but he has a severe speech delay and we have worked very hard to improve his language skills.’ One of my sisters told me the next day how proud she was of me for wording the post the way I did, as it can be difficult to accurately portray life on Facebook and it was a nice reminder that major health issues can be happening to anyone without many people knowing. And a lot of this experience has continued to be private. In hindsight, I can say we were slowly going through the ebbs and flows of grief, denial, and acceptance over this past year. It is a complete right turn from the path of life we thought we were going to be on.
The diagnosis has changed me in many ways. I’ve always been one to research heavy, but now most of the research I do is on a brain issue whose tagline should be ‘every case of autism is different, so it’s possible this won’t apply to you. But still learn this because it could become an issue in 6 months’. It takes some patchwork creativity to put together a plan, knowing you will constantly need to replace sections and adjust the parts you already have. I have become proficient at keeping medical records and pushing for what we need; our health insurance has started to fear my phone calls as I find hearing ‘no’ when I have proof of ‘yes’ lets out The Mama Hulk a bit.
I have become more flexible in some areas and hard steel stiff in others. I strongly enforce how we react to situations, knowing what and how we are teaching him could be a tool to use later in life, but only if it is used consistently. Some days doing this drives me to tears; no mother wants to hurt their child and pushing his boundaries causes his brain to throw up the ‘fight or flight’ instinct. I adjust as N’s preferences change (Daniel Tiger is so last year; Thomas the Train is opening a new world for him). I cry more easily over trying to do the best I can for my child and I’m more understanding when I see a child melting down in public. I understand because I have been there (haven’t all parents in one way or another?) and realize it’s possible that it’s not poor parenting choices or an out of control child; they might be on the spectrum and something has triggered them.
Nothing about autism is easy. It has put a huge strain on my marriage and on my work availability due to driving N to 12 hours of therapies over 6 days each week. Our budget has to be adjusted to account for more doctor appointments through the year, or when he has a new interest/obsession to fulfill. It is impossible to know if my son will enjoy going somewhere or if it will be a 30 minute meltdown we will all have to recover from later. We enter situations knowing we might have to leave early, or have 3 backup distractions, or even a full sensory blockade. This applies to everything: going to a friend’s house or the movies, introducing him to a new therapist or teacher, stopping in at Target, even dinner time. We watch his bowel movements knowing there is a link between autism and gut bacteria problems, which could prevent him from absorbing key nutrients. And introducing new foods or just medication for a cough can throw everything for a loop, requiring weeks of observation to judge if the new path is better than the previous one. Nothing is easy about watching your child have multiple breakdowns in a day and only being able to guess that his stomach hurts and can’t tell us. Because it could just as easily be the tag on his shirt is scratchy and setting him off.
I feel the blogger Autism Daddy, who is behind the Sesame Street character Julia who is gaining fame as the puppet with autism, said it wonderfully: “Removing the autism would remove what it is that makes my son himself. I wish I could remove the negative symptoms of the autism.” And I get that. Many days I wish I could take away my son’s insistence of completing the same bedtime routine that takes 1.5 hours, or his inability to physically keep up with his cousins while running together, or his sensitivity to sound and space (the size of a room will affect his comfort levels), or how polarized his emotions are (he doesn’t get a little upset or pout, it’s a full meltdown). But I would also lose his love of counting, matching ABCs to words, his insistence that you smile when you are happy, and his ability to absorb language (he started using ASL at 15 months and knew over 300 ASL signs by the time he was two years old).
And while our lives are taxed, it is not depressing. Every day is something, but let’s face it, we’re not dealing with life and death. I am conversing with doctors and therapists daily, but I do it so my child can function in society, not to ensure he will breathe or live to see tomorrow. And even where we fall on the spectrum, we are lucky. I consider N to be high functioning (although I understand some people prefer not to label kids high or low). I don’t have to worry minute to minute that he will self harm or endanger others with outbursts, other than making then a little scared from his screams. I have learned the way his brain categorized speech patterns and most of the time can translate, which reduces his frustration. I love when I can hate the same things a parent with a neurotypical child would, like being woken up at 5am with him asking for cuddles or correcting him when N is rude to an adult on purpose.
And so we continue on, going to therapy, living our now normal every day lives, trying to incorporate new things and enjoy the calm moments. It helps knowing N has already shown great progress over this past year with his various therapies, gaining friends (and even a crush) at school. This winter started with a phobia against snow and we ended it making foot prints and mini snow men in the last patch of snow in the yard. So while I may be more emotional day-to-day, less available as a friend, and more stressed overall, the strongest emotion I feel is hopeful. Our lives are not easy, but no one ever guaranteed they would be.