I made a new friend the other day at the park, our kids are in the same class and we politely started talking while the boys ran around. Her daughter was there also, playing in the sand and swinging alone and while we talked she would casually say things about her daughter, who she referred to as monkey:
“Monkey can’t eat soy, dairy, sugar or gluten, so these cookies are great!
That’s pretty normal for San Diego, so I didn’t think much about it but then she said
“Monkey couldn’t go to any of the private schools around here so that’s why we are at this school, which we love!”
This peaked my interest, so I asked:
“Why can’t she go the private schools?”
“O, she has Autism and is nonverbal so they can refuse to accept her.”
internal voice: WHAT! OMG, she said that so casually!
“You know, R has Autism too!!!” I blurted out, probably too enthusiastically.
“Yeah, but he can talk, Monkey is smart and can talk but she just refuses to, that’s so frustrating”
She didn’t even flinch when I told her R had Autism and responded as if I had told her the weather was nice that day.
The exhale I had in that moment reminded me that I tend to hold my breath in those first meetings with parents. I’m always wondering in the back of my head, do I tell them or do I say nothing?
Usually I say nothing.
It is not that I am ashamed of R and his diagnosis, or that we have a hard time with R being Autistic, I feel the opposite in fact, our life is so much more colorful, and magical with the way he views the world.
But in that moment my excitement was more about relief. Relief that I didn’t need to explain what Autism meant, or give an explanation that R is high functioning or that I didn’t have to feel her uncomfortableness of how to react, because I knew she just GOT it, and she didn’t care, it was no big deal.
I wonder if we both felt that same relief, because her next question was excitedly
“Where do you work out!?”
It was as if we got that elephant in the room out of the way and we were able to just be parents. There wasn’t the wonder of if I would disclose R’s diagnosis and I wasn’t faced with the uncomfortable worry of other people and their perceptions of Autism.
I’m not judging anyone for having uncomfortable feelings. I too, before I experienced Autism thought all sorts of negative stereotypes about autism that I wouldn’t have chosen for myself or my child if I’d had a choice.
But life handed us Autism and the only choice was to enter that world and become educated and skilled in helping R succeed. In doing so I realized that it was not as scary as I had thought and wasn’t going to be a horrible burden or a lifetime of struggle. I saw that my little boy was still the amazingly creative, funny, sweet, musical, engineer, lego loving kid that I had always known. I also realized that I have no idea what Autism really is.
All I know is every detail of how R’s Autism manifests. The saying is: “if you’ve met one person with autism, you’ve met one person with autism.”
What was the same about my new mom friend and I was that we understood a language and lifestyle that comes with being autistic. When I told her we had to leave early for therapy, it wasn’t weird, in fact their ABA therapist was coming over later that night too.
I came home that night excited and giddy as I told Mr. Science all about my new friend and our day.
I know it may sound a bit over exaggerated to get so worked up over this moment but in a world of parental posturing and properness, It felt so free to just be ourselves, no apologies, no explanations.
It’s been a journey to where I am today with my sons diagnosis and I would be lying if I didn’t say at some point I just wanted him to be “cured”, or “fixed” but really if I stripped away the Autism would R still be R?
R has made leaps and bounds in his communication and ability to make new friends. I love that people see him for who he is and love him all the same, this makes my heart leap for joy. He has taught me to communicate clearly, to say what I mean and mean what I say, to set good boundaries for myself and for him, and to play and imagine and forget this world on a daily basis. I’ve been to outer-space and visited the moon more times than I can count!
I’ve moved beyond wanting to cure him of his Autism, my wish is to give him all the resources and support in the world so that he can feel good, confident and happy.
But, I think that’s what we all want for our children.
I guess we are no different.
Thanks for reading!
As a side note I am reading an amazing book called Far From the Tree: Parents, Children and Search for identity by Andrew Solomon, which talks about families dealing with deafness, dwarfism, autism and other disabilities, its a a great look at how we view these conditions in our society and he presents some interesting ideas and comparisons that have really made me think differently about autism.