The latter half of this week I spent in the mountains of western North Carolina where my oldest son Colt is enrolled in a school for boys on the autism spectrum. I share this because I think it is critical to talk about accommodations and challenges for children with special needs as well as engender solidarity whenever possible.
I have learned a lot over the three years since Colt was diagnosed with ASD. I have learned that being designated on the spectrum can in fact be a very helpful piece of information for not only a child’s parents as they seek the right support for their son or daughter, but also for the child themselves. Colt is someone who is acutely aware of how his brain functions and what he needs to learn and function at his best. Is there a better gift for a kid?
I also think talking about this subject is an important step to raise awareness regarding this population as well as to affirm your child. If I were to feel shame what would that mean for Colt? Regardless of whether I tried to hide that shame from him I believe in my heart he would feel it. I am not ashamed in the least. I wouldn’t change a hair on his head. He is the kindest, smartest, funniest kid around and I would do anything to make sure the world is a little bit gentler on him.
I have a friend who’s autistic son presents differently from Colt. It is, afterall, a spectrum. There are a million shades of gray in the world of ASD. After a recent visit she commented to me that she thinks it’s an easier fate to be her son. He is not as verbal and has some classic behaviors that identify him more easily as autistic than Colt. I heard her out, protested a bit because I don’t think any version of mothering is easy and I am the last to judge or quantify any mother’s challenges. But upon reflection I couldn’t argue too much. Colt sounds like a professor, looks like a man (at 15 he’s 6 feet tall and 190 lbs), and is at the very high end of the ASD spectrum in terms of functionality. His symptoms are more nuanced. The heartbreak of being his mother is to watch new acquaintances misunderstand him, deem him rude or worse yet, poorly parented. They don’t understand that when Colt puts a container of watermelon back in the fridge, even if he left the top on the counter and the fork in the fruit, that’s a major win. Executive functioning is one of his biggest hurdles, and I find myself heated when having to defend what I know is real progress for him. Social cues are always very hard for him to pick up on too, and he can seem uninterested and arrogant if you don’t realize that he just experiences the world differently than most people.
He is currently at an amazing school for kids just like him. The entire student body is 34 kids. Why? For a variety of reasons. First off kids on the spectrum do much better in very small classrooms with a lot of support. They have frequently been the subject of discipline in mainstream schools for behaviors that they have little to no control over, and this leads oftentimes to a severe lack of self esteem, depression, and even suicidal ideation. In his current school Colt is gently redirected if he acts impulsively, and there is always a coach or therapist in the vicinity to walk him through a tough social situation that may not have gone his way. He learns to reframe, to take a breath, and to consider the consequences of indulging his impulsivity.
Secondly these schools are nearly prohibitively expensive. When I say expensive I mean “more than most people make in a year” expensive. Much more. Thirdly, not all families have access to the resources, either educationally or financially to avail themselves of therapeutic educational consultants, high level psychiatrists, and the like. They might not be able to afford private neuropsychological testing, forced to opt for the tests offered by their school districts which are of varying degrees of quality. They might not even know places like Colt’s school exist, and may find themselves mired in the reactive reality that many parents of autistic children exist in.
I was sitting in the parent workshop on Thursday and they asked us to go around the room and say a bit about our sons and their journey leading up to today. Everyone cries. When it was my turn I kept my composure and said how grateful I was to be in a room full of such mindful, fortunate, proactive parents and that I think of us as the tip of the spear. For each of our 34 families, how many children will never know what it is to be affirmed, supported, and taught how to live independent, content lives? More than I can bear to think about. What I felt most of all was that gratitude, that I was able to do something so life-changing for Colt. I could give him the gift of community and understanding. And we had to jump through endless hoops, and 8 different schools/programs in the last 5 years to get him to this soft place to land.
I don’t know the answer to this issue, but I feel the first step must be to shine a light on it. I also want to encourage anyone reading this to come from compassion when a mother tells you she hasn’t seen her son in three months. Or that he is in a psychiatric hospital, or that no he won’t be at the town high school this fall. Know that as mothers we all face tremendous challenges, some harder than others but all hard. I know in my heart that this, visiting Colt for three days in three months and leaving him yet again is what being as good a mother as I can be to him looks like. You don’t need to understand, just know I am doing my best. Just like all of us.
Amy, I found your post to be so beautifully written and quite moving. No one could ever want a child to suffer from being misunderstood or feeling shame or “wrong,” but autism changes the game especially if adults don’t understand and hold space for the nuances of this condition. Your post gives a thoughtful inside look and calls for compassion and understanding. Thank you for sharing your story. Wishing you all the best, Mary
I so appreciate you taking the time to read this piece and even more to comment. I really mean when I say that solidarity means so much to me, and if by talking about my experiences in the realm of mothering a special needs child I am making one other mom feel slightly less overwhelmed and alone then I am content. Love you! Thank you for this xoxo Amy
Thanks for sharing. Sending great vibes and lots of love!
Thank you for this Ginger. xo Amy
You are an amazing mother for endlessly trying to find him the right fit and place to be. The gift that will keep on giving…feeling like he has a place. I give you immense love and credit xoxo
PS, you are an awesome writer!!!
Thank you for this. It means more to me than I can say! Really appreciate you taking the time to read and comment. xoxo Amy
So much love and suppprt you beautiful mama you.
Sent from my iPhone so please pardon typos 🙂
Thank you Christy 🙂 So nice to know he has a good friend in the neighborhood there. xoxo Amy
When I read that Colt is “someone who is acutely aware of how his brain functions and what he needs to learn and function at his best” it reminded me of this quotation I found today:
“Self-knowledge guides us in knowing when to give up on the hope of combating disease and when to soldier on; it prevents us from making decisions in which the real aim is to shore up our own personal defenses against insecurity; it shows us the sources of our own fears of death and lessens their acuteness; it outs our fears of passivity and impotence into perspective so that each failure of therapy is not the expense of reason. Most importantly, it enables us to fulfill our pastoral role as surgeons. This, and not the technology, is what being a doctor is all about.”
—Nuland S. A surgeon’s reflections on the care of the dying. Surg Onc Clin N Am. 2001;10(1):1-5.
Just want Colt to know that he can be an MD should he wish* and that self-knowledge is great for any field he may choose.
*Even though I am currently applying for residencies I do agree that medicine/ surgery are only for those who are… too (? stubborn) to do anything else.
Love that quote Marnie! Incredible well said and so thoughtful of you to share. Thank you for being on our team and sharing your support for Colt and my family. It means a great deal to me. xoxox Amy