Next month V turns 21 and no, I’m not preparing a celebration in the way one would for a neurotypical person reaching that landmark. Instead this week I’m scheduling and preparing for a re-do of the comprehensive assessment tool that will determine how much annual financial support V will receive based on how I answer 18 pages of questions about how well he functions, how much support he needs to perform basic tasks, his behavior.
The lower the ranking the more money he will receive so parents are advised to answer from a worst day/case scenario. Pages and pages of yes, he still needs help with…just about everything. This is not the place to sing his praises or talk about his strengths; the whole point is to emphasize his deficits. So it’s a very depressing process, the opposite of a celebration. Hardly what we ever imagined.
I still remember V’s first school after his diagnosis. We liked the location in Dumbo Brooklyn, the kind teachers, the bi-weekly support group for parents of the 3 and 4 year olds in the early intervention program, most of us still shell-shocked from recent diagnoses of autism, still trying to make sense of this strange new world. It was, given the circumstances, a generally positive experience.
The one thing that made us uncomfortable were the big kids in the elevator. The teens and young men – there may have been girls too but I remember the guys, because there were so many more of them – with their odd behaviors and demeanor, with their pacing and flapping and lack of language or social skills, still needing an adult to accompany them to their classrooms. That was not the future we were told about.
When V was first diagnosed and we signed up for early intervention a social worker handed us the widely shared Welcome to Holland poem by a mother of a son with Downs Syndrome, a very different condition than autism [https://www.dsasc.ca/uploads/8/5/3/9/8539131/welcome_to_holland.pdf ]and the book Let me Hear Your Voice, written by a mom with two boys with autism who she magically “cured” with round the clock help from ABA therapists in her big Upper East Side apartment. I couldn’t relate to the specifics of her life yet I longed to believe in the storyline, which was the only story I heard back then. That if you just work really hard with a dedicated team of professionals and supporters/cheerleaders, your kid would make remarkable progress. Surely things had changed since the big kids in the elevator were V’s age, because there seemed to be such a gap between where they were and the bright tomorrow we were assured awaited us.
I know lots of parents of kids with special needs who have had the opposite experience: they were told all the things their children likely wouldn’t be able to do, the struggles they would have, the lack of opportunities. And it is so much easier to get behind them and cheer them on (You show them! They say no, we say hell yes!) But that wasn’t our experience. We were inundated with the positive. There were new and better interventions and therapies being developed all the time. We and all the dynamic committed members of Team V would rally round and we’d put our noses to the grindstone and we would reshape that bleak sounding future into one where anything was possible. The little boy who had regressed so severely, who stared into space and had lost all his language and could no longer relate to others, he would evolve into a well rounded child who spoke full sentences and looked people in the eyes and made friends and learned to be independent like any typical kid. I didn’t fear the future back then, the future was our friend.
I never could have imagined the life we have had, the setbacks and disappointment. That while V has made progress and has many strengths and gifts as a person, his own unique personality and form of intelligence, there would be so many challenges. I never looked this far ahead and when I did I never could have fathomed that 21 would look like this, that V would in fact fit right in on that elevator from long ago, that it would be so obvious to anyone observing him that he was on the more severe end of the autistic spectrum, that we would not be in Italy or Holland or any other country in existence and instead live in some parallel universe no one had ever described to me. That yes, there would be beauty and bounty scattered throughout the rocky road yet walking that road could wear a person out.
Were I to be a social worker greeting the newly diagnosed, I’d give them completely different materials to read, radically different stories to hear from a wide range of perspectives and experiences. I’d say yes, try everything, be committed to your child’s progress in this life and also be open to the full range of possibilities. Don’t compare, don’t blame, let go of those habits that will make you feel worse and concentrate on what is. Find people who will be supportive, who won’t judge or get uncomfortable when you share your truth. Take time for yourself because this journey can be enervating and you need to conserve your strength.
Develop a thick skin because a lot of people will be unkind and insensitive. (I’ve never been able to do this myself yet I’d urge anyone to try not to be as thin-skinned as I am.) Be forgiving, of yourself and others. Learn to live with uncertainty because you will face much that is unfamiliar, that has nothing to do with what country you are in or what language is spoken.
Find comfort where you can yet don’t get too comfortable: just when you feel at ease, that you know the rules and routines, they will change. There’s no room to be complacent. Then I’d hug that parent with all the love I had and let them know that they were not alone even though the road might feel lonely.
I can’t remake that road or re-write my story. For now all I can do is re-take this assessment next week. And keep planning for a good future, a future that will be our friend.