I’m tired of being called brave. But being the mom of a deeply autistic young man of 22, I can’t avoid it. Because I survived. Ever since Nat’s birth, in the Autism Stone Age of 1989, I have had to be a Saber-Toothed Tiger Mother — or at least pretend to be one. From finding the right doctors to getting my town to do right by him, to also doing right by my other two sons, I have always h ad to be strong — or feign strength. What to expect when you’re not expecting autism? No one has real answers. They didn’t then, and they don’t now. It has always been up to my husband and me.
I never thought that figuring out autistic adulthood would be the same way. Now that Nat has finished school, I feel like I am right where I started, the diagnosis days: grieving, confused, panicked. I’m sad because I miss the comfort and safety of the old routines.
I miss the school-day structure and the knowledge that Nat had caring, qualified people teaching him things. Even when Nat moved out at 17 and into his school residence, I felt like we had a routine, and a lifeline, in the school professionals. Anchored by the federal mandate of special education, staffers were required to be responsible for Nat’s growth, and they were. But it isn’t even that incredible system that made the school years so great. Teachers don’t work with autistic children if they’re concerned about all the regulations and paperwork; they go into teaching guys like Nat because they are game for the challenge, they think on their feet and, most of all, because they are special.
Those teachers who worked with Nat through the withdrawn, too-quiet years to the scary-tantrum phases — they are the heroes.
Still, I am told that I am special because I am Nat’s mom. As though I am a saint, somehow chosen. But I’m not. I’m just a mother trying to raise my son to be the best he can be.
The other thing I hear a lot is that Nat is an angel, closer to God than others, here to teach me something. No, he’s not. He is just a complex young man. He’s not a spiritual messenger or a puzzle. The adult-services system, or perhaps the lack thereof, is the puzzle.
Helping Nat have a decent adult life is our family’s greatest challenge — not Nat himself. We want him to have a life with something to do: a job, volunteer work; a place to live safely, cared for; days with a rewarding rhythm. These are things I’ve been working on since he was a teenager — along with his school. Those teachers had Nat working at Meals on Wheels by 14 and at Papa Gino’s by 19.
Now Nat is transitioning to adulthood, He is finished with public education services, and he begins navigating the far more complex adult-services system. I’ve done everything “they” tell you to do. I attended workshops, seminars and conferences. I pushed to get Nat funding and to qualify for whatever programs might help him live as independently as possible. I know I can’t afford a st aff person myself, nor will I live forever.
I did my homework. I visited an adult group home before Nat graduated and did not like what I found. Care was adequate but lifeless. Some of my friends’ children had it even worse: from regularly missed appointments to soiled, unchanged underwear. We’ve all learned that adulthood can be abysmal for kids like ours. And yet without the programs we’ve got — troubled though they may be — we have practically nothing. I cannot fathom what would happen to all of us without programs such as Medicaid and the other gossamer-thin safety nets.
It dawned on me recently that I am going to have to do more than act tough and tireless: that I have to become what they say I am. Because I have to face the fact that no matter how hard I push, we still may not end up with a good situation for Nat. If only there were a waiting list for a stable adulthood experience like those to get into the good autism schools. I know how to be on those.
I’ve tried for the past year to put together my vision for Nat: a group home of my own, with like-minded families and staff that we help choose. And every time I get close to succeeding, some piece or another does not fall into place. You can’t get funding until you have a group. You can’t get the group together until you have a house. You can’t get the house until you have the funding.
And so, on top of all the emotional upheaval, Nat’s turning 22 is a Catch-22. Funding is scarce, and the programs can be iffy because of it. As always, there is no one to ask; every expert and professional has a different story. In the end, I’m figuring it out as I go, only now I am no longer a young mother.
I am, however, still Nat’s mother. So I suppose I will continue to roar.
Susan Senator is a writer in Massachusetts and the author of “The Autism Mom’s Survival Guide” and “Making Peace With Autism.”