Susan's Blog

Monday, September 26, 2016

Autism Takes Time

When Nat was a very little guy — before I knew about the autism that seemed to be knotting tight little nooses around his brain cells — I wanted nothing more than to be that friendly-faced mom who took her toddler to every single enrichment activity she could find. There was something called Warmlines, which promised mommy support and toys; Gymboree; library book hour; mother-child swim class; baby music school; and on and on. I’d go, but every single one of these activities blew up in my face.  I became more and more wary of the “amazing” teachers, the “patient” librarians, the fun-loving moms because my little guy just did not fit in. He would suck his thumb and just watch, or he would cry and cry. Or mouth the communal toys or walk in circles.

This experience was symbiotic, however. It was not all on autism. It was me, too. I don’t know if I was reacting to the Autism Unacceptance/ignorance going on with those mothers and their precious little normal kids, or if it was that I was going in with a big rock on my shoulder, but I was damned uncomfortable in those places.  I soon began to feel that everything was going to fail and that something was just wrong with my son, my parenting, and the stupid world.

To be really honest, I only blamed myself. Of course I did. Who blames a darling son, my Nat who caught my heart so hard that I almost didn’t dare to breathe. This boy, from the moment I clapped eyes on him, was in need of protection. Almost from the beginning of his life, I knew that my life was no longer my own.

I don’t know when it happened, sometime around when Nat was 10 when I got the idea to sign him up for gymnastics in Cambridge, with Special Olympics. I think what fueled this was a burst of development (on his part), a new level of communication skill, a new exuberance with the world around him. He did great in gymnastics even when things were falling apart for him in school and at home. And from then on, I put all my faith in Special Olympics.

We went through all the Phases of Special Olympics Parenting:

1) shy, hesitant, will-this-work?

2) hey, look at that, he’s actually playing!

3) hey, no one is judging him!

4) hey, the other parents get it!

5) hey, the parents are friendly!

6) hey, let’s make a playdate after practice! (First playdate!)

7) hey, the State Games are amazing hooplah-achievement-pride fests!

8) hey, there are other sports, too! All year-round! with the same guys!

9) hey, what else can they do, in addition to sports?

10) hey, my kid has a life.

Fifteen years after gymnastics, I am PhD-level Special Olympics Mom.  From Special Olympics I have made some solid friends, joyous people who make any excuse to throw a party where everyone’s invited, who find new organizations, new pursuits for our kids, who even create them. One friend found a violin teacher for his kid and out of that grew MUSE Foundation and two performing bands. Nat is now a drummer. Another friend has started AHEF, the Autism Higher Education Foundation, first as a partnership with the Boston Conservatory, and then with area law firms so that our guys can learn symphonic music, and also intern in offices doing data entry, shredding, copying, filing. Another friend started a social outing group so that our guys could go to concerts, sports events, movies, mini golf, restaurants. This venture led to our town expanding Parks and Rec to offer Recreation Therapy, and now our guys take cooking, nutrition, and computer classes. And one other friend discovered Ascendigo, a fantastic extreme sports camp for autism that firmly planted Nat into the Most Athletic Guy in Our Family category.

Nat learned how to ride a horse at Ascendigo, and that has now led to my finding him Equestrian Therapy at Ironstone Farm. I am hoping that there will be other animals around that will ease Nat out of his fear of dogs. But that may also happen through his Day Program, which offers Buddy Dog volunteering once a week or so.

So this fall, Nat has: Band on Tuesdays, Flag Football on Wednesdays, Drum Circle on Thursdays, and Equestrian Therapy on Fridays. In November we’ll start basketball on Saturdays.

I take Nat to these activities and I wait outside, or hang around the perimeter of the field. I talk to the parents or I don’t. By now I’ll see those friends of mine — the autism parents I’ve known forever by now — at one of the parties or the social group trips or the drumming. When I start to drag my heels and think about retreating — that decades old leave-me-alone tendency of mine — there’s this one friend who needles me into going. Autism friends don’t let autism friends sit home alone.

And if that doesn’t work, there’s always Nat who looks at his busy calendar and demands to go. I can’t imagine not having a full calendar now, and it’s because of Nat. Perhaps those neuron knots that seemed to be choking off his development just needed time to form their own pattern, and strengthen his mind into what it is today: powerful, determined, social (!), and ever-expanding, a universe in itself.





“Autism friends don’t let autism friends sit home alone.”

What a profound statement. You are an amazing writer. People don’t realize how isolated some families truly are. When my son’s autistic aggressive behavior was at a peak no one wanted us around,just the looks on people’s faces when you got to church, for example, was enough to make me feel as if just by daring to show up I had absolutely ruined everyone’s day. The guilt associated with trying to enjoy the service while I was apparently making the volunteer Sunday School teachers morning miserable was more than I could endure. I tried over and over to integrate us into all the normal things families do like going out to eat, movies, etc. It never worked. Blew up in my face, as you said, every time. As the aggression grew worse he was expelled from school, my family didn’t want us around, my lifelong best friend was the only one who could tolerate our visits, but my sense of guilt was so strong I rarely put her through it. When we did visit her it was simply because of being so desperate to converse with other adults and have some sort of life aside from autism I couldn’t help myself.
It felt like we were unicorns standing on the shore watching the ark set sail while everyone on it turned their faces away from us, to distant forbidden horizons. We lived in rural south Georgia at that time, I was recently another autism divorce statistic and the only group was Autism Speaks, they met once a quarter to talk about issues and that was it. I became so depressed and lonely, between the isolation and aggression, I developed PTSD. After 2 1/2 years of near total isolation, no support, struggling to physically control him daily, not being able to keep a job due to no one willing to keep him, I ran out of money and hit a breaking point. I called his father and told him I had failed, I couldn’t control him, and he was going to have to take charge of our son. I didn’t know what else to do. Admitting that I couldn’t control my son, whom I love so dearly was the hardest thing I’ve ever had to do. That was in 2010. I felt like such a failure that I didn’t want to go on living. But I did. And so did my son who is much happier and functions so much better without me being the primary caregiver. Wow, you just don’t know how hard that is to say.
I was determined that all of this suffering would not be in vain.
I went back to college and now I work for an agency that owns group homes for adults with developmental disabilities. Being the program director and in charge of admissions, I sit at my desk across from parent’s siblings, and grandparents who are overwhelmed with guilt because of placing their loved one in a group home because either they can’t control their aggressive meltdowns, can’t financially keep up, or they themselves have developed depression, anxiety, or PTSD. And the GUILT, oh dear God, the GUILT they feel for wanting to have a life of their own aside from being a 24 hour caregiver is just unbelievable. Most of them isolated and heartbroken because they feel like complete failures.
The looks on their faces when I say, I understand, no, truly, I understand. At that point they think no one understands, until I tell them my story, and they see that I am one of them.

“Autism friends don’t let autism friends sit home alone.”
No, they don’t. Or they just might break like I did. And they do, cause I talk to them EVERYDAY.

Once again, Susan Senator tells it like it is. Her warmth and caring heart bleeds onto the paper in words that only “we” can truly understand. Thank you Susan! Keep on keeping on! You are a blessing to so many!

— added by Win on Tuesday, September 27, 2016 at 10:57 am

I relate to absolutely everything you write,on a different scale.the unending love of a Mom ,the ferocious protection ….it starts then…you feel it.and it never goes away.much love…:)

— added by Lisa on Tuesday, September 27, 2016 at 2:48 pm