Autism TreatmentAutism Information for Parents, Practitioners & Professionals…

Autism Information for Parents, Practitioners & Professionals…

What Keeps Me Awake at Night?

Kammy Kramer*
Eagan, MN

“I know what keeps me awake at night, and I’d like to know what keeps you awake”? This was a note I sent to some of my ASD parent friends in December, now that some of our kids are moving into or getting ready to move into middle school, we just don’t see one another as much, and I missed them.

Wow – in many ways, it doesn’t seem possible that autism has been a part of our family for nine years. I can remember so vividly sitting in that room and having them hand us a piece of paper that would change

our lives forever. What still surprises me is that there are days now and then that the pain feels as fresh and raw as it did in the beginning. Not as often, to be sure, but it’s a difficult balancing act for me to deal with acceptance and still believe with every fiber in my body that my kids can accomplish remarkable things if we work hard and put one foot in front of the other.

Maybe I’ve been thinking about the beginning of our journey a bit more because Dr. Thompson kindly offered me the chance to try penning a parent column on this website. Dr. Thompson was there for us in the bitter beginning, and frankly, without a doubt, saved our family. When our sweet little Elliott was diagnosed with ASD at 2 years, 11 months, our life was in utter chaos. He could not speak, was not toilet trained, and had over 100 documented acts of aggression per day – including life threatening situations towards his then infant brother, Henry. Within 3 months of working with Dr. Thompson and an amazing team of professionals, Elliott was speaking in full sentences, was toilet trained, and his aggression was virtually eliminated. Life. Changing. Stuff.

The years have passed; Elliott’s made much progress, and yet continues to have his share of challenges. Our family has dealt with the diagnosis of Elliott’s younger sister, Ada, with ASD which makes our schedule very full of activities/therapies/appointments to help each of our kids reach their best potential.

In the midst of all we have going on in life, we often find ourselves not thinking about big picture stuff because we are dealing with the day to day things that come up that keep us running from week to week. But one night, I found myself reading an article about an adult sister who was sad about the transition of her brother who has autism to a group home, and the impact on her entire family. For some reason, it just hit me hard, and I started to cry and could not stop. You see, for many years, I could not even go there – not even for one tiny second. I could not read the articles about transitioning into adulthood nor could I allow myself emotionally to even consider what kinds of services and supports my kids will need as adults. This article made me face many of my fears straight on, and I’m grateful that I stumbled upon it when I did, because as it turns out, I am far from alone.

The tremendous group of parents that we got to know during the early years of our ASD journey is still my core support system even though our kids are getting older and we don’t see each other as much. That said, when I reached out and suggested we meet up for coffee and chocolate (if you really want to assemble a group – even crazy busy ASD parents - include chocolate!) we collected a fun, smart, engaging group of women.

Guess what? I was not alone – all of us, to some degree, had spent time thinking about what needs to happen over the next 5-7 years in order for our kids to have the various types of supports needed to aid them in transitioning to a successful adulthood. Yes, it was scary to talk about, and yes, we have more questions than answers. But that night, I didn’t have any problems sleeping. Not because I’m not worried about what life has in store for our family over the next several years, but because together with paren
ts, professionals, educators, the medical community, and advocacy organizations, I now realize it’s more about asking the right questions than it is about having all the answers. My ASD Mom friends and I might not solve the worlds’ problems, but we’re not afraid to work hard (well ok – chocolate helps) and that makes me want to roll up my sleeves and make a difference! As with everything ASD, it’s not a sprint, but a marathon . . .

*Kammy Kramer is the mother of three children, two of whom, 11 year old Elliott (shown here) and a sister also has an autism spectrum disorder. Kammy is currently
the Autism Speaks Family Services Community Liaison for the Minnesota Walk and volunteer for numerous autism organizations. She also maintains her own blog on parenting children with autism Perspectives from the Red Couch. Thanks to Kammy for this wonderfully insightful piece. Parents facing the transition for school to young adulthood may find the work of Carolyn Hughes and Erik Carter at Vanderbilt University’s Kennedy Center. They have written two books of particular interest, The Transition Handbook and Peer Buddies Programs