Zach has been absolutely amazing with all the challenges he’s had to face: from managing pain to managing a flight of stairs. His freshman year finally concluded, and except for his sophomore year summer work, he was able rest and relax. He earned it. I’m happy to say our family is in a much better place than we were.
We couldn’t have done it without the support of his teachers, his guidance counselor, family and friends.
Zach’s accident has pretty much thrown me back to the days when both kids were toddlers, in that his father and I were not comfortable leaving him alone until he could walk unassisted, which wasn’t for a few months. It’s weird negotiating with my husband about when I can run errands, or on a rare occasion get out to see a friend. Although, we can never leave Justin alone, we’ve been spoiled for years with Zach’s independence, and it’s jarring to see that taken away. I don’t take much for granted in this world, but I appreciate what he had and what he’ll got back to, even more than I did months ago.
Spending an enormous amount of time at home has given me the opportunity to think, both about the ramifications of his accident, and the aftermath. We had a huge outpouring of support from multiple places, so much so, that it was hard to keep track of everyone. I took a lot of people up on their offers and they came through – from food and wine (!) and medical equipment, to “babysitting” Zach so Jeff and I could take Justin, our severely autistic nineteen-year-old, to Great Adventure. It was wonderful to weather this crisis with so much support.
And it made me realize, through so many other crises in the past eighteen years since Justin’s diagnosis, how I should have asked for similar support.
There have been so many different problems, both large and small since the day Justin’s pediatrician shoved a handful of badly printed articles with the word “autism” in the title, into my shaking hands. There have been: periods of sleep deprivation we thought would never end, food refusals, a few attempts at elopement, figuring out how to pay for services without insurance coverage, issues with transportation and schools, aggression, finding friends, Justin’s tic disorder coming to call a few short years ago, and the loss of his words and personality.
The list can go on and on, but I don’t want to get too dramatic here.
The truth is, we could have used this level of support throughout all of these incidents, but honestly, we were just trying to make it through the day, and often I didn’t have the energy to reach out. It’s difficult to explain to people not raising a disabled child, that your fear that what you’re dealing with may last forever, is sadly very real.
Still, I should have reached out more.
I’ve always found the difficult times with our son to be cyclical. I’ve often felt that autism is like playing Whac-A-Mole – you conquer something and eventually something else crops up. As each problem presents itself, don’t be shy about talking about it and asking for what you need. When my youngest broke his hip there was such an outpouring of support, in part, because people could relate to this accident- it could happen to them or someone they love. So many of the things that autism families live through are foreign to neurotypical families.
So, my advice is, if your child has recently been diagnosed, start a tradition with the people in your life. Let them know what you’re facing, and let them know what you need. If it’s food, ask, but be specific. If it’s a desperate need to get out with your significant other, put that out there too. If you need help taking your child to the doctor, find that person. Collect, if you can, a posse of people, all who will have different strengths and are able to help you in different ways. Start early!
People need to know what you’re all going through, and they need to know specifically how to help. I have truly found that people want to help, they just might not know how.
And ask again.
Create assistance traditions. The worst someone can say is no.
Find your people.
And never stop reaching out when you’ve found them.
ABOUT THE AUTHOR:
Kimberlee Rutan McCafferty is mother to two sons on the autism spectrum, and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim is also the author of Raising Autism: Surviving the Early Years, which is on sale at Amazon. https://autismmommytherapist.wordpress.com/me-and-my-blog/
Read the article here.