It's ok to ask for help

This is a post by Kimberlee Rutan McCafferty, author and 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 a blog about her two children with autism. And the author of the book called Raising Autism: Surviving the Early Years. 

It’s been six weeks since my fifteen-year-old son broke his hip at school in PE class, and the dust is just beginning to settle. Yesterday in physical therapy we were rewarded by watching his first tentative steps, and I have to say it was as thrilling as the first time around.

Looking for the bright side here.

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 will finally conclude this week, and except for his Sophomore year summer work I’m hoping he can rest and relax soon. He’s earned it. I’m happy to say our family is in a much better place than we were in early June.

We couldn’t have done it without the support of his teachers, his guidance counselor, his 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 are not comfortable leaving him alone until he can walk unassisted, which won’t be 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 get back to even more than I did a month 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’s been 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.

So my advice is if your child has recently been diagnosed, start a tradition with the people in your life. Let them know what your 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 be able to help you in different ways, and start early.

I’ve always found the difficult times with our son to be cyclical. I’ve often felt that autism is like playing wacamole- 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. People need to know what you’re all going through, and they need to know specifically how to help.

And I have truly found that people want to help, they just might not know how.

Ask.

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.