I’ve been thinking a lot about how I learned to be a “Hopeful Parent”.
I realized this week that so much of what I do every day, I learned from my dad. This week marks twelve years since we lost my dad to pancreatic cancer. In honor of him and Pancreatic Cancer Awareness month, I thought I’d share some of the lessons he taught me about parenting a special needs child, without him even knowing it.
Who cares what anyone else thinks? This was usually his response to me when I would point in horror at his ripped sweatpants patched together with duct tape. What will people say when they see you out dressed like that? His answer was always “who cares what anyone else thinks?” As a kid, and especially as a teenager, I was very focused on what other people’s opinions were, as most kids are. My dad’s view was that looks didn’t matter as long as you were comfortable enough with who you are as a person.
I hear that voice in my head a lot these days. After my son’s autism spectrum disorder diagnosis, I worried about what other people would say. Would they view us differently? Treat us differently? I spent a lot of time inside our house to avoid the judging eyes of others. But as I’ve become more comfortable with his diagnosis and my abilities as a parent, I’ve also stopped caring about what others are saying. I can’t wonder what parents at preschool think when I keep my son in the car until the teachers come to the door. I do it so he doesn’t run away from me or get so riled up his whole day is off. We're also going to go to the playground, grocery store and the mall. Those places are for us too. It doesn’t mean that I excuse or accept meltdowns or poor behavior from him in those places. But I will leave with him because I know that behavior is not acceptable there, and not because the mom texting on the park bench is glaring at me.
Use your resources. I’ll admit it, even as a kid I was bad with money. So I was always in need of a summer job and my dad would end up calling someone he knew. I remember resisting this as a teenager – not only was it embarrassing to have your dad making those calls, but even then I wanted to get the job based on my own skills, and not just because he knew the director of the summer program at the Y or played touch football with someone in the Mayor’s office. My dad would tell me that it was ridiculous to not use those connections, and that he was only opening the door for me. I still had to go through the interview and prove myself on the job. And of course, he would always return the favor for the people who helped me.
It’s clear that as parents of special needs kids, we need to use all our resources and connections. We rely on each other for information about treatments, diagnoses, and doctors. We have to share what we know so that others can benefit from our successes and mistakes. It’s also clear that we have to help each other out, and it’s ok to accept that help. Waiting lists are long. Insurance paperwork is hard to understand. If a friend of a friend can make that call to get us in to see a doctor, then let them call. If someone in my support group has had success with a great speech therapist, then I want their number. To be my child’s best advocate, I have to put aside my pride and my desire to do it all on my own. Because we have to help each other. It’s the only way to get through the hardest of days and night. And of course, just like my dad, I will always return the favor and help someone else out as well.
Just relax. My father was always a bit of a homebody. Unless it was going out to eat, or going to play ball, he preferred to just be at home. I have vivid memories of him on the couch reading the newspaper or watching football with my brother. We would sit together to watch the news and talk about it, or keep score while watching Jeopardy on TV. There were trips and activities that we didn’t do because he didn’t want to. And in his mind, that was fine. We didn’t have to be doing something all the time. It was ok to just…be.
This is something I struggle with every day. I feel like every moment needs to be filled with some activity just to keep the chaos at bay. Maybe it’s my third trip to Target that week. Maybe it’s another playdate or a quick run to the supermarket. There’s a constant need to fill up time so there’s no room for life to unravel. But our best moments as a family are sometimes the moments that just happen. A ten minute pillow fight. Two hours of track building and playing with Thomas the Tank Engine trains. All five of us watching Monster Truck Jam on TV and yelling out each truck’s name. Those unstructured moments of just being a family. Those are the activities my kids will remember, not the trip to the store for more toothpaste.
Of course, there were more lessons I learned from him along the way: the head is the chimney of the body so always wear a hat, don’t go out with a wet head, and for goodness sakes, it’s 10 degrees outside – why aren’t you wearing socks!! He left us too soon for him to share these lessons directly with my boys, but I’m hoping that in my own way I’ll be able to teach them what I know now.
At the very least, I’ll let them know it’s ok to go out with duct tape on their pants.
“Oh very young
What will you leave us this time
You’re only dancing on this earth for a short while
And though your dreams may toss and turn you now
They will vanish away like your daddy’s best jeans
Denim Blue fading up to the sky
And though you want them to last forever
You know they never will
And the patches make the goodbye harder still” – Oh Very Young by Cat Stevens
Pancreatic cancer is one of the hardest cancers to detect with one of the lowest survival rates. To learn more, visit www.knowitfightitendit.com.
Alysia Butler is a stay at home mom to three boys, one of whom has autism spectrum disorder. She writes about that and other things at Try Defying Gravity and finally understands Twitter @trydefyinggrav.