Appreciating the pit crew in special needs parenting
Before parenting children with special needs… driving alone
I know this statement will seem a bit counter-Christian. But sometimes I think all any of us are really trying to do is create mini kingdoms.
People need to rule. We need to be noticed. We crave praise. And we need others to notice that we can actually handle our lives.
Or at least, if I am honest, I do.
So we build little universes. Oh, we think that we live here on this big ball called earth, but actually, at least in America…
I think we live in our cars.
Think about it. We’re individuals. We don’t need help from others. Even as Christians, as people who are supposed to live in community and put others before ourselves, we still fight the urge to create the facade that we have it all together on our own. Most of the time we are unaware of it, sometimes we fight it, other times we seek it out. We drive on streets and avenues, highways and bypasses in our Hondas and SUVs like they are our world, and we are the center of it. Once in a while we pull up to another person’s universe and roll down the window for a chat, then quickly say our goodbyes and speed off again.
We fight the desire to rule our own little worlds.
But sometimes the pull to rule is just too hard.
Parenting children with special needs
Before the birth of my baby with Down syndrome, I was pretty successful at creating and functioning well in my own little universe. Baby, I could drive my car! I ruled. I was untouchable, safe. My life sped forward.
Then Polly was born, and right away, I found myself driving through the worst rainstorm of my life. I tried to move forward but my tires were flat, and the windshield wiper clogged up. I couldn’t see.
Strangers, others from parallel universes, started knocking on the windows of my life. Therapists, doctors, other special needs parents, prayer warriors, friends, and family all opened up doors and let themselves in. They pushed the roominess out of my life, making it hard for me to feel like I had any control of anything at all.
I didn’t want passengers.
I’m a mom.
I wanted to be able to do everything Polly needed myself.
The truth is that we need a pit crew
When you have a child with special needs, you realize quickly that there is no way you can keep driving alone.
When you are a parent to a child with special needs: Down syndrome, or autism, or cerebral palsy, or bipolar disorder, you realize that the passengers in your car, the people who have opened up your life (invited or uninvited) are vital to your family’s well-being.
You realize that maybe, just maybe, life is better with a car full of support.
Maybe this really was how life was meant to be; not just trusting and relying on yourself, but having a pit crew, ready to help you when you get a flat, passing you a cold drink, or helping you when you need to get out of the car quick.
Parenting a child with special needs forces you to share your life. It’s not always easy, but there are some really good things about living this way.
I’ve come to love the people who work in the pit of my life to keep our family moving along. Friends, our church, therapists, doctors, family, teachers.
And Jesus. I can’t forget Jesus. The one who was actually there all along, before the idea of children or the need of a pit crew crossed my mind. The creator of community, the ultimate member of my pit crew. Is it possible that through the challenges and joys of parenting, he continues to show me how much sweeter life can be when I’m not just trying to drive alone?
If it weren’t for my pit crew, I surely would have crashed by now.
Parents of kids with special needs? Who do you have in your pit crew? Take a moment today and let them know you appreciate them. And leave a message here telling us about it.
When my daughter was born, my husband and I didn’t have a pit crew. We prayed and over the 3 years of my daughter’s little life, our pit crew has grown to include: some of our extended family, our church family, my daughter’s medical team, two of my former coworkers, our parent support group and now, the staff at my daughter’s school. Each group serves our family on different levels and for different needs, but it took us a while to learn that we cannot care for our daughter alone. It also was humbling to ask for AND accept all types of help. Kudos and blessings to Team Mattison! We love you all!
About, “pit crews,” I have a child that is blind in his left eye, deaf in his right ear, mentally handicapped, non-verbal, hyperactive, has autistic tendencies, has seizures, and was born with only one kidney, causes unknown.
When he was 2 years old someone reported me with child abuse saying he wasn’t eating or sleeping well. They were lies, as he has never had a eating or sleeping problem.
The folks at DSS were very nice, saying most of the time when a parent is falsely accused it is because of something said that has been misunderstood or someone is jealous of the parent that has been falsely accused.
Our son’s doctor said I, and all parents of special needs children/adults need a medal of honor, not a visit from DSS.
He also said parents of special needs children/adults are more likely to get falsely accused of child/adult abuse than the general population.
Thought I would share this with you.
Wow. I can’t believe this story. Hugs to you, Kristy.
Kristy I have a child with many of the same diagnosis as your son OM Word I have never heard from anyone who had as many as we have . Our special one is 16 not potty trained, ADHD, bi polar……yada yada yada and one kidney! I feel so amazed just to read your post—it is alot like ME! Thanks for writing, made my day Blessings, Sheila Temple
author, “Chinese Take Out-An Adoption Memoir”
We have NO ONE. No one. No family, no friends.
Ellie- So many of us started out with no one on our “pit crews.” We had to seek people out and make connections. I struck up conversations with people in the waiting room during my son’s therapy and with the other moms waiting to pick up their kids from preschool. If you’re on Facebook we’d love for you to join our support groups – https://specialneedsparenting.net/encouragement-groups/
Ellie, I am going to pray that God will provide a pit crew for you. And I agree with Sandra, seek it out. None of us can do this alone.
We feel your pain, we have no one either, we have family but no one interested in helping or even caring about what we go through. I had a daughter born with spina bifida, no one there to care or help. She passed. Now we adopted 2 special needs children and our bio kids don’t want anything to do with them or us really, they are all missing out on two very special people. YOU CAN DO IT!! Just keep looking at your child and know that you are bless to have that child and your child is blessed to have you
Clearly, you have been listening in on my phone calls and a fly on the wall in my house lately! Girl, as I’m launching a book and launching a daughter into middle school, I am absolutely thrilled I’ve got a pit crew with me. I need them in ways I am still figuring out every day. Thanks for the reminder to email my team and thank them for being an amazing team!
Amen! Prayers for this crazy time, friend.