The day I found out my son, Benny would be born with Down syndrome, I was thrust into this beautiful club of parents that have a child with special needs. We are a fierce bunch of warriors that from day one learn how to be amazing advocates for our children. We walk into doctor appointments, therapy appointment, IEP meetings and more with enough research to earn an honorary medical or teaching degree, and always have our dukes up ready to fight for our kids. If someone in your mom group is part of this club, then you know what I mean. We are a tough crew!
In the same breath, because we have to be so tough so often, we need people in our lives that we can relax around. We desperately need safe havens where we don’t have to advocate, educate, or research. Motherhood is so isolating at times, and being a special needs mom adds even more layers of that. I know that for me, even though all my friends had kids at the same time, I feel like I am watching them parent through a mirror where I can see them but they can’t see me. I am constantly afraid that they feel inconvenienced by me. I feel like they don’t know how to talk to me sometimes because they just don’t know how to relate to me. To be fair, I sometimes feel like I can’t relate to them.
I wanted to create a conversation to help us break down those walls, so on behalf of all the other parents in “The Club” here is my ask to all the parents we are friends with. This is a plea to our people, our closest friends, about how to help us find our safe havens with you. You are important to us, and we know we are important to you, so here are a few ways we might begin to shatter that mirror.
- Educate yourselves and your kids about what makes our children special.
“Emersyn communicates through sign language, so learning sign language yourself would be amazing. This is my new normal, and while I don’t expect it, I appreciate it when others can communicate with her too.” – Chelsey
“Learn how to use any special equipment my child uses. Ask to be trained on it or to join me when I get trained on feeding tubes, pumps, etc. Then maybe, just maybe, I’d have someone I fully trust with my kiddo for the rare date night.” – Jessi
“I would love a friend to know about some of the activities we work on in therapies and offer to work every once in a while with our child because so often our kids work better with others and it could really give me a break where I know needs are still being met!” – Katie
- Include our children as best you can.
“I can’t tell you how much it meant to me when my best friend made her son’s entirebirthday party wheat free. Dax was able to run around, eat all the treats with all the other kids, and we didn’t have a single meltdown the entire day. The snacks I packed stayed hidden away, and Dax was able to feel like he was no different. I was actually able to relax and enjoy some time with my friends too!” – Molly
“Late last fall I took Angel over to my best friend’s house. Her husband was working on their porch. I smiled and said, ‘Beth got ya remodeling something else on the house, huh?’. He replied, ‘Just adding a ramp so Angel’s wheelchair can get in the house easier. She’s getting big and I’m gonna need her help this winter!’ I may or may not have sobbed my entire way home that day.” – Lucy
- Advocate For Our Child
“In high school, it was a law that if I didn’t like someone, my best friend didn’t like them either. That was girl code. Best friend mom code should work the same way. If I’m not there and my child needs a voice, I expect you to step right up!” – Jill
- Don’t Apologize For Being You
“Don’t be afraid to talk about your own parenting challenges or your children’s challenges. You might find our experiences are just as alike as they are different.” – Christiana
“Even though it’s hard sometimes since my son takes longer to do something or reach a milestone, I still love celebrating with my friends when their kids do something awesome! Essentially, talk to us. About the good stuff AND the bad stuff.” – Stephanie
Are you a special needs mama? What would you add to our list?
Photo Credits go to Sara Demick from www.sarademickphotography.com
Hi I’m from London, we have 6 Kidd’s our last bundle of joy has DS. Reuben is now 12. I’d love to join your group even from across the ocean.