As a first time mom of a daughter with Cerebral Palsy, I didn’t spend much time at playdates with other kids Jaxlee’s age. I preferred to hang out with my friends who didn’t have kids or friends whose kids were significantly older than mine.
Looking back, I realize this was an act of protection and self-preservation. It was too painful for me to watch other friends’ kids playing next to my child who was significantly developmentally delayed. I couldn’t help but compare my child with theirs, and inevitably I would be devastated by the stark reality that my kid was nothing like the other kids her age, or even close to her age.
I used to find myself weary of listening to other moms complain about how their kid “just never stops eating” or how their kid “just runs all over the place and is sooooo busy”, or perhaps even worse– how their child doesn’t stop talking.
I found myself wishing I had these problems because this was my reality:
My kid hardly eats, so much so that she has a feeding tube.
My kid wants to move and run and play but can’t because her muscles are weak and don’t function like other kids.
My kid has no verbal language and I am left reading her body language and guessing what she wants.
So I just did my best to avoid these types of situations all together. I remember feeling isolated and thinking, this is not how I pictured motherhood to be. After a lot of growth, time, and healing, I can honestly say I am in such a different place.
These circumstances can put a barrier between moms of special needs children and moms of typically developing children. I am a mom of both and I would love to help give some ideas on how to bridge the gap and break down these barriers.
Here are a few ways that my friends of typically developing kiddos helped me– and how you can support your friends with special needs kids.
Ask questions: Ask about our diagnosis, appointments, therapies. Inquiring about my special needs child shows me you are making an effort to have a better understanding of our situation.
Allow your kid to ask questions: Even if it’s in-front of my special needs child, let your kid ask questions. This gives your child permission to learn and have a better understanding of my child (cultivates compassion and inclusion)
Offer to help: What can I grab? What do you need? What is something I can do? What is easiest for you?
Avoid venting: Save your “venting” parenting moments for your friends who have typically developing children.
Show up: When my child has a special event or fundraiser, show up and show your support.
Listen: Sometimes we just need a shoulder to cry on. Not someone to fix our problems, or pretend they understand but just a listening ear and a genuine hug.
Initiate friendships between our kids: No, I’m not asking you to make your kid be best friends with my kid, but in appropriate situations encourage your kid to interact and exchange with mine.
Being in the special needs community is beautiful. We get and support each other. We are each other’s life line when a new stage of life throws us for a loop, or when we’re just having a hard day and our patience runs thin.
But just like our special needs kids, we want and need our larger community. Being a first time mom and a mom to a special needs child was isolating and overwhelming. I needed all the encouragement I could get.
I’m grateful for the ways our friends and family have shown up and supported us; they helped mend the pain that came with a CP diagnosis. They loved and cared for Jaxlee in ways that moved me to tears.
I want this for every special needs child and for every mom and dad of a special needs child. My hope is that by sharing a bit of our story, we’ll learn how to show up for each other and make a more compassionate, inclusive community.
P.S. If you are a mama how just got the hard news that your child has or will have special needs, I wrote this letter for you.