When Max was diagnosed with Epilepsy at almost 4 months old, I felt like the only person in the world dealing with something like that. We spent the next year trying to figure out where we fit in. He wasn’t Autistic, so that community wasn’t the right fit. He wasn’t “typical” so those new mom groups didn’t feel right. He had a vision impairment, but wasn’t blind so even the classes at the local school for blind children didn’t seem like the right place for us. There weren’t any blogs or chat rooms for parents of kids with Infantile Spasms so I felt kind of lost. I felt like I had to find my way and see where Max and I could fit in a feel comfortable (I say me because I was home with him at that time).
The one place I took comfort was in a playgroup run by our Early Intervention team. There, all the kids had varying degrees of need and all the parents were in the same boat. We knew not to ask if the kids were crawling or talking yet, because we knew that some never would. We all took joy in the little (well, big to us) things like a child learning a new sign language sign or getting through a medical procedure with ease.
As Max gets older, I’m finding my “village”, my community online. The main reason I wanted to write for CT Working Moms is because I don’t know many parents (I know only one in real life) who have a child with special needs and still work full time. I wanted to share my stories and hope they resonate with a parent who may be experiencing the same things as me.
I’ve done things online I’d never do in real life, like reach out to a blog commenter who said her son had just been diagnosed with epilepsy just to tell her I knew what she was going through and I was here if she wanted to talk. I’ve responded to a friend’s Tweet asking him to stop using the R-word and telling him why it was hurtful to me. I’ve asked someone I barely know about doctors and therapists and reached out for support all because she wrote the words “my son sounds just like yours” in a Facebook message. Hearing those words from someone has meant more to me than almost anything else.
As parents, we know our children are not the same as everyone else. They each have their own spark, their own drive. But sometimes, when your child is different from everyone else for other reasons, it’s nice to hear that they are actually quite similar to another child. That parent then becomes your go-to. The one, dare I say friend, that you ask for advice and support even though you may not have ever met in real life.
So I guess I’m trying to encourage you to take a risk and reach out to someone you connect with even if it’s outside of your comfort zone. Even if it’s just an anonymous commenter on a blog you read or a friend of a Facebook friend. You may impact someone in ways you can’t even imagine.
4 thoughts on “My Special Needs Community”
Bravo!!! Continued success connecting to other parents. My 7 year-old son has ADD, Attention Defecit Disorder and asthma along with severe peanut allergies. It is a challenge enough to have play groups with activities on weeknights and weekends and not only 10 a.m. weekdays, let alone meet families with special needs. Good luck and continue to advocate for your son.
I Love this post! People reaching out and connecting doesn’t happen enough and you are changing that! Bravo Kris-Ann!
Beautiful post. Though our specifics are different, I have also found a wonderful online community of support that I value so much.
Lovely post Kris-Ann. Even though I can’t completely understand what you go through, please know I’m here for you no matter what. I’m so glad you have your own little village of support – it’s so important