I’m only just beginning to discover how lonely it is being a special needs Mum. And I know, I know you’re all here, and we’re not alone through this. So many of my Mama social groups have typical kids, and I love them. I think they are beautiful, and so clever and just, so amazing. But that doesn’t make it any easier to bear when I can see they’re developing skills Kai might not. That all their babies are holding their heads up by themselves, exploring the world with their mouths, physically able to grasp things, and bring them up to their face, to make eye contact and respond, to be able to bear weight through their legs… I adore these little babies, but every time time I see them there’s a grieving process for Kai. Every time, a little unintentional dagger to the heart.
And it’s not that I compare our kids, because I can’t. Our beautiful little NKH baby is doing things his own way, at his own speed. It’s that I’m still grieving this whole situation. That we’ll never get the typical version, that there is a lot of pain and goodtimes and heartbreak ahead for us and Kai. I’m of two minds – do I plunge in and socialise as much with these typical babies as I can, effectively ripping the typical comparison band aid off and at the same time normalising disability for a few people, or do I quietly step back (my current strategy, having just been at hospice).
I had a look for Special Needs parents groups in my area. I found a lot for autism, and ADHD, and down syndrome. Able bodied special needs. There was nothing for severely disabled special needs. Or rather, nothing that a quick google/facebook search threw up. I’m so disheartened. Where are the parents who get tubes and feeding pumps and wheelchairs and drool? The parents of the nonverbal and non ambulatory? Where do they hang out?
I think we mostly hide. Our days are so chaotic, and most days I feel like I’m only just holding it together, so most days we hide. I figure the special needs families in our community are hiding too.
<3 for all the comments and suggestions. Yes, there are services and we’re pretty aware of whats around us. The problem with services is that they are at a fixed time once a week – if Kai’s ill or we have other therapy on, we’re out of luck. Example: We’ve had a standing appointment for our local Small Steps for the last few months, and each time our appointment comes up Kai isn’t doing well or we’ve had more important appointments, so we’ve missed it.
Here is what I’d like: a relaxed group of local people who meet irregularly and informally outside of any services. Like the amazing-ness of our NCT social circle, but special needs.