Someone posted this on Facebook.
9 Ways You Can Help A Special Needs Parent
Some of it I like.
For example No. 1, No. 3 and No.8 and No.9.
Especially No. 8.
See My Child. I think Maria has eloquently put what I see too. My son.
It's true for some people disability equals uncomfortable conversation, awkwardness, not knowing what to say, and so better to ignore than to engage. Sometimes people don't see the child, they see the disability first. They don't see the person.
However I do understand the other side to this statement. As parents of children with special needs we can't stand and berate our friends or strangers because they may feel awkward. Before our lives change, I wasn't 100% comfortable with disability, I didn't understand. But I do now. And it's up to Zack and everyone who cares for him to allow others that distance, to allow others to ask questions and to educate those who may never experience what an absolute honour it is to care and love someone as brilliant as the Pants.
Everything is relative to the individual. It doesn't matter if you worry that your child may have a cold, it doesn't matter if you worry that your child isn't sitting yet, it's important to you and your world. And no it does not upset me to hear you share your stories of your children.
Recently we took Scarlett and Zack to a soft play area. You know, one of those squishy, sticky, padded cells. Basically somewhere Scarlett can fall over and Zack can slide, roll and drown in a sea of coloured balls.
A young couple came along with their baby girl, a couple of months younger than Scarlett, we got to chatting as you do, usual thing, ages, milestones blah blah. I told her about Zack and just said he had Cerebral Palsy. Stock answer usually. It would take me an hour to explain all his added extras.
When I say to someone he has Cerebral Palsy you usually get the ohhhhh polite nod and then silence. I usually change the conversation to ease their awkwardness rather than us stand their smiling at each other.
Not this time. This stranger, this lovely girl, asked me lots of questions about him. Asked why it happened. Asked if he liked his nursery. Asked if I still worked. Her other half was also interested. We spent the next half hour talking about Zack. Towards the end of the conversation she apologised for asking so many questions.
Sorry? Sorry? No you carry on, I love talking about him. I don't mind at all, it was so refreshing.
That young mummy was going back to college to train to become a nurse. I think she will be a very, very good nurse. Thank you soft play Mummy for taking the time to talk to me about my son.
This isn't my blog, it's Zack's. Zack arrived here seven weeks early, he had no heartbeat and wasn't breathing. He suffered catastrophic damage to his brain, he has cerebral palsy, problems with his hearing, vision and feeding. Our lives are both challenging and extraordinary. He is a gift. I hope that for whatever reason you find yourself reading this blog it can go some way to help those in the same situation and some way to remove the cloak that covers parenting a child with disabilities.
Thursday, 10 May 2012
Subscribe to:
Post Comments (Atom)
I want to alleviate the fear of death
The other day I caught up with the last Season of This is Us. It's been running for a while and is the story of three children and the o...
-
Sometimes I don't know what Zack has to complain about, I mean he has had a lovely week so far. Okay it didn't start off too well, ...
-
It's Zack's big op day tomorrow. He is oblivious to it all. Meanwhile I can't stop thinking about it. I have even written a list...
No comments:
Post a Comment