I’ve briefly mentioned how amazing the special needs community is. When Evie was born I shied away from support groups and wasn’t on any social media (bar linked-in which as anyone knows isn’t proper social media 😉 ). I was determined to go this alone. That Evie was fine.
I didn’t realise that there was a myriad of support out there. And not just from other parents and families of children with Down’s Syndrome. A lot of the support out there is incredibly good, you just have to look (it invariably isn’t offered) and you have to want the help.
You see, you begin to realise as you step through this journey, that whilst Evie may not have exactly the same disability as another child, they do have lots in common. Perhaps their sensory issues are incredibly similar. And if the children aren’t similar, maybe their parents are – perhaps the fight that their parents may have for support or for schooling may be mirrored. Perhaps the internal battles that many parents of children with additional needs have, are often the same, regardless of what their child’s actual disability is. Perhaps they have the same incredible sense of humour 🙂
Finding someone to hold your hand, support you, guide you, check in on you, who really understands, a true friend….means more than you can imagine. I love this quote that a SN parent tagged me into –
Now Evie is a tinker, I know you’re surprised! People with Down’s Syndrome are so placid and loveable (NOT!)
This morning for example, once again (this is a thrice weekly event at least) she ran up the road, instead of climbing into the car as she was supposed to. Funny you think? When I say she ran down the road, I mean right down the middle of the road, regardless of any cars or danger that may be near. So what do I do? I place her 2 year old sister who had been in my arms, in the car and RUN. Now I DON’T DO running. As I run, I shout her name, to STOP, she laughs and continues to run! She only stops when I catch her, laughing all the while!
Usually when I want Evie to walk somewhere, she refuses.
She’s a joker my girl.
“You want me to walk mum? Nah!”
“You want me to get in the car and stay safe? Nah!”
“You want me to tell you what number comes after 3? Nah!”
“You want me to give you an apple? Nah, here’s a banana!”
And this is our life. Exasperating. Entertaining. Nerve-wracking. Hilarious. And often exhausting. I’ve found that if I tell most people this, they don’t get it. Some don’t care. Some do. Telling someone that this behaviour is the same as any child, doesn’t help. It’s not true for a start.
If I tell one of my lovely SN friends what’s happened, she instantly gets it. I’ve been able to express what kind of a day it’s been and feel better for it. I don’t get an “I’m so sorry” and a look of pity. I get a “The little nightmare, she’s a monkey, hahahaha!”. Then I get good straight advice. I like plain talking. As my mum would say, I call a spade, a spade. It’s the same theme as I’ve blogged about before. I don’t want pity. My life is actually pretty awesome. I want an outlet to vent freely and without fear of what anyone will think.
The best advice that I’ve ever been given is this:
My lovely friends allow vent to do this and I hope that I am able to do the same for them. Friendship means a great deal to me. The world of special needs is often isolating and scary. At meetings I put on my ‘lawyer mask’ and I brave the world. Often I don’t feel brave. I want to hide away from whatever nightmare form or meeting or appointment we have next. Having a friend to confess to, to talk freely is priceless.
So to my lovely friends, in ‘real’ life and online, thank you from the bottom of my not-so-cold heart. And to anyone who is such a friend for anyone else, you’re doing an awesome job.