Are you a mum of someone special?
Are you outraged by the title of this post?
Did you click through thinking: “Hey lady watch it. I don’t have greasy hair. Au contraire. My hair is gorgeous. Thank you very much.”
Or are you someone that clicked through thinking: “Hell yes. The moaning. For the love of all that is holy. The moaning out of these people.”
Or are you just eating your toast and thought I’ll have a wee read because Netflix hasn’t loaded yet?
Obviously, I don’t think that parents of children with special needs are miserable moaners with greasy hair. Well not always (but if you could see the actual state of me now you might concede the post title has a point).
I do wonder though if occasionally this is the overriding impression of us. You know by *whispers behind hand* non-special needs type folk.
Are we deemed a bit hard work to be around because our children are harder work?
I am guessing all of us have moments when we have been sharing really interesting information about SEN reform, social worker assessment reports or a new drug with our nearest and dearest and we have watched their eyes glaze over.
At times I do wonder if anyone is thinking: “Oh please just shut up about your kid.”
Perhaps I am doing a huge disservice to my family and friends who are nothing but supportive and kind about my son, who is globally delayed and medically complex. But if sometimes I find the whole situation we have been thrust into tedious beyond tears – what about them?
I think now and again we are in danger of over egging our puddings. Moaning our way through the mayhem. Maybe putting too much emphasis on the “special” in special needs.
As for the greasy hair. I mean that in the metaphorical sense. In the way that, because of our offspring, we are sometimes viewed to be a bit downtrodden, frumpy, burdened, the underdog, the one (gasp) who is not much fun to be around.
In fact do you think that sometimes we annoy the hell out of people?
Here are just a few examples.
We make people tongue-tied
I remember when my friend’s dad died and for weeks after I found I had some crazy form of death Tourette’s. I’d say all manner of stupid things.
I nearly died when I heard the news.
How are you doing? You look like death.
It’s dead sad.
It is killing me that I don’t know what to do to help.
I was winning at being a mate. A few years later when my own father passed away I found myself giggling when people did the same. Sometimes people don’t know what to say and it comes out wrong. No matter how well-intentioned.
I find this happens a lot with special needs terminology. A friend was saying she looked like an imbecile in a photograph and then looked guiltily at me. It just means fool – I am good with that. I have to check my own choice of words a lot of the time – half of this stuff we grew up with. Granted, there are some horrible words out there that make me want to weep now, but there are loads of benign phrases too. Most of us special needs parents don’t get too hung up on this stuff. You doofus.
We often kill the joke
I have a bit of a dark sense of humour and can often see the funny side of this life we lead. Whether that is sharing a giggle with the husband over an explosive nappy or joking about getting a good parking spot with the Blue Badge. Sometimes this gallows humour does not translate so well.
Flicking through pics of Gabe recently with my mum I stopped at one and quipped: “does he look disabled in this picture?” My Mum was horrified. “No, no. Why would you even say that?”
“Erm… because he is disabled and he’s strapped into a standing frame and playing with a switch toy.”
It was a joke. A bad one granted. It wasn’t even original as I’d stolen it off one of my special needs mum mates. People don’t think it is okay to laugh at our kids. But all kids are funny sometimes. Even ones like ours.
Another time a group of us were laughing at a fellow school mum’s shoes (she started it). Taking the mick and being mock mean to each other.
“I’ve got new frumpy mum shoes. What do you think?”
“The boating club called and asked for their canoes back” my mate said. Heehee.
“Did you steal them off your nan?” One of us said. Hoho.
“It takes real skill to be this stylish at the school gate,” I’d added thinking I’d like a pair myself.
“They look like special shoes.” another said grinning.
“Arrhh that’s well slack. My boy wears them.” I threw back giggling.
I had been jesting but the laughter stopped and the topic was swiftly changed. Even putting on Gabriel’s tiny built up boots and doing a funny dance with bonce boppers on my head wouldn’t have got the joke back on track.
Talk about sucking the fun out of a situation hey.
Our lives are quite annoying (and frustrating)
I don’t really want to know every sentence of a document my friend is putting together for work or a run down of each brick placement of her house renovation project. But I am definitely interested in knowing if she is doing well and is on track for a promotion. Or whether the building work is going so badly that it is totally stressing her out and she’s not sleeping. I guess that would be the same for our lives. We don’t need to drown people in detail (no matter how tempted we are). Of course our friends will be bothered if something is getting us down or equally we are dancing on air because our non-verbal child muttered a sort of word.
But everyone has miniature and frustrations.
We need to remember that sometimes.
We can’t just expect to be able to emotionally spew on all and sundry when ever we like. It doesn’t work like that. Otherwise we run the risk of becoming the person people want to avoid on a cold Monday morning when they are feeling fed up. We become that heart sink woman they have to sit next to at the Christmas dinner who is going to rant on about the injustice of the election results (cough).
Imagine that. They might then forget how much fun we actually are. How we are the best dancers and singers. How we have loads of juicy gossip about Hollywood actors. And that we are pretty stupendous for reasons other than raising a child with additional needs.
|Me being a miserable moaner.|
Things don’t always go to plan
I am always late. This is not always Gabriel’s fault. I was late for stuff before he turned our lives upside down. I am just not mad on rush. It stresses me out. And I then get hot narks (narks that make me hot). I am also rubbish at returning calls and texts. More often than not for the simple reason that I am a lazy cow. So you see my bad bits were always there and he just exacerbates them. I have no doubt that this annoys the crap out of my mates. There was a meme going around Facebook that said “I replied to your text in my head”. I thought I’d try it on one of my friends. She didn’t buy it and looked at me like she wanted to punch me in my forgetful head.
We see your misery and raise it
You are having a bad day (a really feffing bad day) and all you want to do is moan about it. You know some of your gripes are pretty irrational, but all together they have become A REAL BIG DEAL. You need to vent. I am with you sister. Let’s work it out. Go…
Friend: OMG my child will only eat cheese sandwiches. And fish fingers. Nothing else. Bit of chicken and peas. It is crazy. Sweets obviously. And crisps. It is starting to stress me out. What can I do?
Me: Jeez. Tell me about it – Gabe is just doing the baby mush. Thinking about tube feeding now actually. Then we have that test soon to see if he is like kinda allergic to all food in general. What a drag.
Friend: I am so worried about little Jimmy. He doesn’t run as fast as other kids. Not sure if it’s because he doesn’t like running or there is something wrong. I’d love him to be more sporty.
Me: I know. I had a dream last night that Gabe could walk. It was epic. He was walking all around the park. But then I woke up and he was still in his wheelchair. Bummer.
Friend: Lilly-Jo just won’t do anything for herself – what is she going to be like when she is older and at university. She’ll burn an egg and wear the same clothes for a month.
Me: Haha. I was thinking the same about Gabe. About how we’ll still be taking him to see Santa when he is 24 and living in his group home. Hahaha.
So special needs mums then?
Annoying? Probably (aren’t we all).
Miserable moaners? Sometimes.
Greasy hair (metaphoric or not)? Perhaps too often in my case.
Same people we always were? Mostly.
Still like a good laugh: Hell yes.
Good at jokes? … erm… working on it.