Things to never say to a special needs mum.

English: A "puzzle" ribbon to promot...

 The “puzzle” ribbon, worn to promote Autism and Aspergers Awareness. (Photo credit: Wikipedia)

Awareness of Autism and Aspergers is growing, people are starting to understand and appreciate a little more about the workings of an autistic mind, television characters like Sheldon Cooper (Big Bang Theory) Abed Nadir (Community, also my favourite) or even Brick Heck (The Middle) are all bringing ASD (Autism Spectrum Disorder) to the forefront of popular culture and it’s helping, it really is.

But there are still idiots, there will always be idiots. As a mum of an Aspergers kid I hear a lot of crap, I thought maybe if I list the most popular you could read this and one day when you are having a conversation with somebody who deals with ASD and you hear the words line up in your brain, you might stop and think about what I said and keep that particular line to yourself.

He looks so normal doesn’t he.

You are, of course, totally right. He looks completely normal. That’s because when he was born I went to great expense and trouble to remove his tail, 3rd eye, horns and that birthmark that says I have aspergers from across his forehead.

Of course he looks ‘normal’ what on earth would you expect him to look like? He has Aspergers, not 5 arms. Idiot.

All kids have tantrums.

They do, I can’t dispute that. But I have to wonder, do you know the difference between a tantrum and a meltdown?  Have you stood in your garden trying to make small talk with your neighbours while your son rips your house apart inside because you’ve missed that golden window between angry and total inability to control himself leaving the only safe option for you and your baby to leave the house?

Have you had to lie across your kid to try and calm them down with the weight of your body and then spent several hours afterwards on the comedown? No? If your child wants a toy, screams and shouts for 5 minutes after you said no embarrassing you in the shop but then gives up and gets distracted by something else, well then that’s a tantrum and I honestly envy you.

He needs a slap, that’ll take it out of him.

Believe me, if slapping somebody took it out of them I would have slapped the stupid out of you long before you opened your mouth.  I probably would have enjoyed it to.

I heard you can get a vaccination/tablet  for that now.

Really?? Where? Holy fuck I need to tell every ASD mother out there, we need to fall on this miracle cure. Tell me, what the fuck am I doing spending every day attending appointments for social skills or anger management. Why am I wasting my time on psychologist’s and fighting with teachers for special equipment to make my life and his easier. Did you hear that everybody?? There’s a needle to fix it all, praise be!

Twat.

You were given your child because the universe knew you could cope.

I’m sorry, this may be controversial. I hear this a lot both from people without special needs kids and people with. I know that for some this is a comfort to hear. To me, this is rubbish. At no point do I consider myself some kind of super mum, a mum so amazing and so much better than anybody else that a massive universal force looked down on me and said, well she’s awesome, let’s give her next child Aspergers and see how she does eh.

Because the truth is universe, I don’t do so well. Sure I fight his corner, I’m his biggest voice out there in the big wide world and his teachers probably hate me, but I do this because I have to. I have no choice. If I don’t do this then life gets harder for everybody in the house not just him. We all suffer.  I’m big and brave and scary. Then I go home and I cry. I cry because I’m exhausted, I cry because I can never fix things for him, because this is his life, I cry because I just cannot take any more. I wonder sometimes what life would be like without the huge spectre of Aspergers always there, always over our heads overshadowing everything we do. From grocery shopping to holidays to where things are placed around the house or how we sit at the dinner table, Aspergers has the first and final say and sometimes I hate it. I resent it.

So, no, universe. No. I don’t think he’s here because I’m a super mum who can cope. I think I’m just a normal mum who has more to deal with and breaks down a lot more frequently than people realise and your false sympathies do not lie well with me. I would much rather hear somebody say, hey having a kid with additional needs must really suck for you sometimes but I really think you are doing your best. Have some cake.

 

So that’s that thing where he can’t look me in the eye? No big deal.

Sure, that’s all it is. You are totally right. Now excuse me I am just off to remove every grey item in my house because he can’t stand the sight of the colour, I need to rearrange the cutlery draw because he’s freaking out that his brothers fork touched his, I also have to ensure every single clock tells the right time, if they are a couple of minutes out between rooms he gets very anxious and that can bring on a meltdown if you let it carry on. I have to watch what I say at all times so that he doesn’t get confused due to him taking everything literally, I once said I had green fingers from gardening and he started to cry thinking there was something horribly wrong with me. I also need to once again remind his teachers to let him go to his quiet area when he gets overwhelmed and to stop telling him he will get over it then it’s off to stock up on melatonin to help him sleep, without it he doesn’t sleep leading to him crying with frustration at 3am and prone to outbursts the next day. Once I have done all of this and a million and one other things I do every day to make his life easier I’m going to come back and look you in the eye, then I’m going to punch you in the face.

 

There are so many other stupid things, I could be here for days and this could turn in to a book. So I shall end it here, feel free to add any others you think should make it to the list. In the meantime I want to say to all you mums dealing with ASD kids or any other kind of extra needs, sometimes it sucks but I truly believe you are doing your best, have some cake x

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22 thoughts on “Things to never say to a special needs mum.

  1. Oh I so feel your pain! And would like to add one more, along the lines of ‘he looks normal’.

    “Oh, he doesn’t have Autism! The boy down the street, now HE has Autism”.

    You’re right, all the doctors are wrong, and you are right. Even though you spend just a few hours with him a few times a year – you’re absolutely right, he doesn’t have ASD….

    Comes from well-intentioned family members to boot.

    We are doing our best, let’s have cake together! 🙂

  2. Thanks for the cake, and… ‘oh, she’s so pretty, don’t you think ASD kids are always gorgeous?’ Like they are given amazingly good looks to compensate for their disability. And actually, people with ASD can be gorgeous, or they can be not so pretty, just like anyone else.

    ‘Make her wait, she has to just get used to it.’ Will she? Cos sometimes we have to wait, and sometimes we don’t, so there can’t be a solid precedent set here. Standing in a queue, surrounded by people, is a sensory overload situation, and worse still, there is no way of knowing that it will be over soon. Imagine you’ve been put in a tiny room where you feel claustrophobic. Then add some flashing lights and lots of confusing noise. The door is locked and you have no idea when that door will be opened, or even if it will be. Your head spins, you panic, you want to get out, but you can’t. OK, you’ve just imagined a fraction of what it’s like for an autistic person to be in sensory overload…

    I could also go on forever…

  3. Thanks for sharing this.

    As a mother of two healthy kids, I remember being angry or exhausted, but a good night’s sleep and a new morning made it all go away.

    I only know some parents with ASK kids, but I have always been wondering… how do you manage to keep your love for them going?

    Possibly an idea for a blog post…?

    • I won’t lie it’s hard sometimes but no matter how exhausted I get, how angry I am sometimes or how close I am to my breaking point I really don’t think I could ever stop loving him. He’s my boy. Being his mum is hard work but in between there are amazing rewards, Aspergers comes with brutal honesty, they say exactly what is in their head and they mean it so when I put him to bed and he says I love you mum then I can’t doubt for a single second that he means that and that makes it ok. Also, large amounts of wine once he is finally asleep helps 😉

      • I see one good point which helps you manage – you have a good sense of humor! Good for you.

        I’ve said good three times in one statement. Have some wine on me.

    • The same way any parent does after a difficult episode. You never stop loving your child, no matter what, and it’s no different for parents of disabled kids. It is exhausting and stressful, and the hard times are really hard, but the love never goes away. It’s what keeps you getting out of bed, it’s what keeps you fighting for their needs, it’s what stops you getting the little blighters adopted when they have pushed you to the limit. That love that bonds you to your child never goes away.

      • Hi Mandy, I had meant my question in a positive way, such as how to stay motivated, whether hoping for better days or improvement, etc.

        There was no questioning of loving your child, more like… how to keep up the strength.

        I hope it was not misunderstood.

      • Ah well, it’s not easy to cope with a child who has complex and demanding needs when you are exhausted, you need breaks, you need support. Sadly, this support is becoming harder and harder to get these days, thanks to budget cuts. I’m seeing more and more families hitting crisis point and less and less resources out there to help them. It’s a horrible situation, and I can see more parents committing suicide and taking their child with them tbh.

  4. Hi. I dont personally have a special needs kid. Just a normal very active, demanding and hyper toddler, a lovingly annoying tween and a six month old baby….and my nerves are wracked to the point of madness. But then I read posts like yours and feel like I cant even start to imagine what your day to day life is like. My hat off to you. Also, I totally get your metaphor of trying to nail jelly to a tree. Glad to be following you, and your rants and your swearing!

    • Hi Orana! Honestly I don’t think it matters if you have special needs kids or non special needs ( I have both) I think at the end of every day we all sit there in stunned silence for a minute and wonder what the hell just happened 😀 Nice to have you here.

  5. Great post! My son is special needs, but not autistic. I get a lot of “why don’t you do this {insert something I thought of 3 years ago}” or “he’ll be fine” or “did you know he was like this when you were pregnant?”. Yawn. Anyway, here’s my blog if you fancy a read. I haven’t updated it for ages, but will today 😉 http://dearluca.wordpress.com/

    • I was venting quite a bit of frustration here! But yes, the whole ‘why don’t you try this, that will fix him,’ that really gets me cross! Thank you for stopping by, I know what you mean about not updating I am very lax here!

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