Five Things You Should NEVER Say to a Mother of a Special Needs Child!

Handicap sign

I know the comments you are about to see are well-meaning, but quite frankly, they’re patronising, and insensitive, at best. We mothers of special needs kids get sick of hearing them. We don’t want you to treat us differently, and say what you think are nice things; that only makes you feel better, not us. All we need are the same common courtesies you give everyone else; a smile, a ‘Good morning!’, a comment on the day’s weather…

1. I don’t know how you do it.

You could also include here ‘I couldn’t do it.’ and ‘You’re so brave.‘ We hear these a lot. You make it sound like it is some kind of choice the mother makes. The fact of the matter is, your child is born, the discovery and diagnosis is made (if you’re lucky), and then you go home. You have to get on with it. No-one can do it for you. There’s no bravery about it, no choice. You can’t give the faulty child back and exchange for another more perfect one. You get what you’re given. Don’t get me wrong; it’s not easy. Some mornings I get up, reach for the medicine cupboard and think to myself, “I can’t do this today.” I can’t describe that weariness, can’t put it into words, (and as you know, words are what I do). But somehow, I keep going, because the consequences otherwise are too terrible to consider. Before I had Carys, I thought having a special needs child only happened to other people. I never imagined it could happen to me, and I never thought I would be able to ‘do it’. But ‘it’ happened, and I can. We all can. You never know what you are capable of until ‘it’ happens to you.

2. Special kids are only given to special parents.

Excuse me while I puke! Does that include all the special brothers, sisters, grandparents, aunts, uncles etc who also didn’t choose to have this child born with its ‘special’ disabilities? There’s nothing special about any of us. We were all just minding our own business, looking forward to this lovely little new arrival entering our lives. We weren’t expecting the explosion that came with it! Perhaps ‘strong’ would be a better word, or ‘adaptable’. We all learn to cope with what life throws at us, don’t we? It’s part of being human.

3. I understand how you feel.

Actually, no you don’t. Not unless you have been there, or are going through a similar experience, so don’t pretend you do. It undermines everything you might say or do afterwards.

4. She’s handicapped/retarded.

In sporting terms, a handicap refers to your average performance being less than the norm, or expected. That implies that the disabled child must be judged against so-called ‘normal’ children, in order to be found less than average, or expected. How can such a comparison have any meaning? Retard actually means to slow down, or impede the progress of something. It is also used to refer to the disabled, and thereby as an insult to those who are considered stupid or dumb. I can honestly say that I have never met a disabled child who was stupid or dumb! Child-like, innocent, with limited understanding of the world around them, yes, but stupid or dumb, definitely not. So please don’t use these terms, and please educate others you hear using them.

Incidentally, I still hear people referring to Down’s as Mongols! And why do we use the word ‘special’ to refer to children with disabilities? Are only children with syndromes special? Try explaining that to a curious, upset five-year old.

5. What’s wrong with her?

There are many answers which spring to mind when asked this question, none of them repeatable here, lol! At the end of the day, I will happily answers anyone’s genuine curiosity and interest. I want people to know about Carys’s syndrome. the more people who know about it, the fewer people might have to go through what I have been through as a parent, in the future. The more people know about what living with disability is like, the more chance disabled people will have of being accepted in society, instead of being mocked, despised, feared. It’s already happening, but it’s a long, slow process. When I was a child, I was afraid of the local Down’s Syndrome boy; disabled children, and adults were parcelled off into special schools and institutes, and we never saw them. Nowadays, they may still have to go to a special needs school, but they are out and about every day in society, and people are no longer afraid, so that is definitely progress. But we still have to get over the stigma attached to disability. So I will talk about Carys to anyone who wants to know. Beware, though; don’t ask if you don’t really want to know. You may have just opened the flood gates!

But I no longer feel compelled to explain her to anyone who asks about her. That’s quite a personal progress within me. And as for what’s wrong with her, do you know what my answer is to that?

NOTHING.

Nothing is wrong with her. My daughter is perfect in just about every way you can think of. That’s not just because I’m her mum. It’s because she has more love inside her than you would think is humanly possible. She treats everyone with that same love and respect, regardless of whether they mock her/stare at her/love her in return. She is  always happy, unless she is ill, or she has to do physiotherapy (hehe!) or we take her out for the day when all she wants to do is stay at home and watch Peppa Pig on TV! She never slaps/bites/pulls hair or shows any aggression to anyone, like other ‘normal’ children. She never does anything naughty or hurtful to anyone. I see her bring out the best in everyone who take that extra little bit of time and effort to get to know her. She teaches me something new every day. She puts my life into perspective.

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8 thoughts on “Five Things You Should NEVER Say to a Mother of a Special Needs Child!

  1. Wonderful post, Ali! Many of these could also apply to what not to say to a person with a disability, as well. One important point is to not speak about the person as if she is not there, “What does she want to eat?” but address her directly (whenever that is possible.) We are often idealized and seen as heroes for ridiculous stuff “You’re so brave, you get up and leave your house everyday,” or “You’re such an inspiration for getting into (insert college.)” Seriously? Or we are treated like burdens, charity cases, or throwaways. Neither perspective allows for our being human. Also, my mother told me that when I was young many well meaning people she had never met would give her unsolicited advice on how to parent me better. That’s right out, guys! Finally I can’t agree more about the insidiousness of using “special” or “exceptional” to describe people with disabilities. When I was ten I got a “Yes i Can” award from the Council for Exceptional Children, and had no idea how, out of all the kids in California, I was the most exceptional. I went to school and did my homework and had no nighttime career as the town’s child catgirl grabbing five-year-olds out of burning buildings or saving them from drowning in raging rivers. When at 28 I realized “exceptional” referred to my blindness and I was given an honor I neither deserved nor was bettered by, I cried. It would have been less insulting to never establish such an award to begin with. Conditional achievement is like conditional love: it’s destructive and eats away at a person’s identity. It undermines and minimizes any actual thing they might be proud of, it lends credence to the devaluing of a person’s worth either by others or herself. These terms normal, exceptional, they disguise the real reason we are here. Who wants to be normal or even exceptional if they could be fully themselves? We aren’t here to be normal. We’re here to be who we are.

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    1. Hi Éilis…what a powerful passionate heart felt comment! You should be writing this on your blog! You are so right and you say it beautifully. Awards should not be given for false reasons, but it happens all the time in all sorts of contexts…think of the Oscars and Book Awards etc Often these performances are no more exceptional than the next persons. I remember having a conversation with Cai when he was little about why the girl in his playschool was special when she went around hitting all the other kids and pulling their hair…he interpreted what the teacher had said as it was Ok for her to do bad things because she was ‘special’. He wanted to know why was he not special? The girl had special needs. The thing about parenting advice…yes, it happens to me all the time. Yesterday I popped out to the shop. It was quite a warm day, I had my flip flops on, I didnt want to force her little feet into heavy splints and boots when she wouldnt even be walking, so she was bare foot. A woman came up and said to her, but really to me, “Oh aren’t your feet cold?” I could hear the unspoken ‘You poor neglected child!’

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      1. You know I might just take you up on it and write a post on my thoughts. I’ll definitely have to think on it a bit more first, though. 🙂 Ugggghhhh, what an obnoxious as well as passive aggressive thing for that person to say to you about your daughter! It’s bad enough that she was so presumptuous, and then not to have the courage to address you directly with it. Probably she had some inkling of what you at least wished you could say to her if she had. 🙂 When I was three I was with my mom walking down the street eating an ice cream cone, and (she says as I can’t remember) that someone yelled at her for letting me dribble ice cream on my shirt. That’s just what three year olds do. Now that I’m an adult, I experience such things directly because people are all too ready to give their two cents about how to take care of my dog, as if my blindness prevents me from caring for him or noticing anything. People also assume that if you are blind you have no awareness of your surroundings. My favorite example is of when I was at Stanford running through sprinklers for fun, and another student kindly pointed out that I was getting wet and was not on the sidewalk…really? Lol.

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        1. Really? How thoughtful of him/her! Like you wouldnt have noticed hehe! Amazing! Yes you really should blog about your thoughts and experiences. Think about it…

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  2. I’ve heard all of these too. Also add in, ‘it could be worse. He could be dead.’ That one kills me. Many of my family and friends feel the need to tell me how everyone else has it worse. It’s likes i can’t be sad because someone else is more sad. Another really hard one is, ‘be thankful he doesn’t talk. Mine never shut’s up.’ That one crushes me every time. I honestly hear it quite often. What I wouldn’t give for my son to sass me or get mad at me. I would do anything for it actually. Hugs!

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      1. My husband, who is much more level headed than me, always says that people don’t know what to say. I get that. I really do. All I’ve ever wanted throughout all this is for someone to sit with me and just listen to me ramble and cry. Hug me once in a while. Bring wine and a good movie. Sometimes it’s not saying stuff that means the most. I don’t need them to fix me. Just listen:-) Anyhow, so glad I found your blog. Hugs!

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        1. Consider me your ears then…Im good at listening and Im always here. Feel free to rant or weep, but youll have to make do with a virtual hug…hope thats ok, lol!

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