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 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.