What Not To Say

Oh, people put their foot in their mouths all the time, so, in the interests of harmony between us, and me not jumping on your head, or down your throat, here is my list of ‘Things What Not To Say To A Parent Of A Child With Learning Difficulties Like, Say, Down Syndrome’.

  1.  Did you know? (Sympathetic lilt and head tilt)  I’ve written about this before, but come on!  I’m asked this all the time, and I’m still not entirely sure what people mean by it.  What do they want me to say?  Yes, I knew I was having a baby.  Yes, I knew it was only going to be the one.  No, I had no idea that it would be a boy, or that he would have red hair.  That was it.
  1.  Is it true that Down’s people don’t feel sadness?  Perrrleaaase!  Come to my house at bed time/tea time/any other time and you will witness a whole range of emotion from teenaged grumpiness to frustration to sibling anger to teasing laughter.  Please don’t assume that because he has an extra chromosome he won’t cry of you hurt him or laugh if you tell him a joke.  If you cut him, he bleeds.   And while we’re at it, can we put the Down’s at the other side of person?
  1. He might be able to live in some sort of sheltered accommodation thing when he’s older.  Ok, so maybe it depends on the age of the baby when this one comes out, but in general, no.  Just no.  With the pissy economic bad luck of my generation I’ll be stuck with three kids in the house for years to come, while they attempt to save up enough cash to move out, chromosomes or no chromosomes.  In the mean time I’d quite like to enjoy their childhood as much as I can, if that’s alright with you, rather than depressing myself with thoughts of a future I do not know.
  1. I treat him exactly the same as the same as the rest of the class.  Well, that’s very nice of you, but in case you hadn’t noticed he has significant learning difficulties and he won’t remember on Friday, when everyone is enjoying their Golden Time, what it was he did on Monday that means he has to sit and watch while everyone else has a good play.  Thanks to a slower working brain, it will take him longer to understand what you want him to do.  You’ll need to give him time to come to terms with a lesson that he really likes, say PE, finishing, and starting another one.  Adjustments so that he can participate in class life will have to be made.  Sorry.
  1. They are so loving.  Well, you know something?  Until relatively recently, many people, adults and children with Down Syndrome, lived in institutions, not loving homes.  I don’t know about you, but if I spent most of my life stuck in a hospital-like situation, with people who didn’t love me, most likely treated me badly (Winterbourne View, anyone?), then I’d be pretty overjoyed when someone paid me a bit of attention.  Think about it.  And while we’re at it, let’s have less of the ‘they’.   People who have extra chromosomes are just as individual as you or me.  He may be like this, he may be like that, he may be like the other – just like you or me.  All women are not a, b or c.  All men are not d, e or f.  His individuality is no more constrained by his genetics than yours or mine.
  1. He is fine in class.  Really?  Really?  Because I can’t get him to walk the five minutes up the road in the mornings.  I can’t get him to do any homework, like reading, or spellings, or colouring even.  When he gets home he is exhausted, and I have to carry him up the stairs, every night, because he flops to the floor at any mention of having to do anything for himself.  And do your standards of behaviour match mine?  Because, from the odd throwaway comment you have made, the way I’ve seen you let him go to the front of the line when he wants to, rather than taking his turn like everyone else, I’m not so sure that you do.
  1. Leave it to us, Mrs Sam, we’re the professionals.  Er, no.  The last time I looked, I was the expert in the room on my child, not you.  And this doesn’t make me a pushy parent, it doesn’t make me someone who wants to run your show; it makes me someone who wants the best for my kid, and wants you to know some stuff that will help you teach him better.  I didn’t spend all this time and energy getting him to the stage where he could attend a mainstream school for you to cock it up over notions of professional pride or a misplaced sense of do-gooding-ness.
  1. Down’s kids don’t get nits.  I.  Kid.  You. Not.  Just don’t say it.  Don’t even think it.  Nits are no respecter of race, class, creed or chromosomes.
  1. It’s not fair on me.  I’m sorry, what?  Who said anything about fair?  When the bell goes and the children return to their homes, so do you, and, if you don’t have kids of your own, you get to revel in some lovely peace and quiet.  And look!  To help make those difficult days a bit more palatable, you know, those ones where the kids were off the wall, high as kites and just didn’t seem to get it, you get paid for your trouble.  Last time I looked none of that applied to me.  I didn’t volunteer.  I get no financial recompense for my hard work.  I don’t have a choice.  I can’t walk away at the end of the day.
  1. If I found that I was carrying a baby with Down Syndrome, I would have a termination.  Well, that’s your decision, I suppose, but every time you say that to me, especially when my son is in the room, or worse, in your arms, you say that he is some sort of non-person who shouldn’t exist.  Last time I looked, chromosomal normality didn’t guarantee anything much, other than chromosomal normality.

And don’t assume, just because I’ve got makeup on, or nice nails, great hair or a new dress, that everything is OK.  Don’t assume, just because it seems alright on the outside that it hasn’t been a long, hard journey to get here, that there haven’t been tears and tantrums and tiredness, deep dog tiredness along the way.  Don’t assume anything.

And if you can’t think of anything decent to say, don’t say anything at all.

I can be cheesed off too, you know.
I get cheesed off too, you know.

28 thoughts on “What Not To Say

  1. FABULOUS. This is a great list. People have said to me, “they’re so placid and loving aren’t they?”… Well, no – often Mikey is not really either of those things AND, are you talking about a golden retriever or my human being son?!

    Keep going. xx

  2. So helpful! Thank you. I’d love a follow-up post about some things that you have found helpful that people have said or done. It would help me care better for friends in my life.

    1. I think the biggest thing people did, and do, was (and is) to listen to me ranting away 🙂
      They don’t judge me (well, not to my face, anyway), they just wait for me to figure stuff out for myself, let themselves be my sounding boards.

  3. May I add one more? “What’s he going to DO when he gets older?” I don’t have a child with Down’s, but I do have a grandchild who is mildly autistic. He’s doing very well, but some people just can’t resist the urge to think out loud.

  4. # 3 when someone suggests my daughter may one day live in sheltered accommodation, I reply “yes perhaps she will, or she might live with her mates or husband or girlfriend”

    1. what about eternally sticking Downs Syndrome in front of boy or girl. It infuriates me . They are a boy or girl first – Downs is just a detail

  5. Hi, this was really useful to read and I’m so sorry people of this world are so ignorant. As a teacher and a Senco, I’d like to say I have never met a teacher or Senco who ‘knows best’ some think they do. But how on earth can any of us? (Rhetorical by the way). Each child is different and individual and wonderful as themselves. And sadly there isn’t enough children with special needs in our mainstream school systems for us to be able to even know much at all let alone to know better!! Parents are the experts with their children they know them more than any teacher ever could. So if any teacher ever says that again send them to me!! No seriously do, I’ll educate them!!!

  6. Incredulous. I am a SEN and DHT with 27yrs teaching experience and would never dream of saying I knew best…to any parents.
    Over the last 2 years, I have watched (and listened to) the parents of a Down’s Syndrome child fight against and then realise that the provision in a special school is now the right environment to meet his needs, both socially and educationally. This suggestion did not come from me or any other staff. We were always honest with them daily about the good and not so good times. They said they had been discussing this issue for years and as the gap, again both socially and educationally widened between him and his classmates, they visited a few provisions and saw how his needs would be met in a different way than at our school. They also said their reluctance was partly down to the stigma they felt used to be attached to special schools when they were young.
    Now the decision has been made, you can see the difference in them. They have also told us that they were happy with his progress with us but now realise he needs a different provision that will be able to cater for all his needs. I told them our school is a better place for having had their son here for the past 4 yrs.
    Thank you for opening my eyes to what has unfortunately been said to you (and many others). Makes me even more determined not to put my foot in it.

  7. one thats sticks in my mind in “so whats his life expectancy?” sorry, did you really just ask me when I expect my child to die?

  8. I love this, does the fact it made me laugh mark me out as the parent of a child with learning difficulties?It is so awful it’s funny.Children with DS don’t get nits!!!!????

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