What’s the Worse Thing You Can Say to a SEN Parent?

I have been stewing all afternoon. I feel angry and sad in pretty much equal measure. And I am incredibly cross with myself for feeling this way. For blowing something out of proportion. But someone said something to me today that, without any malicious intent, hurt painfully. Maybe writing this post will help me work out why.

There are plenty of terrible things said to parents of children with additional needs every day. The ‘what’s wrong with your child?’ (the looks usually hurt more than the words, in my experience) will be familiar to most. ‘Oh you’ve got a naughty one have you’, we had several times before we were able to take our GoTo seat out and people realised that Boo wouldn’t sit in the high chairs they offered us not because he was naughty, but because he just couldn’t sit in them.

Then there are all the things not said directly to you, but you read in the papers or hear on the news. The daft things Councillors who have now had to stand down said, or the use of the ‘r’ or ‘s’ words heard when walking down the street.

Don’t get me wrong. All of things make me mad. Hopping mad. But I know they come from a position of ignorance. They don’t hurt me, even if they offend deeply, because the offence is against standards of human decency rather than me personally or even Boo. If they ever said these things to his face, well, let’s just say that would be another story.

What was said to me today is a totally different kind of comment, uttered by a well meaning person. Maybe that’s why it hurts more.

I won’t go into all the details for fear that somehow, someday it might get back to the person in question. And I wouldn’t want her to be as upset as me.

Let’s put it this way. I was in a therapeutic context. As Boo was not fully co-operating with the said therapy for a few minutes (and only a few minutes, he worked so hard), I tried to explain why. It was because different therapies he’s engaged in had suggested different means to the same end. He had mastered one technique (and how – more on that soon, because it’s great news!!) but as a consequence, he lost interest in the other. I said ‘Boo can’t get his head around doing this in two different ways, I think.’ I was told the other technique was wrong (although other professionals would, no doubt, disagree). I am quite open-minded and am happy to try both, but piss on one of our inchstones and it makes me sad. Every gain made in Booland gets celebrated and we were happy about his progress. To be told it was valueless made my heart sink.

And then, plunge. It hit the floor with these words: ‘And I don’t think you should use the word “can’t” around Boo. It is terribly demotivating and you are setting limits on his potential. He’ll pick up on that.’

And so, I found out today that the unthinking ignorance of the great unwashed when they make ill-informed opinions about those with additional needs rile me greatly and galvanise me to try to change opinions. But accuse me of demotivating my son, of setting limits on his potential and well…You have me beat. You may just as well have run me with over with a car.

The Boos are why I get up every morning. I smile and inanely encourage through every therapy session at home or with healthcare professionals. Frankly, sometimes I don’t feel like it at all. Sometimes, after three hours sleep I want to go back to bed. Or eat cheese and drink wine. Or run away. Sometimes, I want my life to be less like Groundhog Day but without Bill Murray to make me laugh. Sometimes, I don’t want to try to teach my son to roll for the 600th day in a row.

But I never give myself a break. And I never fail to summon every ounce of me to encourage Boo. Because he never gives up, I don’t give up. He has achieved so much. And I don’t take credit for that. I know it’s down to his determination and luck. But it is partly down to me, and all the hours and hours I spend every week doing the therapy, doing the research. And smiling when I don’t want to.

I am not a perfect parent, but I try harder than is sometimes good for me. I have never been so motivated about anything in my life so much as my desire to ensure Boo has the best opportunity to reach his cognitive and physical potential.

That anyone could say anything to the contrary to me or any parent of a disabled child, knowing how hard we try … well, let’s just say I can think of few things that could have hurt me more.

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22 thoughts on “What’s the Worse Thing You Can Say to a SEN Parent?

  1. Mummy Says

    I’m so sad for you, and angry for you and hurting for you. It’s so clear that you do everything you can , every minute of the day, to help Boo do the best he can do. I hope writing this all down helped. I wish I knew what to say… Xx

  2. mylittledreamworld1

    This too made me quite sad. I find it sad that a professional would thing, let alone say that. Clearly we all have limits, and can’t do everything. I’m not sure why you shouldn’t say that. Especially in the context you have used.
    I hope you realise that the effort you make and your hard work goes so much further than you think – you influence Boo’s attitude, his effort and give him motivation to succeed. He needs you and you need him.
    Hope you feel better soon xx

    1. mrboosmum Post author

      You’re right: we do need each other and we both try so hard for each other. One of my worries about writing this post was I worried people would think I was over-reacting. People have been very understanding. Thank you.

  3. Complicated Gorgeousness

    I think I can guess on the two therapies that clashed. I had exactly the same but go with you gut. That “other” therapy helped Gabe so much. You are doing an amazing job in exceptional circumstances and it is crazy how sometimes the most random of comment can knock you over. Take care lovely and take no notice #poloco x

    1. mrboosmum Post author

      I think you can guess, but maybe not which way round things were said… Yes, it totally knocked me for six. Ridiculous really. Thanks for commenting, lovely.

  4. Iona@redpeffer

    That has to be one of the most unfeeling things I’ve heard in a while. I know that the individual concerned must see a great many parents, some of whom might have difficulty in supporting their child. But the key is in understanding to whom you are speaking and not generalise (which I think is exactly what may have happened here.)
    You know your child better than anyone else, and you do your very best. That’s what really matters.

  5. sarahmo3w

    So sad to read that. Such a thoughtless thing to say and so sorry you have been hurt by it. You do an amazing job for Boo and he does an amazing job himself. It’s not fair that others who can’t understand what you’re going through should make such a comment.

  6. Merlinda Little (@pixiedusk)

    Words hurt. Cuts like a knife dont they. I dont what you mean. I am struggling too. As a mother there are so many things that I am aspiting to do but a lot of times cant cuz I dont really have help and its hard. Simple things like potty training or YOU CO SLEEP???? Simple comments like that that … makes me feel inferior. I wish people will be more sensitive cuz again words hurt =( #pocolo

    1. mrboosmum Post author

      Aww. I’m so sorry you are facing this. Why don’t people think about the impact of what they are saying before the open their mouth. I’m sure you are doing a great job. Other people don’t have the right to judge how you are potty training or whether or not you decide to co-sleep. I hope you feel better soon.

  7. Leanne (@suggys.co.uk/Leanne)

    Awww hunnie… People should really think before they speak, words can hurt right to the core! Sending lots of Hugs x #PoCoLo

    1. mrboosmum Post author

      They do. I’m sure the person concerned would be mortified by how upset I was, but it really did hurt. I’m feeling a little better about it today. We have to go back next week, so hopefully the feeling will have completely subsided by then.

  8. Raisie Bay (@okesanne)

    I always state that whether it’s a professional, a friend or a family member, there is no-one who knows your child better than you, even though at times they may think they do. Don’t let insensitive remarks upset you, often the perpertator is not thinking of the consequences of their words. Whether they actually mean to upset you or not is irrelevent, let it pass over you. Have a rant, take a deep breath and carry on. life is hard but it’s also rewarding and you can’t let others bring you down. Sending you a big hug x

  9. ojosworld

    In everyday life can’t is a word we don’t like to hear. But can’t is necessary word when your child has additional needs! I can understand your upset and if you have educated one person with this post today, then you have done good #PoCoLo xx

  10. nikkstar

    I read your post last night and my reaction was ‘Really, that bothered you?’ and I kept thinking about it. Why would this bother you, why would it bother me…lalala, a night of non-sleep later and a good think and I realise why it bothers me. Because it bothers you. It doesn’t matter what the person said, what matters is how it made you feel.
    I have had other SEN mothers make me feel as small as a grain of sand, and you would think they should know better! One commented to her daughter when I had to feed my daughter in my lap after an hour of screaming because she was too tired to sit in her chair (I really tried to persist), ‘Yes hunny, we haven’t fed you in my lap since you were a little baby’. She continued to say things about what she had been doing and how it was better because her daughter was so far advanced than mine. This drove me batsh*t crazy. She was offering very sound advice at what she felt would help, not realising the entire time telling me what I was doing wrong. It has taken me AGES to come to peace with this mother.
    So I completely empathise with your disgust at what this therapist said. The important thing is to not let it ruin the absolutely amazing effort you do or the love you feel for your Boo xxx

    1. mrboosmum Post author

      Thank you. What a rely thoughtful comment. I think what that mother said to you was completely out of order, and I have friends who have had other SEN parents say terribly judgemental things to them. Like you say, it is about his it makes you feel and, for me, not thinking about how what you say might make someone feel before you say it. I will take your words to heart. Thank you.

  11. wrymummy

    Oh my goodness, what a sad post. You are doing an amazing job and working so hard to help Boo reach his potential, I can see how that comment made you feel so beaten. I hope you don’t hear another one like that for a very long time and get left in peace to keep being the perfect mum to your Boos. Big hugs x

  12. Jaime Oliver

    awww my lovely i am sending the biggest hugs! dont ever say sorry for being sad or hopping mad .. you are human and this is your child others are limiting with words. I am sending cyber cheese and wine along with real love xx

    Thanks for linking up with #PoCoLo xx


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