Did you really just say that? The ignorant words SEND parents hear far too often

As a mum of children with special needs, I know I have walked out of meetings and thought, "Seriously? did I hear that correctly?" But I know that you often think you are alone or you've been made to feel slightly neurotic. As we have just launched our own workshops here at SNJ, we asked our readers, “What is the most annoying or stupid thing said to you about your child?”.  We thought we would receive one or two comments which we could share with practitioners during our workshops as examples of bad practice.

The response was overwhelming. It was sad to see so many of you have had to listen to some really inappropriate and incorrect comments. It was even more depressing that for every comment, about four or five people would comment below saying, “Oh yes, we’ve had this one.”   We wanted to share a few of them with you so you can see you are not alone, but also to show that we still have some way to go.

they said whatFrom family and friends (and the general public):

"Only special parents are given special babies like this." Just don't say it. It isn’t true and it doesn't help.

When telling people about my fight to keep him having the right education, non-SEN parents often say, "As long as he is happy," yet when their child is not having a turn at playing football they are the first to be there making a fuss.

"He doesn't look very Autistic does he?"

"If I had done that I would have got a good smack."

I saved all my baby clothes and equipment for a family member and when she had a baby I was told that she didn't want them, "In case it was jinxed."

"If you keep taking him to the doctors, he will think there is something wrong with him."

However, the majority of the comments our readers shared didn't come from family, friends or the general public.  Some of the most ignorant words came from people who really should know better.  Practitioners.  We expect to have to educate our family and friends, but not the people employed to work with our children.

Practitioners:

A Connexions advisor told my son never to aim high because he was too stupid (ADHD and Aspergers).  😥

A professional said to me, "My child does that," insinuating that the issue I was raising with them was normal childhood behaviour ... their child was diagnosed with Autism a couple of years later!

I was told that my 3 year old non-verbal child was, "Never going to amount to anything, you could throw money and interventions at a child like her, but it's a waste of resources and she would be lucky if she could manage a bus or stack shelves in Tesco's.” My baby girl is now a verbal, vibrant, vexatious, velo-riding, volcano!

I said, '"I just wish we could do things like go to a garden centre as a family, without him pushing toddlers over."  Her best response to that was, "Maybe you could just consider going to the garden centre when he's not with you."

A social worker who came out to assess us told me that, "We all make our choices in life, I decided to have one child as I wanted the best for him and to send him to private school."

Headteacher at our local mainstream school, "All my Teaching Assistants are refusing to do DSA Training as it would mean spending more time with your daughter." (the school had 1 to 1 funding). Also, "They are here to wipe tables and clean out paint pots not to take SEN children to the toilet, some of them are going through the menopause, you know!"

An orthoptist told me (in front of my daughter who has down syndrome) that she had always thought if she was ever pregnant and found out the baby had Down's syndrome that she would terminate.

A senior social worker said to be before a meeting to talk about our respite package, "Do you wish you'd put them into care when they were born"? (I have twins with DS).

"We don't need to put in any provision without a diagnosis, even that provisional one!" - SENCO and HT

"You can't claim DLA before a diagnosis, schools don't need to do anything before a diagnosis. You can't get a statement without a diagnosis." - Family link worker.

SEN Education Officer, "Well, if we adapt your local school everyone will want their schools adapting." (for wheelchairs)

Was told by the head of a mainstream school that my son acted the way he did because he got his own way far too much at home. She had known him for a day!

SEN caseworker at our LA team, when questioned why they couldn't meet deadline to complete statutory assessment, 'Your son isn't the only child in this city!'

silence

"Don't tell her she was a DS baby until she asks one day."

Our Portage worker said, and I quote, "There's nothing I can do, the best thing would be to lock him in a dog cage." She was deadly serious and then laughed, she even told this to the Early years Psych.

I was told to think ourselves lucky we got school transport' as I (the case officer) had to take two buses to get to school!

A specialist doctor once told me, "Einstein couldn't speak when he was young but your son is no Einstein."

Head said, "I know all about disability, I once taught a child with DS."

"What doesn't kill you makes you stronger."

Behaviour Specialist at junior school, "I don't think he can have Asperger's because he doesn't worry if his food touches each other on the plate."

I was told by a teacher once that my son brings it on himself. What she was referring to was the bullying and group beating he got.

I also found that no one knew who could diagnose ASD. I saw the GP who referred me to school, school referred me to the School Nurse, School Nurse referred me to health visitor, health visitor referred me to GP, GP referred me to CAMHS, CAMHS referred me to GP.

"It would waste the SEN panels time to have parents attend."

LA SEN Education Officer at first and only ever meeting, "If you plan on appealing we will see you before a panel at Tribunal..." This was before any assessments had been done, a draft statement issued or a school named.

Told by CAMHS, "We only see children who are medicated now."

Told by Head Teacher that my child must learn to conform.

Social worker said to me, "Your daughter can walk and talk, why do you need help?"

CAMHS: "He's too autistic for us to help him, as we deal with mental health, and autism is neurological, but he's not autistic enough to warrant a diagnosis."

"It's just because he is a summer baby, he doesn't look autistic but if he is it's only really mild , he will grow out of it."

My daughter's 6th form grammar school Head, when I asked him was he aware that being hearing impaired my daughter couldn't lip read and write notes at the same time - especially if he was wandering around the room, said, " Well she needs to learn to listen harder then doesn't she!"

A SENCo told me not to go for a Statement as they don't read them.

"I only ever read Part 3 of a Statement," once said to me by a SENCo in an Annual Review

I was told that if I ran my home like a school, my son would be no different to any other eight year old! (Head teacher of his first primary school)

The Head said it would be better if she did not have a seizure during assembly.

I was told by a manager of a carer's agency who were caring for both my children, "You must have been really bad in a past life."

The list was long, but the themes throughout were familiar, so many families said they could relate to several of the comments.  Why are so many families still having to listen to these levels of inaccurate, inappropriate and inconsiderate views?  Why should we have to?

Let's help these practitioners.  What one piece of advice would you give to them?

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Debs Aspland

Exec Director at Bringing Us Together
Mum of 3, wife of 1, Exec Director of Bringing Us Together, Owner of Inspiring Circles, Writer of Chaos in Kent, Development - South at Community Circles
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25 Comments

    1. Debs Aspland

      Hi Helen, I wish I could say I was surprised at how many people have said exactly the same “I can relate to this”. So much work needs to be done on culture, hearts and minds. Legislation is only a small part of the change needed.

  1. Brilliant article, there is generally very wide-spread ignorance amongst the public (and professionals) at large. Sometimes comments are well meant but due to a lack of knowledge or understanding can be acutely hurtful. There are those, of course, that just don’t care and say whatever they want because they think they are better than you because they don’t have a ‘damaged’ child.

    Sadly society seems to be regressing in many ways and instead of communities working together it’s very often every man for himself. Instead of preaching inclusion without the funding to make it work properly we should be working together to educate effectively, eliminate negative stereotyping such as labelling disabled people as scroungers and promote equality of opportunity in everything we do.

    I was once explaining to my boss how hard it was caring for my son and he seemed to understand but then said “It just shows you, there is always someone worse off than you”.

    1. Debs Aspland

      Oh Ian, I think we’ve all had those well-intentioned comments that leave us with our jaws on the floor. Thanks for sharing that story, I know many families who will relate to it.

      We need to get back to communities, don’t we?

  2. StephsTwoGirls

    My advice would be think before you speak. Appreciate that the parents know the child and family circumstances best – please listen to them. Make politer, reasonable suggestions by all means, but don’t assume that your way is best and don’t aim for the outcome which is best for you and your school/organisation. Put the child first, please.

    1. Debs Aspland

      I think if we wrote a list of everything and compiled them, we would be looking at more pages than all the Harry Potter books put together. Oh there’s a thought – we could sell the movie rights to it and buy unopinionated and educated provision.

  3. Gill Ingham

    Please don’t make assumptions about my child. Please read the file fully and understand the facts before you write your report. There is something fundamentally wrong when the people who are supposed to support you cause more stress and anxiety than dealing with the SEN(D) itself.

  4. SB

    My favourite recent one was the manager at preschool saying ” I’ve read up on the condition. I know how you feel”. ( My daughter has a rare genetic condition.h No you don’t because if you did you wouldn’t utter such fatuous tripe……

  5. Danni

    “There’s nothing wrong with him that a good game of rugby wouldn’t fix.” said my GP. He also argued that a camping trip would benefit my ASD/SPD son. Yeah, a boy who lives solely for all things electronic would have a ball in a tent, in a strange place, with strange noises and no oven in which to cook his pizza. Got me another, (slightly) less stupid GP.

  6. Yasmin Din

    I would suggest that professionals don’t offer advice unless it is asked for – advice that is not wanted is just a personal opinion, and most of us as parents wouldn’t force our views on others. Having a title doesn’t make your opinion right. Unless you have really walked in that persons shoes your opinion is really not important. It may just be that the professional could learn something from the parent.

  7. lovingarainbow

    On my posting a picture of my son on Facebook next to an image saying I am more than Autism and listing all the different qualities and attributes. ‘ I have already accepted that he is Autistic I don’t need it thrown in my face all the time.’ ‘People already know he is Autistic now deal with it and stop posting about it’ both from my Mother.

  8. Pay attention to the parents! My son was obviously autistic as a toddler, but because the doctors refused to listen to me, he is now 12 and still years behind in social behavior! When he went for an autism test at the age of 12, they used a scale based on a 4-5 year old child – 12 year olds do not test the same as 5 year olds! He has a diagnosis as ADHD, but that doesn’t provide even half of the assistance he needs. I agree, all medical professionals that have to deal with or diagnose any type of special needs should have to go through an intensive training conference that shows the MANY faces of special needs, not just the OBVIOUS ones 🙂

  9. Ella

    Some truly shocking comments. I can’t think of all the ones we’ve had because it will make me too cross but the one I remember most was a very early one.
    Having my ASC son’s behaviour described as “rude” on his SEN statement at his primary school even after I’d asked for this to be worded more appropriately. His lovely head of the ASC unit at his new secondary school wrote (he) likes to be very honest which can cause problems at school. Much better.

  10. Sharon Hall

    My advice to practitoners, when speaking to SEND parents. Stop take a deep breath and put your brain in gear before you open your mouth. My eldest son is 18yrs old and I cannot believe that practitioners are still making the same crass comments now as they were when he was first being seen 171/2 yrs ago.

  11. Karen

    My daughters new form tutor informed me this week ‘she knows how to deal with her as she’s taught ONE OF THOSE before.’ I assume that’s the Down syndrome diagnosis she’s referring to and not my daughter being a girl?
    I’m afraid I did what I usually do in these situations after I’ve recovered from the shock, just realised I could then completely disregard everything this delinquent then said and just glazed over.

  12. Yes sadly i have heard nearly all these comments in the pas 20 years we still have a long way to go.keep up the great work. Ps when I took Patrick and Angelo to GP when they were 3 and 6 he said your children never keep still always touching my things. Do think your children aliens after i voiced my concerns !!

  13. Auntieh123

    My son is 34 now. He has Down’s syndrome. Twice when he was young I had someone say to me ‘you don’t look as though you have a handicapped child’. I knew another mum whose daughter had cerebral palsy who had the same said to her. It still baffles me today.

  14. Jenny Brown

    Don’t decide what they can or cannot do and do not decide how the person feels. Only the person knows how they feel and what they can cope with they let us know by either speech, behaviour good or bad. Give special needs people the support so they can explore in a safe way. Basically don’t presume find out what special needs can do by exploring.

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