Special needs children- speaking sensitively

[Mypark]

Parents of children with special needs-

How can family and friends support you more?

What is helpful?
What is supportive?

Please no negativity. Just what you would like from those around you.

As a "special needs" adult, calling disabled people disabled people instead of weird euphemisms would be nice, please.

To explain - disabled people are protected by law, so using other terms such as special needs or differently abled etc risks non-disabled people such as teachers etc forgetting that we are entitled to reasonable adjustments for our disability by law, which causes problems for us in school and later work and similar

For people to stop taking offence at language, language around disability changes all time, and I feel sometimes people can't see the wood for the trees the tie themselves in knots arguing about it and forget about the actual needs of the disabled person .

Anything would be a start... (I've never received any support whatsoever).

Ask if they would like you to read reports, double check (enormous) forms e.g for DLA, go to meetings to take notes, make phone calls, look for grants etc.

Read up on the child's disability or go to training days that the charity connected with it might hold. Most websites have useful factsheets.

If there is a really important day where you know they might be going in to receive a diagnosis, or look round a special school, send them a message asking how it went.

Don't say "he'll grow out of it and be fine" or "I taught someone with autism and he was nothing like that" or "Asperger's isn't autism" or other ridiculous comments like my family have come out with over the years (true examples above).

I have a son with a range of special needs and learning difficulties .. it's great when I can talk about it .. when he was young I remember people saying " oh he will be alright" which wasn't very helpful . Also there are certain foods/ times/ lights that can really exacerbate his issues so being able to suggest where to meet up is helpful . He is now getting close to when he would take his first exams ( GCSEs) but obviously won't be able to take any so friends suggesting practical courses is also brilliant . The fact you're asking this question in the first place though speaks volumes about your kindness and empathy so I'm sure whatever you do will be welcomed! It can be quite lonely sometimes .. I have other DCs who are quite academic but super supportive and proud of their brother which is lovely to see xx

Use correct terms like disabled, chronically ill. Etc. E.g. "Jane is disabled so she has additional needs like needing help when drinking", "Luke is chronically ill and uses a wheelchair". Don't say "Luke is special needs" or similar. Similarly, when speaking to others don't share such info without permission, and if you do share, don't go into details. A relative once told a stranger that DD has incontinence issues. In front of her, with no prompting or asking, and in graphic detail.

Disabled isn't a bad word, it's better to ask why someone is disabled or what you can do to help them than just stare/ignore the obvious.

If the person is non verbal, you can still speak to them. Ask them how they are, compliment something like their t shirt or their drawing etc. Don't expect or prompt a response.

Speak directly to the person, not who they're with or their carer. Don't push their wheelchair or touch them unless the ask/without asking them.

If you can't offer respite (caring for the child for a stretch of time without their parent), offer or ask if they need help with other things like cooking, cleaning, shopping etc.

I should add, some people prefer additional/special needs, some prefer to be "a person with a disability" rather than "a disabled person". Check and follow cues

Just thought of something else, though I don't know your set up.

If your child has done well at something, or got all level 9s at GCSE, don't think you have to keep it a secret. We can be happy for other children!

If they tell you of their DC's difficulties don't minimise or say 'oh lots of children are like that'.
Offer to meet at time and place to their convenience as juggling needs is hard enough.
Celebrate the successes even if your same age child could do that at age 3 and theirs is now 8.

I would like you to listen to what I say and just fucking believe ME rather than whoever you talked to on the bus that day.

For me it's for people to be tolerant and understanding.

If I'm dealing with a situation please just stand quietly and wait until I'm done. If I ask for help please do just what I've asked for, no more and no less.

Please don't think you know my child better than I do. Please don't think you're medically qualified to give advice unless you actually are.

You need to be very close to me (ie my mum or my husband) for me to feel that your advice or observations are helpful.

My mum occasionally tells me that I'm doing a great job, which means a lot. A nice Social worker also said that once which almost made up for the truly dreadful Social worker who I'd been unfortunate enough to talk to beforehand.

I've accepted that there's very little practical help so it's just help to not feel judged or embarrassed that's most needed.

Also after 14 years of caring for a SEN child if you do, do any of the above annoying things above, I'm now more than thick skinned enough to tell you how annoying you are. If you're helpful I'll let you know that too.

I work outdoors with animals.

Yesterday a mum and her three children were booked.

She said to me this is x, y, z.

Y has autism, he won't talk to you, he won't say please or thank you. He requires you to talk to him, he's nervous about today. Etc etc.

She was so clear and constructive.

He did talk to me by the end, he listened as I explained how to feed and handle the animals. He took my hand to gain extra security feeding the larger ones.

She was delighted, because I had listened, he had listened.

In turn, I explained that was on her. My nephew is autistic, my sister excepted me to guess what to expect, once she started saying please do this or that everything became much easier.

So not a point of view from a parent, but from a mum, please tell me and I will try my best to listen.

Not assuming that there’s some agency or service out there that can help to the extent that life will magically improve. The attitude to families affected by disability seems to be that they simply haven’t accessed appropriate services & need a white knight rescuer to signpost them to ‘help’ … you need to talk to your GP/HV/school/MP/demand a referral etc then you can stop whining.

The simple fact is appropriate services - educational, medical, social, respite - do not exist to any useful extent & telling parents who know the system inside out that there must be someone who can help if only they tried harder is just insulting.

and yes to ‘special needs’ … SEN is appropriate when talking about educational needs but cringe at best when talking generally about people (including children) with disabilities.

Yes as others have said great that you’re thoughtful enough to be asking the question

a lot of people ask occasionally but then seem to forget / not really grasp how tough the day to day is despite being told

check in often, not focused on the DC/DCs but just more generally, don’t be a stranger. So many of my friends just feel distant nowadays

Don't tell me you know what it's like. Do you really??

Don't tell me you know how I feel because unless I have chosen to tell you then you don't.

Don't tell me you don't know how I do it. I don't exactly get a choice, do I?

Don't tell me that must be difficult. I know it's difficult, I do it day in, day out.

Don't tell me that my child can be cured by a gluten free/vegan/snake oil/some random pill/prayer. Their needs are lifelong and if they could be cured then I would have already done so.

Instead:

Do listen to me when I need a shoulder to cry on, someone to rant to or even just someone to talk to. Just knowing that there is someone there is so, so important for me.

If you're a master cake baker or make a mean curry then I would love to sample your wares. It's not often I get to bake cakes/make elaborate meals myself.

Accept me being blunt and direct about my child's needs, even the unsavoury bits. I've learnt that often this is the easiest way.

Finally, don't treat me or my child like we are some kind of alien species or we are made of porcelain. Just treat us like any other person.

nb. I'm not suggesting that you have said any of the 'dont' list above, its more of a generic you.

Believe that how a child presents to you in public could be very different to how they are at home in private. It's quite common; it's called masking. This is especially important if you are a teacher, coach or activity leader.

If the parent discloses behaviour that sounds extreme to you (hitting, kicking, spitting, soiling) try not to act too shocked. Being shocked doesn't help with practical solutions (like getting to the bottom of what DC's upset about or locking away valuables).

Tell them they're doing a good job. My MIL is great for this. I really appreciate it!

I hear what the PP said at times about not concealing your DC's achievements but maybe read the room a bit. It is a little unkind to harp on and on about how great your child is academically to the parent of one who struggles with academics.

If the parent is in a relationship then bear in mind it's probably under considerable strain.

Check in with us, make sure everything is ok. We might not manage to make social events as getting evening/night care is nigh on importable so come to us if you’d like to see us. It can be really isolating have disabled children.
Finally don’t presume there is lots of help out there for us. There isn’t.

Understand, that people with disabilities are individual
So many times I have read on here for example "Autism isn't an excuse, my child with autism wouldn't behave that way"
No but it might be a reason for a certain behaviour ,and some people like my son don't have the capacity yo Understand why his behaviour is considered inappropriate.

Don't say "Luke is special needs" or similar.

Apart from anything, it’s also just terrible grammar and makes no sense. Like when people say ‘Luke is ASD or Luke is ADHD’.

Our family has always been great - it’s actually really hard to pin point what it is!

I have a friend who suspects her DD has autism and her family aren’t very understanding or patient. She thinks that if she had a diagnosis they would respond differently, be more understanding and do a bit of research. I suppose it’s helpful to be supportive to those who don’t have an official diagnosis yet - because it can be a long winded process to get to that point.

@colouringfoxes
@x2boys
@Carrieonmywaywardsun Thank you for explaining the impact that terminology has. This is exactly why I started this thread. Xx

@oldtableleg I am guilty of this- I hold my hands up to this because my niece is non verbal, I really wanted my sister to get more out of the speech therapist. I felt the therapist wasnt doing anything.
Even though I was super careful not to say anything to my sister, I was looking up pecs, speech apps on mobile phones and then trying to slip it into my conversations..

Yes. And please remember that just because some thing cured a person, doesn't mean it'll cure me. And don't suggest I try something - chances are, I've already explored that option. (including the utterly ridiculous suggestion that I wear stronger glasses, my vision will be fine. Believe it or not, that's been tried since I was about 2. I'm now in my 30s and still have vision that can't be corrected)

@BeanieTeen I can understand why the grammatical errors are irksome. Im sorry to hear that your friend's family are not being supportive. I hope that changes soon.

@CatsOperatingInGangs thank you for your post. I think its so important what you said about the assumption of help. Its definitely what I thought.

@Phineyj Thank you for your post. You make some really salient points, especially the one about relationships. Its something I will definitely be more mindful about in the future.

@ahna68 Thank you for your post. I like the point about checking in more.

@sheepandcaravan Thank you for your post, as @x2boys said- not all children are the same. It is really helpful when parent and carers give clear instructions as what may work for one child will not necessarily work for another.

Listen.

Listen to what I’m telling you, whether that’s about my child or about me.

Accept what you are seeing and hearing, even if it is difficult. I honestly do know more than you about how my child’s condition affects them. I actually do know what I’m doing, even if what I am going appears to be either unreasonably harsh or lax to you.

Learn. Not from Google. If I point you to a particular website or give you a guide, take a look. Don’t come back and attempt to teach me! Especially don’t come back with miracle cures and magical treatments. Resist the urge to tell me about how your aunt’s neighbour’s grandchild had the same thing and they’re just fine/dead now.

Offer help. Not “oh, you need to do x, contact y, chase up z” but actual useful help. “Sounds horrendous; how about I play with her for a bit whilst you make that phone call?” “You know, if you can show me what to do I’m happy to feed him for you?” “We’d love to have you over, what do we need to do to make that a possibility?” “Call us next time you’re having to call an ambulance; we will pick up the others from school/bring the wheelchair up for you/do your washing.”

Treat the child as you would any other child. I don’t mean place expectations on them. I mean, if you would normally give a birthday present, give a birthday present. Ask me for ideas if you like; I don’t mind. But don’t mark siblings birthdays and ignore him because you didn’t know what to give him:didn’t think he’d notice. He might, he might not. But his siblings will. And I do.

Send cards to my child when they are in hospital. It’s horrid being the long stay/frequent flyer on the ward when children come in for minor ops and have a wall of cards from friends and family, and we are in for the third surgery of the year and have an empty wall. Doesn’t need to be big and fancy. Just a quick thinking of you/sorry you’re in again type thing.

Please don’t sympathise with me every time we meet, telling me how awful it all is, and how difficult my child must be. Especially not in front of my child. Do you honestly think they need to hear that? Stop with the What-a-shame comments. Compliment my child on a funky t shirt or ask them about the toy they’ve got or whatever. Basically, think of them as a child, not a burden.

Listen (again!). Listen to what I don’t say. If you ask me about something and I turn the subject, or give you a vague answer, move on, don’t press.

Forgive me. For cancelling on you last minute because the appointment we’ve been waiting for for 18 months has just come through. For being late because we had to do a last minute clothing change. For not being able to come to your restaurant of choice because they have the wrong kind of chicken nuggets. For not getting back to you straight away. For ending a conversation abruptly because my child is about to jump into a river/set themselves of fire/is having a seizure/about to eat a slug. It’s a two way thing - I forgive you for not understanding my child’s sensory issues, for unintentionally insulting me or my child by the assumptions you make, for comparing the trauma of knowing my child needs major brain surgery to your own traumatic moment when little Jonny had an ingrowing toenail.

Don't say how wonderful/amazing/inspirational they are for doing things unless the parent does first.
Yes, sometimes it is great that they're doing everything like other kids... other times it's wildly patronising.