Parents of non-verbal children, would this bother you?

[ThisIsMyStory1]

Not brave enough for AIBU.

I work in a major government department and they've decided to do a video compilation for 'Thank you Teacher Day' of their employees children saying who their favourite teacher is, their school, why they love their teacher etc

It got sent out via email to teams rather than just being on the intranet, so felt quite targeted in some ways. I don't know why but it just knocked me for six. I've got two severely autistic children with zero concept of what a teacher even is, let alone why they like them! It just randomly hit me again that I'll never hear those kinds of words from my children but almost everyone else will from theirs.

I can't explain it but we'd never send round something asking us to talk about our Mothers, our religion etc because people would feel excluded and possibly be hurt by the reminder.

I'm also probs feeling very sensitive because we were only in court in January because a teacher physically assaulted one of our children and took advantage of him being non-verbal, if we hadn't noticed the bruise I dread to think of what could have happened. He's got a lovely teacher now that we're slowly growing to trust but I think a lot of SEN parents struggle with schools and teachers in general, or is that just my warped view?

I object to having them choose a "favorite" teacher because I feel that's inappropriate. As for asking for the children to speak I don't think it's targeting or excluding nonverbal children,and I have a non-verbal child with cerebral palsy but who uses an I-pad with Pro Loquo to go which is a software program he uses to converse with specially produced for autistic,nonverbal children.

@EKGEMS ah we're aiming for something like that eventually! Right now there's zero verbal understanding from us or from his teachers. So we're working with PECs but not really getting anywhere as he doesn't understand the concept at all. He's almost 7 so we're hoping he'll start understanding a bit more as he gets older

Yes he sounds a bit young but perhaps soon! We were told "No he's not ready yet" but we just bought the iPad and the software and taught him and the teachers/speech therapists hand was forced so to speak and that was around age 11 he's almost 20 now

I agree this is inappropriate. Although could your child hold up a sign from you saying "we would like thank Mrs Jones for all she does" or similar? Not that you should have to feel obliged of course.

I'm so sorry for what you went through in January, your poor DS

I think it’s a bit icky but not actually inappropriate because it’s exclusionary.
We get emails home from school every week that highlight the gap between what my DD can do and her peers. It doesn’t mean the school shouldn’t send the emails.

I do understand where you are coming from but I also think you are possibly feeling a bit oversensitive too. Our DS in non-verbal if I wanted him to join in I would use a switch or a sign or something, it would be me speaking for him but this is something that we have to do as parents of children with little or no communication anyway.

I do get why you feel left out though. I have just been told that our topic for the term is healthy eating, My son is tube fed! Initially I thought ‘oh great they haven’t even considered him’ but then I shook myself a bit and thought about how I could take the very basic concept and make it appropriate for him.

My DN (now adult is severely autistic and largely non verbal).
Yes, DN can't talk about his teacher - but his class mate could have done, sadly she passed away from her condition before she had the chance.
If everybody objected to everything somebody might possibliy feel exculded from - we'd end up in a Fahrenheit 451 type world.

I have a non-verbal child and wouldn't be bothered by this - provided they were happy to include DD at her level. So for us that would be either video of her with me talking in the background, video of her waving/clapping (she can also say Thank You in Makaton) or video of her holding a sign.

Hmmm I have a severely autistic non verbal child too but I would not be offended by this.
I think I would do a little video of him holding a sign saying who his face teacher is (even though he can't tell me) and use it as an opportunity to raise awareness about non verbal autism.
As a pp said, I would find the whole 'favourite' teacher thing cringy though.

This whole thing sounds weird to me. An employer wanting to make a video of employees' children? WTF? Massively overstepping the bounds of personal privacy! Why do they think they have the right to even ask?

And yes, it's also very cheesy.

Are you upset because you see this as exclusionary, or are you upset because it's just reinforced the struggles that your children face and will continue to face as a result of their autism?

There are days when I have to bite my lip and smile sweetly when a colleague expounds on their child's latest achievement: talking, toilet-training, school awards, Brownies/Cubs, colouring a sodding-NHS-rainbow. Our son may never be able to do any of that. Sometimes I leave silently and head for the toilets for a quiet cry. But I wouldn't stop them celebrating.

Find a way to participate that is meaningful to you and your children. Take a video of them playing while you hold up a sign thanking their teachers, or caption the video yourself. If they can, get them to draw a picture of a teacher (could be any adult!) to hold up for a photo. Make the best of this and have a quiet cry

I've got a daughter who, at 18 can now make her views and wishes known.

She could speak but does not enjoy speaking. Finally her carers have helped her develop this in a way that doesn't heighten her anxiety.

I think it's probably something they have,nt thought of tbh the vast majority of children won't be non verbal , I have a non verbal ten year old these kind of things can always sting a bit things such as religion can be quite contentious so I can understand why this wouldn't be something they would ask people to talk about ,likewise people lose their ,mothers and father's etc I expect in comparison. there is only a tiny.percentage of people whose children have severe autism and are non verbal.

@eggysmum

Yep I have a lot of biting my tongue and smiling sweetly while crying inside.
It's a bit shit isn't it.
Depends on the day though I find.

@EggysMom I think that's it, it just stings a bit and I really took my by surprise. The email started off we me going 'Oh yeah, that'd be nice they want us to thank teachers' and then as I read down I got a bit sad really. It was a full on call to action for our kids, with several ideas of what they could do, none of which were us speaking for them.

For context, my department is Department for Education, so it's not as if SEN children aren't on their radar! We also have a very active Parent network for SEN parents and I know they'll similar as it's just another thing our children can't participate in (in the way that was outlined in the original email - I know we can do other things)

I get where you are coming from with this - I’m assuming they are asking for volunteers? Where would the video go when finished, what is the intended audience.
Given that you are in a government department for education I think I would send a very polite email. Something along the lines of you know this wasn’t their intention but that as you have 2 non verbal children it was upsetting for you to get this email. Give an example of it being like the dept organising a sport event for children and your child having physical difficulties meaning they couldn’t take part. Keep it polite and non angry - I don’t think they were being deliberately discriminatory but that doesn’t mean they shouldn’t have their eyes opened a bit about the impact of an email like that.

I completely get this is hard for you. You are allowed to be upset by this, cry, be sad for you and your children.

However we can't live in a world of stopping able people from doing things just because people with disabilities can't do the same. Of course Reasonable adjustments should be made for your son. It should be more than acceptable, in fact encouraged, for him to hold up a sign or you to do a voiceover for him instead. And you are well within your rights to email back and say as I your son is non-verbal you have done X-instead as a reasonable adjustment and look forward to seeing the video with his part included.

But no one should be stopped from doing something just because others can't do the same.

I can't run because of an old ankle injury. Should no organisation in part of organise a sponsored run because I can't run? Or should they hold the event and make a reasonable adjustment that I can walk it instead?

Children with crippling anxiety can't take part in school plays? Should that whole year group or school miss out on a play or should a reasonable adjustment be made such that the child can take part in a way they feel comfortable such as helping paint the sets or being backstage?

It's so hard to be the one left behind and I understand that and feel desperately sad for you and your son and the things he will miss out on in life. But other children shouldn't miss out too when they don't have to. You just have to give your son all the opportunities possible that he can have and ensure reasonable adjustments are made as far as possible to each thing he can't take part in the same as every other child so that he can still be involved and enjoy it as much as possible.

People need mums like you to make others aware. I know I don't know or understand enough about Anyone different and it's so bad. My kids school is ridiculously uncultered (if that's the word) any help is needed!

On another note I think most kids are told what to say anyway so never the kids work or thoughts at all

@letitgolego I'm not saying anything like that at all. My point was that it was emailed round to small groups so it felt like a personal call to action rather than just something I'd see on the intranet or on MS Teams and could just not read/ignore.

It is hard and we've been sending out memos and all kinds of guidance on speaking to colleagues during lockdown, reminders that people wish they could have kids or people might be alone etc. Parents of SEN children are excluded constantly, I don't think there's one aspect of my life that is the same as a parent with two non-disabled children, not one. So yeah, sometimes getting a reminder out the blue is shitty, especially at work which is my escape and my only place of normality. I'm in no way suggesting it shouldn't happen, I think it's a lovely idea. What I am suggesting is just some bloody thought, they lined out so many examples of what we could do, none of which mentioned doing it on your child's behalf. We have an entire department dedicated to SEN children, you'd think they'd want to be a bit more thoughtful and inclusive!

We have an entire department dedicated to SEN children, you'd think they'd want to be a bit more thoughtful and inclusive

I agree @ThisIsMyStory1
What guidance have the SEN department given out for SEN children during lockdown? I would feel so strongly about the continued exclusion that I would have to take it up with whoever is in charge.

I have 2 sons with severe autism, one of them is still completely non verbal. It's hard not to take things personally and have everything remind us of what our DCs can't do, and I think it's crap that they didn't have SN children in mind. But it's also up to ok is to find ways to include them. So it it's a sign or a picture or you talking for them, do it.

And at 7 your DC is definitely not too young for Proloquo2go. My sons have been using it since they were 5 (iPad and app provided by the school). One of them has become quite verbal in the last year so we have stopped using it. My other son has become good on it to express wants and now we're trying to teach him to use it to express his feelings which is more challenging.

@ThisIsMyStory1 Given who your employer is, this is particularly shit of them - and yet, haven't we all come to expect the education system for our kids to be a battle?

I do hope your staff network responds appropriately to the request pointing out that a little bit of inclusivity goes a long way.

If my child was asked to do this I would want to know where the video was going and if it was going external to the organisation. If it is there is an issue with consent for these children and especially your children who can't give their verbal consent.

Wow, considering where you work it is completely understandable why you are upset
I think the person who wrote the email needs to be spoken to and reminded about inclusion

With respect @Skippingabeat regarding apps such as proloquo2go wethe 7 is to young depends on the child my son is ten he's not interested on ipads he would just throw them he used PECs, ,ps maybe something to consider in the future but not right now .