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ASD support needed with grandparent

23 replies

SENSadMum · 02/08/2018 08:25

I have name changed! Firstly, apologises for the long post. We have just returned early from a trip to visit my mum. She lives far away so we only normally go once a year. We have three children, one with ASD aged 7 . During our time there I was not feeling great so forgot to tell our son what was happening each day and took my eye off the ball. On our second day he had a huge meltdown. I handled it very badly. I did not take him away from everyone and everyone was trying to restrain him and shout at him. He hit, spat, pulled hair etc. I eventually told everyone to leave me alone with him and calmed him down but the meltdown lasted well over an hour. It turned out he had been anxious because my mum was going out for a few hours and he had not wanted her to go. My Mum said she had never witnessed anything like it before. She believed because he had fleeting moments where he was calm she believes he was just having a tantrum. She suffers from high blood pressure so I decided we just needed to go. Following on from the meltdown he eventually returned to his adorable, affectionate self but I just feel my mum does not like him. Her perception of autism is what she has seen on the TV and because he is so bright and articulate I honestly think she believes he will outgrow it!!! He also hates walking so at times my husband will put him on his shoulders. He loves parks and playing but generally walking for walking sake is something he does not like. She believes we give into him to easily. I also slept in his room as he is extremely sensitive to unfamiliar noises, different bedding, pictures etc. I don't think she got this either. At home I do not sleep in his room but to be honest if he needed me to I would. She has suggested next time I visit we stay in a cottage! How can I help her understand him?

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Sirzy · 02/08/2018 08:51

You need to sit down and talk to her. It’s all second nature to you so you know him like the back of your hand, if she rarely sees him then it isn’t going to be hard for her to understand things and to know how to respond.

SENSadMum · 02/08/2018 09:15

I have tried but I honestly feel she cannot see this is his autism and not him just being 'nasty '...her words. :(

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junebirthdaygirl · 02/08/2018 09:23

I have a friend whose ds has autism and his gm was the same. They lived nearby so she constantly had to listen to..oh he just needs better discipline etc. Very upsetting.
All the things you listed are common in a lot of dc with autism so could you print out some stuff and send it to her.
Also if you have his diagnosis and assessment results with recommendations in how to manage him could you let her see that as might let her see what professionals suggest.
You are doing nothing wrong. Whether she changes depends on her personality: willing to learn or stuck in her ways.
A good gm is a great addition to a childs life with autism..and his mother so hopefully she comes round.
Saying that , even if it was a tantrum surely she is not putting ye out of the house for one major episode.
Do you have siblings who could explain to her as your emotional involvement makes it tough.

SENSadMum · 02/08/2018 09:59

We do not live close to any family so they all see him but this was the first any of them have experienced a major meltdown. When visiting him in his home environment he just presents as a quirky boy. When we visit other family we only stay a few hours and he is normally a little clingy but happy enough. The EP report is years old and just made reference to school. I think she is stuck in her ways and very influenced by what she has seen on TV or friends have told her. I have bought lots of books to help his classmates understand him, I just wish their was something for grandparents.

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tartanterror · 02/08/2018 10:03

This all sounds familiar except it’s grandad who doesn’t get it. Seeing as he’s likely undiagnosed ASC it can turn into 2 awkward people at loggerheads if not well managed. It’s partly a generational thing an partly a training need. If you find a course for grand parents do let me know!!

HardAsSnails · 02/08/2018 10:11

Mike Stanton's little book 'Learning to live with high functioning autism' is a really good read for people who don't really get it.

It is hard to understand how a seemingly capable and cognitively able child can 'behave' in such a way. I wonder if it would help if she knew autistic adults have the same struggles as your ds? Maybe find a blog or article that explains it from an autistic perspective?

SENSadMum · 02/08/2018 13:43

I have ordered a copy of Mike Stanton's book. I will read it first and maybe even go through it with a highlighter. I will also investigate blogs. I just feel so hurt. I know generally people have a hard time understanding autism but I really did not think this would be my Mum.

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Fairylea · 02/08/2018 13:54

I think actually yes provide all the links and literature you can but I also think you need to be really firm with your mum about this. It’s hard because you feel sad and that’s understandable but I think you need to be more matter of fact - if she says he’s “nasty” I’d just say “no he’s not he has autism, have you read any of those things I sent you?” Keep it factual as if she’s basically said the world is flat. If you get emotional about it she will think there’s some truth in what she’s saying.

We have this all the time with various people in our family. Ds is 6 and attends special needs school and is on high rate dla, so you’d think they would stop going on!

SENSadMum · 02/08/2018 14:08

She told me today that she has bruises on her arm from where he bit her. She was rather cross about it. I explained that he hated to be retrained and was just trying to escape. I apologise as again all of this was my fault. He was not trying to hurt her. I am just so upset with myself as she told me to leave her to deal with him and I did. He does not want to talk about it but did ask when we could go back to visit again. He said he had a lovely time. Once the meltdown was over he can't really remember what happened. The drive home was 10 hours and he was amazing. Fairylea...my son also gets DLA (middle rate) but does not have a EHCP as his school are great with him but if that support was removed he would not cope so we are hoping to apply for one next year.

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SENSadMum · 02/08/2018 14:20

*restrained not retrained

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Fairylea · 02/08/2018 14:33

In some ways I think you need to stop apologising. She is being unfair- instead of moaning about him biting her she should be feeling sorry for you (and him) after having had a massive realisation that this is what autism actually can be! I don’t think any of this is your fault, this is just autism at its finest! I think your mum is being really unkind and unfair. Some people can just be so ignorant, but like you say you don’t expect it from those closest to you.

SENSadMum · 02/08/2018 19:00

She just stressed how wonderful my other two children are. However, they do not have autism! They love adventure and change. She actually feels my son is 'nasty' and 'lazy' and that I encourage this. I love my mum so much but this whole situation really has really upset me. I don't know where we go from here. It is clear we are not welcome to stay at her house again.

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Branleuse · 02/08/2018 19:11

I had similar attitude from my dad when he witnessed ds1s meltdown a couple of times. He doesnt believe in labels apparently and its learned behaviour.

Consequently i dont take the children to visit him :(

grasspigeons · 02/08/2018 19:24

That must be so hurtful. I think a lot of people really struggle to get what autism is and just see it as 'naughty with rubbish parents' but your mum needs to learn quickly now. she should be feeling sad that his life is a little harder and love him more for it! and sorry that she hadn't read up and looked at autism friendly ways of doing things to support you.
Have you got a sibling, uncle, cousin or someone who could talk about it on your behalf with her as I am sure you need your mum!

SENSadMum · 02/08/2018 20:22

There is nobody that could really talk to her. Even my husband struggles to totally understand him. I spend my spare moments reading endlessly about way to make life easier for him but feel I am pretty alone in my mission.

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CaptainKirkssparetupee · 03/08/2018 07:52

I'm sorry but she sound horrible and extremely arrogant at not even trying to understand, I hope she's not saying horribly nasty things in earshot of you children.💐

LightTripper · 03/08/2018 15:54

I'm sorry this sounds such a hard situation. There are quite a lot of books and resources aimed at grandparents, including quite a bit on YouTube. I'm a big fan of YouTube for this stuff because I think it's hard to see a real person talking to you and not engage with what they are saying.
This includes some autistic people reviewing books about autism (one of my favourites "Not So Neurotypical" here: and then also there are some talks aimed at grandparents too (e.g.

Anyway, might be worth a browse if she's the kind of Grandma who would watch something on YouTube.
www.youtube.com/results?search_query=books+grandparents+autism

SENSadMum · 03/08/2018 18:56

The thing is my mum is a wonderful mum. She would do anything for anybody but I think our son has just thrown her as he just does not respond in the way she would expect a child too. She is lots of fun and very laid back. However, our son likes predictability and to feel safe. I doubt we will see her for a while now due to the distance but I think the time apart will do us good. I have sent her this link . I really hope she is open to learning and understanding more.

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SENSadMum · 06/08/2018 15:46

I just thought I would update you. My mum has been watching lots of YouTube resources and has even forwarded them onto other family members. She has apologised and I really do think she is starting to understand.

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CaptainKirkssparetupee · 06/08/2018 16:27

That's great, how fantastic!

LightTripper · 07/08/2018 15:13

Woohoo!!! I really hope this is the start of a new chapter.

I know I found YouTube so so helpful as you can see real people who present as "normal" but still describe some real challenges in their lives. You can also see that different autistic people are so different to each other - it's not just that monolithic idea of the anti-social genius or flapping mute that's so often presented in the media. There's nothing like seeing real people online to shake those stereotypes out of your head xx.

LightTripper · 07/08/2018 15:18

Is it just me or did I write that really badly? Anyway, I feel like it came out wrong. Sorry. First sentence and final sentence still stand!

grasspigeons · 07/08/2018 15:48

I'm glad your mum is starting to understand. Hopefully she will become supportive again now.

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