Autism, the silent disability.
Why do some people have do be so horrible?
I just don't understand, and frankly never will.
I know I've been at the brunt of some malicious behaviour, but what has happened to my daughter over the last two days beggars belief.
My grandson, P, is autistic and non-verbal.
P is five years old.
He has some classic visual autistic behaviours - hand flapping, not engaging with other people - when out and about, but does not generally create a disturbance.
P is handsome, so loving to those he knows, and despite having been born with some brain damage, there are signs that he is making some progress with learning.
He loves to watch 'number blocks' and tries really hard to copy the counting, and copy words we say to him.
Now let me tell you what has got my dander up.
Over the last two days, my daughter has had THREE episodes where strangers have been really unpleasant to her regarding her little lad.
Firstly, on the first trip to the supermarket she has made with P in weeks, a man stopped and asked loudly why 'a child of that size is sat in the supermarket trolley'!
My daughter answered by saying that P is autistic, and was sat in the trolley for his safety and security as he doesn't understand the social distancing rules. The man walked away, muttering under his breath.
Secondly, when they were out having a family walk - near their family home - P got anxious and started to make some loud noises and hand-flapping gestures.
My daughter began a calming-down routine with P, but was interrupted by a woman who told her that she should walk away and 'embarrass him to stop him whining'.
Again, daughter had to explain about P's disability and the woman stopped having a go at them and walked away.
Then finally, as daughter pulled up at our house (we have been having the grandkids for respite and childcare since the beginning of lockdown as both daughter and her husband are keyworkers, and in addition, P does not sleep well - some nights they get three hours if they are lucky...) the next-door neighbour said very loudly to her mother who was visiting: "Here they are again - they are here every day!" To which her mother replied loudly: "Well I hope they all get COVID for being so F***ing stupid!"
Daughter turned and asked - are you talking about me? To which the next-door neighbour snarled "It's a private conversation love.."
Again, daughter explained that P is autistic that we give respite and childcare, etc, which is why they are here every day.
But why should P's disability have to be explained like this?
Why are people so Bl**dy rude and horrible?
By the time my daughter got from her car to our front room (about 12 feet) she was shaking from head to toe and crying.
I am so, so angry about these incidents.
What are your thoughts? Any advice?
Tracey xx
Oh, that makes me so angry. Your poor daughter, it's so unfair and so unnecessary.
ReplyDeleteBeth used to do the same thing when Alex was criticised and, generally, people backed down, but it shouldn't happen in the first place.
I know it's no help, but I understand both the distress and the fury.
Hugs
xx
parent and grandparent of those on the spectrum , by now i have developed rhino hide on people commentating on their behavior , but first time round its hard you take it so personally, has your daughter joined any of the online or local support groups they can be endlessly helpful
ReplyDeleteMy thoughts Tracey are don’t give these nasty people too much head space. We have for the past few weeks been seeing eldest daughter and her family after grandson developed acute eczema due to the stress of not visiting....they were at ours nearly every day and his little world had crumbled. He was raw all round from trunk to thighs and pickled everywhere else. They had already moved most of their things to ours as they were due to move next door to us. They will be moving in as soon as their sale goes through before living next door. I feel I need to explain myself...I shouldn’t have to. Hubby and I think we both had the virus. My instinct is to protect in the best way I can. I used to work with adults with learning disabilities and am now in an elderly care setting. Do what you need to do to protect your family. There are an amazing number of knowledgeable un educated idiots around. x
ReplyDeleteI am so saddened by these dreadful comments and incidents. You shouldn't have to explain behaviour of any form. This pandemic has brought out the best in some with their kindness and yet still so much ignorance. All I can do is send you my love and know that I am praying that an understanding will develop amongst the ignorant. Take care.
ReplyDeleteMy sister has a grandson who is severely autistic and she and hubby have also been providing respite care during the pandemic. Her son and his wife own a large supermarket and so are considered to be essential workers. They all live in small towns - my sister has about an acre of land - they rarely go into town and have not socialized with any friends plus there have only been 10 cases in the whole county and they only mix within their tiny family group.
ReplyDeleteMy sister acknowledges that technically they shouldn't do this but what else are people to do at the moment. If things got worse in their area my sister would stop this limited contact and he would be cared for by his other grandmother who can live in.
You would think that people would be getting kinder these days but instead they seem to be getting meaner.
Take care.
People can be so nasty! Please tell your poor daughter to ignore them. She knows what is best for her little boy. I know it can be so upsetting to have your child or your parenting criticised, especially by outsiders who don't even know your situation. She doesn't need to explain herself to anybody.
ReplyDeleteAlso, anyone horrible enough to wish Covid on people really isn't worth upsetting herself over. Sending hugs to you all.
Oh your poor daughter, I can understand how furious you must feel on her behalf. It's easy to say to take no notice but very hard to do. These people are so uncaring and judgemental that they don't deserve an explanation and the neighbour's comment beggars belief. Karma will visit them and it will be well deserved. I can't offer a solution but my heart goes out to you and your daughter. Sending hugs your way xx
ReplyDeleteTracey, I was so sorry to read your post. I feel for you all. I wonder which county you live in as I may be able to offer some contacts. First of all, your daughter may not always want to interrupt her strategies to explain to rude people what is happening. We used a card when taking children out to hand over at times when we had to give physical support and could not stop to explain. She could reduce her interaction with something. The “Thank you for stopping. “ may not be advisable with some people like your ghastly neighbour. They’d deem it sarcasm.
ReplyDeleteThank you for stopping. My son needs some extra help from me right now because of his autism. If you’d like to help us you could …………
Thank you for stopping. Things may look a little odd to you but my son needs some extra help from me to keep him safe/to help him calm because of his autism.
Now some links to reassure her that she’s not alone in this.
https://www.theguardian.com/lifeandstyle/2013/aug/16/children-disabilities-special-needs-mumsnet-campaign
https://www.mumsnet.com/campaigns/this-is-my-child
Here are some organisations with lots of useful stuff.
https://www.challengingbehaviour.org.uk/
https://pavingtheway.works/
http://www.kidsbehaviour.co.uk/
http://pbsacademy.org.uk/
https://www.contact.org.uk/
This is an American site but has some good stuff and I’ve added a grandparent brochure for you.
https://www.autismspeaks.org/
https://www.autismspeaks.org/sites/default/files/2018-08/Grandparents%20Guide%20to%20Autism.pdf
My very best wishes and greatest respect to you and your family.
As a Mum of my son son with autism and non-verbal, I can so relate to all this.
ReplyDeletePeople can be so horrid and more than once I have nearly ripped heads off from comments that have been directed at my lovely and innocent boy.
I know it's upsetting but the only advice I can give is that once your daughter has explained P's condition then the problem is with the other person if they don't accept it.
The problem we have now is the next door neighbour no longer speaks to us as my son climbed into their garden once. He has no concept of boundaries etc and we explained all this to them. Since then, we went from being quite friendly to them snubbing and ignoring us.
We see this as their problem not ours.
Hope you are all okay x
I'm not surprised your daughter was so distressed by her confrontation with your neighbours in particular- clearly they were brave enough to bitch, but not brave enough to be honest about it. Personally with them I would be inclined to pop a note through those closest explaining that you have become aware of some local gossip which you seem to be at the centre of, and following a quite unpleasant verbal attack on your daughter, you wish to explain to them all that the situation is X (as it is) and that if they have any further issues with this, you suggest that they either a) take it up with you or b) feel free to report you to the local police - and you will happily explain to them. If they are not content to do either of these things it doesn't say much for their viewpoint, does it! In normal circumstances I would agree that not engaging would be ideal, but in fairness at this time it could be that some of their anger is fueled by concern - although they aren't dealing with it very well if so!
ReplyDeleteAs the mother of a young man with autism and learning difficulties I have huge sympathy for anyone facing this type of abuse. Strangely enough, the worse comments I ever had to face came from one of my son's teachers who just didn't 'get it' and told me to my face that his behaviour was due to my bad parenting. It was very satisfying to remind her of my impeccably polite, straight A daughter, who had also been in her class a few years earlier and remind her that she had no complaints about my parenting then! Thank goodness there are kind, caring, lovely people to balance out the bad. X
ReplyDeleteJust got to say, how dare any of these people! Just wrong, they should be ashamed. Take care.
ReplyDeletePeople are just A holes and uneducated!!
ReplyDeleteU and Ur daughter are doing a wonderful job and P sounds like he is doing well despite the uncertainty of lockdown. My non verbal son loves number blocks too, alphablocks not so much but he's getting there with his letters, x
I also have an autistic grandson, my daughter has a blog and Facebook page where you can meet like minded people it is www.aandme.co.uk. It is hard when people criticise, you have just got to grow an extra thick skin. None of us knows what our daughters are growing through until we walk in their shoes.
ReplyDeleteHi I was looking for something else and came across this, my daughter has had the same problems and Rhys is about the same age as your grandson, she now writes a blog A & Me
ReplyDelete