Tuesday, 7 June 2016

Autism parenting: The heart ache of one shoe, my son's despair

Yellow shoes and my autistic child

It's hard to explain to someone who doesn't understand.

Have you ever been so distraught that you can't function? Has anything ever upset you so much that you simply can't cope with anything? Think uncontrollable tears or absolute fear or rage? Or all at once? Now imagine feeling like this because your sister has only got one of her shoes on. That's what  life is like for our autistic son, David.

Jane was bouncing on the trampoline... Boing.. Boing.. Boing

David was playing in the slide.

One of Jane's shoes came off. David went onto the trampoline to recover the shoe and gave it to Jane.

"That's nice," you might think. I too was lulled into a false sense of security. We had visitors but it was family who are known and around often so I thought David was probably coping ok with the day. I perhaps should have been more aware of the end of half term mess that is our boys without the  routines of school.

My eyes sparked a little as David handed the shoe to Jane.  Jane held onto her shoe while she bounced and David hung about on the trampoline looking at what was slowly becoming the terrible incomprehensible picture in front of him. What's going on in his head? I can only guess.

"Shoes only come in twos"
"We ALWAYS put two shoes on"
"One shoe on isn't right"
"Why isn't the other shoe on"
"I'm afraid what will happen if only one shoe is on"
"She MUST put both shoes on"
"There is nothing in the world except the wrongness of Jane with one shoe"
"MUST have both shoes on"

Before I've got close to explaining why one shoe is a problem to anyone else, the problem has exploded.

David has gone from looking slightly worried to showing Jane just how wrong she is for not putting her shoes on. He's gone into a meltdown.. and it's one of the worst I've seen for a while.

Poor David was hysterical.  Tears were pouring down his red face, he was bouncing around, biting his tongue and frantically trying to resolve the shoe situation.  One of our relatives did a great job and removed Jane from the trampoline leaving me with poor David, desperately clutching the shoes.

Meltdowns are not uncommon for people with autism. Sometimes they are mistaken for tantrums, but they are not the same. When David has a meltdown he seems to recover quickest when he is removed from the situation, sometimes given a bit of space and then given deep pressure, usually through big squeeze hugs.  But all of this was difficult. 

David ended up holding both the shoes, and he has a pretty mean grip.  His intent was to chase down Jane and force them into her feet thereby fixing what was wrong with the world. Jane however been fairly uncooperative with my asks to put her shoes on and with the incident happening before I thought it best to try a new tactic - help David accept that the shoes were not going on her feet.  Not the easiest thing to tackle whilst chasing him around a netted trampoline.

His efforts to get to his sister were immense.  He is hypermobile which means it's easy for him to escape my grasp.  He was like a spider trying to get out of a glass.  His limbs lashed out like one of those aliens from Verdun on The Edge of Tomorrow film. I tried to ease his pain by hugging him tightly but this was virtually impossible on the trampoline and I ended up just lying on top of him.

I felt awful.  I once saw a documentary on an autistic children's school in the USA and a parent had layed down just like I was doing during a meltdown and I thought, "Surely there must be a better solution that that?"  And here I was. Never say never, I guess.

Eventually the pressure worked and I was able to carry David out of the trampoline.  As we passed Jane he struggled again and I headed towards my current solution - Jane's shoe storage in her bedroom.  Once upstairs and in Jane's room I took the shoes off David and put them away on her shoe shelf.

David tried repeatedly to take the shoes. Each time the shoes went back.  Slowly he accepted the shoes being there was ok and began to become open to distractions. It easily took half an hour of sitting on the floor with him for him to move on.  Once I'd managed to move him out of the room and back down the stairs the drama was over for everyone accept me.

The emotional involvement in these events is unbelievable. It's just heart wrenching to watch your child suffer like this. I don't know if what I did was right, or wrong... but I feel we have to help him with strategies to cope with things being different. In the end he accepted that Jane wasn't going to wear her shoes and went off to play.  I was relieved that it ended 'ok?' and went off to cry.

Links
Our blog - Tearful transition turns out ok 
Our blog - The slightest change is difficult

External Links
National Autistic Society - Meltdowns

41 comments:

  1. meltdowns are simply awful for both the child and parent. I think you handled it brilliantly. You lay on him on a trampoline so he wouldn't have felt your weight, just your comfort. Sending a big hug x

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    1. Maybe, a bit of pressure usually helps once he's ready for it. I can only be there for him as best I know. Thanks for commenting

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  2. Feel for you, I've been in situations like this where there is no right or wrong answer and you just have to get through it as best you can. It is soul-destroying and distressing for everyone, and totally exhausting. Hope you managed some decent rest afterwards, it takes a while to recover. And then you think 'all over a pair of shoes?!' and you know that many out there just wouldn't understand. All we can do is keep trying to explain. Hugs x

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  3. These types of incidents are so emotionally draining for everyone involved. Thanks for sharing -I think it does help people understand what might be happening when they see public meltdowns - hope you have recovered x #bloggerclubuk

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    1. Yes they are.. All recovered now.. from that at least! Xx

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  4. Goodness me I can only imagine how emotionally drained you must have been after managing your sons meltdown (so very well might I add). I really admire how well you understand your son's thought process and are able to identify ways to help him.
    I don't have a lot of experience of autism and really appreciate the chance to learn and understand more by reading posts like this. Thank you for sharing. Dawn x
    #bestandworst

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  5. I'm going to echo what Dawn said. Its through blog posts like this that I've had my eyes opened to what autism really is and how challenging it must be for those attempting to deal with it. Thank you for that #bestandworst

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    1. Thanks Jeremy, I guess it's really why I started blogging in the first place... Increase awareness and understanding. Thanks so much for commenting.

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    2. thank you for writing and spreading awareness. Back again from #justanotherlinky

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  6. Thanks for giving us an insight into what life is like for you and many others. These little snippets help people to understand, so we can all judge less and help each other more! Thank you (: #ablogginggoodtime

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    1. Yes, I like that idea of helping each other more. That's wonderful. Thanks for commenting

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  7. Oh lovely - that was a very heartfelt post! I dont think anyone can realise what it is like unless it is them. A very brave share - there are so many jokey memes about toddlers having meltdowns because parents have used the wrong cup... but for you its very real.

    Thanks for linking to #ablogginggoodtime

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    1. Thanks yes, my toddler has meltdowns.... It's just not the same! Thanks for commenting, sorry for the tardy reply.

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  8. this is an amazing post, it shows how hard and yet rewarding it all is. I am in awe of your patience x

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    1. I always wish I had just a bit more. Think it comes with the territory. Thanks for the lovely comment and sorry I've replied so late!

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  9. I only know of a couple of people who have autistic kids and Im not very close with them. But I know they are amazing and just have a different way of communicating and expressing themselves! I think mums and dads do a great job of handling these situations when they happen!! Well done such a good post!
    Lx
    http://workingmumy.blogspot.com
    #justanotherlinky

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    1. I think parents hopefully manage to adapt to their kids. Doesn't matter who you are though.. I think parenting involves hard work sometimes. Thanks for commenting sorry I'm late replying.

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  10. This must have been so hard for you, especially when you're not sure if you're doing the right thing or not. I think you did - you're helping him to understand that sometimes things won't be as he likes him, and helping him to cope in those situations
    Thanks for linking up to #BloggerClubUK :)
    Debbie

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  11. Must be so hard to deal with :( I think we all just deal with our children in the best way we know how - trying to use our instincts and knowledge of the child to do what we think is best for them at that moment. Thanks for the insight x
    #KCACOLS

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    1. I've found parents tend to be the best experts in their kids, but everyone could do with a little guidance or support sometimes. Thanks so much for commenting, please excuse the tardy reply.

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  12. Oh lovely I really feel for you. I think you did amazingly from what you write, it is always easy to go with the more obvious solution (Jane putting her shoes back on) but giving him other outcomes is only going to help him cope better in the future, or at least that is what we hope. Meltdowns can be hard for everyone involved, I too have often been flying around the trampoline trying to console Hayden over something trivial like his brother wanting to bounce with him. Huge hugs and a well done for you lovely! Thank you for joining me on #spectrumsunday. I hope you join in again this week :) xx

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    1. Love to be on the linky as always, thanks for your reassurance Clare. Xxx

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  13. My goodness what a moving post. I never appreciated the challenges for autistic children. You have given me such an insight. I hope the meltdowns are few x #KCACOLS

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    1. Job done then. It's not all doom and gloom, today's is a lovely happy post I think. Xx

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  14. It must be really hard for you. I am in awe of how you had to deal with this situation. I hope meltdowns like this are far and few between.

    Thanks so much for linking up at #KCACOLS. Hope you come back again next Sunday

    Rachel x

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    1. They are a lot less, and now mostly only with one child at a time and that makes a big difference. Two at once was a disaster! Thanks for stopping by.

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  15. A fascinating insight in what I imagine can be a very tough world. You are clearly a very strong and admirable person and thanks for sharing such a personal post with the #bestandworst

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  16. Oh my goodness, I first want to thank you so much for opening up a bit of your life to us. I can't imagine how difficult meltdowns must be to handle, but I think you did brilliantly. You seem to have deep patience, but I hope these don't happen often-it must take so much energy. #KCACOLS

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  17. My step-brother has autism so I have witnessed just how hard and challenging it can be when something like this happens. You handled it brilliantly! #justanotherlinky

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  18. I don't have any experience of Autism my daughter does have some awful tantrums but usually when overtired.Sounds as though you dealt with it really well though x #kcacols

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  19. I think you did a great job - the trampoline is moveable so lying down on him whilst on there wasn't an unsafe thing to do and provided the pressure he needed. I have had some experience of autism with different children I have taught in reception. Once you fond certain strategies it becomes so much easier - but getting to that point can be really tricky and such a steep learning curve - it is easy to feel like you have failed on the journey to the answer. It's important to keep talking about it though so that others can understand too X #KCACOLS

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  20. I don't really have any experience of autism so it's always interesting to read blogs like this. Interesting is the wrong word... It just sounds like such a mine field, it sounds like you're doing an amazing job xxx #KCACOLS

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  21. I honestly don't know much about autism and I don't think anyone does until you live with and around it. Posts like this make people understand a bit better about what it is and what families with it in their family have go on in their lives. Thanks for linking up to #justanotherlinky xx

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  22. Sounds to me as if you handled this difficult situation really well. You are full with compassion and so wonderfully patient to your sons needs. Like you say, he can't help it, so finding the right way to deal with the situations are key, and I think your doing great! It can't be easy and having never had anyone with autism in my life, I can only imagine, but sharing your stories the way do you, will help us all to be better informed and more understanding of autism. #coolmumclub

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  23. Oh bless you lovely! You must of felt so drained.
    Thank you for linking up to #justanotherlinky

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    1. It does feel low, but I look back at what he achieved this time. He accepted a different outcome and that's a win, an exhausting, tearful, emotional win.

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  24. Thank you for this insight into what must have been a very stressful but sadly not uncommon situation for you. Sounds like you did exactly the right thing and managed to work past the situation, no easy feat. You're an amazing mama. #EatSleepBlogRT

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  25. I can't imagine how heartbreaking this must be or how difficult. But I do think you handled the situation in the best possible way and although you were broken at the end, at least David went off to play happily. You are an amazing mum and doing a great job xx #EatSleepBlogRT

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  26. Putting the shoes where they belong, genius! Sometimes explaining things to my son helps. But even after he gets over it, for weeks and months to come. He will bring it up at random moments. How "sis has to wear 2 shoes"... lol

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