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

It's hard to explain a meltdown 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