Why it’s all worth it

A few days ago, we had a terrifically awesome day. Yes, it was that good that I have to throw good grammar out the window to tell you about it.

I took my 5 year old son to the first of his school transition days and he had a great time. Later that afternoon Daddy and I took him to the local playground, along with his little 4 year old brother. We all played “chaseys”, taking it in turns to chase and catch each other with a big tickle and hug when someone got caught.

Those of you who have ‘normal’ children (is there such a thing anymore?) are waiting for the punch line. You’re reading the above and thinking, “okay, that’s the background, where’s the good bit?”
That was it.
The above paragraph sums up a momentous occasion (several actually) in the life of my 5 year old son who has severe autism.

toy soldiersYou see, three years ago, that very same boy would sit at a table for three to four hours, lining up little figurines and staring at them through squinty eyes from 10cm away. He paid absolutely no attention to anybody else, unless you happened to move his toys – then he would scream and move heaven and earth to put his precious toys back the way they were. He would NEVER look at your face and you could scream his name as loudly as you wanted to – he wouldn’t seem to hear you.

Leaving the house was a nightmare. It would take up to half an hour to get his shoes on – most of the time I lost that battle, or just let him wear his rainboots on the wrong feet. As soon as he saw the car, he would scream, and continue screaming and flailing his arms and legs while we tried to buckle him in his seatbelt. The one with the special safety clip so he couldn’t get his arms out and get out of the seat – I wasn’t going to risk THAT happening again!

I avoided going in the car for months as I simply didn’t have the strength for the battle to get him in there safely – and I had the bruises to prove it. Thankfully, after a while he became quite fond of the car, so we could get him in it much more easily. He then started screaming when we got him OUT.

Once the doors were opened and I got him out of the car seat, my hypervigilance would kick in. He did not hold hands or stay in his pram. As soon as he was free, he would bolt, and as he had no sense of danger, he would bolt in front of moving cars. So I would keep a death grip on him while trying to organise any other children I had with me and lock the car. Thankfully one of my older daughters would often take my younger son in his pram, or I would only go out if I had another adult with me.

Then there was the issue of ‘going inside’. My boy was happy outside. He was not happy inside. He would develop claustrophobia at the sight of a hallway or a small, enclosed room. After our first appointment with the GP, we were told we could leave our son at home and just come in for his appointments without him. Shopping centres were a nightmare – people everywhere, loud noises, moving doors, too many bright objects – it was just a matter of counting the minutes until the volcano exploded.

Playgrounds were minefields. Yes, they were outside, but if they weren’t fenced, I had to be prepared to dswingso life or death sprints to stop my boy from running out on the road. We could only go to fenced in playgrounds – not so easy when most of them aren’t fenced. Even then I had to be within arms reach as my over-excitable boy ran from one activity to another. He didn’t understand that the child on the swing wouldn’t just magically stop in mid air to avoid a collision with him, or that it wasn’t okay to shake another child out of the swing because he wanted a turn.

Playing together just didn’t happen. It was always solitary play – he didn’t need or want anybody else to play with. Other people were just in the way, or objects to be moved around at his whim. He ignored his little brother, unless he thought he could steal some food off him. He hated physical touch like hugs and kisses – he would tolerate deep pressure if we did it with him wrapped in a blanket or mat.

We have spent the last three years working HARD to help him change all that. Yes, he still runs off – within the last year he has twice run out on the road and stood on the white lines watching the oncoming cars with glee. I still get PTSD every time I hear a car horn – the first thing I do is a mental run down of where my boy is and if I don’t know, I panic. We now have a front gate that slows him down, yet I still get the shaking and fear when I hear car tyres squeal.

He loves cuddles and tickle games and graciously allows me to kiss his forehead when I ask for a kiss. He’s realised that other people provide possibilities for fun, not just food. We’ve done gradual exposure to new environments and he is now a dream to take shopping (better than his little brother as a matter of fact). We’re prepared for new, noisy environments and so far he’s been fantastic.

He has started playing with toys. Not just lining them up, but actually playing with them. I’ve helped him dress up 3733 Teddy Bear Tea Party Floralteddy bears and dolls and watched him set up tea parties for them (although he’s not sure what to do after he’s set it all up LOL). He has decided his favourite game is peekaboo and he loves nothing more than jumping out from under the blanket and ‘surprising’ me. His toys have to hide, too and I get the fun of finding them (as long as I do it right). He will happily hold hands when I tell him to and is much less likely to run away from me when we are out and about. He’s learning to wait and take turns – small steps at a time.

So can I take you to the momentous occasion above and get you to read it with new eyes?

I took my 5 year old son to the first of his school transition days and he had a great time.

He went to a brand new place, walking through hallways, moving from one room to another, in a very bright, stimulating environment, with other kids in the room. He did not lose it. He explored the room, coming to me every few minutes for a deep pressure hug, with a huge smile on his face and his eyes closed as he enjoyed the closeness. He played in a busy playground, and came inside when I told him it was time to come in. He waited patiently when another child wanted to play with the toys set out for him, and then took his seat calmly.

Later that afternoon we went to the local playground, along with Daddy and his little 4 year old brother.

We went to a playground that was not fenced in, on a day he had already had a lot of stimulation and new things to deal with.

We all played “chaseys”, taking it in turns to chase and catch each other with a big tickle and hug when someone got caught.

He eagerly waited for his little brother to catch him and squealed with delight when he was caught. He turned around and looked me in the eyes (are you crying yet, because I am?) and SAID, “catch you”. My nonverbal boy who has only been speaking for the last 6 weeks told me he was going to catch me. He then chased me down and dragged me down to the ground so he could wrap his arms around me to give me a huge hug. And we did this over, and over again.

THAT is why it’s worth it.

The PTSD, the sleepless nights, the poo smeared walls and furniture, the never ending research. That constant scanning of the environment to avoid any triggers or be alert for any dangers – Autism mums are better trained at that than the Army. The screaming, spitting and throwing of food, punching, hitting and kicking that happen all too frequently. The daily destruction of anything that’s not locked down – and a lot of things that are. The thousands we pay for doctors, testing, supplements and special foods, that have sent us broke.

Because it’s all worth it when your little boy looks you in the eye with a cheeky grin, and says, “catch you”.