Yes, we are off. Back to London…well, sort of. We are doing our best to stay on the outskirts and only venture into the chaos briefly. So how did we find ourselves back in the mess?
A couple of months ago I got a spam email about Autism Show 2017. No, I do not like or endorse the darn thing. It is depressing actually. Walking around this decidedly un-autistic-friendly (well except for the one sensory room display) snake-oil show. With ‘experts’ trying to fleece desperate parents. Promising things they cannot deliver. And perhaps is even harmful to the #actuallyautistic person.
BUT PanKwake does like getting her sensory toys there. We took her a couple of years ago. And she liked it. She likes being able to try them out…playing with them first is something that is not possible with Amazon or other online stores. She likes the variety of options there. And she loves the immediacy of walking away with a bag of them.
I made the mistake of mentioning it to her…assuming that since she had refused to go back to London in the almost year we have been here…that she would pass it up. But I had forgotten that she has been begging and pleading to go to LegoLand with Pineapple and Cookie Monster Jr too. So it was the chance to kill two birds with one stone…well one train trip anyway.
LegoLand of course has other fond memories for me. It was the final test I set for Cookie Monster…taking him there with PanKwake and her carer a little less than a year ago now. Of course…he passed with flying colors. Even on the train back into London packed full of drunk Rugby fans…with our sweet, innocent looking carer threatening to shove someone’s head where… if they woke PanKwake up.
And of course, my favorite picture of the two of us came from that day too. To my Crazzy self this is our ‘wedding’ pic. So I am looking forward to another round of it…with new friends this time. Of course, Cookie and I agree…we will do our best NOT to repeat that photo.
Since I am going to be away though…I thought I would pull out some old blogs. Repost them from PanKwake’s old blog to this one. One of the reasons I do that is because sometimes I think our new friends here in Swansea and online think that we don’t understand…that we don’t get it…that PanKwake’s Pathological Demand Avoidance is not ‘that bad’.
So I am sharing our dirty laundry…those tough times when I thought I would never get through…even though I was doing all the same things I do now…
- Putting my child’s needs first, last and always.
- Listening to her not the ‘experts’.
- Fighting for what she needed…not what society expected from us or the handouts that government was willing to toss our way to get rid of us.
- Never letting her see me cry.
- Doing whatever it took to give my multiply neurodivergent child the best chance at a HAPPY and productive life…even if it killed me.
- With NO regrets.
None of that has changed. Just now I am not doing it alone. And yes, I won’t lie that makes all the difference to me.
But the truth is that no matter how large a personal budget, even if the council had relocated us out of London, or if there was a school who would educate PanKwake the way she needed and keep her safe from bullies…none of those things could have made us as HAPPY as the love we have with Cookie here in Swansea with these new friends.
Government cannot ever replace community…
That is what was missing for us. Relationship…community. We have found our tribe now…and that has made the difference.
And time too…maturity…just plain old growing up. PanKwake will always be autistic. That is why it is called a lifelong condition. But all those things that I was doing and giving her back then…all of that…it just took time for her brain to grow and develop. To gain the executive function, to self-regulate her sensory needs, and to communicate those better.
I knew even back then that would come with time…I think you will see the optimism through the pain…even then.
Our path from there to here was not short…it was not straight…heck, some of it was all uphill…and I was pushing her buggy to get there too. But dang…the best view is from the top…and this is ours now…
But it was not always like that…there was a time when all I had to hold onto was hopes, dreams and faith…for a better and brighter day. I hope this glimpse into that time will give you that too…until your time comes. And it will. If you just hold fast, do what you know is right…and don’t give up hope. It will happen for you too…I believe that.