No, not that one, the other one.
There’s a lot of It needed when you start factoring autism into family life. It is well documented that all parenting is hard work, but the extra challenges that come hand in hand with additional needs can often push you to breaking point. Then you also have the regular stuff to deal with on top. Which is where the A word comes into effect.
There is plenty that I’m prepared to accept, and some things that I point blank refuse to.
The double edged sword of stimming
“Self-stimulatory behaviour, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders.”- from Wikipedia
I completely understand that P needs to stim, in order to feel calm. I will accept and support and encourage her to do so in a healthy way. Certain stims, such as hand flapping and jumping on the spot, are almost always the precursor to a meltdown. They are a great warning sign for us, because if we manage to distract her away from whatever is causing her irritation while she’s still in the stimming phase, then we have a good chance of averting the meltdown. Always a win.
What I’m not prepared to accept or encourage is what the wonderful Kirsten Lindmith refers to as the Dark Side of the Stim
You might be wondering why a parent would want to ‘train their child’ to be anything other than their natural self, but when their stims involve hurting them or their siblings, I feel it’s my duty to help channel that energy elsewhere.
As Kirsten says in a way that I could never articulate (after all I have less than one year under my belt of officially being an autism mama) not all stims are created equal.
P used to pinch herself, and her brother and sister. A lot, and hard. She would do it in such way that I don’t think she even realised she was doing it half the time. For a long while I was at my wits end about this, but can now see that she was (is) stimming. For years I didn’t understand why she was doing it, and now that I do, I feel quite enlightened.
I totally appreciate that she feels the need to pinch, that she’s sensory seeking, so rather than trying to train her out of it, I get her to pinch something else. Anything else. The operative word here being ‘thing’ not living, breathing person. We came across a brilliant sensory toy called play foam, which is thousands of teeny tiny styrofoam balls connected together with a non-toxic glue like substance.
She can pinch it, twist it, pull it apart and fiddle with it until her heart is content. It’s been a huge hit, and we’ve seen a dramatic decline in pinching when she has her little play foam ball at her side. I always make sure she has it with her when she’s watching TV, because at the point where she inevitably starts to get bored (under stimulated) her default is to start pinching.
Licking things in public places
One thing I will never be able to condone is licking things when we’re out. As we’re a non-driving family, we catch a lot of public transport, and every time we do, P will try and lick the rails and windows. Filthy dirty metal, plastic and glass, that hundreds of thousands of people touch every day.
My stance on this has absolutely nothing to do with what other people think of us, because believe me with my history, I genuinely couldn’t care less about what a stranger thinks. It’s also not because I’m a sterile clean freak, seriously you should see my house most days. It’s because autism and a poor immune system seem to go hand in hand. Whilst I actively encourage her to make potions with soil in the garden, and get covered in mud, I’m not so keen on playing Russian roulette with her health by letting her lick things.
The only way to stop her from licking is by ensuring she has activities for the journey that will keep her fully focused. Reading doesn’t work for her at all, as she finds it way too hard to concentrate with so much background noise. Sometimes we play a short travel game such as mini snakes and ladders, but usually we give her the tablet to play a game or watch some TV. This way we know that she’s happy with her end of the deal, and it keeps her frustrations at bay.
Although they are pretty indistinguishable from each other to the naked eye, a sensory overload meltdown is not the same as a toddler tantrum. A toddler will have a tantrum usually because they are unable to communicate their feelings. An autistic child will have a meltdown when they are feeling overwhelmed by life. This is why we made the decision in November to start home educating, because it was apparent that school was causing P a lot of anxiety and she felt overwhelmed by it.
Since we’ve been at home, we have kept life as low key and trigger-free as possible. For the most part anyway, the couple of occasions that we’ve left the house without a clear cut plan, or stayed out that little bit too late, it has ended in complete disaster. Put simply, it’s just not worth it. So we have accepted that this is the way things will be for the foreseeable future, because if it keeps our lives relatively meltdown free, then it can’t be a bad thing.
– Taking P off on her own for some undivided attention (the most effective, but most difficult to achieve, because I’m parenting solo during the week)
– Jumping on the trampoline
– Building a tower out of wooden blocks and knocking it over
– Practising gymnastics
– Colouring sheets
It’s what makes high functioning autism so bloody hard
I always come back to this thought: the higher up the high functioning end of the spectrum you get, the tougher life seems to be for them. P feels the pain and injustices of childhood so much deeper than her peers, but her struggles are invisible to them. Unless she gets overloaded, and then they treat her like she’s a baby.
It’s my job as her mum to equip her with the tools she needs to cope with these feelings, but never ending battles within the home can make it impossible to do anything else but fire fight.
The popularity of my recent post about HF autism parenting leads me to believe that I’m far from being on my own when it comes to my thoughts on these matters. It’s difficult to not end up feeling like a lone voice though, when every other post I read about autism is so shiny and positive. It can make me feel like it’s my attitude that is wrong, and with a little bit more acceptance all would be much rosier. Perhaps the writers of these articles have less kids, or get more sleep than I do, or aren’t quite as broken as I’ve been. Or perhaps they’re just cut from a different cloth to me.
I don’t love my daughter any less because I choose to write about autism in an honest way. I refuse to only write about the good bits, because that is not a true account of what’s going on. This attitude in general just perpetuates the idea that everyone else is doing a much better job and having a much better time than we are.
I will be her biggest advocate until the day I die, and I’ll go above and beyond the call of duty to ensure that she thrives (not just survives!) in this world. I will never stop learning so I can understand my girl as best as I possibly can.
I’m taking a leap of faith that by continuing down this road, we will eventually have a much happier family.