I refuse to celebrate one thing about my autistic child

Since the word ‘autism’ was mentioned to me it feels like I have been forced the other side of a window watching the masses celebrate their children’s typical achievements while my beautiful little girl seems to not move very far forward. 

The autism/special needs community is all about revelling in the little things that the parents of typically developing children take for granted or even overlook. 

I do this to a certain extent. I have been known to victory dance at Dinky trying a new food. Or over celebrate certificates from her special school for sharing a toy, or being a good friend to a class mate. At 7 most parents would scoff at their child receiving such a certificate but hey, it is a step forward for Dinky. 

However there is one thing that the school have been known to celebrate which I will never do and quite frankly will never do. 

Dinky has PDA, which means her anxiety is so high that she finds it really hard to comply with demands made of her. 

Now that Dinky is settling in at her new school, and a mixture of them using the right PDA strategies and the start of ADHD meds, she is starting to be able to sit for longer periods of time and do some of the work. 

School are celebrating this. Me, not so much, but I do celebrate in another way! Let me explain. 

This is what/why I don’t celebrate

  • Dinkys new found ability to ‘cope’ is just that, it is coping, she isn’t enjoying herself but is merely holding all that anxiety in and exploding or retreating into herself at home or later in the day/week- not exactly a win
  • Dinky is not a big fan of being rewarded for compliance and therefore I don’t think it is appropriate that I celebrate her complying at a cost to her own wellbeing. 
  • Why celebrate the act of complying, surely the outcome of that is vastly more important! 

And this is what I celebrate, 

  • I celebrate that Dinky has been baselined in most areas for the first time in education and that now we can actually monitor progress, because she managed to complete some testing. 
  • I celebrate the fact that she is making progress with the speech and language therapist because she will now attend the sessions
  • I celebrate the fact that she can formulate a ‘d’ properly now as she is better with with being taught- (hopefully we can sort the capitals in her writing next)
  • I celebrate that for the first time she has been assessed properly, and even more so- celebrate Dinky being ahead in something for her age instead of being 1-3 years behind (reading- yup my kiddo is ABOVE the level expected for a 7 year old! Go Dinks!)

I celebrate the achievements from the compliance but I will never, NEVER celebrate the act of complying. 

I also think school are too busy celebrating and getting ideas of how to push her further that they miss the signs of high anxiety and then a massive meltdown occurs and I get another physical handling notice (retraint notice) from school. Little- moderate meltdowns are normal for us, and usually don’t require physical restraint as it tends to be throwing stuff and stuff can be replaced. So for the amount of physical handling notices she has are far too many. I don’t assume she will never have a major meltdown at school, but they are pretty much weekly sometimes 2 a week and always following a period of compliance at school. I’ve noticed a big difference in how Dinks is at home, she is much more explosive lately, and while sometimes I have to restrain her, I hadn’t needed to do a full sit down and restrain her fully, type in a while like I did last weekend. 

I really think the cost of complying at school needs to be taken into account when they see it as a step up a ladder they have made. They really need to see it as being on a bungee cord and the harder and faster they get her to go at once the harder and faster she will fall back. 

   
I think the school needs to be more careful and take a slower approach. They are more likely to get more out of her if she doesn’t shut down for as long after each bout of compliance to learning. 

Learnign with PDA is a marathon, not a sprint

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4 thoughts on “I refuse to celebrate one thing about my autistic child

  1. The ability to cope is important. What seems to be going wrong here is that Dinky needs to be taught coping strategies – techniques that enhance and expand her ability to cope. It seems that school are just expecting her ability to cope to grow naturally as they push her and that is not going to work. This is the thing with autism: things that come naturally to others have to be taught to autistic children.

  2. This is such a great post! Havign grown up with undiagnosed ASD, I was mostly punished fo rnot meeting normal standards and praised too much fo rthing shtat I merely enjoyed (such as calendar calculation),w ith the added expectation that since I was a genius, I should be able ot behave. You know, I hate praise and this is possibly oen of my PDA traits. I do love tha tyou celebrate Dinky’s wellbeign, rather than her mere compliance with standards that she cannot actually meet.

  3. Yes!! My daughter’s school are generally very good with her, and although M has a lot of PDA traits she has not been diagnosed and isn’t as severe in her behaviour as some children, she needs very careful managing. I too celebrate the things I can see are progress, not the times she has managed to complete a task on time or sit in the dining hall as I know only too well the high price those sort of endeavors come with.
    Well done on celebrating what is truly important – Dinky is doing brilliantly.

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