Saturday, 28 April 2012
My Dad recently sent me an Audio Digest CD to listen to with a 3 page article titled:
Autism: A developmental Pediatric Perspective
From Pediatrics Updated 2009, presented by Phoenix Children’s Hospital Ruan D. Melmed, MD Medical Director, Southwest Autism Research and Resources Centre, Phoenix, AZ and Director, Melmed centre, Scottsdale, AZ
On the third page it is talking about Educational Programs and says:
Parental and sibling support:calm comfortable mother most important determinant of outcome; depressed mother has most significant negative effect on outcome, considering almost all other risk factors; identifying stress, anxiety, and depression in mothers essential; fathers have varying responses (may have fewer outlets for feelings about difficulties with child); impact on siblings also significant.
No pressure there Mum, none at all.
“calm comfortable mother most important determinant of outcome”
Which really got me thinking.
A) I’d swap out the word mother and use primary carer because whilst it is still most often the mother there are many other people who now fill the role of primary carer. I know of Grandparents, Dads and Aunts who all play the role of primary carer and I think they need to be acknowledged.
B) It is not just children with special needs who benefit from having a calm comfortable primary carer, I think all children need that. However special needs children due to the extra demands on their primary carer make it very challenging to remain calm and comfortable.
But at the core there is a really vital message.
We invest so much time an energy in caring for our children. Early intervention is pushed so very hard, speech therapy, occupational therapy, things to follow up at home, preservative and additive free diets. There is this huge focus on the well being of the child whilst often the well being of their primary carers is neglected.
Respite is overbooked and hard to access, never ending waitlists on which your name is written in the vain hope that one day you might get picked. Sometimes the hardest most stressful parts of being a Carer is the day to day routines. Knowing that you will spend all day doing something and most of it will have to be done again tomorrow and the day after and the day after. Scheduling time for you, just to stop, time to just be and not have anyone, no matter how well intentioned, demand another nano second of your attention.
The lack of sleep, the sheer exhaustion of getting up each day having not properly rested. Those days when each and every interaction with a child is a battle, right from the very first ‘would you like toast or cereal for breakfast’ and they break down into hysterics because it is a choice and that is too hard. So you put out the cereal and they get angry because it is not what they wanted. You use your social story words and your boardmaker pictures, you talk about using words when you are angry, you talk about choices. And the entire day is marked by these interactions, it doesn’t stop, it changes as they grow older, but it is still there, ever present.
And maybe you are having a really bad day and it just all gets too much:
your 7 year old threatened to kill herself (again) because she lost a toy (again), your 5 year old can’t stop kicking things and is chewing everything she can get her hands on – buttons, marbles, safety pins – it all goes in her mouth despite the chewy tube hanging around her neck.
or another day where your 7 year old is you think happily watching a DVD and the 5 year old is in full on meltdown because it is not the show she wanted to watch, what you don’t realise whilst you are calming the 5 year old and trying to avoid a broken nose from her violent stimming is that your 7 year old is sitting there biting her arms, why! Why?.
You call a friend or a family member just to vent, let off some steam so you can go back to calm comfortable parenting and they say ‘oh that is typical for a child their age’ or ‘your over reacting’. Which just make sit all worse and puts the pressure back on you. Silly over protective, over reacting mother, she should be more calm and comfortable.
Or you go see your doctor, ask for help. Get told you simply have to tell your child ‘no’ and draw a line. The doctor doesn’t get it, makes you feel like a bad parent, not strong willed enough, not disciplined enough. Finally though you make the doctor understand that at the very least you can not do this parenting special needs kids thing on your own and you get that referral.
Then you have to get in to see the psychologist, you ring around different psychologists, all are busy, no-one returns calls. You try again, this time you leave messages referring to 7 year old, self harm, you hope someone might call you back. One person does thank god, you stop caring that they don’t accept partial funding, that it is $200 a visit, they called back, the only one that cared enough to do so. BUT they are booked out for 6 months, you fight for an earlier appointment, agree to take any time slot, get put on a wait list, you push your concern over childs behaviour, inability to cope or even understand why. Finally there is an appointment in a month. None of the others ever return your call, do they not care? Are they too busy helping others find that calm and comfortable place?
And at the end of it all here I am left wondering what went wrong, how can it be that a calm comfortable primary carer is so vital to our childrens well being, yet support for it is so neglected? Why is it so hard to get help at all, everything is a battle, from trying to access support services, to trying to get funding for aides and respite, to trying to just be heard. It makes me sad that even accessing the help a Carer needs is made into a complicated and challenging process.
And to end on a happy note – I’m blessed to have some close friends who get it, who understand and whilst I can not always call them I can email. But I worry because there just is not the support for Carers that there should be.
And yes we are seeing the psychologist very soon, intermediary measures are being taken and thus far they are helping.