Monday, April 2, 2012

Take a Parachute and Jump


So it is World Autism Awareness Day and here I am without a blog post.

I am feeling very autism aware as Grace decided last night that she needed a Letterland phonics Video which has been out of production for about 15 years. So I had a small girl stomping her feet saying "I want AAY, BEE, CEE, PURPLE, VIDEO" and then putting on her hat and coat and demanding to sit in the car until 2am.
Today, when we were all a bit calmer, I helped her to make this sentence using google images:


so we were able to work out exactly what video she wants and where it is - School! 

which doesn't reopen for another 2 weeks. Ebay it is then.


Autism Awareness for me is about making everybody else in the world aware that we exist, we are here to stay and you better get used to us. It's a chance for family, friends and acquaintances to catch up and realise that their sister/brother/son/daughter needs them to be aware of autism and perhaps be a bit more supportive. It is about being accepting and accommodating to the autistic people in your life.

Is there anything you can do to make life a little bit easier for a family with autism?
*Plan the next family celebration in a venue that would allow the parents to relax a bit knowing that their autistic child is safe and comfortable.
* Find out the last time they had a night off and offer to babysit.
*Ask before buying presents if there is any important equipment they really need and are perhaps saving up for. (iTunes gift cards are always welcome in this house!)
*Make your own home a bit more welcoming, put away breakables, set aside a quiet space with a video and/or wifi access, buy the foods they like, hide the foods they cannot have and keep the front door latched so Mum and Dad can catch a break without worrying... Well?

For me, it is also a day to spread a message of being "aware" of the signs of autism and taking the next step to diagnosis.
Autism is a developmental disorder and can manifest in a huge variety of delays so it can be difficult for professionals to spot, until a key milestone is missed. Parents however usually have a niggling suspicion, somewhere in the corner of their mind that things are not quite right. They might keep trying to talk themselves out of it, like I did. For example:

"I was a late talker, I didn't say a word until I was 2, so he will be fine, he is just like me"
Well, you actually had great imitation skills and were babbling away at 18 months. Your Mum was just too busy with your older sister to notice or write down any of your wordish sounding sounds. Your child is not saying anything. Get Help)

"Isn't he lovely the way he leads me by the hand everywhere, he is such an affectionate child"
He is leading you to get things because he is not learning to imitate sounds to make requests and leading you is quicker and easier. Get Help.

He doesn't look up or answer when you call his name, but that's because we always call him Boo!

I really said this to a childcare worker who was trying to hint to us to get a referral.  It took a while to sink in but Bill finally managed to convince me to go see the GP, then the Public Health Nurse where we got a referral to a paediatrician and began our trip down the road to today.

It is scary, you don't want to go down that road, it feels like if you start the process that you are wishing a disability upon your child, that you aren't loving them enough to be able to fix them.

But its no help to put it off and ignore it. If it looks like a duck, it sounds like a duck and it walks like a duck - then you are doing no harm making an appointment to see someone who can confirm what you fear and get you on the right track towards getting help. The Developmental Delays are there to be addressed, whether you take the steps to getting the right help or not. Getting a diagnosis is the first step to overcoming those delays with the right help.

And yep there are times you will feel like you are falling, that the future will be hopelessly daunting, that you will not be able to cope. - All I can say is don't look too far ahead, and whatever you do don't look down. Just take the parachute and jump, there are thousands of us here to make it safer for you and when you need it, we won't let you down.


For more information in Ireland www.autismireland.ie
For more information and support everywhere else, post your links below!

10 comments:

Hammie aka lisadom said...

testing

Sharon said...

Love it! Some great tips there Lisa.

Ryan has decided he *needs* a "head projector" like they have in school. He found what he needed on ebay and showed me telling me "it's free!"
It was a £1000 home-cinema projector with free postage. It took a while to explain that's it's not actually free and he's still not given up hope that he can make this happen. He suggested we sell the tv!

jazzygal said...

Excellent...and I LOVE that song :-)

xx JAzzy

Devina Divecha (Autism and Us) said...

Great post!

Someone I know - her child has been given an unofficial diagnosis of ASD in her home country. She has accepted the diagnosis, but keeps saying she doesn't think he has "real autism", which I don't understand. I mean, what on earth is fake autism?! She keeps stressing with the right attention, he'll "grow out of it". I hope she comes to her senses soon...sooner the better for her, her family and her child.

Hammie aka lisadom said...

Sharon: I like his style. He is problem solving and self actualising.
Val: so do Liam and I. Does give me ear-worms though.
Devina: oh dear. Sounds like a curebie in the making. I hope she follows the scientific route to intervention, and acceptance comes soon xx

Looking for Blue Sky said...
This comment has been removed by the author.
Looking for Blue Sky said...

Love the practical ideas of how to help families living with autism x

Make Do Style said...

When I read this I realised friends of ours have a little boy who is probably autistic. He was late to everything and still hasn't hit many developmental milestone especially speech.
I can't say anything! Help!

Hammie aka lisadom said...

Hi Kate: can I make a suggestion. As you can read above, I wouldn't listen to people telling me my son had developmental delays until I was ready to hear it. But you could direct this parent to an Autism Charity in the UK using a ruse: to get an iPad -. http://www.heartsandmindsphones.co.uk/ have organized a recycle campaign where you can register to collect 165 old cell phones to get a free ipad2. The charity is supported by Keith Duffy in partnership with Autism Ireland and Manchester United players like Paul Scholes, and Melanie Sykes donated her winnings from The Million Pound Drop to it. If you are close enough to this parent, just say you read about it "on a friends blog"

the ruse being that they might start doing some research once they get there ?

Download Parachute Apk said...

awesome I put-off buying this for months, despite positive reviews.