Wednesday, March 26, 2014

Thank you, I'm doing pretty good...

I just realised how many times I've been asked in the last few weeks "How are you doing?" Those people include my mum, my doctor and friends.  What they are meaning is "How are you coping as the mum of a fairly newly diagnosed Aspie teen?".
completely unrelated photo but I like a photo in the post!
It's something I had decided I would never write about here because the last thing I want to do is upset my ASD son if he should stumble across this.  What made me stop and rethink was that my daughter is volunteering at Riding for the Disabled on Saturdays and a few weeks ago she had a training session.  They learned about the different disabilities the children have and how riding horses helps them.  One of the disabilities discussed was autism. The question was asked.  Has anyone had experience with this, so she raised her hand and found herself answering questions about having a brother with Asperger's Syndrome (or ASD as it is now known... Autism Spectrum Disorder).

She was asked if she, or her mum, would like to come to a future training session to talk about ASD.  She asked if I would do it.  At first I thought, I'm no expert... how could I give advice to anyone?  But on thinking, in the last year I've researched a lot online, read most of this book by Australian Tony Attwood (which I can recommend highly), worked my way through New Zealand's health system trying to get answers and as much help as we can, I've had some great advice from a couple of other ASD mums and I've learned to take one day at a time - actually one minute, one hour sometimes - such can be the fickle nature of things.

I've shed way too many tears, harboured too much anxiety, learned that I have to be strong, and that I will make it my mission to help him find the best life he can have.

I can advise the volunteers that those with ASD frequently need information up front and in small bite size pieces. Too much at once creates overload and that equals stress. Stress is to avoided! I can advise them they may not engage in much conversation and to think of asking questions requiring a one word or short answer.  I can advise them their minds may wander to their topic of interest and they may have difficulty focusing on the topic at hand. I can advise them not to judge them by their style/clothes.  They may not be dressed as expected.  They may like certain comfortable clothes and be completely unconcerned about the weather or fashion. I can advise them not to be offended if spoken to in an offensive way as that is usually triggered by stress and usually not meant. I can advise them that they may have noise and other sensitivities. And the list goes on.

It's overwhelming at times and bewildering. I'm certainly no expert but I have a year's experience behind me now. What people need to know is that people with ASD are usually very bright, intelligent individuals.  I've learned so much from my son. I love him to bits and wish the rest of the world could get to know the real young man behind the quiet facade outside of home.

If I can help tell the world about my experience with ASD, then I'm going to embrace the opportunity.

I repeat that I'm no expert in this area, and any opinion is entirely my own.

PS - I just read this to my hubby before posting, just to make sure I was doing the right thing...and I burst into tears, such is the emotion that goes with this life of mine. I also wanted to say that I'm careful how I record this in my PL pages.  After advice from other mums, I have eluded sometimes to difficult times, and written on the back of cards, so the story is recorded but not for all eyes looking through the albums.  I'd love to hear from others how you record your story.


2 comments:

  1. Donna, thanks for sharing a part of you with us. My best friend is on the autism spectrum (aspergers - although I believe that's not a "thing" anymore ?) and a lot of what you said rung true for me. What I can add is that although it was difficult to become her friend - and sometimes is to stay her friend when she does things other than what I'm used to - it is so incredibly worth it. There is a reason she's a best friend.

    I really love that you have been recording on the back of the cards. As you know I am going through a difficult time with my mom and I struggle between wanting to record but also not wanting to record bad things. Will definitely take some inspiration from you and write on the back. That way, if I want to revisit I can, and if I don't, I won't. It also maintains the intimacy with my thoughts that I don't often want to share with the "world".

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    1. Thanks Caylee. Your friend is lucky to have someone so understanding. I know it must be difficult for you at times. Social unawareness is a big ASD thing and they can say some terribly hurtful things without realising they are insulting. My heart bleeds for my son over this. Hugs to you re your mum. Hope we can inspire each other with handling the 'real' life stuff and stay positive at the same time. That's why I love scrapbooking - the friends I have made are priceless:)

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