Managing Autism - A Personal View

Christmas and the holiday season is fast approaching, and with it comes parties, get togethers, and then even more parties!  Although Jack loves the idea of being very social, when it comes to being in an environment with lots of other people, and noise and excitement, he just doesn’t cope well (in fact, one on one social time is probably the best for him - assuming he’s in the right frame of mind!).  So with Christmas ‘on the horizon’, we are busy preparing ourselves with some strategies and tactics to get us through the crazy social time.

This year we have made the decision to re-structure our holiday social gatherings.  In the past (before the diagnosis) we struggled through parties and social occasions, fighting an uphill battle.  Only now do we realise that in the past we were simply setting Jack up for failure.  We were pushing him beyond his boundaries, and expecting too much of him (in terms of coping with the social frenzy).  This year will be a little more low key, with better planning and more structure to our outings and visits.  Fingers crossed all goes well!

Casdok at Mother of Shrek forwarded us this link to her favourite video.

We’ve had some trouble with the code so if the video doesn’t appear on your screen head over here to view it, but please come back and leave us a comment to tell us what you think.  It’s very powerful in it’s message!

Thanks Casdok!

And please leave us a link to anything you would like to contribute!

“We’re living with autism, and we LOVE autism!”

We’re starting to put together some photos of us all - photos that depict what we love most about Autism.

Most of all it’s smiles!!!

(You can see more down our side bar.)

We’ve been spending alot of time over many months wandering around blogs and forums, and it’s wonderful to see the positive exposure that autism is receiving.

Of course, there is alot of negative stuff (you’ll always find that), but overall we are delighted to find that there are so many people like us who are just trying to share their story and help the world see that autism isn’t a scary thing - in fact to us it is just normal.

We live with autism, and we love with autism - how could it be any other way!?!

PS - Don’t forget to check out our series of videos  - and if you have some favourites of your own you would like to share please just leave us the link!

Jason McElwain autistic athlete

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If…….

(This was the last song recorded at Purple Pro Audio Studio in Leeds by Leeds Asperger Adults in 2006. The aim is to raise awareness of Asperger Syndrome in Leeds.)

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We found this great video the other day, and had to share it with you all.  We think it says so much about our beautiful kids - all they want and all they need!  Enjoy!

PS - We’d like to run a series of people’s favourite video’s raising awareness of autism.  If you have one or know of one (or more!!!), please copy the link into the comments for us (with a little explanation) and we will share it on our blog.

“I am going completely out of my mind!.. Does your child sleep?”  These were often the words out of my mouth when Jack was younger.  Even as a baby, for Jack, sleep was hard to come by.  And if we were able to settle him into some sort of sleep routine it would only take some very small change in routine or environment to completely throw him off sleep again…

My Mum nicknamed him “Half hour Jack”.  This was about the extent of his sleep time before his eyes would pop open, and he’d be ready to go again!

I used to wonder what I was doing wrong.  Other mothers that I spoke to would agree with the fact that babies are often very difficult to settle, but never to the extent that I would experience.

As Jack grew older things became a little easier, but to this day we still have many nightime wake-ups and difficulties falling asleep (especially if out of routine!!!)

I came across a really interesting news article the other day about a study on the sleep problems of children with Asperger Syndrome.  Many of the results rang true for us (the falling asleep ’sweating’ for instance), and the tips to help Aspergers children with sleep were helpful.  Check it out and let us know what you think!

Elissa

children with asperger syndrome more likely to have sleep problems

Medical News Today (press release) - UK
the first known attempt to evaluate the sleep patterns of children with asperger syndrome (as), taking into account sleep architecture and the cyclic …

What a wonderful weekend we had away - we feel refreshed, and ready to go again (having been feeling quite tired and run down after a busy couple of weeks).

The kids also had a fabulous time with their grandparents, although they were incredibly excited to have Mum and Dad home again!!!

Having just taken a quick wander around ‘blog world’, I’ve discovered that whilst we were away, Maddy from Whitterer on Autism tagged me for the 18 items to share about myself - talk about throw me back into hard work!!! Oh well, I know Maddy, it’s about time I shared some details!

So, here you have it:

1. What were you afraid of as a child? Being left alone, and the movie “The Wizard of Oz” (long story!!!)
2. When have you been most courageous?  When I walked across burning hot coals in a ‘firewalk’ (another long story!!!)
3. What sound most disturbs you?  Screeching, out of control cars - I hate the thought of the follow on…
4. What is the greatest amount of physical pain you’ve been in?  Child birth - thank God I have had relatively short labours!
5. What’s your biggest fear for your children? (or children in general if you don’t have your own)  My one hope and dream for my children is that they live life happy and successfully (in whatever way they want to define success themselves…), so I guess my fear would be that this didn’t happen.
6. What is the hardest physical challenge you’ve achieved?  Hmmm….. have to think about this one…..
7. Which do you prefer: Mountains or oceans/big water?  Mountains, definitely… although I do love being on the beach - just not in the middle of the ocean!
8. What is the one thing you do for yourself that helps you keep everything together?  Breathe deeply and walk, walk, walk.
9. Ever had a close relative or friend with cancer?  I have had relatives with cancer - it certainly gives you a wake up call to what is important in life!
10. What are the things your friends count on you for?  Support, being a loyal shoulder to lean on if they need one.  Unconditional friendship.
11. What is the best part of being in a committed relationship?  Having my best friend with me all the time - always!!!
12. What is the hardest part of being in a committed relationship?  Being apart!
13. Summer or Winter? Why?  Actually, it’s Autumn and Spring - it gets too hot for me in Summer here in Australia, and I’m not a fan of the cold either (although our winters are quite mild compared to other places).
14. Have you ever been in a school-yard fight? Why and what happened?  Can’t say that I have!!!
15. Why blog?  To share my experiences with others, help others, and have a positive impact on the world (sharing what autism has brought to my life… both challenging and wonderful!!!) - don’t we all want the world to be a better place?!?
16. Did you learn about sex, and/or sex safety from your parents?  Yes, and from classes at school (although as a school teacher, I’m learning things these days that weren’t taught when I was young - gosh, now I sound really old)!
17. How do you plan to talk to your kids about sex and/or sex safety?  Openly and honestly - bringing love and compassion in as a necessary part of it all.
18. What are you most thankful for this year?  My beautiful husband and children, and the opportunities I’ve had to grow as a person.

Well, that’s me in 18 questions!

And, I’ve decided to tag Bonnie at Coffee Faith Autism Explored to share her answers to the 18 questions.

Thanks to Casdok we are also getting ourselves into gear in regards to getting some photos up on the blog - hopefully in the next couple of days so that we can share a little more of ‘us’.

Lovely to be back, and looking forward to catching up on ‘blogging’!!!

After having a night away only last week, we are again set to have a break - this time for a whole weekend… and without the kids.

We are travelling interstate for a couple of nights, and leaving the kids with their grandparents (who have so generously offered to have them for a ‘holiday’).  Unfortunately not all rest and relaxation, a conference is the reason for the trip, but it will be wonderful to spend some time together just as a couple.

Recently we have been really weighed down with a whole lot of ’stuff’, having appointments coming out our ears, and trying to make plans for Jack next year (with school).  It has almost got to the point where we can’t see past any of it, so this weekend will do wonders for lifting the spirits and giving us a fresh outlook.

So even though it is still mid-week in many parts of the world, have a lovely weekend everyone, and remember - time for yourself is one of the most important gifts you can give yourself!

We’ll be back in 4 days!!!

We have found one of the most challenging things to deal with in relation to Jack’s autism spectrum disorder, has been trying to make our way through what sometimes seems a never ending list of specialists to see, therapies to organise, and strategies to implement.

After we had Jack’s official diagnosis confirmed, we emotionally ‘fell in a heap’ (so to speak).  The months of assessment had really taken their toll and the relief at finally having an answer was quite overwhelming.  Probably like many parents who have travelled the long and difficult road to diagnosis, we found ourselves thinking that once we’d got that far, the hard bit was done.  But of course, it was only really beginning.

Some days we look at the ‘list of to do’s’ and it’s a case of not even knowing where to begin.  Appointments and phone calls are usually challenging in themselves - trying to work around a routine so that life doesn’t get too disrupted, and trying to choose times where behaviour will be less of an issue so that you can have proper conversations with professionals (rather than fighting your way through a conversation because your child needs your attention or is yelling in the background).  To then try and incorporate newly learned strategies (that are designed to assist your child) into everyday life adds another dimension to the ‘list’.

We have conceeded that one thing is for sure - being organised is absolutely vital.  Although it also pays to be flexible and willing to ‘go with the flow’ if needed.

We have found that if we think too far ahead it all becomes too hard, so now we take one day at a time, do what we need to do (as best we can), and trust that eventually we will get there.

Today’s thought for the day: 

“When I loved myself enough

I quit wishing my life looked some other way and began to see that as it is, my life serves my evolution.”

Kim McMillen

May we find the beauty and joy in what life is for us!

Elissa & Steve.