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Back in October Elijah was diagnosed with Asperger Syndrome. I wanted to write about it then but it was the day before we flew out to visit my sister, so this post got put off. Then when we got back there were the November birthdays and then Christmas and there never seemed enough time to sit down and pick the right words. And the right words are important, I guess that’s why I haven’t written lately, because I wanted to make these words right and that means devoting time to them and time I didn’t have. The main thing I want to say is that I didn’t not write about this straight away because I’m distraught by the diagnosis, I’m not, Eli is our beautiful little guy and I would never want him to feel that he has to pretend to be someone he isn’t or feel that we aren’t happy with him the way he is. I wouldn’t change him for the world just sometimes I wish I could change the world for him. 

Asperger Syndrome is a  neurobiological disorder that is part of a group of conditions called autism spectrum disorders some people liken it to being a visitor from another planet not knowing how to live by the rules of Earth. Having Asperger’s means that Elijah has trouble understanding what other people are thinking and feeling. He is unable to pick up on the social and visual clues that we all use to function in the world. This means that hints don’t work, if he is chatting away to you about something he is interested in and you say "Well that was very interesting but now I’ve go to make the dinner" he’ll just follow you into the kitchen still talking totally unaware that you were trying to end the conversation.

He finds most social conventions hard to get his head around for example he will walk up to perfect strangers, adults, and start talking to them like he has known them all his life. I"m pretty sure if he ever bumped into the Queen he would immediately start explaining to her how to get Sonic the Hedgehog to run super fast so he can jump onto the next mountain. He also finds it hard to believe that not everyone else in the world wants to know a detailed description of how to play every game he has on his iPod, it interests him so of course they would want to know too. 

Elijah also has tics and sensory issues these tend to come and go and are worse when he is stressed, they were atrocious the year he went to school. Tics are repetitive sounds or actions that he can’t seem to control Eli’s include: Hand flapping, arm twirling, jumping on the spot, making a clicking noise and a high pitched short squeal.

Sensory issues are when sounds, tastes, touch, smells and visual stimuli aren’t able to be filtered properly and become overwhelming.  A lot of Elijah’s issues are with sound, he finds excessive noise unbearable. Walking into a supermarket with all the different noises combined is very hard for him it would be a little like walking into your house and turning the TV on high and the radio, the food possessor and the food mixer then  trying to record you own voice saying a poem. When you played it back the audio would be a mess you would not be able to distinguish the poem from all of the background noise, that’s what crowded places are like for Eli.

He also dislike complex flavours and for a while refused to eat any meals with sauces such as casseroles or mild curries. One stage a few years ago I was picking his veggies out of casseroles and rinsing them off. Now he will eat them and some of his favourite meals are all in one pot dishes but he still doesn’t like sauce from a bottle. Or he’ll get stuck on one flavour for two years now all he’s wanted for lunch is jam and bread with a slice of cheese on top, I know yuck but he eats it.

This is how the show Arthur portrays Asperger Syndrome, I love Arthur it’s a great show for helping young kids deal with and understand different topics and it does a good job with this one.

One thing it doesn’t mean, that a lot of people misunderstand, is that he can’t sympathise or show affection. This is just not true. He has trouble catching onto what others are feeling but once he does he can understand their emotions albeit a self focused approach. During the recent flood crisis in Australia he would often come out with sentences like "Oh if they didn’t get up onto their roof they would have been drowned, they were probably scared of not getting onto the roof, I wouldn’t be scared because I can do gymnastics and I would have just jumped and turned like this to get onto the roof." Then acting out complex roof jumping life saving manoeuvres all the time smiling broadly, happy with his success. He did feel for them, he understood their distress but he was also happy he knew he was safe and if we are honest with ourselves so were we all.

As far as affection goes, well just look. He is full of smiles and hugs. 

This video was created to explain Asperger Syndrome by people who are living with it. It’s very well done Aspie’s as they sometimes call themselves can be very creative.

Kids with Asperger’s are prone to meltdowns and Eli is no different. When things are to much they are unable to express their emotions verbally or even ask for help. Instead they can instantaneously burst into tears, hide under a table, pace back and forth or sit on the floor rocking and seem oblivious to questioning looks from other children.

Since he has turned seven these episodes are less common and less extreme. Now he will often disappear into his own world for a time when he is stressed instead of flipping out. That’s where he is in the above photo, miles away inside his mind his hand is the only thing left in this place repetitively tossing a shell up and down like it’s his link back into the physical realm. 

Or he just wanders off. He’s done this all his life I am forever losing him I think i must be on all the local supermarkets bad mothers lists.

So anyway that is our news, both new and not really new as the official part is new but I have known there was something up for so long (wow that’s a lot of news) sorry Dad jokes must be contagious. Now we just need to create a file for the reams of paperwork we are collecting and begin to find medical professionals to help us pick a path top walk down that will hopefully lead to a calmer more equipped boy who can live happily on this planet.

He are some more links if you are interested in learning more about Asperger Syndrome the first one is quite good for explaining it to other children.

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10 Responses to My boy from a galaxy far away

  1. Jen says:

    A wonderful incite for those unfamiliar with aspergers syndrome(like me).
    You are amazing parents of 4 gorgeous children. Keep up the great work.

  2. Tabitha says:

    Really great explanation :) I will direct ppl trying to understand it to your post here. A few ppl in my family are “Aspies”, and in the past few years I’ve watched a friend of mine try to find out exactly what was causing her boy to be different, and then trying desperately to get him the services etc that he needs. She’s homeschooling him now too.

    Love the “news” joke lol!! You and your family are blessed to have each other :)

  3. Lusi says:

    You shared that so beautifully. Having Liji diagnosed was the best thing for our whole family. Glad you’ve been doing well; Ive missed your blogging but totally get what it’s like when life happens – so much more important!
    Love to you guys,
    Lus x

  4. Kathy Coard says:

    Great article. Thanks for the video links, I can use them to show Alice so she can understand Charlie a bit better.
    Charlie has also reached the stage where he doesn’t flip out so much, although we still get tears over a missing lego piece!

  5. Sarah Slaven says:

    Thanks guys it’s so nice to know I have so many friends two steps ahead of me on the same path makes it all seem less lonely.
    Thanks Tabitha good to know my jokes aren’t too corny.
    And Lusi just been catching up on your posts so good to read that Liji is doing so well praise God for the strength and wisdom he provides I can’t imagine this life without his guidance, oh and big congrats on number 5.
    Kathy I found Lani had a lot of questions about her brother and the videos and the first link at the bottom really helped her understand him better.

  6. Lusi says:

    Thanks Sarah for the congrats. We are all very excited :)
    I totally know what you mean mate; God’s guidance and leading has gotten us through every step of the way so far. I was just thinking about your post over brekky and was thinking how full on the road was initially and now nearly 3 years down the track since diagnosis, so much has changed! It’s not all perfect of course but so much has changed in us all for the better because of this journey.
    Anyway, I’m here if you want to chat or debrief :)
    Thought I’d just leave you with a funny story since you mentioned about Lani having questions about what was happening.
    A couple of days after Liji was diagnosed, we were of course still in what-is-this-all-about-mode and were getting lots of phone calls from friends asking how the diagnosis went and to tell us they were praying for us. We hadn’t sat the kids down yet and talked about it; we were just trying to make sense of it ourselves! Well, Stass who was all of 6 leaned across the dinner table after hearing me answer the phone and say, “Yeah thanks so much. Well, it’s Autism…” and she says to her brother, “Do you know what Autism is Liji?” Liji pauses for a split second and then retorts with, “Ah yeah, dur…it’s when the leaves fall off the trees!”

    No one had the heart to tell him that would be autumn not autism. So sweet and perfectly summed up the journey for us at that time…sweet boy!

    I know you will have many wonderful times along this journey that will far outweigh the challenging ones.

    Love to you all,
    Lus x

  7. Madeline says:

    He is incredibly lucky to have a mom like you. You’ve learned so much about who he is, and you are willing to figure out how to help him be his best. Eli sounds like a beautiful soul. :)

  8. Katie says:

    Thankyou for this extemely insightful post. I would love to post a link to it on my facebook page, how would you feel about that? I think that every person should read a post like this, to be able to understand the world of Asperger Syndrome. Then perhaps these kids will be better loved and understood instead of alienated.

  9. Sarah says:

    Hi Katie
    Thank you for your lovely comment linking to this post is fine by me. I completely agree with you the more knowledge we have about anything can only help with understanding and acceptance.

  10. Jane says:

    Excellent post Sarah. So helpful to give a personal view which opens up the world of Aspergers to others, by sharing it both from Eli’s perpective and your own as a mother. I hope we can all learn and help our Apserger friends to ‘belong’ in this world through a better understanding.

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