Saturday, February 4, 2012

Summer of Star Wars



While we love the long summer holidays, sometimes Nathan and I struggle with the intensity of having both boys around all day every day, with their high activity levels - running, shouting, jumping, stomping through the house, opening and closing doors constantly. This is especially the case when they squabble over toys and need us to help them resolve the conflicts.


These summer holidays have been refreshingly calm. The boys have played together so well, majority of the time. Of course there are still little arguments over toys etc, but that is normal with brotherly interactions.


Eli has had a long standing Star Wars obsession, and now has quite a sizeable collection of Star Wars figurines complete with little light sabers. His favourite activity is re-playing scenes from Star Wars movies or the Clone Wars series with his figurines. Ethan also has a few of his own and we often hear the boys playing Star Wars together. Ethan particularly likes his R2-D2 and R4-P17 droids. Eli's Star Wars obsession has definitely flowed over to Ethan. I'm always finding Ethan's drawings of "Datrh Vader" and "Yoba" (as he spells it!) scattered around the house or stuck on the fridge. Or being accosted by the boys dressed in Star Wars gear with their light sabers, ready to attack!


It is great that they are now able to share interests and are enjoying playing together. Ethan's speech and understanding has improved greatly in the last year, and he can participate in all of Eli's discussions and games. I love hearing them giggling and chatting together as they share activities and play times...makes those challenging moments easy to forget! I am so grateful that they have each other as friends and playmates.

Sunday, November 27, 2011

Changing Perceptions: The power of autism link

My dad sent me this link, it is a refreshing and encouraging article about the abilities and strengths of people with autism.

http://www.nature.com/nature/journal/v479/n7371/full/479033a.html

Tuesday, November 15, 2011

Tools of the Trade

These tools of the trade – for teaching/ helping a child with autism – are the ones I keep close at hand, the tools that I use everyday to get the job done most effectively and efficiently!

Time timer
I was so excited to discover this visual timer a few years ago, on Sue Larkey’s website. It is a great concept, with the red indicator to give the child a visual as the time elapses. The timer is silent apart from a little double beep when the time has completed. We use the Time Timer every day. It is useful for indicating time on the computer, preparing the boys for changes in activities, giving them an expectation on how long I want them to keep on a task eg. sitting at the dinner table, and for indicating how much time is left before a change is coming up eg. 2 minutes left in the bath. The boys are so accustomed to the timer that they often request it. For example if I say, “time to get out of the bath now” they say “put the timer on mum?” so I’ll set it for 2 minutes, then when it beeps they are usually happy to get out of the bath.

First, then
This visual aid is almost miraculous in its’ effectiveness. It often amazes me how well this visual aid works. I can tell Ethan 5 times “toilet then dinner time” and he may refuse or not acknowledge what I have said. Then I will put the picture cards on and show it to him and he will do what I have asked! It reminds me how much more powerful visual information is compared to verbal information for Ethan. This visual aid has proven useful with activities like swimming. Ethan has to wear ear plugs because he has grommets bilaterally, but he really dislikes wearing ear plugs or a swimming cap on his head. He does love being in the water, so using the visual of first ear plugs in, then ear band on, then SWIM works. He understands what things need to happen before he can go in the water, when he is given the visuals.

Obsessions are your friend!
Work with the special interests rather than trying to stifle them. Refer to my post Obsessions: Love them or Loathe them - learn to use them!

My “be prepared bag”
Whenever we go to church, a doctor’s appointment, to the hospital, supermarket shopping, etc I always take a bag of essentials with me, even if I won’t end up needing it all. I always anticipate that I will have to wait and will have to keep the boys entertained. My activity bag contains:
· a mini magnetic drawing board
· container of snacks (rice crackers/ pretzels/ tiny teddies/ grapes etc)
· a couple of trains
· bottles of water
· colouring/ activity books
· textas
· Ethan’s electronic spell-checker (one of his most beloved “toys”)
· Eli’s Star Wars reference book
· Fidget toys (koosh balls, stretchy animals, mini hand massager)

Sunday, October 30, 2011

Obsessions: Love them or Loathe them…learn to use them!

Obsessive interests are part and parcel of autism spectrum disorders. Ethan’s ability to fixate on his interests has always amazed me, even before I knew he was autistic. Ethan’s first obsession, which I only realise in hindsight, was the Teletubbies. When he was about 9 months old, his interest was piqued one day as I was flicking through the TV channels and he caught a glimpse of the Teletubbies and started to giggle. I loved hearing that beautiful bubbling baby giggle so we kept watching. A few weeks later he was crying in his carseat when we were driving somewhere, and I said “eh-oh!” like the Teletubbies, which resulted in those lovely giggles again. When Ethan was around 18 months old, he would sometimes wake up in the middle of the night crying for no apparent reason; even after Panadol and cuddles he wouldn’t settle. So I took to playing a Teletubbies dvd I had bought, and he calmed down immediately and would eventually go to sleep. One night he was having a huge tantrum and I couldn’t figure out what was wrong, eventually I put on the Teletubbies and he was so happy. I guess that was one of the first inklings of obsessive interests.

When he was a toddler, he would sit and do puzzles for hours, so content, and his skills were far beyond his age. Then he had a colouring obsession – I would buy colouring books from Chickenfeed and he would sit and colour-in until every page was covered in colour…. sometimes two hours later. He had some innate focused drive to finish every page.

His next major obsession was the Wiggles and his focus was incredibly intense. We would be walking through a mall and he would glimpse the tiniest Wiggles logo inside a shop and pull toward the shop and jump with excitement while studying the logo. By this time (around 3 years old) I knew he probably had autism, and I thought we should use the obsession as a teaching tool: we sang “Hot Potato” every night to get him to eat his dinner; we spent hours looking at Wiggles picture books with him, trying to encourage some speech; we played Wiggles DVDs to encourage some imitation of their dances and body postures; he learned colours because he was attracted to the Wiggles’ coloured skivvies and began labelling their shirt colours.

He has had many other fixations, but they change every 3 or 4 months. It is fortunate now that Ethan is in prep, that his strongest interest is letters and numbers. He spends hours writing sentences, checking on how to spell words, writing numbers, typing sentences on the laptop, reading books, spelling words on the fridge with magnetic letters. He literally spends at least one to two hours each day writing on his mega-sketcher. Sometimes he looks up a letter in his children’s dictionary and copies out all the words that start with that letter. He is spelling quite well, given his amazing photographic memory and interest in words and letters. This is an obsession that is educationally very beneficial! And he loves to share this interest with others, asking them what their name is, then writing it down and showing it to them proudly.

Transitions (changes in activities, or moving to a different place or task), which are difficult for many children with autism, are made so much easier using the special interest. For example, getting Ethan out of the car if we have gone shopping – often this takes 10 minutes or more and Ethan cries and protests or lies on the car floor refusing to get out. If I am savvy, I will plan ahead before we even leave to go to the shops and using a visual time table, will tell him “first shop, then car, then when you come in the house, you can write words/ type on the computer”.

Some professionals will advise parents to discourage obsessive interests in their children with autism, because of the assumption that the singular interest will cut them off from developing relationships and communication skills. But in my experience if you try to stamp out an obsession, another quickly forms. I believe that obsessive interests are an integral part of autism, and that level of intense focus and interest in a specific area is possible due to the neurological differences in brain structure of a person with autism. Obsessions can be a springboard to learning and developing opportunities for social interactions and communication.

My perspective is - use the obsessions to teach and engage a child with autism. Obsessions are highly motivating, most kids will complete less-preferred tasks (eg. going to the toilet) if they are rewarded with something related to their interest immediately afterwards. Creativity in tailoring activities to a child’s area of interest will pay off.

Sunday, August 14, 2011

A delicious way to teach emotions

Ethan’s favourite cookies are the gingerbread faces I make. He is very interested in emotions and facial expressions of late. Not usually an area of interest for a child with autism! – so I am harnessing that interest as much as I can! We have puzzles that focus on facial expressions, we talk about facial expressions and gestures and what the person might be feeling, we have dvds that show emotional expressions. We play games where we pretend to be happy, sad, surprised, scared, angry, tired etc which Ethan loves – both guessing the emotion and playing out the emotion himself.
Ethan has the tendency to get an idea or concept in his brain and then forever more that particular idea/ representation is set in stone – no flexibility tolerated! For example in Ethan’s mind, if someone has their arms crossed then they are angry. I am not sure where that association initially came from, maybe once when I was pretending to be angry (or was angry for real!!), I crossed my arms and did an angry face. Now if anyone ever has their arms crossed to Ethan they are “angwy”. Even if they are smiling and their face indicates happiness. He will insist they are angry even if I point out that their mouth is smiling, their eyebrows are not furrowed, they look happy etc. So we have been working on the different expressions and trying to change any of these fixations he has about how emotion is expressed physically.
So, one of my “tools” are these cookies. A delicious way to continue reinforcing the concept of emotions and hopefully creating flexibility in his mind about how emotion is expressed!

Wednesday, August 10, 2011

The Power of a Few Words

In the past few months I have been feeling a lot more positive about the reality of the boys' autism spectrum disorders. Maybe I am reaching the acceptance phase of grief/ diagnosis. Anyway, I feel more hopeful about their futures whereas a year or two ago I was very worried, especially about Ethan.

But a brief interaction at the Ear Nose and Throat Specialist's office today really made an impact on me.

We had to get Eli's ears and tonsils checked, and I had both boys with me today. We had been waiting for 40 minutes, so I was feeling stressed and edgy... Eli was leaping off chairs, climbing under chairs, repeatedly approaching the nurse saying "is it our turn yet?". Ethan was sitting on a chair pretending to be Ben the talking dog (iPhone app), flicking his magazine, throwing it on the floor and saying "hello hello" over and over, and generally acting a bit eccentric.

When we were finally ushered in, I tried hard to multi-task: attending to the doctor's questions and providing background information while attempting to keep a squirmy Ethan away from touching the doctor's computer and expensive equipment. At one point the doctor said "So, you have two children with autism? How did that happen?!" I was taken aback, it seemed a strange comment for a doctor to make and I paused while trying to figure out how to respond. I just said "I don't know..." I can't figure out what he was getting at, but for some reason those few words impacted on me, and I felt really flat leaving the office. Fortunately Eli does not need grommets inserted or a tonsillectomy, so that is a good outcome. But my flat mood is making me focus on the negatives, or the challenges of raising my boys with their different needs. I hate feeling like this, usually I am able to dwell more on the positives of autism.

I feel a bit annoyed with myself that a passing comment can have such an impact on my emotions. I must still be too over-sensitive to other people's perceptions of my children and my life.

Thursday, November 11, 2010

Don't Mourn For Us

I have recently stumbled upon this amazing piece of insight into the perspective of a person with autism. Jim Sinclair, the man who wrote this essay, is an adult with autism and did not speak until he was 12 years of age. In this essay, he speaks against the sadness and grief parents experience when their child is diagnosed with autism. He re-defines that grief experience as a mourning for loss of expectations of an imagined relationship - which he says has nothing to do with autism or with the child. He says "It isn't about autism, it's about shattered expectations".

The thoughts expressed in this essay have caused me to try to focus on Ethan's strengths more than I do, and accept him for the wonderful, delightful boy he is, instead of seeing him through my sometimes negatively-tinted autism lens. This has also challenged me to re-frame my concept of autism in terms of the positive aspects it brings to my child - autism is not necessarily negative.

Another key passage in this essay that resonated with me:
"You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you."

I have gained such insight and a different perspective on autism through pondering what Jim says in this essay; hopefully others do too.

Don't Mourn For Us

Sunday, October 17, 2010

You got a tag?

"You got a tag?" is a question we are bombarded with many, many times a day. Ethan's newest obsession is name tags - it emerged about two weeks ago. He is absolutely mesmerised with them and tags seem to dominate his thoughts for most of every day. As a "neurotypical" being, I find it hard to imagine how he could think about name tags all day - it really doesn't seem that fascinating to me!
Tonight we were sitting around the table eating dinner and out of the blue Ethan comments to Nathan "your tag is a rectangle". He was obviously thinking back to earlier in the day when Nathan was leading our church service. Nathan was standing up the front at the pulpit and I came in the back door with the boys. From the back of the church (15 - 20 metres away) Ethan immediately spotted that Nathan was wearing a name tag, commenting in a loud voice "daddy's got a tag!!". The tag was a rectangle shape, with "Nathan" printed on it. After Sunday School, Ethan could barely wait to race up to Nathan and scrutinise his name tag from close range. After he had a good perusal, he did his excited autism dance around daddy. Ethan then must have been thinking about daddy's tag for the rest of the day.
I have made Ethan his very own laminated name tag, with his photo and name on it. He wears it attached to a lanyard around his neck and is very hesitant to take it off around the house. He loves to wear it out and about too. I won't allow him to take it to kindergarten because I think he would be too distracted and over-focused on it all day.
Ethan insisted on wearing his tag to the supermarket the other day, and his main aim during the entire shopping trip was to ask every person we passed "you got a tag?". He then proceeded to check their person for a name tag- if they didn't have a tag he would say "oh, you don't got a tag." But if they were wearing a tag (ie. all the Woolworths staff!) he would try to read the name then very excitedly say "You got a tag!!!!" and dance around with excitement.
Maybe life would be more fun for us all if we got excited about everyday objects like name tags.
So if you see us and Ethan interrogates you about whether "you got a tag?", you'll understand why!!

Friday, July 9, 2010

Social Skill Milestones

After about 3 years of practice, practice, practice Ethan can now fairly reliably say "My name is Ethan" when he is asked "what is your name?". We have spent endless hours practicing in ABA drills and in the community. But the other day Ethan surprised me by adding extra detail to his usually limited social banter.
We were waiting at our local medical centre to see the GP regarding Ethan's cough and cold. A little 3 year old boy came into the children's play area where we were waiting. Ethan said "little boy, you sit on this chair" - which he did. The boy's father said "hello, this is Dane and my name is Mike. What is your name?" Ethan looked at the man and said "My name is Ethan", then Ethan looked at me, gestured toward me with a wave of his hand and said "And this is my mummy!". I was speechless. I have never heard him introduce me to anyone before - we have never even practiced that- and he said it so clearly, combined with lovely gestures! My eyes welled with tears of joy and pride in how my beautiful little boy is learning and developing!

Sunday, June 27, 2010

Some progress!

We are amazed with the rate of Ethan’s speech development this year so far. Something seems to be “clicking” in his brain in regard to speech and language. And since he had grommets inserted in his ears in October last year, being able to hear properly obviously helps too!

Due to Ethan’s problems with coordinating his mouth/ lips/ tongue, his articulation continues to be difficult, for example substituting “f” sound with “g” or “k” (says “gish” instead of “fish”) and “l” with “w” (says “wuv” instead of “love”), difficulty approximating “s” or “sh” and the more complex consonant blends “tr”, “st”, “bl”, “br”, “dr”, “pl” etc! This makes his speech difficult for others to understand and he still needs me to interpret his speech at times, but not nearly as often as before.

His sentences are becoming longer/ more complex spontaneously and everyday I am astounded by something he says. We have worked so hard at getting him to elaborate on his nouns by adding an adjective. Now he rarely just says “a ball”, instead saying “that’s a big red ball” without prompting!

I think being at Kindergarten and around other kids for two full days a week has helped spur on this burst of speech and language progress. It delights me when I drive him home on Wednesdays I can ask him to tell me about the book he chose from the library, and he can answer eg. “library book about a lion (“wion”)”. I can ask him what he did at school that day and he can list a couple of things eg “I played with teddies with Sharon” or “I build blocks with Samuel”.

Ethan is still far from “age appropriate” with speech/ language development but we are excited with his progress. Alongside his improved speech is much improved interest in others and a strong desire to share his thoughts and interests and social games, particularly with Nathan, Eli and I. It is good to celebrate and reflect on the gains he is making!

Saturday, February 20, 2010

Simple Pleasures: chocolate chip cookies


Today I baked what I rank as one of the most delicious batches of chocolate chip cookies that have ever emerged from my oven. They were superbly crunchy on the edges, then moist and creamy inside. Eaten still warmed from the oven, they tasted heavenly. The boys seemed to think so too.
Perhaps the perfection was due to Eli’s assistance in mixing and rolling lopsided drops of cookie dough in his chubby little fingers.
Once baked, Ethan helped himself to cookie after cookie, until I placed them high out of his reach. I managed to exert some degree of self-control and limited myself to two cookies.

Here’s my recipe:

150 g butter
1 cup brown sugar
1 egg
1 teaspoon vanilla
1 ½ cups self raising flour
1 cup chocolate chips
Sometimes I add ½ cup crumbed walnuts but I omitted them today because this batch needed to be nut-free so Ethan can have some in his school lunch box.

Cream butter and sugar until pale; beat in egg gradually, then add in vanilla. Mix in flour, choc chips and nuts with a wooden spoon. Roll out teaspoonfuls onto a greased baking tray and place in 180°C pre-heated oven, for 12- 15 minutes. Once cooled, they can be placed in zip lock bags and frozen.

I find baking to be quite therapeutic - I enjoy creating something delicious with my hands. Baking generates feelings of contentment and happiness, as I am busy in my own kitchen; delicious aromas wafting through the entire house; relishing the enjoyment the boys show in participating with the baking process and then tasting little treats they have helped to create, with a freshly brewed cup of tea. These are simple pleasures, but something as basic as baking seems to right things in my world, even if only briefly.

Thursday, February 11, 2010

The Inevitable Perils of Comparisons

It seems every time we go out and spend time with other “neurotypical” (to use a buzzword) children, I come home with sadness and disquiet in my soul. As much as I try not to, I inevitably compare Ethan to the other kids. Everyone says you shouldn’t compare, but I find it impossible not to! My hope is that as I grow more accustomed to Ethan’s diagnosis and more accepting of his disability I won’t compare as much.

The sadness is not so much for my loss of the same depth of relationship that other parents have with their 4 year old children (although that is part of it). I feel sadness for what Ethan seems to be missing out on, and what I fear will lead to him being rejected by his peers. The other day as Ethan played on the prep playground after school, I watched as an older boy tried to strike up a conversation with Ethan. It went like this:

Older child: “Hi are you in kinder?”
Ethan: no eye contact, after a 5 second delay “yets” (“yes” – his standard echolalic response)
Older child: “I’m in prep. Do you know where that is?”
Ethan: no eye contact, no response
Older child, pointing: “Prep is in that building over there, see?”
Ethan: no response, no eye contact, climbs past the boy


My heart ached, I felt sad for the other boy who had put so much effort into that interaction and received so little in return; and sad for Ethan who doesn’t understand or respond. We have spent hours coaching and drilling him in “parallel talk” in therapy, but his ability to generalise social responses is so inconsistent.

His poor physical skills also concern me – he stumbles along, running too fast in his loose gait, trying to keep up, falling over constantly, tripping, falling off playground equipment, getting distracted, with perpetual bruising. Other people must see me as a “helicopter mother”, always hovering around him, but they don’t realise how uncoordinated and accident-prone Ethan is. And his inattention, poor visual scanning and limited awareness of safety mean that he needs constant supervision.

I want to just stop worrying about his differences and delays, which seem to be ever-increasing as his peers’ development speeds up. Lately I find myself often thinking about his longer term future as the extent of his disability becomes more evident. It is sobering and anxiety wells up – even though I am so grateful to God for who Ethan is and what a precious, sweet son he is.

Sunday, January 31, 2010

Starting School

There are many emotions and thoughts spinning around in my head as the first day of school for my firstborn nears! It seems such a momentous step for Ethan, he is certainly growing up. I am not sure that he is ready, in many ways he is not. He is still not toilet trained despite my best efforts over the past few months. Eli picked up the skill in about a week, but for Ethan it is very difficult. I am a paediatric O.T., if anyone has skills to toilet train a child with autism it should be me.
His speech is somewhat unclear and difficult to understand for those unfamiliar with him and his oral idiosyncracies. Ethan has made remarkable gains in speech since he had grommets inserted in October 2009, but he is still so very far behind his peers. I fear the other children will not be able to understand him and that he will be too unresponsive, and that they will give up on trying to communicate with him.
He has motor delays and a lot of kinder skills are a great challenge for him.
BUT he is interested in other children, he is readily attempting to communicate verbally and nonverbally, and his attention is much more sustained thanks largely to Applied Behavioural Analysis (ABA) therapy he has had over the past 6 months. He enjoys structure and routine and I think he likes a challenge, and enjoys learning. He loves to sing and listen to stories in a group format. He might be ok!
I think he is ready for the structure and increased demand of a school environment. My hope is that increased exposure to his peers and their language and social skills will assist his development in these core areas. If he continues to have fine and gross motor difficulties life will be harder for him, but if he can develop good social skills and communication, his future will be so much brighter!
I have written a social story entitled "Ethan is going to big school" which he loves. He seems to be anticipating starting school - most mornings he has a tantrum when he asks "I go big school today?" and I say "no big school today". He is looking forward to it, whatever his concept of school is. We are as prepared as I know how, at least in terms of what I can control. Uniform, backpack, cushion for rest time, lunch box, drink bottle, social story... I guess in another week and a half we will see how prepared Ethan really is!

Thursday, January 28, 2010

Inagural Post

I've decided to join the blogger fad. In part it will be a welcome creative outlet - prior to having children 5 years ago, journal writing was a solace for me. It seems to have slipped, along with other creative pursuits I would follow - surfing, painting, playing my harp...
The more important impetus to blog is about working through my feelings and experiences in having Ethan, who was diagnosed with Autism Spectrum Disorder about 2 years ago.
My blog is titled "An Insider's Perspective" because it harks back to my honours thesis, similarly titled, that I completed in 2000. My research was an exploration of attitudes surrounding disability - and my findings were basically that a person's position with regard to disability seemed to strongly determine their attitudes about disability. It probably sounds an obvious conclusion, but it was still interesting: that people who have a personal experience with disability or have a family member with a disability, have a more positive attitude about disability and people with disabilities.
Little did I know that 8 years later I would find myself with an insider's perspective on autism. I studied Occupational Therapy and have spent majority of my career since graduating in 2000 working in the area of paediatrics. My last position before I went on maternity leave to give birth to Ethan, was in a team providing diagnostic and intervention services for children with Autism Spectrum Disorders. At the time one of my deepest fears was having a child with Autism. It seemed to me to be the worst thing that could happen - to lose your child to a disorder that impacted so heavily on your relationship with your child.
Well, my insider's perspective of having Ethan has changed my attitude about Autism. I have realised that Autism is not limiting - the diagnosis helps me and others to understand Ethan and to know the best ways to assist him to learn and communicate, but it does not define him. He has such happiness, affection, joy and ability to communicate. Our pre-conceived idea of Autism is so very narrow, that we tend to overlook the many positives our children have.