Three months ago today…

Three months ago today the first post went up on this blog. A lot has happened in that short time that has made me HAPPY!

There has great feedback from mums and dads who have been able to access resources and find hope and perspective. Its been wonderful to hear from friends and strangers who have learned something new and seen things in a different way. I have felt connected to people all over the world and to those who live in my neck of the woods. New friends have been made (both in cyber-space and in ‘real-life’), and I’ve discovered new blogs that have encouraged and inspired me. Its been exciting to give a couple of ‘talks’ about our journey to different groups, and one of my favourite autism experts has emailed me and reposted my blog.

It’s been fun and I have LOVED it!

Over three years ago our family went into a ‘bubble’ of sorts. I stopped chatting on the phone with friends. I got off Facebook (yes, I did!). There was the need to free myself from every other commitment, except the one big job at hand. The job was to learn all I could, and to help my son in any way I could.

In many ways in those early days it was such an isolating journey. The workload was enormous. Grappling with such difficult emotions was tiring and I had to ‘reframe’ situations over and over again. Hope was something that threatened to be taken from me with just a strong puff of wind.

Times are a bit different now. Its the ‘new normal’. I am back on Facebook (with a Facebook Page and all!) and chatting to my friends on the phone is a regular occurrence. Its been refreshing to look back and see how much we have all learned and how far we have come. I feel so fortunate and proud and blessed to be the mother of my spunky four year old. Sharing about different resources and stories in the blog has been energizing.

There has been 18 posts made, people from 27 countries have read the blog and there has been just shy of 4, 000 views. Unexpected…but so cool!

I have felt heard. I know for sure I am not alone. I have felt so much hope. Thanks folks…here’s to the next three months!!

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Gradual Exposure

I am not sure what the stat’s are on this one, but it could be fair to say that most parents of young children have experienced at some point the ‘shopping centre meltdown’. You know…the one where your child tantrums and where everybody looks at you, and for a moment you are THAT parent. The flustered, apologetic, red-faced, and exasperated one.

Relate to that? Or even observed that?

Except in my picture the screaming was louder, the child was inconsolable, and the intensity of the meltdown seemed just that little bit more intense. Also this didn’t just happen on an ‘off day’ for my young child, it was every time. By the time my son was diagnosed at one and a half years of age with autism I had already given up on going to the shopping centre. It was just impossible. I did not know why this was happening and I did not know what to do…apart from just doing the shopping online.

Really the meltdowns were just the tip of the iceberg. There were very real safety concerns with my son running off or bolting, my son struggled to sit still and wait for even 10 seconds, and his lack of responsiveness to my verbal instructions rounded out some of the struggles we faced just leaving the house, let along going to a shopping centre.

When the wonderful therapist Sarah stepped into my universe just before my son’s 2nd birthday, I received the education I so desperately needed. She helped me to understand the behaviours displayed by my son in these new, unfamiliar and often chaotic environments that served to put my son into complete sensory overload. Sarah helped me to see things though his eyes – and I got it. So a strategy was adopted to address ‘Community Outings’, the term now used to describe going to the shops or anywhere in public. It has helped get us to where we are today.

It can be summed up to two words: ‘Gradual Exposure.’

We (Sarah and I) started with a walk (Kiddo in stroller) to the bank-a small, calm and quiet place. It was baby steps. First I asked the bank manager if we could ‘practise’ being in the bank. I just said I wanted to get my son used to it. She said that would be fine and so we began. We would literally walk in the front door, through the bank and then out the back door. We did not stop at all.

I did this once a week with Sarah and then a couple more times during the week with just me and Kiddo. It became our little ‘ritual’, a routine of walking to the bank. Then I ‘extended’ the trip to walking in, sitting down on a chair for 30 seconds and then walking out the back door with him. As soon as I saw my son start to ‘twitch’ a little I would get up and go. Slowly this became a few minutes…and then a good 5 minutes …until probably after about four months my son could sit in his stroller in the bank for up to 10 minutes and I was happy with that. I made sure I praised him every time he made even the smallest progress.

At 10 minutes I felt we had reached a happy ‘age appropriate’ time and I was actually able to go to the bank and do some banking. Kiddo and I then moved on to the coffee shop, the corner store, the shopping centre…then church…then birthday parties…and road trips. These outings are now in the more ‘do-able’ zone as opposed to the ‘too hard zone’ . I still always have to keep ‘age appropriate’ expectations in mind, consider which accommodations may need to be made and what supports to put in place, and sometimes Kiddo does just have a ‘bad day’ and we bail and that’s OK too.

Little by little over the years our son’s tolerance and ability to cope with being in the community has increased, and in certain new settings and scenarios he can thrive. Last weekend we went on a road trip down south and went canoeing as a family. It was magical and Kiddo just loved it!

The gradual exposure strategy has been applied to other things like feeding, toilet training, going to the doctor etc. We are currently working on visiting other people’s houses and actually sitting down there to eat a meal. It’s not happening consistently right now…but as we keep presenting our son with the opportunities and the supports needed I know he will be able to do this too one day.

This community outings project is one journey we are in for the long haul…we’ve got time…

Sitting in a Waiting Room

I seem to spend a bit of time in waiting rooms.

Recently I picked up a copy of ‘In Psych’ – June 2012 magazine whilst in one of those waiting rooms to have a look at. Lo and behold I opened to the following: ‘The trouble with autism: Delays in early identification and diagnosis’.

Seriously, what are the odds?!

Written by Associate Professor Cheryl Dissanayake, the article outlined the results from a study that set out to identify infants with ASD (Autism Spectrum Disorder) between 12 and 24 months of age.

Currently the mean age for diagnosis in Australia is 4 years of age. For some children on the spectrum who are verbal and cognitively able identification can be later. Speaking from experience, accurately identifying autism in a young child is absolutely not an easy task. There can also feelings of distress and guilt experienced when a diagnosis is not made in a timely manner.

Having a ‘better system’ of identification for ASD’s would be a game-changer for countless families and their children.

So back to the study…241 nurses were trained in Victoria, Australia in a 2.5 hour session to identify infants with an ASD during their routine check-ups at 8 months, 12 months, 18 months and 24 months of age.

It was termed ‘developmental surveillance’. I like that term.

Over 20, 000 children were seen by these nurses. Of the children referred by the nurses for a standardized assessment, 81% met the criteria for autism. Only one child was incorrectly referred and the remaining children had either a developmental or language delay. A follow up study at preschool age indicated a rate of 86% in terms of diagnostic stability.

I think those results are pretty amazing.

The author states that ‘the earlier this (accurate diagnosis of autism) is possible, the more likely the child will be able to make the necessary developmental gains.’ This point is highlighted in the article:

‘The importance of education about early characteristics of ASD and the value of early identification, diagnosis and intervention cannot be underestimated.’

The author continues, ‘Indeed, early identification, diagnosis and intervention provides the greatest opportunity for better long-term outcomes, including greater independence, decreased burden on families and communities as a whole, and better quality of life for individuals and their families.’

That paragraph captures a simple concept. We have an opportunity to make a big difference.

Education is key and the message from this research study is clear: do not delay.

So here they are: 8 key signs in the second year of life (12 to 24 months) indicating risk of autism (as stated in the above mentioned article):

  1. Reduced or atypical eye contact
  2. Failure to couple eye contact with other communicative behaviour, like smiles
  3. Reduced social smiles
  4. Failure to initiate pointing, particularly to show/share
  5. Failure to follow a point
  6. Reduced to no response to name call
  7. Lack of imitative behaviours, including waving bye-bye etc
  8. Limited or no pretend play

To view the ‘M-CHAT’, a modified checklist for autism in toddlers, go to

http://www.autismspeaks.org/what-autism/diagnosis/mchat

Thinking about…

When I write posts for this blog I have four ‘audiences’  in my mind’s eye.

It was actually not quite knowing how I would be able to ‘cater’ for these different audiences that prevented me for quite a while from writing about things in the first place.  I actually love to write and after all my counselling training am well aware of its therapeutic benefits.  Blogging is taking the therapeutic benefits of writing to a whole new level!

The four audiences I have in my mind are represented by four actual people.  In respecting privacy I will change their names (denoted by a *).  The first person is Matt* and he represents for me all the people who read my blog that are unaffected by autism.  Matt does not personally know anyone with autism. Matt is a nice guy in his early 20’s and is married but has no children.  Matt represents an audience that is both male and female, but I really find a sense of satisfaction from knowing that the men are reading my blog.  A bit weird but the truth!  I think it is partly because autism affects 5 times more males than females, and also because men are under-represented in the early intervention therapy scene and the early years teaching profession.  It just makes me happy that Matt is learning a bit more about autism and is getting to know my kiddo. I’d like for all the Matt’s of the world to know and care about someone with autism!

The second person is Annie* – the mum who has a child who has recently been diagnosed with autism. She has other children and her hands are full.  I tread lightly and with the utmost care for this audience.  This audience includes mums and dads.  Their hearts are fragile.  They are tired. The rollercoaster of emotions is so difficult.  I want Annie to find some hope and strength.  I do not pretend it’s an easy road, but for your children you are prepared to go off-road as needed.

The third audience is people who actually have autism.  They can be people with autism who blog, go to college, have jobs and beautifully articulate what their lives are like and how they feel.  They can also be people with autism who will never read or speak.  The young man I picture with autism is named Aaron* (in his late teens) and is from a counselling appointment I observed while doing my Masters internship.  I am mindful that I write respectfully as he is deserving of this.  I speak for my own situation, but I do not have autism and I am careful of trying not to misrepresent people who do.

My final audience is actually one person.  My son. He does fall into the above group of ‘people with autism’ but given that he is my boy he gets a category in my mind all of his own.  I picture my son as a 25 yr old (I don’t know why that age but that’s just the age I have in my head).  I picture him reading what I have written. I ask myself  whether or not he will be proud of what I have written.  Will he know from what I have written how much we love him.  How we thank God for him. How darn proud we are of how hard he works. How joyous we are when he laughs and how sad we are when he struggles.  How he has made us better people. How my hubby calls me up to say “I just love our kiddo” and that’s the only reason he rang.  He just had to tell me that!   I hope my future 25 yr old son will get all that from what I wrote about him as a 4 yr old.

Matt, Annie, Aaron and Kiddo.  I’m thinking about you.

Skater Kid

There are some common questions I have been asked over the past three years in relation to autism and my son. One common question I like being asked is whether my child has any special skills, interests or talents.

Many people with autism have a deep interest in certain topics or activities. My son is a person with passionate interests! Sometimes these interests are referred to as obsessions, depending on how they are perceived. Autism expert Paula Kluth writes in her book ‘You’re Going to Love This Kid!’, that people with autism might be commonly interested in electronics and transportation, but some interests may be more unique like those of Sean Barron, a man with autism, who has a great interest in the number 24, and a fascination with dead-end streets. Fascinating fascinations!

My son loves numbers and the beach, he is good at directions and amazing at technology. Kiddo’s number one enduring passion to date however is riding on his scooter at the skate park. Riding the scooter is a fairly mainstream interest these days for boys (and a few girls) who like to push the limits. Having a more mainstream interest does help a lot with inclusion. My son’s passion of choice has certainly been embraced, encouraged and managed by my hubby and myself. Sometimes the ‘managing’ part has been a challenge for me…my son is FAST and FEARLESS! I definitely have a few extra grey hairs from it all but I am grateful my kiddo (and my hubby) love this activity. My hubby has his own scooter and rides with my son. I now know about quarterpipes, half pipes, bowls and ramps. I know what qualifies as a great skate park and which ones should be avoided. I also know what to look for in a decent pair of skate shoes, skate clothes, scooters, wheels and helmets.

This skatepark-ing passion has swept up our little family and has taken us pretty much all over the metro area, into the countryside, down south and was even incorporated into an overseas trip to the USA earlier this year. I’m not sure how long this passion will last, but for now my son has found something that makes him happy, that he is good at, and that makes the other skater-kids think he is AWESOME.

These are some of my favourite pics from our recent skate-park adventures! Brownie points to those who can pick the Las Vegas Skatepark…think hot…