PARENT CONTRIBUTION (A Success Story)
Thank you, Samantha, for sharing this wonderful story – Ed.
LEWIE’S STORY
My name is Samantha Clark and I have a son, Lewis who was diagnosed with High Functioning Autism at the age of 3yrs back in 1994. He is my second son; he has an older brother, Josh (born ‘91) and a younger sister, Phoebe (‘98). I didn’t know much about Autism. My immediate imagination went to a child who would be in his own little world rocking all day, and of course Rain Man the movie, so my thoughts went to Lewie being completely silent, but he would be really clever with figures and Maths! This wasn’t the future I had hoped for him. We had moved to Melbourne for work and all our family were in Perth, so I was feeling quite distressed and alone.
Lewis did not communicate with us, no eye contact and no pointing or playing. Just spinning things or lining them up. He also did not like anybody to cuddle him (except for me) and he didn’t like certain textures in his mouth. He also became quite distressed when we took him into large shopping complexes or turned on the radio in the car. He would hold his ears and scream. He also had an amazing memory for directions, especially in the car. Goodness help us if we ever went a different route home!! He also liked to line things up….anything! When stressed he flapped his arms.
So I read – there was no internet back then, just a library full of outdated books. Also back then there were not a lot of children around with this diagnosis. People kept telling me he was just “developmentally delayed”. Unfortunately the first book I read told me that my son was most likely Autistic because I had not bonded with him as a baby, and as a result he would most likely not communicate with us. Great decision was to stop reading and try and find some help. We started Speech Therapy immediately, also learning Makaton (sign language).
I attended group meetings and was also told that he would have limited speech and communication with us, but to be hopeful, there was a chance he could get to a point where he could get a job with Qantas sorting cutlery. I was also told that we should consider putting Lewis into an Autistic School. Well, that really got me fired up to keep searching for something else.
We found the Elwyn Morey Centre, Monash University, which had the most wonderful people, they helped Lewie socialise with other kids. They were also an amazing support for me as a mother trying to find my son. Lewie attended once a week. I would park my car at the back of the Uni Car Park and Lewis would have to count every car, therefore taking me 20 minutes to get into the building. Thank goodness they gave me a park right in front of the building. Lewis was not very happy with that decision.
With Lewis attending Elwyn Morey every week and Speech Therapy once a week and also having interaction with his brother, we heard through word of mouth about Auditory Integration Therapy (AIT) to help with Lewis’s sensory problems. This was therapy for two weeks. To our delight and relief this was amazing and helped Lewie so much.
We were then moved back to Perth, which was great as we had also heard by word of mouth about the LOVAAS method and people talking about Applied Behavioral Analysis (ABA). I got in contact with ISADD, I met Jenny Bolland as soon as we arrived and had settled in.
My mum, in-laws and myself decided to learn how to do ABA and, with the guidance of Jenny, started our amazing adventure of helping Lewie to fit into our world. Hardest decision was – how many hours do we do? Do we keep him in a normal routine of kinder etc? After much thought we decided to do 13 -16 hours a week as well as Lewie attending Kinder (with an Aide), and a social group at the Autism Association and continue Speech Therapy. This was an intense three years; thank goodness we always had Jenny to guide and support us!
I covered my house with labels, as Lewie was a visual learner; things seemed to stick in his head if I could show him the words. We also did Social Stories and found the Sentence Master Computer program, which helped a lot, even if it did give him an American accent!!
Lewie started to give us words and words turned into sentences. Because we were only doing 13/16hrs of ABA, I turned everything that I did with Lewie into a lesson e.g. bath time was a lesson of Above/Below, Float/Sink. Breakfast was encouraging Lewie to ask for a spoon after I had given him a fork.
Lewie repeated 4yr old kinder and then attended Pioneer Village School in Armadale, which was perfect for him, a beautiful small country like atmosphere with amazing teachers and of course his aide.
Lewie was improving all the time, yes we did have tantrums and I was exhausted from staying up all night cutting pictures from magazines for lessons and just general mum-stuff. Just when things would be going along smoothly something random would happen, like accidentally getting him to school late. Lewie would not go into class because he wanted to line up first. Obviously the line had gone in. There was no way he was going into that classroom without a major fight! Then when we got him into the classroom he spent most of the day under the desk!! So Jenny told me to get him to school late at least once a week! Boy was that a yucky day of the week. But it didn’t take him long to realise that it wasn’t a big deal to be late. Praise the Lord the day he went into that classroom without a problem and he had a good day!
When my husband got a transfer back to Geelong, Victoria, it was a massive decision whether Lewie would cope or not. Do we take the risk after doing all that work? What if he goes backwards or worse forgets everything we have done. We also lose our support network of our family and friends……and Jenny!
We decided to go for it; if it didn’t work we would turn around and come home.
Lewie was managing to fit into mainstream school, yes still with an aid but only up until grade 3. Socialising was always hard, as a mother seeing him not get invited to birthday parties was probably one of the hardest things I’ve ever experienced! Just someone give him a bloody invite!! And yep, he did get 3!! Not much comfort when he had a sister going to birthday parties every couple of weeks!
In Geelong I found a support group for me and a beautiful child psychologist, Maree Stephens for Lewie. I found Richard Eisenmajer, who diagnosed Lewie as Asperger’s. I was still doing social stories and using the ABA in many ways at home and when we went out. We also found The Treehouse (a social group for teens. This was great!
Now for the best part of this story…….
Lewie finished year 12, in that time, he was in the school Wind Symphony Orchestra playing Euphonium (small tuba) and travelled to Hawaii for competition. He is now 21 and is in his third year at Deakin University in Melbourne doing a Bachelor of Creative Arts (Motion Capture/ Animation) and living on Campus.
As a mother, back when he was diagnosed, all I wanted to know was what his future would be like. Would he be able to attend mainstream school? …YES HE DID! Would he have a girlfriend? YES! Would he be able to drive?..YES! Would he be able to live a normal life….YES, YES and YES!
I am not saying this was an easy road. But if you put in the effort the rewards are amazing. I personally feel that if we had not done the ABA and incorporating into everyday life, that Lewie would not be where he is today. He inspires me every day; he has the gentlest soul and doesn’t let anything stand in his way. He is off to Japan in November!! We are so proud of him!
