Luke

LUke's Story

After a 12 month wait, Luke was diagnosed with ASD with possible intellectual impairment at 2 years and 10 months of age. Leading up to Luke’s diagnosis, eye contact regressed and he was becoming increasingly withdrawn. He went from using 10 to 15 words to becoming silent by around 19 months. At the commencement of therapy, Luke did not have any receptive or expressive language and his sole form of communication was hand leading. He had an attachment to several objects that he carried with him everywhere. His first formal session was incredibly difficult and it was hard work engaging with Luke. We immediately put together a team of therapists with Deb taking on the bulk of the therapy, taking advantage of every potential teaching situation. We had many tantrums. He didn’t find much enjoyment in people and it was hard to sustain interaction with him. I remember thinking he has so much to learn and there was never a question from Deb about pushing on and getting through the behaviour and that’s exactly what we did.

Luke specifically struggled to learn the labels of objects and names of people. We started with a Picture Exchange System and this showed us a glimmer of hope. We used COMPIC for nearly every game, instruction and activity. We worked intensively on getting labels of everyday items. Deb and I reflected back on our torture of teaching cup, spoon, teddy, ball and car in every way possible. With dedication and sheer determination from Luke’s therapy team, we got there and his vocabulary started to increase. With language came better quality interaction and some alleviation of frustration.

Things started to come together slowly and within 12 months there was a significant difference in his behaviour, level of interaction and language. Seeing this success was so integral to continuing with the same level of intensity. Luke received 2 full years of therapy before beginning school, at which stage, he enjoyed being around peers and had some well-established social skills that were also taught in his program. We still maintained an intensive therapy regime and his education assistant was also on board with our goals.

Once we shifted the focus onto academics, we were then faced with the next big hurdle of learning phonics and reading, another form of symbolic language that Luke really struggled with. Now, 8 years later, reading and spelling is a strength of Luke’s.

Fast forward to 16-year-old Luke and I am absolutely blown away. There was never a doubt that Luke had personality but he is truly a delight to be around. He is thoughtful, articulate, polite and incredibly funny, with a great sense of humour. While sitting and chatting with Luke I couldn’t help but acknowledge such a profound contrast to the day I first met him. There is barely a trace of that frustrated, nonverbal little boy with an unbreakable attachment to his ‘toy of the day’. He has a great level of independence including cooking his own breakfast, baking, daily chores and getting his homework completed. Transitions in life still requires a lot of preparation and in school, his weaknesses lie in mathematics. Yes, he has obsessions, and he can certainly talk at great length about them but he is so good at conversing and involving the listener that you just can’t help but want to talk about them too! Luke’s goals are to become a comedic actor and his loves Drama at school.

Deb and Neil reported the following regarding Luke’s journey:

Why ABA?

I went to see what else was available and just couldn’t see that working for Luke. ABA was the only therapy I could see would work for him. I knew it wasn’t going to be easy and we would be up for a fight but he needed the structure that ABA offered in order for him to learn.

What was Luke’s therapy Regime?

He had up to 30 hours of therapy a week, some formal and some incidental day to day. He had therapists in every day, sometimes 2 sessions a day. ABA has become a way of life and there are still things that need correcting and tasks that need to be broken down. In terms of formal therapy, we invested over $18 000 per year to maintain his intensive program for 2 full years then therapy still continued into primary school. We would do it all again as well. We just did what we could and there was no question of doing that.

What were some of the challenges early on?

Due to his inability to communicate, Luke’s behaviour was challenging. He was frustrated and very angry. Absconding was a big problem along with his obsession for water. We always needed to have hold of his hand or have him strapped in his pram. Luke also had severe gut issues which took a good 3 to 4 years to correct and get regular toileting happening. He had a love for small objects with handles that he would take everywhere with him. He stimmed while he had these. Cutting his hair would take Neil and myself 1 hour and 45 minutes holding him down. I absolutely hated it.