There is an old Irish proverb that states: "It is in the shelter of each other that people live"' and I like to think of this as being apt, if somewhat romantic view, of behaviour modification. Children learn what they are taught by who teaches them and how that information is passed onto them.
And for children with behavioural abnormalities the WHO and the HOW factors are of critical, if not, vital importance. These two components make the difference between success and failure, between the desire to learn and the inability to care whether learning takes place or not.
When our family first found Ann-Marie, you could say that we were already 'seasoned' ABA veterans. We had had the unfortunate experience of the strictly traditional Lovaas approach and the other extreme of 'it's playtime!'. Both of these forays had left us frustrated, angry and considerably lighter financially. Yet we persevered because we truly felt that somewhere out there, there had to be someone who was just right for our child. The problem was compounded by the fact that, with a badly inflamed bowel condition, Enya's strict dietary schedule and environmental sensitivities (to perfumes, plastics etc.,), meant that finding someone willing and able to work with her was never going to be easy. Yet Ann-Marie greeted our obvious caution over starting yet another workshop with patience and persistence. The whole attitude was that the focus had to be shed squarely on the child - and that through consistency, Herculean patience and, above all, love that Enya could learn to take her place in her own immediate family and later on, the world. Now, with hindsight, I am so glad that we decided to give her that chance to work with Enya. For the difference in our daughter, in a mere 15 months, has been amazing.
Within weeks of starting 'yet another ABA program', Enya learnt to label objects from her everyday world, she learnt to recognise and read more than 50 different words, to sort objects by shape, category and colour. Self help skills soared - she is now able to dress herself (she now insists on selecting her own outfit for the day), can set the dinner table, brings me her plate when it is time to serve up, now sleeps in a bed rather than a cot and is toilet trained. Her imitation skills, which initially were immensely difficult for her to acquire due to previous negative programming, have raced ahead. She can wave, dance, copy complicated structures, make pictures out of Fuzzy felts and like nothing better than to dress up all her sister's Barbie dolls and put them to bed. The other day, her dollies were left out in the rain and got rather wet. Undeterred, she rushed into the laundry and crammed them all into the dryer for a quick spin!
Each time the curriculum has moved onto a more challenging level, Ann-Marie has been there to tackle any potential problem areas, with detailed carefully drawn up plans to resolve them. Most program supervisors claim that their methods are individually tailored to suit the needs of the child concerned. However, having been on the receiving end of two other 'highly regarded' programs, I have to say that individuality of programming is, for the majority of supervisors, a luxury. But for Ann-Marie and the team at IEC, individually tailoring programs to each and every child remains the cornerstone and anchor of the quality of service provided. Looking back, I am so pleased and so relieved that we did in fact say 'yes' to Ann-Marie all those months ago and I remain convinced that flexibility on behalf of all of those concerned (parents, siblings, program supervisors and assistants) is the key that turns the lock. Listening to parental concerns, as opposed to brushing them aside for the sake of 'the program' is, for our family at least, the hallmark of the quality of service IEC provides.
Some people come into your lives at the right time and can help carry the burden of living with a child with very special and unique needs. For it is, after all in the shadow of each other that we do indeed live. Thank you Ann-Marie.
Claire, Andrew, Enya, Julie, Catherine and Liam Porter.
Our son Terry was diagnosed with Autism Spectrum Disorder at the age of 2 years 3 months. He was a happy child but had practically no gestural or verbal communication.
He started on his ABA program two months later and 13 months on, has made great progress. We started using PECS and now Terry uses language easily for requesting, protesting, and is using it more and more for commenting in general.
Our greatest challenge has always been compliance. Terry initially objected strenuously to the intervention and it took about 3 months before he settled into it. We started at 1 hour sessions once a day, and now do 3 hour sessions 9 times a week. Terry also attends two 2.5 hour sessions of 3 year old kinder a week with one of his home therapists as an aid.
I would recommend ABA to any parent of an autistic child, although every child is different, the results may not be the same in every case.
OUR MAZE THROUGH AUTISM AND OUR SURVIVAL!
Our family’s journey into the maze of Autism started in late 2001, after our son Jordan, (now aged nearly six) was not speaking at the age of two, like most children were at his age. From there, we took him to our family doctor who made a referral for a hearing test. After numerous hearing tests, Jordan was diagnosed with a severe hearing problem and was fitted with hearing aides (prematurely).
Although having some suspicions that Jordan may be Autistic, I think we wanted to believe that he had hearing problems as we perceived this as “the lesser of the two evils”. However after we sought further independent testing, Jordan was found to have normal hearing and soon after was given a diagnosis of Autism in mid 2002. Although this was not a total surprise, we still grieved and went through the normal cycle of emotions as most family’s do after their child has been diagnosed with Autism (or any other disAbility).
We were lucky enough that the psychologist that made the diagnosis along with the pediatrician, informed us of ALL our options including early intervention services (which offered only a couple of hours per week and even less so today) and more importantly, Applied Behavioural Analysis (ABA). In looking back to where Jordan was a couple of years ago and where Jordan is today, we do not think that Jordan would be where he is today without such an intensive program, which targeted all areas of his development (social, communicative, imaginative, imitation, motor skills, emotions etc).
Implementing an ABA program was like going back to school all over again. There was so much to learn, so much to organize. (between creche/kinda, ABA and Early Intervention, there was not much time for anything else). We felt like it was going to take forever to get the program running. In fact it didn’t!!! We initially were so overwhelmed that we felt like giving up on the program before we even got started. There was reading up on Autism and ABA, training for ourselves, interviews of potential therapists, training for therapists, locating/making material for the program and lots of screaming and non compliance by our child at the commencement of the program. Our family’s life completely changed and all our energy was put into running the program (and into our new baby!!). During the program, sometimes progress came quickly and at other times painstakingly very slowly, but my message to all new families (or current ones) is DON’T GIVE UP!
Our family ran a ABA program for almost 3 years. I can honestly say that the program has made a HUGE difference to both Jordan and to our family life. Jordan at the start of the program was not interested in the environment around him (little less the people), did not know how to communicate (nor was interested in doing so), nor was he socializing with others. Today in 2005, Jordan is attending mainstream school, doing a pre prep program with an integration aide, is able to speak in sentences, socializes with other children (he still has some difficulties but we are working on these), is curious about his environment, learns from it and interacts with it.
Jordan will always be Autistic, and will always struggle with some things, but without ABA, he would not be where he is today and nor would our family.
THANKS ANNE-MARIE AND I.E.C.
Marea, George, Jordan and Harrison
I guess I started to think that something wasn’t quite right when Sam was about 10-11 months old. All the other kids in playgroup were copying their Mum’s actions, clapping, pointing etc. Sam was doing none of that. The Maternal Child Health nurse said “there must be something that he copies you doing!”. Nope, not a thing.
The other children started to walk, Sam did not. He would leave that until he was 22 months old!! He simply wasn’t interested in going anywhere. He was terribly isolated and alone, and therefore had little motivation to get going.
Between 12 and 18 months, the terror set in. Sam would scream in absoloute terror at things often unknown to us. Other things were more obvious, a person coming in to the house would result in a terrorised screaming session. We went to visit grandparents in Warrnambool one weekend. The strange environment sent Sam into the stratosphere. His face would be bright red and contorted with fear. Nothing could console him, except a ride in the car. I know every street in Warrnambool!!
Meanwhile, no play skills at all were developing. Unless you call spinning wheels on a car incessantly or building perfectly inverted pyramids with Leggo a playskill. That was pretty much the extent of his play ability. He was terrified of other children, and would scream if they entered the home. Around this time, Sam started to display a peculiar self-stim behaviour. He would tense his whole body when he was exicited with something. It was most odd to watch.
Family members were all saying ‘oh they all develop at different rates’, or ‘they are all so different’, or ‘he’ll do it in his own time’. I was thinking to myself that nothing could be further from the truth. Having a background myself in Disability Services, I began to suspect Autism. I was consumed with fear and dread. This wasn’t supposed to happen to me, this happens to other people. I spent many a day in tears, curled up in a ball, in despair.
I decided to kick into some action, I couldn’t sit by and let this continue. Initially I sought support from Specialist Childrens Services, through Dept Human Services. Whilst the staff were helpful we still weren’t getting Sam to do anything. They referred us on to an early intervention centre. The psychologist there confirmed the diagnosis of ‘autism spectrum disorder in the moderate range’ in consultation with our paediatrician.
I attended the sessions at the early intervention centre with Sam. I recall watching him stim whilst spinning the tractor wheels and alongside him was the speech therapist saying "the cow goes moo-moo." It was teaching him nothing he was oblivious to her presence. Suffice to say, we didn't last long there! At this stage, Sam is about two and a half years old, and completely mute. I rang Autism Victoria just to get more information on services etc. The lady said "would you like me to pop in a pamphlet about ABA?" I had never heard of it, but what the heck, pop it in the envelope.
The Yellow Pages always come in handy, and I sought the services of a private speech therapist. She introduced us to the PECS system, and after a couple of sessions and my own research I developed this method myself with Sam. We had no need for fancy computer programs, I just got to it and drew things myself to make the cards. Meanwhile the pamphlet about ABA arrives. I read it, amazed. Lots of surfing the net and phone calls followed. Within a couple of weeks our minds were made up, ABA was the way to go. I also read the Catherine Maurice book, "Let me Hear Your Voice" and that was it; years of hard slog ahead of us.
We contacted several service providers, but IEC was the most prompt in responding, and was very professional in their presentation. Our consultant, Kim Sheppard was a gift. She assessed Sam and of course found significant skill defecits. A programme was developed, at last we had some thing to DO with Sam.
I found it relatively easy to source therapists. So in a month or two our program was up and running. We continued with PECS and the speech gradually started to roll in. Initially, therapy sessions went well, up until the 6 week mark when Sam decided "hang on a minute, they are making me work here!!," so tantrums for hours followed. We worked through it patiently, hour after hour after hour. Repetition, reinforcement, repetition, reinforcement. Success came with the early programs, So Kin gave us more programs. Early skills for imitation and play skills were the first programs.
Something went click in Sam’s brain. We were getting through, and he was coming out of his shell. His play skills got better, his language continued to grow, we worked on pronounciation of words, we challenged his tolerance of things, we challenged his sensory limits, but all in a loving and reinforcing way. I found it hard to keep the reinforcers fresh and appealing to him, as he tired of things quickly. But as he came out of his black hole, a hug and a ‘well done’ was all he needed.
Our way of life changed. As a family we spoke differently. "Good talking Sam," "good using your fork Sam," etc. etc. - the language of ABA. We applied it to everything we did. Sam went through a phase of going ballistic if the bath toys weren't removed from the bath prior to the plug being pulled out. Such rigidity was not acceptable. He would scream and scream. We would calmly repeat "it doesn't matter" on the third night of screaming the house down, he looked at us and said "it doesn't matter Mum." Issue resolved.
Sam had the incredible ability to generalise what he had learnt in the sessions to his broader environment.
After two and a half years of therapy averaging about 15 hours per week having engaged a total of 4 therapists over that time, at an average cost of $500 per fortnight, Sam this year started mainstream school indistinguishable from his peers. He is socially capable and socially aware. A recent comment from him brought total joy – he was playing basketball with his little brother he rushed inside to say “Mum can you make the basketball ring lower, Ben can’t reach it”. I continue to marvel every day at this gift. Recently he threw something on the floor and it broke. I saw him doing it out of the corner of my eye. I asked “who did that?!!” Sam looked at me and said ‘Ben did Mum.” People think I am nuts when I get excited that he is lying.
If not for the ABA program and IEC, Kim, Ann-Marie, Sarah, Dee, Helen and Jen, Sam would still be in the black hole of autism. Now he is academically advanced at school (a prep child reading at Grade 2 level), and has a small but firm group of friends. He is actively involved in everything he does. The future looks very bright.
Autism is no longer part of our lives.
Louise, Sam’s Mum