I said this the other day and my son asked me ‘What is intense Mummy?’ I replied: ‘It’s when something is really Full On…then you say ‘that’s intense’!’ Not my finest definition, especially given that I am not sure Kiddo understands what ‘full-on’ means. It was all I could come up with in the moment.
The word INTENSE and my definition to my son landed in my head again when thinking about the topic of Autism and Early Intervention for this post. To be honest, I have had this post about Early Intervention sitting on my desk top (half written) for about six months now…the working title has been: Early Intervention: The key to what….exactly?
Every article in the known universe, and every professional working in the field of autism says Early Intervention IS.THE.KEY. My question is ‘The key to what exactly?’
Best outcomes, or even better outcomes for your child, right? That’s a little bit of ‘therapeutic jargon’ I have been thinking I would like to unpack-by asking some more questions of course!
What does ‘best outcomes’ even mean? What does that look like? What does that look like for my child. For my family? In my real life? My Kiddo celebrated his sixth birthday last week. By most accounts a child ages out of early intervention around this age. What ‘outcomes’ has my son achieved by the grand old age of six? Do I need to wait until he is an adult to know the real answer to the ‘better outcomes’ question? What happens when the early intervention stops? What’s next?
Does ‘Early Intervention’ live up to the hype?
For me early intervention was long. My son was just a baby by autism therapy standards when he started out with intervention at 19 months of age. That’s about 4.5 years worth of an intensive therapy program -a long stretch by anyone’s standards. The years did not fly by either. It was a long time, and it felt like a long time.
It was also effort. HUGE amounts of effort. It was money. A lot, seriously A LOT, of money. It was hard work. Damn hard work. For all the time, effort and money…did it do what ‘they’ say it would do?
Well…yes and no. This is where things get a bit tricky. My own opinion of what ‘good outcomes’ are has evolved and changed over the past 4.5 years. My understanding about autism has changed.
When my child was first diagnosed I was not given much hope of ‘good outcomes’ for him. I was secretly hoping the professionals had got it wrong. The diagnosis that is. If he just starts talking I thought…then he won’t have autism anymore. I was hoping the whole mysterious autism thing would somehow, magically, just go away. The same way is had appeared. ..from out of the clear blue sky…from nowhere anyone could really explain.
Then I started to read up and talk to more professionals, and then I realised that autism was not going to just go away (dare I say ‘Jenny McCarthy on Oprah show’ style). So I clung on to Early Intervention as “THE ANSWER”, even “THE CURE”. The holy grail for me was “NORMAL”.
By the time my son was the grand old age of TWO I was so exhausted from the fear, the pressure, the isolation and the work load I started to literally feel sick. I was crawling on my hands and knees to bed at night because my legs would no longer hold me up. Out of sheer necessity I started to make a shift. I began reading and watching clips by Temple Grandin (an adult with autism) and I started to redefine autism as a different way of processing the world. A different way of thinking. Different not less. ‘I love my child, but I hate the autism’ was how I felt now. I still wanted to kick autism in the groin. Hard.
By the time my son was age THREE I felt differently again. I was seeing my son’s personality getting stronger and stronger. He had now been in therapy for almost half his life now. I started to think less about autism and more about him as his own person. He was a joy! Hard work still. But I had more of an ‘it is what is it’ attitude. That crippling fear I had that somehow autism was going to rob me of my child was gone.
By the age of FOUR the three things they (the diagnosing professionals) said may never happen-had happened. My son was toilet trained (day and night), verbal (delayed but definitely verbal) and he was a socially interested and socially motivated child. Also his cognition was proving to be on-par with typically developing peers. At diagnosis it was stated that he was intellectually ‘at risk’. I now started to view developmental assessment reports more as opinions and guidelines, rather than fact or truth.
By FIVE my son was headed into a mainstream class with supports. I now had to make a shift again. I knew my son was not going to have the kind of autism that could ‘fly under the radar’- as I had seen with other kiddo’s on the autism spectrum. It was time to let this one go. I started to work more towards others being accepting and understanding of my son’s differences. I started to model this with intention..and I started to write this blog. I felt it was time for the world to see that this was not a one way street. The world needed to do their part to meet my son half way so to speak. He sure as heck had done his part.
Now my son is SIX. Today it is about my son being his best autistic self. Autistic is a term embraced by those with autism-so now it is fine by me. Talking and listening to autistic adults (Ibby, Karla, Sparrow Rose, Jonathon and more) has been something I wish I had done more of early on, but I am here now and I am listening to their words. It has been liberating actually.
For our family today best outcomes means our son is safe, competent and loved (thank you Bill Nason on FB’s ‘Autism Discussion Page’ ). Sure there are days when I want to wish away the painful struggles that come with autism. I am happy to say in terms of us going forward that EARLY Intervention for my son was not really ‘the key’ but more of a foundation. One that he can continue to build on in the years ahead. I guess my son will be the judge, and I know the day will come when he will share with me about how he found those ‘early intervention years’ and be giving me and hubby some performance feedback. Fingers crossed- I hope we did good! Early intervention was not only about my son however, it also put me on a steep learning curve about life, differences, disability and autism, gave me a different perspective on what is important, and put me in contact with many amazing and wonderful people, and families. Early intervention really has been the key for me to change.