In Search of a Book Title.

I am pleased to say there is movement at the station and my #KazBrooksBook project is coming along very nicely.  I am super excited!.

Kiddo at the Beach (a possible book cover photo) !!

Kiddo at the Beach (a possible book cover photo) !!

So the back story to this post is that I left Hubby to handle things on the home front last Wednesday night and I went out with friends and had adult conversations and laughed a lot.  The conversation turned to the topic of my writing and then to book titles.  So here are the ideas that were talked about at the table with my friends and now I am turning them over to you. Yes, you! I would love to know your thoughts and receive feedback, either by writing the number of the book title you like the best in the comments or feel free to play around with the title and the tag line and give me new ideas.  I am open to any and all suggestions!

Proposed Book Titles are:

#1 – At the Skatepark & On The Spectrum: Dropping In On Autism & Early Intervention.

#2- Engaging Kiddo: A Mother’s Story About Parenting her Young Son with Autism.

#3- As I Held My Breath: Parenting & Life on the Autism Spectrum.

#4- The Way We Roll: Parenting, Autism & Family Life.

#5- Snack-food, Sunshine and Skateparks: A True Story About Autism, Early Diagnosis & Early Intervention.

#6-Parenting a Young Child on the Autism Spectrum: Stories, Tips, Ideas & Inspiration from a Mother & Her Son.

thoughts, feedback…go! Muchas Gracias amigos!

Be Nice To The Autism

One of the current goals I am working on with my son is expanding his expressive language. It basically involves using a variety of different prompts to let him know he needs to give me more language.  It started with a verbal prompt, then just a gesture, we then faded the prompt to a facial expression that says ‘you need to expand on that sentence buddy!’ Yes, believe it or not, there is a face for that! Now it’s just ‘wait’ time. If I pause then he knows he needs to stretch out that sentence before I will respond.

It’s been going really well and it’s actually pretty adorable and thrilling to hear him expand on his thoughts out loud.

So the other day Kiddo and I went for a drive to run some errands and we were passing through some beautiful countryside, feeling happy and just enjoying the sunshine.  Kiddo was looking relaxed and staring out of the car window when he made this comment out of nowhere:

‘I’m nice.’

I immediately jumped in with an enthusiastic ‘Kiddo !! Your ARE nice!!!’

Kiddo then repeated himself very slowly: ‘Ummm.. I’m nice ….I’m nice … Ummm… ‘.  I knew immediately I had interrupted his train of thought. The wheels were still turning. He does this at times. Repeats something and I can tell he is still searching. Searching for the words, a way to construct the words into a sentence, and a way to match the thoughts in his head to the words that come out of his mouth. It’s labor intensive for him.

So I zipped my lip and waited.

Kiddo: ‘I’m nice to SOME people.’

A long pause from him then slowly… ‘But I am not nice to some other people.’ I waited again. I could just tell he wasn’t finished. Long pause from him again. He was looking out the window then he turned his head toward me and said ‘I need to be nice to the autism.’  My chest tightened up and I felt the tears sting my eyes.

Kiddo continued oblivious to me trying to keep it together next to him.

‘I need to be nice to my autism.’

Then he turned away and looked out the car window again… lost in his thoughts.   He was finished. The conversation was over.

I said quietly: ‘Yes buddy … I know… It’s so true …’

My boy has not talked too much about autism of late since we explained his diagnosis to him a few months ago. This talk in the car was an exception. It was just the tiniest of glimpses for me into my own child’s personal journey towards self acceptance. No mean feat given the many roadblocks he faces on a daily basis.

What a privilege it was that I got to be there, sitting beside him, the one to witness such a moment.

Be nice to the autism. My autism.

I hear you Kiddo. I hear you.

The A Word Talk.

I am trying something new today. I am writing this blog post on my iPad. Also I am sitting in my lounge room watching the final flakes of snow melt away as my life returns to normal after five days of snow silliness. For my little family of Aussie sand-gropers snow is a new thing too. I have to say the snow interruption to our regular routine was magical . A true winter wonderland in our new home town in the USA.
Then something else happened over our snow break. Hubby talked to our son about his autism diagnosis.
Just let me fill you in on the back story first. About 3 months ago my hubby and I were faced with the realization that it really was time to talk to Kiddo about autism. He is 6 years old. For a whole host of reasons we just knew it was time. I had also received some encouragement from a fellow autism mama who is a strong believer in self advocacy. Which I am too- but sometimes believing things in theory are easier than making them a reality.
I knew what to say in theory… but saying it out loud… to the little human I care about so profoundly was making me feel… wobbly.
So I did my research. Then I did some more reading. Then I read a few more books. Asked around. Talked to hubby some more. Got some more books out of the library. Lots of good ones. But they were not … perfect.
The main thing tripping me (and hubby) up about the books I looked at was that all of the ones I read addressed the ‘sensory defensiveness’ or aversions to touch, hugs, loud noises, smells etc that some (maybe even many) autistic people experience. My son does not. He LOVES hugs. Loud noises are not a big issue for him. He is all about the rough and tumble of play. I refer to him sometimes as my mover and shaker. There is a name for my Kiddo in this regard- he is a ‘sensory seeker.’ He loves being around people. He loves his peers. He loves excitement, he has no problem trying new things, and is a bit of a thrill seeker. Also my son does not have Aspergers – which some of the books I really liked referred to. I was afraid this might be confusing to him for a first introduction.
So – no surprises really that I couldn’t find the perfect book on autism just for him. The plan in my mind was to write my own story just for my Kiddo. It did not happen. The conversation was raised by Kiddo before I could weave my own Social Story magic!
Given all the thought and effort I put into the process it was a nice piece of irony that Hubby was the one who ended up having the first talk. This is the re-cap on their conversation…
Kiddo asked Daddy at bedtime why he had Mrs G (one of his aides/assistants in the classroom at school) helping him and the other boys and girls did not. Daddy told him it was because he had autism. He told Kiddo that because he had autism that meant he was really good at some things that other kids were not so good at – like riding his scooter at the skatepark. But having autism also meant that some things were harder for him, that he had to work hard to learn those things, so he had Mrs G to help him learn. Daddy said it would not be forever – just for a while – and then when Kiddo was older he wouldn’t need an aide anymore. Kiddo listened intently. Then he said: ‘But I don’t want to have autism. I just want to be like the other boys and girls. ‘

After three months of planning when and how to explain my son’s diagnosis to him- it was done and I wasn’t even there for it. But it happened. I was somewhat relieved, and I was choked up by my son’s response. I know there will be more conversations, but that was the first.
It made me think that over the years, in many ways, things have become easier, but then in other ways … not so much…. Anyone else feel that way?

Early Intervention: a reflection

‘That’s INTENSE!’

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.