A Boy and a Beach

The ABC is running a program called Faceless Portraits www.open.abc.net.au whereby you submit photos of people without showing their faces while still capturing their spirit.

I started trawling through my photos and chose a number of pictures to submit.  This is one of them.

I love it because my son looks at peace in the water.

Calm, still, focused and completely in harmony with the ocean. Just looking at my son in this photo made me feel calmer!

This week I felt a bit down about an under resourced ‘system’, and all the families who struggle both in it and with it. On Monday I watched an autism documentary on TV that presented a point of view (but not anything that represented my view), on Wednesday I read a newspaper article describing a new ‘autism app’ that promised a lot (and I hoped it would be great), and on Friday I read a letter written by an autism mum advocating for better schooling (I wondered if the ‘powers that be’ would act). Some weeks I just feel frustrated and fed up.

Ending the week by looking at these beach photos just lifted my spirit and calmed me down.  Maybe its time to take myself to the beach for a while.

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Father and Son

With Father’s Day coming up next Sunday 2 September in Australia, a good friend invited my hubby to speak at her MOPS (Mothers of Pre-Schoolers) group in South Perth about being a dad. I have heard my husband talk before in various group settings about fathering, and I am always moved and inspired to hear his story.

When our son was diagnosed we both knew less than nothing about autism. I mean really just zero. Then the day arrived when we did need to know. From that moment I started to learn, read and research. I went into ‘action mode’. My husband took longer than me to come to terms with all the changes. Initially I felt annoyed that he had not dedicated himself the way I had done. My hubby did not like going to therapy appointments, he did not like reading books about autism or looking at therapy articles online. He was not impressed at my efforts to engage my son in pretend play with dolls, and told me flat out he would not be doing beading activities under any circumstances! In seems funny now, but there were some tense moments.

Things did ‘click’ into place for my hubby however in his own time, and I am pretty sure it coincided with me ceasing to nag. I gave up feeling ‘ticked off’ that he wasn’t bringing what I could bring to the table, and tried to focus on the good things that he was doing. It was about four months after diagnosis that I noticed my husband had a special talent. He was able to engage our son, and could make him laugh. In autism terms ‘engagement’, also known as ‘joint attention’ or ‘shared attention’, was no mean feat in relation to our son in those early days. I would crawl around on the floor for hours on end after my son trying to get him to ‘see’ me, and I would be lucky to get maybe get one or two quick glances in my direction. My hubby on the other hand was having more success at this than me. Whenever my hubby succeeded in making my son laugh I had a feeling this was a very good thing for my son to be doing! So in a light bulb moment I got my husband to do more ‘engaging’.

Things just seemed to build from there. Whatever my husband was passionate about my son seemed to like too. My hubby was fun, and seemed to genuinely believe that my son was having a great life and would have a great life. My husband prayed for my son at bed times in the most beautiful and gentle way. He would tell our toddler, ‘You will grow up to be man of empathy, you will have a heart for the down trodden in this world and you will be a leader and a man of integrity.’

That was my husband’s contribution to fathering a young child who had some complex needs and challenges relating to the autism diagnosis. He called it ‘the gift of connect’. He spent incalculable number of hours connecting with our child. He also went to his job every day, he had a genuine faith and positivity, and he made my son laugh. So I stopped trying to get him to be me. I was good at accessing therapists, going to all the appointments, reading autism books, researching online, and finding and maximizing all available resources. I had brought what I had to the table, and so had he. Our contributions to raising our child were different but equally significant.

To all the Dad’s I would like to wish you a ‘Happy Father’s Day!’ for next Sunday 2nd September…

To my son’s dad, thank you for all you do for our child. I will be forever grateful xx

 

One description of autism and inclusivity

Inclusivity-n-

The fact or policy of not excluding members or participants on the grounds of gender, race, disability, class, sexuality etc.

Towards the end of 2009 my son was assessed for suitability into an inclusive autism intervention centre called Alexa’s PLAYC (formerly Children’s Toddler School) in San Diego, USA. He started there when he was 23 months old, and stayed for 9 months at which point we returned to Australia. Apart from the autism diagnosis, he was assessed as suitable for this program due to his young age, his problem solving skills and his ability to learn in a group. As parents we agreed to do at least ten hours of therapy a week with our son at home, implementing the strategies taught to us in the parent training.

Alexa’s PLAYC was such a positive experience for our son and our family. The program had a number of classrooms each with 12 children aged 18 months to three years, 4 with/or at risk of autism, and 8 neuro-typical children, all screened to be appropriate peer models and developmentally on track. The children in each class remained fairly consistent, with new students introduced only when a child turned three years old and aged out of the class or if a family moved on. There were also classes for children aged three to six years of age. There were four staff in the classroom, trained in both autism and early child development, and all tertiary qualified. They all rotated duties in the classroom. My son’s ‘case manager’ was also a classroom teacher. She was given time out of the classroom to update my son’s goals and pass on the feedback to my husband and myself. Other highly qualified and experienced staff at the Centre worked to oversee the entry of new students, programming, training and staffing. My son was there for the afternoon session 3.5 hours a day 5 days a week. It was year round, breaking only for Thanksgiving and Christmas.

There was also a two hour a week visit from a classroom teacher to help us with community outings, play dates, and to observe and coach us in the home. In total it was 19.5 hours a week. State funded. No paperwork. I filled in one set of paperwork upon entry, and it was the only set of paperwork I was required to fill in until we exited the Centre. At the Centre the parents of typical children paid centre fees (and did full days), and the regional centre (with State funds) paid the fees for the children with/or at risk of autism (who did half days, either a morning session or an afternoon session). I have attached the link to this program and research results. www.rchsd.org/programsservices/a-z/a-b/alexasplayc/research/index.htm

The value of meaningful and scaffolded interactions and integration with neuro-typical children at this young age was the stand out part of this program. Other strategies were incorporated in such a seamless way. Plus the staff created a fun, stimulating, warm and loving environment. Visual supports, the layout of the classroom, transition supports, turn-taking, reducing prompt levels and so on were embraced by all the children. The parents of the neuro-typical children I found to be understanding and compassionate people. The research also supports that the neuro-typical children were achieving and benefiting from being in this program.

Being able to drop my child off at the centre allowed me to rest. My stress came down knowing my son was getting what he actually needed. I was then able to put in a great effort with him at other times and implement all the strategies in a generalised way. The training was excellent, the goals were clear and measured and updated every five weeks. Areas of focus were ‘autism specific’ with the focus on joint attention, receptive and expressive language, greetings, interactions with peers and adults, imitation skills, play skills, daily living skills and so on. I was still working hard with my son and was tired, but no longer exhausted. My son made steady progress, in some developmental areas he was making month by month gains. I started to say to people ‘I am taking my son to school’ rather than saying ‘I am going to therapy!’ That felt so good! Below is the link to the parent training program used at the centre. www.amazon.com/Teaching-Social-Communication-Children-Autism/dp/1606234404

Each room was set up like a toddler classroom and used incidental teaching, pivotal response training, DIR/Floortime, discrete trial training, PECS, structured teaching and consultative speech and occupational therapy. Interaction with typically developing children was facilitated throughout the day. The Centre set goals for each child, as well as using the curriculum from The Early Start Denver Model. www.amazon.com/Early-Start-Denver-Children-Autism/dp/1606236318

Alexa’s PLAYC worked in collaboration with the research centre CASRC , Rady’s Children Hospital, Compass Family Centre and UCSD, so the research could be directly translated back into the program. www.casrc.org , www.compassfamilycenter.org , autism-center.ucsd.edu

In my experience appropriate inclusion for toddlers and young children with autism is important to an evidence based program and key to addressing best outcomes and best practise. As always, it may not be the right path for every family or every child, but in those early years it was part of my son’s progress, my family’s well being, the other children at risk/or with autism, and the education of the neuro-typical children and their parents.

I would love feedback from anyone who has heard about or been in a program for children aged between 18months and three years, like the one my son experienced? I wonder whether it would be outside the realms of possibility that the WA State government or Australian Federal government could provide and fund such a Centre for toddlers and children (with readily available assessments and placements). Would parents of neuro-typical children be interested in and happy for their children to attend such a Centre? Any thoughts on this topic and inclusivity in general are most welcome!

The Diagnosis is Autism

My hubby asked the question “what’s the next blog topic Kaz?”

I told him I was thinking about something relating to the diagnostic process. The response from him was to draw in a big breath and say “wow-that’s MASSIVE! You may need to make that blog two parts.”

I started to think there really was two parts for me. The first was the external mechanics of stepping into the ‘system’.  There was diagnostic criteria to be met, forms to be filled in, questions to be answered; professional’s to be talked to.

Then there was the internal and personal part.  Guilt, grief, denial, confusion, anger, relief, exhaustion and heart gripping fear.  Often the two parts overlapped.  Interfacing with the ‘system’ to get a diagnosis was as equally challenging to navigate as the emotional minefield.

After months spent watching my son closely and waiting for something to reassure me once and for all that things were fine, I slammed down on the internal alarm button around the time my son was 16 months old.   I saw multiple behaviours and witnessed development that was not ‘typical’.  I did my research online.   I believed in what I had observed, recorded and reflected upon.  Daily living with my child became a little more difficult with each passing week.   It all translated into me being too tortured with worry to spend my time doing anything else but find out what was going on.  By the time my son was 17 months old I could not be convinced that ‘Nothing was Wrong’, or that I was just being ‘Too Anxious’.  I was incapable of being able to stomach the ‘Let’s Just Wait and See’ line either.

One child health nurse, a doctor, a paediatrician, three speech therapists, one developmental psychologist, countless phone calls and a pretty penny later I was holding the ‘Official Piece of Paper’ and had completed the ‘Official Diagnostic Process’ in Perth,  Australia.  Those months of wondering, watching, waiting and worrying were over.  My son was just eighteen months old.  The world came crashing down.  But it did not come to an end.

Fast forward three years, and I am grateful every day I did not delay. I now know that my son is actually one of the lucky ones.  Against the odds, he got a diagnosis in a timely manner.  This led to him getting appropriate intervention, again in a timely manner, in the USA.   My husband and I don’t know exactly what the future holds, but what we do know for sure is that our son’s quality of life and long-term outcomes are, and will continue to be, better as a result of what has happened over the last three years.

What is Autism?

I found the San Diegans I met when I lived there to be a friendly bunch!  I am not sure if it was my Australian accent or having a cute baby boy or both, but I often found myself in friendly banter with different people.  Occasionally an American would say to me ‘oh-you’re from Australia…do you know such and such? They are a friend of mine and they live in Australia.’

It’s a bit like that when someone says ‘my child/nephew/cousin/friend/ has autism’.  You have just directed me to a country as big as Australia, but there is so much diversity within that country that it’s pretty much impossible to just know exactly who they are and what they are like.

Autism spectrum disorders (ASD’s) are a group of related brain-based disorders.  The main symptoms are social differences, communication differences and behavioural differences, also known as the ‘triad of impairment’.  This is evidenced in a multitude of ways, and in varying degrees of severity (a spectrum).  There are different types of autism, known as Autistic Disorder, Asperger’s Syndrome and Pervasive Developmental Disorders-Not Otherwise Specified (PDD-NOS).  The criteria for these conditions are listed in the Diagnostic and Statistical Manual-4th edition (DSM 1V), and fall under an umbrella heading of Pervasive Developmental Disorders.   The cause of ASD’s, in most cases, is not known.

ASD’s can also be associated with other syndromes and health problems like medical conditions, behavioural challenges, emotional and developmental disorders.  For example seizures, nutrition and gastrointestinal disorders, hyperactivity, sleep disturbances, cognitive deficits and anxiety disorders.  Every person is different.

So what do people and adults living with autism say about their condition?  I found listening to what one of the world’s most famous people with autism, Temple Grandin, says to be incredibly insightful.  See the link below.

http://www.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds.html

There is not a single story for people with autism.  Hence the saying ‘when you have met one person with autism, you have met one person with autism.’   

My son is a child first.  His life has been impacted by autism.  Yes, there has been suffering and pain.  There has also been profound joy and loads of love!  My son has challenges in areas that the typically developing child does not have.  He tries very hard to learn the skills needed for language, socialisation and behaviour.  Sometimes progress comes slowly.  The things typically developing children pick up almost instinctually, is actually real work and a real struggle for my child.  However, with the appropriate supports in place he is able to learn and grow and achieve wonderful things.

So when I talk about my boy, I do know him and I know where he lives in this big wide world.   My boy is a bright, funny, active, fun loving, affectionate and adventurous kid.  That’s his personality. That’s him with or without the autism.  He loves jumping on the trampoline, watching the TV show ‘Funniest Home Videos’, going to the beach, having big hugs and riding his scooter at the skate park.  Just like your child. He is loved.

A Whole New Language

I read a flyer yesterday about Dr Andrew Whitehouse giving a public forum in Perth on ‘complementary and alternative therapies’.  It got me thinking about all the therapies I have read about, talked about, learned about, used and seen used with my son, particularly when I lived in the USA.  I still remember the first time someone said ‘ABA’ to me after my son’s diagnosis.  I remember thinking ‘where have I been all my life that after 33 years on the planet I have never heard of this before?!’

Little did I know it was only the beginning of words and acronyms, theories and ideas I had never heard about before.  I have to admit for about a year or so after diagnosis I dived head first into the ocean of tests, tools and treatments.  I read about them and talked to anyone and everyone I could.  I certainly didn’t get to all that is out there, but I did get to a few.

Social Communication, Early Start Denver Model, Hanen training, Millar Method, Sensory Integration, GF/CF foods, incidental teaching, prompt hierarchy, functional behaviour analysis, ABA, AVB, DTT, PRT, DIR/flootime, RDI,  biomedical therapies and specific strategies for feeding, toileting, sleeping, community outings, daily living skills, and social skills.  I heard that therapies should be evidenced based, and I also heard about hyperbaric chambers and chelation therapy.  The testing tools blew my mind also, the WPPSI, Mullen, ADOS, DSM 1V, Vineland, ADI, CARS, and M-CHAT. I had to sort through it all and sort out fact from fiction.  It was the steepest learning curve of my life to say the least.

Then one night during this time my husband was looking around for another pillow after we had gone to bed.  When I asked him what he was doing, he said he was getting another pillow because he needed some extra sensory input!  I laughed so hard I nearly fell out of bed!

It was the first time I had heard him use ‘therapy speak’. That’s the deal with therapy and treatments.  It doesn’t account for your partner making an innocent comment and making you laugh so hard that the stress and pressure just fades away for a little while.  I need to be reminded from time to time that we are all going to get through this, that I love my little family and that me, my hubby and my son are doing the very best we can.