Josh

josh's Story…

In February 2003 our beautiful son, Joshua was born.  In the birthing suite, we can both remember holding him close and looking into his eyes and saying, “Welcome to the World Joshua”.

For the next year or so we made our Josh feel loved, warm and safe.  He loved to look into his Mum’s eyes.  We did everything that a parent would do.  He was our first child, we wanted to help him make sense of the world around him.

What we didn’t know was that Joshua and the world didn’t really get along.  It was the little things at first, refusing to eat from 6 months of age, the words that he forgot, the avoiding eye contact, not responding to his name when other family members came to visit, the hand flapping, obsession with trains & wheels, lining up of toy cars and being capable of running in a circle for 5 hours a day.  Everyone kept telling us “it’s just a phase he is going through” or “I was a late talker too”, doctors and family clinic nurses never asked the right questions.

After our daughter, Georgia was born, life was really difficult, professionals purely wanted to blame post-natal depression and were not really interested in what our problems really were.  Like our 2-year-old son doesn’t know how to ask for a drink, and will bang his head against a wall instead.  Josh still had never slept through the night even once. It started to become obvious to others that Josh wasn’t engaging with the world around him.

Still no-one could bare to tell us what we really needed to hear. We told everyone who would or even wouldn’t listen, that we needed help.  It was then that a Speech Therapist that told us Josh was displaying “autistic tendencies”.

It hit us like a bolt of lightning. We then needed to know for sure.  After the huge assessment process in December 2005 (what a Christmas!) the official diagnosis was confirmed, Josh has AUTISM.

We grieved for the son we thought we would have and worried about growing old and never dying. We had talked about Autism with various professionals from Josh being 9 months of age as we initially had concerns about Autism and the MMR vaccine, (we had Josh vaccinated AFTER his autism diagnosis with the MMR vaccine)!

Then surely with a diagnosis we were at least on the right path to fix our son’s extensive problems, little did we know that we had much more to come.  You see, we were now in the system. A confusing world of allocations, funding, budgets and therapies. It was a nightmare, as if having a child with autism is not enough, the constant fight for help just adds to our already sleepless nights.

Everyone told us that early intervention for Josh was the key. This is supported by research that highlights that the earlier and more intensive that intervention is, the better both the child and family’s prognosis for the future, plus massive savings long term for the rest of society. However, being able to afford and access the therapists was a whole different issue.

We realised that the early intervention window would not be open for long.

Josh was then allocated DSC-funding for therapy with a large generalist provider. They were poor at their service being neither a specialist autism-focused therapy provider, nor having properly trained staff.  During 2006, Josh got next to nothing as far as therapy was concerned.  They even accessed our funding to deal with our complaints about the poor level of service! 

We later took them to the Office of Health Review (now called Heath & Disability Services Complaints Office) and won a 2-year battle to get Joshua’s therapy funding back.

DSC reallocated us to an organisation called ISADD.  Sometimes fate hands you a huge slice of luck – ours was a young fresh-faced therapist, now psychologist, called Larni.  With Larni we then embarked on a hugely, pretty intensive program of home-based interventions.  Larni helped us determine what needed to be done and we worked incredibly hard over the following 2 years to reach every little milestone.  Some things worked and sometimes they didn’t. We went forwards and backwards but never gave up. There was important progress.

In this the era pre-iPads we had to source resources from software programs, print them out, laminate and add Velcro.  We had pictures stuck everywhere so that we could communicate with Josh and start to reinforce positive behaviour, foods he could choose from, activities available and routines.

The time for school then arrived and we knew that things would get even more difficult for a while. We managed to get Josh into a kindy early intervention program at Canning Vale Education Support Centre (CVESC) for 4 half-days a week. It was incredibly difficult to manage Josh’s complex needs, a new baby daughter (Georgia) a full-time small business at home (Jan) and full-time work (Andrew).

We immersed ourselves into school life at CVESC.  However, every day was about new challenges, new opportunities and new milestones.  We had to constantly advocate for Josh and cajole well-meaning staff into trying new strategies to progress Josh.  Much of our direction during this difficult year was set and inspired by Larni.  Larni helped us identify what we needed to do with Josh at home and then helped us ensure that his school complemented this therapy.  She also visited Josh at school to reinforce these messages and help us work out new tasks and strategies that would complement what school were teaching so we were all on the same page.

We then encountered fresh difficulties with Josh’s pre-primary year.  Our home is technically not in the catchment area for CVESC, plus the government drive was to insist on kids attend their mainstream feeder school for the remaining half days at the nearby feeder school, Ranford Primary School.  Constantly ferrying a child with comprehension, communication, behavioural, toileting and eating difficulties seemed like a recipe for disaster.  Not to mention by this point our daughter desperately needed to be able to access some children to play with of her own age.  After many knockbacks, we then wrote to the Director-General of the Education Department to move Josh to the Kenwick Special Needs School as it offered 5 full days per week of schooling.

With a supportive Principal we were all able to continue our focus on Josh and Georgia could attend a pre-kindy in Parkwood as we couldn’t get back to Canning Vale in time.  The focus for Josh at Kenwick school was on communications and life skills.  It was very difficult for our family travelling, managing our daughter needs.  Larni through ISADD continued to provide our family with much needed support.  There were more visits to school from Larni, swimming lessons (the School had a pool) and we felt we were making progress, the recommendation from the school at the end of the year was for Josh to return to CVESC for Year 1.

When Josh was ready for Year 1, he returned to CVESC on a full-time basis as it was still not appropriate for him to enter mainstream education yet.  Larni continued her home-based guidance and support (complemented by School-visits) but we and Josh were ready to step up our home-based therapy to a new level.  He was progressing extremely well and was attempting verbal communications not just using pictures.  We were very much on track.

From Josh being very little we had made a point of a “like it or not” we were going to read books obviously starting with small words and gradually building them.  Through the therapy process Jan even made books with basic pictures and even cut out the junk mail pictures and carefully described the images with basic symbols and words.  Turns out Josh loved this method of learning and we were able to intensify this style of teaching as it was providing him with a great comprehension base to build on.  (Jan was horrified when Larni had her cut the words off the EXPENSIVE flash cards and put Velcro on the back of the word and front of the picture to see if Josh could match the word to the picture! HE COULD! WOW Josh can read!).  So, we continued with the build of the reading and ensured that as many pictures as we could had words attached, as even if he did not understand the words yet at least they are in his head and we can build on the comprehension later were possible.

Josh was still not sleeping well through the night so with Larni came the advent of social stories and Josh learning about when he should go to bed and when he is allowed to get up. 7pm – 5am was as good as we were going to get.  Josh still uses these times even today.  We did manage to convince him later that Friday and Saturdays he can go to bed a bit later as there is no school the next day mind you, but he still gets up at 5am!

Eating was another of the major problems we had to contend with.  Terribly hard area too as Josh has extreme sensitivities in his mouth, not to mention the ritualistic routines we needed to contend with of how food needed to look and be set out.  Again, Larni came to the rescue.  Here we had to deal with assorts of problems with the sensitivities, behaviours and reactions that Josh displayed.  But very gradually he started to accept new foods bit by bit.  Slowly we were able to make a meal and over time Josh has progressed to eating some wonderful meals and is now quite willing to attempt new foods with little issue.  He can go to a restaurant and select items from the menu and requested for ingredients to be left off the plate or burger if he doesn’t want it.

Larni taught us about prompt boundedness, when teaching Josh various techniques how he would assume that another person was always going to be there to do things with or for him.  Josh just could not make decisions about anything, he just did not know how.  From the tiniest things like squeezing a tube of toothpaste on your own to riding a bike without someone else pushing you.  Josh was struggling with the concept that he was able to make his hand work to squeeze the tube  and his feet could power a bike.  As much as we wanted to ensure Josh got what he needed, we also needed different methods to teach very basic concepts that he could not understand by just watching someone else do it.  This also progressed to the numerous steps that are required in areas we would consider to be so basic, like getting dressed.

Josh’s progress from Years 1 to 4 was remarkable.  Josh is a really hard worker at both home and school as he had just grown to know that by doing the work he was making wonderful progress.  At the end of year 4, we embarked on a new campaign to move Josh to the co-located Canning Vale Primary School (CVPS). This was not only difficult as we were still out of boundary but the school was reluctant to accept that they could not teach Josh any more in this zone as he was already way ahead of the other students and their resources were just not meeting his needs. Josh had way outgrown their library of books and they would not teach the class to his higher level.  Many letters to the Education Department resulted in Josh being accepted into CVPS. Consequently, during the first half of year 5 he transitioned across to a mainstream school setting.  In the second half of that year, he moved to a fully mainstream setting. This included attending the year 5 camp in Kalgoorlie for 6 days.  Josh Loved how quiet the classes were.

In year 6 Josh was fortunate to access a teacher who was very driven to see Josh further progress and he did. His graduation from primary school (a real milestone), then meant a move to high school as a mainstream student.

High school means new teachers for every lesson in different classrooms and lots of new students and many more new challenges.  Josh had been well prepared for the whole concept and undertook the task magnificently.  Although we had to constantly (and occasionally still do) remind their disability support unit that Josh is a mainstream student with Education Assistant support in a mainstream setting and not part of their Autism ESC.  Josh has worked hard to move to mainstream and does not want to be in and ESC (sigh – people like labels and to get everyone who has a difference into one zone for their convenience). Being in mainstream, Josh undertakes all core the subjects and has access to all optional subjects and has proven himself worthy of being there.

As with many year 7 students we had to deal with a few bullies who thought Josh an easy target but with our nagging the School has taking the issue very seriously. 

In year 7 Josh was quite on his own at school, so just played ball against a wall, making friends for Josh has eluded him as he has just not known how. 

So, after discussions at the end of year 7 with the school, come year 8 the school got Josh and some other nice kids to start playing some 4 square ball games together during recess and lunch times.  Josh was so happy to have other kids to hang out with.  Josh then started to ask questions about how his sister always has playdates with her friends and how can he get together with his new friends?

High school is completely different to Primary school for knowing how to contact the parents to ask for their permission and kids are much likely to want to make up their own minds. 

So, Jan handwrote some letters for Josh to give to the kids he wanted to hang-out with outside of school hours so the kids could give them to their parents. Mid-year 8 Josh was getting together with a few new friends.

Josh is now in year 9 and we have a whole new struggle on our hands, that is to keep up with Josh’s social calendar. He has some wonderful friends and this is an area we are very happy to be dealing with.

Josh loves movies and this has been a place he has been able to invite his friends to meet him also helping him build these friendships further and giving him some independence, especially when having a burger after the movie giving him an opportunity to chat to his mates.

We are also now considering other areas we did not know we could have to even think about.  Like what options should Josh be selecting for next year as year 9 can determine job opportunities into the future.  Josh loves cooking, media and web page design & animation.  He also wants to go to University or TAFE, as education has been such a huge part of his life.

Larni & ISADD have been a very solid support to our family over the last decade which our family appreciates enormously.

The Journey is not yet over and we continue to face new challenges quite regularly.  Saying that; however, we would not change a thing!  We are proud to bits of Josh and his Autism as this is a part of who he is and always has been and always will be.

- The McLean Family