HUGO'S STORY

BLOG #2

Hugo Luke Barrett was diagnosed with Autism Spectrum Disorder in January 2012, aged 2. At time of receiving this official diagnosis, we (his parents) knew this was the likely outcome of his assessments; however it still hit us hard. Although we now had a confirmed reason for all Hugo’s behaviours, our next question was – “where to now?”…

Rewind one year and Hugo was a happy, content and gorgeous one year old boy. He met all the usual milestones – rolled over at five months, sat unaided at eight months, walked at twelve months, yet he did not speak AT ALL. He cooed and giggled as babies do, but not one single word. His eye contact was also very limited and we would only catch a quick glance from him from around six months onwards. We started noticing him staring off into space or at the TV, but never at people. At around 12-18 months he would be so engrossed in his toy cars, trains or books and line them up in symmetrical order and be extremely distressed if someone messed this up. He would notice the door opening and closing more than a person actually walking through the door. He would notice the wheels turning on the car rather than the car or the person driving. With his only brother only 18 months older, it was easy for anyone to see the much bigger gap in developmental progress. He was still a happy and content 18 month old, but in his own little world not letting us in or wanting to be out in our world with us. So we sought advice from our Paediatrician although we knew deep down why Hugo was displaying all these characteristics.

We started out with individual private Speech Therapy and Occupational Therapy, attending 2 sessions each per month as well as the government offered appointments by St Giles and ECIS (which were only 1 per month). This continued for 2 years and we were then recommended ABA Therapy by his private Occupational Therapist to work on his aggressive and violent behaviours.

Fast forward five years and Hugo is STILL a happy and content boy at age seven. The past five years have gone fast and slow. Slow in his progress from being classed as “severely autistic” and completely non-verbal, but fast in the time that it has taken to work out the types of therapy that work for Hugo. Hugo has been participating in ABA Therapy for a bit over three years now as well as still attending private Speech Therapy (fortnightly) and Occupational Therapy (monthly). As we as individual sessions with his OT, he also participates in DIADS with another seven year old boy on the Autism Spectrum working on their socialisation, play and language. This has been a huge help with Hugo’s interaction at school with children his own age. Although Hugo now talks nonstop, a lot of his language is non-functional in that he is reciting movies, TV shows, songs or IPAD apps. This is now considered a form of stimming to help keep him regulated. Whilst it is kind of cute now at age seven, I don’t envisage this being considered “cute” in several years down the track.

Hugo's ABA therapy has covered a whole range of every day hurdles he has faced, from road safety to personal space, hairdressing desensitization to introducing good foods to his diet, from verbs and nouns to handwriting and articulation. ABA for Hugo (and for us) has been a godsend – apart from its HUGE financial burden on our family. We used Hugo’s HCWA funding in just over a year with his intensive OT and Speech program to get him the early intervention he required - Leaving us to financially support his ABA program. We estimate we have spent over $30,000 on his ABA program alone in the last three years (none of which was covered by any type of government funding or rebate system).

Two years ago I was approached by my younger brother who was only 14 at the time, and he told me he wanted to help Hugo and our family. I had no idea what he meant by this and then he explained to me that he wanted to start a charity for Hugo to ensure we wouldn’t have to cut back on any of his therapy hours, and if anything to increase his hours. Dijon and I weren’t 100% sure anything would come of it, but we were so appreciative of such a generous and thoughtful gesture.

Over the next few months we watched as Luke got ambassadors on board, ordered stock and started spreading the word every way he could. Within a year The Lend a Hand to Hugo charity has raised important awareness of Autism around not only Tasmania, but Australia wide. Whilst we are still paying for Hugo’s individual daily ABA therapy sessions, It has assisted us financially and allowed us to increase Hugo’s therapy hours.

With the charity attracting so many supporters we were asked how we would feel if the charity assisted other families struggling with the same financial pressure as we were. We agreed this would be a very thoughtful and supportive gesture, and the right way to go.

With the amount of progress we have seen Hugo make, we wouldn’t change a thing. He attends a mainstream primary school and in grade 2 working somewhat “independently” but with assistance from aids when needed. I strongly believe this is due to the amount of therapy input he has had since being diagnosed almost 6 years ago.

--

Anita and her husband Dijon have this week applied for a program that the NDIS (National Disability Insurance Scheme), a program that Hugo is now eligible to benefit from. This rollout process is available for ages 5+ and means that if the application is successful, Hugo's therapy will be fully covered. If successful, Lend a hand to Hugo will continue our journey to assist one additional family per month, raising awareness and will also look to provide assistance to Hugo in other areas, such as the funding of learning resources and other educational equipment.