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Jaxon (my star)

“I think every mother has huge aspirations for their children, and when I found out that I was pregnant it was no different. Coming from a top level sporting background I had big goals for my child, he was going to be a star.

Jaxon was born in Valencia, Spain during the America’s cup and he grew up with many other babies involved with the Americas cup. I noticed early on that he was not achieving any of the milestones the other babies were, he never reached for toys, babbled, cried or made eye contact. He also had a great deal of difficulty breathing, drinking from a bottle and learning to eat, so I had him at the doctors constantly and basically got told I was being dramatic as it was my first child.

Jaxon continued to be a quiet baby, and by the time we moved back to New Zealand when he was 18 months old he was still not communicating at all, he smiled a lot but didn’t make much eye contact, nor did he seem to understand anything we said, he wasn’t interested in interacting with us very much but was content to push a truck up and down the hallways for three hours at a time.

He ended up in hospital shortly after arriving back in New Zealand with pneumonia and finally one of the doctors at Starship indicated that they thought Jaxon might have some other issues going on so he was referred to an ear, nose and throat specialist. He underwent a huge list of tests and they discovered he had a floppy windpipe/tracheamalacia. This explained the difficulties with breathing, however they were not satisfied that this was the only problem and referred him to another paediatrician on the North Shore.

The paediatrician assessed Jaxon and at two and a half he was diagnosed with severe developmental dyspraxia (verbal, gross and fine motor). This explained the lack of development in holding and playing with toys and his lack of speech as by this stage he was still non-verbal.

As a bit more time went by we noticed more and more that Jaxon did not do anything the same as his peers at day-care and needed far more support in everyday activities than the other children. The only activities that Jaxon was interested in was pushing a truck up and down the deck at home or day-care for most of the day and lining up his matchbox cars. If he couldn’t do these activities or if anyone disrupted him it would cause a huge uncontrollable meltdown (note: a meltdown is far different to a tantrum), these meltdowns were, and still can be very dangerous to those in the vicinity, as he gets very aggressive. Adult support was required for everything, verbal, visual and sometimes even physical prompts were required to complete even the smallest of tasks. He usually didn’t respond and often appeared to stare into space, he had no friends and would usually hit or kick anyone who came into his space. We noticed that everything had to be done in certain orders or a certain way to prevent meltdowns and it felt like it had become a huge effort just to survive the day.

To be honest, I thought I was going crazy and I couldn’t understand why my parenting techniques were achieving nothing. I became severely sleep deprived, sometimes not being able to get him to sleep until after midnight, only to decide he was ready to tackle the next day by 4am! Night after night this was exhausting.

I got used to my life revolving around preventing meltdowns, and it still does, we always have to make sure that this doesn’t suddenly change and spend a tremendous amount of time explaining what will happen next, what will happen that day, the next day, next week, what is for dinner, were we are going, and we found whenever he had to go from one task to another this would trigger a meltdown. Finally, at three and a half he was diagnosed with Autism Spectrum Disorder. Initially, this was a huge shock and I felt like all my dreams for my son had just flown out the window.

I spent the next few months in what I would say was a grieving process and it felt like my life was over. I felt like I had been handed a bad hand, I didn’t know where to go for help or why this had happened to me. These feelings were not helped by hearing things from bystanders on a daily basis, people would (and still do) tell me that he just needed some discipline, he was a naughty boy, I should control my child, etc. People were very quick to judge, but no one would ask if I needed help, and doctors seemed to forever tell me all the things he would never achieve.

I don’t know what it was but after about six months of feeling just plain awful, something in my mind snapped and I changed my attitude towards the lives we had been given and we started on our new journey. We saw up to seven therapists a week, occupational therapists, speech language therapists, physiotherapists, nutritionists, psychologists. We tried sports, we did soccer, dancing, gymnastics, and repeatedly got asked to leave, but we never gave up. We persisted with sports and after a further diagnosis of ADHD at five years old and being put on Ritalin, Jaxon has been able to participate in a range of things, BMX racing (after being told he may never ride a bike), rugby, gymnastics, swimming, athletics and riding for the disabled. He is one amazing young man, and he makes me proud every single day.

I have two other children, and seeing them grow up and develop makes me realise just how difficult life was for Jaxon. We are all now used to following pretty strict routines, making sure we don’t change things without prior notice, answering a million questions about his topics of interest, being very aware of what we say as everything is taken literally. We realise that people who see a snapshot of our lives may not fully understand it, but these things don’t get to us anymore. We still have days where we have huge meltdowns to deal with, but I think the attitude you have towards your children really reflects on your, and their, ability to get through the hard time.

We have truly been blessed with the gift of Jaxon, we are constantly pushing him to his limits and putting him out of his comfort zone in order to give him the skills he needs to get through life, he has shown us a side of life we may have never appreciated otherwise and he really is an inspiration to us.

I believe the hardest part of our journey is probably that Jaxon’s disabilities are not immediately obvious and this is sometimes hard for others to understand. Although he isn’t in a wheelchair or have an illness that is easily recognised, his disabilities are very real and every single day is difficult for him, for his family, his teachers and his friends.

Jaxon is such an inspiration to me, my family and my friends (and also a lot of people we have never met!), and we feel driven to help other families going through it, to help raise awareness, and to change peoples views on these children so we can make their lives easier. I would never change Jaxon, and his disabilities to him, and us who we are today, but if there’s a way that we can find a cause so we can better understand then we will do everything we can to help find one!”

– Tash, Jaxon’s mum

Every year, one in four Kiwi kids will experience a significant mental health issue.

We are proud to support research into mental health. Last year, Professor Sally Merry was appointed as the Cure Kids Chair in Child and Adolescent Mental Health. Professor Merry is a qualified psychiatrist, leading child and adolescent mental health researcher and international leader in the field of e-therapy. Professor Merry has a specific interest in anxiety disorders, teenage depression and early intervention.

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