A 2022 Summary and Request For Help, Please?
Started really well, actually. Hayley started High School. That’s right, Our baby started Year 7. She was loving it too, until she wasn’t. Background story time…
We have suspected for a long time that Hayley was on the spectrum (Autism Spectrum Disorder – ASD) but received no help or support on the subject. As her current psychologist put it “Another girl falling through the cracks.”
It seems that if a boy is seen stacking things in neat, logical rows for no real reason then the alarm bells go off and he needs to be checked for autism. If a girl does it the she is neat and tidy and will make someone a great wife when she gets older. I’m a middle aged, heterosexual male and I’m still slapping my head and screaming WTF?
A lot of her issues were just put down to being a shy kid who didn’t talk much, or at all with most people. Some advice for everyone out there who does have contact with a shy kid, all you need to say is “Are you going to talk to me today?” as part of your greeting. It is always incredibly helpful. It is just like telling an angry person to calm down or a depressed person to cheer up or someone on death-row to just ignore the electrical currents. For all those who don’t get sarcasm, please ignore the first half of this paragraph and just DON’T say “Are you going to talk to me today?” as part of your greeting.
When these things don’t get the help and support as needed when younger and the parents attempts get interrupted by cancer hitting the little girl (please check multiple earlier blogs). The priority moves to her survival instead of whether or not she has autism and/or will speak to people. During Hayley’s 18 months of treatment, her head oncologist never heard speak once. The nurses got to hear her though. I guess shyness goes away when screaming in pain.
Move forward a couple of years and some research by my very patient wife Leia and we find a psychologist who specialises in a thing called Selective Mutism and a year away from high school Leia gets Hayley put on the waiting list to see this person with the hope of getting thing sorted before starting high school and all the added challenges that high school could potentially bring. Leia was so right but sadly, Hayley was on that waiting list for 18 months before we found a second person in the Sunshine Coast that also specialised in Selective Mutism. November 2022 we finally started to get the help we’d been looking for, nearly 2 years after the initial waiting started. But the damage of 2022 means there’s a lot of recovery required before the treatment can even start.
Damage you ask? Not far into the start of her first year Hayley receives a text message from someone in her group that everybody hates her. Nice right? We moved through that over time and thought stuff was okay when the friendship group that Hayley was part of decided to vote her out of the group and if anyone in the group had anything to do with Hayley then they were out too. Some of these girls were Hayley’s, alleged, best friends. I guess it’s easier to bully the ones that don’t speak up. That’s when Hayley’s school attendance started to drop.
I had meetings and phone conversations and email exchanges with the school principal, junior school vice principal, year level coordinator, student welfare person and others and the school was not willing to help in any way. Nothing. Even when they said they’d do something they still didn’t. There is enough angry information in me to fill in 2 – 3 more blogs this size, just on these dealings with the school but I need to stick to the point. As well as I can anyway.
Back in 2016 when Hayley was about to start radiation therapy, we were told that they could almost guarantee that by the time Hayley is a teenager she would need some sort of hormone replacement treatment but they couldn’t tell what would be affected. Jump to 2022 and Hayley turned 13 years old. So many extra tests are suddenly being ordered and she’s back in hospital for a more than 6 hour long test with hourly blood tests. It was discovered that her thyroid isn’t working properly and that she is producing no growth hormone. The growth hormone is more than just whether on not she is short or tall. It is muscle and bone development as well as other internal organs. The potential, future health risks are too much. The thyroid treatment started straight away with a tablet every morning. Thirty minutes before food or 2 hours before anything with dairy. A little inconvenient but not terrible. The growth hormone is a needle in her arm or leg 6 days out of 7. She chose to have Saturdays off. Seems fairly simple but it highlighted something for us and now Hayley has officially been diagnosed with PTSD. This year had brought up so much for her that even at her latest scans to make sure the cancer hadn’t come back (which it hasn’t), we had get have Hayley sedated in order to get the cannula inserted so that they could draw blood and inject the contrast for the MRI. In over 6 years of treatment including so many needles and chemos and painkilling drugs, etc, etc, etc, we had never, ever had to sedate her before.
Through our own research (again) and now, strongly recommended by her GP, psychologist, paediatrician and I think some other expert (sorry, there’s just so many new people in our world this year) that we should get an Assistance Dog for Hayley to help with her anxiety and her PTSD and to a lesser degree but also importantly, her ASD. Still not officially diagnosed but pretty much agreed on while they go through the official procedures.
This is the Please Help bit I mentioned at the top. This bit might sound a bit sooky and whiny and I apologise if it does but this is a list of actual events as to why I’’m asking. Our landlord said that we couldn’t have a dog, regardless of our reasoning. We said that we would probably need to find somewhere that would allow a dog. A few days later we received the letter of eviction at the end of the lease. Ten(ish) rental applications later we have found somewhere that will allow a dog. It’s only $140 per week more than we were paying which was $150 per week more than where we were 1 year ago. So we have paid the bond and 2 weeks rent in advance.
We have also changed Hayley’s school. Starting next year she will be going to a private school with fees I am not willing to disclose right now but it is a lot more that we were paying. But as I said to the previous school’s principal during our last conversation. I have seen and heard evidence that this new school ACTUALLY does what your website SAYS you do. So it will be worth every cent, as soon as we can find them. The cents that is.
To get an Assistance Dog, we need to buy the dog and then get the appropriate training. The pups we are looking at we have seen for anything from $4,000-$5,500 plus the training which will also add up as it is ongoing. We are able to take care of this ourselves, eventually, but want to get Hayley the assistance she needs now. She no longer sleeps in her own room but on a mattress on our bedroom floor as she needs us close. I suppose just like the nights in the hospital. We also don’t want to sedate her again and want the dog to be certified to be allowed in the hospital with her to help with her anxiety. This is why I am setting up this Go Fund Me page. I know so many have helped us so much already and I am willing to treat any donations of $20 or over as a loan with a promise to get it back to you before the end of 2023. Just let me know in a private message if you want that. I am asking for $5,000 because with all the fees, we would loose some of your donation and we would really like to have at least $4,500 to cover the cost of the dog and maybe some of the training.
If you can I will be eternally grateful. If you can’t, that’s cool too. We all have had so much asked of us lately and I wouldn’t ask if it wasn’t for my little girl. Thank you.
Blog Daddy Of 4 
Dear Andrew and family
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div>Wishing you all a safe and much better 2023! Thank you for the update