Day 29. Autism Awareness month … one day to go!
My brother James is having a few days with us this week. He’s staying with his family at Mum and Dad’s but he’s having the days with me. The boys were very excited to have “Big Jimmy” (who is incidentally not big at all despite his 6 foot 4 stature – but the descriptor sets him apart from my own “Little Jimmy”)!! We have had such a lovely day together.
We started the day in the assembly hall at school with the boys. We arrived just as the bell went so most of the kids were seated in the hall already. This is about the only way my James can tolerate the hall. Tom was concerned because he wasn’t sitting with his class and struggled to cope sitting with us. His anxiety is of concern at times. He was happy though once I took him over to his teacher at the conclusion of assembly.
My brother James and I then went to have a chat with the Learning Support Teacher who is a lovely, practical and straight shooting woman – my kind of gal! It was decided that we’ll leave James off medication for at least this week and that she would do regular observations of him during this time. We are trying to work out whether it is ADHD like behaviour or anxiety that drives his ‘high as a kite’ behaviour. It will be really useful for me and for James’ doctor to have this feedback from them. As ever, I am so appreciative of the school’s efforts to support James and us as a family. They really are wonderful!
“Big Jimmy” and I then ventured out together chatting all the while. We had a big chat about the expenses associated with raising children with Autism. There are a lot of ongoing costs for a family with a child with autism. Every time we see a speech therapist we are approximately $35 out of pocket (we have private medical insurance). Occupational Therapy is similar. Trips to the Psychiatrist have a gap cost of around $60-$80 depending on your specific doctor’s rates. Many doctors request a WISC (Weschler Intelligence Scale for Children) test which costs approximately $800, a speech language assessment which costs approximately $100 out of pocket and an Occupational Therapy review which costs about $200. It’s clear to see how the costs add up.
James’ previous medication was costing us around $300 a month as it is not covered by the PBS. Even the medications that are covered by the PBS cost around $30-$60 a month depending on the drug. Multivitamins, Omega 3s, Vitamin D, Probiotics and epsom salts are all recommended to assist with general health and well being. These probably cost our family about $200 a month.
It is a costly business but I firmly believe that all of these interventions are worth every cent that is spent on them. All this input makes an enormous difference to the long term trajectory for our children. If you add it all up though, with both boys we are probably approximately expend $400-$500 a month on autism related expenses and it was much more before we stopped James’ medication. Obviously the financial impact of this on families in huge and it is life long.
So after a lovely day together chatting about all manner of topics, “Big Jimmy” and I took the boys around to Mum and Dad’s after school so they could have a play with their cousins. My youngest sister “JoJo” also came around. I get so much joy out of watching these cousins play and seeing the obvious love between them. My boys really adore their cousins. James read books to baby Eve, Tom and James both requested cuddles with her, they happily played Duck, Duck, Goose and What’s the time Mr Wolf? with their cousins and derived so much pleasure out of it. I am so grateful that the boys have the opportunity to enjoy and love their cousins. My cousins were a huge part of my childhood and were my first real childhood mates. It’s just beautiful watching my boys with all their challenges, enjoy this as much as I did as a child.
I always feel for Tom. When he was born James was going through a really tough patch and he has had to sit back whilst we have managed meltdowns and challenging behaviour. He has had to cut short playdates, birthdays and fun family days out due to James’ outbursts. James takes up a lot of space and draws people’s attention, and Tom has had to accept this. I think he is amazing. He is a fantastic brother and he absolutely idolises James. To this day it is Tom that is best at snapping James out of a meltdown, usually through humour and antics. Tom has his own battles with anxiety yet he is always sensitive to James’ needs. I am really proud of Tom because in many, many ways his road to date has been more challenging than James’ and he has managed it with such grace for one so young.
As I put the boys to bed tonight, Tom said to me, “I love you, Mum. I really love you a lot!” and James said, “I love you lots, Mum. I love you to Granny and GrandBob’s, all the way to Woorim, then to Aunty Geddy’s and all the way back here! That’s a lot, Mum!” I love them a lot too. I love everything about the two of them, even the challenging parts. These two little boys inspire me to become a better person, a better mother and a better wife. They are two of the most remarkable little people I’ve ever met – and yes I know I’m biased – but they each have their own battles to wage and they do so bravely and with humour. I am so very proud of them both.