Guest Blogger – Amber -Functional Chaos

 

Focus on Families
My last guest blogger for the month is the lovely Amber, sharing her story on her journey so far with her son and his ASD diagnosis. It will resonate with any parent who has gone through the process and her message is loud and clear. Follow your instincts! This amazing lady was kind enough to tell her story and I know I am not the only one who would say she is doing an wonderful job!!
SLXLM

 

I had just turned 19, when Jayden was born in August 2008, he was a prefect and happy little boy. I left his father, just before he was one and I moved back home to live with my family in Lismore.

It was a change, for both of us. All developmentally was going good until he was around 18months. When I started to notice some strange behaviours. He would line up toy trains, cars, pencils/crayons anything really he could get his hands on. I then noticed the how over sensitive he was to sound, he would scream if music was on and would cover his ears. As he got older more and more behaviours started. Changes in routine, crying all the time, gagging on foods like mash potato and the OCD type behaviour when he saw a truck/bus.

And when I told our GP, who referred us to a public paediatrician. She told me there was nothing going on and that I needed to start to discipline him. He was 2 years old, he couldn’t really tell me what was wrong and obviously frustrated and I was being told to discipline my child. This was the 1st time it was suggested I do a Triple P course.

I did that course, but still things weren’t quite right. And no-one was listening. My GP was great and kept sending us to different places to see what was going on. In his first 3 years of life, he had blood tests, x-rays, hearing and eye tests. And nothing came back with anything.

The more the behaviours continued the more concerned I was getting and I started to research more and more online. Still being told I was nuts. And I was starting to believe it. During this time, with everything that was going on, I needed some time out. So I did some study in early child hood. This also helped me realise that what was happening in our lives wasn’t normal behaviours from him for his age. This triggered a need for more information about the early years, education and community services.

In 2012, I moved to the Gold Coast, we started at a new Kindy and that is when everything just went wrong in so many ways.

Hitting, bitting, throwing furniture, kicking holes in walls, refusing to eat, playing with his poo. I was pregnant with #2 and at all my appointments I got the ‘if he is hurting you, you can leave’ talk from the midwives. When I explained that it was my then 3.5yr old, they were astounded. I saw the Child health nurse, Karen, at YHES house, I was tired of all the behaviours and again the triple P program was suggested. Karen also referred us to CDABS (Child Development and Behavioural Specialist Centre at Bundall). Well a whole lot of crap that was. They again told me I had to do a few ‘short courses’ through them before Jayden would be put on the wait list. By this time, I had a newborn, who I had to shield from all this behaviour. Jayden was 4 when Mateo was born.

SLXLM

 

When Jayden finally got an appointment, he was 4.5yrs old. And after 2 appointments, where all they did was do basic health checks, and referred us to the PCIP (Parent Child Interactive Program at Griffith Uni). This was good. This seemed to help, but after the first 4 appointments Jayden had clicked on that if he was good he would get a reward. And no matter how much we pushed him, he didn’t budge, as he knew he would get that bloody reward. They also told me that there was nothing going on and Jayden just needed some stricter rules. We were eventually kicked out of CDABS as he had reached an age, 5. Where they apparently couldn’t help us and sent us on our merry way.

It was at this stage that I just gave up. I was tired of being called crazy, and basically being told that I was a crap parent and to do a better job. This sent me spiralling. With little support from the medical world and being told I needed to put more rules in place, I was diagnosed with PND. I gave up. I had listened to all the medical professionals tell me nothing was wrong. I believed them. This was a dark time for our family. It almost resulted in separation from my partner. I was not me. Jayden wasn’t coping. My partner wasn’t coping. And I had another little person to also care for.

It wasn’t until we started school in 2014, I started to realise, no I was right. Something was going on and something needed to change. He was not coping with Prep at all. And I was getting no support from the school. Its just a transition period they said. He would scream murder in the mornings, wouldn’t put on his school uniform, socks hurt his legs. He wouldn’t get out of the car. He even ran away from school one morning because he didn’t want to go. In prep he had 8 quiet room days, were their behaviour is so bad they exclude them to this room. Jayden would scream during transitions, iPad time was a night mare and anything that required him outside was done with screaming and yelling at his teacher. She was good. She tried to help as much as possible. Tears daily from both Jayden and I and by September I couldn’t do it any longer. I got a pamphlet from someone, and it was for the Benevolent Society. I was at my end, I thought what can they do, all they can say is No we cant help.

I made an appointment with the parent connect worker. She was amazing. Listened to everything I was telling her. Even reading some of the reports from various ‘specialists’. She made my day. She said they can help with seeing a private paediatrician. I was over the moon, it was just the initial cost that was stopping us from going private as at the time my partner was still an apprentice.

Dr Wilson at the Leading Steps Centre at Pindara was amazing. We had a 1hr appointment with him. But in this 1st appointment he said, ‘I’ve read the files from previous doctors, school and kindy reports and Jayden has typical Asperger’s.’ Wow! A few words to confirm what I already had believed. What explained why he had all these little things about him that were different. Why he reacted differently to different situations and didn’t cope with what seemed to be everyday activities.

He referred us to a psychologist for confirmation on diagnosis and developed with us on his 2nd appointment a 2 year action plan on how we were going to help Jayden.

We started with the psychologist straight away. She was an amazing source of information and helped not only Jayden but myself. We also started with Occupational Therapy under the instruction of the paediatrician and psychologist. Grow on Kids have been amazing with support over the past 2 years.

Still even with this diagnosis and a confirmation letter (diagnosed ASD and SPD) we had hostility from the school. Refusing to accept this and give Jayden help.

It was in late December in 2014, after many months of watching a dear friend with her son, same age/diagnosis, struggle like us at school and her decision to start natural therapies that I watched for over 6months that I started to investigate and use Essential Oils. I was so sceptical. But he smelled nice.

I started to use the oils especially designed for focus and concentration. And they helped. At first I thought it was a coincidence, but then when I discussed it with our paediatrician, he did agree that sometimes they can work. And he was all for us trying natural before heading down the route of medications. We then started to introduce an emotional oil, and again less meltdowns. So we decided to try it for school. And they started to see an improvement on the days he wore his oils. Be sceptical all you want. They were working. And we had little daily wins. Sure he still had meltdowns with clothing and played with his faeces, but it was helping.

In 2015, Jayden was verified ASD with the department of education, meaning he was able to access funding for additional help with in the class room. This took me for ever to fight for at school. They just wouldn’t budge and kept suggesting that its all behavioural and didn’t use his funding until I made an appointment in May with the QLD Education Area Manager. From them on they provided little help, but just enough so I wouldn’t be in the office everyday.

During this time, I had also enrolled into a Diploma of Community Services, under advice that I needed something of my own, that didn’t include my children. The psychologist didn’t suggest study, in fact she wanted me to join a craft/sewing group. She was surprised when I told her.

Jayden had an amazing yr 1 teacher. She understood him and accepted his differences and helped include him in the classroom, even thought she wasn’t getting much support from the SEP co-ordinator and they deputy. She was also so supportive with our essential oils, and included them into her classroom. She also noticed differences with him. An IEP was finally arranged in June and we had a program to follow that included OT and psychologist appointments.

By the end of the year nothing with school had changed. It was still a hassle getting him to school and to do activities as the transitions weren’t going well. So we made the hardest decision at the time, to CHANGE SCHOOLS.

This year we changed schools. It has been an amazing improvement, they have been working with our OT and he had his psychologist to support him emotionally with the big changes as well as using his oils for sleep. You know what the best bit is? That Jayden was like a completely different child now.

With the help and support of amazing OT, Psychologist and teachers at his new school, now he is in yr 2, we are finally working towards a more socially independent child. Sure he still requires help, but as he does we are easily passing those bridges. He is doing scouts and loving it. I think this has been so great for him socially in the past 2 years to actually put his learning from the OT and Psychologist into action, where he has made friends with kids from all over our area and is learning to be a leader.

Things haven’t always been great. I have learnt a lot, Jayden and I have both grown. Our family has grown to us now having 3 beautiful boys. I have graduated my course and now am a teacher aid in a special school, where I am learning more and more each day. Jayden is loving his new school and coping so well with everything and all the changes he has had this year. Also with a reduction in meltdowns we are able to do all sorts of things now. I know being a parent is hard. Having a child with extra needs is hard. But you adapt to what you have been given and make the best of what you can. If we can go 1 week with out a meltdown that is a massive win for us.
The only 2 bits of advice I give people who are starting this journey, is trust yourself. If you aren’t getting what you need, seek help else where. When I tell people my story they are amazed that I persisted and often tell me that they would have given up along time ago. And the last thing I tell them is, its ok to have time out. To put your children to bed early and scream in the pillow or have a long shower. Making sure your ok is important too. And if your ok, everything else will be in time.

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