My son Kaelan is 14 years old. He has autism, acquired brain injury, depression and anxiety. He was not diagnosed straight away. While he was at Kinder we realised that there was something wrong. He had an assessment and after half an hour of watching him it was decided that there was northing wrong with him. Unfortunately he began school without any early intervention and no aide time at school. This was a tough year for us, he did not last within the mainstream school setting.
In his first year at school, he was unaided, absconded from school, running across busy roads, self harmed and soiling himself. He had very little language and no social skills. Thankfully, the school supported us to have another assessment done, this time he was diagnosed as having an acquired brain injury and autism. After this diagnosis I was given three brochures which didn't tell me much at all. All I knew is that I had to something to support my son and so I set out to find out all I could about how I could get him the support he needed.
After the diagnosis my son attended an autism special school. At this school, support was put into place as his needs were identified. Our life at home was hell, our family was being torn about, my son had been suspended numerous times and kicked off school buses because of his behaviour. We had a long list of places that he was excluded from participating in or attending. He has been on medication since he was six for depression and anxiety.
His experience at the autism school and the supports that they put in place as well as the other support that I sought out helped him grow in confidence and develop the skills to make a decision about where he wanted to go to secondary school. After seven years at the school of autism, my son now attends a mainstream school and has an aide who works with him in various classrooms. He is assisted with writing notes while listening as he finds this difficult. The school have carefully mapped out his lock access, timetable, other students and contact people.
As a family we have supported the school by providing information for teachers about our son, what is important to him, how he can be best supported and what is important to him (see example below). This has been something that I have developed as a way of informing staff working with him about our son. Ensuring that our child has a Disability Inclusion Support Plan, and Individual Learning Plan and behaviour management plan and that our family is involved in the development of these is very important to us.
While there have been negative experiences with accessing services, there have also been a lot of positive experiences in us finding services to support our son. Communication is the key when supporting your kids. Especially with the school! My son used a communications book which went from school to home. This book would tell us about the day, any issues, notices and behaviours. When he got too old for this means of communication to be effective, because he would tear out the pages he didn't want us to see, we moved to communicating via email. I have open communication with my boy's school, teachers and integration coordinators.
If I could give three pieces of advice to families with children with special needs I would say:
- Don't think you can manage everything on your own. Don't feel ashamed if you have to ask for help or tell people that things are not working or that you are not coping!
- Keep your sense of humour.
- Ensure that you take time out for yourself. Sometimes we try to take everything on and think we can manage, but we need to be realistic and look after our own well being. Use whatever resources or information you have to ensure that the right supports are in place for your children and family.
What people like and admire about me:
- Am funny in a strange way sometimes.
- Have a strong sense of justice.
- An very clever with football stuff.
- Try hard.
- Even though I don't like trying new things, sometime I will have a go.
- Barrack for North Melbourne like my Dad and my sister.
- Have a sense of humour
- Am fun to play with.
- Am honest and loyal.
- Have a depth of understanding into what it is like to have a disability that makes it harder to do things, but I continue to try.
- Like to challenge myself.
- Like Harry Potter books.
- Am a really good swimmer.
- Can kick awesome goals.
How Best to Support me:
- Remember I don't like talking in front of groups. It takes time.
- Get to know me by talking to me about some of my interests.
- I sometimes need a safe place to go if I need some time to think or calm down.
- Handwriting is hard for me and I write slowly and may need extra time.
- I like to know what is happening next so timetables or schedules help.
- I need to know when an activity is going to end, so a reminder is helpful. I need clear instructions.
- I get upset if I get anxious or embarrassed and feel people are laughing at me.
- Understand that I find it hard to express how I am feeling sometimes.
- I get anxious trying new things and meeting new people.
- I feel embarrassed if people stare at me. Please be aware of that.
What is important to me:
- North Melbourne football club
- Football, basketball, soccer, fishing and camping
- Being able to play my X-Box games
- Playing on my computer
- Watching TV shows I like
- Personal training (I am training 2-3 times per week)
- Improving my guitar skills. I am thinking of learning bass.
- My family, I have a big family. Sometimes they are annoying
- Akya (our dog)
- Knowing I can get help when I need it
- Having people remember that sometimes I need help to organise myself and remembering things. You might have told me last week, but sometimes I need reminding.
- Knowing that people listen to me when I am trying to explain something and not feeling like I am being judged.
- Being heard. I don't like feeling like I am not being listened to.
- My culture - I am proud of being Aboriginal.
- I really enjoy being myself, I am modest and do not like ego or show offs.
(Author unknown, Koorie Kids with Special Needs VAEAI Magazine, Issue One, 2015)