I just want to start by saying; I do not speak from a place of knowing all the answers but merely from my own life experiences and from working in various educational settings for the last 18 years both in early childhood and primary level education.
Of course we are all human and naturally feel so many emotions when we are given upsetting news about our children. I remember feeling sadness, distress, anger (why my child?), guilt and then the panic set in, ‘how am I going to help my child when I know nothing about Autism?!’
Firstly, I believe the most valuable message I can give is ‘acceptance.’ The quicker you can accept your child’s diagnosis the greater position you are in to support them and the sooner you can begin the very important early intervention that they will need. I would be lying if I said it were easy, I had days that I was at a loss, I just didn’t know how I was going to keep challenging myself to push forward but there were so many rewards and joyous moments along the way that would inspire me to keep going. When you see them reach even the smallest of milestones it gives you so much joy that you know it’s going to be all worth it in the end. Ronan is now a wonderful young man living an amazing life with Autism.
Secondly, one of the most important things that you can do for your child is to remember that ‘action’ is the key. The longer you dwell in the grieving cycle the less time you spend helping your child and giving them every opportunity to live their best life. It has been proven in many studies that early intervention can make a significant difference to long term outcomes for those living with ASD. I only have to look at Ronan’s journey to know that early intervention definitely helped him to be where he is today. I remember sitting up most nights when Ronan was young just researching and educating myself as much as I could so I could better understand him and his needs. Never hesitate to ask questions because knowledge is power. Educating yourself is definitely worth the effort and helps to give you the tools you need for the journey ahead.
Remember it will be a journey and everyone’s will be different because no two ASD children are the same. They have their own personalities just like everyone and what works for one may not work for another. It’s a journey of trying new things, seeing what’s most suited, keeping an open mind to new ideas or strategies and not to be too disheartened if something doesn’t seem to be working straight away. Sometimes it’s a bit of a roller-coaster ride for ASD children with lots of ups and downs; it may appear that they take one step forward but two steps back. That will change with consistency and perseverance and you will see them achieve.
Thirdly, look after your own wellbeing. It’s very common to feel isolated especially when friends and family may not understand Autism and the challenges it presents in your day to day life. You must reach out, you are not alone, there are many parents going through the same emotions and challenges you are. Look into support groups for parents, they are often run through various ASD organisations or sometimes just parents themselves run support groups in your area. It will be the best thing you ever do! To be able to talk to others who understand what you are going through cannot only be comforting but often very resourceful. Many times you will find out information and ideas just by talking to other parents. After 20 years I still have such amazing friends. We have watched each other’s children grow and achieve such wonderful things. However, along the bumpy road we were all there to encourage, to support, to lend a shoulder to cry on or an ear to listen when we wanted to shout from the rooftops about our child’s achievements. I don’t know what I would have done without them. Remember your child needs you so looking after your mental health is vital.
Nothing happens quickly in the modern world. Most services these days, unfortunately, have waiting lists, so the quicker you can make contact with organisations the better. Remember that just six months in a child’s development is a lot and you don’t want to waste that precious time to start early intervention or therapy.
First and foremost I would recommend registering with the NDIS (National Disability Insurance Scheme). This is a bit of a process to go through so the quicker you contact them the better, when you call them they will talk you through what they require. The funding allocated through the NDIS will assist in paying towards therapy and support costs your child will need. Unfortunately, therapies do not come cheaply. Through NDIS you will be allocated a Local Area Co-ordinator who can also assist you in finding supports in your area.
Making contact with Centrelink is also an option. You may be eligible for the Carer’s Allowance which is a fortnightly payment to help assist you with caring for your child.
Tapping into an Autism specific organisation such as Aspect Australia is a great idea. They have many supports, therapists and programs to offer and they can guide you through the steps to take to initiate services. We used Aspect Australia for most of Ronan’s early years and they also helped transition him to mainstream school. Until this day he still has speech therapy through the organisation, so you can see how it can become a long term support throughout the child’s life and into adulthood. There are many organisations out there so finding one that best suits you and your child is important.
It’s very beneficial to have a good Paediatrician throughout your child’s early years. If you are able to find one who specialises in Special Needs/ASD that’s even better. They can give advice on where to access various therapies in your area; such as speech, occupational for motor skills and sensory and behavioural therapies, along with looking after your child’s health.
Early Childhood centres, in particular pre-schools often have lengthy waiting lists, so it’s a good idea to think ahead and put your child’s name down early. When enrolment time comes you don’t have to take the position if you choose not to. Most pre-schools these days accommodate for ASD children, and many run specific programs for them. It is a wonderful way to begin the often difficult challenge of socialising your child. I would recommend doing some research on pre-schools in your area, go and visit and get your child’s name on the list. I have worked in a number of great centres that catered amazingly for ASD children. Of course there are also Autism specific centres in some areas; it’s really dependent on the level of your child’s needs.
If your child has not been diagnosed until school age then looking into the right school setting will be your focus.
The wonderful initiative and implementation of the A-List will be an invaluable resource for all parents of ASD children. To have a one stop shop where you can access everything Autism will be so beneficial and something I could have done with in Ronan’s younger years! To be able to find service providers or a parent support group in your area just by looking in one place will be an amazing tool. Then combine that with all the other educational resources, it will make life so much easier for many families and people on the Spectrum.
Remember, outcomes and challenges for every child will be very different and there will be many changes and adjustments to be made in your life. Above all try and share as many experiences as you can with your child, it will prove to be such an important part of their development. Although the journey you embark on will at times be challenging it will also be one of the most rewarding and special things you will ever do. ASD children and adults are unique and have remarkable abilities and strengths. They have an amazing ability to see the world in a whole different light. Ronan has taught me so much and there have been many moments throughout his life where I have thought to myself ‘if only I could see life more like him!’
