Keeping the faith on this autism journey

DR RADICA MAHASE

For the past eight years I have had the opportunity to interact with many parents and caregivers who are also raising children with special needs.

For me, there is a sense of comfort in knowing that there are other parents/caregivers out there who understand that the autism journey might be a different experience; who might be able to offer words of comfort; who might just show that they understand the challenges. Sometimes just meeting someone who has already dealt with a challenge that we are not dealing with can give a sense of comfort.

As my nephew turned 18 years, and as he entered adulthood, I thought back to the years when he was diagnosed and the road that we have travelled from then until now. I won’t lie, the challenges have been numerous – and they have been the same challenges that most parents are faced with – accessing schools, finding and affording therapy, finding inclusive social settings and society’s negative attitudes and behaviour. I don’t think the challenges will ever go away completely but I do know that a lot of it has been dependent on our attitude and how we approach them. I also know that as the years went by, we have learnt to accept them and deal with them better.

To those parents and caregivers who are now receiving a diagnosis for their children or who are now trying to get their children diagnosed – this is probably the most overwhelming stage. The beginning is the scariest because that is when you really don’t know where to turn for help. That is when you are not sure of what you have to do, what your child needs from you, what you can do to help your child.

This is the time when you really need to reach out to your support system, or find a support system. Find other parents or parents who have special-needs children, NGOs, parents’ network – anyone who can offer some words of comfort. They may not necessarily be able to give you the help you need but just knowing that someone is there to listen and maybe offer advice, can go a long way in helping a parent to maintain a sense of calm and to feel a little bit in control of the situation. Also, remember, you won’t have all the answers, you will feel lost and helpless but a diagnosis is not the end of the world. It is not the end of your child’s life. That beautiful baby that you so happily welcomed into the world, is still your beautiful child.

Believe in your child, even when society says that your child is not "normal" enough – stop expecting your child to "become normal". Too many parents wait for the years to go by with the hope that their child will start to speak, read or write, and so on. They wait for the child to "grow up so the autism can go away" or for their child "to get better." No matter how high functioning or what level autism your child is diagnosed at, your child will continue to have challenges and will need your help to navigate those challenges. Therefore, stop expecting a better child or a more perfect child. Set expectations and goals for your child and work towards those, encourage your child; provide support in whatever way your child needs and/or you can, but at the same time, really and truly accept your child, autism and all.

As a parent/caregiver, do not obsess over what society says, it will drive you crazy. We live in a society which celebrates high achievers and condemns children who do not meet societal expectations. We live in a society where parents compete to see whose child is "better," more accomplished, or more successful in whatever way. Do not compare your child to other children. Don’t try to make your child "normal." Society tells us that a "normal" child will attend school and sit at a desk all day and we glorify those who can do that.

Too many autism parents/caregivers get agitated and disappointed when their children cannot sit still for long periods or cannot learn because of dull, non-creative teaching methods. Instead of writing off your child as "not bright enough" or "struggling academically" find creative ways to teach your child, to engage your child at his/her level.

Always remember, you are and will always be the expert on your child. And if you are not – then become the expert. Go with your instincts – learn your child’s habits and behaviours; what triggers meltdowns and what helps your child in different situations. Empower yourself so that you can support your child in whatever way needed. Do your research; never be afraid to ask questions and find out information from therapists and educators; teach yourself, create opportunities for your child.

In the midst of everything, find something to believe in. Raising a child on the autism spectrum or a child with any special needs or disabilities can be exhausting and intimidating. Many parents/caregivers become depressed and overwhelmed during the more challenging days. Whatever faith you practise – find comfort in it, because there are days when you need something extra to hold on to. The autism journey might sometimes seem like a long, winding road with many obstacles – believe that your child came into your life to make that journey an extra special one.

Radica Mahase is the founder/director of Support Autism T&T