Having an autistic child affects everyone: parents, grandparents, siblings and extended family members. The pressure can be enormous in the struggle to navigate life in this new way. Raising a child with autism can place tremendous demands on mothers and the family. One mother who knows this reality is Lyn Lavigne. Lyn is married with three boys; Matteo, 15 and is autistic, Enzo, 11, and Hugo, 9 years old. Lyn and her family had to find ways to adapt to the challenges that come with raising Matteo, whom they love dearly. However, what we need not forget is that autism also means unique perceptions, special talents, distinctive humour, a view of the world from a different lens- no harm, malice or greed intended. This is Lyn and Matteo’s story.
Matteo is my firstborn. In my eyes, he was the perfect baby. He slept a lot – still does. He is now a teenager who has accomplished so much already. He attends International School and enjoys playing cricket, golf, and tennis. He had to choose one sport, so he settled for tennis. He is part of the Seychelles National Team and has been proudly representing his country in several overseas tournaments through CAT (Central African Tennis). His best results; he made it to semi-finals for doubles and quarter-finals in singles. He was ranked 36 in Africa for under 14. Matteo likes Geography and Physics and is an avid plane enthusiast. We are so proud of what Matteo has achieved so far.
At the age of two years, I noticed Matteo was regressing and my first thought was perhaps he was ill or it was just part of his development. Eventually, I started keeping records of the number of words spoken but to my despair, weeks turned into months, with very few words spoken. I was referred to the Early Childhood Intervention Centre in English River, Seychelles, where he was assessed for speech delay and therefore required speech therapy. During this time, he seemed dreamy and looked distanced. Some days he looked ‘lost’ in his own world with no eye contact and not responding to his own name. I became desperate, as I didn’t know what I was dealing with. By the age of four, in Australia, he was finally diagnosed with ASD.
Self-blame and Acceptance
Being a first-time mum with no experience had its own challenges, so being a new mum and having a child with a condition – now that is a completely different kettle of fish! We went through the whole process of grieving, self-blame, then accepting the reality and moving forward quickly. I found myself constantly crying and feeling so helpless, especially as autism back then was not well known in Seychelles. Fortunately, I was in a position where I was able to step back a bit from my work, so I could focus on him. The biggest challenge at first was communication, especially verbal, and he was using a lot of echolalia – repeating what we tell him. It was frustrating for all of us.
A few years before I even dreamt of becoming a mother, I read a book – The Curious Incident of the Dog in the Night-Time by Mark Haddon. I was really intrigued by the main character. He was a quirky 15-year-old boy, a savant with numbers and on the ASD. Little did I know that a few years later I would have my own special, quirky boy in my life.
Finding the Pieces
I became very patient and attentive; I fully immersed myself into his world to understand his perspective. I wanted to feel every aspect of his life. I found myself spending hours online reading a lot about this complex neurological condition. It is really like a puzzle trying to find the right pieces that fit together. I was so determined to do everything I could in my power to help him become the individual that he is today. I am truly blessed to have him in my life and so grateful to the Higher Power for granting me such immense patience and understanding. Above all this, I found the drive to help other families with children on the spectrum and be part of our children’s voices.
Raising Matteo Taught me…
to be patient and attentive-that every child is special and unique in their own ways. Patience, understanding and encouragement go a long way. Given opportunities, they can reach their full potential. They are gifted in their own special way and nurturing is key. Each little progress made is such a positive step and it gives you a good sense of accomplishment. Matteo is a talented tennis player. Playing tennis has helped with his social abilities, improved his coordination, and he is calm and focused.
One day at a Time
Every day is a different day. We went through stages of being a picky eater, not wanting to change routines, sensitivity to certain sounds such as popping balloons and thunder. That made his level of concentration at school poor and he was often tired at the end of the day. But since I have learned what to expect, planning and letting him know what to expect well in advance certainly helped. Although this can be time-consuming, it is worth the effort, as it eases a lot of unwanted situations. If something arises which is rare nowadays, then we go over the issues as and when it happens. We have indeed come a long way and made tremendous progress!
In what we consider a normal family, one hopes that the younger ones would look up to their older siblings – in our case, the dynamic is a bit different since Matteo is the eldest sibling. It took some years for them to adapt and accept. Certainly, they raised many questions about his quirkiness, his speech, blocking his ears and certain unusual behaviours which they would consider as childish for a sibling older than them. I also on many occasions took part in raising awareness campaign including at the school where they attend. This was a big step towards acceptance and respecting individualism throughout the school itself. Eventually, they started talking about their big brother the tennis player in school with pride. As he got older, they involved him in their conversations and games, which is such a joy to watch! As parents, we encourage and point out those positive aspects which of course give them that feeling of responsibility which they enjoy. They even taught him jokes and idioms which is a huge challenge!
In Seychelles, there is a lack of resources – there are simply not enough professionals such as child psychologists, speech pathologists, occupational and behavioural therapists. There need to have more trained staff for specific services such as PECS (Picture Exchange Communication System) and ABA (Applied Behaviour Analysis). All those services are what the kids on the spectrum require to help them make progress. On many levels, they are having to ‘fit in’ instead of having different support to suit their needs, thus leaving them at a disadvantage.
I was one of the founding members of the, then, Pearl Seychelles which we started as a parent support group in 2011. We then realised that we needed more recognition to get the help we needed, so we started Autism Seychelles as an association in 2012. Since then, we have joined other associations in the Indian Ocean and we are part of PAOI (Pole Autisme Ocean Indien) with La Reunion, Mauritius and other Indian Ocean islands. In 2018, we hosted the first Autism Conference in Seychelles. I also took over the presidency of PAOI and I am a representative for Seychelles and other Indian Ocean Islands. We were fortunate to have as a guest speaker and ‘parrain’ of PAOI, Josef Schovanec, who is an advocate and is also on the spectrum – his visit to Seychelles was such an eye-opener on autism. So, for me personally, the association has allowed me to meet some wonderful parents and professionals not only in Seychelles but also regionally, the African continent and globally. We get to share our experiences and knowledge. It is such a huge relief knowing that you are not alone, and we all have that one purpose – fighting the same cause.
You are Never Alone
If you have an autistic child —never give up on them. Although it is not an easy road— days of trials, you get tested for your patience, pushed to your limits, and find yourself, some days, in despair. Sometimes, you find yourself going back to square one and having to start all over again—remember it is not about a race, it is enjoying the precious gift you have been given, so let them flourish at their own pace. Take breaks and take care of yourself as much as possible, then, keep going. Slow progress is better than no progress. If you are reading our story because your child was recently diagnosed with autism spectrum disorder, know that there is a very bright light at the end of the tunnel you’ve just entered—you don’t have to do it alone.
Support, Accept and Understand
No two kids on the spectrum are the same. They are all unique individuals and they each have something beautiful to offer. It is important to look out for their points of interests and use those as tools to help them progress. From the community — we need support, acceptance and understanding. Autism does not come with a look, it is an invisible disability, and yet those individuals are capable of many things. The trajectory of all of our children’s lives has to be their own—the journey may look extraordinary or ordinary. Whatever form the journey takes, the potential to do great things depends on the support, acceptance and understanding during that journey.
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