Autism Spectrum Disorder- Finding Mia
Nyla Ma-low, (nee Perrault) grew up in the district of Beau Vallon with a foster family. Her mother gave her up at the age of five, she wanted Nyla to have a better life. She moved back in with her mother when she was a teenager but Nyla’s view on motherhood and how she was going to bring up her children was shaped by her upbringing. Nyla promised herself that she would dedicate all her time to her children if she ever had any. She missed having those special milestone moments with her own mother—bonding and having the mother-daughter relationship. Nyla is now married with her own children, two daughters- Leanne 16, and Mia 9, The prospect of raising children was always on Nyla’s life plan but what she wasn’t prepared for was that one of her children will be autistic— she had never heard about the condition until she had Mia. The challenges of raising an autistic child floored Nyla but she didn’t give up on Mia although there were days that she wanted to. This is Nyla and Mia’s story.
Baby Mia
Mia was a quiet baby; she met all her milestones just like any other baby until she was two years old when failed to complete her assessment. At first, we brushed it aside thinking she was probably just late with her two-year milestones— every child develops at their own pace, so it didn’t really raise concerns, but we were told to observe her closely. At that point, I became very attentive to Mia’s development and noticed many signs that we probably had not been paying close attention to before. In fact, the signs that Mia was very different from other children her age were everywhere, and I had a completely different experience compared to when my firstborn was her age.
The Signs and Struggles
Mia was a late talker and that was the start of her frustration, she couldn’t express herself. She had such a temper and hated it so much if someone touches her, even me. She did not enjoy being hugged when she got hurt and she hated the fuss that came with it, it simply made her more agitated and angry if you tried to comfort her. Mia hated being in crowded places and if someone came over to talk to her, she got scared and she would run away and hide. She never made eye contact with anyone. Mia had the awareness of what was going on around her but chose not to react. She relished playing by herself most times. She was absolutely terrified of loud noises and would scream out loud if I used the vacuum cleaner or blender. She would run away crying with her little hands over her ears each time we used these appliances— it baffled us—in reality the noise was actually hurting her. Along the way, we learnt that she was sensitive to noise, light, touch and smell. She started having difficulty sleeping and having nightmares. The list started getting longer —repetitive behaviours, constantly staking toys or lining them up, always in a daze or locked in her own little world and she had trouble socialising.
One thing that stood out the most was the habit of self-harming herself and it scared me. She would bang her head on anything, she had no sense of danger at all which meant that we could not take our eyes off her. I was permanently exhausted and I became a walking zombie. Anything and everything in our lives was about Mia, everything else was neglected including myself and the rest of the family.
Feeling like a Failure
As a mother, you want this perfect life and perfect family you’ve dreamt of, and sometimes I felt like a failure as a mother. It was hard watching children the same age as Mia reaching their milestones way before she did and achieving a lot more than her. As a mother I struggled silently with my reality for a while, I blamed myself and I kept thinking that I was doing something wrong. Having a baby puts a lot of stress on you, and having a baby with special needs is even harder, and on top of it all, I had to deal with postpartum depression although I did not openly acknowledge it. Life was hard. It was tough. It was mentally exhausting. It was heart-breaking. That was my reality and I solely took the blame and had many teary days. The hardest days were when I couldn’t comfort her, she was hurt or having nightmares and she wouldn’t let me cuddle her. A cuddle would normally soothe a child but Mia rejected this kind of affection.
The Breakthrough
My in-laws watched a program about Autism Seychelles that was aired on Seychelles Broadcasting Corporation, and the parents were telling their stories about their lives with autistic children. A lot of what they were saying about their children sounded like Mia’s behaviour. My inlaws encouraged me to seek help. At first, I was reluctant, and it took a while for me to get out of my shell and take the first step towards reaching out for help. My husband encouraged me a lot, he was a great support when I was feeling my weakest emotionally. We finally got an appointment with Dr. Athanasius in Seychelles as the self-harming had become a major worry. On our first appointment, the doctor was so supportive, she just let us pour out our worries and she listened attentively as we described Mia’s behaviour. She suspected that Mia could be on the spectrum but said she would have to run more tests to confirm the diagnosis. However, the tests could not be done straight away as Mia had to wait until she turned three which when they do the tests. In the meantime, I started doing my own research on the internet to find ways to help Mia until she was formally diagnosed.
Relief, Grief, Anger and Acceptance
“Understanding is the first step to acceptance, and only with acceptance can there be recovery.” – My journey to accepting that my child is different was not an easy one. Coming out of the doctor’s office that afternoon was one moment I will never forget. It was crushing, devastating, to say the least. As a parent receiving news that your child was different and would be different for the rest of her life was a lot to take in. The fact remained that we might have worse days ahead and that things we had planned or dreamed of for ourselves, family, and even our child would only be a dream. I remember burying myself on the internet frantically researching Autism Spectrum Disorder. The state of mind I was in, and the information I was reading affected me emotionally and mentally. I went into a state of denial and depression, I cried a lot but I had to put on a brave face for everyone especially my children. Once everything had sunk in things started to change. The depression was followed by the acceptance stage. It took a while but I got there eventually.
I continued to educate myself about ASD as it was something we had never heard of before. It meant we had to change our lifestyle to accommodate our new reality. Once you accept the reality that things will be different, only then can you move forward and get the help that you need—that I found out the hard way! I grieved, I became angry, I accepted that Mia was different and special, and then I stopped blaming myself and made new plans to accommodate our new way of living to give Mia the life and help that she deserves. A visit to Dubai confirmed that she was autistic. The doctors there gave me strategies to use with Mia to aid her development. When Mia was old enough to attend school, I became very anxious because school was not going to be an easy task for her. We feared she might never be able to attend school given the fact that she was very hyperactive. We had no plan to send our children to private school but the International School of Seychelles already had a program in place for children on the spectrum so it was our best and only option. It was a relief when she got a place and Mia is now thriving at school.
Finding Mia
Mia’s journey had to change course once we knew what we were dealing with. We knew that inside this little angry, screaming, and self-harming girl there was a sweet child locked in. I had to teach her to understand her feelings and to deal with different emotions and how to manage her stress levels— she would have a complete meltdown and cry each time she failed to do something right. She is a perfectionist and hates not being in control. We discovered breathing techniques that helped her and we would count down as a way to calm her. I know people judged me for having a screaming, kicking child on my lap and I would be counting down trying to calm her. The constant stares were hard for me and comments that my child was misbehaving and that I should be disciplining her were hurtful but for the love of Mia, I ignored the negativity. I also set boundaries, just because Mia is autistic doesn’t mean she gets what she wants all the time—it might have been the case before I understood what I was dealing with. I used to keep away from public places but I have learnt that taking Mia out even if it scared her meant that she would slowly adapt and be able to cope with everyday life.
Children on the spectrum are gifted souls who need to be nurtured the right way. They possess special gifts that once unlocked can be extremely helpful for them in life. They are our little miracles who fight battles daily that even us as parents can’t fully comprehend even if we try. Mia has blossomed into a beautiful butterfly and is spreading her wings now. She went from being a non-social child to be the one who lights up the room when she enters—from not being able to handle a crowd to now entertaining her own. We have made progress, and best of all she doesn’t flinch when I hug her. Mia now expresses herself so much and she is so loving and caring. We found Mia.
Mia the Gifted Artist
Most autistic children find something that they really love and use it as their escapism to their own world and for Mia it was art. We soon realised she was gifted in art and I had to share it with other people. I use to always share our story as I wanted to raise awareness that despite their challenges, children like Mia have special talents. During the lockdown, I bought her a lot of art supplies as I knew it was going to be hard being at home all the time. She started surprising me with watercolor paintings. I knew there and then that I should start documenting her art journey so I started an Instagram and Facebook page where I post her paintings.
She kept surprising us with amazing paintings, she got new fans who wanted to buy her artwork and that got her excited to create even more. Last year we were approached by a young artist who wanted to do a small exhibition featuring local female Seychellois, and Mia was the youngest artist featured in the exhibition. I was so proud of how hard she worked to get the pieces ready for her first-ever exhibition. Since Mia discovered art, she hasn’t stopped.
The Joys of Raising Mia
For our family, having an autistic child changed our life for the better despite the struggles and hardships. We grew together and learnt to appreciate the little things in life that we used to take for granted. When I joined Pearl Seychelles (now Autism Seychelles) in 2017 the group of mothers with children on the spectrum helped me a lot. They helped me see and understand that other parents were going through worse situations than I was, and how lucky I was to have supportive family and friends. Some children cannot even attend school but mine could. That made me appreciate Mia even more. I take joy in everything we can do together, the good days outweigh the challenging days. When you go through challenges, you learn to be thankful for what you have. Mia has taught us what life truly means —love is above all and that with understanding and patience you can overcome anything.
I have been more than a mother to my Mia; I have been her therapist, doctor, friend, and greatest supporter. I have been her rock in times of battles, and she mine because when I felt like giving up I just needed to look at Mia and she reminded me why I needed to be strong. I am proud of how far we have come—I gave my child something I didn’t get growing up; the true bond of a mother and her child. The joy of finding and raising Mia has been one of the greatest gifts of my life. I am thankful for Mia and I can now see beyond her autism.
