Parenting an autistic child - Leah's love for Lucas

DR RADICA MAHASE

Educator Rita Pierson said, “Every child deserves a champion, an adult who will never give up on them, who understands the power of connection and insists that they become the best that they can possibly be.” This week I am happy to feature a mother who personifies these words. Here is Leah’s experience.

“Hi, my name is Leah. My family consists of my partner Rennie, and our son Lucas. We’re quite family oriented and rooted. We enjoy doing anything with water; from going to the beach whenever possible to having pool days, to playing with water balloons around the house. My son Lucas will be six years old in August. He attends the Nova Satus Private School and is presently in Infants One and anxiously looking forward to moving up to Infants Two.

"Lucas is such an amazing and brilliant child, he’s what some might identify as hyperlexic. He loves reading books way above his age range and he identifies words and understands the meaning of them without being told. He’s obsessed with colours and shapes. Water, he loves the water. I think that’s his happiest place. He enjoys listening to music. Lucas has this thing where he can hear a song once and remember the rhythm and melody and hum the song and because of that we decided, why not have him learn to play the piano, and oh, has he adapted to it.

"He loves to keep his things in order and colour coded. He has this knack, he remembers the order in which things were taken out, so if he gets new blocks or crayons or colours and they were in a specific order, guaranteed, it’s going back and must stay in that order. What he doesn’t like is a disruption to his order. He doesn’t like when he’s taken out of his routine, he gets flustered, and it throws him off.

"Lucas’s speech was delayed, and he only really started making clear phrases when he was four. When he was a toddler, communication was very challenging. Neither of us understood the other and because of this he used to hit his head just about on any and everything he could find – the sofas, floor, walls, anything. It was terrifying and heart-breaking to watch. It was during one of our check-ups, a nurse asked about his speech. I guess based on his age, they thought he should’ve passed certain milestones. They recommended we see a specialist and he was officially diagnosed with autism spectrum disorder in September 2021.

"Honestly, I felt like the biggest weight was lifted off my shoulders. I could now put a finger on why communicating was so difficult, why he acted the way he did and why he was doing the things he did. I knew at that point, the way we were communicating with Lucas was wrong, and we needed to adapt to his methods in order to better understand each other. I’ve heard of autism before, but to say I was able to identify the signs of a child with autism, I wasn’t. I didn’t know where to begin to look so when Lucas continued to babble as a toddler, I just labelled him as a “late talker”.

"Of recent, our newest challenge with him is understanding the concept of sharing and change. Lucas is perfectly fine with playing with his friends and cousins. He plays with them at school and at his grandparents’ home. However, because he’s been accustomed to having fun with his toys by himself, it’s an adjustment having them over and having to share.

"He has a little obsession with certain cartoon characters so the majority of his toys are themed. When his cousins and friends come over to play, he gets flustered when they choose these character toys. He prefers to give them specific toys to play with, ones he doesn’t have a bond with, and sometimes even those toys he doesn’t like them playing with it, for too long.

"We’re trying to have more play dates with his friends and cousins, so he can understand that it’s ok to share and its ok to have friends over to play with you. It’s a slow process for him, but I’m hopeful he’ll understand. I don’t doubt it.

"I think the best coping mechanism for any parent who has a child with any disability, is having a reliable and strong support system. Because I have these people in my life – my partner, my parents, siblings, co-workers, and friends, I’m able to “tap out”; regroup, reenergise, and refocus everything so I can then be the best mother possible to Lucas.

"I would like Lucas to be accepted in society and not looked at, as just a child with a special need. He’s more than that. I give Lucas the opportunity to express himself whichever way he chooses. I listen to him; I try my best to be patient. I give him unconditional love and remind him daily of how proud I am of him and how amazing he is.

"As a mother of a child with a special need, I can get overwhelmed and frustrated at times and I’m entitled to taking a break and having some alone time. I want other parents to know that as parents we are never perfect. We make mistakes and that’s okay, because we learn from them. It’s okay to acknowledge that we don’t always have the answers for everything and it’s okay to ask for help. It doesn’t make you look weak. Whenever you start feeling like this, use your support system, they’re there to help you. Don’t ever feel like you must do things alone.

"My two mantras I live by and would encourage mothers, more so mothers of children with special needs are:

Believe in yourself as a parent; you are your child’s best therapist and advocate, and Once you learn to appreciate the small victories, there’s no need for a finish line.”

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