The Special Journey
Mums of Children with
Having a child is one of the most exhilarating events in the life of a woman. For most, life transforms into being almost entirely about their little one. A mum closely watches her child and eagerly anticipates his every move, the first eye contact, the first smile, the first word, the first step.
Communication is one means of strengthening the bond between mother and child. However, for some, those moments remain elusive due to a developmental disorder, known as autism.
Here, four brave and inspiring mothers, tell us their story on living life with a child on the Autism Spectrum.
The Signs
Amina Asad says, “I started noticing changes in Abdullah when he was two and a half. He stopped eye contact and babbling and went mute.”
In fact, all four mothers, point out to similar signs such as lack of eye contact and no response to their child’s names being called out.
“It was almost as if he was hearing-impaired,” says Donna Van Vuuren who noticed these signs much earlier when her son, Ethan, now 10, was 9 months old.
Donna recalls, “My mum, who had many other grandchildren before Ethan, noticed that he wasn’t babbling a single word. She alerted me to the peculiarity much earlier on.”
Other than early detection, Donna was also a lot luckier in getting the family support she needed but for many other mothers, it’s a battle to convince those around that something is amiss with their child.
Dedra L. Stevenson recalls, “I am an American married to an Emirati. While talking about autism was relatively common in America back then, the awareness was much less in the Emirates twenty years ago. My in-laws would brush aside my fears and insist that being a boy, Ibrahim, who is 24 now, just needed more time to start speaking.” She continues, “One day, I got up abruptly during a family gathering and banged the door loudly. Everyone turned around except Ibrahim. He continued playing with his blocks, oblivious completely to the commotion. That is when everyone realised what I was trying to tell them.”
For high-functioning kids on the spectrum like Oscar, 10, the symptoms may vary. His mother Andrea Allen, says, “I remember him being an extremely quirky child, flapping his arms repeatedly. He also had extreme separation anxiety and could not calm himself down if I had left him alone for some time. Oscar also displayed signs of OCD and would want to continuously wash his hands. Initially, he was diagnosed with sensorial issues but last year, I was actually relieved to have a formal ASD diagnosis.”
Oscar is a high functioning autistic child. He is able to speak well and interact fairly with others but certain environmental conditions like loud noises can trigger an outburst.
Homeschooling is certainly an option for parents to consider given the rising cost and lack of affordable facilities.
Children with Autism do not accept changes very easily and any form of change can trigger an adverse reaction like screaming or repetitive movements. Autism normally affects boys four times more than girls and the exact cause of autism is still not clear. Research is ongoing currently but there is definitely a genetic link.
The Journey
Needless to say, the diagnosis is just the beginning of an extremely arduous journey for a mum with a special needs child.
“There still isn’t enough awareness of autism in society and parents like us get little support,” says Dedra.
Dedra recalls how there were few places for her son to go to get the right help, back then and she highlights the fact that there are very limited places for adults with autism to go to once they turn eighteen. She says, “It was such a struggle for me to find places which would enrol him as an adult. Eventually, I had to take things in my control and I hired two professional caretakers for Ibrahim and supervised his homeschooling programme.”
Homeschooling is certainly an option for parents to consider given the rising cost and lack of affordable facilities. Amina says, “with two other school going children, it is very difficult to manage financially. How does one afford the therapies required along with the school fee? I had to learn to help my child at home and somehow enable him to acquire the relevant life skills.”
Andrea had an extremely tough time with the school authorities where she had enrolled Oscar. “While we are trying to encourage inclusive education, there is much to be desired. Many teachers are not well-equipped to handle a child with special needs when they have twenty plus other regular children to take care of.” According to Andrea, an official diagnosis seemed to have given Oscar’s school the liberty to call her most days to take him back home due to his melt-downs. She continues, “Certainly, we need teachers to be better trained and equipped to handle special needs children. We need extra help in schools and sufficient integration with regular children. Just like other children, kids with special needs are precious too and need all the support they can get to become the best they can be.”
Parents with children on the spectrum, already have quite a challenge to deal with in terms of helping their children.
Unfortunately, on top of these challenges, there are financial and other health and social issues that they need to constantly battle with. Donna says, “I remember what a wreck I had become after Ethan’s diagnosis. I slumped into deep clinical depression. I did not want to meet anyone or do anything for myself. My life was all about Ethan and nothing and no one else.”
Other than health and mental turbulence, having a child with special needs can take a severe toll on a marriage. For instance, Donna’s marriage almost dissolved. She says, “At one point, my husband and I were on the brink of a divorce. The pressure on our lives was just too great.” Fortunately, Donna and her husband managed to save their marriage with counselling. Things also improved for the better when they moved to Dubai from South Africa. “We managed to find a good SEN school for Ethan and that took some pressure off us as he was getting the right help. Ethan improved significantly and we then had our second child, Eli, who is two and a half now,” she tells.
Unfortunately for Andrea, her marriage could not survive the turbulence. She says, “I had little or no support from Oscar’s Dad. Last year, when we faced difficulties and lack of support at Oscar’s school, his Dad was not supportive in my pursuit to help my son and our relationship was affected. We decided to part ways.”
Andrea is now bringing up Oscar and her younger daughter, Maisie, as a single mother.
Creating Awareness
All these four inspiring mums who have overcome so much to give the best to their special children, understand the need to provide support to others like themselves. They are carrying on with initiatives in their own little way to create awareness on autism.
Amina explains, “I am honest about my child and I let others know about his condition. He is my special child given by God and I am never ashamed of him. In fact, he brings such joy in my life in his own little way. Abdullah is so giving and loves me unconditionally”. Amina is happy to talk about her experiences with Abdullah and has done several live sessions on groups on social media to spread awareness. “Society needs to make things easier for parents like us and accept children with special needs as part of society. Also, I would like other mums like myself to know what to look out for while their children are growing up so autism can be detected early. The earlier the detection, the better the help that can be rendered!”
Other than health and mental turbulence, having a child with special needs can take a severe toll on a marriage.
Dedra has taken her mission to create awareness to another level altogether. She has produced a documentary based on her child, Ibrahim, and his journey named Lemonade. Lemonade has garnered a lot of appreciation as a made-in-the Emirates movie and has, in fact, won several awards like the Lady’s First International Film Festival, in Ireland for best executive producer. Dedra also uses the movie’s Facebook page to invite other mums like herself to share their experiences. She is now looking to gain support to create a fund for families like herself to have financial help to provide trained care takers to kids with special needs. “The financial pressure is just too intense for families like us. As a society, we need to help such families to provide the best care possible for these children.”
Andrea and Donna, who are also friends, wish to band together to create an informal meet-up for mothers like themselves to get together possibly once a month. They feel that mums like themselves need an outlet to voice out their concerns to other mums who will identify with and understand them, and guide them in the right direction. Currently, Donna runs a parent support group on Facebook called ‘Autism Moms & Dads Dubai’.
Indeed, having a child with Autism Spectrum Disorder (ASD) has its challenges but also its joys. It is extremely important for us as a society to understand this condition and provide all the understanding and help to such families as we can.
