Caring for autism a lifelong journey with hurdles, joy, love

* "My son, Mounir, taught me the meaning of unconditional love, patience, strength, and courage"

 

 

For Joelle Lahlouh, being a mother of a child with autism is “a lifelong journey” with some hurdles along the way, but always brings joy and love at the same time. “Autism varies from one child to another and affects them in different ways. For my son, every step of the way has been challenging from achieving the simplest tasks to things he still can not do, but with consistent therapy and time, nothing is impossible,” said Lahlouh, a freelance fitness trainer in Doha. She was speaking to 'Gulf Times' in connection with World Autism Awareness Day, marked today (April 2)Lahlouh's son, Mounir, has autism and Coffin-Siris syndrome, which she said is only 200 cases worldwide, “so he has trouble in almost every aspect, verbal, oral “chewing”, social, communication, sensory, motor, cognitive. Mounir, she said, has barely any friends since he doesn’t know how to make friends. “None of which is his fault, he is just born that way, and instead of us finding ways to make them fit in, why don’t we teach the world how to interact and approach kids with autism because they truly deserve to be included.“Autism cannot be cured but we as parents can help our children overcome to some extent the challenges they face throughout. I, as the mother of Mounir, believe my son is a blessing, he has taught me the meaning of unconditional love, patience, strength, and courage. Through him, I have seen the world from a different perspective. I wouldn’t change him for the world but I will change the world for him,” Lahlouh said.About what makes children with autism so special over others, she said, they are ‘different but not less’, who simply need special care and more support, and who also want acceptance and understanding like any other person. “They live in their own special world and maybe if everyone for a moment stepped into that world they would understand what it’s like,” she said.About the impact of the Covid-19 pandemic on Mounir, Lahlouh said her son was not able to attend his schooling and therapies, not only physically but also virtually due to his short attention span. She noted that Mounir was out of his comfort zone – the “classroom” – a reason why he failed to continue his programme, which she described as a small setback or a stagnant phase. Like Mounir, many children with autism also experienced the same challenges and difficulties during the pandemic, paving the way for the World Autism Awareness Day 2022 celebration (today, April 2) to put a spotlight on the theme “Inclusive Quality Education for All”. Mounir also tested positive with Covid-19 twice, according to Lahlouh. “The first time he was hit by Covid, we were devastated on how he would fight it off but God works in mysterious ways and he was just fine barely any symptoms. Thankfully, the second infection was the same”. As for the positive impact of the pandemic, Lahlouh said they were blessed with a little girl, Maria in 2020. “It was a wonderful time for us to have Mounir bond with her and it has helped him so much as he now knows he has a lifetime friend, his sister. Covid taught so much about how precious moments are in life, how family is truly all that matters and even thought it was a hard and sad time for the world, I am sure we all took something positive out of it,” she added. Lahlouh lauded Qatar’s efforts in addressing the needs of children/people with autism and special needs, putting up many rehabilitation centres to help and support their families as well. “We have been in Qatar for 15 years, it is our home which we love with all our hearts. My son attends a special needs school which has done wonders with him. I highly respect how the country approaches the matter in the simplest ways of giving our kids a priority at the airport, in play areas, medical facilities and so on,” she said.Lahlouh’s message to parents who have just learned their child has autism: “You are not alone, we are chosen to for this journey, autism is not a burden. In my eyes, it’s a blessing, acceptance is the most important aspect. Once you accept it, you will know exactly what to do. Educate yourself on how to take on this journey, know that there is nothing impossible, stay positive and believe in your child and help them reach their capacity, not your expectation. “Yes it isn’t easy but it’s all worth it. Our children are our life, they make us who are, they say we teach our kids but believe me your child will teach you so much about yourself you will be surprised. “My son has taught me how strong I truly am, he is my smile everyday, my piece of heaven, my joy, my pride, my blessing. No matter how hard it feels don’t give up because your will, your love, your patience and perseverance will get your child to achieve so much more than you could believe possible. So keep smiling everything will be alright.”