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Tuesday, January 25, 2022

Spotlight on Mum: How my son’s diagnosis changed our lives


When her son was just 28 months old, Sarah’s life took an unexpected turn.

Sarah defines motherhood as unconditional love, patience, and acceptance for your child. The first moments between the mother and baby bring a fundamental shift that changes your whole worldview, she says.

“There’s someone else who will always come first. You are no longer just an individual, there is this vulnerable part of yourself that is running around outside your body and needs your support.”

But at the young age of 12 months, a routine doctor’s visit became a life-changing moment for Sarah’s son. She had noticed a few things that had been on her mind. Her son had not spoken any meaningful words, he hated spending time on his tummy or crawling, and he had made no attempts at walking. It was at this moment where just one sentence from the paediatrician changed everything. “Your son probably has autism.”

Read also: Spotlight on Mum: Surviving a pandemic as a full-time teacher, PhD student and mother of four

Shock ensued and grief shortly followed. But after quick research into his condition, Sarah’s gut instinct told her something just wasn’t right, prompting a challenging year seeking answers to unknown questions.

“What exactly is happening with our son?” “Why can’t he speak?” “Why does he have so many gross motor delays?” “Why did he completely melt down when I took him to the grocery store?” “Why did he start lashing out at me?” were just among the questions racing through Sarah’s mind.

Meeting after meeting and assessments after assessments, Sarah and her husband finally received the answer they were looking for. At 28 months old, her son was diagnosed with Fragile X Syndrome [FXS].

Fragile X Syndrome

It’s a very complex disease, Sarah says, which was only researched by experts as part of the Human Genome Project 1991.

Fragile X is an inherited genetic condition caused by a mutation of the X chromosome. This is also how it acquired its name, Fragile X. It is a fairly rare condition, affecting 1 in 4000 males and 1 in 6000 females. FXS is the most common cause of inherited intellectual disabilities and one of the leading known causes of autism. Children who have FXS are commonly also diagnosed with autism, but to the average person, it may look like other similar disorders.

Ranging from mild to severe, FXS presents itself on a spectrum.

It includes speech delay, sensory processing disorders, social anxiety, epilepsy, ADHD, intellectual disability, autism and autistic behaviours, and also an increased risk for aggression.

People with Fragile X want to socialise, but social anxiety and mood volatility are a colossal obstacle to the simple act of greeting others. On top of that, intellectual disability may vary from mild to severe, but there are serious difficulties for the majority of children with FXS. Fragile X is a chronic condition and there is no cure, but it can greatly improve with therapy and medication.

“Celebrate every milestone at your child’s pace and see them for the amazing person they are”

For Sarah, her son’s diagnosis meant that her life was going to change. However, her incredible resilience helped her power through the difficult stages of grief.

“I think a lot of parents of young children with disabilities struggle with the stages of grief initially. At first I grieved for what felt like the loss of the life I thought my son would have, then I grieved for the life I thought I would have when I had to stop working and become a caregiver,” she told Doha News.

“Sometimes I was angry, and sometimes I was depressed. But one stage of grief I never spent much time on was denial, and I think that helped me and my son tremendously,” she added.

It’s this denial stage that parents tend to hover around and which subsequently serves as a hurdle for both the child and family. Early intervention is one of the most valuable steps you can take for children with special needs, Sarah explains. Denying that nothing is wrong for too long can cause your child to miss out on that critical window for learning important skills.

To raise a child with Fragile X Syndrome is no simple task and requires intense attention to help regulate moods, manage anxieties and provide the correct sensory feedback.

Read more: Dear Mum: Relax, your ‘best’ is enough this pandemic

As Sarah mentions, there is no break, you care 24/7 for a child with major health challenges, especially for active kids like her now 7-year-old son.

At just three, Sarah’s baby started having seizures, prompting her to swiftly relinquish herself of her career to care for him.

“Around 25% of children with FXS also have epilepsy. It took us over a year to find the right combination of medications to get his seizures under control. At one point he would have 15 to 20 seizures a day. It was excruciating to witness while I was helpless to stop them,” she says, noting this is now under control.

But despite the excessive planning and attention to detail, no one could quite see what was awaiting us in 2020. To put it simply, the pandemic brought Sarah and her family’s lives to a standstill.

“We completely lost our support system overnight. My son does best when he has a routine and that evaporated with lockdown. His school closed, he could no longer go to his speech and occupational therapy, his swim lessons with Freestyle Aquatics were cancelled, and our regular trips to the pool and playground had to stop.” All these changes left her son feeling confused and frustrated and triggered destructive behaviour and aggression.

Like many children, the real struggle came with the introduction of online learning. But Sarah’s son, who has an attention deficit, faced added obstacles. Three Zoom sessions a day for a child that struggled to sit still for prolonged periods was a daunting task. School became a problem and his hard-earned skills regressed, Sarah says.

Silver linings

But there were silver linings.

Crafts, slime and water activities soon took over their home and the family learnt to be okay with the turbulence.

“One of the best things to come out of the pandemic was recognising that it is alright to slow down and stop rushing from one activity to another, and not put so much pressure on ourselves. Slowing down can be pretty great compared to the daily commute and relentless scheduling.”

Sarah’s profound advocacy for her son has taught her that it is important to learn how to be flexible and adaptive. As a full-time mum and caregiver, there is no doubt that she has a packed and challenging schedule.

Despite this, it is absolutely essential to fight for even the most basic accommodations and be your child’s voice, she says. It’s also important to prevent others from making mums feel ashamed or embarrassed by their kids. Special needs children are not lesser than, but are just beautifully different, she adds.

“Celebrate every milestone at your child’s pace and see them for the amazing person they are,” she told Doha News.

“There is nothing like watching your child experience something for the first time, be it waves on the beach or a new food. Having children brings wonder back into your life. The snuggles are pretty great too.”

Sarah’s advice to other mums with children with special needs:

  • Take care of yourself so that you can take care of your children
  • Practice mindfulness and find ways to build your resilience
  • Build a support system because life as an expat can feel isolated when your family lives so far away
  • Make friends who understand what you’re going through, even if you only meet up occasionally for a cup of coffee
  • There are wonderfully helpful people at the Child Development Center, Sidra Hospital, Step by Step, the Sensory Souk and Facebook groups like Doha Mums Out of Sync

Chereen Shurafa is a Doha based community counsellor, writer, and certified change coach. She is the founder of “Dear Chereen”, an online platform dedicated to mindfulness, mental health, and inspiration.

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