As Sharon King gazed into the face of her second-born child, all she saw was her doll-like beauty: the almond-shaped blue eyes peering into hers, a tiny rosebud mouth, her face and shoulders covered in down-like peach fuzz. It had been a challenging labour that ended in an emergency C-section, but Daisy lay calm and quiet in her mom’s arms. A steady stream of nurses, doctors and professionals strolled in and out, looking at Daisy with a mixture of curiosity and concern.
“I remember the third evening well,” says Sharon, “I was forcing my tired eyes to read a novel that I had been enjoying before Daisy’s birth.” A doctor came in, hovering over my sleeping baby, his brow deeply furrowed. Tentatively, Sharon asked him what was wrong. “This baby isn’t normal,” he replied. “I think there is some kind of syndrome.” He pointed out her low muscle tone, her tiny feet.
“I felt as if I had been dropped into a dark hole,” Sharon describes. “I scooped up Daisy and examined my sleeping daughter. Whatever the future held, I knew we were in it together.”
Daisy was officially diagnosed with Kabuki syndrome when she was 12 months old. The condition varies from person to person, but Daisy had low muscle tone, joint hypermobility and severe learning disabilities. She was also non-verbal. At the time of her diagnosis, Sharon was pregnant with her third child, Lenny, who was born muscular and strong. “Intensely interested in his environment, Lenny was almost too able for his own good,” says Sharon. But despite his physical ability, he didn’t talk or point things out in his environment, preferring to sit and spin the wheels of his toy car.
Lenny was three when he was diagnosed with classic autism, and Sharon had to tell her eldest daughter, Rosie, then seven, that not one, but both of her siblings were wired differently.
Rosie, bright, inquisitive, academic, and socially challenged, was already different from her peers. She didn’t start speaking in words, but sentences, ideas and creativity flowing from her lips when others her age were still trying to form thoughts. At the age of nine, Rosie was diagnosed with Asperger syndrome.
“There was a period of retreat while I processed the fact that all three children had challenges,” says Sharon, who is now a speaker, advocate and author of How to Best Help an Autism Mum. “Eventually, though, I braved the world,” she adds.
“We attracted curious stares everywhere we went: Lenny wanted only to perch on adult shoulders or run off at dazzling speed. Daisy needed a specialist pushchair, and Rosie dressed bizarrely and would often appear to be in her own imaginary world,” shares Sharon. “I learned to transform strangers’ curiosity into an opportunity to share information and make friends.”
Explaining your child to others
A diagnosis of autism, severe ADHD or any condition that points to your child being different is, in itself, challenging. But how do you help your family and friends understand so they can explain to their own children, who may view your child as being impulsive, rude, highly strung or naughty?
The Child Mind Institute, an American-based independent non-profit dedicated to transforming the lives of children and families with mental health and learning disorders, explains sharing the diagnosis with friends and extended family can be a challenge. The problems your child is facing may not be visible to others, but you will need the people you are close to as allies in helping your child.
- The first thing to do, explains Child Mind Institute neuropsychologist Michael Rosenthal, is focus on your child’s behaviours. “If they understand that it’s something different about your child, and it’s not intentional, then that can be a springboard for a bigger discussion about what autism is,” he adds. If your toddler doesn’t make eye contact and has a hard time playing with other kids, you could explain that it’s not because he is shy or being rude, that is just the way he is. Likewise, changes in routine, like visiting friends or family, may result in a meltdown – not because he’s naughty, but rather his routine has been disturbed.
- Try to explain the basics of your child’s condition, as well as the best way for these to be dealt with. Autism, in particular, is a spectrum of behaviours. As Child Mind Institute psychologist, Mandi Silverman, explains: “We often say children with autism are like snowflakes – no two are the same.”
- It’s also important to realise family members will have different reactions. “Let your family members express their feelings, but also tell them that you’re working with a team of providers to do what’s best for your child. You can also say that they are important to you and your child, so you hope they will be supportive,” advise experts at The Child Mind Institute.
- The Child Mind Institute says you shouldn’t be afraid to ask for help (and be specific in your needs). “This can actually be a relief for you and the people you’re asking, because it’s in our nature to want to help family and friends, but sometimes people don’t because they aren’t sure how or are afraid they might be overstepping.”
“I wish there had been a wise friend to support me in those early days.”
Sharon offers the following tips on ways you can help a parent who has a child with autism or any other condition (which you can share with your friends):
- Encourage your friend to seek out whatever support is on offer from educational and therapeutic services. “When parents and services work together in a mutually respectful way, everyone is a winner.”
- Encourage your friend’s advocacy for her child. “As a mother, I need to feel positive about my children and want those involved in their care to see their strengths as well as challenges. Having a friend who knows my child come along to a difficult meeting to support me is invaluable.”
- Support groups are invaluable, and it can be comforting to meet people who are in the same or similar situation. “But if your friend is feeling overwhelmed entering the world of special needs, she may need you to accompany her to initial meetings.”
- Strangers are curious, and this can be unwelcome. “An inquisitive stare or an ill-judged remark can be the last straw. Having you by her side to fend off unwanted interest or offer calm explanations will make all the difference.”
- Broken sleep is often a huge issue, affecting the parent’s physical, mental and emotional health. “If you know her child well enough, offer to stay in the house occasionally and be the one to get up instead.”
- As the child grows, so the differences can become more apparent. “Behaviour like rocking, flapping hands or bouncing (often called stimming) may mark them out.” As it may draw attention to their child, some parents may find these behaviours embarrassing or distressing and try to stop it. “But stimming isn’t just some annoying habit, it often gives a good indication of how a person with autism is feeling. It can show their distress or their joy, it can be a comfort or distract them from something intolerable.”
- Family functions and parties can be tricky, so be on hand to help out. Pack a goody bag filled with distractions, such as spinners and stretchy toys that serve as a diversion. “A prepacked goody bag can be the difference between your friend being able to stay at the celebration or having to leave early with a distressed child.”
- Your friend may say she can’t come out, or it’s simply too difficult for her to leave home, even for a few hours. “Keep asking, keep reminding her that she is a valued friend and that her company is very much wanted.”
- Keep reminding her that those who may be perceived as different can surprise us, and as young people can develop in ways that may seem impossible now. Energy spent worrying about the future will drain her energy today. “Calm parents, love and unconditional acceptance are vital ingredients for ensuring happy adult autists.”
Kim Bell is a wife, mother of two teenagers and a lover of research and the way words flow and meld together. She has been in the media industry for over 20 years, and yet still learns more about life from her children everyday.