The invisible disability

A week ago, I read in the news about a lady who suffers from Crohns disease, being abused by a man in a wheelchair as she parked in a disabled carpark because he didn't think she was 'disabled'. This really hit home with me, not just because I know people who live with this disease and they're some of the bravest, strongest people I know, but because I know all too well that not all disabilities are visible.

Liam, who turns four in March, is an all too present example. At first glance, he seems like a typical child. He's friendly and adorable, smiles and greets everyone he meets, gives cuddles freely, walks and runs (even jumps now!), eats on his own, and loves being outdoors. He can also say many words and is starting to speak in short sentences. He also knows the lyrics to full songs and can carry a tune pretty darn well. He absolutely LOVES being around people and he's a natural comic. All in all, he's a joyful, inquisitive and loving little boy.

BUT, he's a little boy who also flaps his arms when he gets excited or agitated. He tires easily as he suffers from low muscle tone and it's taken him nearly two years to master going down a slide as his little body just isn't strong enough, which his 20-month-old brother instinctively learned in weeks. He is far smaller in height and weight than his peers and often gets mistaken for a two-year-old. His speech is still indiscernible to most but those closest to him. He obsesses over things (like Thomas the Tank Engine, certain foods, having things in his possession in a certain order and grouping) and if it doesn't go his way he has terrible meltdowns. He is sensory-seeking on his hands and constantly needs to touch or hold something, while being sensory-averse from his neck-up, so touching his face to put on sunscreen or brushing his teeth is a daily battle. He has a wandering tendency, and will wander away the minute you let him walk by himself, without any regards to where you are or who he's with. He has a heart defect. He may not ever be able to live independently. He will need aids to help him through school and therapies for many years to come. But you won't know all these just by looking at him.

You see, Liam has Williams Syndrome, a rare neurodevelopment, genetic disorder, which I sometimes also think of as an invisible disorder. This is because most people don't know what Williams Syndrome is and have never heard of it. We certainly haven't until Liam was diagnosed three years ago.

His disability is not obvious, not until you realise he's a nearly four-year-old child and not half his age. Not until you know him. To the outside world he seems like a regular child, and sometimes that's a double-edged sword. Because some days, it's easier to go through life with a child like Liam when people can look at him and immediately see that he's not 'typical'. That he has a disability. You receive more understanding, more kindness, perhaps even more help from those around you, when people understand that you're struggling more than anyone to hold his trashing body when heading to your car because he wants to walk on the street, and you're not just an unfit mother holding her child by brute force, although it may look that way. That his anxiety from not having a cookie in his hand right that very minute, resulting in a screaming child in the middle of a supermarket, is not a typical toddler tantrum but a deep, stressful event that you have sometimes no control over.

When they see you struggling to lift and seat your growing child into a shopping trolley that's getting too small for him, people may understand why you still persist to do so, rather than judging you for not being able to get your child to walk alongside you. If others could see his disability right away, they won't question why parents like us sometimes have the use of a disabled carpark, because as Liam gets older sometimes that becomes necessary. It cuts out the distance from where you're parking to the place you're entering, which may be crucial with a child who wanders, who doesn't have the ability to focus or listen or understand simple instructions. Who do not understand danger and have no concept of strangers. When he gets too big for a stroller and have to walk on his own, it may help to minimize any potential incidences if he only has to walk a few metres to the door rather than across a whole carpark where there are plenty of distractions along the way.

You see, some disabilities are not visible. But people are always so quick to judge, and that is one tough lesson I had to learn too, in the course of parenting a child like Liam. Because you never know what lies beneath the surface, what someone else is struggling with, what reasons a person have for doing what they do. You never know why someone who looks able-bodied from the outside is parking at a disabled carpark. Sure, there may be people in this world who'll take advantage of a situation. People who abuse the system and that's unavoidable. But rather than letting a negative judgement be my first response, I'm learning to practice kindness first. Because at the end of the day, that's all that matters. That's all I want for my child when he faces the world on his own. To be met with kindness, in every situation.

His disability may be invisible, but over time I've come to see that as a good thing. Because people see HIM first. They see him, and not just a child with Williams Syndrome or whatever other diagnoses there are out there. They see Liam. Without immediately attaching any preconceived notions before he's even said a word. They get to know him, as a loving, fun, curious and cheeky little boy, and having Williams Syndrome is simply another part of him. And that's the way it should be.


Comments

  1. I will remember your words everytime I see someone who looks ok parking in the disabled carpark and practise kindness first. Thanks for the reminder.

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    1. It can be difficult to figure out who really needs it and who's taking advantage of the situation. But the way I figure that's not our call or judgement to make. The person who's being rude/inconsiderate will have his/her own lesson to learn in the end, and if everyone just lives with kindness in their hearts, the world will just be a better place. =)

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  2. I can really relate to this post - I have a little boy with hypotonia which means he can't walk and only just crawls at 17 months. However he is extremely tall for his age and is taller than most 2 year olds. This makes our situation worse as people expect 2 year olds to be walking and people always question (in a not so nice way) why I continue to carry him implying he is lazy and/or I'm spoiling him. It is so hard physically on me carrying him everywhere but made all the much better by the awesome personality that he does have. I hear you on acting with kindness first! You can almost never tell what other people's stories are by a first glance.

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    1. First of all, hugs from one momma to another! Been there all too many times and it can be really frustrating. On the one hand you want to explain yourself and your situation, and on the other, you think but why should I? Liam only started crawling at 16 months and he took his first steps around 24-months. Today he runs and jumps, but he tires out easily and he still struggles with steps and coordination. His upper body is still weak and floppy, but it doesn't stop him. =) Wishing you and your little boy all the strength in the world! x

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  3. This speaks volumes to me!! Unfortunately it only gets tougher the older they get. A teenager with an "invisible disability" is proving to be the greatest challenge of my life. The older they get the more others expect.

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    1. Oh no! That's not what I want to hear, although it doesn't surprise me one bit. =( I guess we just take it one step at a time and try not to worry too far ahead into the future. Sending lots of hugs and positive energy your way!

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  4. Beautiful, thank you for sharing this :)

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    1. My pleasure! Thank you for reading!

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  5. My husband has a prosthetic leg. He put off getting a handicapped parking sticker for longer than he should have. By the time he leaves a store he is in pain from walking on a hard surface. He received a nasty note on his windshield because it didn't look as though he had a disability. I wish people would not be judgemental of others. No one understands what someone else is going through.

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    1. This is exactly the kind of situation I want people to be aware of. Yes, there are many people out there who may take advantage of the situation but many more who doesn't and is completely entitled to use a disabled car park. I'd rather save judgement rather than hurt someone who does not need any further pain inflicted on them in any way.

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