Advocacy, Awareness, Special Needs

Ask Questions, but Be Kind

“When will you be able to stop worrying about his heart?”

“When will he be fixed?”

“Is he fixed now?”

“Will she grow out of all of this?”

“Now that his heart is fixed, he should act more normal right?”

“Will his heart grow back?”

“What’s wrong with him?”

“What’s wrong with her?”

“What’s wrong with you?”

“Why doesn’t he walk?”

“He’s old enough to walk, isn’t he?”

“If you put him down, he’ll learn to walk.”

“You’re holding him back by giving in with a feeding tube.”

“Hypotonia sounds like an excuse.”

“But he looks normal.”

“But she looks so normal.”

“But he doesn’t look sick.”

Months ago, I asked parents of special needs and disabled children to share the inappropriate/strange/uncomfortable questions and comments they’ve gotten regarding children. Surprisingly, I received very similar responses (in varying) degrees from everyone. The majority of the comments came from strangers and distant acquaintances, but some of the hurtful comments were uttered by friends and family.

Interestingly enough, all of the questions and comments listed above, I have personally heard regarding Braveheart. We’ve been told that if we just put him down, he’ll somehow miraculously walk. Yes, I believe in miracles, but it is rather insensitive to tell a parent that if they just did this and that, their child would accomplish XYZ, despite his or her medical or behavioural condition, without any effort whatsoever. It implies that the parents are holding their children back from succeeding.

When it comes to all children, parents want nothing more than to see them thrive and succeed. The same goes for the parents of children with special needs. Almost all special needs parents that I have spoken with want their children to accomplish the same things that typical children accomplish. We celebrate even the ‘smallest’ of milestones as though they are massive accomplishments. Because, to us, they are massive accomplishments.

In a previous blog, I stated that many special needs parents would prefer that strangers ask questions rather than just stare. This remains true. Many people, when asked about hurtful comments made, mentioned that others staring at their child judgmentally was perhaps the most hurtful. 

The list of comments and questions above are understandably out of curiosity, however, they should be asked in a manner that is nonjudgemental and that is sensitive to the parents and the individual’s feelings. Instead of asking “what’s wrong with you/her/him?”, one could ask, politely, “May I ask, what condition does he have?” or “May I ask why he needs an oxygen/feeding tube?” Instead of asking, “When will he be normal?” maybe ask, “Is his condition life long?” 

“Normal” is a very loaded word. Special needs parents tend to find their own new normal. “Fixed” is also a very loaded word because it implies that the child is broken.

Next time you see a mum carrying around her two-year-old all the time (or even having an older child in a stroller) don’t judge them. Perhaps the child is unable to walk. Not because they are spoiled, but because they have a condition that hinders them from walking. Looking “normal” does not guarantee health or strength. There are many invisible disabilities. 

I am 100% supportive of people asking questions, but I am also 100% supportive of the questions being asked with kindness and sensitivity, not with judgment and hurtful phrasing. So, do ask questions, just think about the questions before you ask, and try not to make your own assumptions about individuals. Kindness goes a long way.

Braveheart in his Gait Trainer

Medical, Storytime

The ER vs. Medical Parents

Happy New Year Everyone! In the past few months, I have completely slacked off on my blogging. However, I intend to be more active here this year. I’ll try my best. This blog was actually written just after Memorial Day (May 2018), and I just never posted it! *hides* Anyway, I decided to post it anyway! haha.

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Medical, Storytime

First Heart Surgery

Imagine this. Your baby is in the hospital, hooked up to various monitors. It’s 3 in the morning and alarms from those monitors are blaring. Lights are flashing. You’re watching numbers jump all over the place, and you aren’t sure exactly what they mean. Nurses rush to your baby’s bassinet and you’re asked to step away.

This is a regular occurrence in a NICU or pediatric ICU.

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Braveheart’s Birth Story

July 9, 2017. A day I will never forget. Around 10am, I awoke and stretched, murmuring to my husband that I’d had the best sleep ever. Within 15 minutes, lying there in bed, I was gripped by what I was certain was a contraction, and then if certainty wasn’t enough, my water broke.

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Braveheart's Progress, Medical

A Raspy Little Voice

This week I’m not going to talk about baby boy fashion or about Braveheart’s heart, but rather about something we don’t discuss much. His vocal cord. When Braveheart was born, he had a healthy, loud cry. After that, we didn’t hear him cry again until after his first surgery, and what we heard was not the cry you’d expect from a baby. It was breathy and weak, almost silent. A squeak of sorts. Rather heartbreaking, really.

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baby fashion

Baby Boy Clothes – A Rare Find?

Baby clothes. Who doesn’t like them? (Don’t answer if you don’t lol). But seriously, I adore baby clothes. There’s a certain charm about them. Plus they’re so teeny tiny that it just ups the squeal factor. When my hubby and I first found out that we were expecting, the first thing we did was go shopping to buy a onesie with something related to “grandma” – to break the news to her. Meanwhile, we melted over cute infant dresses, frilly socks, skirts, and sun rompers. By far, girl clothes were the most adorable.

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