Special Needs, Uncategorized

Life With a Special Needs Toddler During a Pandemic

Physical Therapy, Occupational Therapy, Speech Therapy, Developmental Intervention, Cardiology, Ophthalmology, Audiology, Neurology, Physiatry, Urology, Orthotics, Gait Trainers, Wheelchairs, Activity Chairs… these are just examples of the therapeutic and medical specialties and equipment that little man requires. Prior to the spread of COVID-19, as overwhelming as it may seem, it wasn’t too hard to keep up with all of this. And then… life basically just shut down!

Many children have so much more to deal with. Many medically fragile children require around the clock care.

In the beginning of March 2020, Braveheart was receiving 10 hours of therapy a week. It was a lot, but it was necessary for his development. PT, OT, Speech and DI allowed him to get that extra boost he needed to learn the things that “come naturally” to most toddlers. Then, as we went into lockdown, his 10 hours of therapy dropped down to 0 hours and became solely our responsibility. Us. His parents.

We’re grateful for telehealth, but let’s be honest here: telehealth is certainly not an adequate replacement for hands-on therapy with professionally and clinically trained therapists. Yes, the therapist are right there on our laptop screens telling us what to do and how to do it, but that can be pretty awkward. We are happy that we’ve always been those parents who paid attention during therapy sessions, but 1) little man does not cooperate with us the way he cooperates with his therapists and 2) again, we aren’t professional therapists or clinicians.

For an immunocompromised (due to his cardiac history) toddler with autism and an oral fixation (eeeeeverything goes right into his mouth!), we were not comfortable with enrolling him in pre-school last year. In addition to pre-school, he was supposed to resume adaptive aquatics/swimming for special needs kiddos, and begin adaptive gymnastics and hippotherapy (horse riding therapy). We also used to take him to the hospital for 3 therapy hours a week. But, alas, life has just been too dangerous outside of our clean, germ-free little bubble.

My entire household has been home since March 2020. That means we’ve been “stuck” at home for almost. Self-quarantined. We’ve turned down parties, we’ve barely met up with anyone at all, outings have been and still are brief, and with this wintry weather, we’ve not had much time outside of the house except for doctor appointments and occasional on-site therapies. In other words: it’s been quite lonely!

I’m an introvert and a homebody, so normally I love being at home. My idea of a fun day off is bingeing Netflix series or movies and spending time with my family. But 2020, for many special needs families, has certainly left us all feeling rather forgotten and forlorn. We’ve gone from seeing therapists 10 hours a week – and therapists really do start to feel like our “friends” – to seeing them briefly on the computer screen and barely being able to chat with them. People in general seem to have an out of sight out of mind mentality and simply don’t understand all the extra stress that comes with having a little one who requires so much extra medical and therapeutic attention.

I’m grateful to have my social media “family” who checks in on us, because they understand how difficult things are, but I’ve learned so many lessons about who our true friends are and who people we thought we knew truly are in general. It’s been a humbling experience and certainly an important life lesson. At first, we did mope about it. How come this person never even bothers to send a text? This person ditches every conversation we try to have. This person doesn’t even like or comment on my posts. And the worst woe-is-me moment I’ve had, perhaps, was the virtual heart walk last year in which literally no one joined us. We walked all alone; my mother, hubby, Braveheart and I. Honestly, I was pretty sore about that for a while, but I had to remind myself that some people just don’t understand the importance of our fight to raise awareness for CHDs.

Braveheart practicing walking in his Crocodile Gait Trainer/Walker

This year, I’ve turned over a new leaf, so to speak. Our little guy will be 4 years old in July, and though he’s not your typical almost-4-year-old due to his delays, we’ve seen him work so very hard through this pandemic. We are so proud of him. It’s been difficult feeling like we’re the only ones who know him – not many friends understand the battles he faces daily – but again, 2020 has taught me not to dwell on that. He’s happy, he’s basically healthy, and he’s thriving! It doesn’t look like everyone else’s definition of thriving, but it is! He is AMAZING (and oh so adorable lol). Being furloughed from my job for nearly a year and counting has taught me to be grateful for what we have and to spend wisely Admittedly, I have a massive baby-stuff addiction and I also love to eat out and order in. But I’m working on it!

In April, we’ll be welcoming a brand new baby boy to our family and we couldn’t be more excited. It’s the next chapter in our exciting adventure! I can’t wait to see Braveheart become a big brother.

We might still be in a pandemic, but one thing I’ve learned is that there is always something to be grateful for and always a lesson to be learned!

If you’re like us and still self-quarantined, hang in there. For those who don’t have to be as strict: check on your friends, be understanding, be mindful! Check on your friends with children, without children, who are working, who aren’t working, who blatantly show that they need help, who don’t blatantly show it and appear strong on the outside. Remember, not everyone is comfortable with airing their struggles and asking for help. *raises hand* I am one of those who never ask for help.

To everyone: there’s a rainbow on the horizon. We got this!

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.

Continue reading “The ER vs. Medical Parents”

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.

Continue reading “A Raspy Little Voice”