Tag Archives: Accessibility

Just be Kind

13 Aug

Friday March 13, 2020 was the last semi “normal” day I can remember. The kids were still in school, and I was preparing for the 2 weeks off due to the Coronavirus.

As everyone is well aware, 2 weeks turned into 5 months. The longest March break EVER!!!

It was hard on all of us, the kids especially.  Ladybug really missed her school routine and her friends, the boys were loving it at first until we entered full lockdown and they couldn’t see their cousins. It was and is physically and emotionally draining.

On a positive note – having a child who is medically complex put us at a slight advantage over the average person in Canada.

  1. We always have a stockpile of hand sanitizer, disinfectant wipes, and diapers.
  2. Coughing or sneezing into the “crook” of the arm was taught before the boys could speak their first words.
  3. Our hand washing protocol is very strict here.
  4. The complex care team at the children’s hospital is on speed dial and scheduled a “what to do if” virtual appointment right away to make sure we had all the meds we would need.
  5. We are used to socially distancing during cold and flu season.

Now that it’s nearly September, we are facing a new set of challenges – preparing for back to school during a pandemic. I never in my wildest dreams imagined that face masks would be a part of our back to school supplies, n’or did I ever imagine having to decide if or when to send my kiddos back.

Every parent has the right to make this choice based on what is best for their family. As of now, we have chosen to send the boys back to school on September 8th, and I’m still waiting to hear what the plan is for Ladybugs school. I’m contemplating driving them back and forth, which means that my plans for when the kids return to school, will have to be put on hold again. It kinda sucks! It’s frustrating! However,  it’s our life now, and as crappy as it may seem at times, it could always be worse. Like I’ve written about before, it’s all about perspective.

Please remember to always be kind to one another, and try not to attack parents for their choice on sending or not sending their kiddos to school.   Whichever path they decide is the RIGHT one.

Just be kind.

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October is Dwarfism Awareness Month

6 Oct

October is known internationally as Dwarfism Awareness month.

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If I’m going to be completely honest, this was never even on my radar until this past September. I really didn’t know that much about little people aside from a couple of relatives, as well the Roloff and Arnold/Klein families who are featured on TLC’s Little People, Big World, and The Little Couple.

For the past few years I’ve been fighting non-stop to get answers as to why Ladybug wasn’t growing. She is nearly 10 years old and the size of a 2-3 year old. I was always told that a shorter stature can be a part of CDG – but this was beyond a shorter stature. In the summer we were told that she “qualified” to start HGH  (human growth hormones) to help her grow.  The doctor was all ready to get started but this didn’t sit right with me. Setting aside the football size field of horrible side effects, they still hadn’t given a reason as to WHY she wasn’t growing. Think about that for a moment – it’s like a person who keeps breaking a bone and the doctors don’t find out why they just keep putting a cast on it. (On a side note we’ve also discovered in this quest, that Ladybug has Osteoporosis) I wanted to know why she wasn’t growing before I’d even consider putting her on HGH.

After having a couple of scans, we waited patiently for an appointment with the lovely metabolic geneticist that diagnosed Ladybugs subtype initially, to try and get some answers. It was at this appointment that she confirmed, Ladybug is a little person. She has a rare form of Skeletal Dysplasia otherwise known as Dwarfism – her body is fully proportionate it just isn’t able to grow like an average person. Similar to her type of CDG, CDG SLC35A2, this form of dwarfism is not genetic. Meaning Daddy-o and I don’t carry the gene.

I’m typically pretty strong in appointments – when we received Ladybugs initial CDG diagnosis I was prepared for it, when the onset of tonic clonic seizures started, as heartbreaking as they are, I was prepared for them because I knew how horrible LGS was. However, this diagnosis hit me hard. For years I was fighting for answers. Answers as to why she isn’t growing – 1 cm in 2 years is not typical by any means. When I heard her say the words “little person” I broke down and cried. It wasn’t tears of sadness or grief, it was tears of relief. Relief that I now know why she isn’t growing, relief that I know HGH will not help her type of dwarfism, and relief that I no longer have to fight for answers.

So, this month – October, will be our first time celebrating International Dwarfism Awareness. We have already been welcomed into the LPO – Little People of Ontario community and I’m looking forward to meeting them at the Holiday Party next month.

Between going back to school and wedding planning things have been pretty hectic, however, I will be writing a post soon about Dwarfism. If you have any questions please feel free to reach out to me and I’ll do my best to answer them.

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On The Move

2 May

As I was getting ready to write this update, for some reason the theme song from Days of Our Lives played through my head. I can’t believe that it has been 5 months since my last post.  I guess time really does fly when you’re having fun.  The school year is winding down, and I’m now starting to plan our HUGE summer adventure. I won’t give too much away just yet,  but, we’ll be packing up the kiddos and taking our Airstream down to and across the USA – meeting some very special people along the way. I’ll be starting a new blog to share our journey with everyone too, so I’ll keep you posted.

Ladybug has been doing really well. She is excelling in school – and has grown very close to her adorable little classmate (who is quite the princess too). She is also making choices for which activities she wants to do during her day, and loves going for walks in her gait trainer. She has even started walking towards her classmate to be near her. *heart melted*
Here is a picture of Ladybug at school doing her physiotherapy in her gait trainer outside.

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There is alos another new fancy piece of equipment called a Dynamic Stander. I would have never thought that Ladybug would have liked this as she LOVES to move her legs, but, it is to entice her to stretch out her arms and touch the wheel to move around. She seems to be enjoying it as well.

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Ladybug also got to be the “swing tester” for her school. They are getting a new fully accessible swing and she got to go to the company that makes it to try it out and give her seal of approval. According to her teacher, she got quite upset every time the swing stopped, which doesn’t surprise me as Ladybug is becoming very good at communicating her wants and needs now.

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The Accessible Rockton World’s Fair

6 Oct

There is no question that my absolute favourite time of year is autumn.  The crisp air, the breathtaking colours of the trees, chai lattes, and last but not least The Rockton World’s Fair.

You see, The Rockton Fair has been a integral part of my life since I was an infant. My family, like so many in rural Flamborough relate Thanksgiving Weekend to Rockton Fair Weekend. For most of the farm kids it’s a chance to show off everything you’ve learned in 4-H. As a farmer’s daughter myself I was involved in the Flamborough 4-H Dairy Calf Club and looked forward to the fair almost more than Christmas.

When I became a mom the excitement for Rockton Fair time was just as strong.  I couldn’t wait for Ladybug to experience the lights, sounds and smells.  The first year she spent in the hospital but has been every year since.  This was Ladybug last year at the Heavy Horse Show – 6 horse hitch classic.  Which is incredible to watch and runs on Monday October 13th at 1:45 p.m.

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The accessibility of our amazing fair never really occurred to me until I had a daughter who needed a wheelchair. If I was walking around the fair myself, it was an acrobatics act just to open a heavy door and hold it open long enough to get through.  Not to mention trying to get a wheelchair over rails on the ground to watch the 4-H shows. I couldn’t even imagine someone trying to maneuver their way in a power wheelchair.  Between this and the lack of wheelchair accessible parking spots on the fairgrounds I knew something had to be done.  There was no point in getting frustrated over everything – I needed to take matters into my own hands.  That is exactly what I did.

I spoke to a key board member with the Rockton Agricultural Society (RAS) who knows first hand how challenging accessibility can be, and together we spearheaded the Accessibility Committee.

It will be a piece by piece transition to becoming as fully accessible as a rural fair can be, but I’m so extremely proud that I had a role in starting all of it.  This year bathrooms have been rebuilt to be fully wheelchair accessible in the office building, many more wheelchair parking spots have been added (my personal quest), and power doors in the main office entrance.  This is just the beginning my friends.  The RAS is in the process of having a brand new sound system put in for the hearing impaired, more power doors will be installed, and I’m hoping to come up with a solution by next year to make the show barn more accessible to those with wheelchairs, walkers and even strollers.

The Rockton World’s Fair has been and will always be my Thanksgiving Weekend. I would absolutely love for all of you to head out to Rockton and see why it’s so special to me and so many other people.

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I also welcome input good and bad on how accessible you find the fair.  Even if you don’t have a disability, if there is something you think I can help with please let me know.  You can reach me here.

Hope to see everyone there.

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