Finding my space and time · Good Side of Life · Professional Life of a Parent · School Challenges

Doing it your own way!

I’m not sure why I never thought of it but someone clued me onto being able to bring my daughter in her wheelchair onto the ice.

There’s a few reason why I think that this is better for her to enjoy her ice time.¬† Firstly, there’s minimal physical handling beside lowering the chair onto the ice and lifting it back on, it’s fairly straight forward. With less handling, comes the lessen risk that one or both of us get injured if we sleep, fall or get tangled.

Secondly, she’s closer to her classmates height on the ice and is not sitting down on her sledge basically right at leg levels.

Thirdly, she can actively participate in skating ūüôā

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Nothing beats being able to do things your own way!

Have a great day.

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Good Side of Life · School Challenges

Cursive Writing

In Ontario, cursive writing is not taught in the classroom anymore. This is not part of the school curriculum. There’s a few clever teacher that stick it in their art program but that is not the same story across the province.

Here’s what I know about cursive writing, it’s necessary to form some essential neural connection in our brain. Writing comes from¬†the prefrontal lobe of the brain, our creative center.¬† Creativity is an essential part of us. Creativity is our Inner Child.

This is why every day, the children and I will be doing our cursive writing practice. If I lead by example, the kids will follow. My son definitely struggles but I have faith that this is a step in the right direction for him since his penmanship isn’t great. I feel that cursive writing could give him some freedom in his writing.¬† I give them creative freedom on how they want to trace those letters (ie. pen, markers, pencils, paint, etc)

There’s also this fantastic link:¬†http://alphabetpenandink.com/template/colorbook.pdf¬†

Professional Life of a Parent · School Challenges · Yellow Brick Road

Ownership & Responsibility

This week has been testing for us, being back to school as been a challenge within itself. However this year, as been extra testing as my daughter’s wheelchair’s anti-tip bars broken, one on the first day and the second on the second day.

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As I tried to remain calm as the bus driver tells me on the first day, that the anti-tip bar was broken first thing in the morning.¬† At this point, I am pissed, this is a safety feature on a wheelchair so¬†the anti tippers, means you didn‚Äôt need to worry about tipping over backwards because¬† your anti tipper bars would provide support if you leaned back on your chair. But without that safety feature, you will feel a lot different about going over uneven terrain or leaning back to grab something. As you can see this is an important feature. However, the school didn’t call, all I got is a note in the agenda! Seriously!

As the school is typically unavailable by the time, the kids are home by bus. I then proceeded to write an email for which I receive an apologize as supposedly the phone system were down and the email from the principal was never sent from his outbox.¬† These things happen but I still don’t know why they wouldn’t call me. They sure called the day my son forgot his indoor shoes at home and was in his winter boots.

The second day, I get another note in the agenda after specifying in my email no tondo this and again, it’s the bus driver that tells me.

I am trying not to overreact. A new manual wheelchair cost about $12K and it’s still not the most expensive one. Granted, the ADP program, a government run program, covers 75% of the cost and we were locally that our work insurance covered most of the difference. Having said this, my daughter’s wheelchair is no different then someone’s car, if you accidentally broke the mirrors on someone’s car while in their car, would you not tell that person, if not in person, at least by phone!¬† However unlike a car, there’s no insurance in any kind of breakage and this repair to get the anti-tip bars back onto the wheelchair will come out as another medical expense for us.

We need to keep working at this communication between school and our family.

Good Side of Life · Medical Parent · Professional Life of a Parent · School Challenges · Yellow Brick Road

Accessibility and Acceptability

Skating day at school is part of every Canadian school curriculum. It’s a Canadian traditions that goes back generations of frozen toes, sore legs, bums for beginners and great big smiles. I learn to skate on the frozen island that would crop up on our farm fields, it’s not until I moved to the city that I encountered indoor ice rink. I remember feeling the challenge of the iciness of that ice or even the outdoor rinks that have the plastic layers under making the ice super smooth and extra slippery.

My daughter had a sledge which permits her to attend theses skating days. This however means that I need to be present at these occasions. You can’t stick the sledge on the school bus and sending her off to school. I cherish these moments however has the years progress, I find that it’s more of a socializing opportunity than a parental guidance required activity. The minute, she’s in her sledge, her classmates line up to take turn in pushing her on the ice as her coordination is not great enough to ensure that she will move smoothly forward.¬† This is an activity that they all look forward too even the school principal takes his turn. How blessed are we to have such a great community at our side and have children that are so enthusiastically accepting of my daughter’s need.

This year, I lucked out even more as my son grade will be attending at the same time. This means that I can spent some one on one time with him while his sister is being well cared for by her friends, peers and school staff.

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Happy Skating Day!

Dark Side of the Moon · Medical Parent · Professional Life of a Parent · School Challenges · Yellow Brick Road

Inclusivity – Do you know what it means?

This was our Christmas pageant yesterday. It was very lovely like most children Christmas pageant are.¬† Isn’t my daughter looking so happy in this picture? She’s the¬† Christmas Star.

Can anyone tell me if this picture represent being inclusive?

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My son’s class was just before my daughter’s group, it was just a fluke. They sang a song called : “Qui ne se ressemble pas s’assemble”, it loosely translates to:¬† “Who doesn’t look alike gathers”.¬† Seriously, if this isn’t the theme for inclusivity, it should be.

 

I’m not laying blame on anyone and I seriously doubt that it was intentional but my MommaBear’s Heart was broken when I saw this.

My daughter is gloriously happy and oblivious that even in this semblance of inclusivity, she’s being excluded.¬† For some reason, this year, they didn’t get her on stage, I’m not privvy to why, I will be finding out however there’s way around that, if she can’t be on stage, you can always bring the other or some of the other students to her level.¬† This would be akin of having one child playing outside of the sandbox and saying that this child is included in play with the other children in the sandbox.

The stage isn’t accessible but even if my daughter can’t walk, it doesn’t meant that she can move herself up the stairs, someone bring her the wheelchair up to the stage or have her sit on the stage and she can get herself back into it. This can all be done with regular supervision. Even easier would be to bring a few children or the class down to her level.

It’s important especially even more so for the school to be inclusive as this set the example for inclusivity in our children.¬† We need to empathize with our children, so they¬† learn to empathize with their peers. We need them to actively include all children and not make it a token effort.¬† Reaching out to former teachers and the family is a sure way to ensure, when you are unsure, that you are actively including the child.

 

Medical Parent · Professional Life of a Parent · School Challenges · Yellow Brick Road

School and Communication.

We all know that feeling of banging our head against a wall. I know that I repeat myself when I communicate with the school.

The main characters never change but whenever a new Educational Assistance comes into play whether it’s a staff reshuffling, vacation or sick days. It’s starts a whole slew of re-communication.¬† I’m not sure where the breakdown is, when I speak with the Principal and the Resource Teacher, they confirm this information and cannot explain why it’s not followed.¬† The information gets lost unless some black hole has been created even if it’s carefully documented in my daughter’s chart.

The latest, I don’t know how many time we’ve had this conversation but they have been keeping my daughter in at recess to get her to use her walker. I know that she’s suppose to do her walker everyday but recess is a crucial. Recess offers cognitive, social, emotional, and physical benefits that is often undervalued. Recess is unique from, and a complement to, physical education‚ÄĒnot a substitute for it.¬† It’s not only a mental break but a chance for children to freely be¬†¬†themselves in a safe environments.

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Sunlight is crucial for children, it’s brings in many benefits included the¬† much needed vitamin D. Florence Nightingale, the pioneer of modern nursing considered sunlight vital in providing a healthy environment for the sick. Wouldn’t it stand to reason that this would also apply to the healthy individual?

I am very grateful for this age of communication and community, I am grateful that I can work with the school and that my child’s need are taken seriously.

 

Dark Side of the Moon · Medical Parent · Professional Life of a Parent · School Challenges · Yellow Brick Road

Influenza B, Our Flying Monkey

Living in Canada, means that from November to April, we have¬† flu season.¬† For some families, this doesn’t mean much but a few missed days of school or work through out the winter but for many other families, the flu means complications and heartbreak. The more common complication from the flu can include bacterial pneumonia, ear infections, sinus infections, and worsening of chronic medical conditions, such as congestive heart failure, asthma, or diabetes. However as medical research progress, there’s a few disease (genetic and non-genetic) that can be triggered and/or aggravated by influenza such as in our case with acute necrotizing encephalopathy but there’s risk of encephalitis in itself (more at:¬†https://www.encephalitis.info/ ) . Other complication of the flu¬†include stroke, focal neurologic deficits, Guillain-Barr√© syndrome, acute disseminated encephalomyelitis, and transverse myelitis. The flu can change your life in a matter of seconds, it causes brain injury.

Are you surprised? Brain injury is  often  thought to be related to sport accident, vehicular accident and other physical trauma unfortunately we cannot even see the flu and can potentially prevent it but it can cause brain injury.  Remember that the flu is capable of great devastation, remember SARS in 2003 and the swine flu in 2009 and you can also see it through out history.

You cannot escape the flu¬† as influenza spreads around the world in a yearly outbreak,, resulting in about three to five million cases of severe illness and about 250,000 to 500,000 deaths worldwide.¬† Yes, you’ve read those numbers right something that you think cannot happen to you or a healthy child while death occurs mostly in the young, the old and those with other health problems there’s healthy individuals and individual with underlying diagnosed conditions that also succumb.¬† Death is devastating, there’s no redo and there’s no potential for any human to recover from that. You can find flu horror stories at https://fighttheflufoundation.org/ .¬†¬†In the Northern and Southern parts of the world, outbreaks occur mainly in winter while in areas around the equator outbreaks may occur at any time of the year.¬† You cannot escape influenza on Earth, that is.

There are two main types of influenza: A¬† and B. Influenza A is the big bad one as¬† more virulent and also tends to mutate more.¬† Influenza B, for its part, is an important disease in that it hits kids more than adults. Each year, the flu vaccine contains protection against two strains of influenza A and one strain of influenza B.¬† For those of you that know us, influenza B is Arden’s trigger to re-activate an acute necrotizing encephalopathy episode (what is ANE? visit www.aneinternational.org for more information).¬†¬†Each year, influenza strains mutate and re-emerge, infecting victims and triggering a new season.

Here’s a quick fact for our family and what another triggered episode could mean:¬†ANE is the 2nd in the mortality rates. Acute necrotizing encephalitis is a distinct neurological complication of influenza infection with reported mortality rates of 30%‚Äď40%, second only to historical descriptions of encephalitis lethargica (60%) among neurologic complications of influenza.

The flu in a third of cases do not present any symptoms hence you are carrying, shedding and infecting other individual without knowing.¬† If at least 75 per cent of the public were to be immunized,¬† a herd immunity would occur. That means that if most people were vaccinated, the odds of an unvaccinated person getting sick would be very low. While most of us feel healthy, the flu shot has benefits that extend beyond our own immune systems.¬†Not every flu season is bad and some year, you are lucky enough to avoid the symptoms of the flu. But it’s really hard to predict in advance how bad each flu season will be ‚ÄĒ and the only way to try to protect the most vulnerable in any flu season is for as many people as possible to get the shot. A flu shot is an easy way to hedge your bet ‚ÄĒ and protect the people around you, even strangers ‚ÄĒ against a bad season. Remember every strangers is someone’s loved one.

Just like the wicked witch and the flying monkeys, you never know when Influenza will strike and if you will be thrown off a cliff like the Tin Man or dissembled like the scarecrow so protect your family, your loved one and the friends, you haven’t met yet. Who will you be protecting this flu season?

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