Archive for the ‘Social Commentary’ Category

There’s a common theme in conversations I’ve shared with other parents of children with disabilities. We often talk about our experiences and the challenges we’ve faced finding information, resources or services for our children. One mother posed the question…”Why the secrets?” I knew exactly what she meant. Sometimes it seems as though information that should be easily available, is instead protected like it’s the last can of food amongst a starving community.  It’s not the first time this question has come my way. It also wasn’t asked with the expectation I should have an answer.  It was more a common ground with a hint of sarcasm and frustration.  Read the rest of this entry »

Something was bugging me today. I received an email from someone whose specializes in software, hardware, and more for people with disabilities. Normally, I value what this person has to say, but today, I had to stop and re-evaluate whether I’ve been putting too much faith in them, or whether I’ve been a victim of great marketing.

 

So here’s the skinny. The email was about what makes a good IPad app for people with special needs. Of course, the email was also promoting the apps this individual makes. Now here’s my problem. It suggested that parent bloggers, who have children with special needs and had success using different apps, don’t have enough expertise in special needs to be writing about it.  Read the rest of this entry »

If someone was to ask me “What is the one difference in raising a child with disabilities?” I would have to say that I’m always fighting for my child needs. There is never a time where I’m not being an advocate for her. I fight for her medical concerns, need for therapies, funding, equipment, accessibility, etc. For parents of children without disabilities, these things aren’t usually a concern.

 

Right now I’m fighting for my child to have accessible transportation to school. This battle has been building for a long time and I’m reaching my point of “That’s it, I’ve had enough.” By that I mean my patience has run out and I’m bringing in reinforcements. Prior to enrolling my child in her school, I was assured there would be an accessible school bus available for her. Years have passed and still no bus. I find myself questioning if the School District doesn’t value my child’s education the same as other children. Read the rest of this entry »

For years I have been a diehard fan of Survivor. Admittedly it has tapered off but it’s interesting to watch the dynamics of people from different walks of life, communing in surroundings unfamiliar. As the season goes on, I always find myself routing for the nice guy or girl that works hard, plays strategic, respectful and smart. I cheer them on hoping they’ll conquer all. Still there is always a villain. The person you cannot stand. The very thought of them potentially winning the grand prize and title of “Soul Survivor” would send a feeling of disgust to your core. This week’s episode revealed the person that I would least like to win and it angered me so much I wanted to reach through the screen and cuff him upside the head. Read the rest of this entry »

There was a time when saying “I’m seeing my therapist” wasn’t spoken for fear you’d be judged. Later those same words would come to be a fad, a hip thing to be doing, a norm in society.  Whether it’s solving marital problems, childhood issues or trauma, to gaining motor skills, speech, or cognitive function, therapy became necessary for so many people. The list of therapy possibilities is endless. Deciding what will work for you or your child is a huge decision and often costly. As a parent of a child with special needs, therapy is obviously something needed in our house in so many ways.  The challenge I have is getting it. 

 

In BC, once a child goes into the school system therapy becomes “consult” based.  Essentially that means your child doesn’t get hands on therapy from the therapist.  Instead they view the child in the school setting and make recommendations to the support staff.  The onus then falls on the support worker or other team members to make it happen.  The reality is they have very little resources or time to make it happen. Our classrooms are overcrowded, support staff is minimal and the schools are constantly experiencing cut backs.  The parent meanwhile gets very little direction on how to proceed at home to support their child’s needs. 

  Read the rest of this entry »

This morning, not quite awake yet, I turned on Global BC’s morning news.  As they talked about the various events, I don’t think I paid much attention.  I was just too tired and struggling to wake up.  Suddenly “Bam!” a story reported by Catherine Pope catches my attention with horror.  It was not the freak storms, the London riots, or the roller coaster ride of the economy.  All of those can certainly catch your attention, but this was a story that hit my heart about a young girl who will be turning 19 soon.

 

For most of us turning 19 can be an exciting time and the official transition into adulthood.  For Christina Bartels and her mother, this will be terrifying.  Christina has the mental capacity of a 2 year old.  She is deaf and blind.  She has lived in a facility full time receiving one on one care for some time now.  She is used to those who have cared for her and learned her signs of when she is getting sick, etc.  Next week her whole world will change.

 

At 19, Christina becomes an adult, despite her mental capacity of a child.  In our governments eyes, that means she has to be moved to an adult facility.  She will only have nursing care till 5pm.  Imagine for a minute, leaving your two year old without one on one care after 5 pm.  Does that sound at all scary to you?  It does to me.  A two year old that is also deaf and blind being without one on one care is even more horrifying to think of.  

 

To me this was another example of how persons with disabilities and their families are not clearly consulted, understood, appreciated or granted proper care.  Christina does not eat or take her medications around strangers and this transition will not be an easy one.  For her mother, she is afraid her child will die without the care she needs.  A fear any mother of a child with disabilities has had.  

 

This forced transition also means Christina Bartels will no longer be under the care of Ministry of Children and Families.  Her file will be moved to Community Living BC.  I can tell  you from experience, whenever your file is moved, for a mother you have many concerns and unknowns on how it will affect your family.  Christina’s mother is clearly feeling the same and has a right to fear what lies ahead. 

 

When the reporter Catherine Pope tried to reach the Minister for CLBC Harry Bloy for comment, he was not available.  Hmmmm really?  Even if he did comment, it would probably only be enough to satisfy the public for now but not an actual understanding of what is happening.  In the best interest of this family and others like it, I could only wish the Minister would take a good, long look at this family and answer these questions: 

 

“Could you leave your 2 year old child with medical needs without care from 5pm till morning?” 

“Would you want your child’s needs to be considered before completely uprooting them from the safety of the life they’ve known?”

 

Does anyone else out there find this as ridiculous and alarming as I do?  Is this really the best our government can do?  Forcing this transition sounds like it’s more in the governments best interest than the families.  Shouldn’t it be up to the families of the person with disabilities to decide what facility is best for their love one? 

 

See Global BC News  - Fearful transition to adult care

 

One of my favourite series “Lost” came to my mind  today.  That show had me hooked with the twists and turns, adventure, and even a little romance.  A particular episode came to mind between characters “Hugo and John Locke”.  Hugo was a just a nice guy that you want to get to know.  As warped as “John Locke’s” character became, it was this episode where he parked in a regular parking space with his adapted vehicle that I remember most.  I thought, as though this was real life characters, “Why on earth would he do such a thing”?  Later it was clear and hit home with me. Sometimes, like John Locke, you don’t want to accept anything different from what most consider the norm.  Anyway, so there he was, parked next to “Hugo’s” big yellow hummer and he couldn’t get his side ramp down to get his wheelchair in.  He snaps, looses it completely.  Most people probably saw that and thought as I did initially, totally his own fault for parking there in the first place.  Here’s the thing though;  it happens even when you’re parked in a disability parking spot. 

 I have a side ramp vehicle and I don’t know how many times the person who has parked beside me hasn’t left me enough room to get the ramp down.  I used to leave them little pre-made notes that said something like “May a thousand ants infest your armpits”.  Not so nice but at the time I thought it might be effective.  Later I was given a more appropriate format to provide. It was certainly much more understanding and providing a polite learning experience for the other party.  The infested armpit one still makes me laugh but I have to admit the other is better. 

Today was one of those days where I parked in a corner disabled parking spot.  There was a no parking sign  marked for other drivers not to park next to this spot, and you guessed it, they did.  Perhaps they just thought “I’ll only be 15 minutes or so”.  Well, I wanted the armpit note.  I was so frustrated that someone could so blatantly ignore the no parking sign, just making their own spot and blocking my access.  For that moment, I pictured myself as “John Locke” just lowering my ramp over and over into the side of the other vehicle.  Of course that’s not the answer and lucky for him I’m not that fed up-yet. 

So I have to say “let’s be wheelistic” about this and offer a word to the wise. If you’re the other driver thinking, “I won’t be long”, think about the other person in that designated spot.  Think about how difficult it might be for them to have to wait in the rain, or with their child because they can’t get in their vehicle.  Maybe they have appointments to go to, medications due at home or family to see.  Know that their time is just as valuable and their right to get in and out of their vehicle without having to wait for you.  You never know if there is a John Locke alter ego just waiting for an excuse.

Have you ever felt like John Locke or are you the rushed parker?

(Wheel-ist-ic) Adj: awareness or acceptance of actual fact, real existence, or truth with relation to inclusion, accessibility and/or persons with disabilities.

Let’s Be Wheelisitic is a blog designed to open communication, share and create change through parenting, awareness, inclusion and advocacy. Over the years people have encouraged me to use my voice and experiences with my daughter to help others with or without disabilities, or parents of children with disabilities. This blog is my way of doing just that. I hope you will find this site enjoyable, educational, helpful, and rewarding.
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“I arise in the morning torn between a desire to improve the world and a desire to enjoy the world. This makes it hard to plan the day.” — E. B. White

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