Tag: accessibility

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Wear Red

It’s National AccessAbility Week (NAAW) 2024, May 26-June 1 and is a nationwide week of recognition that celebrates the many social, economic and cultural achievements of persons with disabilities. The theme for this year is: “Forward Together: Accessibility and Inclusion for All”. Then there’s the Red Shirt Day, this is an Easter Seals initiative and was first celebrated in 2019. It takes place on the Wednesday of NAAW each year. Red Shirt Day for accessibility and inclusion is a day when people across Canada come together and wear red to create a visible display of solidarity to show their support for disabled people and their families, celebrate the achievements of disabled Canadians and to pledge their commitment to help create a fully accessible and inclusive society.

This is all wonderful and we so appreciate this nationwide week of recognition. But we are not living in a perfect world and sometimes, more then not, this world can be cruel, discriminating, judgmental and uncaring. Accessibility and inclusion are for the most part not at the forefront of our society. We can say this because Lauren as been the recipient of such injustices on many occasions. The minute Lauren steps foot outside our door, or should I say, ‘the wheels of her wheelchair’; then the reality of just how inaccessible and non-inclusive our society and system really are. And this is why we decide on this particular Wednesday, to NOT wear red, in recognition of this injustice to disabled persons. The theme for this year; “Forward Together: Accessibility and Inclusion for All”, sounds great if it were only true.

In this blog I will certainly give praise and applause where it is do but I will also give you some astounding and shocking illustrations of just some of the injustices that we have encountered during Lauren’s years of struggling with this disability. I was just about to disregard this whole blog and throw it in the garbage. I thought, ‘what’s the point?” I have advocated for years and it seems I get nowhere; only exhausted and frustrated. But this will be my last and final blog on this topic, I’m tired and rather then putting my energy into a fight that I know I will never win; I will put my energy into giving Lauren the best life that I can, in spite of everything else.

I will list the non-profits and organizations that we are so thankful for and have helped us to make Lauren’s life just a little bit easier. I cannot elaborate on these because it would take forever. But we are so thankful for: Easter Seals, CNIB, APSEA, Rainbow Riders, The Shriners Children’s Hospital and The Children’s Wish Foundation.

But, sad to say I could write a book on the lack of accessibility and inclusion within our own province and society of NL. I will elaborate on just a few, just to give you an idea of what we deal with on a daily basis.

One very important issue would be accessible public washrooms. You would be amazed at the number of washrooms that are ‘not’ accessible, to a point where, if Lauren needed to use the washroom, then we would have to take her home or take her to another establishment that provided an accessible washroom that she could use. It is appalling to me, in 2024 that we still are dealing with this issue; sometimes it’s easier to find an “Outhouse”.

Then there’s parking!! OMG!! Yes you may find the ‘limited’ blue handicap parking spaces that are so misused it is shameful. One example, if I am driving our van and Lauren is ‘not’ in the van; that doesn’t give me the right to park in the blue zones just because I have the sign in my van window. I will park in a regular parking space. I could go on and on with examples of parking incidents but one is sufficient to make my point.

A very important violation of Lauren’s rights to accessibility and inclusion and is very near to our hearts are community and school playgrounds. The closest that Lauren can access her school playground is, she can get to the gate/entrance. When outside play is supposed to be a big part of our children’s curriculum; then where is Lauren supposed to play? The Dept. of Education puts absolutely no thought into inclusion and accessibility when designing playgrounds for ALL children. To my knowledge there is not a school playground in this province that is totally accessible. Very sad!

Many organizations, clubs, associations, leagues or specific groups are not at all accommodating if you have a disability. One such club in particular, knowingly discriminated against Lauren because she was disabled and offered us $2500(which we did not accept) to keep quiet. I have the written proof of this transaction but we could not bring a lawsuit against them because we didn’t have the financial means to do so. We had no choice but to cut all ties, communication and correspondence because of the immense about of stress that the whole situation brought into our lives.

As any parent would, no matter the ability or disability of your child; you want only the best for them. But when you have a child that is not on the ‘normal scale” of what society defines as “normal”, then you are in for a not so pleasant journey. You will be confronted with many obstacles, hurdles, roadblocks and barriers that you would have never otherwise encountered.

We will wear red everyday for our precious Lauren, 365 days a year!

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Accessible and Inclusive

Two words that really weren’t even in our (Lisa and me) vocabulary before we were blessed with our little angel Lauren. Little did we know just how well known these two words would become a part of our everyday life. And certainly not in a positive way but in a fight for your rights kind of way.

Let’s begin by defining what each of these words really mean, what they imply. “Disability inclusion means understanding the relationship between the way people function and how they participate in society, and making sure everybody has the same opportunities to participate in every aspect of life to the best of their abilities and desires.” While accessible means, “ a person with a disability is afforded the opportunity to acquire the same information, engage in the same interactions, and enjoy the same services as a person without a disability in an equally effective and equally integrated manner, with substantially equivalent ease of use”. Those two words would change the world for so many disabled persons if only they were put into practice.

Having a child with a disability opens up a whole new world of challenges that we never knew existed before. Ever since Lauren was diagnosed with spastic quadriplegic cerebral palsy, we have come face to face with the many obstacles that she will have to face; not because of her disability but the roadblocks that society and the world has placed in front of her. Roadblocks that make it near impossible for her to consider her world neither inclusive nor accessible.

They say a picture tells a thousand words. So let me paint you a picture. A little girl sits anxiously in her wheelchair at the entrance of her school playground, while the ‘normal’ kids run freely through the sea of pea stone that covers the floor of the whole playground. She sits there knowing that it would be impossible for her to maneuver her wheelchair through this sinking sea of stone. Then she thinks, even if I could get pass this gate, then what?? She realized that there’s not one piece of equipment that is accessible. Someone had forgotten about those two words, accessible and inclusive, while making plans for her school playground. After all, it’s her playground too! Isn’t it? So she turns around and leaves…

I could paint pictures on top of pictures of examples where Lauren was unfairly and unjustly misjudged because of her being in a wheelchair, enough to fill an art gallery. One assumption that I must mention; that being, she’s in a wheelchair, therefore she must be delayed mentally. The only person that is mentally delayed is someone who thinks this way. Lauren is one of the smartest little girls I have ever met; she could teach the wisest among us a thing or two.

I won’t elaborate any further, there’s just no need. I think you get my point. If we are going to have an inclusive and accessible society then we have a lot of work to do. But in order to change our world, we must put those in a wheelchair and with other disabilities in the forefront, not on the backseat. Maybe ‘walk’ a mile in their shoes. It’s then we will see change; accessible and inclusive will become a normal part of all our lives, none excluded!

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“Battered n’ Worn”

I have recently completed a painting called, ‘Battered n’ Worn’ (view on my Facebook Page: ‘Harris’ Artistic Designs’). It depicts a scene of an old, weather beaten shed and an overturned ‘punt’ that had seen better days. And the boisterous sea just uncaringly raging in the background. While I was engrossed in the actual painting of the scene itself, I really didn’t give much thought to what I would name the painting or what the painting was actually trying to say to me; not until it was competed! And then I stepped back and viewed it from a distance, it really told the story of my life and how I was actually feeling right at that moment. I had painted my life and it was ‘Battered n’ Worn’.

I have fought this crippling, disabling sea of depression and anxiety for far too long and it was starting to show. That along with ALL of the other winds and weather, had left me battered and worn. I was and is feeling much like that deserted, weather beaten shed; ready to crumble if I had to withstand just one more storm. How much can one withstand before the storms of life just leave you battered and worn; before the shed can take no more and just eventually crumbles beneath the beatings of the storms of it’s life.

If the only battle I had to fight was for my mental health, then maybe I could withstand that. But when the storms of life, and they are many, come beating you down and the winds are taking you off your feet, the rain as saturated your skin, right to the bones. The cold, cold air as left you numb, the raging sea is pulling you down into it’s clutches and you are drowning, gasping, gasping, gasping for air.

But you cannot keep a good ma down, no matter what others may think or say about you; you forgive and move on. You get up and dust yourself off, and we have had to do this many a times, and keep moving on.

One such battle that we have fought and I believe now is the time to let the world know how Lauren was discriminated against by Skate Canada, Skate NL and the CBNSC. I will give them the benefit of the doubt that it may not have been intentional but as defined by Human Rights: ‘Intention to discriminate is not a requirement to a finding of discrimination’. The full story can be found on our website: www.harrislisa72.com called, ‘I Want To Skate Like ‘Bruddy”. But the story doesn’t end there. I filed a complaint with the Human Rights Commission and won the right to file a ‘formal complint’ against Skate Canada NL. This was no easy journey, filled with anxiety, fear and intimidation. You see, Skate Canada (on behalf of Skate NL and CBNSC) hired a lawyer to fight their battles (an intimidation tactic I’m sure, hoping we would back off, not a chance). I followed through with the Human Rights procedure in settling this injustice.

This is what we were offered to keep our mouths shut and not proceed any further. Sadly to say, we could not proceed any further because we did not have the money to obtain legal counsel of our own and I could not fight anymore. But this is what we were offered and I am quoting Skate Canada’s lawyer, ‘My client is prepared to pay the sum of $2000.00 in settlement of this matter. These funds would be paid in exchange for a release which acknowledges no admission of liability on the part of my client. A condition of the proposed settlement is a confidentiality agreement. This proposal would not see the provision of an apology on the part of my client’. Obviously we did not accept the ‘bribe’ and because we really could not pay for a lawyer, we had to withdraw the complaint.

Did we lose? Not at all. First of all we did pass the requirements and was awarded an ‘Official Complaint with the Human Rights Commission’. That was the first hurdle and we leaped that one, without any problem. We knew we had a legitimate complaint. And although we had no admission of guilt on either of the three clubs involved; we ourselves knew by their actions of hiring a lawyer and offering money for a confidentiality agreement, that we had won.

I write this because it is not Lauren’s Cerebral Palsy that we are fighting against but an everyday fight for her rights as an equal, inclusive and accepted little girl that needs to live a happy life, in spite of the injustices, the stigma, the unfairness and lack of compassion that is still prevalent in our so-called ‘Society’ today. And this is just one example of what we have to deal with on a day to day basis. And yet we have to stay strong because the challenges that come with Cerebral Palsy alone is enough to ‘break’ any man or woman!

So today as battered and worn has we may feel, we will fix up that old shed and polish ourselves off and lift our heads high and be proud parents, that want nothing more then for their children to have the best life possible; against all odds. And we will not give up the fight, we are going to brush ourselves off and start again. It’s not a choice, we have to do it, if we are going to survive the raging storms in our  lives!

 

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Back To School Disaster

Have you ever felt beaten down; well I feel beaten down today. Ever since our child came into the world, we’ve been like any other parent and want nothing but the best for her. But that best is so obstructed by so many different means. And sadly to say, it’s only parents of special children that understand.

Excuse my expression, but it best sums  it  up, “You are damned if you do and you’re damned if you don’t”. I have advocated for disabled children on so many levels, it certainly doesn’t win you any popularity contest. But I’m not in this for the prestige or the social status. In reality, people look at you, as if you are committing a crime. Dare not fight for equal rights, all inclusion, accessibility, policy change or disturb the comfort zone of the ‘normal child’.

I am so amazed at our ‘all informed society”; that kids today don’t know what a wheelchair is. If parents could just take a moment and educate their children that we are all different, even if we don’t have a disability (a one we can’t see anyway). And different is not a bad thing, it’s okay to be different. For those who don’t know how to explain what a wheelchair is, I will do it for you. A wheelchair is a chair that has wheels that allows a person that has legs that don’t work because their brain is damaged and can’t tell their legs to move. Therefore they require a wheelchair to provide mobility (allows them to get from point A to point B) so they can move around independently. Having legs that don’t work is no different then someone having eyes that don’t work properly and therefore they have to wear glasses to see. Or maybe someone has ears that cannot properly hear and thus they have to wear hearing aids in their ears to hear. Because you have a disability doesn’t mean you have a intellectual disability; I’ve met people standing on two legs with very little intellect. It’s not rocket science, it’s simple; diversity is what makes us unique not defected.

Again this week, that ugly word came up again, policy, don’t get me wrong policy is great if it works; whether it’s our health care system, education system or legal system. But trying to adapt and adjust a five year old little girl with CEREBRAL PALSY into the school system that is bombarded by policy. WE can’t do this because that’s our policy, we can’t do that because that’s our policy; then to hell with policy. If it’s not working, and obviously it’s not, then it’s time for some change or a little tweaking. If this little girl is forced into an environment that she sees as frightening, scary and overwhelming and CP just intensifies these emotions. Then certainly our school system can adapt and adjust to a little change in policy to accommodate a little child, for what’s best for her; not the system. After all aren’t we living in an all inclusive society? So let’s protect our children, not the system. And for that to be done in “a nurturing, supportive, INCLUSIVE environment where all children are challenged and valued”. This week my thoughts have been challenged and disturbed to the cop out in order to save one from having to deal with conflicts to ‘policy’.

In order for this little girl to adjust properly, due to her CP, requires her to do it gradually with a parent or someone she is totally comfortable with, present to reassure her that this is a safe environment. This will only happen when she is introduced on HER terms; not the schools, not the unfamiliar team and certainly not the policy. Once she is eased into the environment, the parent can gradually exit the building and she can become the independent, intelligent and happy child that we know she was and is. If the school is not willing to make these adjustments, then this little girl will be having a very short school year. And only those who can help are the ones who right now strictly enforce policy that obviously requires leniency in practice.

For the protection of the school and child; names have been withheld.

 

 

 

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Lauren’s Wish

It’s summer; warm refreshing days, long evenings, free time to play, children running, jumping, skipping, swimming. Enjoying all that life has to offer with no expectations, just pure freedom.  And for children that’s exactly what it should be. They deserve nothing but the best, free of the responsibilities and cares that we as adults have to undertake as part of life.

For a few children this is not necessarily the case. The things that most parents just take for granted ( I’m not blaming them) we pray everyday for Lauren. Cerebral Palsy as stolen so much from her. But we try so desperately to give her a life of hope, normalcy, play and to explore the world as she sees it.

The older Lauren gets the more we realize that Lauren as so many obstacles to overcome, not just from her illness but also from society as a whole.  From getting from point A to point B requires our assistance. Accessibility will always be a struggle, because not everywhere you go is wheelchair accessible. I have been an advocate, on Lauren’s behalf, to make our space in this world a little more accessible. Surprisingly enough and sadly, not everyone are too anxious to conform to accessibility. Then we are experiencing the ugliness of inclusion; not always do we find people/organizations with open arms to include Lauren as an equal member of society. Sometimes being all inclusive turns out to be quite the opposite.  But again, I will be Lauren’s advocate and make sure that she feels included. Just  because her legs aren’t working and she as to use a wheelchair; makes her no different then if a child is wearing eyeglasses to see or hearing aids to hear. All inclusive means just that; ALL inclusive, none left out.

We are not in denial, everyday is a constant reminder of Lauren’s challenges but that doesn’t mean we don’t want the best for her but in order for that to happen we may have to overcome many obstacles, challenges, struggles, stigma, ignorance and false hopes. We still have days when we wish Cerebral Palsy would just go away and leave us alone. To let Lauren just live a ‘normal’ life. We understand that everyone has their own struggles, hurts and pain but I’m writing about Lauren’s today. Sometimes I wonder will we ever get to a point of acceptance; I don’t think so, not as of today anyway.

Lauren’s last words before falling to sleep last night was, “I wish I could walk like Bruddy.” What do you say? How do you say it? Lauren ‘may’ never walk like Bruddy. We have already been told that Lauren will always need the assistance of a wheelchair, walker and aids. Do we accept the expertise advice of the medical field? To be honest, I don’t know anymore!

If we don’t, we have one option left. And that would be a miracle from God Himself. Would that be possible? I pray it would be. Yesterday the statement was going over and over in my head, ‘If Jesus could do it then; He can do it now.’ Well, here she is Lord, she’s all yours. If you want her to walk, do your work! But if not, please help us to accept your will and please carry her over the many bumpy roads she is going to come in contact with. At those times may you carry her…..

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Lauren’s Blog

Hi, my name is Lauren Kennedy Tucker and I have spastic quadriplegia cerebral palsy. I am five years old, ‘I’m not a baby anymore; I’m a little girl now.’ I really want to walk and ‘do it myself’ but when I was born the part of my brain that tells my muscles what to do was damaged. So when I want my legs to move, they don’t listen. And because of that my whole life is one challenge after another. Daddy is going to share with you some of those challenges and help you to make a little sense of why that makes my life a little more difficult. Because for me every aspect of my life is affected and I have to endure more pain, hurt, mobility issues, accessibility problems, inclusion, therapy, etc. then the average child will endure in a lifetime.

Don’t get me wrong, I still live a happy, loving and fulfilled life, in spite of my challenges. This is ‘my’ normal, it’s just that everyone else as to be enlightened, educated and introduced to my way of life. It’s not that I am different, it’s just that I sometimes have to do things a little differently than others. Maybe you have to wear glasses to see, I use a wheelchair to move. Because you wear glasses doesn’t mean you are different and should be excluded; then neither should I because I am in a wheelchair (for now).

My Daddy is a great advocate for person’s with a disability, mobility issues, vision issues and anything that would make our world a better place to live. He certainly believes in equality for everyone, no matter what. So I’m really lucky to have him on my side. Being an advocate certainly won’t win him any popularity contest but if it’s going to improve my quality of life then Daddy doesn’t mind because he always says, ‘It’s the squeaky wheel that gets the grease’. Both Mommy and Daddy are my greatest fans, I am so lucky to have them in my corner. And of course ‘Bruddy’ (Logan); I just love him to pieces!

Below is a list of some of the events, therapy, and important people people that are involved in my life:

Cerebral Palsy Clinics at The Janeway every 6 months.                                                     Physio Therapy                                                                                                                                       Occupational Therapy                                                                                                                        Speech Language Pathology                                                                                                          CNIB Kim Hart, Vision Impairment                                                                                                Psychology                                                                                                                                                Inclusion Consulting                                                                                                                              Orthopedic Surgeon DR. Deane                                                                                                      Neurologist Dr. Buckley                                                                                                                       Developmental Pediatrician Dr. Doyle                                                                                         Pediatrician Dr. Aktar                                                                                                                           Ophthalmologist Dr. Bramwell

Wow. that makes me feel like I’m a very special person and well taken care of! Daddy , you forgot to mention that I frequently visit the Children’s Shriners Hospital in Montreal for assessments. I’ve been to Montreal four times already to be assessed for a Rhizothomy surgery which could release some of the spasticity in my muscles which would in turn help me to have a better chance of having some form of mobility. But up to this point I have not been a good candidate; but Mommy and Daddy are not giving up. We believe that eventually I will get this badly needed surgery. Dr. Farmer is going to keep his promise of doing his best to help me walk. But for now I have obstacles to contend with before I will even be considered for the rhizothomy surgery.

Because my disorder rendered me very spastic, in order to relieve some of the spasticity I  first began having botox injections through my groin. Botox is known to paralyze part of the muscle which in turn releases some of the spasticity. This is only a band aid remedy and would only last for short periods of time, only a few months at most. I had four procedures done while put to sleep but then the effects of the botox didn’t work anymore and the procedure was discontinued.

Right now, I have two dislocated hips and still waiting on surgery. If I were an adult with two dislocated hips; would I still be waiting on surgery? Daddy doesn’t understand the long wait, I was suppose to have the surgery done over a month ago but it got postponed and as of today we have no rescheduled appointment. I will have reconstructive osteotomy pelvic and hip surgeries done but at separate times. It would be too dangerous to do two of my hips at the same time. They will do one and then I will be in a hip spica cast (body cast). Then depending on how I am recovering; two or three weeks following I will have the second pelvic and hip surgery done and placed in a body cast for another 6-7 weeks, depending on the healing process. This is going to be very stressful and painful on us all but Mommy and Daddy are praying that God will be with us.

I am also diagnosed with epilepsy, my seizures seem to be under control somewhat since I’ve been on a new drug. Mommy and Daddy watch me day and night to make sure I’m not having a seizure. They are scared that having another seizure would do more damage to my brain; that would not be good.

There seems to be no end because in June I am scheduled to have strabismic surgery on one of my eyes. Dr. Bramwell is hoping that by correcting one eye will help correct the other. This is a visual defect in which one eye cannot focus with the other on an objective because of imbalance of the eye muscles. We are hoping this will help with my vision and the turn in my eyes. It seems nothing is for certain but we try to keep positive when things are so uncertain.

Once my hip surgeries are successful and healed, then there’s the surgery that Mommy and Daddy are so concerned about. It’s not guaranteed to work but it’s the only option we have right now of releasing some of the spasticity in my muscles especially around my hips because there still is a chance that if the muscles get too tight they can pull the hips out again and we have already been down that road and don’t want to go there again (I will have had 3 hip surgeries ). The next surgery would be to insert an intrathecal baclofen pump underneath the skin. Baclofen is a muscle relaxant medicine used to decrease spasticity. It will deliver the drug right to the spinal cord and release some of the spasticity.

It looks like a long road ahead but we will take it (try to) one day at a time. I know Mommy and Daddy are so exhausted and stressed; with the 24/7 care that I require, the constant trips to the Janeway, the worry about my surgeries, the expense of needed equipment (I am due for a new wheelchair and that’s like buying a used car) and lack of support, no available funding; all combine to make life a little overwhelmingand draining; both mentally. physically and financially. But God will make a way!

 

 

 

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Lauren’s Adventure to McDonalds (in her wheelchair)

When Lauren was diagnosed with cerebral palsy, little did we know what would be involved. From surgeries, botox injections, seizures, therapy, CP Clinics and the list goes on; it’s a never ending journey, always evolving. And that journey is not always on a smooth, straight road but many are the bumps, turns and potholes. But I would just like to elaborate on one such pothole that we’ve hit, many times and that being accessibility.

If you are not confined or dependent on a wheelchair or the person behind pushing the wheelchair, you probably have no idea what I’m talking about. You so innocently take your accessibility into a building, restaurant, house; all for granted. Many times I have wished I could  take the owner of a business, a public building, etc. on a journey in the day of a life of someone in a wheelchair. Maybe just sit “them” in a wheelchair and say, ” now go and let’s see how far you get. Their view of accessibility would drastically change and maybe look at it in an whole new light. And sometimes that’s what it would take.

I’m going to zone in on one business in particular and come for a ride with us in Lauren’s wheelchair.

It was our first visit to McDonalds in Bay Roberts ( I love freedom of speech) when we moved here two years ago. We pulled into the parking lot and searched for the handicap parking spaces. Oops! not spaces; there was only one and that one was occupied. So I searched again for two regular parking spaces that could accommodate our side entry van. There it was, at the end of the parking lot but at least it would give us space to exit the van using the side entry ramp. Wow, nothing to that (I thought)!

Next we maneuvered our way through the parking lot and hit the curb sidewalk that we crossed, to only be faced with crossing the drive-thru entrance. A little dangerous for someone in a wheelchair or not. Then we got to the front door with no powered push button opener and then the second door, inside a porch smaller then the wheelchair; I was stressed to the max. Once inside I looked around for a wheelchair table, there was one but it was occupied. By this time I was so frustrated that I just wanted to leave but Miss Lauren was bent on getting her “happy” meal. So I obliged her and we sat in an aisle table. Then she wanted to go to the bathroom, I need not say more.

Then it was time to exit the restaurant, where would I start? But in order to get out of there I had to start my trek to get back to the van. Once I so anxiously got to the van; what to my wandering eyes should appear but another vehicle parked a foot from our entrance to the van. This made it impossible for us to access our van. What do we do? Wait, until whoever owned the vehicle to move, so we could pull out the ramp and enter the van. So we waited and waited…..

And that’s the story of our adventure to McDonalds in a wheelchair. And that’s when I became an advocate for accessibility (like I needed something else on my plate). Being an advocate certainly doesn’t win you any popularity contests, but that’s not why I do what I do. I do it to make change for the better, improve our society as an whole and to just make our world a better place to live for us “all”.

My advocacy began by making a phone call to the owner of McDonald’s , who listened to my concerns very attentively. I thought to myself, that was a little too easy. I was to learn later that I was right. He did tell me at that time that renovations were going to be done in the Fall and he would contact me for my input on accessibility.

The Fall came and construction began but no telephone call from the owner. So I thought, if changes were needed for accessibility, they would need to be implemented during construction, not after construction was complete. So I thought I would do the courteous thing and give him a call back to jog his memory on our past telephone conversation. I thought I must be talking to a different person, his professionalism just flew out the window. When it came to wheelchair accessibility he said, ” I will only do the “bare minimum” that is required to be considered accessible”. No regard, no compassion, no thought for those confined to a wheelchair; it was all business.

After that conversation I thought, okay, where do I go from here? I was more determined then ever. I went straight to the Government department responsible for enforcing the accessibility code/requirements. I told the department of my concerns and frustrations and they were totally on board. The next day they had an inspector sent out and several building code issues were enforced pertaining to accessibility. And for that I am, on behalf of my four year old daughter and all those who require proper accessibility, I say thank you. We now have push button door openers. Without advocating; these door openers were not in the plans and would not have been installed.

And to the owner of McDonald’s in Bay Robert’s (and out of courtesy I won’t give your name) but I say, “Shame On You”! I hope you will never have to be confined to a wheelchair or anyone in your family: but if you were, then you just might “get it” and have a heart. By the way, the renovations are really nice! Congratulations!

 

 

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Writing- Therapy?

I’m reading a book by Benjamin Cox and in his book he says, “I am writing to save my life; it’s the only thing that helps, like therapy in a way.” I can totally relate to what he’s referring to. Ben is a recovering addict; I’m a recovering mental ill person. Just like Ben, we will have to fight our “demons” for the rest of our lives.

Every day for me is still a battle/struggle. Life doesn’t come by so easily has it use to. Even the  little things, sometimes seem so overwhelming. Just like Ben, I will always be a work in progress. There will be days when I don’t feel so well but I do have things in place that help me to cope. And writing my thoughts on paper, I find really helps. Then sharing these thoughts on my blog makes me feel  like I am helping someone else who is suffering from their mental illness.

It seems like forever since I have written, but that’s because I have written but have not published in my blog. Sometimes my thoughts are too deep that they are not for public viewing. This  past week has really been a tough one. In spite of my illness, I still have so many battles to fight. All of which are triggers for my illness but fight I must; I don’t live in a bubble, life still has to move on.  One such battle is trying to obtain funding for Lauren.  We get no Government assistance; I have gone from Provincial to Federal with no hope in sight. Then accessibility and all inclusion battles have left me discouraged, drained and to a point of just giving up but I know I can’t; she’s depending on me.  Raising a child with a disability opens your eyes to an whole new different world; that only those who have experienced it can relate. A world and society that are not all that accepting has we hope to think they are.

I guess now I’m an advocate for both our disabilities; Major Depression and Anxiety Disorder and Lauren’s Cerebral Palsy. Neither of which our society has made it any easier to be accepted and included. There is a stigma attached to both and I’m sure that  Ben can certainly relate to; with him being a recovering addict.

I find writing to be an outlet. A place to free your mind of all it’s thought. A means to find an escape, even if it’s only for a few moments. Like Ben, if it’s going to save my life then I will write, write write!

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Rants & CP

To rant, to get heard, to be heard; for your voice to reach the ears of the people who really need to hear what you have to say. How do I do that? The question remains and I don’t know where to start. But I have to start here; I have to start somewhere. Someone has to listen.

Before we had children, I would never have even contemplated or even recognize the issues that I am about to address. But since we were blessed with two beautiful children, I now have reason and purpose to make their world a better place to live. And thus I begin with my frustrated and feeling of hopeless concerns. But I will voice them none the less. Whether they fall on deaf ears or not; I will have done my part.

As parents of a special needs child we are exhausted, not complaining but stating a fact. It’s taken a tole on us in every area of our lives; financially, mentally, emotionally, our marriage, our social life and family life. I am on long term disability(CPP) due to my illness and Lisa as had to take a leave of absence from her job due to high stress. We have only a limited amount of strength, endurance, and stability before we crush under the immense levels of stress. No one knows what’s involved unless they walk in our shoes. We need supports but they are very few. Any government programs for support; we have been denied. So what do we do? I have no idea! It’s so easy for well-wishers, and I thank them, to offer their prayers but sometimes faith without works is dead. I am so grateful for prayers but there still remains the reality of “what is”. Lauren requires 24/7 assistance. That means one of us as to be with her around the clock. Can our marriage survive this? I hope so! There is basically zero time for us as a couple. And that is so sad because we are falling apart. Lauren does attend a Daycare for three “part-time” days a week. That gives us a little break, but financially we can’t do more. We are human and doing everything possible to make our lives as “normal” as possible, but sometimes we fall beneath the load we carry. This is not a pity party but reality of what is.

For those of you who have not experienced life with a child who requires assistance to access a public building; you probably will never understand to the fullest extent of our frustration with accessibility. Our province as implemented an accessibility requirement for all public buildings with some exemptions (www.servicenl.gov.nl.ca). It as been my experience since our little girl who is four on March 31,2017; that these requirements are far from enforced. The frustration that we have entailed on trying to enter a building using a wheelchair is beyond my belief. It should be common courtesy for a business owner or any public building to provide wheelchair accessibility. And thus make us all feel like we belong, accepted, and welcomed. Let’s all do our part to make this world a better and more accessible place to live, with no exemptions. I have voiced my concerns to several business owners with minimal feedback. It’s not my intention to ruffle feathers but to open hearts.

This next issue is not even into existence yet and I’m frustrated/concerned already. Integration into the classroom; equality and equal opportunity for all students? For example, if a disabled child is qualified for a full time assistant, does that mean she will get that full time assistant? Definitely not! If Lauren qualifies for a full time assistant it’s her right to have one, but that’s not how the system works. I hope you can prove me wrong for her sake. But all too often a child coming into the classroom in a wheelchair is looked upon as having a physical disability and thus must be cognitively delayed as well and are often treated that way. It’s already been pointed out to us that Lauren as to get more acquainted to being in her wheelchair because that’s where she’s going to be for school. Well that is not where Lauren is going to spend her day; in her wheelchair. Right now Lauren mainly uses her “chair” for transportation purposes. If we are at the table, she is at the table in her highchair with us as a family. If we are on the floor; Lauren is on the floor with us. She also has a charries chair for when she’s at her play table. There is a variety of options that she can avail of rather than confined to a wheelchair. We are so thankful for her Daycare, she is treated no different then any of the other kids and is much included into whatever activities the other children are involved in. And this is the way it’s going to be in school, if this is not the case, then Daddy will be going to school with her to make sure she gets every opportunity that she deserves. And maybe the media can come to school with Daddy; that would be great! All too often a child requiring a student assistant doesn’t always get the full attention of that assistant. Much too often the student assistant time is spread out over several students. What happens if one of those students need to go to the washroom and there is no assistant available? They wait and sometimes run out of times. When other kids are having playtime on the floor, that child is left in their wheelchair. Lauren will not be left in her chair; she is to be treated like the rest of the children and will play on the floor. As with most activities that she can do, she will do! Lauren may have a physical disabilitybut she does not have a cognitive disability and will be treated as so.

The Janeway as a children’s hospital. First of all, what we see through the media does not always paint a true picture. Much too often the media only show you what they want you to see.Before we had children, my view of the Janeway was only inspired by what the media portrayed and that was glamorous. Now that I have an inside scoop, things look so much different. Compared to other children’s hospitals we fail to meet the mark, we fall short of what our children deserve. The environment itself certainly not all that child friendly. A sticker here and a mural there; ever so often. If you just walk through the hospital it won’t take long to view the somewhat dilapidated structure. We fail to meet up to the high standards that other hospitals have taken. One small area, just as an example, I have noticed is the recreation room. The toys and contents are from Noah’s Ark: a visit to Toys R’Us would be a welcomed sight. This to me would seem like such a basic need and affordable considering all the fundraising, especially through the Janeway Telethon. It would be interesting to see where the money is going. Lauren is now in need of a walker, you would think the Janeway would have such needed equipment in abundance. Sadly to say, no that is not the case. We have run into this problem time and time again. We were told the reason is there is limited space to store such needed equipment; poor planning on someones part! Who suffers? Our children. Our thanks go out to the outstanding doctors, specialist, etc. for their continued support. But to be considered, nothing but the best for our children; we have not yet reached our goal.

Lauren requires much needed equipment; none of which is available to us through government funding, nor through the Janeway Hospital. All her needs can only be met through fundraising. To me this does nothing for your self esteem, self worth, or self confidence. But you do what you have to for your children. We have applied to several government support programs; only to be denied. And therefore the only way to purchase equipment is through fundraising, family and friends support. And for that we will be forever grateful.

So you see, nothing comes easy. Every challenge is a battle. If you don’t fight for your rights; you have none. There are days when you get so tired of fighting but fight you must! And as long has there is breath in this body; I will fight for Lauren and Logan. I am not speaking negatively to any of these issues that concern me but I speak realistically to the way things are. I wish we never had to fight any battles, we are already exhausted from everyday challenges of raising a special child. I know the only people that will fully “get” what I’m saying are parents that share our common bond. If you are reading this and don’t get it; then be thankful for the life you have and may you never have to “walk” in Lauren’s shoes.