Tag: government

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Wings To Fly

When Lauren was diagnosed with spastic quadriplegic cerebral palsy at the age of one, little did we realize just what we were about to encounter. Lauren is now six and the battle still rages. It’s not just about the actual struggles that we have to encounter with Lauren’s physical, psychological and emotional needs that are associated with cerebral palsy. But it’s also the strain that CP puts upon the whole family unit. It’s the financial strain and stress that it places on the parents to provide even the basic needs for a disabled child. It’s the worry of being able to provide adequate care when your limited resources are just not enough.

Lauren’s kindergarten year has been anything but smooth. It’s now April 2019 and she is just starting to readjust to being in school. Lauren as spent all Fall and Winter recovering from two hip reconstructive surgeries, it’s only now that she’s feeling much better. Her transition back into the classroom is going really well, as long as we take it slow and steady.

One of the more difficult challenges would be the financial burden it places on  us. For example, Lauren requires much needed equipment and aids in order to care for her properly and safely. But we don’t qualify for any Government assistance whatsoever. So anything Lauren requires, we have to find a way to purchase it and that would be through fundraising. And we as her parents should not have to depend on fundraising to meet her needs; Government funding should be available for all disabled children, not just a few. This is why we have advocated so diligently on her behalf because she and others like her deserve every opportunity that every other child avails of.

This is why we have advocated through every means available including; social media, television, radio, internet, and newspaper. This is one of my post that I published recently on social media:

I don’t consider myself a political person, I really didn’t have any reason or motivation to get involved. To be honest, I rarely voted. But I will certainly make my vote count in this election! And it certainly won’t be for the present party. Right now I have lots of reason and motivation to get involved. When our now, six year old little girl got diagnosed with spastic quadriplegic cerebral palsy, little did I know just how involved in politics I would have to be. I have advocated on her behalf, to every Government Department and Level available to me; with absolutely no success. All we needed was some respite care to help us with Lauren who needs 24/7 care, all we got was, ‘you don’t qualify’. Yet here we were two parent on disability, caring for a disabled child; who could be more qualified for assistance? But to this present day we have received no help, no funding, no nothing from a ‘Disabled Government’! We are so desperate for help in caring for Lauren but our present Government as just turned their backs on us but not just us but a six year old little girl who is so deserving of so much more. Shame on our present Government and present MHA who’s last correspondence to us was (and I’m quoting her), ‘Here’s some federal info-‘ Need I say any more! This post stirred up a lot of interest and public awareness of what parents of disabled children really need. Shortly thereafter CBC Here & Now and CBC Radio did amazing stories of our struggle and fight for Government support.

Another great need would be respite care, for which we qualify for none. And sad to say, ‘we are not the only parents that are struggling for the same basic needs’. We are taking care of Lauren 24/7, around the clock care. The toll this as had on us has her parents is both physically and mentally draining to the point where you are surviving, not living. This is no way for anyone to live, both our children deserve so much better but sad to say, ‘both suffer because our Government will not intervene’. If Government is not willing to listen and to make changes to our present system, then these helpless children from all across Newfoundland and Labrador, will be deprived of the proper care that they require and deserve.

Maybe what is needed is for all parents with disabled children, who are not able to financially provide  and care properly for their children due to lack of finances, is to drop our children off at the Premier’s Office and say, ‘Now you take care of them and you decide which ones should ‘fall through the cracks’ (direct quote from Premier Ball). And maybe the MHA could offer him some respite care. But the message needs to get out there, loud and clear, that we are not going anywhere and we will continue to advocate for our children (speaking for all parents in the same situation as we are) until we are heard.

The road that Lauren is travelling, is a road with many twists and turns; you never know what’s around the corner, it’s a road that never ends. Cerebral Palsy is so unpredictable and ever changing, each day brings with it new challenges and new road blocks. But Lauren is a Warrior Princess and will fight for what she needs. She is strong, courageous and brave and will overcome any obstacle that is put in her path.  She may not walk (right now) but she does have wings to fly!

 

 

 

 

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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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Stigma & Mental Illness

I have no idea where I come up with my blogs. You would think there were only a few issues to write about on the topic of mental illness. But they just keep flowing through my pencil; as fast as I can print on paper, the faster my brain tells me what to write. So hopefully I never get writer’s block.

I’ve eluded to stigma or stigmatized in several blogs but I think it deserves a post of its own. The stigma that surrounds mental illness is astounding and comes from all facets of life; even the person with a mental illness themselves.

Let’s begin by defining exactly what stigma is and its relation to mental health. Stigma is defined as “a mark of disgrace associated with a particular circumstance, quality or person”. For example; shame, disgrace, or humiliation. Stigma is a negative stereotype. Stigma is a reality for many people with a mental illness and “they report that how others judge them is one of their greatest barriers to a complete and satisfying life”.

The Canadian Mental Health Association stated that, “Mental illness can affect anybody, regardless of age, gender, culture, ethnicity or social class. But no matter who they are, people who have been diagnosed with a mental illness are all likely to experience stigma. Public attitudes and beliefs, often based on fear and misunderstanding, stereotype individuals with mental illness, exposing them to prejudice and discrimination. Stigma infects every issue surrounding mental illness, often with worse consequences than the illness itself. The World Health Organization declared stigma to be the single most important barrier to overcome in the community.”

Having said all of that, it’s time to get a little more personal and to express my own thoughts and experiences about stigma. Education and speaking out are two of the most important elements in breaking down the walls of stigma. For me personally I have well self-educated myself on the topic of stigma and my own mental illness. And I have most definitely spoken out and talked openly and publicly about my illness. I was guilty of stigmatizing myself because I had a mental illness. I was ashamed, afraid to go out in public or be around other people for fear of being looked down upon, belittled or looked upon as being different. But what I have come to realize is that we are all different, all unique and all have a mental illness (in one way or another); none of us are perfect. I now love sharing my story and talking about my mental illness, it as opened up an whole new world for me. Not an easy one but life is not always easy.

The Health Care System in this province is partially to blame for the stigma that surround this illness. From my own personal experience, the moment you walk in through the hospital doors, you feel different, you are treated different; you are stigmatized. The physiatric unit is usually isolated and in the basement or if not, the windows are locked shut with iron bars. And all units are locked down. A patient or a criminal? And here I was suffering from anxiety; what better way to push your anxiety through the roof. Our mental health system needs to be totally revamped. Is that going to happen anytime soon? I doubt it. The answer for now is to keep speaking out and let others be aware and become educated.

The media as played a role in the way mental illness is stigmatized. Often portraying someone with mental illness as being different or sometimes even dangerous. But I have also found that the media, especially today, are trying to break down the walls of stigma. For example, the Bell Aliant campaign; Lets Talk, has really educated and helped the general public to see mental illness in a new light. And this is what we need; more people talking openly about this issue.

Lastly, the Government of NL need to be held accountable. One very important way that the government itself can break down the walls of stigma is to totally demolish the Waterford Hospital. It screams; STIGIMA! And the building itself is falling down and delapitated. The halls have a ghostly aura about them. I remember when I was very ill and at the end of my resources, that I packed my bag, with the intention of being admitted; I didn’t know where else to turn. But sadly I was turned away because they said, “the Waterford was no place for me”. It would only make my anxiety worse. Now that speaks volumes to me. So I was sent home with a pill under my tongue. For me to want to be admitted, to such a place, meant I was desperate. But I left feeling there was no hope. What we need is a new hospital; a hospital that gives us hope. Without hope we will never heal.

We need a hospital with an environment that says, welcome, you are safe here,we are going to give you the help and support that you need and deserve. And not every illness cramped into a single room or wing. Someone dealing with depression, anxiety, eating disorders, etc. placed on wings of the hospital that are less anxiety provoking; where patients are dealing with the same or similar issues. And other severe illnesses placed in a safe environment for them, based on the severity of their illness, not on wherever a bed is available. It doesn’t make sense herding all illnesses/disorders onto the same ward. You wouldn’t put a cardiac patient on a maternity ward, so why would you put someone with depression on a psychosis ward. Your diagnosis should determine where you are placed in the hospital. Also, if a school was as stigmatized and delapitated as the Waterford; would we send our children there? No, we would fight for a new school. Why then are we willing to send our loved ones to such a disgraceful building?

The name of the hospital itself needs to be changed: “The Waterford Hospital” shouts stigma and raises red flags right away. The first thought that comes to my mind is; “the looney bin”, that’s just how stigmatized the building is. So sometimes to break down the walls of stigma, we have to literally tear down the walls!

So, let’s get talking and break down the walls of stigma. I am not ashamed of my illness, no more then if I had any other form of illness. I am a real person, with a real illness and I wish to be treated no different. I will face life with my head held high and no one as the right to stigmatize or discriminate against me because I have a mental illness. Maybe tomorrow it could be you, never judge a book by it’s cover! Respect everyone!