It’s More Than Just Wearing Green

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Why are awareness days so important? What makes them so special? Why do we put the spotlight on a particular group of people?

I’ll tell you why…

The only way to successfully eliminate ignorance, discrimination and inequality is through education. Awareness days are opportunities to discuss, teach and learn about others who may look, speak, walk, or learn differently from us. As a society, we have been conditioned to take notice of other people’s differences. For individuals like my daughter, having these differences cause her to stand out; sometimes generating whispers, stares, or abrupt spontaneous questions (often asked nervously).

Awareness days like World Cerebral Palsy Awareness or National Cerebral Palsy Awareness Day, allows us to start the conversation, eliminating the so called “elephant in the room”. It’s an opportunity to speak about what CP is and how there are many people who have it, that are living very fulfilling lives, participating in various aspects of society. It gives us the opportunity to speak about various types of equipment you may see someone with CP using, like a wheelchair; and understand that this device assists with the individual’s quality of life.

Awareness days can inspire us to invent or develop better devices and services to assist and improve the life of individuals living with CP. These days encourage others to look beyond the limitations or challenges and see the person.

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In this day and age of fully integrated classrooms and full inclusion in recreational activities; awareness days are absolutely essential, especially for school age children because they are the future generation. It’s not just about wearing green or whatever color is associated with a specific ribbon of an awareness day, it’s about WHY are we doing this? It’s about promoting equality and understanding one another. Fear is such a natural feeling that can occur when we are faced with something or someone that appears very different from us. Learning about these differences and understanding that we really aren’t that different, helps to strengthen bonds and allow relationships to develop easier. By eliminating the boundaries we create equality.

So the next time you hear about an event promoting World CP Awareness or World Down Syndrome Day or any day set aside to educate, celebrate and promote equality; take a few minutes to stop, listen and learn. At the end of the day, all anyone wants is to be seen for themselves, not judged by what they appear to be.

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Wonderful Wednesday

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We’ve been weathering through a few storms these last few weeks. Discovering that Olivia has epilepsy, our basement flooding, a serious lack of sleep, disputing a suspension from school notice issued through our public health office stating Olivia is behind on a particular vaccine (which she isn’t), and hitting a few bumps in the road with Olivia’s rehabilitation team; had me rock bottom, flat on my back, burnt out.

The first Wednesday of every month is a glorious day! This is when our special needs parents support group meets. I couldn’t have been more thankful for the arrival of this Wednesday. Being surrounded by others who get what you’re going through evokes a feeling of calm, peace and understanding. Sure not all of us share the exact same experiences, but to an extent we’ve each walked in the footsteps of the same path. It’s this, in its entirety, that makes support group so great.

The problems I had going into the group were not miraculously solved. That’s not what the group is for. What I get from going to our group, is a sense of peace. Talking, connecting and listening to other special needs parents share their experiences, helps me to remember that although this journey can be extremely difficult and challenging, I am not alone. Just the fact that they get it, calms my mind and I can readjust my focus. I feel a rejuvenation and walk away empowered, ready to face the hurdles that lie ahead.

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There Are Better Words To Use: End The R-Word

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Folks, why oh why is the r-word still spoken in cavalier conversation? I honestly hear it every single day, used to describe behavior, people, and situations. This word is offensive, ugly and carries a great deal of ignorance and insensitivity to the special needs community.

It’s easy to put this word to rest. Simply think before you speak.

I don’t believe you are a person, who would openly insult, offend or hurt people like my daughter; so I have to believe you just need to be enlightened. Each time you use the r-word, you are condoning the use of a word that defines people like my daughter as being less, broken, damaged, and stupid. I am informing you today. PLEASE hear me; STOP using the r-word!

There are an abundance of adjectives in the English language, there is no need to keep using the r-word as one. Today, make the effort, think before you speak and finally put an end to this word in our vocabulary. If not for me, please do it for her.

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Together We Can Bring Change

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When you are a family to a child with special needs, navigating through the various branches of health and rehabilitation services, sorting through funding grants offered by your province, special education programs offered in schools in your neighborhood, and many other resources that are available in your community; is an extensive learning curve. But what if you were required to do this every two, four or five years? Military families deal with many complex situations that are often challenging, but add the dynamic needs of a special needs child and you have a very unique situation. Often times, families feel very much alone, isolated.

We are a military family who also happen to be a family to a child with special needs. Each year, around this time, many military families are receiving news of postings to different cities or provinces. There are resources put in place to make the move as smooth as possible, but for military families like ours, we move to these regions with a huge unknown; what resources and services are available to our child? What support will our family receive? Families with special needs children require a contact at their new base, a liason; who is knowledgeable about services and can provide information that can guide the family through their new transition.

Recently our base has made this resource available. A special needs liason who can provide information about services and programs available in our area, who actively connects with community partners, organizes a special needs parents support group for military families, assists in the development of recreational programs and is knowledgeable about special education programs offered in the area. I am so overjoyed with the development of this position because so many military families will breathe a little easier. If you are a military family with a special needs child, contact your local military family resource center for information on who your liason might be. If there is not a specified liason for your base, try contacting the social worker connected to your center. They may be able to assist in the same degree, as a liason.

I also had the opportunity recently, to participate in a study that focused on information about services provided to military families upon relocation. It was an independent research study conducted by a university student, studying how to improve the quality of services and information provided to military families of children with special needs. The goal is to develop a type of information booklet, compiled with each province’s list of rehabilitation services, special education programs, community partners, special needs liason (if available), and other helpful resources including the contact information for each individual and to have this booklet available through local hospitals, military family resource centres, community partners and possibly schools. What a great resource this will be!

It is wonderful to see these issues recognized and new programs and resources developing because of it. They never would have happened without the participation of military families who were willing to share their concerns. Thank you to those whose voices helped to implement change and provoke thought into an area that went unrecognized for far too long.

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The Voice Of My Nonverbal Child

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In the five years I’ve been Olivia’s mother, I have learned that my voice is an important tool in my daughter’s well-being. With it, I hope to help Olivia obtain opportunities that may never have been presented to her and to assist in the assurance of equality.

As parents we strive to do what’s best for our children. Ideally we make sure they receive the proper balanced nutrition in their meals, practice good hygiene, be mindful of their manners, finish their homework, be respectful of others and be kind, loving people. We hope through this guidance that they one day will grow to be confident, good natured members of society. As a parent I value all of these ideals, but one ideal I didn’t list; which not many parents think about, is equality for their child. Parents to children with special needs have this on their minds everyday.

This day in age, equality should be a given, not a goal we wish to achieve. It shouldn’t have to be a topic of debate, but we see it everyday on the front pages of our newspapers, headlining stories on the news and trending on social media, instances in which individuals’ right to equal education, equal opportunity, equal employment, etc, etc, has been threatened.

I want a world for my children that offers opportunity for each of them. Neither of them should be scrutinized due to gender, disability or how they live their lives.

Olivia is only five, but in her five short years, myself and husband have had to be her advocate; her voice. Why? Because our daughter is disabled. I cant tell you how much I hate that word. The prefix “dis” promotes negative and an unwillingness; as if being different were something that were ugly or of burden; but it’s the definition society assigns to those who have limited abilities or differences in their physical appearances than that of our own. I recently heard the term difference of ability and thought how it promoted a more inclusive feeling. How the implementation of this term could potentially have a positive impact on how individuals with different needs are viewed. We all have different abilities, this is no different from an individual who relies on a wheelchair to move around or uses communicative technology to speak. Using these tools is just that; they are tools to assist that person in life. Would you ridicule someone for wearing glasses and limit their right to equality because of this? Of course not. Then why do we do so for those who also rely on assisted devices? I bet you never considered eye glasses to be an assisted device.

We have had to strive for funding for programs, equipment, educational opportunities, and developmental support. Everyday I wake up wondering what challenges, road blocks, or walls I will face and how will these challenges prevent Olivia from reaching her full potential or achieving the goals she sets for herself. Will she grow up in a world where she is viewed equal to her peers? One day I hope this to be true. For now I will continue to be her advocate, her voice and her biggest fan because I believe this world can be better for our children.

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2016: A Great Year For Change

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Well winter is here and a new year has begun. A great time to evoke change! The change I want to see is in accessibility. 

Oh the joys of winter. Walking with a wheelchair over icy banks and navigating around inconsiderate vehicle owners; who block sidewalks (not even bothering to use their entire driveway), forcing us out onto the roads. Because ya know, it’s so easy maneuvering 70 lbs of steel and kid around the ass end of your bumper.

And those icy banks? Don’t even get me started. I mean, how hard would it be to, I don’t know let’s say, NOT dump that load of snow at the end of the walk way!!?? Why not put it on the grass side of the sidewalk or anywhere else!? I’m not a professional snow plow operator, but isn’t the idea to CLEAR areas, not to obstruct them? Call me crazy, but the service you are providing is called SNOW REMOVAL.

Oh and before any nay sayers start harping about why we don’t take the bus? Let me tell you something, we do. We do on stormy days and days that are not fit for walking. But on beautiful, crisp winter mornings, we like to walk. Because it’s everyone’s right. End of story.

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Accessibility is difficult to come by. Period.

You would think it to be only common sense to have the day to day luxuries like walking to school or being able use a public washroom, available to all abilities, but in reality it’s not!

Have you ever tried taking your five year old to a public washroom to change their bottom? Most of you probably have never had to do this. I have. This is our reality and do you know what we are faced with? We get to carefully attempt to change our child on a tiny Baby Change Station, located on the wall of an almost too small accessible washroom; not capable of housing a wheelchair plus Momma plus child. Ah and did I mention, my daughter IS NOT a baby! In a  few occasions the change station has not been within a washroom at all, but outside the stall, near sink areas. I don’t know about you, but I’m not fond of showing my hoo-ha to the public; neither should my daughter!

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Does this look comfortable to you?

Our only other option is to change our daughter on the floor of our van. Where is the dignity in either of these choices?

Accessibility shouldn’t have to be a luxury given to few. It is a right for all! So why is it that society has not fully invested in equality for everyone? Why isn’t it something we all should be striving to achieve? Is it because it doesn’t directly affect you or someone close to you? Maybe you weren’t aware there is a great need?

This is what I want to achieve today and the days coming. I want you all to look around at the environment you live, work, shop, frequently visit, restaurants you eat at; and think of children like my daughter, in a wheelchair, still in diapers;  young adults with severe needs, individuals with walkers, canes, stability issues, elderly relatives. If they walked down your street, worked in your office, shopped at the same bookstore or clothing store, ate at your favorite restaurant; could they do so safely? Comfortably? Be respected and have their dignity preserved? If you said no to at least one of these, change is needed! Change must happen. Because it’s 2016 folks!

Four Days Of Gastro Woes

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The past few days have been tough on Olivia. Reflux pain, vomiting and many sleepless nights has drained her completely. We never see these flare ups coming and when they do, it could be a day or days before she is over it. Craig and I will take turns, sleeping with her to make sure she doesn’t choke from vomiting in her sleep, positioning her throughout the night to lessen the pain and giving her meds around the clock, hoping to relieve some of the pain she’s feeling.

One of the many linked conditions to Cerebral Palsy is poor digestion. Because CP affects all muscle function and control, the digestive system which is made up of soft muscle tissue is highly affected; leaving Olivia with gastroesophageal reflux disease (GERD) and other issues surrounding her entire digestive system.

It’s during times like this I wish it were possible to switch places with her. It kills me watching her go through this.

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Medications offer little relief; instead excessive vomiting caused by mucus from her nasal passages that pools into her throat and chest, continue this unending vomit cycle. When I see her go through all of this I can’t help but wonder, will she ever know what a pain free day is like?

And yet, despite it all, she still smiles and although completely exhausted, wants to play! She is a child who was born never knowing a life without pain and discomfort. Her tenacious spirit serves her well; pushing through the hellishness of this condition and striving to be a kid.

With everything this little munchkin has endured in her five years, she keeps persevering. Sitting here rocking her in my lap, listening to her finally sleeping peacefully, and tears in my eyes; I know that tomorrow could be a better day. I know that despite these last few difficult, completely exhausting days; it won’t last forever. The medications will eventually begin to work and Olivia will be her vibrant, happy and funny self again, but I do know there will be more days like this that lie ahead. So try as I may to search for positivity in this moment, the harsh reality is Cerebral Palsy will continue to wage war on my daughter. We will make it through this battle, but there will be more to fight in the days, months and years to come.