World CP Day: See The Ability

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Nine years ago, I had no idea what Cerebral Palsy was or how it would become a part of our everyday life. Like many, I never knew anything about the most common childhood disability and how it impacts millions worldwide. But, all of that would change on a cold October morning in 2010, when our daughter Olivia was born.

I remember the first time I laid eyes on her. She was lying in an incubator in the NICU, wires and machines everywhere, but there she was…this perfect little nine pound gift, with fire red hair in a faux hawk style. Her hair and spunk would become the talk of the NICU, and the nurses would all have their turn at styling that badass little do. So, how could such a little wonder be dealt such a heavy hand? Receiving Olivia’s diagnosis of Cerebral Palsy haulted every emotion I had. The future her medical team painted was filled with struggle and sadness.

How could that be? How did they know? The thing was, no one really knows what the future holds. That was the moment we decided Olivia would get every opportunity to succeed; whatever that looked like.

Here we are, almost nine years later and the term Cerebral Palsy no longer carries with it, a punch to the gut affect on me. It also doesn’t look anything like the picture painted for her, almost nine years ago.

Olivia’s successes are not measured by standard milestones, they are celebrations of perseverance achieved by overcoming adversity. As Olivia found her way, she lead us through her journey, and taught us to look beyond the challenge and see the ability.

Olivia has developed skills in advocacy, teaching others about eye gaze centred communication; she has developed a love for physical activity through inclusive sport, she continues to build on her love for learning and has shared with me, that one day she would like to become a teacher. Her abilities far outweigh the challenges she faces daily.

This week, on October 6, we will be participating in a day that holds great importance to us, World CP Day. World CP Day is a global awareness day dedicated to research, education and awareness for Cerebral Palsy. You can learn more at http://www.worldcpday.org. If we are to change how we as society perceive disability, days like this are essential. What most of us seem to forget is, disability can affect us all, at any stage of our lives. Topics surrounding accessibility and inclusion should be conversations we are all interested in having and learning how we can achieve higher standards of each.

On October 6, I hope you all will consider joining us in wearing green, for Cerebral Palsy.

Olivia’s Year: Grade Three, Here She Comes…

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Today our daily routines officially switched from laid back, wake-up-when-you-damn-well-feel, to waking up to alarms, bustling around the house and getting out of the house on time for the bus to arrive. Yup, we are in full swing of the back to school season!

It’s all good though. Getting back on track and routines situated after a restful summer, brings with it a sense of renewal. We all needed this reset and are eager to see what this new school year has in store.

For instance, last year was a tough one for Olivia. She endured a tremendous hip reconstruction surgery that took an immense toll on her, both physically and mentally.

The impact lead to almost two months of missed school. Missing that amount of time impacted her ability to catch up on the work she had missed. Knowing how much our girl loves school, like seriously LOVES school, we felt it only right to have her repeat her current grade. Yes we considered how friends would move on to the next grade without her, but we also knew that it’s a great opportunity to meet new ones; growing that beautiful circle of friends even more. We also knew how unfair it would be to push her ahead, without her having the foundation of information from her current academic year. I mean, how could she retain and understand new information in the next level, without having a solid understanding of the previous work?

So here we are, believing wholeheartedly in our daughter’s ability and how she absolutely deserves every opportunity to succeed. Call it a “do-over” year, a repeat year, or whatever you want; we choose to call it Olivia’s Year. Because damn it, she deserves a shot at showing she can do it…and we know she will.

Raising a Child With Extraordinary Needs: How the Lines Between Parenting and Caregiver Become Blurred

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Truth be told, when I found out I was pregnant with our third child, I never thought we would be raising a child with severe physical disabilities, a seizure disorder, gastroesphageal reflux disease, or care beyond anything we had ever experienced before.

It’s not something any parent ever imagines, but here we are eight years later, learning day by day how to provide the best care for our daughter; all the while finding the balance between being her Momma and her caregiver.

As odd as that may sound to some, parents are typically not caregivers. Yes, we care for our children through nurture, love and support. We guide them throughout their milestones, celebrate their independence, and as they grow, what is required of us, shifts. We move from changing dirty diapers and the messy (but fun) toddler years, to sending them off to school, watching them establish new friendships, seeing the occasional glimpse of who they will become in this world, and knowing one day your nest will be empty.

Many families, like us, raising children with extraordinary needs, instead live our lives through a different lense; one that consists of two roles: parent and caregiver. The role of caregiver becomes deeply entwined into our parenting role. As we love and nurture our children, we are learning to provide care that is essential for the well-being and development of our children, for the rest of their lives.

Some of us have not moved beyond the diapering stage, and possibly never will. Some of us are still feeding our grown children because they lack the motor function to do so independently, or they require feeds through a feeding tube in their nose or bellies. Some of us are lifting our grown children in and out of bed, into wheelchairs, into bath tubs, or into specialty devices. Some of us have chronic back problems. Some of us are struggling with mental health issues like anxiety and depression. Some of us have chronic broken sleep because we must tend to our children throughout the night with seizures, muscle spasms, reflux pain, insomnia, etc. Some of us have had to sit at the bedside of our children in the hospital and struggle with the worry they may not be coming home. All of us have had to learn the medical lingo used by professionals when discussing our child. All of us have had to learn to become fierce advocates so our children get the support and care they need. Some of us have had to leave full-time jobs and careers to care for our children. Some of us struggle with worry for the day we become old and our bodies feeble and we wonder who will help us care for them? What if we die before them?

Throughout all of this, us Mommas and Daddys work hard to strengthen our children’s abilities, pushing them to never give up. There is no better feeling than the moment you see your child overcome a challenge and see the sheer pride and sense of accomplishment in their eyes. These are the freaking AWESOME parenting moments!

For us, much of what I have mentioned applies to our family. We have learned to be parent caregivers. We had to be trained by physiotherapists to do specific stretches and positioning that would benefit our child. We were taught exercises targeted at motor function development by our occupational therapist. We have had indepth discussions surrounding caloric intake and ways to improve growth and development with the nutrition support team. We have sat with our daughter through several EEG tests to address seizure activity, all the while working hard to distract her while the technician attached nodes to her head. We have sat by our daughter’s bedside in the hospital while she recovered from surgery over a dozen times. We have been at her bedside in hospital for Epileptic events and sickness countless times! I have watched my eight year old daughter not even flinch when poked with a needle because by now, she has been poked literally hundreds of times. I have learned to change a g-tube in the comfort of my home, unassisted by nursing staff. I have removed bandages post surgery, I have (and still do) administer medication three times a day, carefully and accurately measuring each dose of the four medications required. I have not had a full night’s sleep in eight years. I watched EMTs perform lifesaving measures to save my child. I have sat by my child’s bedside in hospital, not knowing if she will be coming home. I have learned to use countless adapted devices that support my child’s well-being. We too, worry about what the future will bring. I have come to accept that our daughter will not have the independent life we had always wanted her to have. It’s a hard truth that has taken me a long time to accept. Although she may rely on us fully, we will always make sure her life is full and rich with experience. We work hard to focus on the abilities she has and not emphasise her limitations. Just because we don’t emphasise them, doesn’t mean they go away…and it doesn’t mean we have lost hope because we acknowledge they exist. I will forever be my daughter’s cheerleader, her soft place to fall, and the person who will always have her back. Because this is what we do for our kids.

Life can be a lot to handle sometimes…heck, a lot of times. It’s hard. It’s messy. It’s beautiful. It’s crazy. It’s raw…..and I think all families, no matter if you are raising typically developing children or kiddos with extraordinary needs, can relate. There are days I cry heartbroken tears, then there are days I cry joyful ones too. There are days I don’t know how I’ll ever make it through. There are days I question if I’m enough or if I’m doing enough. The lines between parent and caregiver has blurred for me because I can’t be one without the other. Throughout these last eight years, I have learned I am resilient, I am strong (eventhough at times, I feel weak…and that is perfectly ok), and if given the opportunity for thirty minutes of peace, I’m headed straight for a nap.

Breathing Again

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It has taken me two weeks to process the last two weeks…

The morning following Olivia’s hip reconstruction surgery all I could think about was, she made it through. The road to recovery will be long, but she survived.

Breathe Momma, breathe.

Raising a child with complicated medical conditions creates a duality in the mind; living in the moment and enjoying every beautiful minute with them, but at the same time, carrying the devastating reality that their life is exceptionally fragile. The next surgery, virus, or complication in their condition could kill them.

Walking into the hospital the morning of her surgery was a surreal. My mind was carrying heartwrenching worry, while my body moved through the motions. It felt like an outer body experience. Olivia had been through countless operations and procedures before, but this time was different. This time, our greatest fears our daughter may not come home, were real.

As I entered the operating room with Olivia, I watched how unphased she seemed. Like I said, this kiddo has been through more than her fair share and had developed a tough armor of courage. I watched as the nurses transferred her from hospital bed to operating table, taking great care in her comfort. She smiled at them; her way of saying thank you. Once she was situated, I scooched in close to her as the anesthesist placed a mask of medication over her face to promote a medicated slumber. I then did what I have done many times before; I sang my baby off to sleep, only this time a chorus of OR nurses joined in. An enormous lump formed in my throat and tears filled my eyes as I continued through the lyrics of, “Out on The Mira”. As Olivia’s eyes closed, I looked around at her team and told them, “take care of my baby”, kissed her head and silently prayed for God to keep her safe. Walking out of the OR this time was different. My body moved, taking steps one foot in front of the other, but my soul was drowning in fear for Olivia’s life.

Craig and I spent the next while sitting in silent prayer in the hospital’s chapel. There was nothing more we could do. As the next seven hours passed, we went through the motions, trying our best to occupy our minds. We longed for the call that Olivia was in recovery.

Later that afternoon, Olivia was in our arms again. The vice of stress that held tight my chest, released. I took my first real breath as I laid eyes on my sleeping beauty. Emotionally we were broken, exhausted, relieved and thankful. A complete mixed bag of feelings drenched in gratitude.

We are now two weeks post op. Life is slowly emerging into the recognized routine we relish. Monotonous tasks like dishwashing bring with it peace of mind. Olivia’s wounds are healing from this most recent battle. These scars join the others that tattoo her body, serving as a constant reminder the havoc Cerebral Palsy has waged on her tiny body.

Olivia is her amazing marvelous self. She is getting use to the constant wear of her hip brace and is enjoying all the added attention from her siblings, friends and family. I am, once again, in awe of my daughter. Her sheer tenacity and resilience is something of wonder to witness.

I Am Olivia

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For eight years we have worked very hard at translating Olivia’s non-verbal queues (a smile might mean a “yes” or “I’m happy”). Sometimes we got it right, other times we didn’t; leaving both of us tired and frustrated. Temper fits and meltdowns were a common occurrence for Olivia; could you really blame her? My heart broke when I “guessed” wrong (because let’s be honest, it was just that…a best guess), and I would feel as if I failed her. But then a beautiful thing happened, we learned eye gaze communication.

When Olivia was two years old, I began to notice that she would look towards specific objects or people when she understood the name or word spoken. I began to ask her, “Olivia can you show Mommy where the clock is?” or “Where is Daddy?” She would then shift her eye gaze towards our clock hung on the wall or her father sitting in the chair. I proceeded to ask her about other things and when she showed me correctly, I would clap and celebrate her accomplishment. Finally we were building a bridge of communication and it was wonderful!

Olivia advanced her communication skills to low tech devices like eye gaze boards and then eventually onto partner assisted scanning using PODD (Pragmatic Organisation Dynamic Display), an example of augmentative communication using a book or device that displays a series of symbols and words. A great example of how to correctly model PODD is shown by Karen Owens of We Speak PODD. 

PODD was a great stepping stone for communication technology. Olivia was able to improve her ability of controlling her eye gaze, a difficult task that can be quite fatiguing, but necessary when utilising devices like the Tobii Dynavox Eye Mobil Plus. It is here where Olivia has really begun to expand her desire and ability to communicate. She is truly finding her voice for the first time!

Today we use a combination of low tech and high tech communication. I like to think of it as an adapted version of how we all communicate on a day-to-day basis. We each tend to use our bodies to convey messages we want others to receive. For Olivia, her body language is her facial expressions combined with her communication software and device, her voice. It has been such an amazing transformation to watch her grow both in mind and spirit. She is a much happier child and her relationships with both of her siblings has grown so much stronger. She enjoys razzing them both when the opportunity presents itself (youngest sibling = kinda her job…lol) and I never stop getting tired of her “Hi Mom. I love you” messages. I have waited eight years to hear those words and each time they still bring a tear to my eye.

“I am Olivia.”
It makes me so proud when she chooses to use this sentence because it is a profound three word statement that is more than just a statement of her name, it is the building blocks of individual advocacy and the opportunity to personalize her individual abilities. . The sky is the limit and we have just embarked upon the cusp of the horizon. Look out world, my baby has found her voice and she ain’t afraid to use it!

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Inclusion: It’s Not Rocket Science, But it Does Take Effort

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Inclusion is a word that is not difficult to understand; simply put, it means making others a part of your group. Yet, somehow this is still a challenging concept when applied to the special needs and disabled communities. We most often hear about inclusion as it pertains to education, but opportunities for inclusion exist throughout our society and at home.

Our family’s policy has, and always will be, if we can’t adapt the activity or outing for Olivia, we don’t do it. We were never going to separate or exclude Olivia from her siblings. By teaching our children that we can adapt to change, they developed a deep value of acceptance for their sister’s abilities and needs. I mean this when I say, not once, did they ever complain about not going to the indoor trampoline park or eating at the restaurant that didn’t offer accessible options for their sister. If anything, they were outraged that these considerations weren’t made.

The same can be taught within our schools and communities. If we are to speak about inclusive education, I draw attention to the amazing job our school is doing to model inclusion on a daily basis. We have been in this school, going on, our third year. When we started at this school, Olivia was the only child in a wheelchair and the first with severe Cerebral Palsy. We were a bit apprehensive attending our first school meeting, but were quickly put to ease with the school team’s willingness to listen and embrace Olivia’s needs. What they didn’t know, they were eager to learn. This was so valuable to us! They were open to having me in attendance for her first week, where I taught them about her non-verbal queues and her ability to communicate using an Eye Gaze board. The openness to learn extended to the student body where I was invited to speak about Olivia, and others like her, living with Cerebral Palsy; and how everyone, despite their differences, has ability.

Olivia is fully integrated in her classroom. Her peers know how to communicate with her using eye gaze. Once, in second grade, her teacher actually taught an entire lesson using eye gaze communication, so that Olivia’s peers could understand her abilities better. Her peers have completed lessons on measurement, with an emphasis on designing a fully accessible structure using foam blocks and they often adapt games and activities, on their own, so that Olivia can take part. Some may read all of this and think, why all this for one child? This is not all for one child; every child involved benefits.

The child who develops a sense of compassion for the child who has difficulty controlling their emotions, that was because of one child.

The child who looks past the child wearing braces on their legs and includes them in a game of soccer, that was because of one child.

The child who stands up for injustice or intolerance, when they witness another child being bullied or hurt, that was because of one child.

The child who develops a friendship with the child that is non-verbal, that was because of one child.

The child that recognizes that their friend in a wheelchair can’t use their school playground because of accessible barriers, that is because of one child.

Our children learn from one another. They also learn from the relationships we, as adults, model for them.

We Need to Talk

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I am finding it difficult to articulate the right words for this post because they are clouded by my emotions, but I will do my best to convey the message I want others to learn. Let me back up a bit and bring you all up to speed on what has compelled me to write this post. Today, while browsing through our local news online, I came across a piece about a young teenage boy with Cerebral Palsy who was degraded and bullied by fellow students of his high school. The teenage boy was dared to lie down in a stream of water and if he didn’t they would make him (as told by his mother); while fellow students yelled derogatory comments and one female student (depicted in the video) walking onto the young man’s back and using him like a human bridge. I will give you all a minute to let those images sink into your mind.

If, at any point, none of this infuriated you, we have a lot to discuss and you should definitely keep reading this. If it did, thank God and there is still hope for our future generation.

I am a firm believer that the best, and only successful way to bring change is to use your voice and educate others, so here I go doing my best to educate those who felt this was “teenagers being teenagers”, “he looked like he wanted to do it”, “back in my day, this wouldn’t have been a big deal. Y’all are too sensitive”, or any other ludicrous notion, other than this was completely and utterly UNACCEPTABLE!

Since when, has it ever been okay to take advantage, humiliate or attempt to dehumanise another person? This young man is a person; a person with thoughts, feelings, aspirations, and purpose. But none of that was taken into account through the actions of these young people. I don’t know what their motivations were and how this situation came to life, but I can assume it was motivated by the fact that they perceived this young man to be an easy target; someone they viewed as less. This is where y’all can pull up a seat and get comfortable because you are about to get educated.

People in the disabled and special needs communities have been working tirelessly for decades,  to change the perception that because they learn differently, speak differently, walk or move differently, or exhibit unique abilities that are not considered the “norm”, they are somehow broken or deemed less. Because of this, many have been bullied, manipulated or abused. Those that prey on them, take advantage of their trust and vulnerability because they feel they can. These people are cowards.

Ignorance and discrimination are ugly characteristics that have no place existing in our society! Where is the compassion? The acceptance? The love?

Some people may look at my daughter Olivia and see only a child in a wheelchair, who doesn’t speak and whose body sometimes moves in different, sometimes involuntary ways. We have had the pittied stares and the occasional ignorant questions, but they are not welcome in our life. We take every opportunity to educate others about Olivia’s amazing abilities and her incredible perseverance. What I have learned, through raising a child with extraordinary needs is you will never witness a fiercer sense of survival or drive to overcome! There have been many extraordinary examples of people throughout history whose differences inspired and changed our world.

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Perhaps some of you are familiar with famous American author, political activist and lecturer, Helen Keller. When Helen was 19 months old she contracted Scarlett Fever and it left her blind and deaf. During this period, Helen’s parents were unsure what the future held for their daughter, but they didn’t give up (and neither did she).

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At the age of six, Helen’s parents hired a teacher from the Perkins Institute for the Blind. With a lot of hard work and determination, Helen soon learned to communicate using her hands; spelling words into the palms of others. At the age of 24, Helen became the first deaf-blind person to graduate with a Bachelor of Arts degree from Radcliffe College and going on to be one of the most influential people of her time.

Another influential person whose talents and incredible mind shaped the field of theoretical physics, is a gentleman by the name of Stephen Hawking.

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Mr. Hawking was a writer, professor and prolific scientist. His book, A Brief History of Time appeared on the British Sunday Times bestseller list for a record breaking 237 weeks (according to Wikipedia). Mr. Hawking developed Amyotrophic Lateral Sclerosis (ALS) which left him paralyzed, but this didn’t stop him from continuing to educate influential scientific minds, appear on numerous television interviews, or publishing articles based on his research.

A well-known Irish artist, who was the inspiration behind the movie, “My Left Foot”, was none other than Christy Brown. Christy was born in Ireland in 1932 with Cerebral Palsy. Although he had limited fine motor function, he taught himself to paint and write using only his left foot. He became famous for his self-proclaimed masterpiece, Down All The Days, which was translated into fourteen languages. Christy also went on to publish many poetic works.

All of these famous and extremely prominent individuals had extraordinary needs and without their brilliant minds, incredible talents, or profound voices, we would be sadly robbed of their contributions that molded minds, inspired future scientific discoveries, and evoked emotion and compassion in others. They most certainly were NOT less!

We need to understand that our unique abilities are strengths. When we are accepting of each other’s differences, we grow as a community that is rich in diversity, creativity, and compassion. If our neighbour struggles, we don’t push them down, we offer an arm and lift them up: figuratively and literally. Those who are vulnerable need others with voices who will stand up against the intolerance inflicted upon them. If we quietly stand by while others are treated unfairly, we are condoning the action. So I will not quietly stand by and say nothing. What was done to this young man was unspeakable. If the individuals involved in this incident are to learn anything, I think it needs to be taught through action and education. Perhaps they need to be assigned as volunteers in the school’s learning centre where they can participate in learning and understanding the abilities and needs of their peers; sit and eat lunch daily with them, participate in activities, formulate questions and have a conversation to better understand the thoughts, feelings, and aspirations of each of them.

We grow and become better human beings when we take the time to learn from each other.

“It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences.”~ Audre Lorde