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

 

 

 

Tomorrow My Baby Turns Eight

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On the eve of my baby girl’s eighth birthday, I can’t help but feel an overwhelming sense of gratitude. Gratitude that I get to be her Momma, and for every day that I have been able to place butterfly kisses on her sweet little face, to feel her love for me through precious smiles, for being able to see how she impacts the lives of those around her, and how she is an authentic teacher. Her ability to captivate and inspire others about acceptance and the possibility in everyone is amazing.

Eight years ago, we didn’t know if she would survive her first moments. Eight years ago, I couldn’t imagine this day and, if I am being totally honest, these last eight years have not been for the faint of heart. Some have been the most difficult, and downright soul crushing years of my life, but many have been filled with joy, happiness and celebration because this beautiful, spunky girl of mine has been hell bent and determined to overcome. She has taught me that everyday is a gift; one to be deeply cherished and celebrated.

So tomorrow, with members of our family and some of Olivia’s dearest friends, we will do just that. We will play her favorite games, blast some of her favorite tunes and stuff our faces with her favorite Costco cake! Because by jaysus, this red headed firecracker of mine, deserves it all! Happy 8th birthday my beautiful girl! Xo

Another Battle Brewing

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Days like today draw a blow to me equivalent to a punch in the gut. We had Olivia’s follow up with her pediatric physical medicine specialist and orthopedic surgeon. We have been exploring noninvasive treatments to treat pain and discomfort related to hip subluxation (when the “ball” of the hip begins to drift out of the “socket”), in an attempt to buy Olivia some time before another extremely invasive surgical procedure.

Hip subluxation is another condition that develops as a direct result of Cerebral Palsy. Muscles in kids with CP, who exhibit high spasticity, like Olivia, are in constant battle with the bones of the body. As the body grows, the tight muscles keep pulling and adding pressure to the bone and joints. This leads to the development of scoliosis, hip subluxation, and many other structural problems within the body. The most common interventions are an assortment of pain medications, orthopedic intervention in the form of surgery, various adaptive equipment, physiotherapy and occupational therapy. When the less invasive approaches are exhausted, surgery is the next recommended option.

In the past, our very brave girl has been deeply affected by surgical interventions, often leading her to being admitted into pediatric intensive care units post surgery, where nurses and doctors worked tirelessly to gain control of her pain. These moments were filled with fear when her heart rate reached dangerously high levels or when her little spirit seemed so lifeless and weak as she struggled to recover, we didn’t know if she would come home. These memories are fresh in our hearts and to think we may be revisiting these moments again, well…this Momma is devastated.

I mean, how does a parent decide…really? No parent wants their child to live a life of pain, but the road to lessened pain is paved by intense and invasive pain…AND, there is no guarantee that the surgery will work.

So tonight, as I sit snuggled in tight, holding my girl close and breathing in her freshly shampooed hair while she sleeps; my mind and my heart struggle to know what is right. No decision needs to be made tonight; not even tomorrow; but one will need to be made. If we do nothing, there can be long term affects. If we do something, it may work or it may not and she still may develop issues as a result of the surgery. The surgery may not be a one time deal. She potentially could have this done and need it done again in a few years.

As much ground she has gained socially, and the minimal ground she has gained physically; the constant remains, Cerebral Palsy will be the devil she fights daily. With every ounce she has fought to keep, CP threatens to take it away.

Olivia has always been our warrior. She wakes up each day with a precious smile and a heart that warms everyone around her. In a world where our words are our greatest tools, she has spoken to the souls of strangers despite her lack of speech and has brought education and spotlight to Cerebral Palsy and disability. She has, and always will be, the bravest person I know. So, tonight, we will steady our pace, read and re-read all the literature we can and keep asking and exhausting all options before moving forward.

To all the other Mommas and Daddys out there, who are chasing these fears and struggling to do what’s best, I feel you. May the love and strength we have for our children guide us through these dark times and may we find that strength while holding our little one’s hands through metal bed rails, while trying to maneuvre through IV lines and drown out the constant noise of beeping machines. The life of raising a medically fragile child instills with it a deep respect for life’s delicacy, paired with the love for life’s resilience.

How Lucky Am I?

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It’s late. As I lay here in bed, soft sounds buzz from the lowered volume of the television and I am surrounded by the warm snuggles of my girls; gratitude envelopes me. The calmness of their breath captivates this treasured moment of quiet slumber.

It’s these moments, in which I study the freckles around their noses and the tiny curls that peek from the corners of their temples. When did they get so big? Yesterday they were wrapped and swaddled cozey in my arms, today they stretch half my body length. Sigh. Time, please slow down.

It’s oftentimes easy to get swept up in the busy tasks of the day-to-day, but one thing I have learned since Olivia’s arrival is nothing in this life is ever guaranteed.

I soak up this time and cherish every second. The same goes for nights in which pain comes hard and fast for Olivia and I rock her through another storm. In those moments I beg God, the Universe, whatever; to put her pain onto me, so that her little body is spared. These moments crush me, but I am her Momma and I will ride the storm with her.

When you have a medically fragile child, every single day is a gift.

Tonight, as we lay snuggled in close; I soak up the warm, sweaty curls that stick to their cheeks. I listen closely to the softness of their breaths. I imagine the wonderous dreams that fill their innocent thoughts. How lucky am I, to be their Momma?

Taking The Good With The Bad: The Day to Day Challenge Of Raising A Child With Extraordinary Needs

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It was a long day. The kind of day that warrants a cold beverage and several uninterrupted moments of mind numbing reruns on television because this is all my head can handle at the moment.

Today was Olivia’s annual appointment with her rehabilitation team. These appointments consist of Olivia being the focus of more than a dozen medical professionals ranging in various medical expertise, talking about her development and achievements; as well as medical issues that have arose and require further investigation. She always gets xrays, is examined by both ortho and physio teams and we answer series of questions ranging from nutrition to muscle spasticity and seizure control.

Olivia is a beautiful seven year old with a keen sense for adventure, loves everything family and gets more joy out of life than anyone I know. She is also a child that was born into a body that battles her every movement, deprives her of rested sleep, jolts her into epileptic seizures, causes her painful muscle spasms and is the reason for more than a half dozen surgeries and medical procedures. For every success she has strived to achieve, there has (and always will be) something else Cerebral Palsy affects.

This is why it came at no surprise when her orthopedic surgeon looked at me and said,”we think it’s time we started to discuss the need for hip surgery.”

This is Olivia’s reality. This is our reality.

These are bad days. These days suck. But parents like us realize if we focus too long on the bad days, we miss out on the good ones.

I am a firm believer in living for today and always having hope for tomorrow. So tonight, as I mull over all of the information we received today; tomorrow we will research alternative, non-invasive treatments to alleviate the strain from Olivia’s hip.

Tonight I will remember all of the previous challenges Olivia has faced and kicked ass because this kiddo was born a survivor. We will get through this. There will always be the day to day challenges, but we must focus on the good.