One Helluva Week…

Olivia has been experiencing full body spasms and severe reflux episodes this week. My tears have dried, but my heart is still carrying heaviness. Watching your child battle chronic pain is the absolute most unimaginable helplessness a parent could ever experience.

This week, I have held my nine year old child in my arms, gently rocking her, as she sobbed. As her eyes searched mine in a desperate plea to alleviate her pain, I broke and sobbed because the medication I gave could not numb the pain, the midnight stretching and massaging of her tightened muscles would not sooth, nor did the tender Momma cuddles bring reprieve. I cried harder as her little body wretched with each agonizing burst, and there was nothing I could do to soothe her pain.

My beautiful sunshine girl with a smile that could take your breath away, lives with chronic pain every single day as a result of Cerebral Palsy. Most days we can help her concur it, but days like this last week, these days the pain overcomes our brave fighter until she passes out. These are the days I hold her wrapped in my arms, her forehead wet and cheeks flushed from fighting through the pain. Her eyes close for a moment, as she folds in towards my chest and I wipe her dampened bangs from her eyes. There is little I can do during these episodes, but I know when they end, in my arms is where she wants to be.

Exhausted, emotionally defeated, and utterly shattered. These are the days I question why my little girl must endure so much. From the moment she breathed her first breath, Olivia has lived a life with chronic pain. Many who know her, see a child with a bright, charismatic personality and a smile that can take your breath away; and all of this is true, however, she also endures more than any of us could ever understand.

As I type this, I still sit at her bedside watching her sleep. Finally, her body is calm and hopefully will rest. She is drained. I’m drained. I know I should go to bed, but my heart needs to be near her longer. As she sleeps peacefully (for now), I cherish each calm moment she can dream. I pray that tomorrow will grant her grace.

I Am Olivia

http://www.livingoutsidethelinesorganization.com

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!

http://www.livingoutsidethelinesorganization.com

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

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.

The Struggle Is Real

Although I work hard to focus on “one day at a time”, I find myself searching down the unknown path of what the future will hold. These last few weeks have catapulted my thoughts into a million different directions and feel as though I am on an emotional cusp of breaking. Olivia has been having greater difficulty sitting willingly in her wheelchair. My husband and I have wracked our brains and have covered all of the possibilities related to comfort, support, and posture. We had originally thought her displeasure was caused from pain (and still aren’t entirely certain it’s not), because Cerebral Palsy causes her to have daily pain to some extent; it’s also possible this could be behavioral. But how can we be entirely sure? This is our dilemma.

This is the stuff that really sucks. The stuff, that in most situations, could be cleared up with a conversation or a few poignant questions? Is your seat uncomfortable sweetheart? Are you feeling pain today? Are you frustrated with sitting too often? But when you have a 5 year old nonverbal child who is still developing reliable eye gaze communication skills, and when thoroughly pissed off refuses to use what she knows; instead chooses to scream her hardest and sky rocket into a full on meltdown, everything goes sideways fast.

These are the times that break me down, ugly crying because I know as hard as I try, I will never fully understand my child’s needs. The best I will ever do is a best guess and that is a hard pill to swallow.

As emotionally draining these last few weeks have been, the small wins are what have gotten me through. Today we made it the entire way home from school, without me having to carry Olivia any part of the way. What did this tell me? Well for one, she probably wasn’t experiencing pain (and I highlight “probably” because thats my best guess) and/or she was in a great mood! That was a BIG win! I immediately praised her for being such a “big girl for sitting nicely”. She replied with a smile. Was she choosing to sit? I have no idea, but that was the hand I was going to play. It seemed to work, she felt proud, and I felt good (somewhat relieved) for guessing right.

To me, parenting a child with special needs is finding the steady balance everyday, grasping tightly onto hope and struggling to keep the fears at bay. It’s understanding that we never truly can predict what the future will hold and convince ourselves to stop trying. It’s reminding myself/ourselves that I am/we are doing the best we can.

Beating The Odds

Think for a moment, if suddenly you could no longer speak, move or make eye contact. You instantly become prisoner within your own body. For many of us, this notion would be difficult to comprehend. I recently watched a TED Talk given by Martin Pistorius, a man who at a young age contracted a virus that attacked his brain. The virus thrust this once active, yet shy young boy, into an imprisoned state within his own body. For 12 years he was thought to be a mere shell, a ghost of a boy he once was. However, that wasn’t so. Within his imprisoned state, he could still understand the world around him, yearned to communicate with his family, and wanted nothing more for his loved ones to know he was there; yet his body wouldn’t allow it. It was by mere coincidence that a new therapist assigned to his care witnessed a light within Martin. She informed his family that she believed Martin was still understanding and advocated the need to provide him with a way to communicate. He was given adaptive technology through a computer and for the first time, Martin communicated to his family that he was still here! You can read more about this amazing triumph and struggle to overcome the odds by searching “Ghost Boy by Martin Pistorius” or click on this link to watch his TED Talk Watch “Martin Pistorius | My Way Back to Words | TEDxKC” on YouTube

The brain is an extraordinary organ.

I am not a neurologist nor do I have any scientific background. I am a mother to a child who suffered extreme brain damage at birth. Much was unknown for Olivia’s future. There was a 50% chance she could have had severe intellectual delay, an inability to react to stimulus, a prisoner within her own body. In the first year of her life, much of this appeared to be true. Olivia did not make eye contact, she did not show any form of communication whether verbal or through body language, and at times she did appear to just be. This was extremely difficult to accept.

We however, chose to not accept it. Deep in my heart I believed my daughter was inside that body, struggling to show us that she felt our love and recognized our voices; felt every kiss and every soft caress of her cheek.

Like Martin, Olivia too was held prisoner by a body she could not control.

I will never forget the first time I witnessed Olivia track a toy with her eyes. At first I second guessed myself; thinking possibly the strong desire I had for her to do it, may have affected my perception. But then she did it again! Tears flowed down my face. To some this moment may seem trivial, but for Olivia it was of huge importance! For the first time she showed interest.

From that moment Olivia’s spark continued to shine. It was as if a light had suddenly switched on inside of her and our little girl was slowly emerging from her inner prison.

Today Olivia is a thriving 5 year old little girl. She has overcome so many odds in her short life. Her journey and fight to overcome the obstacles of Cerebral Palsy is not through. She continues to face challenges daily, but through her courage and determination and the love and support from her family, I believe the future for our daughter will be positive.

On many occasions she has shared, through expression, she would like to become a teacher one day. I smile writing this, because she has been teaching all of us since the day she was born.

“Dreams can be any size you want them to be. But the imprtant thing is that you have one that is yours”~Martin Pistorius

It Takes A Village

When you become a parent to a typically developing child, you are flooded with helpful advice from family, friends and other seasoned parents. But, when you become a parent to a child with extraordinary needs, medical fragility and developmental delays; suddenly you feel isolated and alone. There is no one rushing to offer you supporting advice or wrapping you in this warm blanket of knowledge. The feeling of isolation and trying to navigate this new path can feel a bit like being dropped into the centre of some foreign land. You’re left alone, trying your best to learn the language, but don’t know who to turn to for guidance and support.

This is how we felt.

It took time for us to develop our village. I remember the feeling of reassurance I had, the first time we met the members of Olivia’s developmental team. It was then we began learning the language of Cerebral Palsy. From there our village grew. We began meeting fellow parents and families, each having children or siblings with extraordinary needs. I began taking Olivia to play groups in our community that were inclusive and accessible, where children and parents could connect. I developed a genuine feeling of acceptance amongst these parents. We shared information of therapies we had tried, some better than others. We offered advice pertaining to sleep, feeding and lifting. We shared our feelings and discovered a commonality; the feeling of isolation.

Our village continues to grow even still. We continue to participate in support groups for families raising children with extraordinary needs. If you have never attended one, I recommend you do. These groups offer support, understanding, and community for everyone involved.

We all need to feel accepted, supported, understood and heard. This is even more true for parents raising children with extraordinary needs. If I can give any advice to family members or friends who feel unsure how to help a family they know raising a child with exceptional needs; just be there for them, validate their feelings, offer to play or hold the child so the parent can take a shower or finish a hot cup of coffee. Don’t feel sorry for the family, celebrate their new baby! This child will face more adversity in its life than you will know, so don’t add to it. Be the change, be accepting, be supportive, be inclusive. It takes a village.

Why I talk to My Daughter About Cerebral Palsy

I have always know since I was young that I had asthma. Some of my earliest childhood memories are of my frequent stays in the pediatrics ward of the hospital under an oxygen tent.  My parents spoke to me about the limitations it could cause when I over exerted myself, but always encouraged me to never stop participating because of it. I grew up never feeling limited, but always aware of my body and learned to listen to it, and respected the fact when I needed to slow down.

This is why I talk to my daughter about Cerebral Palsy…

When Olivia began school, my husband and I were  adamant she be included in every aspect of the experience.  We were fortunate to have a support team that shared our beliefs.  Obviously we knew she wouldn’t be running through the schoolyard, playing chase and climbing up and down the monkey bars; but this didn’t mean she couldn’t participate in the experience of a fun filled afternoon with her fellow classmates. We provided bubbles, small kites, wind toys, etc. Anything we could find that Olivia could use and share in the fun with a friend or two.

Olivia will be five this October. When I speak to her about how Cerebral Palsy affects her body, I do it in an age appropriate way, so she can understand. For instance, one time I got her doll from the toy box. It was a soft bodied doll with cute little yarn braids and a floppy hat. I showed her the dolls legs. I said,  “Do you see how soft doll’s legs are? If I stand her up, she falls down. If I put this book behind her, she stands up.”  Olivia smiled. She really watched my explanation and focused on doll’s legs. I then proceeded to tell her, “Olivia, you’re legs are “soft” or not as strong too. If Mommy stands you up, you fall right?” Olivia smiled in recognition of a response. “So this is why you stand really great in your standing frame! Your frame is like doll’s book.” I tell her,  “this is because you have something called Cerebral Palsy. Your muscles don’t work the way they should.”

Being able to speak to our daughter about her limitations absolves the elephant in the room. Olivia is a smart kid. She knows she is different in some ways, but because of our little conversations she is more confident and doesn’t let it get her down.  We encourage her to participate and to put herself out there. She is a great kid with a wonderful personality! By understanding what it is that affects her, she can become more comfortable in her own skin and continue to spread awareness in her own way. Will this be the answer for everyone in the same situation? No….maybe not, but for our family it was essential. We would not allow Cerebral Palsy to be a dirty word. We would not allow Olivia’s diagnosis to become taboo. Cerebral Palsy is a part of her. It does not define who she is or who she will grow to become. 

Sit down, buckle up, and HANG ON!

Roller coasters terrify me.  I mean I can’t even think of being on one and immediately my palms begin to sweat, my stomach becomes noxious and my heart feels like its going to beat out of my chest. The mere thought of being propelled at a ridiculous speed down a rickety track and then suddenly dropped to a death defying plunge,  to then be ripped back up into the atmosphere, twisted and turned in every direction….well, let’s just say…you would NEVER get me on a roller coaster in a million years!

Or,  so I thought.

Funny how the Universe works….

The day Olivia was born, our ride began.  We sat in that proverbial seat, locked the bar into place and began the journey down the rickety track. I thank God everyday, we didn’t have to face this journey alone, we had each other.

Being parents to a child with special needs, feels every bit like riding a roller coaster.  You have genuine fear, not for yourself, but for your child.  The fear of the unknown…fear for their health, fear for their future, and fear for their acceptance.

You rely on each other for strength and  support, through the highs and lows.  Sometimes that proverbial ride can reach a high, that puts you in a state of elation.  You feel so much hope and joy and feel as if everything will be fine. Then suddenly, as quick and unexpectedly,  the high is no more. You have just been thrust into a death defying drop…your heart sinks and everything around you is moving so quickly,  you can’t see where the drop stops.  All that gets you through is hope.  You know circumstances are out of your control, but you can control how you feel in that moment. You feel hopeful…and what drives that hope are the moments that first developed it.  The first time your child smiled at you,  when before that moment, months before that moment, your child struggled to produce a smile; or the moment you were told they would never walk, and after months of therapy and months of enthusiastically motivating them, through some miracle, you witness their slow and unsteady, yet methodically thought out step!

Like I said before, I absolutely hate roller coasters,  however this ride is an exception.  Yes, there were times that truly tested my courage,  but taught me to be a stronger mother. I am thrilled we were chosen to be apart of this ride, because folks…it’s AWESOME!