I Am Olivia

Standard
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
Advertisements

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

Standard

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

Standard

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.

image

Beating The Odds

Standard

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.

image

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

Keep Calm And Turn On Barney!!!!

Standard

Dinnertime in our home is usually a toss up between a laid back family dinner to a full blown, chaotic gong show! A lot has to do with what type of mood Olivia is in. Today for instance, she was tired from a fun day at school; come 4:30, she was done and had it with the world! There was only one direction this evening was heading….Gong Show! Tears, sobbing and rivers of snot on top of trying to bust out of her chair meant epic meltdown. (Redhead….enough said)

Ugh…good times…

image

I’m not gonna lie, everyone in the house reaches high levels of stress. Even our dog starts howling and barking, making the situation that much more interesting. It’s wine o’clock somewhere, right?

I have become a huge fan of Barney. Yes I’m talking about that big purple dinosaur that bounces around singing, asking everyone to be his friend. That beautiful purple bastard is my saving grace!

image

Olivia just has to hear his voice and voila, all is right with her world.

image

The tears slow and the screaming stops. Thank you Barney! You are my hero.

image

We Really Aren’t That Different

Standard

Today I had the privilege of sitting in with a fabulous group of special needs parents for a support group meeting. To be honest, this was my first time. As much as I had always wanted to organize or be able to participate in one in the early part of our special needs journey, one simply didn’t exist or come to fruition. Why? Well even though I felt every parent with a special needs child could benefit from information provided by seasoned special needs parents, not every other family shared in my opinion. It took some questions and input to understand how some parents would find a support group to be quite difficult to handle. 

The reality is each one of us are at different stages within our journey. Some of us are grieving and maybe extremely angry and lost. Some of us are dealing with medically fragile children and the thought of hearing another parent speak of their child thriving is disheartening to us. Some of us are still struggling to understand our child’s diagnosis and how to properly care for them. Some of us lack the proper resources and are struggling to have a few moments to care for ourself and our relationships, let alone be able to dedicate an hour per week to a support group.

Whatever your reason is….it’s absolutely ok.

What I would like to say to those who are on the fence about support groups; maybe not all of us have been where you’ve been or seen what you’ve had to see, but we have all been in that chair or office when our child’s doctor delivered a diagnosis that would forever change the life we thought we’d  have with our child. We have experienced loneliness,  loss, anger, sadness,  frustration, emotional breakdowns, moments of joy, happiness and celebration when our children overcome. We have had to fight for inclusion, acceptance,  equality and awareness for our children. We have struggled with marital relationships, friendships and family connections. We have been impacted financially by costly equipment,  home renovations, alternative therapies, and resources that were not covered by traditional means; like medical insurance. Believe it or not, we get you. Our children may have differing diagnosis, or similar. It doesn’t matter. What matters is we want to be there for you. We may have more in common than you think.

What I got out of today’s group was incredible. I felt like I was among my people. Each person in that room had a child with a diagnosis completely different from Olivia’s, but we all shared similar feelings, struggles and celebrated triumphs that were achieved. I also took away new information on products and resources I never knew existed. It was a safe space to share if I felt to, or to listen and absorb. You take away or put in what you choose. No pressure. No judgement.

I’m looking forward to the next time…

image

It Takes A Village

Standard

We have all heard the expression, “It takes a village to raise a child.” This couldn’t be more true for raising a child with special needs. When I look back at all the medical professionals, therapists, support people who have impacted our lives, I feel overwhelmed with gratitude. Without the help and guidance of these individuals, we would have struggled to provide our daughter with the proper support and care, which she so needed.

When you become a parent for the first time to a child without extreme needs, you are flooded with helpful advice from family, friends and other seasoned parents. But, when you become a parent to a child with severe needs, medical fragility and developmental delays; suddenly you feel isolated and alone. There is no one rushing to assist you in supporting your child because often, many can’t understand your situation because they have never experienced it before.

When we were first introduced to Olivia’s support team, I honestly wanted to jump up and hug them! The immediate sense of reassurance they instilled, allowed us to believe that there was hope and possibility of a future filled with opportunity for Olivia; whatever that may be. They became our village. They not only worked hard to support our daughter, they were also there (and still are) for us!

Without the dedicated and compassionate support they gave to our family, we would never have truly seen our daughter beyond the Cerebral Palsy. Today, these wonderful people have become as close as family to our hearts. Although they have countless clients, work long hours away from their own families, and put in an astounding amount of time to love and support our kids; they never make you feel unimportant. I have always felt like I had their undivided attention and literally could call them in any time of crisis (which I have). 

To all of the members of Olivia’s support team, I thank you from the bottom of my heart for being the best village any special needs family could ask for!

image