The Struggle Is Real

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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.

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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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How a Sweet Little Boy Made Our Vacation Extra Special

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We are on a mini vacation with our little munchkins. While enjoying the water park yesterday, a young boy made his way across the pool to me and Olivia.

“Hi” he said.
“Hello”, I smiled.
“She is so beautiful. What’s her name?”
Smiling and feeling a bit of an emotional lump in my throat, I reply, “Yes she is. Her name is Olivia.”

I never know what to expect when we go out in public. Stares are a given, especially from adults and older children; but questions are rare and when they come I can never predict if they will be asked sincerely or with ignorance. This sweet little boy’s demeanor was so kind, I almost teared up on the spot.

Olivia immediately smiled back at this sweet little boy.

“Hi Olivia. I bet you are in school?” he asked her. Olivia smiled back letting him know, “yes”.

This little conversation continued a few moments longer between them. He never once brought attention to the obvious, that Olivia didn’t answer one of his questions verbally.

After he swam away I realized this was the first time Olivia’s disability never came into conversation. He didn’t ask or even seem to care that she didn’t speak. He accepted her as she was.

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The Girl Wants To Be Heard, People

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As a sit here smiling as I type, and to be honest, struggling to form my words; I keep playing back the sweetest, yet hilarious “Olivia Moment” from earlier today. After these last eight weeks, I needed a good laugh.

Before I go there,  I just want to say how proud it made me feel. I mean, for the last four years and five months; I’ve wanted one thing for Olivia…to be “seen”.  As a parent to a child with special needs, you see the judgements from other people’s stares; knowing that if they could see passed her wheelchair, or her orthotic braces, they would really see the beautiful, funny, sometimes mischievous,  intelligent, and loving little girl that is beneath all of those layers.  But today, Olivia taught me something. She taught me, she will make herself seen! She will show the world what she’s made of…for now, she’s gonna show them what it means to be in kindergarten.

Today, my nonverbal child became the disruption, the “Class Clown”!

Yup, you read that right.

As the class gathered on the carpet for quiet time, the teacher turned on some soft, relaxing music. All the kids sat quietly, Olivia included. When the entire room became somber and at ease; Olivia perked up and let out the biggest, most excited laugh; becoming giddy, knowing full well she was getting a rise out of her peers. She was being a typical four year old, who c’mon let’s be real…can’t sit longer than a flea on a hot shovel. 

I can’t help but be excited, to see what other ways, Olivia will teach us all about her.

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Sometimes I Just Don’t Know….

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Often times when things occur with Olivia, it is a difficult challenge to determine what exactly is the cause or symptom. Why? Because Olivia is nonverbal and due to lack of muscle control, is unable to use sign language or point. We have been working diligently the past year to teach her to communicate effectively, using an Eye Gaze Board. The board isn’t anything too technical.  It is made from plexiglass and has velcro strips adhered to the surface, so picture cards can be easily attached. The board is a great tool for giving Olivia opportunity to participate in decision making, such as choosing an activity like painting or reading, but I find it difficult to use when she is in pain or some other form of discomfort. Usually because of her demeanor in these circumstances, she can’t concentrate on anything but the pain at hand. We are then left with the infamous guessing game….

There is no greater form of stress than to witness your child suffering from pain, and knowing they have absolutely no way of telling you where it hurts or how to make it stop. This past week has been an emotional rollercoaster,  watching Olivia struggle with eating and the struggle to keep it down to watching her try to deal with random spasms occurring, in what I think, was her hips or maybe her thighs. Many nights were spent either cleaning up vomit and changing bed sheets or performing stretches and warming heating pads to bring some relief to her.

Five nights have past and last night was the first time she slept through, peacefully. She awoke this morning bright eyed and ready to take on the world. These are the moments that set me spiraling because, as thrilled as I am that she is showing signs of improvement, I am still puzzled as to what was the cause. Virus? Or a product of Cerebral Palsy?

Cerebral Palsy…..

When Olivia is at her healthiest, I often forget that CP is a part of her. I can’t help it. I get caught up in her laughter and contagious smile or how she can be oh so impish when playing with her brother and sister. I hate how reality jolts us back into perspective; robbing us of that beautiful peace of mind.

This is the unfair reality that tugs at my heart strings.

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Words Not Spoken

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Olivia has never said the word, “Mama” or spoke the words, “I love you”.  My daughter is nonverbal, but she does not lack communication.

Even though none of these words have ever passed over her lips, my heart heard and felt each and every one. 

You see, her eyes communicate every emotion, every thought, every word.

It is true when they say, “the eyes are the windows to our souls”.  Every time I look into those awesome blues, I see love, joy, and wonderment for the world around her.

She portrays more in a single glance, then I ever could in a thousand words.

I don’t know if her speech will ever develop,  it’s something only time will tell.  However, I do know this…”Optimism is the faith that leads to achievement.  Nothing can be done without hope and confidence” ~Helen Keller
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