Communicating At A Glance

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In previous blogs I have talked about my daughter being nonverbal and how being nonverbal doesn’t always mean unable to communicate.

Communication can be accomplished in many different ways,  such as through body language, verbal language, sign language, eye gaze interpretation, switch activated devices that “speak” for an individual, and this is just to name a few.

When our daughter Olivia was diagnosed with Cerebral Palsy and we had learned how muscle control and cognitive function can be affected as a result of this condition;  we were eager to assist in her development of the abilities she could strengthen. The first step was to understand how Olivia communicated.

We didn’t know if verbal language would ever develop, but what we did know was how alert and focused Olivia was within her environment. We quickly discovered her ability to control her eye gaze. She could track objects easily and appeared to pause on objects she was most interested in. Olivia’s speech/language therapist and occupational therapist suggested we build communication from this.

We began by giving Olivia the opportunity to choose between a “preferred item” and a “non-preferred item”. For example, her therapist presented her with a piece of tissue and a bright red ball. This exercise was to determine if Olivia understood her ability to choose something she really wanted, by looking at the object she favored most. It didn’t take long for her to pick that bright red ball over a measly piece of tissue. This was a profound moment! We learned that not only did Olivia completely understand the instruction of the exercise, she could also make choices!

Olivia has been practicing Eye Gaze communication for the last three years. Because she communicates so often using eye gaze, Olivia’s facial expressions have become more animated and bright. She will often smile for a “yes” answer or become expressionless for a “no”. We have learned to focus clearly on her eyes when we interact with her; building upon our ability to interpret what she is trying to tell us.

If Olivia has taught us anything it is this, open your eyes to the world around and you will hear what I’m trying to say.

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Counting My Blessings

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I don’t know another person who gets as much enjoyment out of fishing, as my daughter Olivia. I mean, c’mon….does this picture not make your heart smile?

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Everything Olivia tries or is involved in, brings awesome smiles like this one. It doesn’t matter if we are creating art through finger paint or heading full speed down a park slide; she enjoys every beautiful moment of life.

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Life…hmm, yeah, precious and yet something easily taken for granted.

Each memory we make with Olivia, I remember to be thankful. I remember how we nearly lost her; how we prayed for God, the Universe, whatever greater power that exists, to keep her with us.

Thank you! Thank you! Thank you, for this wonderfully sweet and happy child. A little girl with a gifted smile and contagious spirit. A child that has been a teacher to us; educating our minds to always have hope, to recognize each individual’s abilities, and that living “outside the lines” is a wonderful life to live!

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When I look back to the days of doctors telling us to be prepared for the milestones she may never reach and the heartbreak that may follow, I can’t help but wonder why say those things at all. I mean, I get the whole “prepare for the worst” case scenarios, but c’mon…this wasn’t, nor ever will be, the worst.

Our lives are richer and happier everyday because Olivia gets to be our daughter. I cherish that gift. We are completely and wholeheartedly blessed!

Success Is A Team Effort

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June already. Where have the last nine months gone?

Wow….

You know, I remember fondly, that first school day in September; the serious,  yet extremely content look on Olivia’s face when we entered her classroom. I watched her eyes as they carefully scanned the room, as if studying every detail.

As inquisitive as she was, I was equally nervous and anxious. We had every possible school transition meeting prior to this day. Plans and procedures were strategically mapped out. Modifications to the school environment and specialized equipment were put in place. Qualified trained staff were assigned to her.

So why was I so scared?

Well as a parent to a child with special needs, extremely high needs at that; it’s a difficult hurdle to overcome. Trusting another with the care of my child was terrifying for me. Would they recognize the signs of a seizure? What if Olivia begins to choke when they feed her? How will they read her nonverbal queues? How will the other children respond to her?

It was an immense relief being able to volunteer.  I appreciated the amount of support the school gave by allowing me to volunteer in Olivia’s classroom. It quickly put me at ease seeing how happy she was. It wasn’t long before she made friends and to see those friends quickly accept her for her.

This time was both beneficial to myself and Olivia’s school team. We worked together building a relationship that would strive to support Olivia’s success.

Were there bumps in the road along the way? Sure there were. Part of building a strong relationship means learning from mistakes that were made. As Olivia’s mother, I was her voice. I, along with my husband; communicated continuously with Olivia’s school team and they did the same with us.

When you make the decision to send your child to school, you need to begin a positive and professional relationship with your child’s teacher and other support staff. Communication is the key to a successful partnership that will benefit your child’s progression in reaching their full potential.

Looking back on these last nine months I can’t help but fill with pride for my daughter. School has brought out a sense of independence and added determination in her. I have watched her struggles transform into successes and I’m eager to see what these following years will bring. 

For all of you that are embarking on this new journey with your child remember you are their voice. Communicate! Communicate! Communicate! Working together, parents and school team, you will give your child the best chance at success!

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This Will Be The Fourth

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I have seen the inside of an OR more times than I’d like to admit. This will be Olivia’s fourth procedure and her fourth time being put to sleep. It’s the fourth time I put on one of those funky OR gowns with the poofy mesh hat and held my baby’s hand while the doctor held a mask over her face to put her to sleep. It’s the fourth time I’ll sit anxiously in the waiting room, outside the recovery area, patiently waiting the surgeon’s arrival to let me know everything went ok.

It never gets easier…

The reality is, this is a part of Olivia’s life. A life living within a body that fails her. A life in which she will always rely on doctors to help “mend” her body.

Today, when we entered the OR,  Olivia remembered. She remembered the awkward table she needed to lay on. She remembered the masked faces that surrounded her and she remembered the uncomfortable mask they were putting on her face. I knew she remembered because those big blue eyes of hers looked up at me in fear, with tears pouring down her face. I took my baby’s hand, got close to her ear and sang her favorite song until she fell asleep.

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To My Mom

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Today’s blog post is dedicated to the woman who taught me to love with all my heart; who taught me to be fearless and to always fight for what I believed in; a woman who taught me compassion and the importance of forgiveness; a woman who I am so proud to call my Mom.

Growing up, my parents divorced when I was very young. It wasn’t easy for my mother to start over, choosing to work full time so she could attend classes at night to better her education. Her determination and courage was driven by a mother’s desire to do the best for her child. There were times that were difficult and I know she sometimes felt guilty for working so hard. What she doesn’t know is the immense amount of respect and appreciation I always had for the sacrifices she made.

Over the years I have had the privilege of watching all of the lives my mother touched. She worked as an early childhood educator for two decades, working with many children, including those with special needs. When my daughter Olivia was diagnosed with Cerebral Palsy, my mother was the first to teach us the importance of advocacy, implementing the importance of early intervention by teaching my husband and I ways to stimulate our child.

After her retirement as an ECE, she would go on to become a foster parent to many children over the years, sharing her love with kids who came from lives of crisis. Some never knowing the love from a mother until they had her in their life.

I credit the mother, the woman and the individual I am today to the woman who is the grandmother to my children, my best friend…my Mom.

I love you Mom. I hope you have the best Mother’s Day possible. You truly are the best mother anyone could ask for.

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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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A Smile Is A Precious Gift

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Did you know we never knew if Olivia would be able to smile? Most parents experience their baby’s first little crooked, curled up grins at around six to eight weeks old. It’s the first real exciting milestone in our child’s life that signifies their reaction to something positive and becomes their nonverbal way of saying, “I love you”.  Well, for us, only time would tell…

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Olivia had suffered brain damage at birth and no one seemed to really know what she would be capable of…not even smile. As badly as I yearned for that crooked, curled up grin; I knew we needed to be patient and allow Olivia to develop and reveal her gifts at her own time. Time frames and milestones didn’t matter anymore.

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Olivia taught us so much in the early years of this journey. The biggest lesson was to learn to appreciate the things we took for granted everyday. A smile is a precious gift.

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At four and a half months old, something very beautiful and downright miraculous occurred.  Olivia’s little crooked, curled up grin began to appear. Her eyes sparkled and it was as if something switched on for the first time.

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Her smile has grown to be her greatest form of communication and has been the most symbolic statement to never give up hope.

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When Olivia smiles,  you can’t help but smile too…

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Ah-Huh, I Use To Be One Of Those

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Before Olivia came along, I was that parent. You know the one. The one who looked at other special needs parents and thought, “I don’t know how you do it”. The one who gave the “look”. You know which one I’m talking about. The “I’m so sorry for you” look.

(Ugh…how I despise that look)

The one who admired the amount of patience you had. How you so graciously answered questions about your child, never showing an ounce of frustration for answering this particular question the one millionth time for probably the one millionth person that stopped you to ask it.

The one who felt embarrassed for you in the restaurant, when your child yelled and created a scene while you were trying to have dinner together as a family.

The one who never thought she would be venturing along the same journey as you.

Hi, how the hell are ya?

So this is what it’s like to be a parent to a child with special needs….

Why did I pity you?

How come I was blind to see the joy you were experiencing?

How did I miss the beauty and sparkle in your child’s eye?

Why did I consider your life to be burdened?

I am so sorry.

How ignorant I was.  We are conditioned often to view from the outside looking in that we miss the beauty of which surrounds it.

Becoming a parent to a child with special needs is like adding color to a life that was in black and white. Olivia breathed a breath of life into ours, different from that we had known. Through her eyes we have learned to focus on the importance of hope, love, patience and kindness. I discovered a strength I didn’t know I had, and a will to fight at all costs.

I see “those” parents now.

I feel the stares our family receives when we walk into a restaurant. When I make eye contact, their eyes nervously try to look somewhere else.

I get the questions now too. I’m gracious and pleasant as long as the individual asking is respectful and courteous.  I believe if stigma surrounding special needs is to change,  it’ll be us parents changing it by spreading awareness and advocating for our kids.

To all the rest of “those” parents from one parent who used to be one of you, forget whatever you thought you knew about special needs parents. You are wrong about us! We have the family we always wanted and would never change it in a million years. Our kids are not burdens, they are our love, our lives, our joy. We may have days in which we look tired, burnt out and downright flattened; these days tend to appear after a battle we have had to fight in a world that doesn’t make it easy for our children to be accepted; so forgive us if we come across agitated or anxious. We need support and sometimes a shoulder to lean, but remember we pride ourselves of standing on our own two feet; we don’t need your pity, just an ounce of compassion.

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Olivia’s Lunch Date♡

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The highlight of my day, when I’m sitting down reading through Olivia’s daily journal from school, is when I read the sentence, “Nicholas came for lunch today”.

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Everyday, since the first day of school; Olivia’s big brother, Nicholas comes to sit at her table, gives her a fist pump and asks her how her day is going. At the beginning of the school year I had no idea he was doing this, until a teacher mentioned he had been coming everyday to the kindergarten classroom to spend time with her.

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My heart instantly melted and I filled up with pride. Nicholas was so casual in response to my emotions.  He said,  “I just wanted to check up on how her first day in kindergarten was going. She was really happy to see me”.

It’s this stuff you can’t teach your kids. It’s the deep connection and bond they form with their siblings.

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It’s how I know he will always have her back and fight for her when she can’t fight for herself. And it’s how I see the love and compassion he holds for her.

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My Child Has Special Needs, She Does Not Get Special Treatment Because Of It

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I get the impression at times, from others that just because Olivia has special needs we should also be giving her special treatment. Well folks, I’m here to clarify that this is not the case.

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Yes Olivia has Cerebral Palsy and it prevents her from verbal communication as well it inhibits her ability to walk…BUT it never affected her ability to learn and understand what’s going on around her. At times we need to modify activities or assist her in managing daily tasks, but as for raising her to be a caring, compassionate and kind individual, we have not detoured away from our parental teachings.

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Olivia is raised no differently than that of her brother and sister; meaning Olivia is still taught right from wrong and at times she will get a time out if warranted. Olivia’s capacity to understand her environment is normal and equal to that of other four year old children her own age. She also exhibits the characteristic strong willed behavior of a redhead. We applaud this quality because it is this drive that will lead her to conquer barriers and hurdles that appear throughout her life. Do I overlook her temper tantrums that sometimes erupt out of this testament of will? No way!  She needs to learn like every other four year old that just because they scream for not getting their own way, Mommy isn’t going to give in to this negative behavior.

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Children with special needs need to be given the same opportunities, advantages, education, and life teachings as that of “normal” children. Under the Rights of The Child penned by leaders of the United Nations, all children are equal and are not differentiated based upon ethnicity, disability, or economical background.