Look Beyond The Package

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Two years ago I met another mother of a child with Cerebral Palsy, while at a playgroup with my daughter.  The woman was quiet and soft spoken and wore this look of sadness constantly.  Sometimes when she would speak, her voice would crack,  and she’d take a moment to catch her breath. I felt a great sense of compassion for her. It was easy for me to identify that this woman was grieving.  She had shared with me once, that her child was she and her husband’s first and they had tried to conceive for many years prior. Her daughter was a sweet little thing. She had light brown hair with big curls, and an enormous smile.  My Olivia was drawn to her immediately. They would take turns smiling back and forth at each other and if they were laying on the play carpet next to one another,  they always seemed to reach out to touch their hands together.

The mother and daughter only proceeded to attend two more times after this meeting, then she never returned.   Although I didn’t know her as well as I would have liked, I think of her and her daughter often. 

I would have liked to have been able to help her get through her grieving process. I would have told her she wasn’t alone and that what she was feeling was completely normal. I would have shared our story and confided in her that I was where she is, only a year earlier. I would have introduced her to our family social worker for help with counseling. I would have been a friend, if she needed one.

I feel it important to share this story with everyone.  I believe every parent of a special needs child, experiences some aspect of grief, either early on or presently.   Possibly some may not even know or understand their feelings. It’s important to know, you are not alone.  It’s often hard to reveal these  emotions to  your partner or to your  family,  but it is pertinent that you seek counseling.  Through counseling, you are able to navigate through these feelings and achieve a closer, stronger, more loving bond with your child.

A truth that I have learned and deeply believe is this:  it is often times difficult to look beyond the package, to truly appreciate the gift that lies within.

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Ever Wonder What It’s Like To Be A Special Needs Parent?

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Do you remember when your children were little and you handed them a crayon and a picture to color for the first time?  You probably gave them instruction to do their best to color within the lines because that’s what we were taught to do as kids. They probably grasped their tiny fingers around the crayon best they could, then began scribbling and coloring all over the page, weaving in and out of the lines. You probably took a moment and thought you should bring attention to the fact they were coloring outside the lines, but didn’t because you could see they were loving every minute of it, they were proud of their creation! It had parts left uncolored, areas that were scribbled and lines that couldn’t contain the marks of the crayon, but that didn’t matter because in that moment you didn’t see fault or difference in their work, you seen a work of art!

Raising a child with special needs is like living in this moment all the time. It’s the best way I can describe it to other parents. Our daughter Olivia has taught us to look beyond what society defines as differences, and to discover value and beauty in individual ability. 
A person might look at my daughter and say she is different because she can’t speak.  I would say, she may not speak, but she is an excellent  communicator.  She has the ability to allow another person to feel what she is trying to express through the use of eye gaze and facial expressions.

As a parent of a special needs child, I will let you know, all we special needs parents want, are for our children to be accepted for who and how they are.  We don’t want sympathy for our kids, we want compassion.  By the way…BIG difference! Just allow them to be themselves, don’t look at them with an “I’m so sorry this happened to you” look because I’ll tell ya, they don’t need your pity.  We parents don’t need your pity.  Our kids need to be allowed to be themselves, to be valued and respected, and to enrich society with the abilities they were given.

The night sky would be awfully dim, if there were only one star in the sky.  It takes millions of individual twinkling stars to make the night sky radiant.

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Educational Assistants a.k.a “Miracle Workers”

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This post is dedicated to two women  I feel are angels on Earth.  They are my daughter’s Educational Assistants.   I feel these women get overlooked for the truly remarkable job they are doing.  If you asked them,  they wouldn’t call it a job…they do it because they love the kids they are helping. Well I am pretty damn grateful my kid has these ladies!

When my husband and I decided we were sending Olivia to school in September, it was a decision that didn’t come easy. We feared for our nonverbal, vulnerable little girl.  Would she be understood? Would she be treated with love, kindness and respect? How would she make friends?

The two women who were assigned to care and support Olivia at school would become more than just her educational assistants, in our hearts, they became her angels. These women go above and beyond everyday, not because they are “just doing their jobs”, but because they care.  These people are unappreciated miracle workers! They see the ability in our kids and help them to achieve and succeed.  I see the joy they bring to Olivia everyday in the smile on her face and the excited giggles in her laugh.  I see a new sense of independence in my little girl’s eyes because they worked relentlessly to help her learn to grasp a crayon, in which she struggled so much before.  I see how easily Olivia has been accepted by her peers because they encourage the children to interact and participate in Olivia’s activities. And most important I see the pride and admiration these beautiful women share with us, when Olivia has overcome a challenging hurdle.  

Ladies, in case you have not been told enough, I APPRECIATE YOU! I thank you for the remarkable work you do each and everyday, for the compassion and love you show our daughter, to the relentless hours you commit to helping her succeed, for the grace and kindness you share with her.  You will both forever hold a special place in our hearts.
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We Could All Use A Little

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Patience…it is a quality that I work hard to achieve daily.  The moments I find most challenging are those when I need to obtain this quality with complete strangers and their complete disregard for common courtesy and downright human compassion.

Often the most challenging of circumstances occur when I am out in public with my children.  They are a happy, sometimes rambunctious crew, and like all other kids love to venture into the toy sections before beginning any real shopping. This is when Kameron and Nicholas start scouting out potential birthday, Christmas, or whatever possible presents for whichever holiday/special event is coming up. They usually will take toys off the shelves and bring them to Olivia, in which they will crouch down to her level and help her touch them. These are the moments when we get the “hmm something must be wrong with that little girl” looks or better yet the folks that actually open their mouth and say those words to me.  In that moment of circumstance, it takes everything in me to not open the biggest can of Momma Bear Whoop Ass they have ever experienced! Now…. in the beginning, when Olivia was a baby and individuals would comment on how she “seems a little big to be still carried around” or why she wasn’t crawling or walking, I always reacted emotionally and borderline psychotic to their insensitive remarks.  If they only knew how difficult her journey has been.  The accomplishments she achieved and the hurdles she had to endure getting there; but, people don’t see the gift, they only observe the package it’s wrapped in.  This was and still is a difficult truth for me to accept. Unfortunately this is also my daughter’s truth, one that will be with her throughout her life. I had to make a choice and my choice was, I could continue feeling like people are insensitive, ignorant morons,  or choose to believe there is good in everyone and sometimes words can escape us without fully understanding the magnitude of their message. I decided when these situations arise, I would have patience and respond in a way that not only advocated for my daughter,  but also educated the individual in hopes to prevent another family from having to experience this discomfort.  I still get blindsided by the audacity of the remarks, but now I take a deep breath before I respond.

I have learned that people are ignorant to what they fear or can’t understand.  As hard as it is to believe, there are still those in society that fear difference.  So instead of lashing out at these people, I take a moment to explain that my daughter has a muscular disability called Cerebral Palsy.  Sometimes these short interactions turn into memorable conversations.  Sometimes the words never penetrate the thick skulls where the insensitive remarks generated.  Unfortunately I’ve also  learned it’s impossible to enlighten the entire population. But if one person learns to look beyond the difference and see the true beauty, than taking the higher road of patience panned out.

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“Patience is a form of wisdom.
It demonstrates that we understand and accept the fact that sometimes things must unfold in their own time.”~Jon Kabat-Zinn

Rudolph the Disabled Reindeer

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I want to share a story with all of you.  It is of my now six year old daughter Kameron, who at the time was about four and a half.  She was having some trouble with trying to explain what a disability is to her friends at school, she was trying to explain to them that her sister has a disability.

I asked her to think of a favorite television character or character from a story that may have some differences from those of other characters.  I thought this would help in her understanding and explaination. Her reply to me was this:

“Mommy, I think Rudolph the Red Nosed Reindeer has a disability. His nose doesn’t work like all the other reindeer. He has to learn to do things with his nose differently than the rest of the reindeer and in the end all of his friends are happy! They like his red nose.”

I was floored by her response.  It was perfect! The more I thought about, it was the perfect analogy to help kids understand that some of us are born with differences.  These differences can sometimes cause limitations, however when we give an individual the opportunity to excel, we see their true abilities.  And really, doesn’t the song tell us that, “Then one foggy Christmas Eve, Santa came to say: ‘Rudolph with your nose so bright, won’t you guide my sleigh tonight’.” 

It is a traditional song we have all heard and sang along to, but did you ever really listen to the message? I will forever think of a disabled reindeer, who sadly was bullied by the society he knew, but it took the voice of one to change that. 

If each us took the time to see every ability, wouldn’t that brightness abolish any fog that remained?