Ramblings of a Sleep Deprived Mom

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When you become a parent, your appreciation for sleep changes. You’re no longer that asshole that took for granted the privilege of uninterrupted, hybernationlike zz’s. No, you know better now. Sleep is beautiful. Sleep is crawling into a soft, cozy cacoon of flannel and cotton sheets, surrounded by warmth and utter gloriousness  (if that’s even a word), only to drift into a deep coma of REM where you are completely unaware of the pool of drool forming on your pillow while you bask in the dreamy sanctuary of heavenly slumber.

Ahhhhhh……

I miss sleep.

Who am I kidding, I am deeply mourning the loss of sleep.

I cry, heck…I sob like a toddler whose been refused a treat at the candy store, with the quivering lip that repeatedly asks, “w-w-whhhhyyyyy????”

Buckets of coffee can’t undo the affects of lost sleep. The large grey, zombie like circles that surround my eyes, the endless yawning, drunken stupor and frazzled look of despair are still there. There is only one cure for all of this. Sleep.

To all my fellow sleep deprived, caffeine infused, walking vegetables of the earth; I feel you. Fist to chest, respect.

May the sleep be with you.

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Taking A Break Before Having A Breakdown

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Too many times special needs parents forget to take care of themselves. I know because I’m one of you. We are so busy focused on our child’s needs that our own needs come in dead last. We struggle with fatigue, ridiculous amounts of stress, and at times are battling feelings of depression. We become consumed by our child’s needs and feel guilty if we try to put our needs first.

I’m going to tell you something.  It’s OK to be selfish once in a while. In fact it’s necessary. You will be a better support for your child, partner to your spouse and overall better person, if you just give yourself a break. And folks, this isn’t just good advice for special needs parents, it’s good advice for ALL parents.

I understand everyone’s situation is different. Maybe you have family that can help out, but you’ve been too shy to ask or maybe you don’t have a family member or close friend you can ask to come sit with your child, so you can grab a much overdue nap or run a few errands, just to get out of the house for an hour.  But that’s ok. There are many highly trained individuals who specialize in providing respite services. If you don’t know where to start or how to find these people, begin by speaking to your child’s development team. Often times they know of nursing students or therapy students that are well trained and looking to make a few extra bucks. There may even be students doing work placements with them that are trying to break out in this field and are looking to do respite full time. Another great resource is talking to other special needs parents and finding out who they use; maybe their worker would like to pick up a few hours working for you too.

If your budget doesn’t allow for respite services, you can look into funding through your province or local and national organizations that grant this type of funding.

If none of this applies to your situation than look into community groups that offer special needs playgroups where you can talk to other parents sharing the similar experience; maybe you’ll even connnect with one and start a friendship, or special needs support groups where you can at least have a platform to share your feelings. It might not be the complete break you need, but at least you are among those that can understand what you are feeling and can lend an ear.

In the end my point is this….take a break. You owe it to yourself, your child and your family.

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Beating The Odds

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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.

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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

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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2016: A Great Year For Change

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Well winter is here and a new year has begun. A great time to evoke change! The change I want to see is in accessibility. 

Oh the joys of winter. Walking with a wheelchair over icy banks and navigating around inconsiderate vehicle owners; who block sidewalks (not even bothering to use their entire driveway), forcing us out onto the roads. Because ya know, it’s so easy maneuvering 70 lbs of steel and kid around the ass end of your bumper.

And those icy banks? Don’t even get me started. I mean, how hard would it be to, I don’t know let’s say, NOT dump that load of snow at the end of the walk way!!?? Why not put it on the grass side of the sidewalk or anywhere else!? I’m not a professional snow plow operator, but isn’t the idea to CLEAR areas, not to obstruct them? Call me crazy, but the service you are providing is called SNOW REMOVAL.

Oh and before any nay sayers start harping about why we don’t take the bus? Let me tell you something, we do. We do on stormy days and days that are not fit for walking. But on beautiful, crisp winter mornings, we like to walk. Because it’s everyone’s right. End of story.

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Accessibility is difficult to come by. Period.

You would think it to be only common sense to have the day to day luxuries like walking to school or being able use a public washroom, available to all abilities, but in reality it’s not!

Have you ever tried taking your five year old to a public washroom to change their bottom? Most of you probably have never had to do this. I have. This is our reality and do you know what we are faced with? We get to carefully attempt to change our child on a tiny Baby Change Station, located on the wall of an almost too small accessible washroom; not capable of housing a wheelchair plus Momma plus child. Ah and did I mention, my daughter IS NOT a baby! In a  few occasions the change station has not been within a washroom at all, but outside the stall, near sink areas. I don’t know about you, but I’m not fond of showing my hoo-ha to the public; neither should my daughter!

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Does this look comfortable to you?

Our only other option is to change our daughter on the floor of our van. Where is the dignity in either of these choices?

Accessibility shouldn’t have to be a luxury given to few. It is a right for all! So why is it that society has not fully invested in equality for everyone? Why isn’t it something we all should be striving to achieve? Is it because it doesn’t directly affect you or someone close to you? Maybe you weren’t aware there is a great need?

This is what I want to achieve today and the days coming. I want you all to look around at the environment you live, work, shop, frequently visit, restaurants you eat at; and think of children like my daughter, in a wheelchair, still in diapers;  young adults with severe needs, individuals with walkers, canes, stability issues, elderly relatives. If they walked down your street, worked in your office, shopped at the same bookstore or clothing store, ate at your favorite restaurant; could they do so safely? Comfortably? Be respected and have their dignity preserved? If you said no to at least one of these, change is needed! Change must happen. Because it’s 2016 folks!