My child is disabled but not defeated. | Three basic rules to raising a physically disabled child.

It is 6:50 in the morning, Friday, and a chilly breeze sneaks through the window. My son and younger daughter are sleeping soundly. My eldest, however, is up and already yelling at me because I apparently didn’t tell her about the doctor appointment, I set up for today.  I reminded her Monday. Sixteen years old, were the heck did the time go? She is like all teens, hardheaded, thinks so knows all, and bratty, but she is also the most kind and gentle teenager I know. She isn’t an honor roll student, or a star athlete, not because she doesn’t, or didn’t, want these things, but because life has a way of changing things.

In 2006, she was diagnosed with Limb Girdle Muscular Dystrophy, type 2D, and our lives changed forever. Finding the diagnosis was one of the most agonizing processes I have ever been through, and then add her mother and I going through a divorce, humph, I barely made it through, but she, my little soldier, smiled and stayed up beat the whole way through. That’s when I realized kids can be the most resilient creatures on this planet.

It hasn’t been easy trying to be there for her. Sometimes, Dad just isn’t enough, but I try to be. Sometimes, she needs more than me. The only thing that I have been able to do is be there, and teach her. I guess that is all we can do sometimes. I have pushed her so hard sometimes that she wouldn’t even talk to me. I have cried with her, laughed with her and told her to keep fighting. When I get selfish, she gets mad but forgives me. As a parent of a disable child, you can never stop learning. You must always adapt.

These are my three rules:

Treat them as you would any other child.

I have found that children with physical disabilities are, more often than not, more intuitive and more intellectual than others. Not all the time, kids are kids, and they do or say down-right dumb stuff, sometimes. Is this the byproduct of their disability, I am unsure, maybe, it’s just something I noticed being a part of this community. Their sarcasm and humor levels can be quite high, as well, and I’d have to say that it’s a better mechanism for dealing with things than depression is. What is my point? They get it! Don’t make them feel smaller by making them feel inferior in intellect as well. Ground them, take away their iphones or other fun devices, and give them praise when they deserve it! Do this in spite of not wanting to hurt their feelings. Don’t be mean, be firm, be loving and caring, but don’t ever be a push over. That doesn’t help your other kids, it won’t help a child with a disability either.     

Teach them self-reliance, as much as possible, even when it hurts to watch.  

A child with a disability still needs to fight for independence, and that should be as much independence that is both physically and mentally attainable. Even the smallest accomplishment can bring great joy to them. As with all children, and maybe even more so, they need to be prepared for the harsh realities that may come, which, is why self-reliance is so important. They must learn to advocate for themselves without the fear of being different or the fear of feeling like a burden to others.

Teach constant learning and self growth

Much like self-reliance, constant learning and self growth will prepare them for the realities of the world. Children with a physical disability will have limited options in some fields of work, but this doesn’t mean you take the stance that they should depend on a state check for the rest of their lives. When I say constant learning and self growth, I mean to say, learn as much as possible about yourself and the world. This is not only good for your child but if you do it as well, it may make things easier for you, too. Prepare them for college and beyond! Their mind is their best weapon and their best defense.  

In the end, your child is going to grow up. They are going to want to do adult things. You must help them prepare for the challenges that children without disabilities may never know, it is more than just our job it is our duty, as parents, to push them just as we would any other kid. 

#beingdad

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The dysfunction of the school busing system.

Having kids comes with a plethora of mixed feelings. As parents we can go from “I love you so much, I want to squeeze your head until it pops” to “Oh, my god, I want to squeeze my head until it pops”; but hey that’s what we signed up for, right? Kids are kids, and you ride the waves with them. What gets me more fired up, is the idiotic people that we depend on in the system that surrounds us (I say this with the understanding that not all people in the system suck, there are a good many, but not all.) You may have heard the expression “it takes a village” when it comes to raising kids. Well, what if that ‘village’ is full of spastic ass-hats without any semblance of intellectual integrity, let alone common decency. What to do then? 

Recently, I had the great pleasure of being treated as an insignificant piss-ant by the monopoly service company, First Student. I point out that they are a monopoly because our tax dollars go to pay them. This monopolized situation, leaves zero competition that would facilitate any form of repercussions for not providing any proper form of customer service, much like the Government itself, and the result we get is what my family and I have experienced, but I digress. We have had issues with a Bus driver, one who has been rude to my wife, myself and my child. This driver has went as far as stating, to my seven-year old child, that my wife and I are dumb and unfit parents. While, I will admit there has been some difficulties throughout the year, that in no way gives license to berate a child, nor does it give license to retaliate by being late every single day more than fifteen minutes or so.

I am actually considered writing the CEO, Mr. Douglas A. Carty, but after speaking with the manager at the bus garage, I can not be so sure anyone in the company would have any idea of how to speak to or handle a customer complaint issue. You see, I called to talk with someone about my concerns, and rather than listen to my issue, I was first given reasons why I was being rude and how “so many parents are like me”. I was upset and I kept trying to explain myself, but she kept speaking over me to explain why I was wrong and needed to listen. All I wanted to do was explain how I saw the situation, and how after reading a write-up from the bus driver, that I felt we were being unfairly treated. The manager proceeded to, in a very condescending tone, tell me to enjoy my day and that she didn’t have to hear my point of view, disconnecting the call. So, my next step was to contact the board of education.

At this point, we still have been unable to contact the person we were told to speak to there, it has been over two weeks. The frustration is maddening, but rather than lash out I am writing this. I am venting to you, oh reader, to maybe find solace in a mutual pain. It is my hope that at some point Mr. Carty, or his underlings, hear of this and adjust their procedures accordingly, or better yet have the government stop filling their pockets with our tax dollars, if the exchange of services is going to be so deeply dysfunctional. 

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