My Biggest Fear And How YOU Can Help

Stop the r-word.

Stop the r-word.

Sure, at first glance, Braxton doesn’t appear to have any medical issues.  In fact, most only see the handsome, smiling baby staring back at them, but things are not always what they appear to be.  That brings me to my first issue: What does “disability” look like? Does a person need to appear physically deformed before you consider them disabled? Before you knew Braxton, did you know “disabled” people could look…”NORMAL”? There is no standard of what people HAVE to look like in order to be classified as disabled, nor should it matter what they look like to deserve respect! That brings me to my next issue: RESPECT.  One of the ultimate forms of disrespect is name-calling and using words like “retard.” Mentally Retarded was once an official medical diagnosis used to describe many individuals who were “slowed or delayed in cognitive ability” (the official definition of “retard”).  Wait a minute…what do you mean “was once an official diagnosis” ? Yup, ONCE.  “Mentally Retarded” is NO longer recognized as an official diagnosis. The term has been stricken from legislation, healthcare policies, and diagnostic terms partially due to the extremely negative connotation the word now has.  Over the years, society has taken a medical term and the individuals it was ascribed to and transformed the word in such a way that not only is it mean and hurtful, it completely demeans the worth of millions of individuals.

Finally, this brings me to one of my biggest fears.  Eventually, Braxton has to go to school.  I am terrified of that day.  I’m not afraid of him being in school, but I am afraid of the other kids he will be in school with.  We are still so unsure of what the future holds for Braxton with whatever diagnosis he may have, but I’m certain he will have cognitive delays.  At 20 months, Braxton is actually more like a 10-11 month old baby developmentally.  It is possible that he “catches up” and maybe even has “normal” cognitive ability, but no one can tell me that with any certainty.  Who knows if his diagnosis may also bring physical deformities later in life – there is so much we don’t know right now, and most days I silence those thoughts and thank God for the blessings of today.  I’m so thankful that Braxton is doing as well as he is, but I know he’s still not where he should be.  I’m so scared of Braxton going to

Teach your children to be respectful

Teach your children to be respectful

school and being bullied.  I know it’s going to happen and there is nothing I can do about it.  And THAT is what terrifies me – the nothing I can do about it part.  I’m deeply saddened that as a parent I cannot help shield my son from the cruelty and hate in this world, that all I can do is help prepare him to face it, and hope he is able to actually defend himself when the time comes.  Braxton will be one who the term “Mentally Retarded” describes.  Actually, the official term is now “Intellectual Disability” and I know this is something we will have to deal with.  Braxton is more than likely always going to be behind his peers.  I don’t even know if Braxton will ever even speak correctly.  He makes many sounds, but none are real words with meanings.  He may need an assistive communication device to talk to us.  Hopefully he will learn sign language to communicate with us too.  He’s always going to be different.  We will do our best at home to teach him to embrace his differences and not be embarrassed by them.  We will teach his sister how to stand up for him.  She already loves him despite any disability, and I’m so thankful she will also grow up and be more tolerant of others because she has grown up in such an environment.  But hate, cruelty, bullying, ignorance, and a slew of other things no child should EVER have to deal with we will HAVE to prepare for, because it will inevitably happen.

I will admit (although I’m ashamed to) that yes, I once threw around the word “retard” like it was nothing.  I felt like if I wasn’t using it toward an individual with an intellectual disability in a mean way that it was no big deal.  I was wrong. Very wrong. It’s a HUGE deal. Sadly, it took having my own child with disability to get me to understand this.  And that’s where YOU come in.  I need YOU to help me bring this issue to light. To understand it’s importance in our life and how it directly affects us.  I can’t change the future, I can’t stop the hate my son will face, but I CAN attempt to educate everyone I meet and everyone who reads The r-wordour story about the terrible effects of the “r-word.” The word is usually used in a derogatory manner to mean any number of things including: stupid, pathetic, loser, moron, idiot – none of which is how I would want my son to be described.  This is so much more than a language change; it’s a culture change.   We as a culture have to change the way we think about people with disabilities and words like “retard” and ultimately strike that word from our vocabulary altogether.  You may not realize that your choice of words is harmful to people, but I’m here to tell you that it is.  The r-word hurts million of people and kids like Braxton.  If you wouldn’t want someone picking on Braxton, you shouldn’t stand for anyone slandering another child similar to Braxton.  When people are called out for using the r-word the standard response is something like “Oh, I didn’t mean YOUR kid” or “I didn’t mean it like THAT” or “well, you know what I meant” No, actually I don’t know what you meant.  From where I stand you meant to say that you did something stupid or foolish, or that someone else did something pathetic, or that someone is a loser.  Why not say that? Why not choose another word? Why not strike the insult altogether? The Special Olympics started the “Spread the word to end the word” campaign several years ago to tell people how harmful the r-word is and to get people to think about what their words mean.  Today is the national campaign day to spread the word.  There is still time for you to go to r-word.org and add your name to the list to pledge to STOP the use of the word “retard.” Little by little we can all make a difference for Braxton and all the children like him.

Spread the Word to END the Word

6 Comments

Filed under Family, Kids and Family, Life, Special Needs Child

6 responses to “My Biggest Fear And How YOU Can Help

  1. Excellently written post!

  2. I totally get your fears, but I think there ARE things you can do. You might not stop the bullying, but every time your pour your love into your son you’re helping him have a strong self-assurance to draw on when or if he gets bullied in the future. So way to go, Mama!! God bless!

    • Well thanks!! I just hate that it’s even an issue :/ I will surely do all I can to empower him, just wish he didn’t have to face it at all.

      • I know,I wish we didn’t have to think in these terms. Silasis five and homeschooled but still encounters bullies very once in a while. We always make sure to talk about it afterwards and we talk a lot about people who live on ” the island of prejudice” who just have silly ideas, like that boys with feeding tubes are less intelligent, etc. we kind of make it a game.

  3. Chris

    Hello! We do not know each other but I just now came across your blog. My daughter is 3 1/2 and has global developmental delays (undiagnosed at this time) the most significant being in cognition and language. We are already thinking about kindergarten and the future so we can be as prepared as possible. It is a scary thing to think about but I am trying to take one day at a time. I think it will be important for us as parents to be educators to other parents/children because if you don’t have a child with developmental delays it is hard to really understand the challenges. Please know you are not alone and there are many people out there having these same fears/difficulties.

    • Thank you for taking the time to read and comment. You are very right that we will have to become educators for other parents. Always good to know we aren’t fighting the battle alone. Best wishes to you and your little one too! Good luck with entering school 🙂

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