Author: Melissa

That word is back in the news. Periodically someone famous lets it slip in public, gets skewered (rightfully) by angry families, friends and self advocates, apologizes and then we the rest of the world moves on until the next time.

We…we don’t get to move on because, while the rest of you folks feel better if there was an apology from the most recent famous offender, we still hear it. Almost every day it seems at times. From a high school classmate on Facebook, from a co-worker, from a family member, from other parents, from random people in the aisles at Target, from ER admissions workers, from those stupid “joke” pictures on Pinterest because obviously it’s so funny to make fun of people with intellectual disabilities.

It is literally everywhere we turn, I cannot tell you how many times I’ve been watching television and had it just thrown in my face….hahahaha…cut out my heart. AND, for those apologists who also seem to pop up every time there is another high profile usage of it, we aren’t being oversensitive…there is no such thing as oversensitive when it comes to people making fun of your child or another child like him.

I wrote this note to the high school aged friends of some of my favorite people nearly two years ago because it finally dawned on me that while “adults” who are using this word may be a lost cause (though, I really, really hope not!) the next generation can do so much better…if only they stop and think.

Don’t mind me; I’ve got something I’d like to say to your friends…

I’m Melissa, Christina/Jenica/Kaitlyn/Kaitlin/Kevin/Maranda/Samantha’s friend/cousin/aunt/aunt/aunt/friend/aunt, and I have a son who is almost 7 years old. His name is Caleb and he is probably the cutest kid to ever walk this earth. OK, maybe not, but he’s my ONLY child and I’m required by law to think it just like your parents’ think this of you (even when you’re jerks, btw.) Caleb is a sweet, loving little boy and he happens to have Fragile X Syndrome.

You probably haven’t heard of it before, lots of people haven’t even though Fragile X Syndrome is the most common cause of inherited mental impairment and the most common known genetic cause of autism. (If you ever have a science project to do you should check it out, it’s a great topic, http://www.fragilex.org is a good place to start.)

Anyway, besides being extremely cute, incredibly sweet and having Fragile X Syndrome, Caleb also has intellectual disabilities. Did you know that by casually using the word “retard(ed)” to refer to an action as less than ideal you are making someone with an intellectual disability feel less than human? Often, the word is also used casually to denote behavior that is clumsy, stupid and even hopeless. The word conjures up a painful stereotype of people with intellectual and developmental disabilities. It hurts. Even if you don’t mean it that way.

I’m asking each of you to take a stand and raise awareness of the dehumanizing and hurtful effects of the words “retard” or “retarded” and encourage others to think before they speak. Please take the pledge and join the R-Word campaign at http://www.r-word.org/Default.aspx.

I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.

That is all and thanks 🙂

I want to write a lighthearted, happy post about my little Monkey. An upbeat post about Saturday’s awesome fragile X conference in Connecticut would do in a pinch but…I don’t have either in me. Not today.

Yesterday, I was strong, I was upbeat, I was positive because that’s who I am when Monkey needs me. I was calm as I explained to yet another doctor how to best examine and treat my little guy. I ate celebratory donuts. I built a fort out of sheets and blankets to make sitting still a little easier for my bouncy boy.

Today, the memories of his tears, of our frustrated attempts to find out what hurt, of his uninjured leg banging against the couch to get the sensory input his too sore little body desperately needed…have left me drained and numb.

It’s been a very long time since I’ve said, “I hate fragile X.” but it’s back, rattling around in my head. It’s been a very long time since, “How are you?” resulted in tears, but my eyes burn with them today.

Today, my heart is just a little raw from knowing how helpless I am, and will continue to be, at times as we live this life with fragile X.

Tomorrow, I’ll be better.

I have been, as far back as I can remember, a night owl. Sometimes it’s insomnia, I remember laying in bed for hours as a child unable to fall asleep, and that sucks but I stay up late every night. People look at me sideways when I say I stay up to 12/12:30 every night but that’s normal for me. If I’m up at 2 or 3, then I’m having a problem.

The trouble is that, no matter what we do, no matter what time he goes to bed, Caleb very, very rarely sleeps past 6 AM. These two things do not work well together! And to add to it, when he wakes up he always bypasses Eric’s side of the bed….which, may I point out, is MUCH closer to the door than my side…and comes right to me. Just one of the many perks of being Money.

Lately I’ve been having trouble sleeping. Why? Because I’m a damned carrier that’s why! Night sweats. NIGHT SWEATS people…I’m way too young for this shit. *sigh* Gooooo FXPOI! Anyway…staying up late, multiple night wakings and a 6 AM wake up call…it’s not pretty. Caleb usually finds ways to make everything he does cute…but he has not found a way to make a 6 AM wake up call even just “OK” and it sure as heck isn’t “cute” no matter how much he tells me otherwise.

Monkey: “It’s so cute, Money! So cute!”

Mommy: “No, you know what is cute? You SLEEPING in. That is so CUTE it would blow my mind!”

NO, I don’t ever say that. Sigh. I do think it pretty hard though.

Until this morning I would have sworn up and down ((and sideways too.)) that there is no such thing as a cute wake up call…and I would have been proven wrong, as I so often am, by Caleb.

Curious what a cute wake up call is like? It’s my little Monkey standing at the side of the bed whispering.

Monkey: “What time is it, honey?’

Mommy: “What?”

Monkey: “What time is it, honey?”

Mommy: “I dunno, bud, what time is it?”

Monkey: “It’s six-firty, Money. Six-firty.”

A year ago…we barely had SENTENCES….now we have paragraphs. Appropriate context paragraphs even.

Now if only I could convince him that he should stay in bed until seven-firty once in a while…

It’s a strange moment when you realize that the hopes and dreams you have for your child, the ideals you wish to impart to them are more than you can ever be yourself.

Caleb is, quite simply, the best person I’ve ever known.

• He loves unconditionally.
• He is empathetic. He will never roll his eyes because another child is crying loudly and disturbing his peace. It hurts him to see people hurt and he wants sincerely to make it better not just make it stop.
• He doesn’t ever judge people. He doesn’t care what you wear ((Just no masks please!)) or where you live or what you drive or what you do.
• He doesn’t care what you can or can’t do for him, he will always reach his hand out to you and ask, “How’s it going?”
• He doesn’t keep score, any wrong or harsh word is forgiven.
• He expects the very best from everyone every single time…even if they don’t deserve it.
• No matter how many times someone walks past him without responding to his greeting, he still greets the next person with just as much excitement.

This is why when anyone looks at me with pity in their eyes…I get angry. Seriously, angry. I can’t possibly convey to someone in that moment the truth which is, you shouldn’t pity him…you shouldn’t pity me…save that for yourself because you can’t know pure love until you love a child like mine.