My First SBA Conference 2012

This year I was fortunate enough to attend the Spina Bifida Association's 39th Conference in Indianapolis.People have been abuzz in all the SB groups on facebook, including my group, Living With Spina Bifida. It's been a personal goal of mine to meet some of the delightful people I've had the gift of meeting in the online Mom and SB community. It was exciting to count it down with friends and talk about meeting up in the lobby. There were so many sessions I wanted to attend, so much going on, so many doctors and speakers and vendors. The Cincinnati Children's Hospital Colorectal Center was presenting and had a booth. A million medical supply providers for catheters and orthodics, different wheelchair vendors, the ZipZac chair, armtrykes, standers, service dogs, latex allergy groups, and so on. Jean Driscoll spoke at the celebration luncheon and she is an amazing athlete and speaker.  My homie Erica Hoke Potter won an award for her fundraising efforts for 4 before the 4th.  They shined the spotlight on some really awe-inspiring people who are doing important things.

This trip had me pumped. Super pumped! However, it was a journey fraught with trouble.  It was cancelled flights, bodily fluids, personal injury, and Hell on my back.  I could be heard saying I was never going to leave my house again after this trip.  Kemper is still out of sorts over a week later and missing a piece of his top front tooth.  Thankfully it's a baby tooth, but still, a chipped tooth.  I'm nursing a 2nd degree burn on my hand, and some of our clothes were thrown away.  I had a big stroller, diaper bag, cath bag, carry on, a suitcase, and my car seat.  It was ridiculous. And so hot, dude.  Crazy hot.

I'd go again in a heartbeat though. The bond between the people in our community is strong, for the most part it was like getting together with old friends.  The information and networking at the conference was absolutely worth the trip. Kids Camp was fanastical, the girls running it have a sister with SB. They were great with my son, and with the clingy Mom. (It was the first time I'd been away from him like that, c'mon, that was hard!) The tips and pointers and feeling of someone really knowing what your life is like and understanding how hard and how wonderful the day to day can be is so awesome that it makes me a little emotional. My heart was usually soaring or breaking, I cried a little, and I got some really solid information and feel like I have a plan for Kemper.  That feels freaking amazing.  It's like you're bursting with renewed energy to be home from conference.  You have all this information and data and know what you need to work on, and it's rejuvenating to the spirit to have that burst of steam to do something great for Kemper. It feels good to have a plan and goals and ask panels of experts questions and get answers and suggestions that are working.

If someone asked me if conference was worth the hefty tag of attendance, hotel, and airfare, I'd say without a doubt YES. Also, it's pretty sweet to stay in a swanky hotel and go to receptions and have wine and catered breakfast and lunch for a few days with some really nifty peeps.

Next year will be a little different with mini conferences, but I still plan on going to whatever they have, and participating in the SBANCSC Walk n Rolls this coming year. This is my cause and I have renewed vigor.

The "R" Word

This post is tough. Not everyone agrees with how I feel about the word retarded. I used to be one of those people. Things change.

When I was a kid, it was a thing to slap your hand and forearm against your chest in a flopping manner and talk with a forced speech impediment. That was supposed to be a burn, a joke, calling the person you were talking to retarded. I don't know if kids still do it, but the thought of it now makes me cringe.

I've said this before, I used to use the word retarded in such a way that it was a slur. When you take the word and use it out of context it takes on a negative connotation. Now people will say they would never refer to a child with MR as retarded. This baffles me. Yes, they have changed all the labels, do you know why? Because the word retarded has taken on such a negative connotation. Now it's a put down, a way to call someone stupid, to refer to yourself as forgetful, etc.

The odd thing is how vehemently people will argue to be able to continue using this word in a hurtful way. Arguing syntax, arguing definitions, posting the dictionary entry. The word has it's place in engineering, mechanics, music, etc. Not to describe how silly you feel for forgetting your lunch. Not to call someone stupid. I suppose this is piggy backing on me posting a blog link on my wall to "Herding Cats." It's a blog written by a woman whose daughter has MR and how people use the word retard or retarded in an insensitive way. I linked it to my facebook and all Hell broke loose.

My son doesn't have MR.  He's got Spina Bifida, hydrocephalus, a VP shunt, a neurogenic bladder, hydronephrosis in one kidney, reflux, texture issues with feeding, a hydrocele (hernia), and he lacks the dorsi flexion in his feet he needs to walk properly. He's already been referred to as retarded by ignorant people. He has had multiple surgeries, has OT, PT, has had UTI's, been hospitalized, and goes to the doctor so much that everyone at the front desk knows him. He has to fight so much, just like all special needs kids. These kids fight EVERY. SINGLE. DAY. for things most people take for granted. Why do people want to add to their fight by throwing around a word that can cut so deeply?

That's why I'm so passionate about ending the use of the word retarded as a put down or way to describe how slow you are getting started in the morning. I'm a special needs mother and I want to advocate for the whole community.  

Why would you argue to continue being able to say something that can be so hurtful? This is the part that truly confounds me. Is it selfishness? Is it the perception of being told what to do? I don't understand it. I can't imagine anyone giving an explanation that would justify this in my mind. That's where I leave this post, I drew my line in the sand and it makes me mad as Hell that we even have to have a line. If you disagree with me, that's fine for you but this is not an agree to disagree situation for me. This is a deal breaker. I'll not suffer fools on this issue.