Friday, February 26, 2010

The Hot Seat

Lucas had his first dentist appointment today. Tom prepped him for it all week and Lucas was actually excited about it this morning...he was showing off his teeth, his brushing skills, and opening his mouth when we told him "say ahhhh..." Little did he know what lay ahead.

According to Tom, Lucas entered the pediatric dentists' office with a lot of bounce in his step. Everything was cool until they asked him to lay back in the chair -- the picture below is the only one Tom managed to snap before he was asked to help hold Lucas down...poor beanie!

The good news is he doesn't have any cavities and his teeth look good. Kids with Down syndrome don't tend to have cavities, but are more prone to gum disease so we need to be diligent about cleanings. He will likely need to have some teeth pulled when his permanent teeth come in because he doesn't have much space up top -- I had four teeth pulled when I was a teenager so I can relate -- no fun, but it all worked out.

Anyway, seems Lucas got carried away with his clean, sparkly teeth and decided to use them on one of his schoolmates -- he left teeth mark on the poor kid's ear...the horror! Tom made Lucas apologize to Carter. When I got home and asked him what happened in school with Carter, he grabbed his ear and said "ear" and when I asked him if he bit Carter and then apologized, he answered "yes" to both. Tom was very stern with him and he's never demonstrated this type of behavior before so I certainly hope this is an isolated incident.

Thursday, February 25, 2010

Enchanted Forest

Recent trip to the "Enchanted Forest" park not far from our neighborhood yielded pony rides (not as big and fancy a place as Lucas' usual hangout, but WAY closer), a playground, and some communing with nature. Here we are with this big ole banyon tree, minutes before we got kicked out because of Roscoe (apparently most Miami-Dade parks don't allow dogs).

Lucas enjoyed his first experience at Steak & Shake...where he instantly became a fan of the strawberry smoothy.

Monday, February 15, 2010

The Bigotry Behind the Word "Retard"

Tim Shriver (Chairman of Special Olympics) wrote an op-ed in today's Washington Post The bigotry behind the word "retard" -- countering this piece The case against banning the word "retard". Needless to say, the controversy over the use of the word is heated -- those who view the disability community's push for an end to the use of the word as limitations on our "freedom of speech" or even "censorship" vs. our community's strident efforts to strike the word's use because it's hurtful, offensive, and is building a dismissive attitude against those with intellectual disabilities.

On a personal note, I feel the term "mentally retarded" or any form of it, belongs to US as so eloquently pointed out by Diane Grover of the [Toronto] Canada Free Press in her essay It's personal; Grover is the mother of a daughter with Down syndrome. As painful as it sometimes is, it is something WE live with because although it does not define Lucas, it is a part of his genetic makeup. In the same way only black people are entitled (right or wrong) to use the belongs to THEM and out of respect, those of us with no experience for the prejudice and pain it causes have no right to use it.

Here are a few excerpts from Shriver's piece:
  • Seventy to 90 percent of people with intellectual disabilities in the United States are estimated to be unemployed.
  • Special Olympics studies reveal that more than 60 percent of Americans don't believe that children with intellectual disabilities should be educated in their child's school.
  • Investigations have revealed people with intellectual disabilities as the victims of abuse, indifference and negligent death.
But for our part, we are trying to awaken the world to the need for a new civil rights movement -- of the heart. We seek to educate people that a crushing prejudice against people with intellectual disabilities is rampant -- a prejudice that assumes that people with significant learning challenges are stupid or hapless or somehow just not worth much. They're, um, "retarded." And that attitude is not funny or nuanced or satirical. It's horrific.

In the end, all I want is for Lucas to have the same opportunities we are all entitled to as citizens of a free world. And, for that, I will fight the stigma, the hatred, the stereotypes that see him and others like him as a label, and I will speak up against the use of that ugly, ugly word.

Sunday, February 7, 2010

More Pony, Please

Tom decided I had to see for myself Lucas' new obsession with horse riding. So, on this beautiful, sunny, cool South Florida winter day, we headed up to north Ft. Lauderdale to Tradewinds Park. Lucas enjoyed the playground before making a beeline for the ponies. Today, he was eager to get the helmet on as he knew it was bringing him one step closer to riding. He rode sweet Charlie for three trips around the stable. I was having technical difficulties with last weekend's video of Lucas' ride so if you didn't catch it, scroll down. We then headed to the mammoth Bass Pro Shop to check out the huge fish. We're now getting ready for the Super Bowl which is paralyzing Miami with tourists everywhere.

Saturday, February 6, 2010


Tom really has been enjoying some bonding time with Lucas lately. The silver lining in Tom's near four-month unemployment is all the time he's been able to spend with Lucas. They've been going out for day-trips the last couple of weeks. Today, they went to Morikami Museum and Garden featuring lots of bonsais, koi fish, flowers, and sculptures -- Lucas had a great time. They finished the day off with a pony ride -- Lucas' newest favorite thing to do.

Remembering Mom

Yesterday, February 5, was the fourth anniversary of my Mom's passing. In some ways it feels like yesterday and in others, like a lifetime. In the last few years of her life, she wasn't able to get around much, but she still enjoyed a good pizza. So to honor her, we had pizza for dinner.

Afterwards, we met my Dad at our favorite ice cream place growing up, Carvel in Hialeah on 49th street and 4th avenue -- the place has been there for about 50 years. My Dad and Lucas enjoyed their first Carvel soft-serve together. It was the perfect way to remember Mom.

Thursday, February 4, 2010

Rahm Emanuel and the "R-Word"

This morning, the Today Show reported that last fall, Rahm Emanuel (White House Chief of Staff) used the term "f*cking retards" in a rage during an argument among Democrats. As a result, Emanuel is meeting with Tim Shriver, chairman of Special Olympics who I hope kicks his ass (wishful thinking). Do I think what he did is wrong? Absolutely. Do I think he'll do it again? Absolutely.

The sad truth is that our society has made the "r-word" common place in every day language. We -- parents, educators, and all those who care about someone with a cognitive disability -- are standing against the use of this word -- "mental retardation" is being phased out as a medical term, replaced with cognitive disability or intellectual disability. I correct people who use the "r-word" all the time, and honestly, I usually have someone thank me for pointing it out. The word is thrown around so mindlessly that they don't even realize they're using it or that it could possibly be hurtful or offensive. I feel I'm changing the person at a time.

But, I digress...when Andrea Mitchell of the Today Show reported the news, she mentioned that Sarah Palin had called for Emanuel's dismissal (a little overboard, I think), but in talking about Palin, Andrea mentioned her "Down syndrome baby" and that's what really got me going so I wrote the email below to the Today Show. I'll let you know if I ever hear back. At least I said my peace. Changing the news show at a time :)

I am and have been an avid viewer of the Today Show for many years and I caught this story this morning. I wanted to inform your writers about the importance of using "people first language" -- you don't call someone a "Down syndrome baby" but instead a "baby with Down syndrome." It's about putting the person first because the disability shouldn't define the person, ever.

Here's what the Special Olympics has to say about people first language:

While you're at it, please strike the use of "victim" or "suffers from" or "is afflicted with" when referring to people with disabilities -- they're just living their lives, just like you and me.

As the mother of a child with Down syndrome, I find it hurtful and offense, and wish a national program with millions of viewers would get things straight, as you're setting an example for everyone listening.

I'm off my soap box.