Tuesday, March 31, 2009

Use Respect Instead

r-word.org

A family member recently used the r-word in the presence of my mother. My mother asked, "You know you shouldn't use that word, right?" and the family member, rather than apologize, said she thought it was ridiculous to have to watch her language like that. This relative has a daughter with diabetes and snidely asked "Oh, so now I should say my daughter has special needs because she has diabetes and people shouldn't talk about it?" Clearly not sympathetic, clearly missing the point, clearly refusing to show compassion and respect. Not to mention that it's completely off target since people don't use the word "diabetes" as a derogatory term.

This confuses me. How hard is it? Someone shares why something you said was offensive. Why not apologize and pledge not to speak like that again? It shouldn't be that difficult to think before you speak unless you simply don't care about anyone else's feelings. That's what I gathered from this family member. She's refusing to stop using the slur and is basically telling my mother that she doesn't care who it hurts. Nice.

Yes this is a free country and yes one can speak however they like because of it. But know that it reflects on the person speaking. I remember feeling pity and sadness for an elderly man that recently used the n-word. That whole social movement seemed to have skipped over this person and his refusal to change cast him as a bigot. In my mind, it is the same revelation when I hear the r-word being used. It speaks volumes about its user.

Today is the Special Olympics' campaign to End the Word. Make a pledge to yourself to stop using it in everyday conversation. The English language is expansive. Please think of other words to use. The group of citizens that this word references have to work so much harder at everything they do, including earning some respect. It really takes so little effort on our part to give it to them. Please spread the word to end the word.

Thursday, March 26, 2009

Cheesy face

Don't ever ask Caden to say "cheese" for a photo because this is the guaranteed result: his trademark Cheesy Face.










Monday, March 23, 2009

Caden celebrates Mommy's birthday

Listen for Caden's exclamation of "Whoa!" when he sees my birthday cake at the beginning. I love his absolute joy at new exciting things. And he loved blowing out the candles. You'll see him sign "more" at the end so we actually did this ritual a few times to make him happy. And here I was secretly hoping this birthday would hurry up and go away but if it makes my boy happy, I'll endure.
video

Friday, March 20, 2009

The Weight of the World Down Syndrome Day

March 21 is World Down Syndrome Day. The date is selected for its representation of the three copies (third month) of the 21st chromosome (the 21st day). This year it is even more significant as it marks the 50th anniversary of the discovery of the cause of Down syndrome, that extra copy of Chromosome 21. It is named after the doctor, John Langdon Down, that initially described the grouping of symptoms as a syndrome in 1866. But it was not until 1959 that Jerome Lejeune found the cause.

One of the reasons for having this annual awareness day is "to acknowledge our community of people with Down syndrome who have made such wonderful progress over the past decades," as quoted off the World Down Syndrome Day website. But this year it doesn't feel like progress.

During his appearance on Jay Leno's Tonight show, President Obama compared his pathetic attempt at bowling to the Special Olympics. In case you missed it, here's the actual clip:

It is unbelievably heart-breakingly disappointing to have such prejudice escape the mouth of our national leader. He followed his appearance with a quick press release that he meant no harm to Special Olympics. Riiiiiight. The ol "But I didn't mean anything by it" excuse for disrespect. It's precisely because it meant nothing to someone that makes a comment like that so disrespectful. After all his campaign promises to cater to the disabled by fully funding the IDEA and to pass the Community Choice Act, then this? He ran against a disabled veteran whose running mate has a disabled child. I guarantee that he had been briefed ad nauseum on how to speak about people with disabilities. And STILL this? Sigh.......we've come so far but it's clear we have so far yet to go. I can never get discouraged though. I have my son's beautiful smile to keep me moving forward. And I can only hope that part of Obama's effort to dig out of this hole will be an increased spotlight on the Special Olympics, people with disabilities and the impact of words.

And there are a few rays of light out there in the public eye. Politics aside, Sarah Palin is still raising awareness about Down syndrome. THIS is the way one should speak about Special Olympics:

You gotta love Trig in his new glasses and his sister who can't take her eyes off of him. And did you see his adorable smile? It's that smile and it's Caden's smile that reminds us we can do better.

Monday, March 16, 2009

The Age-Old Age Presumption

The crispness of the question hung in the air like a slap of cold water.

I was finally at the doctor's office for a regular check-up. Since having Caden, I had had exactly 3 doctor visits: my 6 week post-natal OB exam followed quickly by another visit for mastitis and more recently a trip for strep throat. I figured it was probably a good idea to get back into more regular visits considering I was having the big Four-Oh birthday in a matter of days and my body would certainly start to disintegrate post-haste.

I was first examined by a medical resident. He posed an hour's worth of thorough questions with an eloquent lilting accent, took copious notes and eventually was joined by the attending physician, a tall woman likely a decade older than myself. Both scolded me for not going to the dentist, the optometrist, the OB-GYN, etc. on an annual basis. The doctor also asked if, based on my age, I wanted a referral to a fertility clinic. I wasn't necessarily trying to get pregnant but we weren't exactly NOT trying either. I had been taking my folic acid just in case but with Caden turning four this summer, I was also growing comfortable with the idea of our family of three being complete as is.

Before I could answer, the doctor went into the ominous medical spiel about having a child at my age: increased risk of birth defects, pregnancy complications, health dangers to myself, and "things like Down syndrome." Who did she think she was talking to?

"Oh, yeah, I'm very aware of all that. My son has Down syndrome." I informed her. And then she proffered this presumptuousness:

"But you had him when you were younger, right?"

I bristled. THAT question again. The general thinking used to be that babies with Down syndrome were born to older mothers (aged 35 and up in medical terms). Though odds do increase with age, most babies with Trisomy 21 are actually born to younger mothers because that group is the one having most of the babies. Then when one considers that older pregnant women routinely undergo prenatal tests that could detect such "birth defects" and statistics show that 90% of women with a prenatal diagnosis will then choose to abort, the general thinking has shifted. Now when a baby is born with an extra chromosome it is common to assume that the mother was younger, didn't get the more accurate prenatal testing that an older women would and was thus denied the opportunity to abort. This doctor seemed to take my child's mere existence as proof of that.

It can be draining to explain over and over that I chose to have my baby, a baby with a chromosomal abnormality. It takes some fortitude and patience but I tend to welcome these questions in the interest of education and awareness from most people. I'm sure I would have the same wonderings if Caden weren't my son. I truly appreciate when someone is trying to imagine being in my shoes and I forgive initial misconceptions.

However, I was less lenient with the physician. She had my file in her hands and could have found the information herself. She could have used a more neutral phrasing like "How old were you when you had your son?" But she didn't. I expected differently from a trained medical professional and felt disappointed, and hurt.

"No," I corrected her, "I was 36 when I delivered Caden." Oh, now she flipped through my records. I knew she was searching to see if the hospital had missed the Trisomy 21 diagnosis. I decided to spare her the trouble and added "I had a prenatal diagnosis."

"Oh, okay," she stumbled while avoiding eye contact, "So you know what can happen."

The hackles were out. I didn't like the insinuation hanging around "what can happen". How could I possibly explain to this multiple-degreed yet not fully educated woman what I knew about "what can happen"? Would she comprehend that Caden was the best thing that ever happened to me, my rising sun, the pride of my life and its greatest blessing, my legacy, my love, my child? Could she understand that "what can happen" is the greatest love and deepest happiness I've ever known? And would she believe that knowing what I know now after having Caden, I would make the same decision again? And again?

The fumbling doctor still wasn't looking at me. I glanced at the resident and caught him watching with eager eyes. Maybe the doctor had an inflexible mindset but this young man seemed open to possibilities. He was the future of medical care and he was paying attention.

"Yes, I know," I stressed with a furrowed non-approving brow hoping she'd look up.

"We can give you that referral to the fertility clinic if you still want it then," she emptily offered. I know she expected me to decline as if having Caden should scare me away. Now I'm not about to go out and get pregnant just to prove a point to a doctor that will probably never appreciate the value of a child like mine. But the truth was that it would be beneficial to the Tank and I to find out whether another child is still a possibility. Having some diagnostic tests completed would be a good kick in the tush. Then we could move onward with whatever the findings may be instead of hanging in conception limbo. The doctor in one last attempt at dissuasion added that my insurance company probably wouldn't pay for anything more than the first consultation.

"Okay," I answered, "Might as well have one visit and see what they find."

"That's right," agreed the resident and I couldn't help but feel his genuine support in these first encouraging words of my visit. The doctor excused herself to go fill out the paperwork. The resident over-optimistically claimed that they'd be right back (doctors are never "right back") and followed her out of the room. He turned back towards me as he pulled the door behind himself. He was smiling. I whispered thank you and smiled back.

Friday, March 13, 2009

That's the way the cookie crumbles


My cookie non-monster is starting to see what Mommy sees in cookies - yumminess. In this previous post, I mentioned that Caden has no interest in cookies. He also doesn't like candy, chocolate, ice cream, cake or pie. Maybe the sweet tooth skips a generation because I never met a dessert I didn't like. Caden has made some progress in the cookie department recently. He will eat sugar and oatmeal cookies now, but only if they are without frosting or other decor and very soft. Crunchy cookies are out. Except for Oreo's. Or more specifically the filling in the Oreo's which is my favorite part too. Not that I've demonstrated this technique to him but he likes to pull the two wafers apart, lick the filling and then hand me the gooey semi-dissolved wafer halves. He is so my son.

Wednesday, March 11, 2009

Z-O-O

This weekend the area zoo had a birthday celebration for their mascot. We are members of the zoo so we are also frequent visitors. I usually ask Caden if he wants to go to the zoo by fingerspelling "z-o-o" followed by the sign for "animals". I assume it will be awhile before he can fingerspell but I like to first demonstrate the proper sign anyway. He had a grand time at this birthday celebration with the games, crafts and animal displays they had created for the occasion. Though he was so exhausted he could barely walk, he insisted he didn't want to leave every time we asked if he was ready.

The following day we were out running errands and found ourselves on the road leading to the zoo. At the last stop light before it becomes visible, Caden began to sign something from his car seat. His fine motor skills being what they are, I do admit that sometimes I have trouble deciphering his signs without a context. I asked him to try again. He repeated the same movement and I was still clueless. I hate when I don't get it. I feel like I'm failing him and I could see the frustration in his face as he tried his sign over and over. Finally he resorted to signing "animals" and then the light bulb went off in my head. He had been fingerspelling "zoo". I screamed so excitedly that The Tank nearly pulled off the road shouting "What? What's wrong?"

"Caden spelled zoo!" I was elated and shocked. "You want to go the zoo and see the animals?" I asked.

"Yeah!" he said with the same inflection that one would use to say "Duh!" I half expected him to roll his eyes at me. Unfortunately the zoo was closed and I explained this to my little genius but he didn't seem to mind. We were too busy doing the Caden-spelled-zoo dance.

Monday, March 9, 2009

John C. McGinley rocks again

Man, this guy is an awesome spokesperson and I'm so glad he's on "our team". I'm thankful that he's willing to advocate for his son on such a public level. Remember to Spread the Word to End the R-Word on Tuesday, March 31.

Friday, March 6, 2009

Yay - a blog award!

Michelle from Our Roads Traveled honored me with the Premios Dardos blog award. This award acknowledges the values that every blogger shows in his or her effort to transmit cultural, ethical, literary, and personal values every day. Thanks Michelle!

Here are the rules:
Step 1: respond and rework -- answer the questions on your own blog, replace one question that you dislike with a question of your own invention, add one more question of your own.
Step 2: tag - eight other bloggers to do the same.

1) What are you wearing right now? Fortunately I am wearing clothes though unfortunately nothing worth mentioning as my wardrobe is in a pitiful state of style.
2) What is your biggest fear? Dying while Caden is still young
3) Do you nap a lot? The will is there but not the time
4) Who is the last person you hugged? Caden before he went down for his nap
5) What websites to you visit when you go online? I check for news, read other blogs, and then there's that time-swallowing monster Facebook
6) What was the last item you bought? Bananas, Caden's new favorite food
7) If you could go anywhere in the world, where would you go? With Caden, a quiet gentle beach; with The Tank, New Zealand to relive our honeymoon adventure
8) If you could go to the Oscars, who would you want to sit next to? The best male actors group...wassup, Brad!
9) Has a celebrity's hair cut ever influenced your own hairstyle? My head is in my mother's hands
10) What is your most frightening moment? Getting Caden's prenatal diagnoses
11) What was the last movie you watched? Capote. I rent from the library so I'm really far behind in movies
12) What is the luckiest thing that ever happened to you? After the conception of my beautiful boy, I would say winning thousands of dollars when I was in the final four of the Shenandoah University car party
13) If you had a whole day to yourself with no work, commitments or interruptions what would you do? Go hiking
14) Is there a major goal you have that you haven't yet achieved? Visiting Antarctica. I've been to the 6 other continents already.
15) What is the first job you had? I cleaned a gift store called More Fun every Sunday when I was 14.
16) What is something that those in blog land might not know about you? I've gone streaking down an airport runway. Is that like a federal crime or something?
17) What is something simple that relaxes you and you enjoying doing? Yoga as long as my 42 pound toddler is not trying to tackle me in the middle of the moves
18) What is the last book you read? My Up & Down & All Around Book with Caden. Grown-up type books may have to wait till he enters school full-time.

Now to pass on the awarding of the award, I give shout-outs to:
1. Kristi at The Winchester Mantoni's
2. Jennifer at Five in my Family
3. Loren at Malakai Stow
4. Gayla at Where's My Angels
5. Renee from Life With My Special K's
6. Rebecca at E is for Everything

Yikes, I know it says to do 8 but my rock star is awake now and demands my full attention so 6 will have to do.

Tuesday, March 3, 2009

Putting it plain and simple

My son is not....

a burden.
a mistake.
a wasted life.
a tragedy.
contagious.
disgusting.
retarded.
defective.
unwanted.
a sacrifice.
an angel.
a punishment.
drooling in a corner.
better off dead.
his diagnosis.

I am not....

a saint.
better suited to raise a child with special needs than anyone else.
carrying a cross.
throwing away dreams.
doing more than any other parent would do for their child.
the best mother I know.
cursed.
pitiable.
ashamed.
living with regret.
missing out on life.
better off without my son.
teaching my child more than he teaches me.



My son is...

purest joy.
unconditional love.
making me a better person.
amazing in every way.
his daddy's pride.
enhancing my marriage.
living every moment of every day fully.
the happiest person I know.
as worthy of life as any and every one.
a beautiful boy.
smart and funny.
just as he should be.
an inspiration.
deserving of all I can give him and more.
the best gift I have ever received.
a blessing.




Monday, March 2, 2009

Wait a minute, Mr. Postman

Caden mailed his first package at the post office with much enthusiasm. One of his cousins lives over 5 hours away so we mailed her birthday present to her. He helped me wrap it and then refused to put the package down. He carried it to the car, in the car, and then into the post office.
He loves helping me out and doing things on his own so this was mega-fun in his book. He did a little dance with the present while we waited our turn in line.

He was so proud of himself as he placed the package on the counter. Too bad the postal worker wasn't as excited about it as we were. Spoilsport.

Fortunately the other customers in the lobby with us were full of smiles and high-fives for Caden. He was so disappointed to head back out to the car and kept signing "more". Guess I'll have to find more things for him to mail.