Thursday, July 31, 2008

Kennedy-Brownback Bill defeated in Senate

Here's a summary from Patricia Bauer's website:
The Prenatal and Postnatal Diagnosis Conditions Awareness Act, aimed at providing accurate and comprehensive information to parents who receive a diagnosis of a disability for their child, died today in a massive Senate showdown over federal spending.
Senate Bill 1810 was among a package of about three dozen bills that went down in a partisan vote, as Senate Majority Leader Harry Reid attempted to break a logjam created by Republican Sen. Tom Coburn of Oklahoma. Coburn, who has become known as the Senate’s “Dr. No,” had used a procedural device to block the bills, which included some $10 billion worth of bipartisan legislation.
Reid had hoped to outgun Coburn by combining the three dozen bills into one massive “Advancing America’s Priorities Act”, but the measure failed to rally the required 60 senators needed to bring it to a vote. Coburn had threatened a filibuster if the measure advanced.

However he said he would back most of the measures if the lawmakers did something about high gas prices.

HIGH GAS PRICES???? Are you kidding me? A pregnant woman may not receive accurate prenatal information and support regarding a DS diagnosis because of HIGH GAS PRICES? Does anyone else feel like slitting the tires of their car right now?

Here's the joint response from the National Down Syndrome Society and the National Down Syndrome Congress:
By a vote of 52-40, the Senate voted on Monday, July 28 against proceeding to debate on S. 3297, the Advancing America's Priorities Act, which bundled together the Prenatal and Postnatal Diagnosis Conditions Awareness Act (known as the Kennedy-Brownback bill) and many other bills into one piece of legislation. Unfortunately, we fell eight votes short of the 60 that were required for the Senate to begin consideration of S. 3297.
This does not mean that the bill is dead. We need you to remain vigilant and hopeful.
This session of Congress is not over.
We still have an opportunity to pass S. 3297 this year so it's absolutely critical that yesterday's disappointment not deter us from our goal. Our work will continue when Congress returns from its summer recess in September. Yesterday's vote was not a reflection of lack of support for the Kennedy-Brownback legislation. Indeed, the bill was reported out favorably in a bipartisan vote by the Senate Health Education Labor Pensions (HELP) Committee. Unfortunately, S. 3297 and the Kennedy-Brownback legislation became caught up in broader disagreements between political parties about matters not related to Kennedy-Brownback. Election year politics are having an impact on every issue debated by the Senate.
Our efforts will continue. We all agree about the importance of this legislation and will let you know when your advocacy efforts will be the most timely and effective.

Monday, July 28, 2008

Someone took my car!

Don't be alarmed by the title. Someone drove away in my car because I donated it to the National Down Syndrome Congress! Yay! I had a 12 year old Dodge Neon that was in need of some minor work but we decided not to put any more money into it. Instead we opted to get a new car with better gas mileage for the Tank's work commute. We decided on a Honda Fit but after getting an offer for next to nothing on the Neon as a trade-in, we thought it would be more beneficial for us to donate it and take the tax deduction. At the same time, we'd be helping a worthy cause. Everybody wins! They picked it up last week and though I was sad to see it go since it was the first new car I ever purchased, I'm so happy to have been able to help the NDSC. If you're interested in their auto donation program or other ways to help, click here.

Friday, July 25, 2008

This is what summer is about...

Going to my grandfather's farm in Virginia on a crazy hot summer day, bushwhacking through his fields (no animals these days to keep the grass down) to reach the sweet spot of summer: the perfect cool-trickling shady stream surrounded by the fragrance of wild peppermint and honeysuckle with natural snacks of blackberries and watercress at the water's edge. THAT is where I loved to spend a childhood afternoon so I couldn't wait to take Caden and the Tank there. My parents and my two nieces also joined us in skipping stones, building dams, finding crawfish, minnows and dragonflies, and floating boats. Those are the pieces of heaven of which memories are made.

Can you believe nobody had a tick after going through this? In fact, no one suffered even a mosquito bite the whole time.

Discovering what creatures hide under the rocks

My rockstar gone aquatic

It's a Caden love sandwich!

Monday, July 21, 2008

Love from Boston

Here is a wonderful Boston Globe article describing one of those rare full-circle moments in life. The editor of Gifts and a fellow contributing author were presenting a seminar at the National Down Syndrome Conference in Boston when a mother stood up with her infant daughter and.....well, you can read the rest for yourself.

Revelation at the pool

I signed Caden up for swimming lessons. Watertots is more like playtime in the pool but Caden really enjoys it. As long as I let him hold a rubber duckie he really doesn't care what I do to him in the water: float him on his back, pull him around like Superman with arms outstretched, he'll even blow bubbles. I'm hesitant to let him go under because of his ear tubes but otherwise he's doing pretty much the same things as all the other kids. I'm counting my lucky stars that he hasn't had to number two during lessons yet. Those swim diapers were not made for a kid taking Miralax!

There are other classes going on at the same time, all ages and abilities. As Caden and I walked around the pool at the end of our first lesson, I noticed some of the other mothers were reading books in the grass, talking on the phone in the shaded picnic area, one was even painting her nails. I thought "That will never be me. I'll always have to be with Caden in the water, or at least keeping a very close eye on him from the side of the pool." Sigh. Pity party, table of one.

I helped Caden up the stairs and then around the upper pool on our way to the car. He got very excited seeing the dives and flips, dropping my hand to sign "jump" over and over. Then I saw him. In the middle of the line and nearly indistinguishable from those around him. I stared until I could confirm that he had Down syndrome. Here he was, probably a middle schooler, in line with his peers, waiting his turn like it was no big deal. As he climbed onto the diving board, I scanned every direction around the pool. Where was his mother? Older sibling to watch him? I began to panic when the lifeguard seemed unconcerned. Then he ran down the board, jumped as high as he could, and spiraled into the water. I held my breath with him until I saw him surface and casually swim to the side, then climb out. He was fine and ready to do it again. I hugged Caden and said, "Buddy, that's gonna be you one day diving into the big pool and swimming all by yourself!" And one day I will be like the missing mother, maybe sitting in the grass doing a crossword puzzle and knowing my son is fine without me.

Tuesday, July 15, 2008

Escape from naptime

Sometimes when I think Caden has fallen asleep for his afternoon nap, I will spot little hands sticking out from under his door, desperately seeking contact with anything that may help in his escape. Sneaky bugger!

Friday, July 11, 2008

Please vote!

Can you imagine being the opening band for Coldplay? Well, my brother-in-law Laurence has that chance. His band Shag has been selected as a finalist in a contest to be the opening band at Coldplay's upcoming concert in D.C.! But he got cheated in the process. When the finalists were announced and voting started, Shag's video was missing so people couldn't vote for them. By the time Coldplay got it fixed, some of the competitors already had hundreds of votes. Please vote and help bring them justice! The public vote will select the top 3 bands and the members of Coldplay will select the winner from there. You can only vote one time per email address so please pass this info along! Please go to and click on Vote Now. Look for Shag's video (singing Overated). The band names aren't listed under the videos for some reason but they are the 12th band shown, or 4th from the bottom. You can just make out the Shag bullseye banner on the left of the stage behind Laurence singing. Voting ends Thursday, July 17 so please vote now. THANK YOU and CHEERS!

Wednesday, July 9, 2008

NO! It's wrong!

My friend's 8 year old son took a peek into the crib. He had been wanting to meet Caden but unfortunately they arrived when my 4 month old needed a nap. He watched my baby sleeping for a bit and then looked up at my friend, "He doesn't look funny, Mommy". She showed no signs of embarrassment. "No, he's a cute baby," she whispered back. I knew from this exchange that she had prepped her son for what to expect when he saw my baby. She had tried to explain Down syndrome to him, which I appreciated, but part of her explanation must have included being funny-looking. I knew they meant no harm so I said nothing as we crept out of the room and retreated to the living room sofa.

A little while later a reference was made to my friend's nephew who has autism. She must have also tried to prepare her son for DS by comparing it to autism, a condition with which he was familiar. My friend seemed proud that her son understood this connection and asked him "And what do we call people like Caden and your cousin?" I anticipated the answer: handicapped, disabled, special, etc. But I wasn't prepared for his eager reply of "Retarded!" I held my breath as I waited for my friend to correct him. She doesn't even allow the word "stupid" to be used in her house. Instead she said "That's right!" I was new at this and wanted to let them know how hurtful that word was but couldn't find the courage. Instead I stood there, gape-mouthed, with my silence surely being read as agreement. I wanted to scream "NO! That's NOT right! It's wrong!" but held it inside.

I hate that word, the r-word. I don't mind the clinical diagnosis of mental retardation when used in proper context. But because the r-word is always used as a derogatory term in even the most casual of conversations, it will never be acceptable to me. It is a slur. I know my friends meant nothing by it and I know had I taken the opportunity to educate them, they would never use the word again. They have good hearts and would be hurt to know they offended someone. But because most of the people the word references can't or don't speak up for themselves, the word lingers in our vocabulary. Even mothers like myself find it hard to speak up at times.

Not any more. I am at a place in my journey with Caden where there is too much at stake if I don't find my voice for him. Before having my son, I used the word. I have even used variations of it with my sisters almost as terms of endearment. I had no idea whose feelings I may have hurt and I am embarrassed. "But I don't mean anything by it" is no excuse. The word does mean something to someone else, to a lot of people around us. It means a great deal and wounds even greater. I didn't want to confront my friend at the time, but I see now that it's at the expense of one day hurting my son deeply. Today I can say without a waver in my voice "NO!! NO!! NO!! It's WRONG!"

Monday, July 7, 2008

So you need a good book to read?

Just bought this book for the Tank's upcoming birthday as he enjoys history and politics: America According to Connor Gifford. Of course I'll be reading it first before I wrap it up - haha! Check out the website, read some excerpts and learn about the amazing author, Connor Gifford. He is a 26 year old living on Nantucket and has loved studying our country's history since he was in the 8th grade. A quote from Connor: "Through history we know that every character is different. As for my having Down Syndrome, it means that I have a gift. I thank God for having the opportunity to share my thoughts about our past, and my hopes for the future.”

Wednesday, July 2, 2008

The latest bureaucratic conundrum

Caden was recently denied services by our Department of MH/MR (Mental Health/Mental Retardation). They said he isn't eligible. As in, he did so well on their testing that he does not qualify as having mental retardation. This does not impact the therapies he receives through the school district or his eligibility for Medicaid which are the most helpful tools to us. But there are some funds we will miss out on. For instance I was planning on using his FDSS (Family Driven Funds) to have Caden start hippotherapy, aka therapeutic horseback riding. This is simply not affordable to us without that help. We have worked so hard to get where we are with Caden and he is doing very well. But he's doing well because of all these various therapies and program. Seems odd to take them away when they are clearly having an impact. You know, if it ain't broke..... At least I didn't expect them to change anything until he started kindergarten. We do have the option to submit our own IQ test and challenge their decision at any time. But I hate that we as parents are now put in the position of having to call them back and say "No, he really isn't as smart as you say." The protective mom in me wants to fight to keep his services but the proud mom in me wants to scream to the world that my son has been officially recognized for his brilliance and not just his striking good looks!

It was a tougher decision than I expected but we decided to forgo the MR label. The school will automatically redo the IQ test in 2 years before Caden starts school so we'll just see where he is at that time. I have half a mind to march my little genius into my OB's office to make sure that when the doctor scares the next prenatally diagnosed woman out of her wits with all the things that could be associated with DS, that he is certain to also share a lot of positive possibilities like this too. Never in my furthest stretch of a hope during my pregnancy did I imagine a scenario where Caden wouldn't qualify as having some degree of mental retardation. I assumed from all the info I received from the professionals that MR was a given. The last line of Caden's denial from the MH/MR Department said "Caden blew his test scores out of the water - way to go!" Caden is also blowing his mommy's mind. Heck yeah, way to go!