Friday, September 26, 2008
The Kennedy-Brownback bill, also known as the Prenatally and Postnatally Diagnosed Conditions Awareness Act and co-sponsored by John McCain, was passed by the Senate on Tuesday and the House joined them yesterday. Now on to the President and it will be law - woohoo! This is an amazing collaborative effort between advocates on both sides of the abortion issues. Those that are pro-life hope that more babies prenatally diagnosed will be born rather than terminated and those that are pro-choice are creating a more informed and thus empowering choice for women. Having experienced a prenatal diagnosis, I can personally attest to the fact that the doctors delivering the news do NOT provide accurate up-to-date or supportive information. A woman is not making a true choice when the only option explained comprehensively is abortion.
Medical professionals receive little if any training on persons with disabilities in medical school or during their residencies. My OB pointedly said that he knew little about Down syndrome because that is the pediatrician's realm. However you don't see a pediatrician if the baby is never born. Any info pulled together while pregnant tends to be about the increased risk of certain medical conditions associated with DS. I know the doctors have liability issues and need to inform their patients of all these negative possibilities to cover themselves. However they completely neglect to inform their patients of all the positive probabilities or of all the support systems and resources available. They leave a woman scared out of her mind, pregnant with a condition rather than a loved and wanted child. It is no wonder that termination rates are over 90% after receiving a prenatal diagnosis.
My genetic counselor offered to schedule an abortion for me. She even recommended that we go ahead and make the appointment with the knowledge that I could cancel it later should I "change my mind". She made that option easy. She did not offer to schedule an appointment with a social worker, a special education teacher, an Early Intervention therapist, or even a parent of a child with Down. I can reflect now that I had NO accurate representation of what life would truly be like with my son. That was a complete disservice to me as a patient and as a woman trying to gather as much information as possible to make the right decision for my family.
My doctor had diagnosed hydrocephalus, cardiac calcification, an enlarged abdomen, a misshaped bladder with possible kidney reflux, among other things throughout the pregnancy. Each ultrasound seemed to find something new. Then 3 weeks before the due date, the blood flow and pressure to the baby through the umbilical cord was decreasing. He appeared underweight and there was also suspected meconium aspiration. Labor was induced and with each contraction his heart rate dropped. A bed was prepared for Caden in the NICU (Newborn Intensive Care Unit) whose staff was present in the delivery room, ready to whisk my baby away. Instead Caden came out pink and screaming. He got a 9 on his Apgars, was a pound heavier than they predicted and had none of the expected problems. He did have the extra chromosome and he did develop jaundice which kept us in the hospital for five days but he didn't spend one second in the NICU. I very much respect my OB and know he was doing his absolute best for us. Still, if he could be so wrong about Caden's prognosis in the short-term, how could he be expected to provide a long-term prognosis when I first received the diagnosis? He referenced "quality of life" several times with the insinuation that my son's might be compromised. Yet I could feel this little guy kicking, turning and hiccuping in my belly and nothing felt out of the ordinary. Thank goodness I listened to my pregnant gut and not my well-intentioned though ill-advising doctor. I shudder to think how close I came to losing the best thing that ever happened to me.
This bill is a step to remedy this whole process. It provides for families to receive scientifically sound information about the nature of the condition involved, as well as to help them make connections with support services, websites, hotlines and parent networks. The bill also provides for the development of a national clearinghouse of information for parents of children with disabilities, expansion of peer-support programs, the development of a national registry of families wishing to adopt children with disabilities, and education programs for health care providers who give parents the results of prenatal tests.
The political parties might be jousting over the financial bail-out but I am thrilled to see them pull together to decidedly give women the power of a choice that is informed. This is politics working for the people. This gives me hope.
Thursday, September 25, 2008
Monday, September 22, 2008
What a way to return to the movies! I have not seen a movie outside my home since Caden was born. Well, I did try to take him to a couple of those free Family Day shows that various cineplexes offered over the summer but we never lasted more than 20 minutes and I don't count the cartoons they showed as "going to the movies" anyway.
Praying with Lior is a must-see. The documentary follows a 13-year-old boy with Down syndrome through his bar mitzvah. Its themes however cross all religions and will really make you ponder the meaning of faith, prayer and ritual. It will make you think about community, tolerance, inclusion and family. It's so beautiful and moving I'm welling up again just writing about it. I was emotionally exhausted after seeing it and am still thinking about its storyline today. I love when a film has the power to do that to a viewer.
At various points I was sobbing with joy, sadness, pride, despair, even simultaneously with laughter. Yes, I was sobbing. It was embarrassing the amount of saltwater rolling off my face. Fortunately snacks had been provided beforehand because all I had to catch my tears with was a cocktail napkin I'd shoved into my empty Dixie cup. Unfortunately it was smeared with the frosting off a chocolate cookie which blended rather well with my mascara to create an extreme work of art on my face. At least I was not boohooing alone. The Tank was choked up. I heard sniffles and noses being blown everywhere. I saw hands wiping cheeks from the silhouettes seated in the rows before us. The lady directly in front of us even crumpled onto a neighboring shoulder (hopefully it was someone she knew). No one was unaffected.
We had the added bonus of a Q and A session with the filmmaker directly afterwards which was equally amazing. I loved the questions that emerged and the dialogue the film was creating. Quite an impressive night.
There's a trailer on the website as well as a schedule of screenings. The DVD isn't out yet so I strongly suggest attending one of these screenings if it's in your neck of the woods. Don't forget your Kleenex.
Friday, September 19, 2008
Here's the deal with Caden's schooling for this year: he attends a special education preschool two mornings a week where he also receives his speech, physical and occupational therapies. There are 7 children, one teacher, one aide, and the 3 therapists in one room so lots of supervision.
He also attends an inclusive preschool two mornings a week where he is the only child with an IEP (Individual Education Plan used for children in special ed programs). Five hours a month, he is joined there by a support teacher but the rest of the time, he's gotta hold his own. There are 12 kids there with one teacher and one aide in 2 rooms so a lot less adult supervision. Also, no one there knows sign language which is Caden's primary means of communication.
Wednesday, September 17, 2008
We waited 27 months for Caden to start walking and it finally happened one year ago this month. So in honor of that momentous milestone, here's the celebration video I made last year. He hasn't slowed down since. I used to be able to set him down in a room with a reasonable expectation that he would be in the same spot 5 minutes later. Now I'm lucky if he's still for 5 seconds!
Monday, September 15, 2008
"Hi guys!" With that greeting, a fit teenage boy suddenly jumped into the water beside us.
The Tank and I had taken Caden to a creek that runs through a local park along with the Tank's father and brother. Caden likes to sit in the shallow water in the shade and throw stones into the creek. Sometimes he breaks out his engineering skills and builds a dam but today we were just doing the stone-throwing thing. He finds it particularly hilarious when a big round rock pitched just so makes a deep kerplunk sound as the water swallows it.
When this young teenager jumped in to join us, I was really caught off-guard. I hadn't heard him approaching and he seemed to come out of nowhere to play with us. But more than that, I was surprised to recognize him. This was the young man with Down syndrome I had spotted at the pool a couple months back (see post here). I distinctly remember being impressed with him that day, swimming and diving alone, tall and fit for his age. Now here he was talking about the new Incredible Hulk movie to the Tank as if they were long-time pals. I looked around to see who might have brought him to the park and there was his mother approaching us. My heart rate started rising with anticipation. I feel so indebted to the parents who have gone before us for they are the ones who demanded proper medical care, education, inclusion and respect for children with Down syndrome and this has made our journey with Caden that much easier. I always want to reach out, say thank you, borrow some advice and yet not come across as some random crazy lady when I meet other parents.
She unfolded a camping chair close to us and said "Whenever I bring my son here, I have to allow at least 2 hours. He loves to play in the water." I jumped at the opening. "Me too! That's my son there." I pointed, hoping she would notice Caden also had an extra chromosome. Of course she did. We shook hands and half an hour later I'd learned that her son was 19 years old and was the first child with special needs to receive an inclusive education in my school district. Ever. She said she had to fight every step of the way but she had made it happen. She was obviously a strong advocate and very committed to presenting her son with numerous and varied opportunities. He was the first child to take gymnastics at the same location where I have Caden enrolled, coincidentally. They tried therapeutic horseback riding, aquatherapy, even music therapy which Caden also receives. Her son has a gym membership with a personal trainer and will be a junior in high school. We discussed medical care, community acceptance, and even shared how we dealt with the initial diagnosis. I carefully observed her son, how he interacted, how he spoke, how "normal" he seemed talking to my single brother-in-law about girls.
I began to feel lost in time. Would I be this woman in 16 years and did she see in me her 16 year journey to this moment? I felt a karmic torch being passed and was overwhelmed with emotion. My heart soared and because I didn't want to cry in front of her (again that random crazy lady paranoia), I told the Tank it was time to go. I thanked this amazing woman for her time, for sharing, for the inspiration, and most importantly for going before us. She looked a little surprised and gave me a what-did-I-do look. She had just been doing what was best for her son, never anticipating it might impact other lives. I squashed the urge to hug her and waved goodbye. "Bye guys!" her son called after us as cheerfully as he had first greeted us.
I couldn't help but look at Caden and think "Wow, buddy, we have some big shoes to fill." But those big shoes blazed the trail for us and I will silently thank them every step of the way while hoping we can do a little trail maintenance ourselves for those who will follow.
Wednesday, September 10, 2008
Friday, September 5, 2008
Whenever the Tank sings be it a Wiggles tune or U2, Caden gets very agitated. He whines and acts like it's hurting him. Seriously. This morning the two of them were playing a Raffi CD but when the Tank started in on the chorus, Caden not only told him to stop but he also signed the word "stop" just to make sure he came across clearly. The Tank looked crushed, asking "What's so bad about my singing?". It's really starting to give him a complex because though I cannot sing in tune whatsoever, Caden has no problem with my crooning. Now we have a new form of discipline out of it. Whenever Caden balks at something we can threaten "You better finish your peas or Daddy's gonna start singing!"
Thursday, September 4, 2008
And this part of Sarah Palin's speech had me in tears:
And in April, my husband Todd and I welcomed our littlest one into the world, a perfectly beautiful baby boy named Trig. From the inside, no family ever seems typical.
That's how it is with us.
Our family has the same ups and downs as any other ... the same challenges and the same joys.
Sometimes even the greatest joys bring challenge.
And children with special needs inspire a special love.
To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters.
I pledge to you that if we are elected, you will have a friend and advocate in the White House.
I believe her. She has already raised awareness about Down syndrome. Trig is a rockstar in his own right. The cameras ate him up. I hope that parents given a prenatal diagnosis of Trisomy 21 will look at Palin and see that having a special needs child does NOT destroy your life or your family. Her career is blossoming, she is still married to her high school sweetheart and it is obvious that Trig is very loved by his family. He is not suffering, he is not afflicted and he may just learn to walk in the White House. How cool is that?!