Monday, December 31, 2007
Sunday, December 30, 2007
The Year in Review
This has been a big year for Aiden. He had a lot of firsts this year.
We started January off with his first cath lab. Then 6 weeks later, the day after Valentine's Day, Aiden underwent heart surgery. Of course, Murphy's Law had to apply and if it could, it did. Originally, the surgery was only supposed to last 3 hours. But due to complications with Aiden's little heart, surgery lasted 8 hours. He spent 5 days on an ECMO machine with artificial heart, lungs, and kidneys. And another 13 days with a ventilator doing his breathing. After 5.5 weeks, Aiden got to come home.
In May, Aiden got admitted into the hospital again with complications from his heart surgery. This time the tear in the thoracic duct leaked enough fats into his chest cavity to cause his right lung to collapse and a small amount of pneumonia. He underwent a process called pleurodesis to correct the tear. Aiden also was diagnosed with atrial tachycardia and pulmonary hypertension.
In July, Aiden was admitted into school. 8 days before Aiden turned 1 year old, he started school as the youngest admitted.
Aiden also said his first word in July, "DaDa" and was looking right at Chris when he said it.
In August, Aiden celebrated his first birthday. Seeing as how Aiden was born at the OU School of Medicine's Children's Hospital and his heart surgery was also there, Aiden's birthday party was OU related.
In October, Aiden got to celebrate his first Halloween. When Aiden was just 2 months old, I found this costume and bought it, even though it was way too big for Aiden. But he got to wear it this year.
This was also the first time Aiden sat unsupported. We also participated in our first 31 for 21 for Down Syndrome Awareness.
In November, Aiden underwent another cath lab to determine his pulmonary hypertension levels. However, this cath lab was unsucessful and we had to schedule another one for December.
In December, Aiden celebrated the first Christmas, he could actually enjoy. Most babies don't care about holidays when they are only 4 months old.
Also in December, Aiden had his rescheduled cath lab to determine his pulmonary hypertension levels. I have the greatest pleasure in announcing that Aiden is....... Pulmonary Hypertension Free!!
We started January off with his first cath lab. Then 6 weeks later, the day after Valentine's Day, Aiden underwent heart surgery. Of course, Murphy's Law had to apply and if it could, it did. Originally, the surgery was only supposed to last 3 hours. But due to complications with Aiden's little heart, surgery lasted 8 hours. He spent 5 days on an ECMO machine with artificial heart, lungs, and kidneys. And another 13 days with a ventilator doing his breathing. After 5.5 weeks, Aiden got to come home.
In May, Aiden got admitted into the hospital again with complications from his heart surgery. This time the tear in the thoracic duct leaked enough fats into his chest cavity to cause his right lung to collapse and a small amount of pneumonia. He underwent a process called pleurodesis to correct the tear. Aiden also was diagnosed with atrial tachycardia and pulmonary hypertension.
In July, Aiden was admitted into school. 8 days before Aiden turned 1 year old, he started school as the youngest admitted.
Aiden also said his first word in July, "DaDa" and was looking right at Chris when he said it.In August, Aiden celebrated his first birthday. Seeing as how Aiden was born at the OU School of Medicine's Children's Hospital and his heart surgery was also there, Aiden's birthday party was OU related.
In October, Aiden got to celebrate his first Halloween. When Aiden was just 2 months old, I found this costume and bought it, even though it was way too big for Aiden. But he got to wear it this year.
This was also the first time Aiden sat unsupported. We also participated in our first 31 for 21 for Down Syndrome Awareness.In November, Aiden underwent another cath lab to determine his pulmonary hypertension levels. However, this cath lab was unsucessful and we had to schedule another one for December.
In December, Aiden celebrated the first Christmas, he could actually enjoy. Most babies don't care about holidays when they are only 4 months old.
Also in December, Aiden had his rescheduled cath lab to determine his pulmonary hypertension levels. I have the greatest pleasure in announcing that Aiden is....... 
Friday, December 28, 2007
Aiden's Cath Lab Round 2
Remember how I wanted to get Aiden out of the house by 4:45am without waking up? HAHAHAHA!!!!! He was up at 2am. And guess what he wanted? A bottle. That is a huge no no, no food less than 6 hours before the cath lab. And two hours less sleep than I had anticipated.
We got to the hospital at 5:25am and had to do all the pre-op paperwork. By the time we got to pre-surgical, the waiting room was packed and we had to wait in the emergency room, for over an hour. Then we were shown to the private room were they did all the pre-op vitals and weigh-in. A little after 7am, we made the long trek to the other side of the hospital where the cath lab is.
We waiting in the PICU waiting room for a little over two hours before Dr. Secondary Cardiologist (Dr. Kimberling - he gave permission to use his name here) came in to give us the news. Good news, he got the cath wire in on the first try.
He showed us some pictures taken of Aiden's heart. He said that the mitrial valve leakage was minimal and that he didn't see any narrowing of the tricuspid valve. But those results were going to be sent to Dr. Cardio-thoracic Surgeon in OKC.
Dr. Kimberling then showed us this:
This is Aiden's heart. All those numbers are Aiden's O2 saturation numbers and his pulmonary numbers. The really high numbers are the saturations and the really low numbers are his pulmonary numbers......
Aiden has really good saturation numbers. AND......... DRUM ROLL, PLEASE.........
NO PULMONARY HYPERTENSION
We got to go back and see Aiden. He was still pretty groggy from the anesthesia and in a really foul mood. He wanted to be held, he didn't want to be held. He sure as hell didn't want any Pedialyte. I think he bopped himself in the eye with the immobilizer, his left eye was swollen and red. And he had a few episodes of bradycardia, causing the nurses to run in every so often.
When Aiden stabilized, he moved to the second floor, which is the "clean floor". Basically, it is where all the kids who have to go through chemo and don't have any immune systems are. There are no colds or contagious infections. The nurses were really nice, but Chris and I stayed the night with Aiden.
The nightshift nurses were pretty friendly also. But they woke Aiden up at 3am to check his sats. Why would anyone want to wake a sleeping baby up at 3am? Don't they know that pisses the kid off and he doesn't go back to sleep until 5am?
We got home about 1pm today. Aiden is sleeping peacefully in his bed.
Oh, don't think that there isn't bad news........ Someone stole Harley while we were at the hospital.
We got to the hospital at 5:25am and had to do all the pre-op paperwork. By the time we got to pre-surgical, the waiting room was packed and we had to wait in the emergency room, for over an hour. Then we were shown to the private room were they did all the pre-op vitals and weigh-in. A little after 7am, we made the long trek to the other side of the hospital where the cath lab is.
We waiting in the PICU waiting room for a little over two hours before Dr. Secondary Cardiologist (Dr. Kimberling - he gave permission to use his name here) came in to give us the news. Good news, he got the cath wire in on the first try.
He showed us some pictures taken of Aiden's heart. He said that the mitrial valve leakage was minimal and that he didn't see any narrowing of the tricuspid valve. But those results were going to be sent to Dr. Cardio-thoracic Surgeon in OKC.
Dr. Kimberling then showed us this:
This is Aiden's heart. All those numbers are Aiden's O2 saturation numbers and his pulmonary numbers. The really high numbers are the saturations and the really low numbers are his pulmonary numbers......
Aiden has really good saturation numbers. AND......... DRUM ROLL, PLEASE.........
We got to go back and see Aiden. He was still pretty groggy from the anesthesia and in a really foul mood. He wanted to be held, he didn't want to be held. He sure as hell didn't want any Pedialyte. I think he bopped himself in the eye with the immobilizer, his left eye was swollen and red. And he had a few episodes of bradycardia, causing the nurses to run in every so often.
When Aiden stabilized, he moved to the second floor, which is the "clean floor". Basically, it is where all the kids who have to go through chemo and don't have any immune systems are. There are no colds or contagious infections. The nurses were really nice, but Chris and I stayed the night with Aiden.
The nightshift nurses were pretty friendly also. But they woke Aiden up at 3am to check his sats. Why would anyone want to wake a sleeping baby up at 3am? Don't they know that pisses the kid off and he doesn't go back to sleep until 5am?
We got home about 1pm today. Aiden is sleeping peacefully in his bed.
Oh, don't think that there isn't bad news........ Someone stole Harley while we were at the hospital.
Wednesday, December 26, 2007
And Yet Another Go at Cardiac Cath Lab
Previously on Aiden's Heart: Pediatric Cardiac Cath Lab, the November episode ended up being unsuccessful. Aiden got stuck a total of 31 times to try to run the cath wire to his heart. And another lab was scheduled for the week after Christmas.
Well, today I got the call to have Aiden at the hospital at 5:30 in the morning. Folks, that is EARLY!!! Before the sun rises early. This means we have to be up and showered, have Aiden packed (and hopefully still sleeping), to leave the house at by 4:45am.
In order to keep Aiden sleeping, I'm taking him to the hospital in his jammies. I don't want to have to wake him up to dress him. When he wakes up, he wants to eat. Well, he's not allowed to eat after 11:30 tonight.
Hopefully all goes well and the next episode of Aiden's Heart: Pediatric Cardiac Cath Lab is a joyous one.
Well, today I got the call to have Aiden at the hospital at 5:30 in the morning. Folks, that is EARLY!!! Before the sun rises early. This means we have to be up and showered, have Aiden packed (and hopefully still sleeping), to leave the house at by 4:45am.
In order to keep Aiden sleeping, I'm taking him to the hospital in his jammies. I don't want to have to wake him up to dress him. When he wakes up, he wants to eat. Well, he's not allowed to eat after 11:30 tonight.
Hopefully all goes well and the next episode of Aiden's Heart: Pediatric Cardiac Cath Lab is a joyous one.
Tuesday, December 25, 2007
Saturday, December 22, 2007
Friday, December 21, 2007
Why Is It?
Why is it that Aiden can control just how much muscle tone he has?
When I want him to sit unsupported (like for therapy), he becomes a wet noodle. When he wants to stick his whole foot in him mouth, he does.
Or when I want him to cuddle and be still so he can go to sleep, he stiffens up and wiggles around to get down. Or when his nose needs wiped or suctioned out, there is NO containing the child in even a wrestling hold. Or when he wants to pull my hair and develops a death grip on it.
I have been reduced to giving him his medications mixed in Pediasure. He usually doesn't fight the bottle like he does the syringe. However, not this morning. He has managed to learn to throw his bottle - ACROSS the room. Or block my hands which is holding the bottle.
When I want him to sit unsupported (like for therapy), he becomes a wet noodle. When he wants to stick his whole foot in him mouth, he does.
Or when I want him to cuddle and be still so he can go to sleep, he stiffens up and wiggles around to get down. Or when his nose needs wiped or suctioned out, there is NO containing the child in even a wrestling hold. Or when he wants to pull my hair and develops a death grip on it.
I have been reduced to giving him his medications mixed in Pediasure. He usually doesn't fight the bottle like he does the syringe. However, not this morning. He has managed to learn to throw his bottle - ACROSS the room. Or block my hands which is holding the bottle.
Thursday, December 20, 2007
12 Days of Christmas
I had to share this
On the first day of Christmas, the good Lord gave to me: a child with a
disability.
On the second day of Christmas, the good Lord gave to me: a heart full
of love for my child with a disability.
On the third day of Christmas, the good Lord gave to me: an ache in my
heart and a heart full of love for my child with a disability.
On the fourth day of Christmas, the good Lord gave to me: a tear in my
eyes, an ache in my heart, and a heart full of love for my child with a
disability.
On the fifth day of Christmas, the good Lord gave to me: an unsuspected
strength for the tear in my eyes and the ache in my heart and my heart
full of love for my child with a disability.
On the sixth day of Christmas, the good Lord gave to me: a ray of hope,
an unsuspected strength for the tear in my eyes and the ache in my heart
and my heart full of love for my child with a disability.
On the seventh day of Christmas, the good Lord gave to me: a sense of
humor, a ray of hope, an unsuspected strength for the tear in my eyes
and the ache in my heart and my heart full of love for my child with a
disability.
On the eighth day of Christmas, the good Lord gave to me: supportive
friends, a sense of humor, a ray of hope, an unsuspected strength for
the tear in my eyes and the ache in my heart and my heart full of love
for my child with a disability.
On the ninth day of Christmas, the good Lord gave to me: remarkable
doctors, supportive friends, a sense of humor, a ray of hope, an
unsuspected strength for the tear in my eyes and the ache in my heart
and my heart full of love for my child with a disability.
On the tenth day of Christmas, the good Lord gave to me: an appreciation
of small accomplishments, remarkable doctors, supportive friends, a
sense of humor, a ray of hope, an unsuspected strength for the tear in
my eyes and the ache in my heart and my heart full of love for my child
with disability.
On the eleventh day of Christmas, the good Lord gave to me: a sense of
pride, an appreciation of small accomplishments, remarkable doctors,
supportive friends, a sense of humor, a ray of hope, an unsuspected
strength for the tear in my eyes and the ache in my heart and my heart
full of love for my child with a disability.
On the twelfth day of Christmas, the good Lord said to me: Reach out and
SHARE your sense of pride, your appreciation of small accomplishments,
your remarkable doctors, your supportive friends, your sense of humor,
your ray of hope, your unsuspected strength for the tear in your eyes
and the ache in your heart and your heart full of love for you child
with a disability.
Thank you Jennifer for sharing this
disability.
On the second day of Christmas, the good Lord gave to me: a heart full
of love for my child with a disability.
On the third day of Christmas, the good Lord gave to me: an ache in my
heart and a heart full of love for my child with a disability.
On the fourth day of Christmas, the good Lord gave to me: a tear in my
eyes, an ache in my heart, and a heart full of love for my child with a
disability.
On the fifth day of Christmas, the good Lord gave to me: an unsuspected
strength for the tear in my eyes and the ache in my heart and my heart
full of love for my child with a disability.
On the sixth day of Christmas, the good Lord gave to me: a ray of hope,
an unsuspected strength for the tear in my eyes and the ache in my heart
and my heart full of love for my child with a disability.
On the seventh day of Christmas, the good Lord gave to me: a sense of
humor, a ray of hope, an unsuspected strength for the tear in my eyes
and the ache in my heart and my heart full of love for my child with a
disability.
On the eighth day of Christmas, the good Lord gave to me: supportive
friends, a sense of humor, a ray of hope, an unsuspected strength for
the tear in my eyes and the ache in my heart and my heart full of love
for my child with a disability.
On the ninth day of Christmas, the good Lord gave to me: remarkable
doctors, supportive friends, a sense of humor, a ray of hope, an
unsuspected strength for the tear in my eyes and the ache in my heart
and my heart full of love for my child with a disability.
On the tenth day of Christmas, the good Lord gave to me: an appreciation
of small accomplishments, remarkable doctors, supportive friends, a
sense of humor, a ray of hope, an unsuspected strength for the tear in
my eyes and the ache in my heart and my heart full of love for my child
with disability.
On the eleventh day of Christmas, the good Lord gave to me: a sense of
pride, an appreciation of small accomplishments, remarkable doctors,
supportive friends, a sense of humor, a ray of hope, an unsuspected
strength for the tear in my eyes and the ache in my heart and my heart
full of love for my child with a disability.
On the twelfth day of Christmas, the good Lord said to me: Reach out and
SHARE your sense of pride, your appreciation of small accomplishments,
your remarkable doctors, your supportive friends, your sense of humor,
your ray of hope, your unsuspected strength for the tear in your eyes
and the ache in your heart and your heart full of love for you child
with a disability.
Thank you Jennifer for sharing this
My Computer Guy
There are three real computers in this house. I have mine, Chris has his, and Chelsea has hers. Well, Aiden has one also. It is actually a V-Tech learning table. Aiden wanted to play with it this morning.
Would I Change Him?
Recently, I posted a question in a forum for moms of special needs and in a forum of moms who have children with Down syndrome. The question posted was "If you could witness one miracle this Christmas, what would it be?"
The moms at the Down syndrome forum all came up with milestones that we would like to see reached. Not one mom wanted to change the fact that our kids had Down syndrome.
However on the other forum, many moms wished for a cure for their child. Some wanted to go back in time and make changes in the pregnancy. Most, wanted to change the fact that their children were different.
If I could change the fact that Aiden had Down syndrome, would I? Aiden is who he is regardless. It doesn't define him. Having Down syndrome is just 1/47 of who he is.
Yes, it does have its ups and downs. Aiden has the heart issues that goes along with having Down syndrome. But, those issues makes him a stronger person. He has fought to be here. Down syndrome also gave him his beautiful Brushfield spots. A cute, kissable nose, and small hands that hold my face when he wants a kiss.
Having Down syndrome also introduced us to a whole new group of people who we now call friends.
Aiden having Down syndrome has taught people tolerance and acceptance. It has also taught people not to use the word "retard".
90% of pre-natally diagnosed children with Down syndrome are terminated. I had that choice. I could have changed things then. Instead, I chose to accept what God had decided to give me. It isn't always easy, nothing in life is. But it is worth it.
Would I want to change him? NO WAY!! Aiden wouldn't be Aiden without the Down syndrome.
The moms at the Down syndrome forum all came up with milestones that we would like to see reached. Not one mom wanted to change the fact that our kids had Down syndrome.
However on the other forum, many moms wished for a cure for their child. Some wanted to go back in time and make changes in the pregnancy. Most, wanted to change the fact that their children were different.
If I could change the fact that Aiden had Down syndrome, would I? Aiden is who he is regardless. It doesn't define him. Having Down syndrome is just 1/47 of who he is.
Yes, it does have its ups and downs. Aiden has the heart issues that goes along with having Down syndrome. But, those issues makes him a stronger person. He has fought to be here. Down syndrome also gave him his beautiful Brushfield spots. A cute, kissable nose, and small hands that hold my face when he wants a kiss.
Having Down syndrome also introduced us to a whole new group of people who we now call friends.
Aiden having Down syndrome has taught people tolerance and acceptance. It has also taught people not to use the word "retard".
90% of pre-natally diagnosed children with Down syndrome are terminated. I had that choice. I could have changed things then. Instead, I chose to accept what God had decided to give me. It isn't always easy, nothing in life is. But it is worth it.
Would I want to change him? NO WAY!! Aiden wouldn't be Aiden without the Down syndrome.
Wednesday, December 19, 2007
Tuesday, December 18, 2007
Aiden Helping Therapy Students
The other day I got an email from the OK City Down syndrome group regarding the OU Health Science Center needing volunteer families for their physical therapy students. Well, I signed Aiden up.
Aiden will have two pt/ot students following him around from January until April. The students wants to know what it is like having a special needs child and how therapies interact with the kids.
This should be exciting.
Aiden will have two pt/ot students following him around from January until April. The students wants to know what it is like having a special needs child and how therapies interact with the kids.
This should be exciting.
Monday, December 17, 2007
Grandma Niece and Aiden
Grandma Niece didn't like the picture of her from the DSAT Christmas party. So this morning, I took a new picture of her with Aiden.
For Annette
One of the members of our Trisomy 21 Online community has lost a long fight with cancer this weekend. Please take time to visit this site and light a candle for Annette.
Friday, December 14, 2007
Christmas Shopping
Today I went and bought a few more presents for Aiden. He has clothes under the tree, but the toys I am holding off on as he is good about unwrapping the gifts early.
I got him this, and this, and this.
Thursday, December 13, 2007
Should I Be Sorry?
I leave it to my Mommy’s writing to talk to all unkind.
I may be small and noisy and in a special chair
But I see you all pointing, laughing and all of those who stare.
I wonder sometimes why it is that everyone I see
Feels like they have the right to make a joke of me.
I hurt no one and make no comments that come across as mean
But I always get the feeling people wish I wasn’t seen.
Should I be sorry that I can’t walk or talk or even eat
My mommy says to never apologize to anyone I meet.
Should I be sorry that my trach tube makes me cough
Or that I get so upset over turning the TV off?
Should I apologize to you because we don’t look the same?
Should I say sorry to your kids for taking longer to play my game?
Should I be sorry that it takes a little longer for me to smile?
When at the photo studio and making you wait a while.
Should I apologize to you for staring while you eat?
Because you see I wonder since I have never tasted meat.
Should I be sorry to you for coughing at the movie?
Even though your child screamed at what I though was funny.
Do you want an apology because my wheelchair is too wide?
That my mommy knocks clothes off the rack and lays them to the side.
Should I say I’m sorry for laughing at your son
While he is being scolded and told he shouldn’t run?
I know I don’t meet your expectations for what a kid should do,
But if think about it from my side, actually neither do you.
Try to remember that I am still just a little boy
I have feelings, thoughts, fears and pain, but mostly I have joy.
So the next time you see me out in public sitting in my chair
And you are getting mad because your child is pulling at your hair.
You are waiting longer because my mommy can’t put it in a cart
She has to push me, carry a purse and groceries through Walmart.
Try to remember what you read about why I do the things you see
And maybe next time you will come up and speak to me.
I promise not to bite or spit or even pull your hair
I would love to know you thought enough of me to care.
And maybe if you think about it speak to mommy too
A lot of times I think she feels like a tiger at the zoo.
Because of me, no matter where, we are always on display
And she always holds her head up high and remembers what to say.
She says,”This is Jack Jack would you like to shake his hand?”
And never gets offended or mad when no one understands.
So I hope that everyone that reads this takes head and tries to hear
What it is I am truly saying and it hits you loud and clear.
If everyone around you looked the same and acted right
Would you have anyone to talk about around you dinner table tonight?
By:Susie Crawford
For my angel Jack Jack
Wednesday, December 12, 2007
Spirit of Christmas Award
Thanks to Michelle at Elliot's Expeditions, I have received this award.
What is the Spirit of Christmas you ask?
According to Santa at Santa's Community Blog "Quite simply it is those that have a generous and giving nature. Those who care about others. Those who have a kind word to say or a broad shoulder to lean on in the times that others need that. Those who display the "Spirit of Christmas".
In honour of the Award, I give this to Pam at Rhett's Journey, Kitty at Nathanael's Neighbourhood, Tammy at Praying for Parker, and Kat at Alexander's Heart
What is the Spirit of Christmas you ask?
According to Santa at Santa's Community Blog "Quite simply it is those that have a generous and giving nature. Those who care about others. Those who have a kind word to say or a broad shoulder to lean on in the times that others need that. Those who display the "Spirit of Christmas".
In honour of the Award, I give this to Pam at Rhett's Journey, Kitty at Nathanael's Neighbourhood, Tammy at Praying for Parker, and Kat at Alexander's Heart
It Has Been a Few Days
Oh my goodness! Monday morning we got hit by an ice storm and lost power. So we talked to Chris's mom and she said that they still had power and we made plans to go over there.
Unfortunately Murphy's Law happens. By the time we got there, they had blown a transformer and lost power, but they still had heat. So we have been staying with them since Monday. This morning, I called the house phone and the answering machine picked up, so I knew our electric was back on.
Aiden had a blast even without power. He was getting held by everyone and got to sleep in the big bed with me. I had to store his formula outside since it was cold enough.
Here is a picture of the trees on the way to Grandma Niece's house
Fortunately, no damage was done to the house.
Unfortunately Murphy's Law happens. By the time we got there, they had blown a transformer and lost power, but they still had heat. So we have been staying with them since Monday. This morning, I called the house phone and the answering machine picked up, so I knew our electric was back on.
Aiden had a blast even without power. He was getting held by everyone and got to sleep in the big bed with me. I had to store his formula outside since it was cold enough.
Here is a picture of the trees on the way to Grandma Niece's house
Fortunately, no damage was done to the house.
Sunday, December 9, 2007
Before I Was a Mom
I never tripped over toys or forgot words to a lullaby.
I didn't worry whether or not my plants were poisonous.
I never thought about immunizations.
Before I was a Mom -
I had never been puked on.
Pooped on.
Chewed on.
Peed on.
I had complete control of my mind and my thoughts.
I slept all night.
Before I was a Mom
I never held down a screaming child so doctors could do tests.
Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night watching a baby sleep.
Before I was a Mom
I never held a sleeping baby just because I didn't want to put him down.
I never felt my heart break into a million pieces when I couldn't stop the hurt.
I never knew that something so small could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.
Before I was a Mom -
I didn't know the feeling of having my heart outside my body.
I didn't know how special it could feel to feed a hungry baby.
I didn't know that bond between a mother and her child.
I didn't know that something so small could make me feel so important and happy.
Before I was a Mom -
I had never gotten up in the middle of the night every 10 minutes to make sure all was okay.
I had never known the warmth, the joy, the love, the heartache,
the wonderment or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much, before I was a Mom.
Power to You, My Sisters
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our children's special needs.
Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.
We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
By Maureen K. Higgins
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our children's special needs.
Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.
We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
Saturday, December 8, 2007
DSAT Christmas Party
Today, our local Down syndrome group had their annual Christmas party. Last year we didn't get to go, so this was our first year.
We had a lot of fun. One of the local restaurants supplied brunch. The Junior League of Tulsa supplied the building. And the Clowns of Tulsa were there blowing up animal balloons and face painting for the kids. There was even a craft table for the kids to make ornaments.
Oh, and the cutest doughnuts!!! They were shaped as Christmas figures! I ate a reindeer. Aiden tried orange juice and I think he liked it. He keep trying to grab my cup.
Anyhoo, the reason you are all here is for the pictures. So here goes:
This is Caleb. He is in Aiden's class at school.
Aiden and Grandma Niece
Aiden and Santa and Mrs. Claus
We had a lot of fun. One of the local restaurants supplied brunch. The Junior League of Tulsa supplied the building. And the Clowns of Tulsa were there blowing up animal balloons and face painting for the kids. There was even a craft table for the kids to make ornaments.
Oh, and the cutest doughnuts!!! They were shaped as Christmas figures! I ate a reindeer. Aiden tried orange juice and I think he liked it. He keep trying to grab my cup.
Anyhoo, the reason you are all here is for the pictures. So here goes:
Friday, December 7, 2007
And Now for the Chosen Card Picture
It took several hours to get this picture. After numerous attempts at getting Aiden to smile for the camera, I gave up until Chris got home.
And this is the winning shot
Our First Christmas Party of the Year
Last night, Aiden's school The Little Lighthouse had their annual Christmas Party. The theme was A Night in Bethlehem.
When we got there, they had a live Nativity scene. Jessica, the speech therapist, had graciously allowed her new baby to play the part of baby Jesus. I wish I had taken a picture, but alas, it was cold and Aiden was in my arms covered up.
Inside, the teachers and other staff members were dressed as they did in the time of Mary and Joseph. Inside the school, Aiden got a little burlap bag with little "coins" to purchase merchandise. They had bread, jewelry making, incense making, a food market, a Bethlehem theatre (which the play was absolutely adorable!).
Miss Kate, Aiden's teacher in the Orange Class, personally knows Santa Claus; or at least her husband does. Miss Kate's husband, Rob, dressed up as Santa for the kids at the end of the evening and handed out gifts to the kids.
I'm going to give you a little background on Aiden's school.
It began 35 years ago by two parents who had visually impaired children. At that time, the only school for the blind was in Muskogee and it was a "go away" school (basically, an institution). These parents didn't want to send their children away. And also, the public schools weren't following along with inclusion, as it didn't exist then. So, how were these children supposed to be educated?
The parents started a little school in a single, small room of a church. As word spread, more and more parents of special needs children began to bring their children. And quickly, they out-grew the room. They needed more space, but unfortunately, more space costs more money. Funds were raised by private donations and a small play, The Wizard of Oz.
It was decided that the school would be a Christian based school. Being a Christian based school, means no funds would come from the state or the government. Bible based curriculum would be taught to the kids.
For the past 35 years the school has expanded into a multi-million dollar organization that does Gods work. It is the mission to teach even God's most special of miracles. Donations from both private, corporate, and local organizations help fund the school.
With these donations, tuition to the school is free. I couldn't even begin to imagine the cost of sending Aiden to a school like this with all the services provided. There is a teacher and aide in each class. There is also a physical therapy team, a speech therapy team, a vision therapist, and an occupational therapy team. Every day, Aiden and the other 63 children get these services. Plus, the school provides standing and walking aides to those who need it. The gym is huge and has all these cool therapy toys.
Last night's party had several sponsors. The Tulsa Vette Club provided "Santa bags" to each child enrolled in the school. Aiden got a G Baby Magic Touch by GeoMag. This looks so neat! I can't wait to open it.
Also the families got a gift bag. Inside was a special made "A Night in Bethlehem" Nativity scene globe that hangs above the town of Bethlehem.
I took several pictures of the night, so here they are:
The Christmas play
Miss Marcia (the founder of the school)
and YES, she really is one of God's Angels
Molly and Morgan (Morgan was featured in the Times Square NYC Buddy Walk
Miss Sharran (she is Aiden's volunteer on Thursdays)
Aiden Meets Santa
When we got there, they had a live Nativity scene. Jessica, the speech therapist, had graciously allowed her new baby to play the part of baby Jesus. I wish I had taken a picture, but alas, it was cold and Aiden was in my arms covered up.
Inside, the teachers and other staff members were dressed as they did in the time of Mary and Joseph. Inside the school, Aiden got a little burlap bag with little "coins" to purchase merchandise. They had bread, jewelry making, incense making, a food market, a Bethlehem theatre (which the play was absolutely adorable!).
Miss Kate, Aiden's teacher in the Orange Class, personally knows Santa Claus; or at least her husband does. Miss Kate's husband, Rob, dressed up as Santa for the kids at the end of the evening and handed out gifts to the kids.
I'm going to give you a little background on Aiden's school.
It began 35 years ago by two parents who had visually impaired children. At that time, the only school for the blind was in Muskogee and it was a "go away" school (basically, an institution). These parents didn't want to send their children away. And also, the public schools weren't following along with inclusion, as it didn't exist then. So, how were these children supposed to be educated?
The parents started a little school in a single, small room of a church. As word spread, more and more parents of special needs children began to bring their children. And quickly, they out-grew the room. They needed more space, but unfortunately, more space costs more money. Funds were raised by private donations and a small play, The Wizard of Oz.
It was decided that the school would be a Christian based school. Being a Christian based school, means no funds would come from the state or the government. Bible based curriculum would be taught to the kids.
For the past 35 years the school has expanded into a multi-million dollar organization that does Gods work. It is the mission to teach even God's most special of miracles. Donations from both private, corporate, and local organizations help fund the school.
With these donations, tuition to the school is free. I couldn't even begin to imagine the cost of sending Aiden to a school like this with all the services provided. There is a teacher and aide in each class. There is also a physical therapy team, a speech therapy team, a vision therapist, and an occupational therapy team. Every day, Aiden and the other 63 children get these services. Plus, the school provides standing and walking aides to those who need it. The gym is huge and has all these cool therapy toys.
Last night's party had several sponsors. The Tulsa Vette Club provided "Santa bags" to each child enrolled in the school. Aiden got a G Baby Magic Touch by GeoMag. This looks so neat! I can't wait to open it.
Also the families got a gift bag. Inside was a special made "A Night in Bethlehem" Nativity scene globe that hangs above the town of Bethlehem.
I took several pictures of the night, so here they are:
You Know You Have a Special Needs Child When...
* You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.
* You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)
* You fired at least 3 pediatricians and can teach your family doctor a thing or two.
* Everything is an educational opportunity instead of just having plain old fun.
* The clothes your infant wore last fall still fit her this fall.
* You view toys as “therapy”.
* You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that’s speech therapy), smear ketchup all over their high chair (that’s OT), or throw their toys (that’s PT).
* You also don’t mind if your child goes through the house tooting on a tin whistle.
* You compare ER’s instead of grocery stores.
* You have been told you are in “denial” by at least 3 medical or therapy
professionals. This makes you laugh!
* You have the incredible sinking feeling that you’ve forgotten SOMETHING on those few days that you don’t have some sort of appointment somewhere!
* You get irritated when friends with healthy kids complain about ONE sleepless night when their child is ill.
* Your vocabulary consists of all the letters OT, PT, SP, ADS, VDS, IFSP, etc.
* You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over with…you waited 8 months to get it…and besides, no one else will be there!
* Fighting and wrestling with siblings is considered PT.
* Speech therapy occurs in the tub with a sibling.
* You discuss your child’s oxygen saturations with other moms.
* When potty training is complete, you take out a full-page public notice in the Washington Post.
* The Doctors/Specialists/Hospitals etc. all know you by your name without referring to your chart.
* You keep a daily growth chart.
* You phone all your friends when your child sits up for the first time, at age two.
* With a big smile on your face you tell a stranger that your four year old child just started walking last week.
* His medical file is several inches thick and growing.
* You never take a new day for granted.
* You have a new belief…that angels live with us on earth.
* You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)
* You fired at least 3 pediatricians and can teach your family doctor a thing or two.
* Everything is an educational opportunity instead of just having plain old fun.
* The clothes your infant wore last fall still fit her this fall.
* You view toys as “therapy”.
* You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that’s speech therapy), smear ketchup all over their high chair (that’s OT), or throw their toys (that’s PT).
* You also don’t mind if your child goes through the house tooting on a tin whistle.
* You compare ER’s instead of grocery stores.
* You have been told you are in “denial” by at least 3 medical or therapy
professionals. This makes you laugh!
* You have the incredible sinking feeling that you’ve forgotten SOMETHING on those few days that you don’t have some sort of appointment somewhere!
* You get irritated when friends with healthy kids complain about ONE sleepless night when their child is ill.
* Your vocabulary consists of all the letters OT, PT, SP, ADS, VDS, IFSP, etc.
* You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over with…you waited 8 months to get it…and besides, no one else will be there!
* Fighting and wrestling with siblings is considered PT.
* Speech therapy occurs in the tub with a sibling.
* You discuss your child’s oxygen saturations with other moms.
* When potty training is complete, you take out a full-page public notice in the Washington Post.
* The Doctors/Specialists/Hospitals etc. all know you by your name without referring to your chart.
* You keep a daily growth chart.
* You phone all your friends when your child sits up for the first time, at age two.
* With a big smile on your face you tell a stranger that your four year old child just started walking last week.
* His medical file is several inches thick and growing.
* You never take a new day for granted.
* You have a new belief…that angels live with us on earth.
Thursday, December 6, 2007
And the Day Starts at What Time?
Chris injured his back. Like herniated disc injured. So he isn't working currently, they put him on short-term disability. He woke up shortly after 5 this morning.
Harley heard Chris get up. Therefore, Harley was up a few minutes after Chris. I got up to let Harley out. When Harley came back inside, I put him back in his bed and I went back to bed.
I thought I was going back to bed........
Just as I got comfortable, Aiden woke up. And this wasn't one of his "Mommy, rub my back" wake ups. This was a full blown, "Give me my morning bottle, I'm ready to be up for the day." I got up and fixed Aiden his bottle. I took him back to bed with us. Instead, he laid there talking and laughing. I got out of bed and brought Aiden into the living room.
I decided to call Aiden in at school. If I took him to school, Chris would need me back at the house. Then I would have to go get Aiden and come back to the house. Then this evening, another trip to Tulsa for a meeting.
Aiden ate his bottle and was playing. Chris got up, because his medications haven't kicked in yet. Because everyone was up, Harley wanted out of his crate.
Why is it that when everyone wakes up, it has to be before the crack of dawn?
Harley heard Chris get up. Therefore, Harley was up a few minutes after Chris. I got up to let Harley out. When Harley came back inside, I put him back in his bed and I went back to bed.
I thought I was going back to bed........
Just as I got comfortable, Aiden woke up. And this wasn't one of his "Mommy, rub my back" wake ups. This was a full blown, "Give me my morning bottle, I'm ready to be up for the day." I got up and fixed Aiden his bottle. I took him back to bed with us. Instead, he laid there talking and laughing. I got out of bed and brought Aiden into the living room.
I decided to call Aiden in at school. If I took him to school, Chris would need me back at the house. Then I would have to go get Aiden and come back to the house. Then this evening, another trip to Tulsa for a meeting.
Aiden ate his bottle and was playing. Chris got up, because his medications haven't kicked in yet. Because everyone was up, Harley wanted out of his crate.
Why is it that when everyone wakes up, it has to be before the crack of dawn?
From Parenting Magazine
Life With Anthony
He's a cute, sweet, happy toddler -- with Down syndrome. A generation ago, he'd probably be growing up in an institution -- but today his world is open
By Margaret Renkl
For parents with three small kids — Michael is 4, Jack's 3, and Anthony is 19 months — Lisa and Mike Spellman are surprisingly calm people. From the jumble of bike helmets and bright plastic toys, to the family pictures on every table, to the five baby gates in the downstairs alone, it's obvious that they've happily surrendered to parenthood. Lisa (a former attorney, now an at-home mom) and Mike (a neuroradiologist) take it all in stride, even when the volume in their Nashville house approaches deafening.
In the playroom, Michael and Jack roll their toy cars while Anthony watches, rapt, following their every move and laughing whenever they do. He's too young to get the joke or participate in the game, but he's fully part of the gang. And when he laughs, with his head tilted to one side and his eyes squinched almost closed, he's a redheaded copy of blond Jack.
So when Mike was at his high school reunion on Long Island a while back and going on a bit about the radical changes in his life since he became a dad, he was startled to hear an old friend say sympathetically, "I could never understand what you're going through." Mike just looked at him. "It took me a while to realize what he was talking about," he says.
Devastating news
The friend was talking about Down syndrome, a diagnosis the Spellmans received in the delivery room when Anthony was born. The most common form of Down syndrome — named for the British physician who first described its physical traits in 1866 — is trisomy 21; it's a genetic anomaly in which a person has three copies of the 21st chromosome, instead of the standard two. The extra genetic material is believed to cause hearing loss, impaired vision, respiratory difficulty, and cardiac defects, among other health problems — as well as mild to moderate cognitive disability. For Mike's friend, the idea of raising a child with so many problems must have seemed overwhelming.
One in every 733 babies (about 5,500 a year) in the U.S. is born with Down syndrome, most to parents, like the Spellmans, who had no special risk factors. Older mothers are more likely to have a baby with Down syndrome, but 80 percent are born to women under age 35, because more in this age group have kids and, until this year, they weren't routinely tested in the first trimester. But two noninvasive blood tests combined with a new ultrasound can identify Down with 87 percent accuracy at 11 weeks' gestation, without risk of miscarriage. Currently (and controversially), an estimated 90 percent of Down pregnancies are terminated, but this new test may raise that percentage.
Not that it would have changed anything for Lisa.
"Whatever those tests might have revealed, it wouldn't have changed our minds about the pregnancy," she says. When she went into labor, her biggest fear for her baby was prematurity — her due date was a full month away.
After Anthony was born, though, everything seemed fine. He wasn't struggling to breathe, his Apgar scores were good, and he pinked right up. The delivery room nurses took him to the nursery, explaining that they wanted the pediatricians making rounds to see him.
When an hour and a half had passed and the nurses weren't back with her baby, Lisa began to worry, and Mike was being very, very quiet. As the minutes ticked by, Lisa kept asking, "Where is he? I want him to start nursing. Where is he? Is something wrong?" Mike, who'd noticed that his new son had many of the telltale signs of Down syndrome — a flat face, an upward slant to the eyes, a crease in the middle of each palm — hoped he was mistaken and said nothing. "I didn't want to worry Lisa," he says. "What if I was wrong?"
When a doctor finally came in, his look told Mike he wasn't mistaken. Lisa was stunned. Even now, she tears up and her voice trembles as she remembers: "I got blindsided. I couldn't help feeling I'd done something to harm him. You take your prenatal vitamins, buy the bassinet and clothes, then you pack your hospital bag — you've prepared for the test. With Down syndrome, for the first time in my life I hadn't prepared for the test."
Coming to terms
Mike and Lisa held each other and cried. Then they pondered what the rest of their lives would mean. "We thought we'd go down one path, and now the map has changed," Mike told Lisa. "That's all. We have to learn a new path."
Their resolve was bolstered by a visit from their pediatrician, Chris Patton, M.D. He took their hands and said, "There are a lot of things I can't tell you about the future. What I can tell you is that you're going to take Anthony home, and care for him and love him, just as you did Michael and Jack. And beyond that, we'll take it one day at a time."
Still, even as they fell more and more in love with their easygoing third child, they struggled with guilt, says Mike, as he cuddles a sleeping Anthony. "I never for one minute didn't accept him, but I didn't accept his diagnosis right away. Now that seems like such a selfish response."
Beyond the guilt, there was mourning. "For the longest time, every time I'd talk about Anthony I would cry, and I didn't know why," says Lisa. Looking back, she understands: "Life is different from what I anticipated, and I had to give myself time to grieve that loss."
Facing the hurdles
Anthony, like about 50 percent of babies with Down syndrome, was born with a cardiac defect: a tiny hole between the two upper chambers of the heart. Luckily, his condition isn't life threatening. In many babies, the hole closes naturally; if it hasn't by age 3, surgery may be necessary, but it looks like Anthony's will close on its own.
Vision and hearing problems are common, too; Anthony wears glasses to correct severe nearsightedness in one eye. Like many other kids with Down syndrome, he has very small eustachian tubes that can cause fluid to pool behind the eardrums. Recent surgery — putting in the same kind of tubes kids prone to ear infections get — successfully dealt with the problem, so Anthony will not need a hearing aid.
He also faces a daunting array of social and cognitive challenges, but there's good news for him — and for kids with other disabilities that cause developmental delays, such as cerebral palsy and autism: Early-intervention programs, federally mandated and state administered, can help babies develop crucial speech and motor skills while their brains are still growing rapidly.
Early intervention educates parents, too. "They learn a lot about child development and can become their child's best teachers," says Karen Summar, M.D., director of the Down Syndrome Clinic at Vanderbilt Children's Hospital in Nashville and mom of a teenager with Down syndrome. The support is priceless, says Lisa. "I'd always thought I could do it all myself. But I'll tell you what — I accept help now! With early intervention, I'm not alone. I have a resource."
Opening up his world
At about 6 weeks, Anthony began sessions coordinated by Tennessee Early Intervention System. Amy Hirt, a parent adviser trained in child development, comes to the house weekly to watch Anthony and suggest ways Lisa can incorporate therapy techniques into everyday activities. At 8 months, for instance, if Anthony reached out with one hand to pick up a toy, he'd put down the toy in the other hand. (Typically developing children can hold a toy in each hand by that age.) So Hirt showed Lisa how to help him hold an object in each hand, or to pass an object from one hand to another. Even Michael gets into the spirit, holding out a toy and encouraging his baby brother: "Get it, Anthony. You can get it!"
Many children with Down syndrome are born with a high palate and a thrusting tongue. Aside from speech therapy, Anthony also needed help eating from a spoon. Lori Guimond, a feeding therapist at Vanderbilt Children's Hospital, suggested a special spoon with a very shallow bowl, and she taught Lisa to stop doing what all mothers do — scraping the spoon against the top of the baby's mouth. Anthony needed to learn to take the food off the spoon himself. Demonstrating, Lisa offers Anthony a spoonful of applesauce. Clearly concentrating, he leans forward, opens his mouth, closes it around the spoon, and pulls back — perfect. Lisa puts down the empty spoon to clap, squealing "Good boy!" as he grins broadly.
Anthony also gets occupational therapy monthly and physical therapy once a week with the Vanderbilt clinic's Pediatric Rehabilitation Services. Occupational therapy helps kids hone fine motor skills such as reaching out, grasping a peg, and pulling it out of a board — motions necessary, later on, for the daily tasks of independent living, like turning a doorknob and brushing their teeth. Physical therapy helps them develop gross motor skills needed to roll over, sit up, and stand.
Kids with Down syndrome tend to have both low muscle tone and hyperflexible joints. When Anthony lies on his belly, his legs flop open, "frog style." Without early intervention, most children with Down syndrome compensate by learning to sit up, to crawl, and then to walk in ways that stress joints and can lead to orthopedic problems as an adult.
So Anthony wears "Hip Helpers" — spandex shorts that are sewn together from the crotch to the knees — whenever he's playing on the floor. When Lisa shimmies him into the Hip Helpers and plops him down to play with his brothers, Anthony doesn't seem to mind his outfit. He scoots over to a stuffed Tigger and gnaws on its ear. Jack leans down to get a closer look. Anthony takes time out from Tigger to give his brother a big, slobbery smile.
Loving one-of-a-kind Anthony
For the Spellmans, that smile helps define their youngest son. Lisa says, "Anthony is special — not because he has special needs but because he has a special personality. He smiles and laughs all the time." For a while, Lisa and Mike wondered if their third child's even temperament — loving, calm, easily soothed — was a trait associated with his disability. "It's not because he has Down syndrome," says Dr. Patton. "It's because he's Anthony. That's just his personality."
To Michael and Jack, he's their baby brother, someone to play with, but studies show that siblings of children with Down syndrome learn kindness, empathy, and respect for diversity in greater measure than other kids. (And in turn, typically developing siblings can become inspiring role models for kids with Down syndrome.)
The divorce rate for couples with a disabled child is higher than the national average, but Lisa says, "Maybe it could have gone the other way, but our bond has only gotten stronger. You have to talk about so many issues — you have to communicate." Mike agrees: "We don't know where we're going, but we're going together."
Fears and hopes
The Spellmans face many questions in the years to come: Should they send Anthony to a school for special-needs kids or let him be mainstreamed with his brothers? Will other kids tease him because he's different? With new prenatal tests potentially causing a drop in the Down syndrome birthrate, will he have trouble finding friends as an adult? What about getting a job and living on his own someday? Will he marry? How should they arrange for Anthony's care after they're gone?
For now, though, he and his family are doing just fine. "I've seen Lisa go from being anxious at every visit to happily coming in for just a well check," says Dr. Patton. "They've all made a very long journey, and I see a sparkle, a love that's been blossoming since the moment they laid hands on that little guy."
Lisa remembers that after Anthony was born, the mom of a child with Down syndrome told her, "I know the deep, dark place you're in right now, and you're not going to be there forever." That prediction has come true.
"Anthony completes our family, and I wouldn't have him any other way," says Lisa. "He'll be teaching us all our lives — he's already taught me so much about patience. I see how hard he works to sit up, or to reach out for a toy, or to get up on all fours.
"You take for granted how easily things come to you, and to your other kids, but every day with Anthony, there's a new discovery, a new joy."
Parenting, December/January 2008
He's a cute, sweet, happy toddler -- with Down syndrome. A generation ago, he'd probably be growing up in an institution -- but today his world is open
By Margaret Renkl
For parents with three small kids — Michael is 4, Jack's 3, and Anthony is 19 months — Lisa and Mike Spellman are surprisingly calm people. From the jumble of bike helmets and bright plastic toys, to the family pictures on every table, to the five baby gates in the downstairs alone, it's obvious that they've happily surrendered to parenthood. Lisa (a former attorney, now an at-home mom) and Mike (a neuroradiologist) take it all in stride, even when the volume in their Nashville house approaches deafening.
In the playroom, Michael and Jack roll their toy cars while Anthony watches, rapt, following their every move and laughing whenever they do. He's too young to get the joke or participate in the game, but he's fully part of the gang. And when he laughs, with his head tilted to one side and his eyes squinched almost closed, he's a redheaded copy of blond Jack.
So when Mike was at his high school reunion on Long Island a while back and going on a bit about the radical changes in his life since he became a dad, he was startled to hear an old friend say sympathetically, "I could never understand what you're going through." Mike just looked at him. "It took me a while to realize what he was talking about," he says.
Devastating news
The friend was talking about Down syndrome, a diagnosis the Spellmans received in the delivery room when Anthony was born. The most common form of Down syndrome — named for the British physician who first described its physical traits in 1866 — is trisomy 21; it's a genetic anomaly in which a person has three copies of the 21st chromosome, instead of the standard two. The extra genetic material is believed to cause hearing loss, impaired vision, respiratory difficulty, and cardiac defects, among other health problems — as well as mild to moderate cognitive disability. For Mike's friend, the idea of raising a child with so many problems must have seemed overwhelming.
One in every 733 babies (about 5,500 a year) in the U.S. is born with Down syndrome, most to parents, like the Spellmans, who had no special risk factors. Older mothers are more likely to have a baby with Down syndrome, but 80 percent are born to women under age 35, because more in this age group have kids and, until this year, they weren't routinely tested in the first trimester. But two noninvasive blood tests combined with a new ultrasound can identify Down with 87 percent accuracy at 11 weeks' gestation, without risk of miscarriage. Currently (and controversially), an estimated 90 percent of Down pregnancies are terminated, but this new test may raise that percentage.
Not that it would have changed anything for Lisa.
"Whatever those tests might have revealed, it wouldn't have changed our minds about the pregnancy," she says. When she went into labor, her biggest fear for her baby was prematurity — her due date was a full month away.
After Anthony was born, though, everything seemed fine. He wasn't struggling to breathe, his Apgar scores were good, and he pinked right up. The delivery room nurses took him to the nursery, explaining that they wanted the pediatricians making rounds to see him.
When an hour and a half had passed and the nurses weren't back with her baby, Lisa began to worry, and Mike was being very, very quiet. As the minutes ticked by, Lisa kept asking, "Where is he? I want him to start nursing. Where is he? Is something wrong?" Mike, who'd noticed that his new son had many of the telltale signs of Down syndrome — a flat face, an upward slant to the eyes, a crease in the middle of each palm — hoped he was mistaken and said nothing. "I didn't want to worry Lisa," he says. "What if I was wrong?"
When a doctor finally came in, his look told Mike he wasn't mistaken. Lisa was stunned. Even now, she tears up and her voice trembles as she remembers: "I got blindsided. I couldn't help feeling I'd done something to harm him. You take your prenatal vitamins, buy the bassinet and clothes, then you pack your hospital bag — you've prepared for the test. With Down syndrome, for the first time in my life I hadn't prepared for the test."
Coming to terms
Mike and Lisa held each other and cried. Then they pondered what the rest of their lives would mean. "We thought we'd go down one path, and now the map has changed," Mike told Lisa. "That's all. We have to learn a new path."
Their resolve was bolstered by a visit from their pediatrician, Chris Patton, M.D. He took their hands and said, "There are a lot of things I can't tell you about the future. What I can tell you is that you're going to take Anthony home, and care for him and love him, just as you did Michael and Jack. And beyond that, we'll take it one day at a time."
Still, even as they fell more and more in love with their easygoing third child, they struggled with guilt, says Mike, as he cuddles a sleeping Anthony. "I never for one minute didn't accept him, but I didn't accept his diagnosis right away. Now that seems like such a selfish response."
Beyond the guilt, there was mourning. "For the longest time, every time I'd talk about Anthony I would cry, and I didn't know why," says Lisa. Looking back, she understands: "Life is different from what I anticipated, and I had to give myself time to grieve that loss."
Facing the hurdles
Anthony, like about 50 percent of babies with Down syndrome, was born with a cardiac defect: a tiny hole between the two upper chambers of the heart. Luckily, his condition isn't life threatening. In many babies, the hole closes naturally; if it hasn't by age 3, surgery may be necessary, but it looks like Anthony's will close on its own.
Vision and hearing problems are common, too; Anthony wears glasses to correct severe nearsightedness in one eye. Like many other kids with Down syndrome, he has very small eustachian tubes that can cause fluid to pool behind the eardrums. Recent surgery — putting in the same kind of tubes kids prone to ear infections get — successfully dealt with the problem, so Anthony will not need a hearing aid.
He also faces a daunting array of social and cognitive challenges, but there's good news for him — and for kids with other disabilities that cause developmental delays, such as cerebral palsy and autism: Early-intervention programs, federally mandated and state administered, can help babies develop crucial speech and motor skills while their brains are still growing rapidly.
Early intervention educates parents, too. "They learn a lot about child development and can become their child's best teachers," says Karen Summar, M.D., director of the Down Syndrome Clinic at Vanderbilt Children's Hospital in Nashville and mom of a teenager with Down syndrome. The support is priceless, says Lisa. "I'd always thought I could do it all myself. But I'll tell you what — I accept help now! With early intervention, I'm not alone. I have a resource."
Opening up his world
At about 6 weeks, Anthony began sessions coordinated by Tennessee Early Intervention System. Amy Hirt, a parent adviser trained in child development, comes to the house weekly to watch Anthony and suggest ways Lisa can incorporate therapy techniques into everyday activities. At 8 months, for instance, if Anthony reached out with one hand to pick up a toy, he'd put down the toy in the other hand. (Typically developing children can hold a toy in each hand by that age.) So Hirt showed Lisa how to help him hold an object in each hand, or to pass an object from one hand to another. Even Michael gets into the spirit, holding out a toy and encouraging his baby brother: "Get it, Anthony. You can get it!"
Many children with Down syndrome are born with a high palate and a thrusting tongue. Aside from speech therapy, Anthony also needed help eating from a spoon. Lori Guimond, a feeding therapist at Vanderbilt Children's Hospital, suggested a special spoon with a very shallow bowl, and she taught Lisa to stop doing what all mothers do — scraping the spoon against the top of the baby's mouth. Anthony needed to learn to take the food off the spoon himself. Demonstrating, Lisa offers Anthony a spoonful of applesauce. Clearly concentrating, he leans forward, opens his mouth, closes it around the spoon, and pulls back — perfect. Lisa puts down the empty spoon to clap, squealing "Good boy!" as he grins broadly.
Anthony also gets occupational therapy monthly and physical therapy once a week with the Vanderbilt clinic's Pediatric Rehabilitation Services. Occupational therapy helps kids hone fine motor skills such as reaching out, grasping a peg, and pulling it out of a board — motions necessary, later on, for the daily tasks of independent living, like turning a doorknob and brushing their teeth. Physical therapy helps them develop gross motor skills needed to roll over, sit up, and stand.
Kids with Down syndrome tend to have both low muscle tone and hyperflexible joints. When Anthony lies on his belly, his legs flop open, "frog style." Without early intervention, most children with Down syndrome compensate by learning to sit up, to crawl, and then to walk in ways that stress joints and can lead to orthopedic problems as an adult.
So Anthony wears "Hip Helpers" — spandex shorts that are sewn together from the crotch to the knees — whenever he's playing on the floor. When Lisa shimmies him into the Hip Helpers and plops him down to play with his brothers, Anthony doesn't seem to mind his outfit. He scoots over to a stuffed Tigger and gnaws on its ear. Jack leans down to get a closer look. Anthony takes time out from Tigger to give his brother a big, slobbery smile.
Loving one-of-a-kind Anthony
For the Spellmans, that smile helps define their youngest son. Lisa says, "Anthony is special — not because he has special needs but because he has a special personality. He smiles and laughs all the time." For a while, Lisa and Mike wondered if their third child's even temperament — loving, calm, easily soothed — was a trait associated with his disability. "It's not because he has Down syndrome," says Dr. Patton. "It's because he's Anthony. That's just his personality."
To Michael and Jack, he's their baby brother, someone to play with, but studies show that siblings of children with Down syndrome learn kindness, empathy, and respect for diversity in greater measure than other kids. (And in turn, typically developing siblings can become inspiring role models for kids with Down syndrome.)
The divorce rate for couples with a disabled child is higher than the national average, but Lisa says, "Maybe it could have gone the other way, but our bond has only gotten stronger. You have to talk about so many issues — you have to communicate." Mike agrees: "We don't know where we're going, but we're going together."
Fears and hopes
The Spellmans face many questions in the years to come: Should they send Anthony to a school for special-needs kids or let him be mainstreamed with his brothers? Will other kids tease him because he's different? With new prenatal tests potentially causing a drop in the Down syndrome birthrate, will he have trouble finding friends as an adult? What about getting a job and living on his own someday? Will he marry? How should they arrange for Anthony's care after they're gone?
For now, though, he and his family are doing just fine. "I've seen Lisa go from being anxious at every visit to happily coming in for just a well check," says Dr. Patton. "They've all made a very long journey, and I see a sparkle, a love that's been blossoming since the moment they laid hands on that little guy."
Lisa remembers that after Anthony was born, the mom of a child with Down syndrome told her, "I know the deep, dark place you're in right now, and you're not going to be there forever." That prediction has come true.
"Anthony completes our family, and I wouldn't have him any other way," says Lisa. "He'll be teaching us all our lives — he's already taught me so much about patience. I see how hard he works to sit up, or to reach out for a toy, or to get up on all fours.
"You take for granted how easily things come to you, and to your other kids, but every day with Anthony, there's a new discovery, a new joy."
Parenting, December/January 2008
Wednesday, December 5, 2007
And We Have Reservations........
Aiden's next heart cath procedure has been set for December 27. Yep, 2 days AFTER Christmas.
Oh, and we got to go through the secret passage way to get from Dr. Cardiologist's office to the hospital. (I'll have to remember that one.) I like the secret passage way. It is quicker than having to ride the elevator down to the first floor, loading Aiden up in the car seat, driving around the hospital's parking area, fighting for a spot to park, unloading Aiden, taking an elevator to the second floor, and walking halfway through the hospital to get to the lab.
Oh, and we got to go through the secret passage way to get from Dr. Cardiologist's office to the hospital. (I'll have to remember that one.) I like the secret passage way. It is quicker than having to ride the elevator down to the first floor, loading Aiden up in the car seat, driving around the hospital's parking area, fighting for a spot to park, unloading Aiden, taking an elevator to the second floor, and walking halfway through the hospital to get to the lab.
A Letter to Santa (though the eyes of a Special Needs Mom)
Dear Santa,
Please forgive any errors in this letter, as I am writing it on our way to therapy, or was it a doctor appointment? I don't remember, my day planner is in my purse somewhere in the back seat between the oxygen bottle and the oxometer.
I have tried to be really good this year. I only yelled at three nurses and kicked one out of the hospital room. I did manage to avoid slapping the specialist, however. I have suctioned, gone without sleep, found a way to sleep in those uncomfortable chairs at the hospital, and managed to put more miles on my vehicle than the manufacturer recommends. I have changed bedding while sleep walking due to constant throwing up. My laundry pile has gone from 1 basket to 4, thanks to reflux. I have cancelled hair appointments for urgent matters at the doctor. And I didn't yell at the school professionals for presenting that incredible IEP. I sat through numerous hours waiting for hearing aid and orthopedic shoe fittings. And don't forgot all the phone calls, emails, and friendly reminders about fundraisers. I even went to several funerals for those angels God decided to call back to Heaven.
**And here is my wish list**
A years worth of Pediasure
A maid to clean the house since I don't have time anymore
A chef to cook for the other children
Doctors who can diagnosis new problems and not the "I'm not sure"
A minimum of 3 months without seeing a hospital room
A snappy comeback for all the stupid looks we get in public
One day that I don't feel guilty for all the things I should be doing for my child that I'm not, ie: just one more book, one more flashcard, one more time up the steps, etc. I am so tired...
A glimpse into the future to see where my child is and how I can better prepare her/him
A medically uneventful year
Oh, and the big screen television that the opthamologist recommed for far-sightedness
Of course, none of this is necessary if you want me to lose my sanity. BUT, they would be nice.
I must go now as monitors are beeping and children are fighting, traffic is backed up, and I think I missed my exit.
Sincerly,
Mom
P.S. Please forget that you tripped over the physical therapy equiptment last year.... And I saved your hat incase you want it back.
Please forgive any errors in this letter, as I am writing it on our way to therapy, or was it a doctor appointment? I don't remember, my day planner is in my purse somewhere in the back seat between the oxygen bottle and the oxometer.
I have tried to be really good this year. I only yelled at three nurses and kicked one out of the hospital room. I did manage to avoid slapping the specialist, however. I have suctioned, gone without sleep, found a way to sleep in those uncomfortable chairs at the hospital, and managed to put more miles on my vehicle than the manufacturer recommends. I have changed bedding while sleep walking due to constant throwing up. My laundry pile has gone from 1 basket to 4, thanks to reflux. I have cancelled hair appointments for urgent matters at the doctor. And I didn't yell at the school professionals for presenting that incredible IEP. I sat through numerous hours waiting for hearing aid and orthopedic shoe fittings. And don't forgot all the phone calls, emails, and friendly reminders about fundraisers. I even went to several funerals for those angels God decided to call back to Heaven.
**And here is my wish list**
A years worth of Pediasure
A maid to clean the house since I don't have time anymore
A chef to cook for the other children
Doctors who can diagnosis new problems and not the "I'm not sure"
A minimum of 3 months without seeing a hospital room
A snappy comeback for all the stupid looks we get in public
One day that I don't feel guilty for all the things I should be doing for my child that I'm not, ie: just one more book, one more flashcard, one more time up the steps, etc. I am so tired...
A glimpse into the future to see where my child is and how I can better prepare her/him
A medically uneventful year
Oh, and the big screen television that the opthamologist recommed for far-sightedness
Of course, none of this is necessary if you want me to lose my sanity. BUT, they would be nice.
I must go now as monitors are beeping and children are fighting, traffic is backed up, and I think I missed my exit.
Sincerly,
Mom
P.S. Please forget that you tripped over the physical therapy equiptment last year.... And I saved your hat incase you want it back.
Let's Not Use Words that Wound
This is an article that was printed in the Boston Globe. Maybe it will shed some light on the offensiveness of the word "retard."
BEVERLY BECKHAM March 25, 2007
I like to believe that it's a lack of thought and not meanness that makes people use words that hurt. That they're going with the flow, following the crowd, saying what everyone else is saying with no intent to wound.
But words do wound.
My granddaughter Lucy is 3 years old. She has dark blonde hair, green eyes, and Down syndrome.
Even before she was born, I bristled at the use of the word: "That outfit looks retarded." "He's a retard." "I'm not driving all the way over there. That's retarded." It was mostly teenagers who said it then, and twenty somethings. Now the word has gone mainstream.
It's on TV. In movies. On the radio. In books. In music. It was the title of a Black Eyed Peas hit song, "Let's Get Retarded," which was changed (because the ARC of the United States, formerly known as the Association for Retarded Citizens, wrote and objected?) to "Let's Get It Started." But it played to sell-out crowds as "Let's Get Retarded" because retarded is a popular West Coast term that, according to Songfacts, is "chanted at clubs and dances and used in everyday slang" and means "to go crazy on the dance floor" (synonyms are "Go Dumb" and "Get/Go Stupid").
The word is also all over the Internet. Retarded has even spawned new words: celebutard, a famous stupid person; debutard, a rich stupid person; e-tard, a stupid Internet user -- stupid being the common denominator, and "tard" a suffix and a word in itself. ("Tard: Adjective used to describe one so retarded, they do not deserve the 're' " -- Urban Dictionary.) Which is why the Massachusetts Department of Mental Retardation must change its name. And soon. Originally known as the Division of Mental Retardation under the Department of Mental Health, it kept "mental retardation" in its title when it changed its name 20 years ago.
Even then, retarded was a word with too much baggage. But now it's worse, bringing back movie images of wards full of dull-eyed people with mismatched clothes, bad teeth, and shuffling gaits. The village idiot, mocked and scorned. Hollywood gave us these pictures of the mentally challenged. Maybe they were accurate at the time; maybe they weren't. What is unarguable is that they are not a picture of the cognitively disabled now.
Now is different. Now is a better world for all people with any kind of disability. Now there's inclusion and handicap access and Braille and aides and closed caption TV and community support and group homes and amazing amounts of empathy and understanding. Which makes the use of the word retard by people who should and do know better, curious. Why the surge in use of this word now? Lindsay Lohan has used it. Paris Hilton. Britney Spears. Courtney Love. Bill Maher. It's out there being said by the rich and famous. Two steps forward, one step back.
Words matter. Yes. No. Come back. Go away. It's benign. It's malignant. Learning disabled. Special needs. Intellectual and developmental disabilities. Cognitively challenged. Words change the way we think. Everyone knows someone who is challenged in some way -- who has autism or cancer, who is head-injured or depressed, who has war wounds, who is old -- people who need extra time or help or support to get along in the world. And in our world today, we assist these people. We -- most of us -- do not mock them.
There are exceptions. On the Internet, when you Google "retarded" up comes a picture of a boy with Down syndrome. He has dark hair and a big smile and he's running a race, his feet in the air, his arms out straight as if he is flying. The picture is sweet. The boy looks happy. But the words on the picture are toxic: "Arguing on the Internet is like running in the Special Olympics. Even if you win, you're still retarded." The word is a throwback and a setback. It's insulting, demeaning, and hurtful, and it is all over the place.
Legislation to change the name of the Department of Mental Retardation has been filed, and Commissioner Gerald Morrissey supports it. "This is an issue about dignity and respect," he says. "About all citizens of the Commonwealth being treated with respect." Call it a euphemism. Call it political correctness. Call it superfluous, getting rid of a word.
Call it whatever you want.
Just don't call it the Department of Mental Retardation anymore.
BEVERLY BECKHAM March 25, 2007
I like to believe that it's a lack of thought and not meanness that makes people use words that hurt. That they're going with the flow, following the crowd, saying what everyone else is saying with no intent to wound.
But words do wound.
My granddaughter Lucy is 3 years old. She has dark blonde hair, green eyes, and Down syndrome.
Even before she was born, I bristled at the use of the word: "That outfit looks retarded." "He's a retard." "I'm not driving all the way over there. That's retarded." It was mostly teenagers who said it then, and twenty somethings. Now the word has gone mainstream.
It's on TV. In movies. On the radio. In books. In music. It was the title of a Black Eyed Peas hit song, "Let's Get Retarded," which was changed (because the ARC of the United States, formerly known as the Association for Retarded Citizens, wrote and objected?) to "Let's Get It Started." But it played to sell-out crowds as "Let's Get Retarded" because retarded is a popular West Coast term that, according to Songfacts, is "chanted at clubs and dances and used in everyday slang" and means "to go crazy on the dance floor" (synonyms are "Go Dumb" and "Get/Go Stupid").
The word is also all over the Internet. Retarded has even spawned new words: celebutard, a famous stupid person; debutard, a rich stupid person; e-tard, a stupid Internet user -- stupid being the common denominator, and "tard" a suffix and a word in itself. ("Tard: Adjective used to describe one so retarded, they do not deserve the 're' " -- Urban Dictionary.) Which is why the Massachusetts Department of Mental Retardation must change its name. And soon. Originally known as the Division of Mental Retardation under the Department of Mental Health, it kept "mental retardation" in its title when it changed its name 20 years ago.
Even then, retarded was a word with too much baggage. But now it's worse, bringing back movie images of wards full of dull-eyed people with mismatched clothes, bad teeth, and shuffling gaits. The village idiot, mocked and scorned. Hollywood gave us these pictures of the mentally challenged. Maybe they were accurate at the time; maybe they weren't. What is unarguable is that they are not a picture of the cognitively disabled now.
Now is different. Now is a better world for all people with any kind of disability. Now there's inclusion and handicap access and Braille and aides and closed caption TV and community support and group homes and amazing amounts of empathy and understanding. Which makes the use of the word retard by people who should and do know better, curious. Why the surge in use of this word now? Lindsay Lohan has used it. Paris Hilton. Britney Spears. Courtney Love. Bill Maher. It's out there being said by the rich and famous. Two steps forward, one step back.
Words matter. Yes. No. Come back. Go away. It's benign. It's malignant. Learning disabled. Special needs. Intellectual and developmental disabilities. Cognitively challenged. Words change the way we think. Everyone knows someone who is challenged in some way -- who has autism or cancer, who is head-injured or depressed, who has war wounds, who is old -- people who need extra time or help or support to get along in the world. And in our world today, we assist these people. We -- most of us -- do not mock them.
There are exceptions. On the Internet, when you Google "retarded" up comes a picture of a boy with Down syndrome. He has dark hair and a big smile and he's running a race, his feet in the air, his arms out straight as if he is flying. The picture is sweet. The boy looks happy. But the words on the picture are toxic: "Arguing on the Internet is like running in the Special Olympics. Even if you win, you're still retarded." The word is a throwback and a setback. It's insulting, demeaning, and hurtful, and it is all over the place.
Legislation to change the name of the Department of Mental Retardation has been filed, and Commissioner Gerald Morrissey supports it. "This is an issue about dignity and respect," he says. "About all citizens of the Commonwealth being treated with respect." Call it a euphemism. Call it political correctness. Call it superfluous, getting rid of a word.
Call it whatever you want.
Just don't call it the Department of Mental Retardation anymore.
Tuesday, December 4, 2007
Monday, December 3, 2007
Mommy's Little Helper
Today was Chelsea's birthday. And we got her a car. We also bought enough balloons to fill the car up. Aiden was in balloon heaven while I was blowing up the balloons. He rolled all through them and I swear he had to kick every one of them.
For more on Chelsea's birthday, click here
Saturday, December 1, 2007
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