‘When he walked, I cried’
Posted by familysnows on 14 May 2007 at 9:24 pm | Tagged as: Down syndrome Awareness
By Rachel Gallegos Iowa City Press-Citizen
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AINSWORTH — Michelle McCarthy said she remembers seeing a television show about a family who decided to have their child with Down syndrome go through plastic surgery to change the noticeable facial features.
That is something she said her family would never do to their son, Nathan.
“I think that it’s actually a blessing that he has a disability that’s visible,” McCarthy said. “They give him a little more slack.”
Down syndrome, a genetic variation that causes a delay in physical, intellectual and language development, is estimated to be one of every 800 to 1,000 births, according to the National Down Syndrome Congress. There are about 225,000 families in the United States affected by Down syndrome.
In most ways, Nathan McCarthy, 8, is all boy. He wrestles with his twin brother, Gabe. He races his brothers on Hot Wheels tricycles down the sidewalk in front of the house. He swims like a fish and is a big eater.
Gabe does not have Down syndrome. When the twins were born at 34 weeks, Gabe was first, making him two minutes older than Nathan. Gabe, however, was the one born not breathing. Nathan came out screaming.
Seeing that outcome at birth, father Troy McCarthy said he knew “everything is going to be OK with Nathan. Our family is going to be OK.”
The couple learned 22 weeks into the pregnancy that they were going to have two boys — Michelle McCarthy said she was hoping for at least one girl — and that one of the two had Down syndrome. The doctor offered the couple selective reduction, something they say they are glad to have rejected.
Troy and Michelle McCarthy spent the next 10 weeks researching as much as they could about Down syndrome.
While Nathan is in after-school therapy, like Wednesday’s swimming lessons, the parents try to spend some one-on-one time with Gabe and older brother Austin, 10. At school, however, sometimes it is difficult to deal with the special attention Nathan gets. Troy McCarthy said he remembers walking down the halls one time and everyone was saying “Hi” to Nathan, but not to the other boys.
“People always follow him. They think he’s so cute and they think he’s harmless,” Gabe said. “They forget what happens when I wrestle him.”
Nathan is 8, but in first grade. Michelle McCarthy said it was a tough decision, but the couple decided to have him do two years of kindergarten. The first time, he was learning how to cope in the classroom, dealing with the rules and expectations. The second time, they got to focus more on the academics, his mother said.
Even as an Ainsworth Elementary first-grader, he is smaller than the 14 other students in his class. He’s only slightly taller than the other kids when they are sitting in their desk chairs.
He sits in the second row, farthest to the left, with his aide, Michelle Castillo, sitting at the end of his desk.
After lunch, the class came back to the room to work on the final drafts of their compositions, copying the rough drafts before recess. Castillo pointed to each word and letter to keep him on track.
Following recess, it’s time for science. The students paired up, borrowed blocks from the preschool room and were handed two balls and a handful of other objects. The students were learning about motion, this time using wind power by blowing through a straw to make a ping pong ball and a bouncy ball move and knock over the other objects.
Castillo encourages Nathan to get him going on the experiment.
“Get the dinosaur,” she said.
He blows, gasps for air, blows and gasps. And finally the ball gets to the end of the alley and knocks over the toy dinosaur and person.
“Yes, I did it!” Nathan said.
“Did you knock the dinosaur over?” Castillo said.
“Yeah!” said Nathan, pumping his arms into the air in excitement. “And the person!”
Nathan is mainstreamed, or placed in a regular education classroom, the majority of the day. For 30 minutes in the afternoon he goes into the Resource Room and 30 minutes in the morning the Resource Room teacher, Brenda Bean, comes into his classroom.
This past week, Resource Room students were still finishing up testing to see where they are on their Individualized Education Program goals. On Wednesday, Nathan was working on an addition worksheet.
He needs someone working with him to keep him on task. He uses touch points, dots on the number, to help with the counting. He picked those up rather quickly, Bean said. This year, he’s improved a lot, she said, learning a lot of words.
“He has made amazing progress this year,” she said. “There are actually books he can read now.”
Because people with Down syndrome are sometimes seen with their tongues partially out of their mouths, the common misconception is that they have a larger tongue than most people, his mother said.
In fact, it’s not the tongue, but the mouth that is a different size — smaller than other people. To help his speech, his parents and teachers encourage Nathan to “use your tongue” to help him sound out words.
Last year, psychological testing put the 7-year-old Nathan’s cognitive and speech levels at that of a 4-year-old, his mother said.
Nathan also was born with clubfoot, a birth defect causing his left foot to be turned in with the toes pointing up. He’s had his Achilles tendon cut twice but still wears braces on the lower portion of his leg during the day to keep him from walking on his toes.
The braces come off, however, when he’s at the Washington Community YMCA for his afternoon swimming lesson. Mike Miller, a part-time Systems Unlimited councilor, picks Nathan up from school and is with him in the water during the lesson.
Nathan has a back float strapped around his midsection and orange swim trunks with a blue stripe down the sides. It’s a swimming lesson, but it isn’t focused on strokes or style. Instead, Nathan spends most of his time jumping over and over from a diving starting platform.
Before each jump, Nathan does a little showing off. With Miller’s encouragement, he “shows off his muscles” flexing his arms up into the air. Later in the lesson, he does some hip shaking dance moves before splashing into the water.
After Nathan arrived home from swimming, the entire family sat down for dinner together before going outside to play. All three boys spend time on the swing set on the backyard, asking Mom, Dad and each other to keep pushing. The twins ask for “underdog,” when they get pushed high enough to lean their head back while swinging so they are almost upside down.
“You’re making me nervous,” Michelle McCarthy said of Nathan’s increasing daredevil streak.
Other worries come out later, as the boys race their Big Wheels. Mom and Dad have to tell the boys exactly where to stop, even drawing a chalk line, so they don’t ride all the way into the street.
“That’s my biggest fear. He has no concept of danger at all,” Michelle McCarthy said. That’s especially true with people, because he’ll go up to people and hug them, even though he doesn’t know them.
“He’s just naïve,” she said.
In other ways, however, Nathan has surprised them in all he can do, she said.
Since his Down syndrome is very mild, his mother said she has a good feeling about him holding a job and living independently or in supported living away from his family. According to a 2002 population study, the average life expectancy for a person with Down syndrome is 49, almost double the life expectancy in 1982 of 25 years.
“We can’t restrict his future just based on what we thought,” she said.
Because of their experiences with Nathan, Troy McCarthy has become chairman of the Iowa Council for Early ACCESS and a member of the National Down Syndrome Congress board. The couple also helped found the Hawkeye Area Down Syndrome Association when the twins were 6 months old.
“I know I look at the world differently because of Nathan,” Troy McCarthy said.
“As much more work as it is, it’s 10 times more rewarding,” he said. “All of his milestones mean more because they don’t come naturally.
“When he walked, I cried.”
I love this! And it is all so true. I cry everytime Chase reaches a new milestone. Thank you for sharing this.
Rose Chases mom
what a great article; thanks for sharing!