Monday, October 21, 2013

October, 2011 Down Syndrome Awareness Month... Day 6


I'm relying on Caleb for today's post. With his permission, I'm going to share a story he wrote about his brother. Caleb was in 6th grade when he wrote this. It was a 'proud mama moment' for sure.

Caleb and Joshua's relationship is interesting. They can be laughing hysterically together one second and tattling on each other the next. Josh learned the technique of tattling FROM Caleb (thank you Caleb!) and perfects it ON Caleb. He doesn't tattle on anyone else, but at least 12 times a day I hear "Moooom, Cayub talkin' bad". Caleb loves to tease him, so he's far from innocent and certainly deserves the tattling, and of course keeps the game going until I get involved (thank you Caleb)!!

But... as annoyed as they get with one another...nobody on earth can make Josh laugh like Caleb!! They play HARD and they laugh HARD! Josh literally SQUEALS in delight and laughs uncontrollably when they play together. It doesn't happen every day, or even every week... but when it does happen... it makes us ALL laugh!

The picture is of the 1st time Caleb held his brother. I love Caleb's face in this picture because it's an early indication of the relationship that would evolve between them. :)

All that said, here are Caleb's own words to describe his brother...

My Brother Josh
When I was five years old, my life changed. Everyone in my family’s lives changed. Josh was born. My brother Josh is the baby of the family and he was born with Down Syndrome. I didn’t know what Down Syndrome was when my parents told me, I just knew he was a cute little baby at the time. I have learned a lot since then, but he’s still pretty cute.

Down Syndrome is a genetic disorder. Down Syndrome is not a sickness, it is just something he was born with. It’s an extra chromosome, which is part of your genes. Down Syndrome makes Josh have to work extra hard in life to accomplish things that a regular person can do easily. Because people with Down Syndrome learn slower, they act younger than other people their age. All people with Down Syndrome have mental retardation. It makes me really mad when I hear someone use the word retard in a bad way because I think of my awesome little brother and he’s not different than anybody else.

People with Down Syndrome look different than other people because they are usually a lot shorter, They have almond shaped eyes and their ears are lower, which I think makes them cuter with mini round heads. I can spot a person with Down Syndrome from a mile away. I like to watch older people with Down Syndrome so I can see what my little brother might be like when he’s older.

People with Down Syndrome have a much harder time with speech they don’t have much muscle tone in their mouths and their tongues are bigger. People that aren’t around Josh very often have a tough time understanding what he is saying, but being around Josh for almost 7 years gives me an advantage. I can usually always understand him. Sometimes he points to what he wants and sometimes he uses sign language. At school, Josh uses pictures to tell people what he wants and needs.

Fifty percent of babies that are born with Down Syndrome have heart defects. Josh was born with one of these heart defects, called a ventricular septal defect… a,k.a. hole in his heart. The hole in his heart made the blood not flow properly to his heart, which made him turn blue and not be able to breathe. He had to be rushed to Boston Children’s Hospital as soon as he was born. When he got back from Boston, he was on oxygen for three months at home before he got really sick again. Josh had to go back to Boston to get open heart surgery. The doctors went in and patched the holes in his heart and today his heart is pretty much like anybody else’s heart.

With Down Syndrome, it’s common to be very, very, very stubborn. If Josh doesn’t want to do something, he is not doing it. This stubbornness helps him in some ways because he won’t give up on anything. He keeps trying and trying until he gets it right. I have heard him say a word over and over again until someone figures it out. He doesn’t get frustrated, he just gets really happy when we understand him. He’s pretty patient with us.

People with Down Syndrome often have more problems with their health than the normal person. When they get sick, it takes them longer to get better. Their immune system is weaker so they can’t fight things off very well. Josh has had pneumonia seven times. He has never been in the hospital for pneumonia but he has had to go to the Emergency Room several times for it. When we have a cold, we have to be careful around Josh because if he gets a cold, it can build and build and build into serious pneumonia. When I was little and he was just a baby, he got pneumonia before he had his heart fixed and got really really sick. He still has scars on his lungs from it.

Josh also has something called hip dysplasia… a.k.a. dislocation of the hip. He can dislocate his hip willingly, anytime he wants to. He has had this since he was two years old and it got so serious that he needed to have an operation to fix it. My mom and dad had to take Josh to Boston again to have his hip operated on. The doctors had to break his hip in three places and then put it back together with three long screws. You should see how long the screws are on the x-ray! Josh had to stay in the hospital for a week and will have to stay in his full body cast for two months or more. He has been a trooper in his cast. I don’t think I would be as tough as him.

Overall, Josh is a pretty happy go lucky kid. He is just happy to be alive. He makes us laugh about one thousand times a day just by being himself. He is determined to do new things, except he hates food, which is kind of weird because normally with Down Syndrome, they like to eat a lot. I’m really glad Josh is part of our family. I don’t know what we would all do without him. Sometimes I wish I could be more like Josh with the things he does because he never gives up and he always has a good attitude.

No comments:

Post a Comment