Monday, July 29, 2013
Gio's situation is a little more complicated than that even. He has Mosaicism. We don't even know where he has the extra chromosome, that alone would take months to find out because they would have to test each and every part of him. Which could mean endless blood tests, too many needles and pokes to even consider it being worth it. He only has 22% so to me it's better for him to avoid this "cure." The research has only proven to help IQ and certain health problems. It might help prevent early Leukemia and early Alzheimer's. It might help with the thyroid problems and heart problems and hearing and vision problems. The heart defects are more likely not as easily repaired with a silenced chromosome, as well as the physical characteristics. My son so far hasn't had anything major. The removal of his tonsils and adenoids has helped his weight gain in such an amazing way. Hes getting a little to heavy to carry only because I'm use to him being small. This cure wouldn't help Gio talk any sooner it doesn't improve these delays. It wouldn't help the discreet physical characteristics disappear. His muscle tone wouldn't magically improve over night and the bones on his feet wont miraculously go into place. He learns everything so quickly and is great at imitating. Yes, he might not be where a "normal" 2 almost 3 year old is at, but he is not dumb. I don't see him having a problem where his IQ is concerned. It really irritates me that people assume just because he has DS he is dumb and they assume that because he is so smart he can't possibly have DS. The DS doesn't define a child or even say anything about who they will become. The parents and people around them define that and decide whether it's about the child or the DS. My son is an amazing person so sweet and funny, I'm sure with or without Mosaicism he would be exactly who he is. It is merely a medical term. The research found is great in the sense that there will be a lower percentage rate of women who choose abortion after learning their child may have a disability. It eventually may help someone who is having a lot of health problems as in heart surgeries and blood transfusions from the early Leukemia. This may lead to something great, but for now I will cherish my son for exactly who he is, and if I were to have another child and they have full DS I will love them just as much, not because of the DS or whatever disability they may have, but because they are apart of ME.
Fun Fact I learned!
You guys can google this if you'd like, or don't believe me. While reading about all this "cure" research I found out that the extra 21 chromosome has actually been proven, in some studies, to protect the body from many cancers. A person with the extra chromosome has less than a ten percent chance (approximately) in getting cancer! It is rare for a person with Down Syndrome to get cancer. I'm not exactly sure how it works, but it has been studied that the extra chromosome acts as a protectant and it has something to do with the metabolism it creates or something like that, I'm not a doctor I couldn't understand all the terms, but I want to look into it and I will update this (:
Saturday, July 13, 2013
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Friday, July 12, 2013
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace
-author unknown (if anyone knows the author let me know!)
Wednesday, July 10, 2013
The first time he met my son it was at a work dinner for a couple employees that were going away. I still hadn't known about my son's condition, but it was obvious my son was delayed. He didn't talk (still doesn't) and he scribbled and threw things like a baby. He was already two and my coworker who has nieces and nephews of around the same age asked why he didn't talk, why he made his lips the way he did, why he didn't really pay attention. I had been use to these kinds of questions because they were questions I asked myself, but I brushed it off and I told him staight up that my son was slower and it happens. Obviously my tone was a little more on the rude side, but I didn't have answers and that frustrated me more than the questions.
When I got my diagnosis, I was at work and only my boss knew about it, but he hinted to the other members of our team that I was having medical issues with my son and to give me some space. Of course eventually they asked if he was ok and if there was anything they could do. I think they imagined much worse, but I finally just told them my son had Down Syndrome, I felt it easier than explaining the percentage and wanted to avoid the how and why questions. For the most part they have been very considerate and whenever my son comes around they play with him and give him suckers. My coworker who is a teller with me is the one who is more outgoing, I guess you can say, with the comments he makes and questions he asks.
The most recent conversation we've had started when a customer of ours came in with his daughter. He was an older gentleman, probably in his late 40's or early 50's, and he told us his daughter was 6. My coworker laughed and joked on how she could be his granddaughter, something I'm sure he's heard a lot before because he just smirked and tried to hurry with the transaction. After the customer left, my coworker said, "I wonder why that little girl wasn't born with Down Syndrome, because that guy was pretty old so his wife must've been older too when they had her." I was kind of stunned by his comment. I asked him why he would wonder that and he said because he's heard that the risk of a child being born with Down Syndrome is higher for older women. I told him my mom had my sister in her late 30's and my sister was fine. He said either way he wouldn't want to take that risk. I asked what risk would he be taking. He said he wouldn't want his wife to get pregnant at an older age because he wouldn't be able to handle a child who would never be able to take care of themselves. He wouldn't want a child with Down Syndrome because it would be too much work and it's like having a child for the rest of your life, according to him. I told him it doesn't matter what age you are if you're meant to have a child with a disability it will happen. I told him I was 19 when I had my son and according to tests I had almost no chance of having a child with a disability, which I did. He started going on about how either way he wouldn't want that on his shoulders. I was just shocked at how dumb he is on the subject. How much ignorance a person could expose in less than 15 minutes. I'm sure he is not alone in his theories and it's sad to think people are this naive about myths. I know I wasn't fully educated on raising a child with a disability, but I also wasn't so against it. I wasn't always concerned about having a child who would be a little extra work. I was always willing to accept my child with a disability, which is what I had told my parents when I took that test when I was pregnant. Yes, it was a relief at the time that I had gotten a slim chance, but even now it doesn't change what I would do for my son. It's actually kind of funny to hear some of the things people, like my coworker, have to say. Sometimes it'll hurt my feelings and I'll be rude about people's comments, but I'm starting to just let it go. It's easier to sit back and smile because at the end of the day, my son is happy with what he's got.
Wednesday, July 3, 2013
Monday, July 1, 2013
First off, I've noticed a lot of people say it "Down's Syndrome," just like I use to too. It actually isn't "Down's" it's just Down Syndrome. I'm not exactly sure where the other way of spelling it started.
Most people think that Down Syndrome is a rare disorder all together, but it isn't. An estimated 1 in every 700 babies are born with it. Around 350,000 people in the US alone have Down Syndrome right now. The only thing with Gio is the kind of Down Syndrome he has is rare, but Down Syndrome in general isn't.
Common thought is that only older women have children with Down Syndrome. Although your chances increase with age, it is more common among younger moms to have a child with Down Syndrome. The average age of mothers who have children with Down Syndrome is 28. I think that's why a lot of people think it's weird that Gio has Down Syndrome. I had him at 19, which caused a lot of skeptical comments.
Down Syndrome is not "curable." I think this is actually a little funny. Down Syndrome is not a disease, it isn't contagious, and you can't take medicine for it to go away. It is a genetic disorder which makes your body act a little different. There are medical conditions that are caused by it, which there are treatements for, but it alone is not a disease.
When you hear "Down Syndrome" you automatically think of a person with severe mental disabilities or mental retardation. You think of a person with a certain facial structure, and honestly you think of a person who talks funny and is dumb. This is not true at all. The assumption is that, because of the disability, people with Down Syndrome can only learn so much, but they can learn as much as you teach them. Some things may take longer, but they can learn it. They can hold jobs and they can be in "regular" classrooms. This is what I think scared our families the most about Gio having Down Syndrome. It sounds rude, but they thought it was a total lie because Gio isn't dumb. Neither are the majority of people with Down Syndrome. A lot of "normal" kids are not very smart either.
One of the questions I have heard is if Gio will ever marry. His dad even commented on how now I'll have Gio with me forever. Every mom wishes their kids don't grow up, but it isn't really what we want. We want to know we raised them well enough to be on their own and make a life for themselves. People with Down Syndrome get married and have children, this will especially apply to Gio since his diagnosis isn't severe, but even if it was he would still be able to make his own life.
I've kept hearing people say, "Well atleast that means he'll always be happy." WRONG. Now, I'm not saying that Gio isn't a happy child, he is as long as he is in his comfort zone. It sounds weird or maybe funny, but that's how it is. I finally got to be at a family party past 10 p.m. and it was all because I brought his Looney Tunes movie with us. It was easier to put it on for him to because we were at his grandma's house too (:. If we would have been at any other house he would have wanted me to stay there and watch it with him. Usually around 9 or 10 p.m. he has to be watching his movie. He throws huge fits when people try to hold him. He doesn't like being played with at certain times. He hates being in crowded places, besides the stores, I think it's because we are moving around, but even then we can't stay for long. He hates when I sit him down to eat. He doesn't like wearing new shoes for the first time. He has an attitude, and is a huge momma's boy. He's very sensitive too. So if Gio, who only has 22% Down Syndrome has a huge range of emotions it's safe to say anyone with Down Syndrome feels everything, not just happiness. It's just a much more simple lifestyle. We could learn from it. They don't care about brands or expensive things. They like what they like and that's all they need to be happy. Gio loves Looney Tunes, for example. A three hour long movie with episodes of all the different Looney Tunes characters makes Gio's day.