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Life with Special C

I am the mother of a son who is cognitively impaired. This is about my life with him (and his big brother).

Welcome!

This blogging is all new to me. I'm hoping other "special needs" parents might find comfort in knowing they are not alone. Also, I think it is important for me to document my son's accomplishments, struggles, not to mention mine as well.

Monday, March 30, 2015

What makes Special Olympics so special?

     We just returned from the Special Olympics state basketball finals. I am exhausted from our world wind 24 hour flurry of activity. I am also on a high and I'm not sure I will be able to fall asleep tonight.
     I will spare you all of the boring details but instead provide you with, what I hope, will make you want to go to a Special Olympics event or even better yet, volunteer at one. But, then I wonder, "Is it only people that have someone in their life that is special needs that are wowed and humbled by this event?" 
     First, I want to let you know that I will use the term "typical" referring to a kid that does not have disabilities. I like this term better than "normal" because to me, normal IS my kid. I guess typical better describes the majority of kids, the ones that do not have a disability.
     I am going to be selfish and start with me first. We will get it out of the way and focus on what it really is about.
      OK, about ME! The thing that is so special about Special Olympics is that I get to feel like a normal parent with my special kid.  For once I am surrounded by parents who get what I am going thorough. All of the kids have different issues but they all have issues, and every parent gets it. No matter what. No matter what your issue is, they get it because they too have gone through something similar. The best part is, nobody feels the need to talk about it. I never have had a parent ask me anything about C or his disability or what his issues are. We don't talk about the number of doctors that we see or what services he receives in school or where he falls with his typical peers. So if a kid needs to take their medicine, nothing is ever questioned. AND the best part is, nothing is weird about what the others are doing, or not doing. Nobody stares. Nobody gives funny looks. We all just go about business as if we were typical parents, with typical kids. AND. IT. IS. GREAT! Until,  the typical kids come down to breakfast with their soccer team and stare. Hard. (Yes, I notice these things). Ok, but screw them.
   
     So, the Top Ten things about WHAT MAKES SPECIAL OLYMPICS SO SPECIAL?

#10 You get to be a regular parent for once.
    I explained this earlier but it is so nice to just belong with the other parents. 
#9 Your kid is surrounded by kids that are just like him. Well, not just like him but pretty close. The point is, all of these kids have major struggles in life. These are not struggles that will ever go away.
#8 Your kid finally feels like he connects with someone. One of the hardest things when you have a special needs child, is when you have one that is cognitive enough to know he is different. So, when he connects with the other kids, you know you've hit a home run.
#7 Your kid  can finally do things they love to do. Let's face it, playing basketball at the Y or on his school team will. not. last. He will be able to play basketball AND other sports he loves with the Special Olympics for his entire life.
#6 Your kid's confidence soars!
This is a no brainer. Believe it or not, all special needs kids need (and understand) the need to be successful. When they are, well......
#5 Your kid gets the chance to be successful. These kids face daily struggles in their life. It takes a long time for them to be successful at even the basic tasks (such as brushing your teeth or learning how to tie shoes). Special Olympics not only gives them the opportunity to succeed but also to feel GOOD about it!
#4 For once all of the struggles are not part of the day. For once, they are having fun and not getting frustrated or upset.
#3 They feel like typical kids must feel on a daily basis. I'm pretty sure most typical kids feel success regularly. Whether it is on a sport team or academically, I would bet most typical kids feel successful. 
#2 These kids can participate into and through adulthood. It will be something they can carry with them through their whole life and have that one thing that makes them feel good and proud of who they are. 
#1 The kids have the BEST sportsmanship! I have never seen any sports team have stellar sportsmanship like the Special Olympics athletes. Kids from other teams will help someone up if they fall. They will ask, "Are you ok?" They cheer (loudly) for the other team and they have the utmost respect for every player. Sometimes the athletes do get upset and angry (because some of them ARE very intense) but they never take it out on others, especially the other team. I have even witnessed someone from the other team hand over the ball to a player on the opposite team, just so they could make a basket. Now, THAT is something!
     
     So, I don't know if the reason I feel this way is because I have a Special Olympics athlete or is it because I have been to an event and witnessed these things and have just been awed by the whole thing? I guess it doesn't really matter. What matters is that these kids (and adults) who struggle every day, struggle to fit into the "real" world, struggle to learn new tasks, struggle to make friends, struggle with health issues, etc. these kids deserve to be happy and successful and to feel good about themselves. Even if just for a day.
   
OH and P.S. Colin's team won the GOLD medal for their division!




Colin had the biggest cheering section! Aunt Bridget, Uncle Don, Papa, and my cousin Missy and her husband and 4 kids came to cheer Colin on. The kids made signs for him, which brought tears to my eyes! So Sweet!
Posted by Unknown at 7:30 PM No comments:

Wednesday, March 25, 2015

No news?

    No news is good news, I guess.  I haven't had time to write and it is making me sad. I have so many thoughts and ideas popping into my head all day long but no way to jot those idea down and definitely no way to actually sit down and write about them. I will do what I can.
     Things have been stable and calm for at least a month. So, now that I just said that, tomorrow night is going to suck. I haven't totally let my guard down and I don't think I ever will. Colin is only on one behavior med and it seems to be working. I wonder if maybe we weren't over medicating him by having him on (at one point) 3 medications? The heart issue that he was having (you'll have to go back and read up on that if you don't know what I am talking about) seems to have gotten better. He still has the issue, he is just right at the border of it being a problem. It has improved, but it is still an issue. He has a list of 2 pages of medicines that he has to avoid (or the heart issue will become a problem). He is trying really hard to be a good boy, I can tell.
     I am going to leave with a poem that a friend sent me. She reads my blog and she has the poem at work. She thought of me and thought I would connect with it. Boy, did I connect! I think it explains how I feel being Colin's mom. I think if you read it, you too, will understand how I feel about being Colin's mom.

WELCOME TO HOLLAND


by  
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reservedI 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.

Posted by Unknown at 6:54 PM No comments:

Saturday, March 7, 2015

Gold medal winner!

C and his GOLD medal!

     Colin's Special Olympics basketball team won the district championship today. They came in first in their district, got a gold medal and will be going to the STATE finals in two weeks! This basketball obsessed kid is on cloud nine! I know this because he couldn't stop talking about it, he wanted to watch basketball when we got home (to "get better" for states) and he called his grandma on his own. (He never calls anyone and rarely talks on the phone).  He is very proud and so are we!

     I know I've said this before but I have to say it again, if you ever have the opportunity to go to a Special Olympics event, you should. You can't help but smile at these kids (sometimes adults) and pick up on their energy and enthusiasm. You definitely walk away feeling good.

     Colin (still) talks about going to the NBA more than ever now. I LOVE his passion!
Posted by Unknown at 6:01 PM No comments:
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