I am reminded that as I get older the giggles get better and cure more ills.
I am reminded that my struggles are small in the eyes of some and grand in the eyes of others, but they are what they are in my eyes.
I am reminded that great friends are forever. And that great friends can develop even as we get older and span different mediums of communication ;)
I am reminded that great and amazing things await us as we learn and grow as a family and as people.
I am reminded that it's ok to reflect on the same situation and keep learning new lessons.
I am reminded that it's ok to be different and to voice that difference without judgment of others or fear of judgment from others.
I am reminded that it's ok to enjoy a glass of wine. To truly savor that having a glass of wine generally means I'm focusing on me & something I enjoy.
I am reminded that it's ok to be me without guilt that I'm not perfect. Because I am perfect.
I am reminded that special needs doesn't have to mean "special needs". Thank you TUMC.
I am reminded that a simple phone call does wonders for the soul. As does a handwritten letter. Expect to see more of these. :)
I am reminded that you can journey to the brink and make it back to say "I love you" and "I miss you" and mean it sincerely.
2012 had it's fair share of ups & downs, but it was a good year. Chin chin to 2013 being on it's way. I can't wait to see what new and exciting adventures await us.
Monday, December 31, 2012
Thursday, December 27, 2012
Therapeutic brownies? Huh? What?
Yup. Brownies are not only delish, but also serve as therapy for little boys who dig that kind of thing.
Physical and occupational therapy.
Because first you have to get to your work surface
Then you have to stir
Using the pincer to place the cupcake wrappers ever so gently. Check out the skill
Feeding therapy
Yum. Seriously. Why else would you make brownies if not to eat the batter?
Also serves as play therapy because they have to learn to get along and not throw batter at each other. They have take turns putting the cups into the pan and most of all they have to have patience.
Waiting for the big pay out.
Glad Meredith and I finally let Sean into our little brownie making bond.
Sunday, December 23, 2012
Flat Stanley has a stunt double?
Of course he does! How else can he be in 2 (or more) places at once?
After watching the news and seeing how so many people came together to help the people of NYC clean up after Hurricane Sandy, he wanted to go up there to do his part. Our friend Mike who has been working tirelessly with the rest of Dept of Sanitation in NYC to clean up after Hurricane Sandy graciously agreed to host Stanley.
Stanley's stunt double was all for it. He got dressed in his DSNY uniform and went to work.
He was so excited when he got to work and his name was on the board. Right there under Sect 124 next to our friend Mike's.
He went to his locker to drop his stuff off and saw that the rain gear that was ordered for him was just not going to fit well. He made sure to stay dry in other ways.
Everyone was so happy to have an extra set of hands to help out. Except maybe Mike's usual partner. No one likes to be shown up by the new guy.
He did such an amazing job that the chief asked him to do some other jobs.
Being the smallest guy in the garage has its advantages. The office door got locked & no one had the key. Well.... Flat Stanley to the rescue.
He was able to slide under the door & open it. Way to save the day Stanley!!!
After a hard day of work, Stanley was very happy to take a nice hot shower.
Thank you DSNY for being awesome (as usual) and hosting Stanley. We really appreciate it and everything you do.
After watching the news and seeing how so many people came together to help the people of NYC clean up after Hurricane Sandy, he wanted to go up there to do his part. Our friend Mike who has been working tirelessly with the rest of Dept of Sanitation in NYC to clean up after Hurricane Sandy graciously agreed to host Stanley.
Stanley's stunt double was all for it. He got dressed in his DSNY uniform and went to work.
He was so excited when he got to work and his name was on the board. Right there under Sect 124 next to our friend Mike's.
He went to his locker to drop his stuff off and saw that the rain gear that was ordered for him was just not going to fit well. He made sure to stay dry in other ways.
Everyone was so happy to have an extra set of hands to help out. Except maybe Mike's usual partner. No one likes to be shown up by the new guy.
He did such an amazing job that the chief asked him to do some other jobs.
Being the smallest guy in the garage has its advantages. The office door got locked & no one had the key. Well.... Flat Stanley to the rescue.
He was able to slide under the door & open it. Way to save the day Stanley!!!
After a hard day of work, Stanley was very happy to take a nice hot shower.
Thank you DSNY for being awesome (as usual) and hosting Stanley. We really appreciate it and everything you do.
Thursday, December 20, 2012
We're off from school. Know what that means?
So of course in an effort to prove to myself that I could be a preschool teacher I set about the task of teaching Sean how to use a scissor. I put my most kid friendly CD on to set the mood. Gathered both kids and their various scissors (spring loaded for Sean and regular safety scissors for lady M) set everyone up at the table and set to work.
After I got poked in the eye, I realized I am not Jessica (Meredith's most fabulous teacher from NYC) and I needed to start smaller.
First teach him to squeeze his fingers together fist style thumb up. Then teach him to squeeze his fingers together in the scissor. Then hold the paper in one hand, while squeezing his fingers in the scissor onto the paper. Then while holding the paper yourself.
One thing about teaching Sean how to do things is that I take nothing for granted. That's not true. I do take for granted that he seems to learn quickly, but something like scissors brings me right back. LOL
Each activity/task is a process. And when you have a kid whose only true learning issue is coordination, you figure out real quick that you have to teach every single detail in order for him to put it together. Who knew cutting a piece of paper had so many steps?
I'm proud if him. He really caught on. Now with practice he can have some more control. No one wants to lose an eye to spring loaded safety scissors. That's just not a cool story.
After I got poked in the eye, I realized I am not Jessica (Meredith's most fabulous teacher from NYC) and I needed to start smaller.
First teach him to squeeze his fingers together fist style thumb up. Then teach him to squeeze his fingers together in the scissor. Then hold the paper in one hand, while squeezing his fingers in the scissor onto the paper. Then while holding the paper yourself.
One thing about teaching Sean how to do things is that I take nothing for granted. That's not true. I do take for granted that he seems to learn quickly, but something like scissors brings me right back. LOL
Each activity/task is a process. And when you have a kid whose only true learning issue is coordination, you figure out real quick that you have to teach every single detail in order for him to put it together. Who knew cutting a piece of paper had so many steps?
I'm proud if him. He really caught on. Now with practice he can have some more control. No one wants to lose an eye to spring loaded safety scissors. That's just not a cool story.
Tuesday, December 18, 2012
Maybe I just hate labels
I do hate labels. I understand them, but I don't like them. Most labels conjure up negative images in one's mind. Some labels have spectrums. Spectrums force people to ask questions. It forces people to look beyond the labels.
Down syndrome does not have a spectrum. Down syndrome is what it is. It is 3 copies of the 21st chromosome. You either have Down syndrome or you don't. There are variations; mosaic down syndrome (where some cells are affected, but others are not), translocation down syndrome (where part of the chromosome is attached to another chromosome, but there are still 3 copies) and regular, plain ole down syndrome (all cells contain 3 copies of the 21st chromosome and they're where they're supposed to be on the karotype).
This is not to say that some people aren't affected more or less by their extra chromosome. It's really luck of the draw. But there isn't a little bit "downsy". There isn't a spectrum for learning or understanding (yet). There's nothing to force the average person engaged in an average conversation to look passed Down syndrome. To look passed Sean's slanted eyes. To look passed his short fingers and lack of true conversation.
My experience has been that when the average person, who has no experience with Down syndrome, hears "Down syndrome" negative connotations will usually enter their mind. When I have brought it up, some people look surprised that Sean is so "normal". Some give a look of pity.
These negative images certainly entered my mind when I first learned Sean had Down syndrome. It's the reason I thought I'd be raising a 50 year old with the mindset of a 5 year old well into my later years.
I've mentioned in the past that I had an abnormal psych class in which the professor forced the class to look beyond psychiatric labels to find the true meaning of the illness. Why did he hate labels so much!? I mean geez... they wrap everything up into a nice little bow right? Well... yes & no. They wrap EVERYTHING up into a nice little bow and usually the things that shine through are the negatives.
What does this have to do with the price of apples in China?
My friend and fellow blogging mom to a wonderful little boy with Down syndrome, Maureen (check out her blog here), posed a question on a social network. She asked the local Down syndrome community whether it had ever played the "Down syndrome card".
I put it out there that people playing the "Down syndrome card" bothers me. I don't agree with it, but I don't judge. If it works for other families that's fine.
What I don't like about it is that I feel like it takes away from forcing people to see passed the Down syndrome. "Oh... little Johnny is acting up. Again." "Oh don't worry about it honey, he's got Down syndrome." It allows people to see Down syndrome as a negative, in my opinion. In much the same way most feel the word "retard" should be eradicated because of it's negative connotations. It allows people to be dismissive. It's insulting.
I'm guilty of it as well. When we lived in NYC there was a family living on our block whose son has autism. After the major 27" blizzard a couple of years ago, he & his older sister went out to the corner of our street and started shoveling snow. At the time Rob & I thought they were nuts. Who in the right mind goes out to shovel snow in the street in the freezing cold when they don't have to? We thought his older sister was out there placating him and making sure he didn't get hurt. I dismissed what may have been his motives because he has autism.
It never occurred to me that maybe he was just helping out his neighbors and the sanitation department by doing his part. I have obviously re-examined that and many other situations because I have been forced to.
I fight each & every single day for Sean to be seen as a regular ordinary kid with upwardly slanted eyes. I struggle with the notion that Sean's bad behavior in a restaurant could be pitied or dismissed simply because he has Down syndrome. Especially when his older typical sister is throwing the same fit with a more demure style.
There are other things that some children with Down syndrome are affected by. Some children with Down syndrome also have Autism. Some have sensory issues with no Autism diagnosis, hypotonia, etc. So I get that some people (child or otherwise) need assistance because of those things. My issue is the label. Down syndrome cannot & should not be used as an all encompassing label.
In my opinion, using the all encompassing label of Down syndrome allows people to dismiss Sean for being Sean. It allows people to assume that just because your child has sensory issues, all children with Down syndrome have it. And therefore Sean must have sensory issues as well. It allows people to assume that because your child has low muscle tone, all people with Down syndrome, including Sean, too. You get the idea.
I don't like the constant uphill battle I seem to be fighting to get people to understand that just like everything else, there are differences between people with Down syndrome. Many differences. To force people to see that just like typical people are not all alike or one nationality of people are not all alike, people with Down syndrome are not all alike.
My other issue with playing the "Down syndrome card" is that it's generally used in negative situations. Why can't a child with Down syndrome score a 100% on a spelling test and their parents say, "yeah. it's because he has Down syndrome?" Why can't a child be "so well behaved" and the parents say "Yeah it's because he has Down syndrome?"
Why can't a child be coloring on the booth at Denny's (shooting my son a total side eye) and people just be happy with "yeah he's 2. What are ya gonna do"? I swear to you no less than 3 times this year has someone dismissed Sean by saying "oh it's ok. I have a special needs (insert family member here). I understand." Um.... no he's 2. He colors on walls and booths and basically does the complete opposite of whatever I tell him to do. Hey come to think of it my typically developing 4 year old does the exact same thing. Just with more gusto and passion. OY!
I just want my son to be seen as a 2 year old. Not a 2 year old with Down syndrome.
Down syndrome does not have a spectrum. Down syndrome is what it is. It is 3 copies of the 21st chromosome. You either have Down syndrome or you don't. There are variations; mosaic down syndrome (where some cells are affected, but others are not), translocation down syndrome (where part of the chromosome is attached to another chromosome, but there are still 3 copies) and regular, plain ole down syndrome (all cells contain 3 copies of the 21st chromosome and they're where they're supposed to be on the karotype).
This is not to say that some people aren't affected more or less by their extra chromosome. It's really luck of the draw. But there isn't a little bit "downsy". There isn't a spectrum for learning or understanding (yet). There's nothing to force the average person engaged in an average conversation to look passed Down syndrome. To look passed Sean's slanted eyes. To look passed his short fingers and lack of true conversation.
My experience has been that when the average person, who has no experience with Down syndrome, hears "Down syndrome" negative connotations will usually enter their mind. When I have brought it up, some people look surprised that Sean is so "normal". Some give a look of pity.
These negative images certainly entered my mind when I first learned Sean had Down syndrome. It's the reason I thought I'd be raising a 50 year old with the mindset of a 5 year old well into my later years.
I've mentioned in the past that I had an abnormal psych class in which the professor forced the class to look beyond psychiatric labels to find the true meaning of the illness. Why did he hate labels so much!? I mean geez... they wrap everything up into a nice little bow right? Well... yes & no. They wrap EVERYTHING up into a nice little bow and usually the things that shine through are the negatives.
What does this have to do with the price of apples in China?
My friend and fellow blogging mom to a wonderful little boy with Down syndrome, Maureen (check out her blog here), posed a question on a social network. She asked the local Down syndrome community whether it had ever played the "Down syndrome card".
I put it out there that people playing the "Down syndrome card" bothers me. I don't agree with it, but I don't judge. If it works for other families that's fine.
What I don't like about it is that I feel like it takes away from forcing people to see passed the Down syndrome. "Oh... little Johnny is acting up. Again." "Oh don't worry about it honey, he's got Down syndrome." It allows people to see Down syndrome as a negative, in my opinion. In much the same way most feel the word "retard" should be eradicated because of it's negative connotations. It allows people to be dismissive. It's insulting.
I'm guilty of it as well. When we lived in NYC there was a family living on our block whose son has autism. After the major 27" blizzard a couple of years ago, he & his older sister went out to the corner of our street and started shoveling snow. At the time Rob & I thought they were nuts. Who in the right mind goes out to shovel snow in the street in the freezing cold when they don't have to? We thought his older sister was out there placating him and making sure he didn't get hurt. I dismissed what may have been his motives because he has autism.
It never occurred to me that maybe he was just helping out his neighbors and the sanitation department by doing his part. I have obviously re-examined that and many other situations because I have been forced to.
I fight each & every single day for Sean to be seen as a regular ordinary kid with upwardly slanted eyes. I struggle with the notion that Sean's bad behavior in a restaurant could be pitied or dismissed simply because he has Down syndrome. Especially when his older typical sister is throwing the same fit with a more demure style.
There are other things that some children with Down syndrome are affected by. Some children with Down syndrome also have Autism. Some have sensory issues with no Autism diagnosis, hypotonia, etc. So I get that some people (child or otherwise) need assistance because of those things. My issue is the label. Down syndrome cannot & should not be used as an all encompassing label.
In my opinion, using the all encompassing label of Down syndrome allows people to dismiss Sean for being Sean. It allows people to assume that just because your child has sensory issues, all children with Down syndrome have it. And therefore Sean must have sensory issues as well. It allows people to assume that because your child has low muscle tone, all people with Down syndrome, including Sean, too. You get the idea.
I don't like the constant uphill battle I seem to be fighting to get people to understand that just like everything else, there are differences between people with Down syndrome. Many differences. To force people to see that just like typical people are not all alike or one nationality of people are not all alike, people with Down syndrome are not all alike.
My other issue with playing the "Down syndrome card" is that it's generally used in negative situations. Why can't a child with Down syndrome score a 100% on a spelling test and their parents say, "yeah. it's because he has Down syndrome?" Why can't a child be "so well behaved" and the parents say "Yeah it's because he has Down syndrome?"
Why can't a child be coloring on the booth at Denny's (shooting my son a total side eye) and people just be happy with "yeah he's 2. What are ya gonna do"? I swear to you no less than 3 times this year has someone dismissed Sean by saying "oh it's ok. I have a special needs (insert family member here). I understand." Um.... no he's 2. He colors on walls and booths and basically does the complete opposite of whatever I tell him to do. Hey come to think of it my typically developing 4 year old does the exact same thing. Just with more gusto and passion. OY!
I just want my son to be seen as a 2 year old. Not a 2 year old with Down syndrome.
Monday, December 10, 2012
Look who's back!
Flat Stanley is once again visiting us. Boy have we missed you!
Things got off to a rocky start. Sean being ever curious of new friends, he was eager to get to know Stanley. Unfortunately for Stanley, Sean got a little handsy. Sorry man. I had no idea.
Thankfully for Stanley I stayed at a Holiday Inn Express and was able to magically perform surgery.
Off we went. We hit up Charlotte for an afternoon on the town. I couldn't believe how excited even the city of Charlotte was that Stanley was here. They put out the "Welcome" signs for him. I have to admit. I was a tad jealous. No one put out the signs for us when we moved down here. HUMPF!
We went to the Duke Energy Center to meet Rob where he's been working & getting ready to move to (for work).
Stanley was pretty shocked that such a tall building could be anywhere except places like NYC.
Then he was equally amazed at the enormous Christmas ball.
We were right near the Charlotte Museum of Modern Art and I've been meaning to check it out. So that's what we did. We saw some things that were really cool.
Meredith was less than thrilled.
Saturday night marked the 1st night of Hanukkah. Stanley was so excited that he was able to be here for it.
He was grateful that we got him a little gift. :)
Welcome back Stanley. We're looking forward to exploring our new city with you and going on so many adventures.
Things got off to a rocky start. Sean being ever curious of new friends, he was eager to get to know Stanley. Unfortunately for Stanley, Sean got a little handsy. Sorry man. I had no idea.
Thankfully for Stanley I stayed at a Holiday Inn Express and was able to magically perform surgery.
Off we went. We hit up Charlotte for an afternoon on the town. I couldn't believe how excited even the city of Charlotte was that Stanley was here. They put out the "Welcome" signs for him. I have to admit. I was a tad jealous. No one put out the signs for us when we moved down here. HUMPF!
We went to the Duke Energy Center to meet Rob where he's been working & getting ready to move to (for work).
Stanley was pretty shocked that such a tall building could be anywhere except places like NYC.
Then he was equally amazed at the enormous Christmas ball.
We were right near the Charlotte Museum of Modern Art and I've been meaning to check it out. So that's what we did. We saw some things that were really cool.
Meredith was less than thrilled.
Saturday night marked the 1st night of Hanukkah. Stanley was so excited that he was able to be here for it.
He was grateful that we got him a little gift. :)
Welcome back Stanley. We're looking forward to exploring our new city with you and going on so many adventures.
Monday, December 3, 2012
Thought I was passed "it"
With everything I've had going on lately, I guess I thought I had gotten passed the queasy feeling I used to get when discussing down syndrome and my son. Not that I thought we were passed the fact that he needs some extra help (like a lot of other kids). I guess I thought I was passed the insecurity.
Yesterday I totally proved wrong. When talking about school with a friend, I mentioned something about down syndrome. Someone said "Oh I noticed it right away that he has down syndrome."
I don't know why, but I was totally caught off guard. I'm not sure why. It's not like he doesn't have down syndrome. He does. I think it also had a lot to do with HOW she said it.
I've always wondered what people really see when they look at him. Does he have pronounced physical features of DS? I see him everyday. I also know what I'm looking for. So I see it. Most of the time.
Either way it made me sad for Sean. It brought back all my insecurities. Did she notice right away because he's not doing something? Because he is doing something? How come I'm not doing more for him to "hide" his ds and help him fit in more? how come I even feel like I need to worry about that?
I've been in a total funk over it since yesterday. I've been looking at pictures and videos of friends' kids who are the same age only seeing the things Sean can't do yet or has no interest in doing like the other kids. I thought I was passed that. I thought I was passed the point of comparing because there is no comparison.
I guess I'm either not passed it or it's just that easy to drag me down. Either way I'm not happy about it. I have got to pull myself up and move on. My brain just can't handle any negativity. There's just no room for an all consuming elephant in the room.
Yesterday I totally proved wrong. When talking about school with a friend, I mentioned something about down syndrome. Someone said "Oh I noticed it right away that he has down syndrome."
I don't know why, but I was totally caught off guard. I'm not sure why. It's not like he doesn't have down syndrome. He does. I think it also had a lot to do with HOW she said it.
I've always wondered what people really see when they look at him. Does he have pronounced physical features of DS? I see him everyday. I also know what I'm looking for. So I see it. Most of the time.
Either way it made me sad for Sean. It brought back all my insecurities. Did she notice right away because he's not doing something? Because he is doing something? How come I'm not doing more for him to "hide" his ds and help him fit in more? how come I even feel like I need to worry about that?
I've been in a total funk over it since yesterday. I've been looking at pictures and videos of friends' kids who are the same age only seeing the things Sean can't do yet or has no interest in doing like the other kids. I thought I was passed that. I thought I was passed the point of comparing because there is no comparison.
I guess I'm either not passed it or it's just that easy to drag me down. Either way I'm not happy about it. I have got to pull myself up and move on. My brain just can't handle any negativity. There's just no room for an all consuming elephant in the room.
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