I am raising two very different children. Other than a deep love for each other, I don't think they have anything in common.
Monkey bear had her preschool family celebration the other day. The kids filed in and stood with their toes on a line and sang a song... at least that was the intention.
Monkey bear froze as soon as she walked into the room and had to be led to the line by a teacher. She did manage to do the hand signs but that was it. There was a lot of nose/eye/mouth rubbing and when the hand wasn't enough, she proceeded to lift her dress and wipe her face with that. Monkey bear did warn me ahead of time that she wasn't going to sing anything.
Meanwhile, my buddy walked from person to person like the mayor of Munchkinville. He smiled and waved at anyone who would look at him. My buddy loves the attention - looking each person in the eye then smiling that award winning smile. Of course, he took a break now and then to try and run out the door or lick the floor - it is hard to resist licking a shiny surface.
One of the most fun parts of parenthood is finding out who your children will turn out to be.
December 23, 2010
December 17, 2010
blindsided
We were sitting down to a relaxing meal when I was blindsided. By relaxing meal, I mean that my buddy had completely covered the hand I use to hold his plate in food and had moved on to stuffing peas down his shirt. Then out of nowhere, monkey bear says, "Will my buddy be a Daddy when he grows up?"
After I swallowed the lump in my throat the conversation continued:
"No, he won't be a Daddy"
"What will he be?"
"Just a grown up."
"Why won't he be a Daddy?"
"Because he has Down syndrome he can't have kids."
"Oh, so he'll be a Buddy Walk guy."
"Uh sure. And he will be an uncle to your kids."
"Can I call him Uncle Phil?"
"You could, but his name isn't Phil."
It's funny how things you don't think of often come up in the most unexpected ways. I hate having to say it out loud and put it so plain to monkey bear, but I don't want to lie to her. I wouldn't want her blindsided by the truth some day.
After I swallowed the lump in my throat the conversation continued:
"No, he won't be a Daddy"
"What will he be?"
"Just a grown up."
"Why won't he be a Daddy?"
"Because he has Down syndrome he can't have kids."
"Oh, so he'll be a Buddy Walk guy."
"Uh sure. And he will be an uncle to your kids."
"Can I call him Uncle Phil?"
"You could, but his name isn't Phil."
It's funny how things you don't think of often come up in the most unexpected ways. I hate having to say it out loud and put it so plain to monkey bear, but I don't want to lie to her. I wouldn't want her blindsided by the truth some day.
December 12, 2010
the r-word
After you are part of the Down syndrome community for a certain amount of time, you learn how everyone feels about the r-word. You also come to realize how different it feels to hear the word after Ds is a part of your life. You are also, inevitably, faced with how you will react when you hear someone use the r-word. The other day I failed miserably.
I was in the grocery store with monkey bear and my buddy. My buddy had spent the entire time throwing any item he could get his hands on out of the cart. I alternated between picking food up off the ground and holding his arms still while he screamed at me. We had finally made it to the check-out line.
I was unloading groceries with my back to my buddy. He was in arms reach of the 5 foot tall Andy's candies cardboard display. My buddy took the whole display down scattering boxes of Andy's candies every which way. I was at the end of my rope.
The teenage cashier was ringing our food up when her friend came over and was making silly noises. The cashier, under her breath, laughs and says, "You are so retarded." I stood there paralyzed and had a very long discussion with myself in my head.
For those of you who don't know me personally, I will tell you that speaking my mind is not something I do easily. I often find myself saying something in my head over and over and never being able to get it out.
So there I was considering just what I would say to her, wondering if she knew what Down syndrome was, feeling my face flush just thinking of the confrontation. Before I knew it, the moment had passed and I said nothing. I wonder if the situation were to happen again tomorrow if I would react any differently.
I was in the grocery store with monkey bear and my buddy. My buddy had spent the entire time throwing any item he could get his hands on out of the cart. I alternated between picking food up off the ground and holding his arms still while he screamed at me. We had finally made it to the check-out line.
I was unloading groceries with my back to my buddy. He was in arms reach of the 5 foot tall Andy's candies cardboard display. My buddy took the whole display down scattering boxes of Andy's candies every which way. I was at the end of my rope.
The teenage cashier was ringing our food up when her friend came over and was making silly noises. The cashier, under her breath, laughs and says, "You are so retarded." I stood there paralyzed and had a very long discussion with myself in my head.
For those of you who don't know me personally, I will tell you that speaking my mind is not something I do easily. I often find myself saying something in my head over and over and never being able to get it out.
So there I was considering just what I would say to her, wondering if she knew what Down syndrome was, feeling my face flush just thinking of the confrontation. Before I knew it, the moment had passed and I said nothing. I wonder if the situation were to happen again tomorrow if I would react any differently.
November 29, 2010
rewards
You know it's time to get away when your 3 year old doesn't know what a 'babysitter' is. So off I go to an adult matinee for a break from the kids and some girl time with my BFF. (And, no, monkey bear still doesn't know what a babysitter is because she was home with Daddy.)
Sitting behind us were two women. Once the previews began, one of them started making comments way too loud. After a few minutes it became clear that she has some sort of intellectual disability and was there with her mom. As the movie begins - that would be the R movie with a lot of adult content - I get more and more uncomfortable hearing the questions from the daughter. You can tell the mom had no idea what the movie was about and is trying to figure out what to do. At one point the daughter said, "I'm 20 years old, I am old enough to see this."
After about 10 minutes the mom talks the daughter into leaving. It's funny how you go somewhere to "get away" and there is always something to bring you back home again. Lately, I feel like I've been only getting reminders of the negative side of Down syndrome. Stories about behavioral issues in school, kids wandering off, and reminders that even as a 20 year old adult, there are still concerns.
Today that changed. I got a call from my cousin who has a friend that just had a baby with Down syndrome. Her friend is deep in the grief stage. I can remember how that feels. But I am also privileged with loving a two year old with Down syndrome. The fear and grief is gone. It's replaced with a love that is beyond what words can describe. As cliche as it sounds, there really is something magical in my buddy that wouldn't be there without that extra chromosome.
I am thankful that Down syndrome has touched my life. I will never be the same and anyone who is open to love my buddy will be changed by him. Monkey bear will be a better person. The rewards greatly outweigh the cost.
Sitting behind us were two women. Once the previews began, one of them started making comments way too loud. After a few minutes it became clear that she has some sort of intellectual disability and was there with her mom. As the movie begins - that would be the R movie with a lot of adult content - I get more and more uncomfortable hearing the questions from the daughter. You can tell the mom had no idea what the movie was about and is trying to figure out what to do. At one point the daughter said, "I'm 20 years old, I am old enough to see this."
After about 10 minutes the mom talks the daughter into leaving. It's funny how you go somewhere to "get away" and there is always something to bring you back home again. Lately, I feel like I've been only getting reminders of the negative side of Down syndrome. Stories about behavioral issues in school, kids wandering off, and reminders that even as a 20 year old adult, there are still concerns.
Today that changed. I got a call from my cousin who has a friend that just had a baby with Down syndrome. Her friend is deep in the grief stage. I can remember how that feels. But I am also privileged with loving a two year old with Down syndrome. The fear and grief is gone. It's replaced with a love that is beyond what words can describe. As cliche as it sounds, there really is something magical in my buddy that wouldn't be there without that extra chromosome.
I am thankful that Down syndrome has touched my life. I will never be the same and anyone who is open to love my buddy will be changed by him. Monkey bear will be a better person. The rewards greatly outweigh the cost.
November 14, 2010
fear
Monkey bear has never been a particularly outgoing child. As an infant, she would cry if a stranger got to close to her. She refused to talk in front of anyone else but us for a good 10 months. As soon as the video camera comes out, she clams right up. When we walk through the mall and are accosted by the baby talent scouts, I just laugh picturing her standing silently in front of the camera refusing to perform.
But lately, true fear has been rearing its ugly head. Monkey bear is mostly scared of dogs and the dark. Today a new fear showed up and surprised me. We were sauntering through the mall just the two of us. Monkey bear earned enough stickers on her chart for going to bed without crying and we were out to get her a special something. She decided she really wanted tights and a fancy dress (not my child).
There we were, tights purchased and searching for a dress to match (not an easy goal because the tights are covered with rainbow colored hearts and peace signs). While admiring the huge Christmas tree and excited for a ride down the escalator - a treat without my buddy and the stroller around - we round the corner and spy Santa Clause.
As we descend, monkey bear becomes more and more frightened. She has a death grip on my hand and is beginning to climb up my legs. Once we are out of sight of Santa, monkey bear says she just wants to go home. I convince her to at least buy a dress first. She does not want to go and play, she does not want to come back to the mall until Santa is no longer there.
Who is afraid of being in the same mall as Santa?????
We LOVE the mall and use it as a free form of entertainment. Where do these fears come from? I try so hard to be understanding and empathetic.... tell myself if it was a tarantula sitting in that fuzzy green and red chair, I might not want to go to the mall either. But there is a part of me that just wants to tell her to buck up and be brave. I suppose we are in for some Santa desensitization.
But lately, true fear has been rearing its ugly head. Monkey bear is mostly scared of dogs and the dark. Today a new fear showed up and surprised me. We were sauntering through the mall just the two of us. Monkey bear earned enough stickers on her chart for going to bed without crying and we were out to get her a special something. She decided she really wanted tights and a fancy dress (not my child).
There we were, tights purchased and searching for a dress to match (not an easy goal because the tights are covered with rainbow colored hearts and peace signs). While admiring the huge Christmas tree and excited for a ride down the escalator - a treat without my buddy and the stroller around - we round the corner and spy Santa Clause.
As we descend, monkey bear becomes more and more frightened. She has a death grip on my hand and is beginning to climb up my legs. Once we are out of sight of Santa, monkey bear says she just wants to go home. I convince her to at least buy a dress first. She does not want to go and play, she does not want to come back to the mall until Santa is no longer there.
Who is afraid of being in the same mall as Santa?????
We LOVE the mall and use it as a free form of entertainment. Where do these fears come from? I try so hard to be understanding and empathetic.... tell myself if it was a tarantula sitting in that fuzzy green and red chair, I might not want to go to the mall either. But there is a part of me that just wants to tell her to buck up and be brave. I suppose we are in for some Santa desensitization.
November 10, 2010
baby steps
After more than a year and countless dollars spent on sippy cups that didn't fit the bill, we have found a cup my buddy can use. So the cup was designed for babies 6 months old. At least he's not walking around with a bottle sticking out of his mouth. The cup also has spouts designed for babies 9 months old. Baby steps. Here we come!!
I did learn something about my buddy and how he drinks. He still swallows with his tongue out - much like an infant who is latched or drinking out of a bottle. I tried to drink with my tongue out ... it's not all that easy. So I can empathize with how difficult it will be for him to learn.
I was reminiscing the other night about when my buddy was little. I would try so hard to get him to laugh. I'd pull out all the stops and he would stare at me like I was insane. Now he thinks everything is so funny. It's such an amazing stage. I make a face, add a noise, and he is hysterical. His whole face lights up without and trace of self consciousness.
My buddy has also brought it upon himself to be the ambassador of happiness. Wherever we are, he catches the attention of any adult he can, says "Iiiiiiiiiii", and waves with a huge smile on his face. No one can resist. There is not a single person we have encountered that doesn't smile back and give a hearty, "Hi!" usually followed up with a, "He is so cute!".
Why yes he is.
I did learn something about my buddy and how he drinks. He still swallows with his tongue out - much like an infant who is latched or drinking out of a bottle. I tried to drink with my tongue out ... it's not all that easy. So I can empathize with how difficult it will be for him to learn.
I was reminiscing the other night about when my buddy was little. I would try so hard to get him to laugh. I'd pull out all the stops and he would stare at me like I was insane. Now he thinks everything is so funny. It's such an amazing stage. I make a face, add a noise, and he is hysterical. His whole face lights up without and trace of self consciousness.
My buddy has also brought it upon himself to be the ambassador of happiness. Wherever we are, he catches the attention of any adult he can, says "Iiiiiiiiiii", and waves with a huge smile on his face. No one can resist. There is not a single person we have encountered that doesn't smile back and give a hearty, "Hi!" usually followed up with a, "He is so cute!".
Why yes he is.
November 6, 2010
decisions
I have never been very good at making a decision. Especially those that will effect others. I am relieved that monkey bear chooses her own clothes - even if she makes quite a fashion statement. I even let her dress my buddy just so there is one less decision to be made. Children come with countless daily choices. What should I feed them, do they need a coat, should we skip nap today, are they getting sick... the list goes on and on.
When faced with a major life choice, I am stuck with fear of choosing wrong. Which is funny because I think that most choices can work out in the end. It just takes you down a different path, not necessarily a bad path. I fear disappointing others and forcing the ones I love to join me along that path even though they might have chosen to go a different way.
I am still gathering information in hopes that the light will suddenly appear and trying my hardest to listen to that voice inside of me.
When faced with a major life choice, I am stuck with fear of choosing wrong. Which is funny because I think that most choices can work out in the end. It just takes you down a different path, not necessarily a bad path. I fear disappointing others and forcing the ones I love to join me along that path even though they might have chosen to go a different way.
I am still gathering information in hopes that the light will suddenly appear and trying my hardest to listen to that voice inside of me.
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