I was watching a show about giving your Kindergartener a heads up so they could go further in life and be more of a leader. I have no way of knowing what kind of a parent I would be if Down syndrome never entered my life, but I have learned many life lessons from my buddy. One important lesson is to celebrate what your child can do - without trying to compare them to others. I think I put way less pressure on my kids to be THE best and work on being THEIR best than I would have otherwise.
I also learned that parents of children with Down syndrome have a lower divorce rate. My personal theory is it's hard to forget about loving each other when you see such displays of love from your child. My buddy will go up to random children in Target, give them a hug and kiss and then just walk off.
Having a child with special needs is so full of yin and yang. Some days I struggle just wanting life to be easy for my buddy. Wishing the little things didn't have to be so hard. Dreaming of the day when he can tell me what is wrong instead of throwing himself down on the ground. Wondering how old he will be when he is finally potty trained. Then there are the days when he is so funny - even without words. Or the way he looks at me with devotion and never ending love. Oh, and the snuggling that little boy can do. Those days I wouldn't change a thing.
Then I think about monkey bear. I wish she wasn't so shy and would speak to her peers. I wish she wouldn't cling to me and would just run off and play. Is that really any different? I know that peer interaction is a challenge to her and her shyness will be an obstacle she will need to overcome throughout her whole life. I don't really want to change monkey bear. But as a parent, it can be so hard to watch your children struggle.
I guess every child can teach their parents many lessons. I think because my buddy's lessons come at a slower rate and are hammered in on a daily basis, it is easier to hear them.
March 15, 2012
February 21, 2012
different
When you have a baby with Down syndrome, you are automatically welcomed in to this amazing community of people. There is a ton of support and families more than happy to answer any question you may have. As my buddy has grown, I've noticed there are some pretty polarizing topics within the community. I'm still forming my opinions but there are some views I have that I'm sure many others don't agree with.
My buddy is different from other kids. Sure he's just a child learning how to make his way in this world and he does things that every other kid out there does. I've had a hard time putting into words how he is different. I think the only way to describe it is most typical kids have a certain order that they reach each milestone. My buddy reaches milestones haphazardly. He'll reach a physical one right on target while a cognitive milestone will be months to come, for example.
This haphazardness coupled with the huge lack of impulse control can lead to safety issues. My buddy at the age of 3 has to be locked into his room every night. His room only has a mattress on the floor, a dresser bolted to the wall with drawer locks and no knobs, and a few soft toys. My buddy gets locked in there while I shower as well because it's not safe to have him in the rest of the house unsupervised. We have many years ahead of us before he can walk along with me in the grocery store or play in the yard without me right there.
Even though my buddy is different it is OK with me. I don't feel like I need to pretend he is something that he is not. Just like it is OK that monkey bear is super shy and won't talk to her peers. It's all a part of who they are.
I have mixed emotions about inclusion. I love the fact that my buddy is lucky enough to be included at school and given the opportunity to make friends with lots of different people. I just don't think I believe in inclusion at all costs. I wouldn't expect monkey bear to be in Advanced Algebra if she wasn't able to understand the concepts and learn. I would find a math class that was more appropriate for her ability. If my buddy understands Algebra and enjoys it then all the more power to him. But if being in a special ed class that teaches him how to balance a checkbook is more appropriate than so be it. Whatever his ability may be is fine with me.
Let's face it. We all make friends with people who are like us. I don't have friends who are Harvard educated rocket scientists nor do I have friends who are intellectually disabled. I want my buddy to make lifelong friends with anyone that appreciates who he is.
I think the most important thing we can do for all our children is to encourage them to push themselves and be the best they can be while honestly accepting who they are.
My buddy is different from other kids. Sure he's just a child learning how to make his way in this world and he does things that every other kid out there does. I've had a hard time putting into words how he is different. I think the only way to describe it is most typical kids have a certain order that they reach each milestone. My buddy reaches milestones haphazardly. He'll reach a physical one right on target while a cognitive milestone will be months to come, for example.
This haphazardness coupled with the huge lack of impulse control can lead to safety issues. My buddy at the age of 3 has to be locked into his room every night. His room only has a mattress on the floor, a dresser bolted to the wall with drawer locks and no knobs, and a few soft toys. My buddy gets locked in there while I shower as well because it's not safe to have him in the rest of the house unsupervised. We have many years ahead of us before he can walk along with me in the grocery store or play in the yard without me right there.
Even though my buddy is different it is OK with me. I don't feel like I need to pretend he is something that he is not. Just like it is OK that monkey bear is super shy and won't talk to her peers. It's all a part of who they are.
I have mixed emotions about inclusion. I love the fact that my buddy is lucky enough to be included at school and given the opportunity to make friends with lots of different people. I just don't think I believe in inclusion at all costs. I wouldn't expect monkey bear to be in Advanced Algebra if she wasn't able to understand the concepts and learn. I would find a math class that was more appropriate for her ability. If my buddy understands Algebra and enjoys it then all the more power to him. But if being in a special ed class that teaches him how to balance a checkbook is more appropriate than so be it. Whatever his ability may be is fine with me.
Let's face it. We all make friends with people who are like us. I don't have friends who are Harvard educated rocket scientists nor do I have friends who are intellectually disabled. I want my buddy to make lifelong friends with anyone that appreciates who he is.
I think the most important thing we can do for all our children is to encourage them to push themselves and be the best they can be while honestly accepting who they are.
February 1, 2012
food wars
My buddy is slowly making me insane. I mean that in the best possible way. Most of the day is filled with hugs and laughter, but each mealtime is filled with drama and stress.
A typical meal lately goes something like this: I put food on the table. My buddy throws himself down in a full blown temper tantrum. Monkey bear and I roll our eyes and eat our meal while he rolls around on the ground.
Since my buddy is in school now I just can't bring myself to send him in with an empty belly. So now come the theatrics... from me. I can remember when monkey bear was about 9 months old and I had to sing Old MacDonald every time I wanted to feed her or she refused to open her mouth.
So the food is on the table. It is food that my buddy approves of yet he is complaining full force. If you just plop him at the table in this state, the food is guaranteed to fly across the room. So Mommy heads over to iTunes to put on the one song that will stop the crying: Three Little Birds by Bob Marley. (Or Bobby Marley if your name is monkey bear) If it is a mild meltdown, then the song alone may be good enough. If we are in major meltdown mode you must pick up the flailing 35 pound preschooler and dance about the room first.
The smile he gives is almost worth the strain on my back and pregnant belly. The next move is either straight to his chair. Or on those really bad days, he sits on my lap. Never put the food within reach until you have completely assessed the mood. One must slyly nudge the milk close and if that goes well then introduce the food.
The thing that gets me is when my buddy finally starts to eat, he is happy and will eat the whole thing. I am embarrassed that I fall for it every time. But I hate the cracker diet in front of the TV and that seems to be the alternative. I've tried feeding him nothing and then sometime later give him the same food. It's never gone well.
I would pay countless dollars for some magic chair that he loved and sat in happily while munching on his healthy food. A girl can dream...
A typical meal lately goes something like this: I put food on the table. My buddy throws himself down in a full blown temper tantrum. Monkey bear and I roll our eyes and eat our meal while he rolls around on the ground.
Since my buddy is in school now I just can't bring myself to send him in with an empty belly. So now come the theatrics... from me. I can remember when monkey bear was about 9 months old and I had to sing Old MacDonald every time I wanted to feed her or she refused to open her mouth.
So the food is on the table. It is food that my buddy approves of yet he is complaining full force. If you just plop him at the table in this state, the food is guaranteed to fly across the room. So Mommy heads over to iTunes to put on the one song that will stop the crying: Three Little Birds by Bob Marley. (Or Bobby Marley if your name is monkey bear) If it is a mild meltdown, then the song alone may be good enough. If we are in major meltdown mode you must pick up the flailing 35 pound preschooler and dance about the room first.
The smile he gives is almost worth the strain on my back and pregnant belly. The next move is either straight to his chair. Or on those really bad days, he sits on my lap. Never put the food within reach until you have completely assessed the mood. One must slyly nudge the milk close and if that goes well then introduce the food.
The thing that gets me is when my buddy finally starts to eat, he is happy and will eat the whole thing. I am embarrassed that I fall for it every time. But I hate the cracker diet in front of the TV and that seems to be the alternative. I've tried feeding him nothing and then sometime later give him the same food. It's never gone well.
I would pay countless dollars for some magic chair that he loved and sat in happily while munching on his healthy food. A girl can dream...
January 18, 2012
play
When we were having our second child, there was a nagging fear that we wouldn't love them as much or the older child wouldn't want them in the family. Then that second child is born with an extra chromosome and the fears are multiplied. I am very happy to report that all our fears were unjustified.
It really helps that my buddy is just so darn loveable. He hugs with all his heart and is genuinely happy to see you walking his way. It also helps that monkey bear is an extraordinary girl. She has compassion and kindness oozing from every pore.
Lately they have become pros at playing together and it just warms my heart. One favorite game is 'baby'. My buddy will lay on monkey bear's lap like he is the baby. Monkey bear will rock him back and forth while singing a lullaby. My buddy will do a fake snore. Then it's feeding time followed with a vigorous pat on the back. My buddy's real good with a loud fake burp.
Another favorite game is hide-and-seek. My buddy will go to the front door, cover his face and count (a series of grunts). He is so good at finding monkey bear and they are both so excited. When it's my buddy's turn to hide, you better find him fast because he doesn't stay hidden for long.
I think the one that makes me laugh the most is what we call 'chase the vacuum'. When I vacuum, I will chase them as I clean pretending that I am about to suck them up. My buddy one day decided to chase us around with their play vacuum. Everyone ends up in hysterics.
Seeing my two favorite people enjoying each others company so much makes me one happy Mama.
It really helps that my buddy is just so darn loveable. He hugs with all his heart and is genuinely happy to see you walking his way. It also helps that monkey bear is an extraordinary girl. She has compassion and kindness oozing from every pore.
Lately they have become pros at playing together and it just warms my heart. One favorite game is 'baby'. My buddy will lay on monkey bear's lap like he is the baby. Monkey bear will rock him back and forth while singing a lullaby. My buddy will do a fake snore. Then it's feeding time followed with a vigorous pat on the back. My buddy's real good with a loud fake burp.
Another favorite game is hide-and-seek. My buddy will go to the front door, cover his face and count (a series of grunts). He is so good at finding monkey bear and they are both so excited. When it's my buddy's turn to hide, you better find him fast because he doesn't stay hidden for long.
I think the one that makes me laugh the most is what we call 'chase the vacuum'. When I vacuum, I will chase them as I clean pretending that I am about to suck them up. My buddy one day decided to chase us around with their play vacuum. Everyone ends up in hysterics.
Seeing my two favorite people enjoying each others company so much makes me one happy Mama.
December 27, 2011
Mrs. Nice Pants
No more Mrs. Nice Pants. My buddy's teachers are about to see the Mama and Papa Bear come out of hibernation. I've been concerned about the amount of speech therapy my buddy was receiving at school. We recently had an informal meeting with his teacher and speech therapist about it and the response we got was - we're still getting to know him.
My mom is in town and she also happens to be a retired Special Education Teacher. We talked about what my buddy was receiving - she couldn't believe how little speech therapy he was getting. I also showed her the IEP (which they never reviewed with me, just stuck into my buddy's backpack one day) and apparently a lot of the goals are poor.
The most frustrating thing as a parent is I don't speak special ed. I am more than willing to fight for what he needs, but I need a professional to help me figure out what he needs. Silly me thought his teacher and team of specialists would be there for me and want to do everything they can to help my buddy succeed.
The good news is my mom still has many friends in the education field and we will have no problem finding an advocate to help us. She will know the proper words to use and what is reasonable to ask for... and fight for if it comes to that.
I really wanted to have a positive experience our first year in school with no battles. I assumed the school would offer everything they could giving my buddy the opportunity he needs to grow and learn. The rose colored glasses are off.
My mom is in town and she also happens to be a retired Special Education Teacher. We talked about what my buddy was receiving - she couldn't believe how little speech therapy he was getting. I also showed her the IEP (which they never reviewed with me, just stuck into my buddy's backpack one day) and apparently a lot of the goals are poor.
The most frustrating thing as a parent is I don't speak special ed. I am more than willing to fight for what he needs, but I need a professional to help me figure out what he needs. Silly me thought his teacher and team of specialists would be there for me and want to do everything they can to help my buddy succeed.
The good news is my mom still has many friends in the education field and we will have no problem finding an advocate to help us. She will know the proper words to use and what is reasonable to ask for... and fight for if it comes to that.
I really wanted to have a positive experience our first year in school with no battles. I assumed the school would offer everything they could giving my buddy the opportunity he needs to grow and learn. The rose colored glasses are off.
December 12, 2011
assessment
My buddy had his first parent teacher conference last week. I have gotten very used to having my buddy assessed by Birth to 3. I never expect him to perform above age range and I am thrilled when he does something on a typical timeline. Birth to 3 concentrated on areas he needed help with in a more clinical way.
I'm not sure if my buddy's preschool teacher is more lenient or she is looking at him in a very different light. There are 30 different Performance Standards in which he has been observed and assessed on. Only 3 of those he performed at a less than 3 year old range. Of course those all dealt with communication. Over half he was rated at a 3 year old level and three areas he performs at a 4 year old level.
Of course my favorite is 'Shows empathy and caring for others.' He has been known to approach crying children and give them a gentle rub on the back - even if he is the reason they are crying.
I don't want to underestimate my buddy and I think he is doing great at school, but the more I think about his progress report, the more I wonder about it. At first I was over the moon. Finally a report that shows how amazing he is.
I don't know a lot about typical behavior of a 3 year old, but I'd be willing to bet most can 'use words to express emotions or feelings' and 'sustains attention to task' and 'uses writing to convey meaning' at a higher level than my buddy. Yet he was assessed at a 3 year old level in all these areas.
I know in the big picture none of these things matter. My buddy will make it through school fine - doing better in some areas than other areas. As long as he continues to show empathy and caring for others, I'm fine with whatever assessments come our way.
I'm not sure if my buddy's preschool teacher is more lenient or she is looking at him in a very different light. There are 30 different Performance Standards in which he has been observed and assessed on. Only 3 of those he performed at a less than 3 year old range. Of course those all dealt with communication. Over half he was rated at a 3 year old level and three areas he performs at a 4 year old level.
Of course my favorite is 'Shows empathy and caring for others.' He has been known to approach crying children and give them a gentle rub on the back - even if he is the reason they are crying.
I don't want to underestimate my buddy and I think he is doing great at school, but the more I think about his progress report, the more I wonder about it. At first I was over the moon. Finally a report that shows how amazing he is.
I don't know a lot about typical behavior of a 3 year old, but I'd be willing to bet most can 'use words to express emotions or feelings' and 'sustains attention to task' and 'uses writing to convey meaning' at a higher level than my buddy. Yet he was assessed at a 3 year old level in all these areas.
I know in the big picture none of these things matter. My buddy will make it through school fine - doing better in some areas than other areas. As long as he continues to show empathy and caring for others, I'm fine with whatever assessments come our way.
November 10, 2011
doctors
My buddy, aside from the extra chromosome, is a healthy little boy. Yet that extra chromosome demands so many different doctors appointments. As a newborn we saw a heart doctor for an echo-cardiogram and a pulminologist to try and figure out why he couldn't kick the oxygen. We were so relieved that my buddy didn't need open heart surgery or a feeding tube or any other surgery for that matter.
He has had about 9 complete blood counts done. Imagine holding down a screaming child with super chubby arms surrounded by at least 3 nurses attempting to find a vein. The easiest one was done when he was born. They took him down to the nursery and when I headed down there to see how he was doing, I almost lost my cool on some nurse. My buddy was lying under the french fry warmer with one of those blue surgical sheets over his stomach with the opening over his belly button. He was lying with both arms and legs out not moving at all. Turns out he liked the heat and fell fast asleep. They opened his belly button and got the blood they needed and closed it up like new.
We've seen an eye doctor 3 times, had 8 hearing tests all followed by appointments with the ENT. My buddy saw a chiropractor for a while to help with misalignment that was causing excessive spit up. All this is on top of the usual pediatrician appointments. For a while there it felt like we were always at some doctor or another. My buddy does tend to get sick often and he usually doesn't kick it until it turns into something major and he hits the antibiotics.
I am heading to the CT Down Syndrome Congress annual convention in a few days. I will learn about even more tests and procedures that are now being recommended. We have been very fortunate that my buddy has no major eating issues or health concerns. I want my buddy to be as healthy as he can be. But some times I just want to whine a big, "I don't wanna," when I think about adding another test to the list.
He has had about 9 complete blood counts done. Imagine holding down a screaming child with super chubby arms surrounded by at least 3 nurses attempting to find a vein. The easiest one was done when he was born. They took him down to the nursery and when I headed down there to see how he was doing, I almost lost my cool on some nurse. My buddy was lying under the french fry warmer with one of those blue surgical sheets over his stomach with the opening over his belly button. He was lying with both arms and legs out not moving at all. Turns out he liked the heat and fell fast asleep. They opened his belly button and got the blood they needed and closed it up like new.
We've seen an eye doctor 3 times, had 8 hearing tests all followed by appointments with the ENT. My buddy saw a chiropractor for a while to help with misalignment that was causing excessive spit up. All this is on top of the usual pediatrician appointments. For a while there it felt like we were always at some doctor or another. My buddy does tend to get sick often and he usually doesn't kick it until it turns into something major and he hits the antibiotics.
I am heading to the CT Down Syndrome Congress annual convention in a few days. I will learn about even more tests and procedures that are now being recommended. We have been very fortunate that my buddy has no major eating issues or health concerns. I want my buddy to be as healthy as he can be. But some times I just want to whine a big, "I don't wanna," when I think about adding another test to the list.
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