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.
Wednesday, November 28, 2012
Here's the thing about stress
Disclaimer: I'm going to rant. I'm going to spill it right here. If you're going to be sensitive, claim I'm bashing anyone, boohoo at me or anything else.... don't bother. If you don't like it or don't wanna "hear" it, don't keep reading.
I have been hypothyroid (Hashimoto's) for years. Years. (That's important) I had bloodwork done in NYC and brought it down here to my new dr. He didn't like my TSH numbers saying they were to high and not in the newly recommended 1-2 range. So he increased my Synthroid. He said I should come back for my follow up 6-8 weeks so we can see how I was doing.
Today was that follow up. The day started out like any other. Me barely able to keep my eyes open because I hardly slept the night before. Kids demanding everything under the sun like little gaitling guns firing off their rounds.
The exceptions... instead of snoring, it was the "did I hear something or someone come in the door?" The sound of the heater turning on. The searing pain in my ears that felt like someone shoving a qtip in to hard. Meredith waking up because she'd had a bad dream. Sean waking up WAY to early because he had decided not to nap in favor of falling asleep to early.
I dropped the kids off at school and headed off to my dr's appointment. I waited & then did the triage. Dr walks in and we discuss my ears. They look good. Pain is probably coming from the brewing sinus infection causing congestion. Don't even get me started.
How am I feeling otherwise? "Well doc... my wrists hurt. Which I find odd. And I'm tired, but that's because I haven't been sleeping. And... I'm always cold. Always. I don't know if it's because my thyroid is acting up or if I was just kind of expecting it to be warmer down here compared to NYC."
He feels around.... "Your thyroid does feel full. We'll check all the thyroid hormone levels. Not just the TSH."
But...... lets talk about this fatigue. Oh yes.... Lets. Lets discuss it. PPPppppppppppllllllllllllleeeeeeeeeeeeaaaaaaaasssssssssssssssseeeeeeeeeeee.
He says there are two types of fatigue. Mental and physical. He thinks I told him I was tired in relation to the thyroid. And so to disprove that (or so I assume) he says, "Having a child with special needs is stressful. Very stressful. It's perfectly normal for a woman in your position to feel stressed."
Now here's the thing about having a child with special needs. IT"S NOT STRESSFUL!!!! Sean is a typical 2 year old.
Wanna know what's stressful? A son who can't seem to rid himself of a medication resistant bacteria and doctors who proclaim that "this" antibiotic is going to finally do the trick. Except that their miracle cure has already been tried. They'd have known that if they had bothered to read the notes THEY wrote.
Stressful is spending every waking minute looking at, doing something for, arguing with or any of the other numerous things that can be placed here for my children and then having them end up in my bed that night with their feet touching me. It's not that I don't love my children and don't wanna comfort them. It's just that I'm tired of seeing them. Mommy needs a little down time too.
Stresful is knowing that there are 2 major holiday parties coming up in a few days and I'll probably be taking my kids alone. Stressful is knowing that my incredibly shy daughter will be stuck to my leg and grunting at people who try to say hi while my son tries to take off at full speed through the crowd.
Stressful is having a dog who was just treated at the vet for God knows what and thensome poop in your house on your freshly scrubbed floors and your son discovering it. Oh yeah fun times. Or a dog who hurts his damn foot the day before Thanksgiving. My dogs are high maintenance. Lets leave it at that.
Stresful is not having consistent help or any cooperation.
I could seriously go on & on. At the end of the day, I smile. I smile through it all because complaining to anyone is not worth it. It doesn't change anything. I watch my kids & devise new ways to try to outsmart them. HA! At the end of the day I find my silver lining.
So Doc goes on to say that we need to start looking into healthier eating. Yes.... healthier eating would be nice. I'm already eating healthier than I was. My new nickname is granola. Healthier eating also doesn't change the circumstances surrounding our lives.
We should also discuss exercise. Doc... I have a 2 year old & a 4 year old. I get more exercise in a day than you probably get in a year.
Maybe.... you need to talk to a therapist or clergy. Immerse yourself in religion or yoga.
Um... I know why I'm tired. I don't snore. I'm in relative good health. My husband snores. I'm a light sleeper. My husband hasn't been home at night. I am always sleeping with one ear cocked to the world to make sure we're safe.
My kids... barely make it through a night without waking up. My son... would sleep clear through 13 hours if his ears didn't hurt & his nose wasn't congested, but drs.... have so far been unable to help clear that up. And so we see dr after dr. Ya know why? Not because he has special needs.... but because we have relied on buttheaded drs to help us and all they've seen is a kid with down syndrome who "gets sick more than other kids because of it" AAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHH
My 4 year old is afraid of the dark & says she has bad dreams. She in turn comes to wake me up.
Broken sleep = tired the next day. 1+1=2 It has nothing to do with special needs you dingbat! Wake a chick up at night and she'll be tired in the morning.
So yeah... I need to talk to someone. My travel agent. I need a few days by myself on the quiet shores of some deserted island where there is no one demanding anything, no schedules to be maintained, no dogs that stink the place up, etc. A sandy shore where I can just breathe. And maybe drool. But definitely breathe.
I told the dr that my mental fatigue has been there for a long time. That's nothing new. I have figured out ways to calm the mind for bed. And I always manage to get out of bed & keep going. Physical fatigue is a direct result of my not sleeping the last few weeks. Cure my kid and help the other one realize that the dark isn't so bad.... Then we've got the makings of a good night's sleep. Help the husband not snore? HA! Even better.
He finally agreed that my fatigue was just the result of broken sleep and said "I'm not ruling out biomedical causes..." There's no biomedical cause. I just need some unbroken sleep. "We'll have your results tomorrow." He made me feel like my thyroid issue was completely made up and that I haven't been dealing with it forever. He's the one who wanted me to come in for a follow up. He's the one who upped my synthroid because he didn't like my numbers. I didn't. I got my bloodwork from my old dr and went about my merry way.
Don't tell me my fatigue is because I have a child with special needs. The drs give me more stress than he ever will. Well... short of the broken computers he's been leaving around.
I have been hypothyroid (Hashimoto's) for years. Years. (That's important) I had bloodwork done in NYC and brought it down here to my new dr. He didn't like my TSH numbers saying they were to high and not in the newly recommended 1-2 range. So he increased my Synthroid. He said I should come back for my follow up 6-8 weeks so we can see how I was doing.
Today was that follow up. The day started out like any other. Me barely able to keep my eyes open because I hardly slept the night before. Kids demanding everything under the sun like little gaitling guns firing off their rounds.
The exceptions... instead of snoring, it was the "did I hear something or someone come in the door?" The sound of the heater turning on. The searing pain in my ears that felt like someone shoving a qtip in to hard. Meredith waking up because she'd had a bad dream. Sean waking up WAY to early because he had decided not to nap in favor of falling asleep to early.
I dropped the kids off at school and headed off to my dr's appointment. I waited & then did the triage. Dr walks in and we discuss my ears. They look good. Pain is probably coming from the brewing sinus infection causing congestion. Don't even get me started.
How am I feeling otherwise? "Well doc... my wrists hurt. Which I find odd. And I'm tired, but that's because I haven't been sleeping. And... I'm always cold. Always. I don't know if it's because my thyroid is acting up or if I was just kind of expecting it to be warmer down here compared to NYC."
He feels around.... "Your thyroid does feel full. We'll check all the thyroid hormone levels. Not just the TSH."
But...... lets talk about this fatigue. Oh yes.... Lets. Lets discuss it. PPPppppppppppllllllllllllleeeeeeeeeeeeaaaaaaaasssssssssssssssseeeeeeeeeeee.
He says there are two types of fatigue. Mental and physical. He thinks I told him I was tired in relation to the thyroid. And so to disprove that (or so I assume) he says, "Having a child with special needs is stressful. Very stressful. It's perfectly normal for a woman in your position to feel stressed."
Now here's the thing about having a child with special needs. IT"S NOT STRESSFUL!!!! Sean is a typical 2 year old.
Wanna know what's stressful? A son who can't seem to rid himself of a medication resistant bacteria and doctors who proclaim that "this" antibiotic is going to finally do the trick. Except that their miracle cure has already been tried. They'd have known that if they had bothered to read the notes THEY wrote.
Stressful is spending every waking minute looking at, doing something for, arguing with or any of the other numerous things that can be placed here for my children and then having them end up in my bed that night with their feet touching me. It's not that I don't love my children and don't wanna comfort them. It's just that I'm tired of seeing them. Mommy needs a little down time too.
Stresful is knowing that there are 2 major holiday parties coming up in a few days and I'll probably be taking my kids alone. Stressful is knowing that my incredibly shy daughter will be stuck to my leg and grunting at people who try to say hi while my son tries to take off at full speed through the crowd.
Stressful is having a dog who was just treated at the vet for God knows what and thensome poop in your house on your freshly scrubbed floors and your son discovering it. Oh yeah fun times. Or a dog who hurts his damn foot the day before Thanksgiving. My dogs are high maintenance. Lets leave it at that.
Stresful is not having consistent help or any cooperation.
I could seriously go on & on. At the end of the day, I smile. I smile through it all because complaining to anyone is not worth it. It doesn't change anything. I watch my kids & devise new ways to try to outsmart them. HA! At the end of the day I find my silver lining.
So Doc goes on to say that we need to start looking into healthier eating. Yes.... healthier eating would be nice. I'm already eating healthier than I was. My new nickname is granola. Healthier eating also doesn't change the circumstances surrounding our lives.
We should also discuss exercise. Doc... I have a 2 year old & a 4 year old. I get more exercise in a day than you probably get in a year.
Maybe.... you need to talk to a therapist or clergy. Immerse yourself in religion or yoga.
Um... I know why I'm tired. I don't snore. I'm in relative good health. My husband snores. I'm a light sleeper. My husband hasn't been home at night. I am always sleeping with one ear cocked to the world to make sure we're safe.
My kids... barely make it through a night without waking up. My son... would sleep clear through 13 hours if his ears didn't hurt & his nose wasn't congested, but drs.... have so far been unable to help clear that up. And so we see dr after dr. Ya know why? Not because he has special needs.... but because we have relied on buttheaded drs to help us and all they've seen is a kid with down syndrome who "gets sick more than other kids because of it" AAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHH
My 4 year old is afraid of the dark & says she has bad dreams. She in turn comes to wake me up.
Broken sleep = tired the next day. 1+1=2 It has nothing to do with special needs you dingbat! Wake a chick up at night and she'll be tired in the morning.
So yeah... I need to talk to someone. My travel agent. I need a few days by myself on the quiet shores of some deserted island where there is no one demanding anything, no schedules to be maintained, no dogs that stink the place up, etc. A sandy shore where I can just breathe. And maybe drool. But definitely breathe.
I told the dr that my mental fatigue has been there for a long time. That's nothing new. I have figured out ways to calm the mind for bed. And I always manage to get out of bed & keep going. Physical fatigue is a direct result of my not sleeping the last few weeks. Cure my kid and help the other one realize that the dark isn't so bad.... Then we've got the makings of a good night's sleep. Help the husband not snore? HA! Even better.
He finally agreed that my fatigue was just the result of broken sleep and said "I'm not ruling out biomedical causes..." There's no biomedical cause. I just need some unbroken sleep. "We'll have your results tomorrow." He made me feel like my thyroid issue was completely made up and that I haven't been dealing with it forever. He's the one who wanted me to come in for a follow up. He's the one who upped my synthroid because he didn't like my numbers. I didn't. I got my bloodwork from my old dr and went about my merry way.
Don't tell me my fatigue is because I have a child with special needs. The drs give me more stress than he ever will. Well... short of the broken computers he's been leaving around.
Monday, November 26, 2012
Where to begin....
We learned at Meredith's 4 year old well visit with the pediatrician that she hasn't grown any taller in the passed year. On average children grow 2-4 inches a year. When they don't, it raises some red flags. Meredith is now being followed by the endocrinologist. She's had a bone plate scan which has come back normal. Now we must figure out a way to get Lady M to have her blood taken.
We tried a couple weeks ago with the lab at CMC Huntersville, but.... well... lets just say it didn't go well. And not because of Meredith who was as perfect as any 4 year can & would be.
Meredith is also eating some veggies (be still my beating heart) and steak. Yes.... you read that right. Steak.
Sean on the other hand has grown an amazing 3-3.5 inches in the last 7 mos. And that's not including the latest unmeasured (as of yet) growth spurt he's had. He went from a cool 18-24 month pant size to a whopping 2T. He's also wearing 2t shirts. Except for his short arms (no gorillas here), he could easily wear a 3t shirt. CRAZY!!
Sean's TSH levels have been normal. Thank goodness.
The last few months have been hard on Sean though. He's had these awful recurrent ear infections & sinus infections. He's missed more play dates and such because of them.
He's now been on more antibiotics than I am comfy with and we've started a new probiotic. We've also upped the vitamin D and a couple other of his supplements in the hopes of helping his body fight the infection.
We also had some immunoglobulin (antibodies) blood tests done. They've shown that his IgG & IgM are both within normal limits, but to close for comfort to too low. SO we're going to the immunologist. His nuetrophils & tcells are both normal. So his immune system SHOULD be able to fight the infection. Especially with the antibiotics.
So why isn't his body fighting the infections? Why aren't the antibiotics working? Is it a resistant bacteria?
What we know right now is that Sean does have a penicillin resistant bacteria. It's not the end of the world, but at least we have somewhat of an answer as to why his symptoms keep coming back. I have my theories as to why it's happening in the first place.
We go back to Sean's regular ENT on December 3 (Monday) to see what our next step is. We know that antibiotics are not working. Even Suprax which is the preferred drug for this bacteria.
What else are my kids doing?
Well Meredith is reading sight words. She's able to sound out letters. You say cat and she immediately sounds out the "c" sound and says "c". She's writing her numbers & letters. She's really amazing.
Sean is talking & communicating so much!!! I can't believe how much he relates to his world in so many typical ways. I'll ask a question and he'll answer. He recognizes that he can't say certain things like "hungry". If we're not paying attention to his cues, he'll go over to his seat & pull it out.
He's potty training. Yes. My 2 year old boy is potty training. I never thought it would start at 2 because he's a boy. I really didn't think it would start at 2 because he has down syndrome. He recognizes when he's pooped and will come over & say "Ooooooooohhhhhh". Then the stench smacks you in the face.
He'll grab his diaper & look down when he's peeing. He's gone on the potty a couple of times, but I think he's afraid of it. He's a little to skinny to sit on it alone.
And if you ask really nicely I'll tell you our awesomely funny 1st time on the potty story.
Both kids are discovering that the other one is actually fun to have around. HA! They can actually play games now that Sean follows Lady M's directions. Did you see my eye roll there?
Sean started gymnastics this morning. Rob was able to take him and said he did really well. He needed minimal assistance and did really well until Mr. Frank tried to have him do a somersault.
We had Sean's transition to CMS (school system) meeting this morning. There were some good things, but there were also some things I wasn't so thrilled with. I have a few months before I have to really think about it. For now I'm going to live in ignorant bliss that my baby is going to be 3 years old.
We tried a couple weeks ago with the lab at CMC Huntersville, but.... well... lets just say it didn't go well. And not because of Meredith who was as perfect as any 4 year can & would be.
Meredith is also eating some veggies (be still my beating heart) and steak. Yes.... you read that right. Steak.
Sean on the other hand has grown an amazing 3-3.5 inches in the last 7 mos. And that's not including the latest unmeasured (as of yet) growth spurt he's had. He went from a cool 18-24 month pant size to a whopping 2T. He's also wearing 2t shirts. Except for his short arms (no gorillas here), he could easily wear a 3t shirt. CRAZY!!
Sean's TSH levels have been normal. Thank goodness.
The last few months have been hard on Sean though. He's had these awful recurrent ear infections & sinus infections. He's missed more play dates and such because of them.
He's now been on more antibiotics than I am comfy with and we've started a new probiotic. We've also upped the vitamin D and a couple other of his supplements in the hopes of helping his body fight the infection.
We also had some immunoglobulin (antibodies) blood tests done. They've shown that his IgG & IgM are both within normal limits, but to close for comfort to too low. SO we're going to the immunologist. His nuetrophils & tcells are both normal. So his immune system SHOULD be able to fight the infection. Especially with the antibiotics.
So why isn't his body fighting the infections? Why aren't the antibiotics working? Is it a resistant bacteria?
What we know right now is that Sean does have a penicillin resistant bacteria. It's not the end of the world, but at least we have somewhat of an answer as to why his symptoms keep coming back. I have my theories as to why it's happening in the first place.
We go back to Sean's regular ENT on December 3 (Monday) to see what our next step is. We know that antibiotics are not working. Even Suprax which is the preferred drug for this bacteria.
What else are my kids doing?
Well Meredith is reading sight words. She's able to sound out letters. You say cat and she immediately sounds out the "c" sound and says "c". She's writing her numbers & letters. She's really amazing.
Sean is talking & communicating so much!!! I can't believe how much he relates to his world in so many typical ways. I'll ask a question and he'll answer. He recognizes that he can't say certain things like "hungry". If we're not paying attention to his cues, he'll go over to his seat & pull it out.
He's potty training. Yes. My 2 year old boy is potty training. I never thought it would start at 2 because he's a boy. I really didn't think it would start at 2 because he has down syndrome. He recognizes when he's pooped and will come over & say "Ooooooooohhhhhh". Then the stench smacks you in the face.
He'll grab his diaper & look down when he's peeing. He's gone on the potty a couple of times, but I think he's afraid of it. He's a little to skinny to sit on it alone.
And if you ask really nicely I'll tell you our awesomely funny 1st time on the potty story.
Both kids are discovering that the other one is actually fun to have around. HA! They can actually play games now that Sean follows Lady M's directions. Did you see my eye roll there?
Sean started gymnastics this morning. Rob was able to take him and said he did really well. He needed minimal assistance and did really well until Mr. Frank tried to have him do a somersault.
We had Sean's transition to CMS (school system) meeting this morning. There were some good things, but there were also some things I wasn't so thrilled with. I have a few months before I have to really think about it. For now I'm going to live in ignorant bliss that my baby is going to be 3 years old.
Thursday, November 22, 2012
School pictures
Can you believe that Sean is even old enough to have school pictures done? I can't. But they had them done last week. We got the proofs back. It's gonna be hard to pick, but pick we must.
I still can't over how well both my kids are doing in school. Meredith is adding & subtracting. She's really catching on to visual cues for solving math "problems". It's so fabulous to see. And Sean is saying more. He's really moving those lips & vocalizing coherent words. He to is really showing a great understanding of how things relate to each other. He can recognize several things we didn't think he'd know (yet).
Going to school has done amazing things for both of them. All of the teachers Meredith has had the last couple of years have been wonderful. And I really can't say enough good things about their preschool. We have truly been blessed to find a school that is so good at teaching and nurturing my kids' minds.
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