So yesterday was not one of my better days. But what a difference an evening of Challenger League bowling, time with Tina, a good night's sleep and an hour of heavy lifting at the gym can do. Body and soul are recharged.
I don't get down on my situation very often, but I attribute yesterday's malaise to the ARD meeting. The meeting itself went well, the entire staff is on Amanda's side and do right by us. But even after a great party there is the residual hangover. yesterday was just that.
Tuesday, March 30, 2010
Monday, March 29, 2010
Post ARD
We had her ARD meeting last week. There were several test results we had to review, the least favorite being the IQ test. While the score was in line with what she has tested to in the past, it is still so painful to see on paper. All of what it means was laid before me, how our world will hardly deviate from its course, how I must continue to take care of myself so I can take care of my child for years after other parents are complaining of the empty nest. How I will never have grandchildren to spoil or will have to pick my own nursing home and all the things in between.
Yes, I joke that I am fortunate that I don't have to save for college or a wedding, but that is only the price of "normal." Sometimes I hate that has been denied her and me.
To quote the recently honored Dennis Hopper, "This is some heavy shit man." I think he has said that in most of his movies.
I was reading one of my favorite blogs, To The Max, and posted on it was the Parents Bill of Rights comprised by its author. I'm going to repost it here with a few coments, I agree with so much of it:
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are. - Tina says I have murder eyes that shield me from most people. She says she wants them too.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever. - It's great your child is so amazing, pardon me while I drag mine out of the store during a meltdown
* We have a right to wonder “What if…” every so often. - YES WE DO and that is just fine
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun. - She is an awesome playmate, channelling my inner child fixes most things
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout. - OK, I don't drink light wine, but believe me, the white cup in my hand doesn't have apple juice in it.
* We have a right to react to people’s ignorance in whatever way we feel necessary. - that would be the murder eyes thing again, coupled with my smart ass attitude I don't suffer repeat offenders
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child. - A-MAN!
* We have a right to go through the grieving process and realize we may never quite be "over it." - it's not for ourselves that parent's grieve
* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us. - she is a great sweeper and laundry folder
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio. - or what ever
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things. - I've done that
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things. - tough days just happen
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs. - as you can tell at this moment, sometimes it's just plain hard
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it." - it's as simple as this, failure is not an option
* We have a right to wish that sometimes things could be easier. - yes we do
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.
Compiled in honor of my little boy, Max, and all of our beautiful children on June 17, 2009.
Yes, I joke that I am fortunate that I don't have to save for college or a wedding, but that is only the price of "normal." Sometimes I hate that has been denied her and me.
To quote the recently honored Dennis Hopper, "This is some heavy shit man." I think he has said that in most of his movies.
I was reading one of my favorite blogs, To The Max, and posted on it was the Parents Bill of Rights comprised by its author. I'm going to repost it here with a few coments, I agree with so much of it:
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are. - Tina says I have murder eyes that shield me from most people. She says she wants them too.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever. - It's great your child is so amazing, pardon me while I drag mine out of the store during a meltdown
* We have a right to wonder “What if…” every so often. - YES WE DO and that is just fine
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun. - She is an awesome playmate, channelling my inner child fixes most things
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout. - OK, I don't drink light wine, but believe me, the white cup in my hand doesn't have apple juice in it.
* We have a right to react to people’s ignorance in whatever way we feel necessary. - that would be the murder eyes thing again, coupled with my smart ass attitude I don't suffer repeat offenders
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child. - A-MAN!
* We have a right to go through the grieving process and realize we may never quite be "over it." - it's not for ourselves that parent's grieve
* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us. - she is a great sweeper and laundry folder
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio. - or what ever
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things. - I've done that
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things. - tough days just happen
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs. - as you can tell at this moment, sometimes it's just plain hard
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it." - it's as simple as this, failure is not an option
* We have a right to wish that sometimes things could be easier. - yes we do
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.
Compiled in honor of my little boy, Max, and all of our beautiful children on June 17, 2009.
Thursday, February 25, 2010
A step in the right direction
This morning's meltdown was brought to my home by a combination of high tech and fantasy.
Amanda was determined to take her "phone" to school this morning. Her latest phone is my old Blackberry, less battery and sim card. We explained to her that she wasn't allowed to take a cellphone to school. her answer was, "I... Don't...Care...Take...I...Anyway!!!!!!!!!!!!!"
This was the first time I ever heard her use the word, "anyway." I don't think I like it.
We continued to explain to her that she just couldn't do it. These meltdowns have lasted for hours, but today she pulled it back together in about 10 minutes. She said, "OK, I understand."
Now, I don't know if she held it together all day, or if the whole class was punished by a redheaded Tasmanian Devil. I was pressed by time to get to a meeting at work and then to get to a luncheon with a customer to hear the President of the St. Louis Federal Reserve Bank speak.
The current economic crisis is much easier to comprehend than the combination of my daughter's imagination and spontaneous desires.
I just hope the day went well for her and all involved.
Amanda was determined to take her "phone" to school this morning. Her latest phone is my old Blackberry, less battery and sim card. We explained to her that she wasn't allowed to take a cellphone to school. her answer was, "I... Don't...Care...Take...I...Anyway!!!!!!!!!!!!!"
This was the first time I ever heard her use the word, "anyway." I don't think I like it.
We continued to explain to her that she just couldn't do it. These meltdowns have lasted for hours, but today she pulled it back together in about 10 minutes. She said, "OK, I understand."
Now, I don't know if she held it together all day, or if the whole class was punished by a redheaded Tasmanian Devil. I was pressed by time to get to a meeting at work and then to get to a luncheon with a customer to hear the President of the St. Louis Federal Reserve Bank speak.
The current economic crisis is much easier to comprehend than the combination of my daughter's imagination and spontaneous desires.
I just hope the day went well for her and all involved.
Some hours later............
Well, it would appear that Amanda conquered her inner hulk and had a good day. I told her I was proud of her and she said, "Good choices." It gives me hope.
Wednesday, February 24, 2010
No comfort from the food of choice
Anyone who knew me in my teenage years would know that I was truly addicted to Chef Boyardee Ravioli. That stuff was like crack to me. I would eat a can every other day or even 5 days out of 7.
It was so bad, that when I got married the groomsmen gave Tina a case of the stuff so she wouldn't have to cook for the first couple weeks of our marriage.
When I started traveling a lot for work, I would eat a can on the weekend while Tina was at work. It was indeed my comfort food.
But, when Amanda was born in March of 1998 she was kept in the hospital for 6 weeks. We spent as many hours as possible at the hospital, but we eventually had to go home. It was about the 4th week when I was at home in the mid afternoon after being relieved by Tina. I came home, to any empty house, a closed nursery door, and a heart that was breaking. I popped a can, heated it up on the stove, put it in a bowl. Something I had done thousand times before, too many times really. The first bite didn't help nor the second. I scraped the rest in the sink and washed it away and haven't had any Chef Boyardee product since. Early April will be twelve years.
It was so bad, that when I got married the groomsmen gave Tina a case of the stuff so she wouldn't have to cook for the first couple weeks of our marriage.
When I started traveling a lot for work, I would eat a can on the weekend while Tina was at work. It was indeed my comfort food.
But, when Amanda was born in March of 1998 she was kept in the hospital for 6 weeks. We spent as many hours as possible at the hospital, but we eventually had to go home. It was about the 4th week when I was at home in the mid afternoon after being relieved by Tina. I came home, to any empty house, a closed nursery door, and a heart that was breaking. I popped a can, heated it up on the stove, put it in a bowl. Something I had done thousand times before, too many times really. The first bite didn't help nor the second. I scraped the rest in the sink and washed it away and haven't had any Chef Boyardee product since. Early April will be twelve years.
Monday, February 22, 2010
Even just a slice is nice
Amanda has been having to keep track of the weather for a school project. She does this at school during the week and then I help her over the weekend. She isn't really interested in dew points, barometric pressure, El Nino, or other such variances. What Amanda really wants to know is today a purple coat day or a pink coat day?
Her purple coat is a down coat and keeps her very warm. Her pink coat is a lighter material and is designed for days in the 50's. When you are 11, that is what matters. But for school we get a little more accurate.
This morning I was dropping her off at school and she checked her backpack. I heard, "Uh oh! No homework." I told her we would bring it up to school when Tina picked her up this afternoon and then I drove on to the gym.
After my workout I arrived home and Tina told me something I have never heard before, "Amanda called." Amanda never talks on the phone, but this is something that she has been working on with her teachers.
I asked what about. Tina does a perfect Amanda impersonation, "Hey Mama! Forgot homework." The school is less than half a mile from our house and Tina drove up the sheet with our observations on it. She said Amanda was beaming proud and so was Tina. It was a slice of normal that we seldom get to see. It was nice.
Her purple coat is a down coat and keeps her very warm. Her pink coat is a lighter material and is designed for days in the 50's. When you are 11, that is what matters. But for school we get a little more accurate.
This morning I was dropping her off at school and she checked her backpack. I heard, "Uh oh! No homework." I told her we would bring it up to school when Tina picked her up this afternoon and then I drove on to the gym.
After my workout I arrived home and Tina told me something I have never heard before, "Amanda called." Amanda never talks on the phone, but this is something that she has been working on with her teachers.
I asked what about. Tina does a perfect Amanda impersonation, "Hey Mama! Forgot homework." The school is less than half a mile from our house and Tina drove up the sheet with our observations on it. She said Amanda was beaming proud and so was Tina. It was a slice of normal that we seldom get to see. It was nice.
Wednesday, February 17, 2010
Some things concern me
So last night I'm getting ready for bed and I look at myself in the mirror and I get concerned with what I see. I immediately go to Tina and ask what I think is a very important and serious question, "Do you think my head is still growing?"
At first I thought I had killed her. She sucked in so much air to laugh at me that she started to choke. When she gained control, she replied in a concerned toned, "What the hell is wrong with you?"
I said, "It just looks like my head is bigger than it was a couple of weeks ago."
She gave me the following reply. "You have a big head, but I don't think it is bigger than it was, but that is ok because you have a thick neck and your shoulders and arms are big too. If you had arms like your brother with your head you would look like a freak."
Then I said, "Well, it's just that I remember seeing Hamlet, and the scene where Hamlet holds Yorick's skull in his hand would be played out like this should they use mine.
Hamlet drags a skull on stage in a wagon, "Alas, poor John, I knew him well. And he had a really big head, kind of like Shrek."
This got me another, "what the hell is wrong with you?" and that was the end of that and we watched LOST.
Just to be safe, I went and got a haircut this morning.
At first I thought I had killed her. She sucked in so much air to laugh at me that she started to choke. When she gained control, she replied in a concerned toned, "What the hell is wrong with you?"
I said, "It just looks like my head is bigger than it was a couple of weeks ago."
She gave me the following reply. "You have a big head, but I don't think it is bigger than it was, but that is ok because you have a thick neck and your shoulders and arms are big too. If you had arms like your brother with your head you would look like a freak."
Then I said, "Well, it's just that I remember seeing Hamlet, and the scene where Hamlet holds Yorick's skull in his hand would be played out like this should they use mine.
Hamlet drags a skull on stage in a wagon, "Alas, poor John, I knew him well. And he had a really big head, kind of like Shrek."
This got me another, "what the hell is wrong with you?" and that was the end of that and we watched LOST.
Just to be safe, I went and got a haircut this morning.
Tuesday, February 16, 2010
She saw enough
Sunday afternoon I was on the couch watching the Winter Olympics. It is only once every four years that I get to watch the Nordic Combined event and I wanted to enjoy it. For those of you who don't know what Nordic Combined is, it is a duel event. In the morning is ski jumping and in the afternoon is cross country skiing. I don't begin to understand the elements of ski jumping judging. There is so much more to it than just how far someone can fly and land in one piece.
Amanda sat beside me and asked what I was doing. I told her that the Olympics were on and they were fun to watch. She stared at the TV in horror and after seeing a German fly through the air, she quickly turned off the TV. I took the remote and turned it back on. She turned it off. I turned it back on and told her to stop it. I swear I am not taking a blogger's license with what she said next, "Can't do that special Olympics. I get killed."
Oh my lord, I had to reassure that won't be an event this this year. And, even if it were we wouldn't let her do it.
Amanda sat beside me and asked what I was doing. I told her that the Olympics were on and they were fun to watch. She stared at the TV in horror and after seeing a German fly through the air, she quickly turned off the TV. I took the remote and turned it back on. She turned it off. I turned it back on and told her to stop it. I swear I am not taking a blogger's license with what she said next, "Can't do that special Olympics. I get killed."
Oh my lord, I had to reassure that won't be an event this this year. And, even if it were we wouldn't let her do it.
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