Nate had his 8th grade graduation yesterday. In the past 5 days, I have attended three different 8th grade celebrations and one high school graduation.
I can tell you that Nate's was very different from the other three I attended. At the other ceremonies, awards were given. There were no awards given out at Nate's graduation. At some of the ceremonies, there was always the question, "Where are you going in the fall?". At Nate's ceremony, no one asked that question. All 12 kids were going to the "High School" hallway at Southview. At the other three celebrations, some students were chosen to speak. At Nate's, some of the graduates can not speak. The other ceremonies were at least an hour long and full of traditions. Yesterday, the ceremony lasted 15 minutes and was very casual.
While there were many startling differences between Nate's graduation and the other ones, there was also one distinct similarity.....proud families. We knew that our students at Southview didn't meet the "academic requirements" to graduate from the 8th grade. We also know that our students don't have the same futures as the students from the other ceremonies. However, that doesn't make our child's graduation any less important. In our hearts, they are just as smart and capable as the other kids. In our hearts, their accomplishments are just as important. In our hearts, our kids are just as important.
We celebrated Nate's graduation. We had 5 family members and 6 members of his team attend. All 11 of us were very proud to see Nate walk across that stage (with little verbal prompting) and receive his certificate.
Tuesday, May 22, 2012
Friday, April 27, 2012
Private Practice again.....
Tuesday night's episode of Private Practice did it again. They totally nailed my feelings. I'll give you the synopsis. Addison just adopted a baby boy. Her sister-in-law, Amelia, is pregnant and just learned that the baby she is carrying does not have a brain. Amelia is angry....so angry. She can't look at Addison or her new baby. In this scene, Amelia is saying all the things I wish I had the courage to say 12 years ago. I was told that I couldn't be angry, that I had no right to be angry.
Well, I was angry. I was bitter. After we got Nate's diagnosis, I couldn't look at other kids. It just depressed me. I pulled away from my best friend from high school. She had two typical boys and I didn't. We had been college roommates and in each other's weddings, but I couldn't talk to her. I wanted what she had so badly, that it made me ashamed of myself. It also made me feel like such a failure. Why couldn't I produce a typical child? What did I do wrong?
My friend and I have recently reconnected and had dinner a few weeks ago. We talked about my feelings and she told me that she understood why I had to pull away. She knew that I just needed time. I'm getting there. I like to hear stories about her boys.....their accomplishments, but I still get a pang. At least now I know that that's ok.
This scene is fabulous. You can feel Amelia's pain and hurt for her. I admire her strength and honesty.
Well, I was angry. I was bitter. After we got Nate's diagnosis, I couldn't look at other kids. It just depressed me. I pulled away from my best friend from high school. She had two typical boys and I didn't. We had been college roommates and in each other's weddings, but I couldn't talk to her. I wanted what she had so badly, that it made me ashamed of myself. It also made me feel like such a failure. Why couldn't I produce a typical child? What did I do wrong?
My friend and I have recently reconnected and had dinner a few weeks ago. We talked about my feelings and she told me that she understood why I had to pull away. She knew that I just needed time. I'm getting there. I like to hear stories about her boys.....their accomplishments, but I still get a pang. At least now I know that that's ok.
This scene is fabulous. You can feel Amelia's pain and hurt for her. I admire her strength and honesty.
Friday, April 6, 2012
still angry
A friend and I were talking today about Easter plans and church. I mentioned that I wouldn't be going because I was still so angry about the boys. She corrected me. I was angry about Noah. Not all the boys, just Noah. She was right.
When I was pregnant with Noah, I prayed and prayed that he wouldn't have autism. I was convinced that God wouldn't let it happen again. Twice was one thing, but a third? He couldn't be that cruel. I said these words very often to myself and others. I actually thought that my third child would be able to help Nick care for Nate when they were older. I thought that Nick would have a sibling to play with. I thought everything would be ok.
I still can't let go of my anger. It fuels me in my war. It's what helps my fight for all the help and services that my boys need. I just hope it won't consume me.
Getting Noah's diagnosis broke my heart......and, worse, it broke my faith.
When I was pregnant with Noah, I prayed and prayed that he wouldn't have autism. I was convinced that God wouldn't let it happen again. Twice was one thing, but a third? He couldn't be that cruel. I said these words very often to myself and others. I actually thought that my third child would be able to help Nick care for Nate when they were older. I thought that Nick would have a sibling to play with. I thought everything would be ok.
I still can't let go of my anger. It fuels me in my war. It's what helps my fight for all the help and services that my boys need. I just hope it won't consume me.
Getting Noah's diagnosis broke my heart......and, worse, it broke my faith.
Tuesday, March 20, 2012
Autism Could Bankrupt Us
Nate got into the Teens in Motion program for this summer. That's great! He will have so many experiences and chances for independence. It's $900. I know that is reasonable for an 8 week camp, however....autism is very expensive.
We always try to do what is best for the boys.....meds, therapies, and good doctors. Unfortunately, everything comes at a price.
ABA-
$120 co-pays/week for Nate
$120 co-pays/week for Noah
$60 co-pays/week for Nick
OT-
$20 co-pay/week for Noah
$20 co-pay/biweekly for Nate
Psychiatrist-
$30 co-pay for each boy every 3 months (or sooner if needed)
In-home help-
$11/hour, it varies from 40 to 100 hours a month
Speech-
It's free through the Home Health Care section of our insurance. Please tell everyone you know to explore this avenue.
Tim and I both teach full-time. We make too much money to receive help from the government and don't have enough to cover all the expenses ourselves. When I applied for SSI benefits for the boys, the woman basically laughed at me. We are on many wait lists for financial help, but are not "needy" enough. Organizations like Action for Autism are helping. They pay for one ABA co-pay per boy, per week. They also covered the $350 for Nate to attend Spring Break Camp. St. Louis ARC reimburses me $6/hour for the in-home help for up to 250 hours per boy, per year. I go through those hours like water.
I know there are some expenses we won't have. I won't be paying car insurance for Nate and Noah. I also won't be sending them to college. However, if I had compiled a list of autism expenses since their diagnoses, I think it would rival car insurance and college tuition.
So, gone are some dreams.....bigger house, no. Condo at the Lake, no. Tour of Europe, no. Hello, bigger dreams.....Nate and Noah living in an assisted living facility, yes.
We always try to do what is best for the boys.....meds, therapies, and good doctors. Unfortunately, everything comes at a price.
ABA-
$120 co-pays/week for Nate
$120 co-pays/week for Noah
$60 co-pays/week for Nick
OT-
$20 co-pay/week for Noah
$20 co-pay/biweekly for Nate
Psychiatrist-
$30 co-pay for each boy every 3 months (or sooner if needed)
In-home help-
$11/hour, it varies from 40 to 100 hours a month
Speech-
It's free through the Home Health Care section of our insurance. Please tell everyone you know to explore this avenue.
Tim and I both teach full-time. We make too much money to receive help from the government and don't have enough to cover all the expenses ourselves. When I applied for SSI benefits for the boys, the woman basically laughed at me. We are on many wait lists for financial help, but are not "needy" enough. Organizations like Action for Autism are helping. They pay for one ABA co-pay per boy, per week. They also covered the $350 for Nate to attend Spring Break Camp. St. Louis ARC reimburses me $6/hour for the in-home help for up to 250 hours per boy, per year. I go through those hours like water.
I know there are some expenses we won't have. I won't be paying car insurance for Nate and Noah. I also won't be sending them to college. However, if I had compiled a list of autism expenses since their diagnoses, I think it would rival car insurance and college tuition.
So, gone are some dreams.....bigger house, no. Condo at the Lake, no. Tour of Europe, no. Hello, bigger dreams.....Nate and Noah living in an assisted living facility, yes.
Thursday, March 8, 2012
What's best for kids......
Nate and Noah should not be in a "typical" school. I know this. Tim knows this. Anyone who has met them knows this.
Not all parents know this about their kids. It's a shame. Their kids are sitting in a class and not getting anything out of it. They need an adult with them at all times to "survive" the day. They are sitting through lessons about writing a 5-paragraph essay. However, they struggle to write a paragraph and will never hold a job that requires a 5-paragraph essay. Not all kids need to know the names of all the Presidents. Sitting in classes and not learning anything is such a waste of their time. Don't parents know that when you have a special needs child time is your enemy?
Putting kids in an alternate educational setting does not limit their potential. It does just the opposite. It opens so many doors for them. My kids are learning skills that will help them survive the "real world." They will never be able to write a 5-paragraph essay, but they may be able to hold a job that is commiserate to their ability. Some things aren't important for everyone to know.
I don't know why parents are so opposed to putting their kids in an alternate educational setting. I think that one of the worst things a parent of a special child can be is unrealistic. I have always asked the boys' teachers and therapists to be very honest with us. Putting our heads in the sand does not help our boys. Telling a parent that their special child is doing well when they are barely staying in the room or understanding what is going on does not help. What will these parents do when their child "graduates" from the "typical" high school and does not have any real world skills?
Unfortunately, there is a stigma on "special schools". When my boys got into the "special school", my friends and I went out to celebrate. I felt like I had gotten them into Harvard. For my boys, it is their Harvard.
Not all parents know this about their kids. It's a shame. Their kids are sitting in a class and not getting anything out of it. They need an adult with them at all times to "survive" the day. They are sitting through lessons about writing a 5-paragraph essay. However, they struggle to write a paragraph and will never hold a job that requires a 5-paragraph essay. Not all kids need to know the names of all the Presidents. Sitting in classes and not learning anything is such a waste of their time. Don't parents know that when you have a special needs child time is your enemy?
Putting kids in an alternate educational setting does not limit their potential. It does just the opposite. It opens so many doors for them. My kids are learning skills that will help them survive the "real world." They will never be able to write a 5-paragraph essay, but they may be able to hold a job that is commiserate to their ability. Some things aren't important for everyone to know.
I don't know why parents are so opposed to putting their kids in an alternate educational setting. I think that one of the worst things a parent of a special child can be is unrealistic. I have always asked the boys' teachers and therapists to be very honest with us. Putting our heads in the sand does not help our boys. Telling a parent that their special child is doing well when they are barely staying in the room or understanding what is going on does not help. What will these parents do when their child "graduates" from the "typical" high school and does not have any real world skills?
Unfortunately, there is a stigma on "special schools". When my boys got into the "special school", my friends and I went out to celebrate. I felt like I had gotten them into Harvard. For my boys, it is their Harvard.
Monday, February 13, 2012
Nick's Valentines
Nick was sitting at the table tonight writing names on Valentines for his class party tomorrow. He suddenly got up and ran down the hall. I asked him where he was going and his reply was, "You'll see." I followed him just in time to see him coming out of Nate's room. I asked him if he made a Valentine for Nate. His answer, "Yes, and I hid it under his pillow. It's a surprise."
This is just another example of how much Nick worships his older brother. It has never mattered to Nick that he has surpassed Nate in so many ways. All he knows is that his older brother is the best.
I am sometimes amazed by his adoration for Nate. I know he loves his brother, but this is more than that. He truly accepts Nate for who he is....and who he isn't. He has never complained when Nate has been the cause of a sudden change of plans or making us late for something. He doesn't make fun of Nate when he is having a meltdown or exhibiting some strange behavior. When we moved Nate out of the room with Nick, Nick was a little sad. When I asked him why, he told me that he would miss all the conversations that he and Nate would have when they went to bed. Now, you know as well as I do, that Nate never said a word. However, Nick is convinced that Nate was a very active participant in these conversations.
I only hope that when Nick is a teenager, he still thinks that Nate is as awesome as he does now. I hope that peer pressure or outside influences won't tarnish his love for his older brother. Just think what a great place the world would be if everyone thought like Nick.......
Now if I could only get Nick to feel the same way about his little brother........
This is just another example of how much Nick worships his older brother. It has never mattered to Nick that he has surpassed Nate in so many ways. All he knows is that his older brother is the best.
I am sometimes amazed by his adoration for Nate. I know he loves his brother, but this is more than that. He truly accepts Nate for who he is....and who he isn't. He has never complained when Nate has been the cause of a sudden change of plans or making us late for something. He doesn't make fun of Nate when he is having a meltdown or exhibiting some strange behavior. When we moved Nate out of the room with Nick, Nick was a little sad. When I asked him why, he told me that he would miss all the conversations that he and Nate would have when they went to bed. Now, you know as well as I do, that Nate never said a word. However, Nick is convinced that Nate was a very active participant in these conversations.
I only hope that when Nick is a teenager, he still thinks that Nate is as awesome as he does now. I hope that peer pressure or outside influences won't tarnish his love for his older brother. Just think what a great place the world would be if everyone thought like Nick.......
Now if I could only get Nick to feel the same way about his little brother........
Friday, February 3, 2012
It's Letter Day
It's Letter Day in St. Louis. Today is the day that incoming Freshman get a letter letting them know which private high school they will go to next year. Nate should be in 8th grade. He should be getting his letter today......not that Tim would agree to private school....but all the same. It's another childhood ritual that my child is not able to participate in.
The kids at school were very excited about it today. They couldn't wait to get home and check the mail. I know that Tim would never agree to send the boys to a private school, but it would be nice to have the option. For the first time I realized that Nate is their age. It's so easy to think he's younger, since, developmentally he is.
Here are more rites of passage that autism has robbed me of:
first boy/girl party
calling a girl for the first time
driving Nate and a date to the movies and either sitting 5 rows behind them or waiting for them in the lobby
teaching Nate to always open the door for girls
watching Nate play football while Tim is his coach
studying and practicing for his driving test
teaching him how to drive a stick shift
looking at collages
studying for finals
helping him with his homework
I knew it would be hard for me when Nate got to be the same age or older than the students I am teaching. Before, I didn't really have anything to measure the amount of divide between Nate and other kids his age. Now that I do, it kinda sucks.
Maybe I should file a civil suit against autism. Can I put a price tag on what autism has taken from us? Is it possible to define your dreams in dollars and cents? Would any amount of money fix my broken heart?
I think I will always be mourning the loss of the child I thought I was going to have.
The kids at school were very excited about it today. They couldn't wait to get home and check the mail. I know that Tim would never agree to send the boys to a private school, but it would be nice to have the option. For the first time I realized that Nate is their age. It's so easy to think he's younger, since, developmentally he is.
Here are more rites of passage that autism has robbed me of:
first boy/girl party
calling a girl for the first time
driving Nate and a date to the movies and either sitting 5 rows behind them or waiting for them in the lobby
teaching Nate to always open the door for girls
watching Nate play football while Tim is his coach
studying and practicing for his driving test
teaching him how to drive a stick shift
looking at collages
studying for finals
helping him with his homework
I knew it would be hard for me when Nate got to be the same age or older than the students I am teaching. Before, I didn't really have anything to measure the amount of divide between Nate and other kids his age. Now that I do, it kinda sucks.
Maybe I should file a civil suit against autism. Can I put a price tag on what autism has taken from us? Is it possible to define your dreams in dollars and cents? Would any amount of money fix my broken heart?
I think I will always be mourning the loss of the child I thought I was going to have.
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