I finally found a house, and the family will be here in a week. I can hardly wait to have everyone here in Ohio with me, and we can get back into our routine again.
I am in need of a routine just as much as they are. The last five weeks have been awful for me - and them - for different reasons, but they are intertwined.
I called today and talked to Spencer, and shared with him some details about the new house. the only thing that he was really concerned about was the door.
The front door.
He could care less that there is a very cool "secret passageway" in his room-to-be that leads to the attic, where I imagine the boys will spend a lot of time hiding from their parents.
He wanted to know what the front door looked like. So, I took a picture and sent it via my phone, and he was satisfied.
It was a simple reminder of how my little man sees and wonders about things. Most boys his age are concerned about the neighborhood, the back yard, the play room, or a new bike.
He simply wanted to know what the door looked like. I can't wait to watch him walk through it, to hold him and the rest of my family again.
I am excited to get back to our daily, boring routine - which the boys in our family so desperately need. Together again, one family, fighting the fight, and raising our children the only way we know how.
One day at a time.
Can't wait to see you Spencer. Can't wait for you to see the door for the first time in person.
Welcome home.
Sunday, November 7, 2010
Thursday, November 4, 2010
Early Detection is Critical
I am blessed to have two children on the spectrum.
With the oldest, we had no experience with autism, and had no idea what we were looking for. I thought it was completely normal that children lined up and organized their matchbox cars by color and type.
I had no idea that other children didn't like the feel of their pants, or that tags in shirts "hurt them".
On the contrary, when Spencer began to show signs of being on the specter, we knew it immediately. We watched him regress over a 72 hour period. That's right - over a long weekend we watched our son, who was only three and speaking in full sentences, regress and by the time the weekend was over, we knew he was on the spectrum.
When I speak to groups about autism awareness, usually I am asked to speak about what I have titled "the first day."
The first day is the day you find out. The day you realize that your world has changed forever.
I have been blessed to have two first days. The second was a lot different than the first.
With Chandler, there was a lot of research, crying, wondering why this happened to our son, and to our family. We had just had our second child, a wonderful little girl, and we wondered aloud - could she also be autistic?
We mourned for a long period of time. We felt lost, wondered if we had done something during the pregnancy to cause this. We simply did not know what to do.
Spencer on the other hand was different. We still mourned, but after crying for ten minutes, we went to work in getting him the early intervention that is so critical.
Every child on the Spectrum is different:
"If you've met one child with autism, you've met one child with autism."
- Stephen Shore, adult with ASD.
ASD impacts three main areas of functioning: communication, socialization and behavior. However, behaviors and functioning can vary widely within and across individuals even if they have the same diagnosis.
John is a seven year old boy who received a medical diagnosis of autism when he was three years old. He does not speak, but uses gestures to make his needs known. When he is not understood, he shows frustration by squealing, throwing himself on the floor and crying. In school, he receives full day instruction in a classroom for children with autism. He can complete simple puzzles and match blocks by color when asked and supervised directly. John does not interact with his peers. He prefers playing alone and does not play with toys in the way they were intended.
Katy is an eight year old girl who was identified by her school evaluation team under that category of autism. After her identification at school, her parents took her to a children's hospital for evaluation where she was diagnosed with Asperger Syndrome. Katy is very verbal and attends a regular second grade classroom. While she can read words at a sixth grade level, her comprehension skills are at a first grade level. Her teachers report that Katy has difficulty interacting with her classmates. She loves to talk about spiders and bugs and has begun her own bug collection. She continually tries to dominate conversations with her peers around the topic of bugs. Katy does not realize that her peers are not interested when they walk away while she is talking.
While both of these examples have ASD, certainly their characteristics in the areas of communication, behavior and socialization vary greatly.
The following is a list of some common behaviors or characteristics you might observe in your child.
Communication:
* Difficulty in expressing needs (may use negative behavior instead of words);
* Laughs, cries or shows distress for reasons not always apparent to others;
* Delayed speech or no speech at all;
* Has difficulty processing language (may not understand and/ or may take longer to respond);
* Echolaic - immediate or delayed repetition of words of another person (or television, radio, etc);
* Not responsive to verbal cues;
Does not use joint attention - showing or sharing something with another person, this is typically demonstrated by using eye gaze and gestures, particularly pointing, for social interaction.
Socialization
* May prefer to be alone or appears aloof;
* Difficulty interacting with other children;
* May not want physical contact - cuddling, touching, hugging;
* Little or no eye contact;
* Difficulty initiating conversation or play with others;
* Acts or speaks in socially inappropriate manner (such as speaking too loudly or for too long).
* Difficulty interpreting facial expressions or body language;
* Difficulty understanding and interpreting emotions (self and others).
Behavior (this is the one I am asked about a lot)
* difficulty transitioning from one activity or settling to another;
* Tantrums or meltdowns;
* Spins and / or lines up objects;
* Inappropriate attachments to objects;
* Frequently walks on tip toes (toe walking);
* Stereotypic or self stimulatory behaviors - repetitive movement of the body or other objects such as hand flapping, rocking, flicking fingers in front of face;
* Restricted and persistent interests;
* Insistence on sameness; resistance to change;
Self injurious behaviors;
Other Areas
* Uneven gross / fine motor skills;
* Sensory processing issues; unusual responses to sensory input;
* Apparent over sensitivity or under sensitivity to pain;
* Noticeable physical over-activity or under-activity;
* Eats limited food choices and / or textures;
* Minimal awareness to physical danger;
* Wandering away.
Occurrence of Autism
The prevalence of ASD is increasing. In 2009, the centers for disease control and prevention and the US Department of health and human services reported the prevalence rate is between 1 in 80 and 1 in 240 with 1 in 110 children in the United States having ASD.
This wide range is the result of differences in the finding of various research studies. Based on these estimates, approximately 24,000 children born in the United States every year (assuming the ratio does not change) will have a diagnosis of ASD. There a re currently approximately 500,000 individuals, aged 0-21 with ASD in this country. ASD is more common that childhood cancer, Down Syndrome and juvenile diabetes combined.
Genetics Research and Autism
There is currently no known cause of ASD. During the past decade, scientists made significant breakthroughs in understanding the genetics of autism. Researchers are now focusing on specific chromosomal regions that may contain autism related genes. This has been accomplished by studying chromosomal abnormalities in individuals with autism and by screen each chromosome for evidence of genes associated with autism.
Current theory among autism genetics researchers supports the idea of "complex" inheritance. This means that multiple genetic factors are likely to be involved and may predispose an individual to develop autism. This theory also includes a role for environmental factors. that is, in addition to having a certain combination of autism related genes, exposure to specific environmental factors may be necessary for autism to develop in some individuals. For instance, if one version of a gene makes a person susceptible to a particular chemical, exposure to that chemical could trigger autism to develop. By focusing on the study of genetic factors and determining theory underlying mechanisms, researchers may be better able to pinpoint environmental factors that contribute to autism.
We need to raise funds. We need to further research. Important work is being done, and we all need to find a way to help and continue this great work.
Resources
Autism Notes: www.autismnotes.com
Autism Speaks: www.autismspeaks.com
Collaborative on Health and Environment
Human Genome Project: www.ornl.gov; www.genome.gov
Autism society of America: www.autism-society.org
Ohio Center for Autism and Low Incidence
Ohio department of education
Autism Society of Ohio
With the oldest, we had no experience with autism, and had no idea what we were looking for. I thought it was completely normal that children lined up and organized their matchbox cars by color and type.
I had no idea that other children didn't like the feel of their pants, or that tags in shirts "hurt them".
On the contrary, when Spencer began to show signs of being on the specter, we knew it immediately. We watched him regress over a 72 hour period. That's right - over a long weekend we watched our son, who was only three and speaking in full sentences, regress and by the time the weekend was over, we knew he was on the spectrum.
When I speak to groups about autism awareness, usually I am asked to speak about what I have titled "the first day."
The first day is the day you find out. The day you realize that your world has changed forever.
I have been blessed to have two first days. The second was a lot different than the first.
With Chandler, there was a lot of research, crying, wondering why this happened to our son, and to our family. We had just had our second child, a wonderful little girl, and we wondered aloud - could she also be autistic?
We mourned for a long period of time. We felt lost, wondered if we had done something during the pregnancy to cause this. We simply did not know what to do.
Spencer on the other hand was different. We still mourned, but after crying for ten minutes, we went to work in getting him the early intervention that is so critical.
Every child on the Spectrum is different:
"If you've met one child with autism, you've met one child with autism."
- Stephen Shore, adult with ASD.
ASD impacts three main areas of functioning: communication, socialization and behavior. However, behaviors and functioning can vary widely within and across individuals even if they have the same diagnosis.
John is a seven year old boy who received a medical diagnosis of autism when he was three years old. He does not speak, but uses gestures to make his needs known. When he is not understood, he shows frustration by squealing, throwing himself on the floor and crying. In school, he receives full day instruction in a classroom for children with autism. He can complete simple puzzles and match blocks by color when asked and supervised directly. John does not interact with his peers. He prefers playing alone and does not play with toys in the way they were intended.
Katy is an eight year old girl who was identified by her school evaluation team under that category of autism. After her identification at school, her parents took her to a children's hospital for evaluation where she was diagnosed with Asperger Syndrome. Katy is very verbal and attends a regular second grade classroom. While she can read words at a sixth grade level, her comprehension skills are at a first grade level. Her teachers report that Katy has difficulty interacting with her classmates. She loves to talk about spiders and bugs and has begun her own bug collection. She continually tries to dominate conversations with her peers around the topic of bugs. Katy does not realize that her peers are not interested when they walk away while she is talking.
While both of these examples have ASD, certainly their characteristics in the areas of communication, behavior and socialization vary greatly.
The following is a list of some common behaviors or characteristics you might observe in your child.
Communication:
* Difficulty in expressing needs (may use negative behavior instead of words);
* Laughs, cries or shows distress for reasons not always apparent to others;
* Delayed speech or no speech at all;
* Has difficulty processing language (may not understand and/ or may take longer to respond);
* Echolaic - immediate or delayed repetition of words of another person (or television, radio, etc);
* Not responsive to verbal cues;
Does not use joint attention - showing or sharing something with another person, this is typically demonstrated by using eye gaze and gestures, particularly pointing, for social interaction.
Socialization
* May prefer to be alone or appears aloof;
* Difficulty interacting with other children;
* May not want physical contact - cuddling, touching, hugging;
* Little or no eye contact;
* Difficulty initiating conversation or play with others;
* Acts or speaks in socially inappropriate manner (such as speaking too loudly or for too long).
* Difficulty interpreting facial expressions or body language;
* Difficulty understanding and interpreting emotions (self and others).
Behavior (this is the one I am asked about a lot)
* difficulty transitioning from one activity or settling to another;
* Tantrums or meltdowns;
* Spins and / or lines up objects;
* Inappropriate attachments to objects;
* Frequently walks on tip toes (toe walking);
* Stereotypic or self stimulatory behaviors - repetitive movement of the body or other objects such as hand flapping, rocking, flicking fingers in front of face;
* Restricted and persistent interests;
* Insistence on sameness; resistance to change;
Self injurious behaviors;
Other Areas
* Uneven gross / fine motor skills;
* Sensory processing issues; unusual responses to sensory input;
* Apparent over sensitivity or under sensitivity to pain;
* Noticeable physical over-activity or under-activity;
* Eats limited food choices and / or textures;
* Minimal awareness to physical danger;
* Wandering away.
Occurrence of Autism
The prevalence of ASD is increasing. In 2009, the centers for disease control and prevention and the US Department of health and human services reported the prevalence rate is between 1 in 80 and 1 in 240 with 1 in 110 children in the United States having ASD.
This wide range is the result of differences in the finding of various research studies. Based on these estimates, approximately 24,000 children born in the United States every year (assuming the ratio does not change) will have a diagnosis of ASD. There a re currently approximately 500,000 individuals, aged 0-21 with ASD in this country. ASD is more common that childhood cancer, Down Syndrome and juvenile diabetes combined.
Genetics Research and Autism
There is currently no known cause of ASD. During the past decade, scientists made significant breakthroughs in understanding the genetics of autism. Researchers are now focusing on specific chromosomal regions that may contain autism related genes. This has been accomplished by studying chromosomal abnormalities in individuals with autism and by screen each chromosome for evidence of genes associated with autism.
Current theory among autism genetics researchers supports the idea of "complex" inheritance. This means that multiple genetic factors are likely to be involved and may predispose an individual to develop autism. This theory also includes a role for environmental factors. that is, in addition to having a certain combination of autism related genes, exposure to specific environmental factors may be necessary for autism to develop in some individuals. For instance, if one version of a gene makes a person susceptible to a particular chemical, exposure to that chemical could trigger autism to develop. By focusing on the study of genetic factors and determining theory underlying mechanisms, researchers may be better able to pinpoint environmental factors that contribute to autism.
We need to raise funds. We need to further research. Important work is being done, and we all need to find a way to help and continue this great work.
Resources
Autism Notes: www.autismnotes.com
Autism Speaks: www.autismspeaks.com
Collaborative on Health and Environment
Human Genome Project: www.ornl.gov; www.genome.gov
Autism society of America: www.autism-society.org
Ohio Center for Autism and Low Incidence
Ohio department of education
Autism Society of Ohio
Monday, November 1, 2010
Understanding Where This Came From
I speak to groups about a variety of topics.
Sometimes I am asked to speak about sports marketing, the team I work for, our upcoming season or just our industry. Sometimes I speak about autism awareness.
I prefer to speak about autism.
When I was in fifth grade, I started a variety of testing. I remember going to hospital after hospital, therapist after therapist.
I was diagnosed with dyslexia, then ADD, and a few other things that I can't remember. Since I don't see words backwards, I was pretty sure that I wasn't dyslexic. ADD? yhea, I have that. What was I talking about again? Just kidding.
As I have mentioned in previous posts, my boys are a lot like me when I was a child. Everything they do reminds me of me.
Where did this come from? Why are my boys on the spectrum? Turns out, it was a diagnosis that I was never told about. I am on the spectrum. Now, everything makes sense.
I see things in pictures - to me, that's normal. Don't you see things like that? No - you don't.
I remember obscure dates and places. I see them in pictures clearly as if they happened yesterday.
I remember having a conversation with my father in his bedroom when I was only 3. I remember a conversation with my mom in our living room when I was 5. Clearly - word for word, and I can see it.
I am obsessed with my profession. Being in professional sports is hard on a family, so a few years ago, I got out. That lasted about six months. I was obsessed with getting back into sports - couldn't stop thinking about it, and did everything I could to get a job.
I work day and night. I live, eat and breathe my job. I am obsessed with sports marketing, and have been since I was.........seven.
I am blessed that I can remember these events in my life. I am blessed with a memory that can recall stats at the drop of a hat. It is also a bit of a curse.
There is so much more.
When you think about the weekend, I see "tall buildings," I don't know why, but this became real for me when Chandler told me that he sees tall buildings when we talk about weekends.
When we watched Temple Grandin together, during the scenes when she "sees" things, Chandler explains to me that he sees the world that way. I didn't say anything, but so do I.
So Chan and Spencer, you are not alone. I made it through this, and so will you.
I have made the decision to seek therapy for the little things that I do which are caused by the disorder - I am obsessive compulsive about a number of things, and that needs some help. There are a few others too, and with this new information I will have the opportunity to correct some of my.......quirks.
This new information will not change who I am. I am a father of who has wonderful sons and daughters. I am a husband who loves his wife (another obsession -- don't think that has anything to do with autism). I am a person who cares deeply about autism awarness, and making sure that not only my children - but all children have an opportunity to have success in life away from home.
Chan and Spencer were given to me for a number of reasons. A diagnosis of my own is only one of them.
I thank them every day for the gifts they give me. I can't wait until we are reunited in Ohio.
Cory Howerton
Sometimes I am asked to speak about sports marketing, the team I work for, our upcoming season or just our industry. Sometimes I speak about autism awareness.
I prefer to speak about autism.
When I was in fifth grade, I started a variety of testing. I remember going to hospital after hospital, therapist after therapist.
I was diagnosed with dyslexia, then ADD, and a few other things that I can't remember. Since I don't see words backwards, I was pretty sure that I wasn't dyslexic. ADD? yhea, I have that. What was I talking about again? Just kidding.
As I have mentioned in previous posts, my boys are a lot like me when I was a child. Everything they do reminds me of me.
Where did this come from? Why are my boys on the spectrum? Turns out, it was a diagnosis that I was never told about. I am on the spectrum. Now, everything makes sense.
I see things in pictures - to me, that's normal. Don't you see things like that? No - you don't.
I remember obscure dates and places. I see them in pictures clearly as if they happened yesterday.
I remember having a conversation with my father in his bedroom when I was only 3. I remember a conversation with my mom in our living room when I was 5. Clearly - word for word, and I can see it.
I am obsessed with my profession. Being in professional sports is hard on a family, so a few years ago, I got out. That lasted about six months. I was obsessed with getting back into sports - couldn't stop thinking about it, and did everything I could to get a job.
I work day and night. I live, eat and breathe my job. I am obsessed with sports marketing, and have been since I was.........seven.
I am blessed that I can remember these events in my life. I am blessed with a memory that can recall stats at the drop of a hat. It is also a bit of a curse.
There is so much more.
When you think about the weekend, I see "tall buildings," I don't know why, but this became real for me when Chandler told me that he sees tall buildings when we talk about weekends.
When we watched Temple Grandin together, during the scenes when she "sees" things, Chandler explains to me that he sees the world that way. I didn't say anything, but so do I.
So Chan and Spencer, you are not alone. I made it through this, and so will you.
I have made the decision to seek therapy for the little things that I do which are caused by the disorder - I am obsessive compulsive about a number of things, and that needs some help. There are a few others too, and with this new information I will have the opportunity to correct some of my.......quirks.
This new information will not change who I am. I am a father of who has wonderful sons and daughters. I am a husband who loves his wife (another obsession -- don't think that has anything to do with autism). I am a person who cares deeply about autism awarness, and making sure that not only my children - but all children have an opportunity to have success in life away from home.
Chan and Spencer were given to me for a number of reasons. A diagnosis of my own is only one of them.
I thank them every day for the gifts they give me. I can't wait until we are reunited in Ohio.
Cory Howerton
Sunday, October 31, 2010
It has been too long
A lot has changed since I have last posted. Sometimes, life gets crazy, and things take a back seat. I promise to not allow that to happen again.
This cause is too important, the impact is too great.
Since my last post, I have accepted a job in Cleveland with the arena football team. I am very excited to be a part of such a great organization, to rebuild a popular brand in a town that loves football.
I have now been here for three weeks, and my family has yet to join me. It is the longest that we have ever been apart, and it is putting a lot of stress on our family - and the children.
We are also leaving behind a wonderful autism society in southeastern Wisconsin, and great schools.
What I have found in my short time in Cleveland, is amazing people - an Autism chapter at both the State and local level that is unbelievable. I am excited to extend my voice to help them raise funds, awareness and help treat children who desperately need it, and provide resources to families who are affected each day.
I have had the opportunity to already interact with the people in Ohio, and their quick action in turning around a meeting with me was more than impressive. I am excited to work with them going forward.
The next step is finding a home for our family in a school district that will take care of the needs of our children. This has been one of the most difficult assignments I have ever undertaken, not to mention I want to make it happen fast - I miss my family.
I will be posting more often - I am going to try once a week. We are going to do some good in Ohio, and I can't wait to get started!
Cory Howerton
This cause is too important, the impact is too great.
Since my last post, I have accepted a job in Cleveland with the arena football team. I am very excited to be a part of such a great organization, to rebuild a popular brand in a town that loves football.
I have now been here for three weeks, and my family has yet to join me. It is the longest that we have ever been apart, and it is putting a lot of stress on our family - and the children.
We are also leaving behind a wonderful autism society in southeastern Wisconsin, and great schools.
What I have found in my short time in Cleveland, is amazing people - an Autism chapter at both the State and local level that is unbelievable. I am excited to extend my voice to help them raise funds, awareness and help treat children who desperately need it, and provide resources to families who are affected each day.
I have had the opportunity to already interact with the people in Ohio, and their quick action in turning around a meeting with me was more than impressive. I am excited to work with them going forward.
The next step is finding a home for our family in a school district that will take care of the needs of our children. This has been one of the most difficult assignments I have ever undertaken, not to mention I want to make it happen fast - I miss my family.
I will be posting more often - I am going to try once a week. We are going to do some good in Ohio, and I can't wait to get started!
Cory Howerton
Wednesday, May 26, 2010
The way I see it...
My wife reminded me of something today.
I see things differently than other people. I am addicted to my work - no obsessed with it. I have spent my entire adult life perfecting my craft and not letting anything get in the way. Well almost anything.
I have a temper that frustrates me, and get enraged when people don't understand what I am trying to articulate. I got so angry a year ago, I went to great lengths to get my contract voided with my former employer - I hated them that much, I irrationally put my career on the line to leave in the middle of the season.
I have a hard time concentrating on a specific task that is not related to work (and even at work, my A.D.D. kicks in and my focus shifts).
My mother used to say "I hope you have a son just like you."
Turns out - I have two.
And that makes me wonder....Am I on the spectrum too? Could it be because of me that my two boys struggle in school, are obsessed with specific tasks and get angry easily? Is it because of me that they make irrational decisions and do things that at the time make sense to them, but in the end make no sense at all?
After talking about it, my wife and I decided that I would see a doctor and be tested. Maybe through this discovery, I will be a better husband and father, a better more engaged manager and employee and be able to help and understand my two boys better.
When my boys do things that people would label as strange, I think "I remember doing that." So it's possible I am taking this journey with them. That I understand more than I thought I did and that they have a little more in common with Dad than they had hoped.
What a journey this is. Just when I think I have learned something that will help them, it helps me. This will help us unlock some answers, and truly know if Autism is genetic, rather than a problem with immunizations.
I promise to write the story about Spencer and his unique way of discovering things, and I promise to be more consistent with my posts. I look forward to updating you with the doctors findings.
Cory Howerton
Father of two amazing boys on the autism spectrum
I see things differently than other people. I am addicted to my work - no obsessed with it. I have spent my entire adult life perfecting my craft and not letting anything get in the way. Well almost anything.
I have a temper that frustrates me, and get enraged when people don't understand what I am trying to articulate. I got so angry a year ago, I went to great lengths to get my contract voided with my former employer - I hated them that much, I irrationally put my career on the line to leave in the middle of the season.
I have a hard time concentrating on a specific task that is not related to work (and even at work, my A.D.D. kicks in and my focus shifts).
My mother used to say "I hope you have a son just like you."
Turns out - I have two.
And that makes me wonder....Am I on the spectrum too? Could it be because of me that my two boys struggle in school, are obsessed with specific tasks and get angry easily? Is it because of me that they make irrational decisions and do things that at the time make sense to them, but in the end make no sense at all?
After talking about it, my wife and I decided that I would see a doctor and be tested. Maybe through this discovery, I will be a better husband and father, a better more engaged manager and employee and be able to help and understand my two boys better.
When my boys do things that people would label as strange, I think "I remember doing that." So it's possible I am taking this journey with them. That I understand more than I thought I did and that they have a little more in common with Dad than they had hoped.
What a journey this is. Just when I think I have learned something that will help them, it helps me. This will help us unlock some answers, and truly know if Autism is genetic, rather than a problem with immunizations.
I promise to write the story about Spencer and his unique way of discovering things, and I promise to be more consistent with my posts. I look forward to updating you with the doctors findings.
Cory Howerton
Father of two amazing boys on the autism spectrum
Thursday, May 13, 2010
Transitions
We're moving.
Change is not good.
As we prepare to take our boys out of their schools and a place where they get fantastic services, I think a lot about how this is going to affect them short term.
About ten months ago, I left a job I hated to start my own company, and recently on a referral from one of my clients, I was offered an opportunity to pursue a dream - so I took it.
We are moving to a real city, with larger buildings, and things to do. A city with major league teams and summer activities that are not centered around corn.
I firmly believe that the boys are going to love the move, once we get there and get settled. I know that when they start school again next year, while it will be different, they will do fine. Making friends is always hard, but doing so when you are autistic is going to be a challenge - but as with everything else we do, we will get through it.
These boys are hard. Being a parent of one autistic son is difficult enough, but two is un-real.
FIRST DAYS
When I speak to groups of autistic parents, especially those who have just found out that their child is on the autism spectrum, we talk about the "first day."
Your life changes when you get the diagnosis. In essence, it starts over. The first day is the hardest, and while it seems like it doesn't get any easier, it will. At least in most cases.
I meet people all the time that are having a difficult time with their autistic child. Sometimes the behavior is so out of control that parents need help from doctors, local agencies or other resources that are available - including medication.
Remember that you are their voice - you are their advocate - you are the person that loves them. Fight for them, and when you are tired - fight some more. Call the doctors a hundred times, and never give up. They are counting on you and if they will ever have a chance to be independent as an adult, you must fight for them now.
They analyze everything in a different way. We will never fully understand the challenges they face each day. But we must be strong, even in difficult times, and it will be difficult.
Some people will shun you. You might lose some friends. Nothing changes the fact that you are a great parent, with an amazing gift of a child. Never lose sight of that.
NEXT: Interesting interpretations of a young autistic child.
Change is not good.
As we prepare to take our boys out of their schools and a place where they get fantastic services, I think a lot about how this is going to affect them short term.
About ten months ago, I left a job I hated to start my own company, and recently on a referral from one of my clients, I was offered an opportunity to pursue a dream - so I took it.
We are moving to a real city, with larger buildings, and things to do. A city with major league teams and summer activities that are not centered around corn.
I firmly believe that the boys are going to love the move, once we get there and get settled. I know that when they start school again next year, while it will be different, they will do fine. Making friends is always hard, but doing so when you are autistic is going to be a challenge - but as with everything else we do, we will get through it.
These boys are hard. Being a parent of one autistic son is difficult enough, but two is un-real.
FIRST DAYS
When I speak to groups of autistic parents, especially those who have just found out that their child is on the autism spectrum, we talk about the "first day."
Your life changes when you get the diagnosis. In essence, it starts over. The first day is the hardest, and while it seems like it doesn't get any easier, it will. At least in most cases.
I meet people all the time that are having a difficult time with their autistic child. Sometimes the behavior is so out of control that parents need help from doctors, local agencies or other resources that are available - including medication.
Remember that you are their voice - you are their advocate - you are the person that loves them. Fight for them, and when you are tired - fight some more. Call the doctors a hundred times, and never give up. They are counting on you and if they will ever have a chance to be independent as an adult, you must fight for them now.
They analyze everything in a different way. We will never fully understand the challenges they face each day. But we must be strong, even in difficult times, and it will be difficult.
Some people will shun you. You might lose some friends. Nothing changes the fact that you are a great parent, with an amazing gift of a child. Never lose sight of that.
NEXT: Interesting interpretations of a young autistic child.
Thursday, April 8, 2010
I didn't ask for this
I didn't ask for this.
I didn't ask to be a father of two Autistic Boys, and three little girls that don't understand why their brothers act the way they do.
I didn't ask to be the father of a talented athlete who has become an amazing goalkeeper, but that I can't put on a team because he can't emotionally handle the ups and downs of a sporting event without an emotional outburst.
I didn't ask for a three year old who is up every night from 3-4:30, and I certainly didn't ask for that as our quality time.
I didn't ask for any of this, but I wouldn't change it. These two young boys were sent to me for a reason, and no matter how busy I get, or what path life takes me, they have become my cause. Rather than saying why me - I said "how can we fix this?"
Where the divorce rate of parents who have an autistic child is extremely high, it is a unifying cause for our family.
As parents we don't choose this - it chose us. Fight the fight, because you are the only one who will for your child. Nobody else has your child's best interest in mind other than you - speak loud, get involved and chose to fight.
I didn't ask for this. I'm just going to beat it.
I didn't ask to be a father of two Autistic Boys, and three little girls that don't understand why their brothers act the way they do.
I didn't ask to be the father of a talented athlete who has become an amazing goalkeeper, but that I can't put on a team because he can't emotionally handle the ups and downs of a sporting event without an emotional outburst.
I didn't ask for a three year old who is up every night from 3-4:30, and I certainly didn't ask for that as our quality time.
I didn't ask for any of this, but I wouldn't change it. These two young boys were sent to me for a reason, and no matter how busy I get, or what path life takes me, they have become my cause. Rather than saying why me - I said "how can we fix this?"
Where the divorce rate of parents who have an autistic child is extremely high, it is a unifying cause for our family.
As parents we don't choose this - it chose us. Fight the fight, because you are the only one who will for your child. Nobody else has your child's best interest in mind other than you - speak loud, get involved and chose to fight.
I didn't ask for this. I'm just going to beat it.
Saturday, February 20, 2010
Temple Grandin
I had the opportunity two weeks ago to watch the HBO movie Temple Grandin, based on the life of an autistic woman who was diagnosed with the disorder in the 1960's, when it was more popular to institutionalize these children then intervene.
I had the honor of watching this movie with my son Chandler- who, throughout the movie made statements like, "Daddy, that's how I feel," or "that's how I see things."
It was a true learning experience for our family. I encourage anyone who has a child on the spectrum to watch this great movie. It is inspiring and educational.
Recently Temple visited with the people at PSU, and this interview is amazing. It is lengthy, but I couldn't turn it off. It really offers insight from someone who can articulate what having this disorder is like.
It can be found here: http://conversations.psu.edu/episodes/temple_grandin
I would recommend sharing this with anyone who is not educated about the Spectrum - or parents who are just starting on this journey.
I had the honor of watching this movie with my son Chandler- who, throughout the movie made statements like, "Daddy, that's how I feel," or "that's how I see things."
It was a true learning experience for our family. I encourage anyone who has a child on the spectrum to watch this great movie. It is inspiring and educational.
Recently Temple visited with the people at PSU, and this interview is amazing. It is lengthy, but I couldn't turn it off. It really offers insight from someone who can articulate what having this disorder is like.
It can be found here: http://conversations.psu.edu/episodes/temple_grandin
I would recommend sharing this with anyone who is not educated about the Spectrum - or parents who are just starting on this journey.
Thursday, February 18, 2010
Pants and Shoes!
I would like to start this by saying this doesn't happen every day - but it does.
"My Pants HURT!!!!," screams Chandler from his upstairs bedroom.
"My shoelaces are crooked," yells Spencer after putting on his new light up Spiderman shoes.
Any efforts to assist with the problem cause further blow ups and issues.
I don't fully understand the sensory issues that come with Asperger's.
Chandler has about 40 pairs of pants. On any given day, one type of pant is good, and all of the others can just be thrown away. Pants that were perfect yesterday no longer work for him, and the battle in the morning begins, usually around 7:15.
About a year ago, Spencer was infatuated with the color green. Everything had to be green - so we stopped what we were doing, found some very hard to find Green Nike shoes, to which he wore for about three days before everything had to be blue.
We have to hold our sleeves when we put our coats on, because if the sleeve bunches in the coat sleeve - the day ends right there. Socks have to be seamless or the seams have to be aligned perfectly with the top of their toes, or you have just wasted the fifteen minutes it took you to convince them that it's okay to wear socks.
Last night my wife took Chandler to buy some new jeans. He didn't need the jeans, but there was a good sale, and he has been in "jeans mode" lately - so they went to the mall and picked out a couple pairs of pants.
Something happened between last night and this morning that caused the same pair of pants that worked last night to no longer be a suitable option for Chandler. He started the day by screaming at both of us about it.
I have to admit, I raised my voice at him, partly because I was frustrated, but mostly because he could not hear me over his yelling and screaming. After five minutes of yelling at me, he looked at me and SCREAMED: "DON'T YELL AT ME!"
Honestly that didn't help how I was feeling about the situation. I am a little OCD myself, and one of the things I am obsessive about is being late. I can't be late anywhere. I hate it. His tirade was going to make him late for school, and leave me in the office to explain why he was late, although now the nice women who work in the office understand the word "meltdown."
I never handle these situations very well, because I don't yet fully understand it. Maybe I never will. There are days that I am better with the boys in the morning than others, today wasn't one of those days.
I finally decided to help where I could and allow them to try and figure this out on their own. Chandler found pants that he wanted to wear, and Spencer was fine with his shoes after about a half hour. Then we had to battle the "I don't want to go to school," issue - but that's a topic for another day.
As someone who is an analytical thinker and a problem solver, it's hard for me to not understand what my boys go through everyday with something as easy as pants and shoes. This is one area of growth that I absolutely need help with. I never approach it the right way, and maybe because of the disorder there is no right answer. Maybe the answer is I need to be more flexible and understand that we might have to go through 39 other pairs of pants before we find the right one for the day - and tomorrow, all of the ones that didn't work yesterday might be perfect.
My next post will be about squeezing tight - it really does work.
Cory Howerton
"My Pants HURT!!!!," screams Chandler from his upstairs bedroom.
"My shoelaces are crooked," yells Spencer after putting on his new light up Spiderman shoes.
Any efforts to assist with the problem cause further blow ups and issues.
I don't fully understand the sensory issues that come with Asperger's.
Chandler has about 40 pairs of pants. On any given day, one type of pant is good, and all of the others can just be thrown away. Pants that were perfect yesterday no longer work for him, and the battle in the morning begins, usually around 7:15.
About a year ago, Spencer was infatuated with the color green. Everything had to be green - so we stopped what we were doing, found some very hard to find Green Nike shoes, to which he wore for about three days before everything had to be blue.
We have to hold our sleeves when we put our coats on, because if the sleeve bunches in the coat sleeve - the day ends right there. Socks have to be seamless or the seams have to be aligned perfectly with the top of their toes, or you have just wasted the fifteen minutes it took you to convince them that it's okay to wear socks.
Last night my wife took Chandler to buy some new jeans. He didn't need the jeans, but there was a good sale, and he has been in "jeans mode" lately - so they went to the mall and picked out a couple pairs of pants.
Something happened between last night and this morning that caused the same pair of pants that worked last night to no longer be a suitable option for Chandler. He started the day by screaming at both of us about it.
I have to admit, I raised my voice at him, partly because I was frustrated, but mostly because he could not hear me over his yelling and screaming. After five minutes of yelling at me, he looked at me and SCREAMED: "DON'T YELL AT ME!"
Honestly that didn't help how I was feeling about the situation. I am a little OCD myself, and one of the things I am obsessive about is being late. I can't be late anywhere. I hate it. His tirade was going to make him late for school, and leave me in the office to explain why he was late, although now the nice women who work in the office understand the word "meltdown."
I never handle these situations very well, because I don't yet fully understand it. Maybe I never will. There are days that I am better with the boys in the morning than others, today wasn't one of those days.
I finally decided to help where I could and allow them to try and figure this out on their own. Chandler found pants that he wanted to wear, and Spencer was fine with his shoes after about a half hour. Then we had to battle the "I don't want to go to school," issue - but that's a topic for another day.
As someone who is an analytical thinker and a problem solver, it's hard for me to not understand what my boys go through everyday with something as easy as pants and shoes. This is one area of growth that I absolutely need help with. I never approach it the right way, and maybe because of the disorder there is no right answer. Maybe the answer is I need to be more flexible and understand that we might have to go through 39 other pairs of pants before we find the right one for the day - and tomorrow, all of the ones that didn't work yesterday might be perfect.
My next post will be about squeezing tight - it really does work.
Cory Howerton
Sunday, February 14, 2010
Away From Home
I travel a lot for business, so whenever possible, I like them to join me on various trips. This weekend, we were fortunate enough to only be two hours from home, and they kids are out of school on Monday - so we made it a family weekend in a Chicago suburb.
It was a tough weekend.
It seemed that Chandler had a meltdown at every turn and Spencer decided to join him.
On any given day, one of them might be frustrated, upset, or melting down. Rarely do we have the pleasure of both of them doing it at the same time, let alone all weekend.
My wife reminded me a number of times this weekend that we live in their world. This is something I talk about a lot, but when you're in the moment, it's hard to remember.
What I found most frustrating was when there was an issue - and there were many - we were able to provide solutions to the problem that make perfect sense to you and I. But simply stating the solution to an autistic child is sometimes useless. I found that when they were rejecting the solutions, I was getting frustrated - no mad - because they would not listen to reason.
I need to be more patient. It is only through patience and understanding that I will truly be a good father to these amazing boys. I learned something this weekend, even if it was frustrating and even maddening. I am grateful for the lessons learned during a long weekend away from home.
Cory Howerton
It was a tough weekend.
It seemed that Chandler had a meltdown at every turn and Spencer decided to join him.
On any given day, one of them might be frustrated, upset, or melting down. Rarely do we have the pleasure of both of them doing it at the same time, let alone all weekend.
My wife reminded me a number of times this weekend that we live in their world. This is something I talk about a lot, but when you're in the moment, it's hard to remember.
What I found most frustrating was when there was an issue - and there were many - we were able to provide solutions to the problem that make perfect sense to you and I. But simply stating the solution to an autistic child is sometimes useless. I found that when they were rejecting the solutions, I was getting frustrated - no mad - because they would not listen to reason.
I need to be more patient. It is only through patience and understanding that I will truly be a good father to these amazing boys. I learned something this weekend, even if it was frustrating and even maddening. I am grateful for the lessons learned during a long weekend away from home.
Cory Howerton
Wednesday, February 10, 2010
Progress Not Perfection
It's never going to be perfect.
As a profession, I consult major and minor league sports teams on a variety of disciplines - ticket and sponsorship sales, game operations, staffing, etc.
I was in a meeting last week with one client and we were talking about game operations and the mistakes that are made throughout a two and a half hour block of time, where there are many variables to the "show". It's not like a Disney show, or another traveling performance that does the same thing, night in and night out for 150 dates in 60 different cities. The professional sports experience - if it's a good one - changes from game to game, and every night there is a mistake made.
The key to a successful event is - do the fans notice?
I shared with this team that there would never be a "perfect show". It might be as simple as a member of the dance teams misses a step, or something as dramatic as a microphone not working or the lights not coming back on after introductions.
The idea is to make progress every night- the next show is better than the last, we learn from our experiences and build upon them for success.
The same goes for my two boys.
I mentioned in my previous post that I felt the teachers were holding Chandler back. They were giving him milestones to hit, and when he would accomplish those goals, he would not be met with reward, but rather more objectives.
During subsequent conversations with the school staff, they conveyed to me that they were looking for Chandler to accomplish these tasks perfectly (or close to it), and he was not meeting those expectations, and thus they were slowing his integration.
There are many problems with this stance, but the most important thing to note here is none of the issues were academic, but rather they were more about social interaction.
Chandler does much better in social situations when he is around children who are well behaved. He tends to follow before he leads, so when he sees bad behavior, he emulates it. When others are being good, he follows suit there too.
Since he was not being integrated, he continued to emulate the behavior of the other kids in the B.D. room. One time, another kid hit Chandler, and when Chandler responded in kind, he was punished, and he could not understand why.
I shared with them that with children on the Autism spectrum, we needed to strive for progress every day, but to never expect perfection. Chandler is and emotional but driven young man. He wants more than anything to be integrated full time into his general education classroom, and he doesn't feel like he is getting a chance.
With Autistic children, if you give them a goal and they achieve it - you MUST then give them the promised reward, or they feel as if they had failed in some way.
I am not an educator, but I am an expert in Chandler. I know that he is making progress every day - but that if I expect perfection, and try to make Chandler live up to that standard, ultimately we will be disappointed.
I also think it's important to share that while in first grade, we successfully integrated Chandler into his general education classroom for 90% of the day, but because of his IEP, he was required to start this school year in the behavioral disorder room. We were promised this transition would take only two weeks, and it's now January, and we still struggle with getting him time with his regular teacher.
As a lesson, when you have your IEP review at the end of the school year, think ahead. Think about the progress you have made with your child and how that will impact the following school year.
More importantly - celebrate the progress, each and every day. We are taking little steps, but they are steps, and I am a better Father because I live in Chandler and Spencers world.
Cory Howerton
As a profession, I consult major and minor league sports teams on a variety of disciplines - ticket and sponsorship sales, game operations, staffing, etc.
I was in a meeting last week with one client and we were talking about game operations and the mistakes that are made throughout a two and a half hour block of time, where there are many variables to the "show". It's not like a Disney show, or another traveling performance that does the same thing, night in and night out for 150 dates in 60 different cities. The professional sports experience - if it's a good one - changes from game to game, and every night there is a mistake made.
The key to a successful event is - do the fans notice?
I shared with this team that there would never be a "perfect show". It might be as simple as a member of the dance teams misses a step, or something as dramatic as a microphone not working or the lights not coming back on after introductions.
The idea is to make progress every night- the next show is better than the last, we learn from our experiences and build upon them for success.
The same goes for my two boys.
I mentioned in my previous post that I felt the teachers were holding Chandler back. They were giving him milestones to hit, and when he would accomplish those goals, he would not be met with reward, but rather more objectives.
During subsequent conversations with the school staff, they conveyed to me that they were looking for Chandler to accomplish these tasks perfectly (or close to it), and he was not meeting those expectations, and thus they were slowing his integration.
There are many problems with this stance, but the most important thing to note here is none of the issues were academic, but rather they were more about social interaction.
Chandler does much better in social situations when he is around children who are well behaved. He tends to follow before he leads, so when he sees bad behavior, he emulates it. When others are being good, he follows suit there too.
Since he was not being integrated, he continued to emulate the behavior of the other kids in the B.D. room. One time, another kid hit Chandler, and when Chandler responded in kind, he was punished, and he could not understand why.
I shared with them that with children on the Autism spectrum, we needed to strive for progress every day, but to never expect perfection. Chandler is and emotional but driven young man. He wants more than anything to be integrated full time into his general education classroom, and he doesn't feel like he is getting a chance.
With Autistic children, if you give them a goal and they achieve it - you MUST then give them the promised reward, or they feel as if they had failed in some way.
I am not an educator, but I am an expert in Chandler. I know that he is making progress every day - but that if I expect perfection, and try to make Chandler live up to that standard, ultimately we will be disappointed.
I also think it's important to share that while in first grade, we successfully integrated Chandler into his general education classroom for 90% of the day, but because of his IEP, he was required to start this school year in the behavioral disorder room. We were promised this transition would take only two weeks, and it's now January, and we still struggle with getting him time with his regular teacher.
As a lesson, when you have your IEP review at the end of the school year, think ahead. Think about the progress you have made with your child and how that will impact the following school year.
More importantly - celebrate the progress, each and every day. We are taking little steps, but they are steps, and I am a better Father because I live in Chandler and Spencers world.
Cory Howerton
Wednesday, February 3, 2010
Don't get pushed around
This note is for any parent of an autistic child who meets with the child's school regularly.
We meet with our sons school on a regular basis. Unfortunately most of the meetings are at our request, and they are to hold the teachers and administrators accountable for the education of my son. If you are an administrator or teacher -please just do what you say you are going to do and then parents like me won't get involved.
It started with an IEP meeting at the beginning of the school year. It was important to us that Chandler continue his integration into his general education classroom (a process that we started last year,and he did very well with).
We were told that because he had an IEP that he could not begin the year in his general education class and that we would have a plan within the first 20 days of school to begin integration.
20 days came, and went. 30 days came and went. 45 days then came and went. Time after time we were told that he had to meet specific standards to begin integration. The problem with that is, every time he hit those milestones, they put more obstacles in his way. We called another meeting where we wanted to comb through his IEP thoroughly.
When my wife brought out the document, a teacher quickly grabbed it from her (there were five members of the staff involved in this meeting), and said; "we only need to concentrate on page 35 that is the important page."
Strange, I thought the whole document was important.
At this meeting, I demanded that we have a plan and timeline in place to integrate him into his classroom. We came up with a plan, I asked for a weekly progress report to be emailed to me (this was in December, and I have yet to receive one), and that integration was to become more frequent as time goes on.
Over the next few days, Chandler came home to tell me that his teachers were telling how much more difficult it was going to be in his general education classroom, and that he would frequently become frustrated.
Of course he was already nervous. Because of the time that was wasted in not transitioning him, friendships have already been made, kids know who they play with at recess and who they eat lunch with. He knows it's going to be a challenge - and they are not helping.
Turns out, the school benefits financially if he stays in the B.D. program - and as much as I would hate to believe that their incompetence is drive by money, I can't believe that any one group of people are that careless or stupid to hold a child back when every therapist in his life (and there are many) are telling us that he needs to integrate.
Another meeting tomorrow and Friday.
Bottom line - stand up for your child, be their advocate - you are all they have. If the school doesn't listen - speak louder - get an IEP advocate, do everything in your power. We owe it to them.
Cory Howerton
We meet with our sons school on a regular basis. Unfortunately most of the meetings are at our request, and they are to hold the teachers and administrators accountable for the education of my son. If you are an administrator or teacher -please just do what you say you are going to do and then parents like me won't get involved.
It started with an IEP meeting at the beginning of the school year. It was important to us that Chandler continue his integration into his general education classroom (a process that we started last year,and he did very well with).
We were told that because he had an IEP that he could not begin the year in his general education class and that we would have a plan within the first 20 days of school to begin integration.
20 days came, and went. 30 days came and went. 45 days then came and went. Time after time we were told that he had to meet specific standards to begin integration. The problem with that is, every time he hit those milestones, they put more obstacles in his way. We called another meeting where we wanted to comb through his IEP thoroughly.
When my wife brought out the document, a teacher quickly grabbed it from her (there were five members of the staff involved in this meeting), and said; "we only need to concentrate on page 35 that is the important page."
Strange, I thought the whole document was important.
At this meeting, I demanded that we have a plan and timeline in place to integrate him into his classroom. We came up with a plan, I asked for a weekly progress report to be emailed to me (this was in December, and I have yet to receive one), and that integration was to become more frequent as time goes on.
Over the next few days, Chandler came home to tell me that his teachers were telling how much more difficult it was going to be in his general education classroom, and that he would frequently become frustrated.
Of course he was already nervous. Because of the time that was wasted in not transitioning him, friendships have already been made, kids know who they play with at recess and who they eat lunch with. He knows it's going to be a challenge - and they are not helping.
Turns out, the school benefits financially if he stays in the B.D. program - and as much as I would hate to believe that their incompetence is drive by money, I can't believe that any one group of people are that careless or stupid to hold a child back when every therapist in his life (and there are many) are telling us that he needs to integrate.
Another meeting tomorrow and Friday.
Bottom line - stand up for your child, be their advocate - you are all they have. If the school doesn't listen - speak louder - get an IEP advocate, do everything in your power. We owe it to them.
Cory Howerton
Friday, January 29, 2010
Emotions
I don't know how to deal with them. The new emotional outbursts that Chandler has when he gets frustrated and decides to just cry and cry.
As Father, you want to fix the problem. No matter the issue, when I get down on Chandler's level and try to talk to him about whatever the issue is - he now refuses to talk about it, instead he decides to continue crying and letting out all of this raw emotion. It's taking a toll.
It's hard to go in public with such unpredictable behavior. When these things happen at the mall or at a restaurant, other people don't understand, and they assume that my wife and I are just bad parents.
Honestly, I have stopped caring what other people think. I figure if we all live in Chandler's world, instead of him living in ours - those people can take a hike.
What I do know is Chandler's feelings - justifiable or not - are real. His emotion is real, and I need to find a way to both cope and help him better. So far, I'm failing at both.
Cory Howerton
As Father, you want to fix the problem. No matter the issue, when I get down on Chandler's level and try to talk to him about whatever the issue is - he now refuses to talk about it, instead he decides to continue crying and letting out all of this raw emotion. It's taking a toll.
It's hard to go in public with such unpredictable behavior. When these things happen at the mall or at a restaurant, other people don't understand, and they assume that my wife and I are just bad parents.
Honestly, I have stopped caring what other people think. I figure if we all live in Chandler's world, instead of him living in ours - those people can take a hike.
What I do know is Chandler's feelings - justifiable or not - are real. His emotion is real, and I need to find a way to both cope and help him better. So far, I'm failing at both.
Cory Howerton
Monday, January 25, 2010
Sleep Is A Premium
When you have a child diagnosed with Autism, there is no laundry list of things that are going to happen from that point forward. Most cases are unique and require a different level of treatment to overcome the varying circumstances in each child.
I am learning that the one universal issue is sleep - or lack of sleep - associated with being on the spectrum.
Last night all of the kids went to bed on time and it was pretty quiet in the house for a while - something we don't get a lot of frankly. Melinda went to bed around 11- and I had some work to do in preparation for my travels this week to visit a client.
Around midnight, Spencer (3) came downstairs and wanted something to drink. I responded to his request and then carried him to bed. I went back to my tasks in the home office when he re-appeared a few minutes later. Once again, I took him back to his bed and thought we were done for the night. During this little exchange, Chandler (8) also woke up - presenting another challenge - he was frustrated and told me on a couple of occasions that he just wanted to "scream".
Once I got Chan under control, I went back downstairs to finish what I was working on and head to bed. Once again, the little footsteps of a cute and not so tired three year old came bouncing down the stairs. This time, it was pretty clear that he was up - and so was I - for the foreseeable future.
We cuddled on the couch and watched a movie until around 2:00 am. Finally asleep, I made the decision to camp out with him in the living room to avoid waking anyone else up in the house. I fell a sleep around 3:00 - with a 7:00 wake up call. Needless to say, Spencer didn't get up to go to school this morning - Melinda took him later in the day.
Sleep in our house is at a premium. Lately, Aly (6) has been showing signs of not able to sleep, and with the two boys needing medication to get to sleep (Chandler has a prescription and Spencer gets a small dose of Melatonin each night), it can sometimes feel like we only get a few minutes of sleep each night.
I think the lack of sleep is one of the most frustrating things associated with Autism. I used to get very upset - but now I have changed my thought process to understand that this is simply one on one time with each of the boys that I would not normally have. While I would prefer this time happen in the afternoon versus the middle of the night - it's still time with them.
So, feel free to text me if you are up in the middle of the night - there is a good chance that I will be too.
Cory Howerton
I am learning that the one universal issue is sleep - or lack of sleep - associated with being on the spectrum.
Last night all of the kids went to bed on time and it was pretty quiet in the house for a while - something we don't get a lot of frankly. Melinda went to bed around 11- and I had some work to do in preparation for my travels this week to visit a client.
Around midnight, Spencer (3) came downstairs and wanted something to drink. I responded to his request and then carried him to bed. I went back to my tasks in the home office when he re-appeared a few minutes later. Once again, I took him back to his bed and thought we were done for the night. During this little exchange, Chandler (8) also woke up - presenting another challenge - he was frustrated and told me on a couple of occasions that he just wanted to "scream".
Once I got Chan under control, I went back downstairs to finish what I was working on and head to bed. Once again, the little footsteps of a cute and not so tired three year old came bouncing down the stairs. This time, it was pretty clear that he was up - and so was I - for the foreseeable future.
We cuddled on the couch and watched a movie until around 2:00 am. Finally asleep, I made the decision to camp out with him in the living room to avoid waking anyone else up in the house. I fell a sleep around 3:00 - with a 7:00 wake up call. Needless to say, Spencer didn't get up to go to school this morning - Melinda took him later in the day.
Sleep in our house is at a premium. Lately, Aly (6) has been showing signs of not able to sleep, and with the two boys needing medication to get to sleep (Chandler has a prescription and Spencer gets a small dose of Melatonin each night), it can sometimes feel like we only get a few minutes of sleep each night.
I think the lack of sleep is one of the most frustrating things associated with Autism. I used to get very upset - but now I have changed my thought process to understand that this is simply one on one time with each of the boys that I would not normally have. While I would prefer this time happen in the afternoon versus the middle of the night - it's still time with them.
So, feel free to text me if you are up in the middle of the night - there is a good chance that I will be too.
Cory Howerton
Sunday, January 24, 2010
Weekends
Weekends can be tough.
In a world filled with total structure like autistic children need, Saturday and Sunday take them completely out of the regular school day routine they are used to.
Anytime we have a transition, there are challenges. Chandler was very emotional this weekend, crying at times that would not necessarily be appropriate to cry for a child. His feelings were hurt easily and that can at times disrupt our home - and frustrate a Dad who just wants to help and understand.
Spencer showed me he has anger issues now - this is relatively new for him. At one point he was going to "hit me" if I didn't put his newest obsession - Star Trek - into the DVD Player.
I learn something new every day - and this journey has just begun. The thing that we need to be most mindful of is not to reverse discriminate against any of the kids.
What do I mean by that?
We spend so much time trying to cater to and figure the boys out, that at times, the girls accomplishments become commonplace. At the same time, we need to recognize that when the girls accomplish something that they boys have not yet - it's ok to praise them, but we must strike the balance to not hurt the feelings of the boys.
We have five great kids. This weekend was spent together, playing and learning. What a blessing they all are. Even in the tough times.
Cory Howerton
In a world filled with total structure like autistic children need, Saturday and Sunday take them completely out of the regular school day routine they are used to.
Anytime we have a transition, there are challenges. Chandler was very emotional this weekend, crying at times that would not necessarily be appropriate to cry for a child. His feelings were hurt easily and that can at times disrupt our home - and frustrate a Dad who just wants to help and understand.
Spencer showed me he has anger issues now - this is relatively new for him. At one point he was going to "hit me" if I didn't put his newest obsession - Star Trek - into the DVD Player.
I learn something new every day - and this journey has just begun. The thing that we need to be most mindful of is not to reverse discriminate against any of the kids.
What do I mean by that?
We spend so much time trying to cater to and figure the boys out, that at times, the girls accomplishments become commonplace. At the same time, we need to recognize that when the girls accomplish something that they boys have not yet - it's ok to praise them, but we must strike the balance to not hurt the feelings of the boys.
We have five great kids. This weekend was spent together, playing and learning. What a blessing they all are. Even in the tough times.
Cory Howerton
Saturday, January 23, 2010
Obsession
We are all passionate about something. Some might even call you obsessed over whatever that "thing" is for you personally.
One of the natural "side effects" of having children on the Autism spectrum, specifically with Aspergers is that sometimes they become fantastic doctors, lawyers, astronauts or teachers. They focus on one thing their entire life and become great at it. They study it day and night, they can't get enough of it and just when you think that is all they can know - there is more.
As a child, the focus is usually a little more broad. Kids enjoy playing a variety of different games, and their imagination takes them to some amazing places.
Chandler and Spencer are both different, but we notice a lot of the same characteristics in Spencer that we saw in Chandler when he was little (which was the primary reason that we were able to get Spencer early intervention).
Power Rangers
Currently, Spencer's focus is Power Rangers. Chandler went through a Power Ranger obsession when he was about Spencer's age, and we had to buy every single Power Ranger toy and movie available (should of held on to that stuff).
This morning, I walked into Spencer's room and noticed that he was playing with every Power Ranger he had. The interesting part of his play was that he had lined each of them up by type of Ranger and then color. Don't attempt to move one of the Rangers out of place, it will destroy our whole day. You see, Obsessive Compulsiveness is a part of the disorder.
Chandler has become attached to Star Wars and soccer. He has also become very good at Math - and that has become his primary focus in school. The problem with that is, of course, other areas of study have suffered, and we work hard every day to try to keep him on track to move to the next grade.
I have learned that their obsession is their passion. That while it is not always the perfect situation that we have to learn to cater to whatever the current obsession is, allow them to embrace it - and hopefully there is some value to it. Spencer - once a child who was recessing and not speaking, now can engage in a month long conversation about the Red Ranger, his real name and favorite hobby.
Allowing him to focus on his obsession has helped him formulate complicated thoughts and free play scenarios.
One of the things that I have had to learn through all of this is pretty simple. I live in their world, they don't live in ours. They see things completely different. Their level of focus on specific items or tasks might not align with the rest of the world. That's OK - it has taken me almost 8 years to figure this out, but our lives are so much easier now because of it.
While we have to consistently adapt to the needs of the boys, I know that they will be better off because we do. And, I have even learned to like Power Rangers - even if I have seen every movie 1,000 times (a conservative estimate).
Sincerely,
Cory Howerton
Father of Five
Two On The Autism Spectrum
Friday, January 22, 2010
Great Night Of Fundraising
One of the things that I have been able to do is tie my professional life to my Autism fight.
Last July, with the help of a local minor league baseball team, I was able to raise over $2,000 for Autism awareness in the Quad Cities. Last week, we duplicated that effort with a client of mine - the Rockford Rampage of the MISL.
Fans flocked to the bidding tables to win the special Autism awareness jerseys that the team wore, but I had something happen that night that showed the real reason for the fundraiser.
As the team came back on to the field after half time, they throw frisbees into the stand, courtesy of a local sponsor. One of the players picked my son out of the crowd and attempted to throw one to my son - it didn't quite get to him, and another person got it.
Chandler was devistated, and began to have a meltdown in the arena. The player went to the bench, got a soccer ball, and came back to give it to Chandler. This changed the tone of the evening to say the least.
I then had to bid on this players jersey - and we won it. Chandler wears it everywhere and loves to show off the ball, in which the player signed "to Chandler, my best fan."
Following the game, all of the jersey winners got to take the shirt right off the players back on the field. This player spent ten minutes talking with Chandler - he will never fully understand the impact he made on the life of a young autistic boy.
We have our challenges - but I would not have it any other way. I am the proud father of two Autistic boys, and they were sent to me for a reason. While the days may seem long, the journey is an incredible learning experience and I am so grateful for what they teach me.
What Is Autism?
As I begin this journey to document what happens in our daily lives, I thought it was important to answer the question that I get almost every day, "What is Autism?"
This is re-printed from www.autismspeaks.org.
What is Autism?
What is Autism?
Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder – Not
Otherwise Specified), Asperger's Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders.
How common is Autism?
Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Government statistics suggest the prevalence rate of autism is increasing 10-17 percent annually. There is not established explanation for this increase, although improved diagnosis and environmental influences are two reasons often considered. Studies suggest boys are more likely than girls to develop autism and receive the diagnosis three to four times more frequently. Current estimates are that in the United States alone, one out of 70 boys is diagnosed with autism.
What causes Autism?
The simple answer is we don't know. The vast majority of cases of autism are idiopathic, which means the cause is unknown.
The more complex answer is that just as there are different levels of severity and combinations of symptoms in autism, there are probably multiple causes. The best scientific evidence available to us today points toward a potential for various combinations of factors causing autism – multiple genetic components that may cause autism on their own or possibly when combined with exposure to as yet undetermined environmental factors. Timing of exposure during the child's development (before, during or after birth) may also play a role in the development or final presentation of the disorder.
A small number of cases can be linked to genetic disorders such as Fragile X, Tuberous Sclerosis, and Angelman's Syndrome, as well as exposure to environmental agents such as infectious ones (maternal rubella or cytomegalovirus) or chemical ones (thalidomide or valproate) during pregnancy.
There is a growing interest among researchers about the role of the functions and regulation of the immune system in autism – both within the body and the brain. Piecemeal evidence over the past 30 years suggests that autism may involve inflammation in the central nervous system. There is also emerging evidence from animal studies that illustrates how the immune system can influence behaviors related to autism. Autism Speaks is working to extend awareness and investigation of potential immunological issues to researchers outside the field of autism as well as those within the autism research community.
While the definitive cause (or causes) of autism is not yet clear, it is clear that it is not caused by bad parenting. Dr. Leo Kanner, the psychiatrist who first described autism as a unique condition in 1943, believed that it was caused by cold, unloving mothers. Bruno Bettelheim, a renowned professor of child development perpetuated this misinterpretation of autism. Their promotion of the idea that unloving mothers caused their children's autism created a generation of parents who carried the tremendous burden of guilt for their children's disability.
In the 1960s and 70s, Dr. Bernard Rimland, the father of a son with autism, who later founded the Autism Society of America and the Autism Research Institute, helped the medical community understand that autism is not caused by cold parents but rather is a biological disorder.
This is re-printed from www.autismspeaks.org.
What is Autism?
What is Autism?
Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder – Not
Otherwise Specified), Asperger's Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders.
How common is Autism?
Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Government statistics suggest the prevalence rate of autism is increasing 10-17 percent annually. There is not established explanation for this increase, although improved diagnosis and environmental influences are two reasons often considered. Studies suggest boys are more likely than girls to develop autism and receive the diagnosis three to four times more frequently. Current estimates are that in the United States alone, one out of 70 boys is diagnosed with autism.
What causes Autism?
The simple answer is we don't know. The vast majority of cases of autism are idiopathic, which means the cause is unknown.
The more complex answer is that just as there are different levels of severity and combinations of symptoms in autism, there are probably multiple causes. The best scientific evidence available to us today points toward a potential for various combinations of factors causing autism – multiple genetic components that may cause autism on their own or possibly when combined with exposure to as yet undetermined environmental factors. Timing of exposure during the child's development (before, during or after birth) may also play a role in the development or final presentation of the disorder.
A small number of cases can be linked to genetic disorders such as Fragile X, Tuberous Sclerosis, and Angelman's Syndrome, as well as exposure to environmental agents such as infectious ones (maternal rubella or cytomegalovirus) or chemical ones (thalidomide or valproate) during pregnancy.
There is a growing interest among researchers about the role of the functions and regulation of the immune system in autism – both within the body and the brain. Piecemeal evidence over the past 30 years suggests that autism may involve inflammation in the central nervous system. There is also emerging evidence from animal studies that illustrates how the immune system can influence behaviors related to autism. Autism Speaks is working to extend awareness and investigation of potential immunological issues to researchers outside the field of autism as well as those within the autism research community.
While the definitive cause (or causes) of autism is not yet clear, it is clear that it is not caused by bad parenting. Dr. Leo Kanner, the psychiatrist who first described autism as a unique condition in 1943, believed that it was caused by cold, unloving mothers. Bruno Bettelheim, a renowned professor of child development perpetuated this misinterpretation of autism. Their promotion of the idea that unloving mothers caused their children's autism created a generation of parents who carried the tremendous burden of guilt for their children's disability.
In the 1960s and 70s, Dr. Bernard Rimland, the father of a son with autism, who later founded the Autism Society of America and the Autism Research Institute, helped the medical community understand that autism is not caused by cold parents but rather is a biological disorder.
Welcome
I am a father of five wonderful and amazing children. All of them have special characteristics that make them different from the others, and all of them bring a great deal of love to our family.
A few years ago, my eldest son, Chandler was diagnosed on the autism spectrum. This diagnosis changed our world. I had never before been exposed to autism, or what it means in the lives of the people that it affects.
A few years later, my youngest son, Spencer received the same diagnosis. His diagnosis came earlier than Chandlers, and we have been able to get him into programs for early intervention that I believe will help "cure" him of autism.
This blog is not just to tell the story of two amazing boys with autism, but to discuss the trials that come along with such a diagnosis and what it has meant for our family. It is an open dialog of our life, from a Fathers perspective.
Thank you for your interest in autism awareness - you can either let the diagnosis define you or you can re-define it. I choose to re-define it.
Cory Howerton
A few years ago, my eldest son, Chandler was diagnosed on the autism spectrum. This diagnosis changed our world. I had never before been exposed to autism, or what it means in the lives of the people that it affects.
A few years later, my youngest son, Spencer received the same diagnosis. His diagnosis came earlier than Chandlers, and we have been able to get him into programs for early intervention that I believe will help "cure" him of autism.
This blog is not just to tell the story of two amazing boys with autism, but to discuss the trials that come along with such a diagnosis and what it has meant for our family. It is an open dialog of our life, from a Fathers perspective.
Thank you for your interest in autism awareness - you can either let the diagnosis define you or you can re-define it. I choose to re-define it.
Cory Howerton
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