Mary Hellner:(class of ’88) of Chelsea, mother of two, one of whom is Autistic. She wears a button on her purse that says “ask me about Autism” so she can bring a wonderful perspective. provide a brief story, or explanation of who you are, what your connection is with Autism and what you bring to the panel discussion. At that time I would like to open it up to the audience for questions. I would ask that each of you bring at least 2-3 of your own “questions” you think would prompt discussion, in case we are looking out at a group of people who might not know just what to ask….
Initial Diagnosis = No one wanted to tell me that it was autism. Doctors didn't. Parents of autistic boy because autism varies so much), she did not think that Sophie had it. Nurse Practitioner that I've known since kindergarten or 1st grade "looked" at me and said that the Mom knows best.
Educational = IEPs...changing schools = just me with about a dozen school staff from 2 different schools. Be nice to school staff. They work with your kid. They know your kid better than stupid researchers.
Emotional = Seek help and support from anyone that you trust.
Check my blog (old and current) for anything that I've mentioned about autism.
You cannot take what others say personally. They are ignorant. Talk about Mrs. Osentoski in the parking lot.
You will not take anything that your kid does for granted.
It's a blessing. It brings your family together. It gives siblings the opportunity to learn patience, compassion, etc. Hannah is the sweetest person I have ever met. I am blessed to have a wonderful support system with my sister, brothers, and their families. I have confidence that if anything happens to me, they will care for Sophie.
See autism wherever I go...someone is on the spectrum.
When I first started working in sales, 3 of the 6 people in my aisle had kids on the spectrum.
Tuesday, August 12, 2008
Tuesday, July 29, 2008
Smile!
If it's not one thing, it's another. Now, when I say this, I'm not wishing for something else to add to my already full plate. I'm just trying to say that there is always something on the plate.
Add to plate: I have TMJ.
I had a regularly-scheduled cleaning today, but I suspected that I had it. Over the last two weeks, my face has felt numb and tingling from my ear down to my jaw. After I relax or a little nap, the tingling went away. Since it's not worse in the morning, I'm guessing that this is stress-induced jaw-clenching and muscular in nature, and not that I am grinding my teeth when I sleep.
The dentist found one chipped tooth and some other smooth edges that would denote some teeth grinding. He felt my face while I moved my jaw around, and my jaw muscle was trembling.
Too bad I cannot afford any more dental work this year. (crap insurance!) So, I have to try to fix this on my own until next year.
Anyway, the dentist said that stress can cause it, as well as physical stress. So, if my back is tight and if my neck hurts, it could definitely lead to the TMJ in my jaw. The crapola work environment just keeps getting worse and worse!
Add to plate: I have TMJ.
I had a regularly-scheduled cleaning today, but I suspected that I had it. Over the last two weeks, my face has felt numb and tingling from my ear down to my jaw. After I relax or a little nap, the tingling went away. Since it's not worse in the morning, I'm guessing that this is stress-induced jaw-clenching and muscular in nature, and not that I am grinding my teeth when I sleep.
The dentist found one chipped tooth and some other smooth edges that would denote some teeth grinding. He felt my face while I moved my jaw around, and my jaw muscle was trembling.
Too bad I cannot afford any more dental work this year. (crap insurance!) So, I have to try to fix this on my own until next year.
Anyway, the dentist said that stress can cause it, as well as physical stress. So, if my back is tight and if my neck hurts, it could definitely lead to the TMJ in my jaw. The crapola work environment just keeps getting worse and worse!
Sunday, July 27, 2008
The unfairness of food
Most days, I have no problem with the dietary restrictions that I have. There are times though that are rougher than others. When I have control over what I order or when there are options available, I can choose wisely. Occasionally, I treat myself.
Sales meetings are one of those difficult events. If I just knew ahead of time what would be offered, I could prepare myself. Unfortunately, at the last one, the server incorrectly informed me what was on the dinner menu one evening, and there was a little hoodoo, but it all worked out. I splurged on the appetizers with 2 yummy shrimp and 1 fruity (more like jelly) pastry and even had 2 bites of some delicious chocolatey dessert.
I guess I get tired explaining it all the time. No one seems to understand. Even 2 nurses with whom I had a recent conversation didn't understand. They assumed that once you get rid of your gall bladder that you can eat all the fatty foods you want. Not true.
Anyway, there are other temptations out there. See my Mother's refrigerator freezer here:
Notice the top...not 1, not 2, but 3 frozen Pepperidge Farm cakes. My brother stocked up; there was probably a sale! However, take a look at the lower left corner. My Mom bought some veggie burgers so that I have something on hand whenever everyone else is eating a big cut of beef.
Now take a look at the deep freeze here:
Do you see all those pints of ice cream? Yummy-flavored ice cream? Yummy-flavored ice cream that I would love to devour?
So, my older brother can eat cake and ice cream every day...how is that fair?
Sales meetings are one of those difficult events. If I just knew ahead of time what would be offered, I could prepare myself. Unfortunately, at the last one, the server incorrectly informed me what was on the dinner menu one evening, and there was a little hoodoo, but it all worked out. I splurged on the appetizers with 2 yummy shrimp and 1 fruity (more like jelly) pastry and even had 2 bites of some delicious chocolatey dessert.
I guess I get tired explaining it all the time. No one seems to understand. Even 2 nurses with whom I had a recent conversation didn't understand. They assumed that once you get rid of your gall bladder that you can eat all the fatty foods you want. Not true.
Anyway, there are other temptations out there. See my Mother's refrigerator freezer here:
Notice the top...not 1, not 2, but 3 frozen Pepperidge Farm cakes. My brother stocked up; there was probably a sale! However, take a look at the lower left corner. My Mom bought some veggie burgers so that I have something on hand whenever everyone else is eating a big cut of beef.
Now take a look at the deep freeze here:
Do you see all those pints of ice cream? Yummy-flavored ice cream? Yummy-flavored ice cream that I would love to devour?
So, my older brother can eat cake and ice cream every day...how is that fair?
Mmm...butta
Mmm...Mmm...butta!I'm not exactly sure what Sophie thought this stick of butter was, but my Mother found it like this in her refrigerator.
There was some cheese in the dairy drawer. So, maybe she thought it was a big hunk of cheese, but she doesn't even like big hunks of cheese.
I'm just happy that she came to the conclusion not to eat the whole stick!
Saturday, July 19, 2008
cry-i-i-i-ng over you...
Roy Orbison sang it best. He sang about unrequited love or love gone bad. I feel it tonight, but differently. I cry for the love of family...missing by distance or in pain.
Hannah is off today for a week up north with a friend and her friend's family. I cried after I dropped her off at 1:30 p.m. I cried again when she first sent me a text at 6:37 p.m. And I cried just now at 9:42 p.m. when she sent another text that they had arrived at their destination. That does it...I'm going back to college when she goes.
My Mother is in the hospital tonight. I held it together on Thursday during the long day of prepping for surgery and recovery, but when I got in my jeep to leave the hospital after she was safely admitted into her room, I cried, gasping for the cool night air to bring me the will to keep going. Later that night after I got home, I cried as the adrenaline was gone, and the relief just washed over me. It's very hard to see the person who has always taken care of you, someone with beauty and grace and strength in more ways than she would ever admit, in such a helpless position.
I feel so splintered.
Hannah is off today for a week up north with a friend and her friend's family. I cried after I dropped her off at 1:30 p.m. I cried again when she first sent me a text at 6:37 p.m. And I cried just now at 9:42 p.m. when she sent another text that they had arrived at their destination. That does it...I'm going back to college when she goes.
My Mother is in the hospital tonight. I held it together on Thursday during the long day of prepping for surgery and recovery, but when I got in my jeep to leave the hospital after she was safely admitted into her room, I cried, gasping for the cool night air to bring me the will to keep going. Later that night after I got home, I cried as the adrenaline was gone, and the relief just washed over me. It's very hard to see the person who has always taken care of you, someone with beauty and grace and strength in more ways than she would ever admit, in such a helpless position.
I feel so splintered.
Friday, July 18, 2008
Aloof?
Now I am aloof? I absolutely love researchers. Hey, researchers, aloof this (hand gesture)!
New research shows that some parents of autistic children appear to be "socially aloof," providing more evidence that some aspects of autism are hereditary.
http://www.forbes.com/forbeslife/health/feeds/hscout/2008/07/17/hscout617555.html
"We found that some parents who have a child with autism process face information in a subtly, but clearly different way from other parents," Ralph Adolphs, another co-author on the paper and a neuroscientist at the California Institute of Technology, said in the news release. "This is evidence for the hypothesis that the parents with the autistic child have brains that function somewhat differently as well."
Socially aloof...what the heck does that mean? Even if Darren and I look at people's mouths instead of their eyes to process facial cues, would that really make my daughter unable to speak??? Would it really cause all sorts of digestive issues? Would it really cause her low muscle tone and her inability to control her muscles in the typical way? Come the "f" on!
Gee, big surprise...we are all different? Wow, I hope that these researcher made big bucks on that conclusion. Researcher, what is your real goal? Are Pharma companies and the AMA sliding you some cashola under the table to present your findings in a way that is placing "blame" on parents and not on the environmental factors?
Personally, I think that vaccines injured my daughter, but I never "blamed" the doctors. I'm sure that they thought they were doing what was best. But hey, if they cannot admit to the mistake, I don't really give a flying leap.
Researcher, you say that you are looking for a cause so that you can look for a cure? Bull-pucky. After you blame the parents, I never hear anything at all about a cure or anything at all that could help.
I would just like someone to come up with something, anything, to want to help my kid.
New research shows that some parents of autistic children appear to be "socially aloof," providing more evidence that some aspects of autism are hereditary.
http://www.forbes.com/forbeslife/health/feeds/hscout/2008/07/17/hscout617555.html
"We found that some parents who have a child with autism process face information in a subtly, but clearly different way from other parents," Ralph Adolphs, another co-author on the paper and a neuroscientist at the California Institute of Technology, said in the news release. "This is evidence for the hypothesis that the parents with the autistic child have brains that function somewhat differently as well."
Socially aloof...what the heck does that mean? Even if Darren and I look at people's mouths instead of their eyes to process facial cues, would that really make my daughter unable to speak??? Would it really cause all sorts of digestive issues? Would it really cause her low muscle tone and her inability to control her muscles in the typical way? Come the "f" on!
Gee, big surprise...we are all different? Wow, I hope that these researcher made big bucks on that conclusion. Researcher, what is your real goal? Are Pharma companies and the AMA sliding you some cashola under the table to present your findings in a way that is placing "blame" on parents and not on the environmental factors?
Personally, I think that vaccines injured my daughter, but I never "blamed" the doctors. I'm sure that they thought they were doing what was best. But hey, if they cannot admit to the mistake, I don't really give a flying leap.
Researcher, you say that you are looking for a cause so that you can look for a cure? Bull-pucky. After you blame the parents, I never hear anything at all about a cure or anything at all that could help.
I would just like someone to come up with something, anything, to want to help my kid.
Wednesday, July 16, 2008
Books...
Books...are better than life.
You can pick up a book and live it whenever you want that life.
You can put the book down when you need a break.
No wonder I spent my youth up a tree reading a book. All summer long on any non-rainy day, I would climb the tree behind the house and read. Then I could take a walk to the swamp and pretend to be the heroine. In bad weather, I would hide in my room or in the basement, and I would be transported to another sunny life.
How wonderful and lucky that my parents gave me the safety and security of a childhood where I could live through books and nature.
The heroine of my book always has a struggle, but she endures, and she thrives.
Her family is always quirky, but good loving people.
Friends are always the loyal and supportive sidekicks that build the heroine up instead of tear down.
The struggle comes from God, nature, society, man, or self.
I'm old enough to be over, for the most part, my doubt of or anger at God. God does not cause me much struggle anymore. He is more of a comport, a guide, a beacon home.
In the safe confines of my hometown, I do not have to struggle with much of a force of nature. An occasional power outage, a foot of snow...those are not life-struggling events. Those are just things to deal with. Nature is usually my friend. I can remember being upset in college. I would just look out the window and watch the leaves blow on the tree. My Dad always said, "You do what you have to do."
Society is a fearful thing. You have to wonder what we are all thinking collectively to have gotten to such a strange place in our time. We think certain things are okay when they are so strange. I heard once that people who are afraid to be individuals join groups. I think as well, people want others to be like them to validate themselves. I don't want anyone to be like me...that would be boring. However, we're constantly held up to the expectations of others. If you don't dress like this or act like this, then you are nothing, because you are not like me. It's the ego of the individual to think that they represent society. My Dad always said, "You just have to get along with people."
Me against man. My Dad always said, "Everyone's different." Why is it, then, that we cannot be accepting of others when they are not like us? I'm going to try to be more accepting of rude, stupid people when dealing with them one on one. They cannot help it that they are not totally cool like me. Every one of us has no idea what the other person is feeling or thinking. There is all this history that no one else can truly understand. Why do we try? Maybe we should just accept it and hope for the best. We seem to all seek this partner in life, this witness. But do they really witness you...the real you? No person knows me. Maybe the struggle comes when you want them to know.
I am in a constant struggle against myself. I am also very comfortable with myself. That, in itself, is a constant struggle. Logic? Circles.
I wish I could put this book down for a minute. Or end this chapter and start a new one.
You can pick up a book and live it whenever you want that life.
You can put the book down when you need a break.
No wonder I spent my youth up a tree reading a book. All summer long on any non-rainy day, I would climb the tree behind the house and read. Then I could take a walk to the swamp and pretend to be the heroine. In bad weather, I would hide in my room or in the basement, and I would be transported to another sunny life.
How wonderful and lucky that my parents gave me the safety and security of a childhood where I could live through books and nature.
The heroine of my book always has a struggle, but she endures, and she thrives.
Her family is always quirky, but good loving people.
Friends are always the loyal and supportive sidekicks that build the heroine up instead of tear down.
The struggle comes from God, nature, society, man, or self.
I'm old enough to be over, for the most part, my doubt of or anger at God. God does not cause me much struggle anymore. He is more of a comport, a guide, a beacon home.
In the safe confines of my hometown, I do not have to struggle with much of a force of nature. An occasional power outage, a foot of snow...those are not life-struggling events. Those are just things to deal with. Nature is usually my friend. I can remember being upset in college. I would just look out the window and watch the leaves blow on the tree. My Dad always said, "You do what you have to do."
Society is a fearful thing. You have to wonder what we are all thinking collectively to have gotten to such a strange place in our time. We think certain things are okay when they are so strange. I heard once that people who are afraid to be individuals join groups. I think as well, people want others to be like them to validate themselves. I don't want anyone to be like me...that would be boring. However, we're constantly held up to the expectations of others. If you don't dress like this or act like this, then you are nothing, because you are not like me. It's the ego of the individual to think that they represent society. My Dad always said, "You just have to get along with people."
Me against man. My Dad always said, "Everyone's different." Why is it, then, that we cannot be accepting of others when they are not like us? I'm going to try to be more accepting of rude, stupid people when dealing with them one on one. They cannot help it that they are not totally cool like me. Every one of us has no idea what the other person is feeling or thinking. There is all this history that no one else can truly understand. Why do we try? Maybe we should just accept it and hope for the best. We seem to all seek this partner in life, this witness. But do they really witness you...the real you? No person knows me. Maybe the struggle comes when you want them to know.
I am in a constant struggle against myself. I am also very comfortable with myself. That, in itself, is a constant struggle. Logic? Circles.
I wish I could put this book down for a minute. Or end this chapter and start a new one.
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