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Posted by Shari at 2:01 PM 0 comments
I'm sometimes given pause by Oprah Winfrey, who is clearly an intelligent, educated woman....And I'll tell you why... Sometimes she does some really oblivious things. Things that make me say to myself," And you just noticed this?"
For instance she had on her book club one month the book," East of Eden". Now she talks about this as if this is something that perhaps no one her age has ever read before. Well, I read it in high school. I also read "The Winter of our Discontent" also by Steinbeck. In highschool.
So...You're just getting to the whole, deep reading phase?
Okay, I'll admit- I've never read "Catcher in the Rye." I believe it may be too late.
But still....
Her latest thing is a campaign to stop people from texting, cell phone talking or anything really to do with a cell phone in the car.
Well that doesn't stop those people who read speeches, newspapers, textbooks, work on their laptops, do their hair, put on makeup, discipline their kids, make love, slap people in the back seat, play with the radio, or flip through CD's...
Obviously for twenty or so years ya'll's been usin a driver cause I've noticed this stuff goin on for awhile...And it ain't got nuthin to do with the advent of cell phones.
This is what I mean....Just an observation mind you.
Posted by Shari at 1:17 PM 0 comments
Posted by Shari at 6:45 PM 0 comments
I remember times in my life when I was very Asperger's, I didn't at the time think of them as being that way then but as an adult with knowledge of Asperger's, I do.
I remember the girls in my group of friends talking about which boy they had a crush on and if I did. And really honestly I never had a crush on anyone. So to be like everyone else I claimed to have a crush on Matt Cooper.
And not really.
He was an adorable little boy and he was my playmate when I was small but, I wasn't really interested in him...My mom would say otherwise but my mom lives with delusions of the 1950'sand 60's, so... She'd kind of go, "Oh Shari, not just a little?" And I'm being honest when I say, other than affection for him as my childhood playmate....Um, no.
The one thing I must say about Matt is that he was (besides two of my cousins) one of the people in my life that taught me about disabilities. The reason for that is because he stuttered.
Some children like me and some adults for that matter, don't ask questions about disabilities out of malice. They ask because they are curious. I can't remember ever asking about why he stuttered to his face. I can almost imagine that my mother probably told me not to say anything to him about it because it would hurt his feelings. I know she probably told me that he couldn't help it; and to my four year old mind made all the difference. If someone couldn't help it...Well, it was out of their hands. I learned that from my cousin Paula and her sister.
So again an instance of God's training camp for the autistic parent. What better training than a playmate with a speech impediment.
My mom tells me that I defended him to another classmate that was making fun of him. Imagine that? I can't remember it, although I have strained to do so…It escapes me. However, I will take credit for it. I probably did it because defending someone different than everyone else came to me as easily breath.
Matt grew up and grew away from me. He became one of the more popular kids in my class. He barely spoke to me in high school if he even did. I saw him at a grocery store not too long ago. He waved and I gave him a crooked smile, I can't remember if I waved. I don't think he knows what an impact he might have had in my life.
I guess if he ever reads this he will.
Posted by Shari at 6:35 PM 0 comments
This morning I woke up and got some toaster strudel out of the freezer and popped it into the toaster and poured myself some tea. I went in and picked out my clothes and got ready to go see my friend who would color my hair for me. I would give Booga an hour to get ready to go, that would include getting in the shower and getting dressed and popping some more toaster strudel in the toaster and making coffee and getting him some orange juice…No big deal.
Now on the other hand, actually going to my friend's house with Booga; now that's actually something of a big deal. That requires that Booga bring: a snack, possibly popcorn, a movie, possibly something along the lines of "The Producers" and sometimes, depending on the friend, a small portable DVD player. (A small portable DVD player in lieu of the laptop computer we used to haul around –IS A GODSEND!!!)
Just before we left, Missy called and wanted to talk and I talked to her for a little while. Booga was in the shower and as soon as he was done I went back in my room to do something with my increasingly silver mop of hair.
Just as I was about to put on my boots I walked out into the kitchen to find Booga making some scrambled eggs and two slices of bacon and toast. And he had put the frozen bacon in the microwave to thaw so he could have even more bacon.
"No no no!!!" I said loudly. "Boog, what are you doing? We can't do a huge breakfast this morning!" I don't know what got into him. He probably saw something on television in a movie or for some reason had gotten it into his head that this would be a good morning for that sort of thing. I'm guessing. So I watched him make his breakfast. And called my friend and told her what was going on. I told her we would be late. Good thing I came out when I did.
Existence in our household is generally the source of great amusement among my peers and family members. This is because sometimes it's all about people just doing what they want so that the day goes smoother, which was the case this morning. I have to be honest, my life is a big bunch of shrugging my shoulders and shaking my head in disbelief- I just give in to the insanity of it... Last thing I wanted to do was agitate the Autistic person in the house.
Heaven Forefend.
Finally we got to the car and over to my friends house. She colored my hair (and for those of you that really want to know the color- it's a lovely Chartreuse. I'm kidding of course….My hair is terminally red. Been red since forever.) And to thank her I took her out to a lunch of chicken wings and French fries. Booga was in chicken wing heaven.
In the middle of the meal, he excused himself to go to the bathroom saying, "Excuse me ladies, I have to go to the rest room."
My friend and I sat and ate and talked and waited for him to return. Suddenly I heard a voice that sounded just like Booga's saying, "HEY! WHAT'S YOUR NAME!?!" And I thought, "That can't be my kid." Then I heard it again and it was pretty evident that it was Booga, "HEY! WHAT'S YOUR NAME!?" I can only imagine the swirling, dizzy, inebriated patron that Booga was yelling at in the bathroom. The poor man who was wondering if he had wandered into some kind of alcohol induced nightmare that included a 5ft 8 inch, 200 pound Autistic man, insisting he drag himself back to some kind of awareness and pull his name out of the vials of knowledge that most likely seemed inaccessible at this moment. Soon Booga came back to the table, obviously satisfied with his answer. I'll never know what happened. I didn't see the man come out of the bathroom and it's probably just as well. I am sure he was found later by the cleaning crew; unless somehow he passed below my radar- which could be.
There is no such thing as a private moment in Booga's world. Trust me on that.
Booga and I came home late in the afternoon and I decided that we should make some Pillsbury valentine cookies, since I had them and I really don't think that valentine cookies can really pass for Lenten cookies. So we decided to bake them and have them for a snack while we watched Temple Grandin on HBO. (He now has a thing for Temple Grandin…Or at least the woman that played Temple Grandin.)
We went over the directions and it wasn't very difficult because they were pre-cut out and ready to bake. So I told him what the temperature was on the stove and he set it and showed him how to set them on the pan and he did a great job.
When the timer went off and he took them out of the oven, I told him, "When you take them off, you have to do it fast, like this…." I took the spatula to show him and zoomed the spatula under the cookies so that I could get more than one on to the spatula. When I did that, one broke into two pieces. Booga cried out in shock and took the spatula and slowly started to take the cookies off the sheet saying, "That's just not cool." He took more cookies off the sheet, "That's disgusting."
I just laughed and ate a cookie.
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Posted by Shari at 7:11 PM 0 comments
I gotta stop writing at
I'm tired....Always. And more tired when I am sick, which is where, I am sorry to say, I have been for a week now. Sick with a cold that Booga gave me. We're supposed to get a snowstorm tomorrow and luckily we don't have school anyway, but I took Booga out of school today because neither one of us has had much sleep lately and I wanted him to get some sleep.
This is diagnosis week. The week that Booga was diagnosed fifteen years ago. I could tell you the day but it wouldn't mean anything to you. It means something to me. Everyone is excited and buying everyone else things for Valentines Day. But for my husband and me this week is the anniversary of getting the news that all our suspicions were correct.
I worked for almost three years trying to find out what was wrong with my son. I went from neurologist to neurologist, then from psychologist to psychologist. Back then, I had done research on Autism and PDD and Asperger's and they didn't want to diagnose him with anything really. I don't know if that is changed or not. I had to throw a book by Paul Zionts at them and demand they listen to me. Then we had to be sent to a mental hospital only to have them look at me and say, "At this point you could leave him here."
And that was like telling me my greatest fear for him.
"What? No. I'm not leaving my child here."
I’d seen my cousin go into an institution like this and never come back out so…BIG NO!!!
The day he was diagnosed my husband and I sat in the room, surrounded by psychologist and psychiatrist and when they told us, he began to cry- it poured out like water. He cried like someone had told him that Boog had died. And actually, in a way he had died to him. He wasn't going to be the football player he wanted. He wasn't going to work on cars. He wasn't going to have it easy. And yes, he was going to be a lot of work.
I had cried already, I'd cried and bawled and sobbed and wailed until I shook. I'd stood at our kitchen window with a sink full of dishes and Queen's Reich in my ears and the tears dripped into the water and I mourned my perfect baby with the Apgar of 10. And I'd already begun to bury that child.
My husband was just finding out he was dying.
It was a day my husband refers to as one where he got kicked in the chest. He sees it differently than I do because I had been dealing with it far longer than he. My husband spent an inordinate amount of time in denial.
That was okay. My dad was in there with him. They had jackets.
My dad, who was so intelligent and created different kinds of plastics and had patent's with his name on them, refused to believe that his grandson could be anything but perfect.
I'll never forget telling my family...The look on my mother's face was like someone had thrown a fish at her and hit her square in the forehead with the thing. She asked me if I believed in Miracles. I said I did. And then my sister-in-law asked me what we were going to do? And I said, "What's best for him."
And that's what we did.
We didn’t treat him any differently than our other children and our other children tell us they didn’t know any other way to treat Boog than like their brother.
We were told he would probably never talk (We were told that it was unlikely he would ever hold a conversation with us when he did speak) and that he would probably never be potty trained or learn to read or look at us or even know who we were....
Boog at twenty, sings all the time. Talks incessantly, although not always about something you are interested in or about something that makes sense to you. He is obsessed with Steven Spielberg. He has two books on him. He wants to go to
He walked his sister down the aisle when she got married and helped his father give her away. He danced with her at her reception.
There isn't a family member of ours that doesn't love him.
He is so much more than his diagnosis. And so much more than the doctors ever said he would be.
I'd like to think I had something to do with it but it's a lot of teachers and a good support coordinator and his family and now friends who have gotten him here. And God- God had a big hand in this. I prayed all the time on topics ranging from sleep issues to potty-training.
So here we are, fifteen years in he's still a big pain sometimes. But he's my big pain. And I wouldn't trade the big Boog for all the tea in
Posted by Shari at 1:19 PM 0 comments
I run around the internet all the time looking for things. I look for good deals on clothing and I look for the odd item that would tantalize someone’s imagination.
I look for things that my husband thinks would be “neat”. I look for parts for cars and articles on what silliness is going on in the world of politics. I check out what my friends are doing and I look at what’s on what’s on Amazon, I look at the latest techno gizmo and I look for stuff on Autism. I read articles and look at different opinions and check out message boards.
One day I was looking stuff up on Autism and I found a message board. What struck me was this was a message board that whose participants were mostly all teenaged Autistic people. What they said sort of felt like a slap in the face to a parent of an Autistic child. It was angry and antagonistic and in my opinion ungrounded. But sometimes the opinions of the young don’t have to be grounded in what we as parents see as facts but what they see as repression. They are teenagers and they seem to enjoy being among the throngs of the repressed. What these kids were complaining about was that they were not happy about the fact that people had an organization to speak for them, because “they could speak for themselves.”
And I thought about this, and I said to myself, “Wow, these kids just don’t understand what the problem is with that statement.”
So I wrote a letter to these children. Maybe if they are the kind of people who run around on the internet and look for things they’ll see it in passing.
I think it kind of tells them why that statement is sort of well….wrong.
Dear Child of Autism,
I couldn’t help but read where you thought that because you could speak for yourself, that you didn’t need a place to speak for you or for that matter anyone else to speak for you. Wow, you have come a long way haven’t you? Good, I applaud you for that. But there is something I want you to think about and I know that you will think about it because thinking is something that Autistic people do best. Now read this carefully because this is all about you and your history as a person with Autism.
Granted, you can speak for yourselves. However, there are countless throngs of autistic people who can’t. Some autistic people can speak but can’t speak well enough to be understood without help and some autistic people are so young that they must have a voice through their parents.
See, for starters, if we hadn’t spoken for you from the beginning, where would you be? Undiagnosed and wondering why you couldn’t cope, unable to do anything about it because everything you did was something someone was telling you to stop. Wondering why people walk away and don’t want to hear what you have to say sometimes, and wondering why you obsess over things. Wondering why you’re not able to handle going to a parade or a party and questioning why people made you sit among groups of people during the holidays and tolerate it. You would be dealing with teachers who didn’t work with you to bring you to your full potential, and you would be ignored as being difficult or worse. Worse, is being looked at as less of a person than the individual sitting next to you who might or might not be as smart as you are but who was thought to be superior because of the way their brain just happened to be wired. Even though yours was wired in a way that is just as wonderful.
A long time ago, people with Autism were put in psychiatric homes, some were institutionalized as children.
I saw my cousin go into an institution. She died in the institution, and the first time I ever saw her, was when she was in her late thirties, at her funeral.
I was told, when my son was diagnosed, that I could leave him at the mental hospital if I wanted to…In fact I had family members that told me he would probably have to be “put away”. Think about that for a minute- Just a minute.
And if you went to school, which would be a big “if” they would push you through school and chances are you would never understand what happened. Why was life so hard for you? People would criticize without knowing, and hurt without thinking. And they wouldn’t understand what was going on with you, and they wouldn’t do it out of malice; (although some might) most would do it out of ignorance.
When they wanted to put my son in an institution I wouldn’t do it- I love my son- I will fight to the last fiber of my being for him, I will exhaust every inch of my life to make his the best in can be. I will anger people and I will alienate my friends and family if need be, because he is who he is and he is valuable in his own right…And if the world can’t meet up with me to help, then I will change the world for him.
When we reach out to each other, and try to lean on one another, it’s about being a united force. It’s about what your parents and grandparents and their friends and their work mates and your teachers and aunts and uncles are all striving to do for you, to help you make you the best you that you can be.
This is why we needed to speak for you; as a child, as a teenager, as an adult even.
There is power in numbers and we need each other, even though you want to pull away and go down your own path. You-You children right now, in this age, are so lucky to have parents, teachers, brothers and sisters, aunts and uncles and grandparents and great grandparents, that have strived to make your voice heard. We are the ones who have worked to make your issues known and get you the services and programs and teachers that could help you. We’ve worked and screamed and spent countless hours and dollars to make sure you were acknowledged.
The reason I have time to go on the internet to find things is because I gave up a career to stay home, to be there for my son. I have alienated my friends, I have made people angry and I will continue to do so for my child. I love him- and fought for him and it didn’t matter to me whether he wanted me to or not. And it will never matter to me whether or not he wants me to fight for him; I will continue to do so even after he leaves home.
God bless those who love you and will stand between you and world with a sword and shield and protect the right for you to be the person you are, treated well and fairly. God bless those who will jump into the fire to take on the evils of this world and you should praise God for the fact that you have been given such a gift. Thank God you live now. Because, being teenagers you’ve never known a world that doesn’t know about you.
So before you condemn us for trying to take away your right to voice your opinions to world, understand that the reason that you are able to convey these thoughts and feelings are because we were your voice when you couldn’t speak.
Thanks for reading this,
A parent of a twenty year old Autistic man
Posted by Shari at 9:04 PM 0 comments
Posted by Shari at 10:18 AM 0 comments
Posted by Shari at 12:54 PM 0 comments
Well, it’s
Okay, so here’s the deal. I have this cold. It’s not bad and by not bad I am meaning that it’s not incapacitating, it’s a cold. I had this monster flu in the fall. I’m not going to say it was Swine Flu because well, I never went to the doctor. but all indications point to a big “Yes” because I couldn’t function. I mean, I ran a fever, I coughed like no tomorrow, and I sat in my living room one night and basically allowed my body to bath in its own sweat until my fever broke. It was pretty horrific. However, I espouse the belief that what does not kill you makes you stronger. Thank you Conan the Barbarian….
SO I was thinking that this is not that bad of a cold, I’ll drink Cone Flower tea and eat chicken soup and take it easy for a day or two (HA!) and then I’ll be back on my feet.
Well, here’s the problem with me carrying on with that theory; when I was a little girl, I had pneumonia. If any of you have had pneumonia you know what that is like. I felt like I was drowning inside my own body, I couldn’t breathe. This is something I never got over.
To this day, I can’t stand for other people to touch my nose. I can’t stand my nose to be plugged. It makes my eyes water and I want to scream. And what’s worse is that after you are hospitalized with Pneumonia you walk along life and pick up every single cold and flu bug that briefly passes you by because, well, your immune system is compromised. I had more colds in high school than most teenagers simply because of my immune system being trashed. I just had to be around someone with a slight cough and it would turn into a raging cold.
It got a slight bit better as I got older, but still I couldn’t stand it not to be able to breathe.
So when I developed allergies early on because of my compromised immune system, I got hooked on nasal decongestants, the spray kind, because I constantly wanted my airways clear and when you have children and pets and allergies and a compromised immune system, you’re constantly congested. So I constantly have a thing of decongestant spray in my purse. My husband calls it “Nose Candy”. And you would not believe the looks I get from people when he casually mentions that we need to stop and get me some “Nose Candy.”
I have to explain to them that it isn’t the kind of nose candy they are thinking of. That it’s my own kind of legal nose candy and watch the color come back into their faces.
So back to this cold; Booga came home with a cold. His teacher was pretty funny, because of course; she’s never had this problem. She came out to the car and said, “Well, he’s a little congested, we have the sniffles going around the classroom…”
Oh great. Thanks to whoever’s mom or dad dropped off junior or juniorette with a cold. Lovely.
So of course, I got the cold. And it’s a cold. No big deal-right?
Well, I take stuff to help me sleep because I have always had problems sleeping. I don’t know why. I sometimes attribute it to the hideous nightmares I had as a child that were the result of my father’s insistence on watching the evening news at dinner in the 1960’s and 70’s. These people back then, for the sake of shock and awe, televised the entire Vietnam War. Not the best thing for a child between the age of 5- 10. On top of that, there was always talk about the war in our house. My mother’s cousins were over there and my one brother was draft age and in fact did get drafted and was 4-f.
So as an adult I had issues with sleep to begin with put on top of that the issues of my adulthood- Booga, my husband’s profession, and 911 and it’s a cocktail for insomnia. And I am quite aware that I need help to sleep because I am not getting there on my own. I almost fear it until I am in it and then I could sleep for days.
Well, when you have a cold and your taking all sorts of over the counter medications, you can’t take sleep-aids because they themselves usually make you sleepy. So I stop taking them when I am taking cold medications like nighttime decongestants and “Tylenol Cough and Cold”. I am counting on that “Tylenol Cold and Cough Night Time” to put me out.
Yesterday, I talked to my husband and I told him casually that I wouldn’t mind having a cold if it didn’t have to come with the nasal congestion and the dripping and so forth and he said, “Well, hey you should go to the drug store and ask for the Sudafed that they have behind the counter. The kind you have to show your drivers license for. That will dry your sinuses right up.”
Well, there is a reason they have this stuff behind the counter, it’s because people make (along with some other chemicals) Methamphetamines out of it. The thing about Meth is this (and the only reason I know this because I read a long article on it) Methamphetamines will cause you to be hyper, and you don’t sleep and have to do something with all this energy. And now I know why this stuff is such a big ingredient in this illegal drug because here I am at
So, clearly not gonna be able to take this in the evening, quite possibly not going to be able to take this full stop.
Thanks dad for your contribution to my insomnia. I appreciate that. Watching the nightly news are you? Yeah, I watch it too at dinner time- reminds me of home.
Probably around 6:30 AM or so, I will take a sleep aid and get three hours of sleep before someone calls the house and wakes me up or less. But friends it’s been a long night.
The band was the Crocodiles on the “Last Call with Carson Daly” last night, and it was pretty friggin hideous. It might have been what was called “art” or “New Wave” but I call it “Just Noise.” I mean I probably would have done a different song than what they were playing. And I know that you’re an emo kid running around with all sorts of parental issues but dude, take some music classes in college. Your band doesn’t have to sound like the Emergency Broadcast Systems alert throughout three quarters of your song to get it across that you’re angry.
I love music, I mean; I have music going all the time. I have XM in my car. I have tons of music I have acquired. My kids give me music to keep for them so I have their music. I listen to everything from pop to rap. I’m not crazy about all rap, some of it is just okay. Some of it, with the right blend of music is not bad. I think it gets bad press from some parents. Some of it does. SOME OF IT. Some of it is, clearly trash.
But this was just plain NOISE.
I almost never get out of bed to turn off my television, I put it on the sleep timer and I listen to it while I go to sleep. And I literally got up and turned this crap off. Ugh! They played this one song that was like a tape replaying over and over, the same sound. I’m sorry, that’s not music, not in a long shot.
Posted by Shari at 2:30 AM 0 comments
Booga is interested in learning to cook. However, unless you put both your hands behind your back and stand back out of the way and just watch him, he doesn't want you in the kitchen at all. He wants to do it by himself.
I have convinced him finally to let me cook with him instead of cooking alone.
We made spaghetti last night. He wanted to do everything by himself and I had to grab his shirt when he was leaning over the stove to set up the temperature and the timer or else he would have set himself on fire leaning over the open flame.
Oh, yeah, letting him cook by himself is a good idea.
Not.
He's learned to brown meat and he watches me intently while I cook.
Last night, I noticed that he threw the fat from the browned meat down the toilet. The only way I could tell that is because you could see the congealed fat on the side of the toilet. He must have seen me do it.
My mother used throw stuff like old soup down the toilet. And I swore I would never do that because it's gross, and here I am doing it.
Anyway, He was really mad at me and it was entirely my fault because I should have known better…He doesn't like meat in his spaghetti….I had mixed the meat, sauce and spaghetti together.
SHAME! Hang your head in shame!
He doesn't like meat mixed into the Spaghetti sauce….I don't know why?
I can't figure that out other than he saw it in a movie or that he had it at school sometime, because he doesn't like meatball's either and I can count on my one hand how many times I have made meatballs for this family.
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I have a small cold that is trying to be a Pit bull when it's simply a Papillion.
My one cat was going crazy this morning, and I was wondering what was going on.
He was just meowing and meowing around the same time that I was messing with my Echinacea tea and I thought, "Well, he probably thinks its cat nip- it's in the same cupboard as the Echinacea."
So I'm baking banana bread and am talking to Missy on the phone and trying to find my Echinacea tea- and I couldn't find it. I thought I was losing my mind because I distinctly remembered getting out of the cupboard this morning and making myself tea with lemon for my cold.
I had a full cup of it last night and slept like a baby.
So I am searching and searching and lo and behold I found it in the cupboard with my boxes of tea where I probably had put it the night before. It's in a zipper bag and in my sleepy stupor I probably grabbed the cat nip (also in a zipper bag) and made myself catnip tea with lemon this morning instead of Echinacea. It's probably why my cat went nuts and why I couldn't taste the cone flower in my tea.
I'm such an idiot.
DuOH!
Posted by Shari at 3:05 PM 0 comments