So continuing with the theme of the last post, I found a new blog of a young adult graduate student with asperger's who recently discussed the issue of genetic prenatal testing and austism. She spoke quite elegantly about how it made her feel to be in a position to have to fight for her right to merely exist. She is pursuing a career in advocacy, and I feel lucky to know that someone like her not only exists, but will be fighting for my children.
I again apologize for my lack of technology skills, but here is a link you can cut and paste if you are interested in reading a very eloquent essay on the subject. My feelings, I fear will be expressed far less so, but my comment is underneath. My apologies to Amy for not asking her permission to track back. I know I will figure out how to do it eventually.
http://minikitkatgirl.blogspot.com/search/label/prenatal%20testing
What a horrifying thought that my two children with AS should not exist. I have to fight hard enough to get appopriate education for them without having also to justify whether they have enough value in this world to be allowed to breathe.
And I am one of the lucky ones. My children will most likely go to college, own property, have families of their own. And while it true that the world would be unlikely tobe able to sustain supporting individuals who weren't eventually self sufficient if their number grew to significant proportions of the population, I believe that is merely a wake up call for us to discover causes and clean up our toxic environments rather than a rush to euthanization of "imperfect" fetuses.
Using that kind of logic, should we consider an age at which all the elderly be euthanized because they are no longer able to care for themselves and may become a burden on their children eventually?
As with Down Syndrome, you can't even know a child's potential until after they are born and well into adulthood, whether they are on the spectrum or neurotypical or have some other kind of disability. Disability also occurs well after birth. I think of smart people that I went to school with who descended into drug addiction never to return as "productive" member of society - yet. Should we ask them to step into giant trash cans?
I am prochoice also, but I can't see that the solution to slowing down the rapidly growing numbers of people of disabilities is encouragement of mass abortions. Research shows that high percentages of women who have abortions are heavily traumatized by the experience for life, and wish they hadn't done it.
We have currently a large population of children on the spectrum in the U.S. who will soon be transitioning into adulthood, and we have failed at developing corresponding transitional adult programs and services that will help them lead productive, meaningful lives. That is OUR failure, not theirs. We also need to be a lot better at providing "appropriate" education so that those who could be self sufficient can be. There is a lot more to helping someone reach independence than just filling their heads with academics.
I guess part of this discussion is why people have children, and what are parents reasonably entitled to. If we advocate reproductive freedom, are we hypocritical to argue against abortions based on genetic testing? Would I have a breaking point personally? Like I know I wouldn't abort a fetus based on DS, but might I consider it for a child who is bound to have a short painful life based on some hideous disease? And since I already know that genetic testing is still horribly flawed, could I bear the knowledge that I might risk making a terribly painful choice in error?
I am already walking a tight rope here, because I decided some time ago NOT to have anymore birth children based on the chance that they might also have some form of autism. I am stretched pretty thin as far as parenting resources as it is, between making the decision to stay at home rather than work since my children need me so much, and my own energy/productivity. I also need to take into account my OWN disability level since the stress of pregnancy on my body and the stress of raising these kids with special needs have taken a heavy toll on my own health. So who am I to tell someone not to abort a fetus based on whether or not genetic testing shows disability?
I guess it's just so hard to hear other people talk about how little value or potential children like my kids have. I dragged my son to his first IEP meeting ever, because staff at his school had already made so many offensive comments to me WITHOUT EVER MEETING HIM in regards to his future. I wanted them to be absolutely unable to deny him his humanity, and I guess I will continue the fight to prevent the rest of society from doing so as well.
Wednesday, December 31, 2008
Sunday, December 14, 2008
a judge decided Terri Schiavo had no value
One of the reasons, among many, that I'm so grateful that both my autistics sons are so high functioning is that it's hard enough to get services for them without also proving that they are worth it. My children have enough expressive language skills to speak for themselves should anybody try to deny their humanity. But for any parents who have been denied services on the basis that it's not cost effective since their children are too low functioning, couldn't possibly benefit, are essentially not worth it, well, yes, that's the kind of society we live in. Read here about the world's only known deafblind triplets whose parents have worked tirelessly to raise private funds for their education when government services proved highly inadequate: http://www.chron.com/disp/story.mpl/headline/features/4946594.html
There is far too much debate about what constitutes a free, appropriate education. But education is just one aspect of our society through which we are willing to throw away the "lesser" members of our population.
One of my favorite new blogs is written by one of my fellow PA residents, and she wrote a very poignant commentary called Terri Schiavo and Autism, what is the connection. I don't know how to create links yet, but hopefully if you copy and paste you will be able to access the post to read the whole thing if you'd like. Basically, Terri Schiavo had brain damage, and needed help eating and with personal hygiene. She also had lost use of expressive language. She was not in a coma, she was not on life support. Her family of origin wanted to continue to care for her; her husband (who was considered by many to be responsible for her brain injury in the first place) got a court order in order to legally kill her by starving her to death.
http://debstake.wordpress.com/2008/11/20/terri-schiavo-and-autism-what-is-the-connection/
This was my comment:
I meant to say something about this the first time I read it, but was interupted by one of my aspies and forgot about it. But I think you hit the nail right on the head here, it is absolutely terrifying to think that any of us could so easily be disposable if the right circumstances conspire against us. People think this is an isolated incident, but this kind of attitude is used all the time to deny lower functioning autistics any kind of special education services or beneficial therapies. It is viewed as pointless or lacking pay off. Many wonder why so many parents in the autism community are focused on “cure” instead of accepting our children the way they are. WE are the ones who DO accept our children and value them, it’s the rest of the world that is so quick to dismiss our kids.
If we could prove that autism is curable, and enough kids “recover”, as they reach those higher levels of functioning, it is more difficult for the kids to be DISREGARDED. As Terri Schiavo was. What was especially horrifying to me about that specific case was that she had people who loved and cared about her advocating mightily on her behalf, and the government reasoned that it was STILL OK for her to be snuffed. Well if they have no concern about pumping our kids full of poisens that harm them, why should we surprised when they sanction outright murder? With all the reparation programs that we have instituted for slavery, forced sterility victims, and the World War II incarceration of Japanese Americans, you would think that we had reached a more enlightened age. We admitted we were wrong to deny people their civil rights and consider certain groups of people expendable. Guess not.
There is far too much debate about what constitutes a free, appropriate education. But education is just one aspect of our society through which we are willing to throw away the "lesser" members of our population.
One of my favorite new blogs is written by one of my fellow PA residents, and she wrote a very poignant commentary called Terri Schiavo and Autism, what is the connection. I don't know how to create links yet, but hopefully if you copy and paste you will be able to access the post to read the whole thing if you'd like. Basically, Terri Schiavo had brain damage, and needed help eating and with personal hygiene. She also had lost use of expressive language. She was not in a coma, she was not on life support. Her family of origin wanted to continue to care for her; her husband (who was considered by many to be responsible for her brain injury in the first place) got a court order in order to legally kill her by starving her to death.
http://debstake.wordpress.com/2008/11/20/terri-schiavo-and-autism-what-is-the-connection/
This was my comment:
I meant to say something about this the first time I read it, but was interupted by one of my aspies and forgot about it. But I think you hit the nail right on the head here, it is absolutely terrifying to think that any of us could so easily be disposable if the right circumstances conspire against us. People think this is an isolated incident, but this kind of attitude is used all the time to deny lower functioning autistics any kind of special education services or beneficial therapies. It is viewed as pointless or lacking pay off. Many wonder why so many parents in the autism community are focused on “cure” instead of accepting our children the way they are. WE are the ones who DO accept our children and value them, it’s the rest of the world that is so quick to dismiss our kids.
If we could prove that autism is curable, and enough kids “recover”, as they reach those higher levels of functioning, it is more difficult for the kids to be DISREGARDED. As Terri Schiavo was. What was especially horrifying to me about that specific case was that she had people who loved and cared about her advocating mightily on her behalf, and the government reasoned that it was STILL OK for her to be snuffed. Well if they have no concern about pumping our kids full of poisens that harm them, why should we surprised when they sanction outright murder? With all the reparation programs that we have instituted for slavery, forced sterility victims, and the World War II incarceration of Japanese Americans, you would think that we had reached a more enlightened age. We admitted we were wrong to deny people their civil rights and consider certain groups of people expendable. Guess not.
Wednesday, December 10, 2008
I couldn't get to one hundred .... yet.
1) I’ve always wanted to adopt four kids. Biological kids I could take or leave (easy to say if you’re not infertile). After I had one biological child with special needs, I wanted to adopt ten. I realized there are way too many kids out there that nobody wants. Since our second (surprise!) child also has autism, we are waiting on starting the adoption process until he’s a little older. I “borrowed” a third child from my cousin; she has lived with us since 2002.
2) I entered my forties with a whimper instead of a bang a couple years ago. I wish I could tell you that I think forty “rules.” When I told my pastor I was feeling old on my fortieth birthday, he said “I just turned fifty eight.” You gotta appreciate someone who helps you keep perspective at his own expense.
3) PA, DE, NJ, NY, MD, VA, WVA, CA, TX, AZ, IL, GA, MI, OH, OK, NM, NV, UT, ID, MT, MO, IN. I have been in 22 states that I remember. I have lived only in PA, MI, and CA. Most of the others I drove through on our way from MI to CA. I drove from CA to MT and back when I was 21. I wouldn’t mind moving down south because I’m sick of cold weather.
4) I am both the youngest of three and the second youngest of five. God bless blended families. I have full, half and step siblings. I also have an original mom, a stepmom, a foster mom, and a mother in law. Mother’s day is a bitch. I’ve got some great female mentors too.
5) My four siblings are all smarter than me. I think I was born with a reasonable intellect, they just have more. Well, I am better than my sisters at math, and better than my brothers at writing, so I guess I’m the happy medium. But they are all so cool. I hardly ever get to see them, and that sucks.
6) I have 35 first cousins. I couldn’t count the second cousins without getting out the family genealogy book. There are A LOT of them. And we all love to get together.
7) My grandmother and great grandmother lived long into their nineties. Here’s hoping.
8) I am a brittle diabetic. I found this out by having a mini stroke in 2007. This is the second time in my adult life that I have had a major illness to rehabilitate from. Whine bitch moan complain.
9) I love reading. Rather, I love reading GOOD books. Good is defined by my very subjective opinion. Books are like the air that I breathe. I love discussing books too.
10) I watch way too much tv, especially reality tv. I have wasted at least one lifetime doing this. It is definitely rotting what’s left of my brain. When I feel well, I don’t have time to waste on television. But I still love movies, in sickness and in health.
11) I was slow in embracing the internet; now I can’t imagine how I lived without it. I use it for shopping, research, socializing, self expression, education, entertainment and endless amounts of information.
12) I have always believed in eating well, exercising and medicating with herbs (legal ones). Even if I didn’t do it well, I believed in it. Now that I am diabetic, over half my diet is raw fruit and vegetables.
13) I am a closet Christian. I think I am a lousy witness, so I don’t do it even though I’m supposed to. Other Christians often annoyed the hell out of me before I was one, so I try not to do that to others. But my faith is very important to me.
15) I don’t believe in prayer in schools unless it is a private faith based school. I don’t want my kids to be forced to pray to Allah someday if the Muslims are in power, or some other religion that isn’t MINE. I don’t believe in making people of other faiths or non faith pray just because I want to.
16) I like to pray. A lot. I love reading scripture too, especially with an analysis guidebook in hand.
17) I think home education is the best option if you can afford it. Private school is better than public, but even I support basic public education with my votes. I think an educated citizenry is the only way to have and to preserve democracy. Too bad we suck as a country at public education. If you want to find out how to improve it, ask a teacher, not a politician.
18) My growing up life was rocky and stressful, but I thank god that my family impressed upon me the importance of higher education. Just getting my bachelor’s degree was a real struggle (even fully funded), but I have never regretted it; if I have the chance, I’ll still do more.
19) I left home at age 16 and went to college. Sounds tough, right? Nope, my dad paid for all of it. I didn’t even have a driver’s license yet. He bought me driving lessons too.
20) I started out in life as a blond. By age six, my hair had turned brown. I have never had the urge to try blond again, though I would like to get rid of the gray. I am too lazy/cheap to color my hair (so far). My hair is about two feet long now, at first I grew it to donate to charity, but now I’ve heard that they’ve stopped collecting it.
21) If I could have only one cosmetic procedure, my first choice would be to laser off all my excessive body hair. Hurray for genetics. The next thing would be my teeth, which aren’t in bad shape; I would just like them to be better. It would be nice to get rid of my stretch marks too, but I’m not sure anyone has perfected a technique for that. I would also consider a TINY tattoo if my little sister got one with me. But I might stop after the first touch of the needle, so I’d better go first.
22) As for NON cosmetic procedures, I have often wished my eyes could be corrected but I’m too scared to get the laser surgery in case it heals badly. There’s not really anything wrong with the appearance of my nose, but if I was brave and had the money, I would get that corrected too so I could breathe better.
23) I don’t do sports, I don’t follow sports. If I could correct the eyes and the hair thing, I would spend a lot of time in a swimming pool though. And I kind of like tennis. And ping pong. And basket ball. But I don’t do any of them anymore. I used to love cycling and roller skating too, though they’re not exactly team sports.
24) One of my favorite things about my husband is that he doesn’t follow sports, though he used to love playing volleyball and practicing martial arts. Another thing I love is that he doesn’t drink beer, or any alcohol at all. Another thing I like is that he is generally AWESOME. Of course, I’m not crazy about the asperger’s thing. But I’m pretty sure he doesn’t like my diabetes or fibromyalgia either.
25) I have fibromyalgia, which is basically a fancy word for really deep, sore muscle pain much of the time. It causes fatigue. It also has something to do with the “not interested in sports” issue. Any day in which I’m very active or even just do a lot of walking or driving, I really pay for the next day. But sometimes you gotta do it.
26) I was born near Philadelphia, and lived there with my mommy until I entered high school. Then I got shipped off to my Dad’s and spent the next twenty years in California. I developed severe hate for crowds and traffic. I am back near Philly now. I love all the greenery.
27) I had a chance to try both drinking and drugs in middle/high school, and I didn’t like them. I was offered cocaine in college, but I just wasn’t interested. I thank god I wasn’t inspired to go down that road. I had other vices, though, but to protect the innocent, I won’t discuss them. But I am nonetheless a big fan of rock and roll.
28) I though about suicide in both high school and college during two immensely emotionally painful times, both before I was 18. I wish I’d known there was help available.
29) I wish I’d had a relationship with god long before I did, but it wasn’t for a lack of trying. As my much admired Uncle said, “God’s timetable, not ours.” I’m so grateful that it finally happened. Consider me an eager consumer of the opiate of the masses.
30) Some of my favorite scripture, from the time I began my journey, was (and is):
he who has begun a good work in you will finish it
trust in the lord with all your heart, and rely not on your own understanding
I will never leave you nor forsake you
with god all things are possible
the joy of the lord is your strength
nothing in all creation will ever be able to separate us from the love of God
Don’t ask me which version. Pretty sure they’re not King James.
31) I love the Philly suburbs, but I really miss my people in Cali. My dream was to have an inexpensive home in each area, and I ALMOST made it happen, until the 9-11 recession, and we lost our Cali house. At least we kept our PA house! But our crisis was a lot less difficult than a lot of other people suffered at that time.
32) I have loved dogs since I was a little girl, and I still do. Cats are fun too; I’d gladly have both if I could.
33) I love playing the piano. I haven’t had one in my home since I was 16, I really miss it. Not that I have the room for it anyway. A cheap electronic keyboard is just not the same.
34) My biggest dream is to have a big house full of special needs children on a big acreage with an animal rescue. I’d also like to live not too far from a university so I can finish graduate school, and my dh could teach there.
35) We live near the border of Lancaster County (Amish territory) which is one of my favorite places on earth. We are impeded on car trips by horses and buggies quite often. If you have ever seen the TV show “John and Kate Plus Eight,” you will see a lot of the places we also like to go when they take their kids on local jaunts. It is also the location where much of the movie “Witness” was filmed. Sadly, we are also very close to the location where a gunman shot up a room full of Amish school children a couple years ago. I can’t pass by there without thinking about it.
36) My favorite color is lavender, followed by royal purple. My mother loves lavender too.
37) I stopped wearing jewelry during my first pregnancy, and haven’t done it since. Something about my body chemistry changed that made metal an irritant. I only ever really wore a watch and earrings, but I did love both, and now miss both. It’s hard for a control freak to live without a watch.
38) Snow is pretty but it’s really crap to drive in. I’m not a big fan of driving in the rain either. I’m not a big fan of driving PERIOD. My husband and I fight over who has to drive when we go out.
39) I love live folk music in coffee shops. I am also a metal fan, but only on my stereo. I don’t like to be in a crowd of metal fans. I don’t like to listen to classical music nearly as much as playing it. I’m embarrassed to admit that I like pop music too. I dislike rap though both my autie boys enjoyed it a young age. I love contemporary praise and worship music too, especially at my church.
40) I can’t sew, knit or crochet. I will sew on a button, but it will look cruddy. I wouldn’t mind learning, but it’s far down on the list. I NEVER iron, though I do most of the laundry in the house.
41) You know how some women collect shoes of purses? I have a thing for coats and jackets. I have no idea why. I hardly ever wear more than a few of them.
42) My second favorite hobby next to reading is taking pictures of people I know. I love to edit them and post them up to myspace, but I don’t keep it updated as much as I’d like. I used to love scrap booking before I had children, or I should say I love scrap booking and would still do it if I had the time and organization. A piano would surpass my camera for use if I had one.
43) I have been a big General Hospital fan since I was a little girl, but I haven’t watched it in like ten years. No time. I guess I could tape it and watch after bedtime; too much effort.
44) My first job was as a newspaper carrier at eleven years old for almost three years. I hated it. It taught me a lot of valuable lessons (I hate admitting my dad was right about that). Back in those days, we walked up to people’s doors and collected money, often going inside. NO WAY would I let my eleven year old daughter do that now. Not that I have one. But I wouldn’t even let my 21 year old daughter do it.
45) My next job was as a clerk in a low budget department store during my freshman year at UCLA. I hated that too, but it gave me a lot of motivation for completing college. I met lots of middle aged people there who hadn’t finished their education.
46) My third job was booking talent for children’s birthday parties and frat boy bachelor parties. Talk about interesting, weird, sometimes scary, and occasionally gross.
47) I transferred from the UC system to the CSU system after two years because I couldn’t stand the rich spoiled shallow students I kept meeting who were there to party. I should have looked harder for the ones who were serious about their education. I regretted transferring almost immediately after I discovered I was trading seventeen libraries for ONE. I should have tried hanging out with the graduate students instead. But the new program was practical and the students were serious and hard working, most with jobs. That part I loved.
48) I am not a gifted cook, and I don’t have the money for luxurious food anyway. Now that I have diabetes, our diet is more streamlined than ever. My poor family basically gets the same seven dishes rotated every week. But I get no complaints – I tell them they are welcome to make a pb and j if they don’t appreciate what I make. Well that’s not entirely true, my six year old usually complains everyday that he doesn’t like what I made, and then he eats it. He’s not a fan of pb and j.
49) My ideal decorating style would be plain furniture with massive amounts of filled bookcases and oil paintings of impressionist landscapes with lots of lavender and purple. I would have an entire large wall devoted to family and friend portraits though. The carpets and drapes would not draw attention to themselves. I love to decorate for holidays too. I really enjoy arts and crafty things that people make for me.
50) We consider ourselves very blessed though simple living is the name of the game. The only way I can afford to be a stay at home mom is to budget very carefully and balance the checkbook to the penny. We have lots of debt and no savings thanks to medical bills, a couple extended periods of unemployment and losing our first house after 9-11. Supposedly, we have GOOD health insurance. We both had plenty of school debt coming into the marriage. We have an extremely modest house (can be put on wheels) and two very old cars. But it’s worth any lack of luxury to be home with my asperger boys.
I don't really stop at fifty, I am a work in progress.....
2) I entered my forties with a whimper instead of a bang a couple years ago. I wish I could tell you that I think forty “rules.” When I told my pastor I was feeling old on my fortieth birthday, he said “I just turned fifty eight.” You gotta appreciate someone who helps you keep perspective at his own expense.
3) PA, DE, NJ, NY, MD, VA, WVA, CA, TX, AZ, IL, GA, MI, OH, OK, NM, NV, UT, ID, MT, MO, IN. I have been in 22 states that I remember. I have lived only in PA, MI, and CA. Most of the others I drove through on our way from MI to CA. I drove from CA to MT and back when I was 21. I wouldn’t mind moving down south because I’m sick of cold weather.
4) I am both the youngest of three and the second youngest of five. God bless blended families. I have full, half and step siblings. I also have an original mom, a stepmom, a foster mom, and a mother in law. Mother’s day is a bitch. I’ve got some great female mentors too.
5) My four siblings are all smarter than me. I think I was born with a reasonable intellect, they just have more. Well, I am better than my sisters at math, and better than my brothers at writing, so I guess I’m the happy medium. But they are all so cool. I hardly ever get to see them, and that sucks.
6) I have 35 first cousins. I couldn’t count the second cousins without getting out the family genealogy book. There are A LOT of them. And we all love to get together.
7) My grandmother and great grandmother lived long into their nineties. Here’s hoping.
8) I am a brittle diabetic. I found this out by having a mini stroke in 2007. This is the second time in my adult life that I have had a major illness to rehabilitate from. Whine bitch moan complain.
9) I love reading. Rather, I love reading GOOD books. Good is defined by my very subjective opinion. Books are like the air that I breathe. I love discussing books too.
10) I watch way too much tv, especially reality tv. I have wasted at least one lifetime doing this. It is definitely rotting what’s left of my brain. When I feel well, I don’t have time to waste on television. But I still love movies, in sickness and in health.
11) I was slow in embracing the internet; now I can’t imagine how I lived without it. I use it for shopping, research, socializing, self expression, education, entertainment and endless amounts of information.
12) I have always believed in eating well, exercising and medicating with herbs (legal ones). Even if I didn’t do it well, I believed in it. Now that I am diabetic, over half my diet is raw fruit and vegetables.
13) I am a closet Christian. I think I am a lousy witness, so I don’t do it even though I’m supposed to. Other Christians often annoyed the hell out of me before I was one, so I try not to do that to others. But my faith is very important to me.
15) I don’t believe in prayer in schools unless it is a private faith based school. I don’t want my kids to be forced to pray to Allah someday if the Muslims are in power, or some other religion that isn’t MINE. I don’t believe in making people of other faiths or non faith pray just because I want to.
16) I like to pray. A lot. I love reading scripture too, especially with an analysis guidebook in hand.
17) I think home education is the best option if you can afford it. Private school is better than public, but even I support basic public education with my votes. I think an educated citizenry is the only way to have and to preserve democracy. Too bad we suck as a country at public education. If you want to find out how to improve it, ask a teacher, not a politician.
18) My growing up life was rocky and stressful, but I thank god that my family impressed upon me the importance of higher education. Just getting my bachelor’s degree was a real struggle (even fully funded), but I have never regretted it; if I have the chance, I’ll still do more.
19) I left home at age 16 and went to college. Sounds tough, right? Nope, my dad paid for all of it. I didn’t even have a driver’s license yet. He bought me driving lessons too.
20) I started out in life as a blond. By age six, my hair had turned brown. I have never had the urge to try blond again, though I would like to get rid of the gray. I am too lazy/cheap to color my hair (so far). My hair is about two feet long now, at first I grew it to donate to charity, but now I’ve heard that they’ve stopped collecting it.
21) If I could have only one cosmetic procedure, my first choice would be to laser off all my excessive body hair. Hurray for genetics. The next thing would be my teeth, which aren’t in bad shape; I would just like them to be better. It would be nice to get rid of my stretch marks too, but I’m not sure anyone has perfected a technique for that. I would also consider a TINY tattoo if my little sister got one with me. But I might stop after the first touch of the needle, so I’d better go first.
22) As for NON cosmetic procedures, I have often wished my eyes could be corrected but I’m too scared to get the laser surgery in case it heals badly. There’s not really anything wrong with the appearance of my nose, but if I was brave and had the money, I would get that corrected too so I could breathe better.
23) I don’t do sports, I don’t follow sports. If I could correct the eyes and the hair thing, I would spend a lot of time in a swimming pool though. And I kind of like tennis. And ping pong. And basket ball. But I don’t do any of them anymore. I used to love cycling and roller skating too, though they’re not exactly team sports.
24) One of my favorite things about my husband is that he doesn’t follow sports, though he used to love playing volleyball and practicing martial arts. Another thing I love is that he doesn’t drink beer, or any alcohol at all. Another thing I like is that he is generally AWESOME. Of course, I’m not crazy about the asperger’s thing. But I’m pretty sure he doesn’t like my diabetes or fibromyalgia either.
25) I have fibromyalgia, which is basically a fancy word for really deep, sore muscle pain much of the time. It causes fatigue. It also has something to do with the “not interested in sports” issue. Any day in which I’m very active or even just do a lot of walking or driving, I really pay for the next day. But sometimes you gotta do it.
26) I was born near Philadelphia, and lived there with my mommy until I entered high school. Then I got shipped off to my Dad’s and spent the next twenty years in California. I developed severe hate for crowds and traffic. I am back near Philly now. I love all the greenery.
27) I had a chance to try both drinking and drugs in middle/high school, and I didn’t like them. I was offered cocaine in college, but I just wasn’t interested. I thank god I wasn’t inspired to go down that road. I had other vices, though, but to protect the innocent, I won’t discuss them. But I am nonetheless a big fan of rock and roll.
28) I though about suicide in both high school and college during two immensely emotionally painful times, both before I was 18. I wish I’d known there was help available.
29) I wish I’d had a relationship with god long before I did, but it wasn’t for a lack of trying. As my much admired Uncle said, “God’s timetable, not ours.” I’m so grateful that it finally happened. Consider me an eager consumer of the opiate of the masses.
30) Some of my favorite scripture, from the time I began my journey, was (and is):
he who has begun a good work in you will finish it
trust in the lord with all your heart, and rely not on your own understanding
I will never leave you nor forsake you
with god all things are possible
the joy of the lord is your strength
nothing in all creation will ever be able to separate us from the love of God
Don’t ask me which version. Pretty sure they’re not King James.
31) I love the Philly suburbs, but I really miss my people in Cali. My dream was to have an inexpensive home in each area, and I ALMOST made it happen, until the 9-11 recession, and we lost our Cali house. At least we kept our PA house! But our crisis was a lot less difficult than a lot of other people suffered at that time.
32) I have loved dogs since I was a little girl, and I still do. Cats are fun too; I’d gladly have both if I could.
33) I love playing the piano. I haven’t had one in my home since I was 16, I really miss it. Not that I have the room for it anyway. A cheap electronic keyboard is just not the same.
34) My biggest dream is to have a big house full of special needs children on a big acreage with an animal rescue. I’d also like to live not too far from a university so I can finish graduate school, and my dh could teach there.
35) We live near the border of Lancaster County (Amish territory) which is one of my favorite places on earth. We are impeded on car trips by horses and buggies quite often. If you have ever seen the TV show “John and Kate Plus Eight,” you will see a lot of the places we also like to go when they take their kids on local jaunts. It is also the location where much of the movie “Witness” was filmed. Sadly, we are also very close to the location where a gunman shot up a room full of Amish school children a couple years ago. I can’t pass by there without thinking about it.
36) My favorite color is lavender, followed by royal purple. My mother loves lavender too.
37) I stopped wearing jewelry during my first pregnancy, and haven’t done it since. Something about my body chemistry changed that made metal an irritant. I only ever really wore a watch and earrings, but I did love both, and now miss both. It’s hard for a control freak to live without a watch.
38) Snow is pretty but it’s really crap to drive in. I’m not a big fan of driving in the rain either. I’m not a big fan of driving PERIOD. My husband and I fight over who has to drive when we go out.
39) I love live folk music in coffee shops. I am also a metal fan, but only on my stereo. I don’t like to be in a crowd of metal fans. I don’t like to listen to classical music nearly as much as playing it. I’m embarrassed to admit that I like pop music too. I dislike rap though both my autie boys enjoyed it a young age. I love contemporary praise and worship music too, especially at my church.
40) I can’t sew, knit or crochet. I will sew on a button, but it will look cruddy. I wouldn’t mind learning, but it’s far down on the list. I NEVER iron, though I do most of the laundry in the house.
41) You know how some women collect shoes of purses? I have a thing for coats and jackets. I have no idea why. I hardly ever wear more than a few of them.
42) My second favorite hobby next to reading is taking pictures of people I know. I love to edit them and post them up to myspace, but I don’t keep it updated as much as I’d like. I used to love scrap booking before I had children, or I should say I love scrap booking and would still do it if I had the time and organization. A piano would surpass my camera for use if I had one.
43) I have been a big General Hospital fan since I was a little girl, but I haven’t watched it in like ten years. No time. I guess I could tape it and watch after bedtime; too much effort.
44) My first job was as a newspaper carrier at eleven years old for almost three years. I hated it. It taught me a lot of valuable lessons (I hate admitting my dad was right about that). Back in those days, we walked up to people’s doors and collected money, often going inside. NO WAY would I let my eleven year old daughter do that now. Not that I have one. But I wouldn’t even let my 21 year old daughter do it.
45) My next job was as a clerk in a low budget department store during my freshman year at UCLA. I hated that too, but it gave me a lot of motivation for completing college. I met lots of middle aged people there who hadn’t finished their education.
46) My third job was booking talent for children’s birthday parties and frat boy bachelor parties. Talk about interesting, weird, sometimes scary, and occasionally gross.
47) I transferred from the UC system to the CSU system after two years because I couldn’t stand the rich spoiled shallow students I kept meeting who were there to party. I should have looked harder for the ones who were serious about their education. I regretted transferring almost immediately after I discovered I was trading seventeen libraries for ONE. I should have tried hanging out with the graduate students instead. But the new program was practical and the students were serious and hard working, most with jobs. That part I loved.
48) I am not a gifted cook, and I don’t have the money for luxurious food anyway. Now that I have diabetes, our diet is more streamlined than ever. My poor family basically gets the same seven dishes rotated every week. But I get no complaints – I tell them they are welcome to make a pb and j if they don’t appreciate what I make. Well that’s not entirely true, my six year old usually complains everyday that he doesn’t like what I made, and then he eats it. He’s not a fan of pb and j.
49) My ideal decorating style would be plain furniture with massive amounts of filled bookcases and oil paintings of impressionist landscapes with lots of lavender and purple. I would have an entire large wall devoted to family and friend portraits though. The carpets and drapes would not draw attention to themselves. I love to decorate for holidays too. I really enjoy arts and crafty things that people make for me.
50) We consider ourselves very blessed though simple living is the name of the game. The only way I can afford to be a stay at home mom is to budget very carefully and balance the checkbook to the penny. We have lots of debt and no savings thanks to medical bills, a couple extended periods of unemployment and losing our first house after 9-11. Supposedly, we have GOOD health insurance. We both had plenty of school debt coming into the marriage. We have an extremely modest house (can be put on wheels) and two very old cars. But it’s worth any lack of luxury to be home with my asperger boys.
I don't really stop at fifty, I am a work in progress.....
Survey: appropriate education for aspie's
One very famous book author with asperger's syndrome, who I have already referenced in this blog, asked his readers to provide him with input for speaking to a group of educators concerned with increasing student achievement. Apparently autistic students aren't doing so well in traditional public schools. Is this a great surprise to anyone who has a child on the spectrum? Anyway, this was my suggestion:
I think the children's voices really need to be heard. Usually they are able to communicate, if not verbally, in other ways, what works for them and helps them to maximize their success. My guess is that most children with a spectrum diagnosis DO NOT appreciate mainstreaming, but why not ask them, or let them show you? And other volatile environments, like a school bus, hallways, or cafeterias, are often recipes for disaster because the stimulation is so overwhelming. When meltdowns happen, learning isn't.
Our state offers publicly funded cyber schooling, and that is a big hit with my aspie teen. Another cyber school we are considering has a large aspie population by default, this was a development the administration wasn't expecting. But one of their teachers told me that this appears to be a method by which aspies are able to thrive because it cuts out so many of the negative aspects of a traditional brick and mortar school for those students. It also utilizes "block" scheduling, which allows students to focus on fewer subjects in greater depth at one time. My son has asked me to transfer him to that school for that reason.
A venue for social skills is important too, critical even, but only if it's a POSITIVE experience for the individual. Negative social experiences generally lead to academic failure and withdrawal. Rarely in "the real world" is an adult forced to stay in a negative social environment. What educators often think should be a positive social environment is just the opposite for a kid on the spectrum.
My concern especially is those teachers who tolerate bullying, because the autistic person's behavior is considered purposefully negative, rather than typical or unavoidable for them. To me, this like allowing a deaf person to be ostracized since they are being "bad" for not listening. Note the teacher in Florida who had her students each voice how much they disliked their autistic classmate's behavior as a group to his face in a "Survivor" style.
Teachers who are expected to teach autistic children need to be specifically educated about it, no question. If someone used the word "unmotivated" to describe my child, I would tell them, "why would you expect him to be?" Those are not appropriate standards for our children, and the teachers need to understand that.
More than that, as the population of people on the spectrum continues to grow at an exponential rate, the other students need to be specifically educated about neurodiversity, and not just "tolerance", but acceptance. Especially in districts where mainstreaming is still considered the preferable method of education, the other students NEED that help in understanding their autistic classmates.
I think the children's voices really need to be heard. Usually they are able to communicate, if not verbally, in other ways, what works for them and helps them to maximize their success. My guess is that most children with a spectrum diagnosis DO NOT appreciate mainstreaming, but why not ask them, or let them show you? And other volatile environments, like a school bus, hallways, or cafeterias, are often recipes for disaster because the stimulation is so overwhelming. When meltdowns happen, learning isn't.
Our state offers publicly funded cyber schooling, and that is a big hit with my aspie teen. Another cyber school we are considering has a large aspie population by default, this was a development the administration wasn't expecting. But one of their teachers told me that this appears to be a method by which aspies are able to thrive because it cuts out so many of the negative aspects of a traditional brick and mortar school for those students. It also utilizes "block" scheduling, which allows students to focus on fewer subjects in greater depth at one time. My son has asked me to transfer him to that school for that reason.
A venue for social skills is important too, critical even, but only if it's a POSITIVE experience for the individual. Negative social experiences generally lead to academic failure and withdrawal. Rarely in "the real world" is an adult forced to stay in a negative social environment. What educators often think should be a positive social environment is just the opposite for a kid on the spectrum.
My concern especially is those teachers who tolerate bullying, because the autistic person's behavior is considered purposefully negative, rather than typical or unavoidable for them. To me, this like allowing a deaf person to be ostracized since they are being "bad" for not listening. Note the teacher in Florida who had her students each voice how much they disliked their autistic classmate's behavior as a group to his face in a "Survivor" style.
Teachers who are expected to teach autistic children need to be specifically educated about it, no question. If someone used the word "unmotivated" to describe my child, I would tell them, "why would you expect him to be?" Those are not appropriate standards for our children, and the teachers need to understand that.
More than that, as the population of people on the spectrum continues to grow at an exponential rate, the other students need to be specifically educated about neurodiversity, and not just "tolerance", but acceptance. Especially in districts where mainstreaming is still considered the preferable method of education, the other students NEED that help in understanding their autistic classmates.
Tuesday, December 9, 2008
Denis Leary Autism controversy
Ok, so Denis Leary recently wrote a "humor" book, whose title I don't want to print here, because I already feel like I am giving it too much publicity to discuss it at all. He includes a chapter devoted to parents who seek to inaccurately have their children diagnosed with autism on purpose because this somehow allows them not to take responsibility for their children's negative behavior. Apparently he believes this is a frequent occurence. This has created quite an uproar in the autism community, people who are understandably offended by the notion that they would deliberately wish this diagnosis on their children just so they can say "I'm not a bad parent, my child has autism." Some people have asked me what I think about this as a mother of two children with autism. Well I think a lot, but Denis Leary is so utterly wrong that there's nothing there to debate. I just see that it's one more example of the enormous lack of autism awareness in our society, and what harm it causes.
I read the whole autism chapter by Denis Leary on another autism blog, and I have to say, his defense that his comments were “taken out of context” is full of crap. The idea that the reason there is such a “huge boom” in autism rates is because parents are purposely seeking low level diagnoses is SO far off the mark, it couldn’t possibly be funny in any context whatsoever. The last thing the autism community needs to be marginalized yet again, as if the epidemic isn’t REALLY happening, so no one has to take any responsibility to try to stop it or contain it. We parents just need to stop complaining since we’re too inattentive to parent our lazy, dumb kids. The way he keeps trying to excuse himself is sickening, instead of just stepping up and admitting he doesn’t know that much about autism. That if you know one kid with autism, you DON’T know them all. If he had done that, it would have maybe helped spread awareness about autism, but it really doesn’t seem like there’s any way to redeem this situation. Once again attributing autism (or “fake” autism) to bad parenting or parents’ recreational drug use takes us right back to Bruno Bettelheim blaming “refrigerator” moms for their child’s diagnoses of autism in the fifties.
I think his commentary also marginalizes all children with learning disabilities whose numbers are also rapidly increasing. If we don’t acknowledge soon how our toxic environment is causing problems for everyone, we will soon have a financial crisis in this country that far outstrips our current corporate/industry national economic disaster. There won’t be any amount of bailout that will compensate.
I also was offended by his insult to John Elder Robison, who has not only made a very significant contribution to society with the work that he’s done career wise, but has also made an ENORMOUS contribution to society by writing “Look Me In the Eye” so that the rest of us can understand a little better what someone with Asperger’s feels and thinks. Just one person, mind you, but something a lot of people can relate to.
I was a Denis Leary fan too.
I read the whole autism chapter by Denis Leary on another autism blog, and I have to say, his defense that his comments were “taken out of context” is full of crap. The idea that the reason there is such a “huge boom” in autism rates is because parents are purposely seeking low level diagnoses is SO far off the mark, it couldn’t possibly be funny in any context whatsoever. The last thing the autism community needs to be marginalized yet again, as if the epidemic isn’t REALLY happening, so no one has to take any responsibility to try to stop it or contain it. We parents just need to stop complaining since we’re too inattentive to parent our lazy, dumb kids. The way he keeps trying to excuse himself is sickening, instead of just stepping up and admitting he doesn’t know that much about autism. That if you know one kid with autism, you DON’T know them all. If he had done that, it would have maybe helped spread awareness about autism, but it really doesn’t seem like there’s any way to redeem this situation. Once again attributing autism (or “fake” autism) to bad parenting or parents’ recreational drug use takes us right back to Bruno Bettelheim blaming “refrigerator” moms for their child’s diagnoses of autism in the fifties.
I think his commentary also marginalizes all children with learning disabilities whose numbers are also rapidly increasing. If we don’t acknowledge soon how our toxic environment is causing problems for everyone, we will soon have a financial crisis in this country that far outstrips our current corporate/industry national economic disaster. There won’t be any amount of bailout that will compensate.
I also was offended by his insult to John Elder Robison, who has not only made a very significant contribution to society with the work that he’s done career wise, but has also made an ENORMOUS contribution to society by writing “Look Me In the Eye” so that the rest of us can understand a little better what someone with Asperger’s feels and thinks. Just one person, mind you, but something a lot of people can relate to.
I was a Denis Leary fan too.
Monday, December 8, 2008
Christmas survey
When do you start Christmas shopping?
I shop all year round, whenever I see a good sale on something that seems like a good gift idea for someone in particular. But I usually end up doing the bulk of it two months prior.
Are you finished shopping?
Not even close.
How many people are you buying for?
Well there's thirty people on my list. I'll be surprised if I get to half of them.
What are you leaving out for Santa?
Whatever I feel like eating, since that's me.
Name 3 things you want for Christmas:
A digital video camera, a better still digital camera, and a treadmill for my big butt. I hate to walk in the cold.
Are you traveling this year?
No. I wouldn't mind traveling on xmas day itself if the plane tix were cheap. But I DID finally buy plane tix (after waiting four years) for the whole family to visit our extended family on the west coast very soon.
What kind of stockings are hung at your house?
Probably won't have any this year because the house is still in post stroke disaster mode.
Do you have a fireplace/chimney?
Not anymore. Love them.
Favorite things to get in your stocking?
Lifesavers book. Though they probably don't come in sugar free, which I need now. Oooo, some sugar free chocolate would be nice.
Any family traditions?
Opening gifts one at a time in a round robin fashion on Christmas morning. I used to have a gingerbread house decorating party every year early in December. I would like to resurrect that. I have taken my kids to a community christmas party the last two years in a row, and I would like to keep doing that. This year they featured a showing of Olive, the other Reindeer. Herr's potato chip factory puts up a spectacular light display at their company hq, and I've taken the kids to see that for the last seven years. Sometimes we have extended family over, or go to their house. When we lived in Cali, we were expected at the 'rents. Dad's on Xmas Eve, In Laws Xmas morn, foster mom's Xmas nite. My bio mom was invited to all three as well. It was exhausting.
What foods does your family have every year at Christmas?
Usually turkey and mashed potatoes.
Who is the most fun to buy for?
My six year old. He appreciates everything the most. His reactions are enthusiastic and genuine.
Who is the easiest to buy for?
My six year old. He likes everything.
Who is the hardest to buy for?
My parents. They have everything, or don't want much.
Who gives the best gifts?
I have one parent that usually gives me books, which I adore. It's usually someone different every year who might surprise me with something very thoughtful. It's never my husband, who hates Christmas shopping. Most years now we agree not to give each other gifts, in order to save what few precious dollars we have on the kids, or we agree to go out on a date to something less than forty bucks.
Any movies/specials you have to watch every year?
I love Christmas Story, the original How the Grinch Stole Christmas, and also The Year Without A Santa Claus, because I love the Heat Miser and the Snow Miser songs.
Who passes out the presents?
That is the perfect job for OCD girl.
Main stores you have shopped at this year:
Thrift stores, dollartree, Kmart.
What kind of tree do you have?
A tiny fake one, that we probably won't put up this year.
What are your 3 favorite ornaments on your tree?
Ones that my mom makes. I love those.
What adorns the top of your tree?
I have a very original handmade crocheted angel tree topper that was not designed for such purpose but we use it anyway. Thanks again mom.
Do you collect anything Christmasy?
If I see cheap ornaments that I like during the year, I will pick them up. That's rare now.
Whose kids are you buying for this year?
Mine, and possibly a few friends who are going through challenges.
Can you name all 9 reindeer?
Yep. Dasher, Dancer, Prancer, Vixen, Comet, Cupid, Donner, Blitzen, Rudolph. Didn't even have to look them up.
Ever watch Ernest Saves Christmas?
No, with no intention or interest.
What's your favorite Christmas drink?
Hot chocolate with marshmellows.
Do you like Eggnog?
No, the thought of raw eggs does not appeal anymore.
What flavor candy canes do you like?
Original peppermint, and some kind of fruity thing. Not chocolate.
When do you take your tree down?
It has stayed over an extra month or more before.
Is Christmas still magical for you?
Not usually. I don't like the total consumerism. And I prefer to worship Jesus all year round.
What is your favorite thing about Christmas?
Happy kids.
Do you donate at Christmas time?
I donate all year round, I don't usually reserve it just for Xmas. This year we donated forty coats to a holiday warm clothing drive, but I would have done it anytime, it just happened to get collected now when the weather turned cold. We never donate as much as I would like.
Do you make sure to remember the TRUE meaning of Christmas?
Not usually. We don't make the effort to talk about it, or do something special. I like the Veggie Tales special about the topic, but we watch it all year round.
How many nativity scenes do you have in your house?
None, but I'm not opposed to them. If my house was less cluttered, I think they are nice decorations for the season.
Have you been naughty or nice?
Depends on what you mean by naughty. And depends on who you ask about nice.
I shop all year round, whenever I see a good sale on something that seems like a good gift idea for someone in particular. But I usually end up doing the bulk of it two months prior.
Are you finished shopping?
Not even close.
How many people are you buying for?
Well there's thirty people on my list. I'll be surprised if I get to half of them.
What are you leaving out for Santa?
Whatever I feel like eating, since that's me.
Name 3 things you want for Christmas:
A digital video camera, a better still digital camera, and a treadmill for my big butt. I hate to walk in the cold.
Are you traveling this year?
No. I wouldn't mind traveling on xmas day itself if the plane tix were cheap. But I DID finally buy plane tix (after waiting four years) for the whole family to visit our extended family on the west coast very soon.
What kind of stockings are hung at your house?
Probably won't have any this year because the house is still in post stroke disaster mode.
Do you have a fireplace/chimney?
Not anymore. Love them.
Favorite things to get in your stocking?
Lifesavers book. Though they probably don't come in sugar free, which I need now. Oooo, some sugar free chocolate would be nice.
Any family traditions?
Opening gifts one at a time in a round robin fashion on Christmas morning. I used to have a gingerbread house decorating party every year early in December. I would like to resurrect that. I have taken my kids to a community christmas party the last two years in a row, and I would like to keep doing that. This year they featured a showing of Olive, the other Reindeer. Herr's potato chip factory puts up a spectacular light display at their company hq, and I've taken the kids to see that for the last seven years. Sometimes we have extended family over, or go to their house. When we lived in Cali, we were expected at the 'rents. Dad's on Xmas Eve, In Laws Xmas morn, foster mom's Xmas nite. My bio mom was invited to all three as well. It was exhausting.
What foods does your family have every year at Christmas?
Usually turkey and mashed potatoes.
Who is the most fun to buy for?
My six year old. He appreciates everything the most. His reactions are enthusiastic and genuine.
Who is the easiest to buy for?
My six year old. He likes everything.
Who is the hardest to buy for?
My parents. They have everything, or don't want much.
Who gives the best gifts?
I have one parent that usually gives me books, which I adore. It's usually someone different every year who might surprise me with something very thoughtful. It's never my husband, who hates Christmas shopping. Most years now we agree not to give each other gifts, in order to save what few precious dollars we have on the kids, or we agree to go out on a date to something less than forty bucks.
Any movies/specials you have to watch every year?
I love Christmas Story, the original How the Grinch Stole Christmas, and also The Year Without A Santa Claus, because I love the Heat Miser and the Snow Miser songs.
Who passes out the presents?
That is the perfect job for OCD girl.
Main stores you have shopped at this year:
Thrift stores, dollartree, Kmart.
What kind of tree do you have?
A tiny fake one, that we probably won't put up this year.
What are your 3 favorite ornaments on your tree?
Ones that my mom makes. I love those.
What adorns the top of your tree?
I have a very original handmade crocheted angel tree topper that was not designed for such purpose but we use it anyway. Thanks again mom.
Do you collect anything Christmasy?
If I see cheap ornaments that I like during the year, I will pick them up. That's rare now.
Whose kids are you buying for this year?
Mine, and possibly a few friends who are going through challenges.
Can you name all 9 reindeer?
Yep. Dasher, Dancer, Prancer, Vixen, Comet, Cupid, Donner, Blitzen, Rudolph. Didn't even have to look them up.
Ever watch Ernest Saves Christmas?
No, with no intention or interest.
What's your favorite Christmas drink?
Hot chocolate with marshmellows.
Do you like Eggnog?
No, the thought of raw eggs does not appeal anymore.
What flavor candy canes do you like?
Original peppermint, and some kind of fruity thing. Not chocolate.
When do you take your tree down?
It has stayed over an extra month or more before.
Is Christmas still magical for you?
Not usually. I don't like the total consumerism. And I prefer to worship Jesus all year round.
What is your favorite thing about Christmas?
Happy kids.
Do you donate at Christmas time?
I donate all year round, I don't usually reserve it just for Xmas. This year we donated forty coats to a holiday warm clothing drive, but I would have done it anytime, it just happened to get collected now when the weather turned cold. We never donate as much as I would like.
Do you make sure to remember the TRUE meaning of Christmas?
Not usually. We don't make the effort to talk about it, or do something special. I like the Veggie Tales special about the topic, but we watch it all year round.
How many nativity scenes do you have in your house?
None, but I'm not opposed to them. If my house was less cluttered, I think they are nice decorations for the season.
Have you been naughty or nice?
Depends on what you mean by naughty. And depends on who you ask about nice.
Sunday, December 7, 2008
INCLUSION, the forever challenge
I don't know how to track back, so if you're really motivated, you can read the post of a lovely young woman, who I think the world of, who is currently a cast member of A Chorus Line, coming soon to Philadelphia.
http://thislifeinwriting.blogspot.com/2008/12/audienceparticipation.html
This was my comment to her post:
As a mother of two autistic kids, you can imagine I have some pretty strong feelings about this. I apologize in advance for the mega long comment, feel free to delete me. So fortunate for me that my kids are high functioning enough to be able to participate in most age appropriate activities without much incident, but I have certainly met plenty of parents who travel in the same circles who aren't as lucky. And I still have to take care of a lot of details that people without special needs kids can't understand in regards to social events. Solutions are really tough.
For one, we definitely need to be better as a society when it comes to inclusion for all of our members who have special challenges, the elderly and physically challenged are very often left out in this way also. Less than forty years ago, there were no public schools for children with special needs, and yet all of us pay taxes into the system. We are definitely talking about institutionalized discrimination, this attitude for sure bleeds over into the private sector.
But the experiences need to be tailored to the individual as well. Just as you would probably not take a newborn baby or a toddler to a swanky restaurant, I would not put my boys in the position of being somewhere that they couldn't appreciate or are unlikely to behave appropriately. You should definitely consider the needs of the performers or the other patrons. For instance, we all love the library, but it is only considerate to be relatively quiet there. My kids are over stimulated by the presence of too many other people, so I go out of my way to take them when I know traffic is going to be lower, and we patronize specifically libraries that cater to children. The problem for us is finding those kind of resources in other kinds of social environments.
In the specific case you were describing, no one on the outside can really judge whether or not this young man was able to truly appreciate your show, but I'm willing to bet the people around him drew an unfavorable conclusion. Few people take the time to learn about special interests that don't affect them personally. I love that you're even thinking about what he might gain from it Jess. I still think about you coaching my oldest boy in the first ever VCF Children's choir, he loved that. I don't usually encourage him to participate in things like that because most of the adults in charge are not tolerant enough.
When my oldest son was little, I took him to plays that were targeted just to small children. I didn't take him to a general audience play (Oklahoma) until he was seven, and even that was approaching the boundaries. I generally pick seats on the aisle in case we need to make a hasty exit. Half way through he got up and started walking toward the stage while the play was still in progress, because he wanted to see how the set was made.
It's such a hard line to draw - we have standards set, and necessarily so, of how people are supposed to behave in certain situations in order to be considerate of the others around them. Yet if an individual is UNABLE to meet those standars, should they always be left out? In a civilized society, I would hate to draw that conclusion.
Jason's idea of special performances to accommodate special groups are WIDELY popular in those communities, yet this option is often not considered. Disneyland has a "gay" night in their park on occasion. Sesame Place has two dates per year that cater especially to children with disabilities, one specifically for autism. You could consider that bad or good; is that inclusion, or is it just another form of discrimination? Aren't we supposed to be working towards acceptance, not segregation? I think there is a strong argument that those special occasions DO demonstrate acceptance, at least for now, because the people who participate are actually more comfortable in those forums as opposed to being "mainstreamed."
I will tell you that I would gladly take my boy to see ACL if there was such a special performance in Philly (if I could afford it!)
My family participated in a week long christian family camp this last summer that was a huge deal for us. The preparation I went through for it was enormous. I felt comfortable making that choice because the counselors were already trained to accommodate campers with special needs, boasting not only a "special needs" week for the mentally challenged, but just the week before our "family" camp, they had a week of autism day camp including children who attended with personal care workers. That had been a really sensitizing experience, and by the time my family showed up, the counselors were very enthusiastic to put their new skills to work. I had attended this camp myself as a child, and I know without the combination of all those variables, I would have unlikely felt comfortable attending.
One thing that really drew me to VCF Barn when I was in the market for a new church back in 2004 was the parents' rooms where one could breastfeed and care for young children while still participating in the service without disrupting it. As it turned out, the constant stream of traffic in and out of the office behind it made it semi chaotic. I was looking forward to the new room built in the new church where the service could be viewed without sharing function with administration. Yet I heard recently that the room was changed to a drop off nursery, so if a parent wishes to nurse a child, they now do so in locations without visual attachment to the worship service. I think that's a shame, but I know when there is limited space and resources, you try to take care of the majority of perceived needs of your congregation.
That's very often the kind of philosophy that finds people with special needs on the outside. I always used to be aggravated when Spock (and here I reveal myself as a closet trekkie) of Star Trek fame used to say "the needs of the many outweigh the needs of the few." That very much marginalizes the same members of society repeatedly. Aren't we more enlightened than that?
A few years ago another old church nearby that my extended family had attended for generations got a new pastor, and he quickly shut down the Sunday night service for lack of heavy enough attendence. I was disgusted with him because I knew at least one person in particular who attended such a service because it was the ONLY way she could. Had the pastor taken her into consideration?
I couldn't help but think of God's promise to Abraham not to destroy Sodom and Gomorrah if he would find even just ten souls that weren't wicked there. I feel pretty sure that if Abraham had kept wittling down the number to even one, that God would have still agreed to spare the cities because he values us all so much. I had at least hoped that the pastor would figure out another way for this one member of his congregation to get her needs met.
For us, I know that large churches exist that have a "noise" room with glass, and that is an option that my ancestors didn't have, so I should be grateful. I attended one such service at Calvary in Orange County CA. But I can't help but feel that my children will be better served in a small church environment than a mega one for which we would have a very long, wearing drive anyway. My goal is for them to participate and build relationships in their own local community as much as possible.
Hopefully this issue, like the environment, is starting to take greater priority in the age to come. I know that with autism on the rise specifically at an astronomic rate, it's an issue that will have to be dealt with. Recently I read a newspaper article written the year after the 2000 census that reported that fifteen percent of school age children now require some kind of special education services. That's roughly one in seven. The autism epidemic is only adding fuel to that fire.
It seems so wrong for me to be happy that there will more likely be more inclusion opportunities for my kids in the future when that probabilty is based on the increased rate of disability. Hopefully we will not only be more sensitive about inclusion and acceptance, but will be inspired as a society to look harder for the causes of why we have so many special needs in the first place.
Why does this issue matter so much? Because the extent to which the "least of these," our brethren, are included in our society often impacts in great ways their level of functioning and contribution. I think you were right to speculate what positive effect ACL might have on him. We can't know, but it might be a lot, especially if it's part of a cumulative effort. And the kind of effect it has ones who accept is profound as well. The people who take care of and include special needs people are changed in ways they can't imagine.
My oldest is now a teenager, and I know that college, career, marriage and family are all possibilities for him if only he gets the right kind of socialization NOW. Recently I was praying about finding a Youth Group environment for him which he might be able to attend independently (meaning without me or his father for a change, although we would still be willing to do that too) with the right kind of leadership and concern from the other participants. Developing independence is so very critical. A month or so later an invitation to youth group popped into my email inbox and I thought, "well lord, is this the answer?"
I contacted the youth leader and explained the situation, and he asked for some time to pray on the situation. It's been two months, and I've had no reply. Not a yes OR a no, or a "we're still thinking about it" or "we need more information."
Sadly, this is a frequent kind of occurence. People are very uncomfortable with this issue, they hate to say no, but they are afraid to say yes. This happens to us and others similarly situated all the time, especially when faith based organizations are involved. And I understand completely. It's a tough line to walk.
Even with two autistic kids, I know that if I sat next to a very disruptive audience member (have done that with drunks and druggies at rock concerts) and had paid a massive amount of money for tickets, I would be fully irked. I might at least ask for tickets for another night or my money back. As the parent, I would be checking to see if there was seating more conducive to my child's needs, but maybe in this case, there wasn't any. Tough line to walk.
http://thislifeinwriting.blogspot.com/2008/12/audienceparticipation.html
This was my comment to her post:
As a mother of two autistic kids, you can imagine I have some pretty strong feelings about this. I apologize in advance for the mega long comment, feel free to delete me. So fortunate for me that my kids are high functioning enough to be able to participate in most age appropriate activities without much incident, but I have certainly met plenty of parents who travel in the same circles who aren't as lucky. And I still have to take care of a lot of details that people without special needs kids can't understand in regards to social events. Solutions are really tough.
For one, we definitely need to be better as a society when it comes to inclusion for all of our members who have special challenges, the elderly and physically challenged are very often left out in this way also. Less than forty years ago, there were no public schools for children with special needs, and yet all of us pay taxes into the system. We are definitely talking about institutionalized discrimination, this attitude for sure bleeds over into the private sector.
But the experiences need to be tailored to the individual as well. Just as you would probably not take a newborn baby or a toddler to a swanky restaurant, I would not put my boys in the position of being somewhere that they couldn't appreciate or are unlikely to behave appropriately. You should definitely consider the needs of the performers or the other patrons. For instance, we all love the library, but it is only considerate to be relatively quiet there. My kids are over stimulated by the presence of too many other people, so I go out of my way to take them when I know traffic is going to be lower, and we patronize specifically libraries that cater to children. The problem for us is finding those kind of resources in other kinds of social environments.
In the specific case you were describing, no one on the outside can really judge whether or not this young man was able to truly appreciate your show, but I'm willing to bet the people around him drew an unfavorable conclusion. Few people take the time to learn about special interests that don't affect them personally. I love that you're even thinking about what he might gain from it Jess. I still think about you coaching my oldest boy in the first ever VCF Children's choir, he loved that. I don't usually encourage him to participate in things like that because most of the adults in charge are not tolerant enough.
When my oldest son was little, I took him to plays that were targeted just to small children. I didn't take him to a general audience play (Oklahoma) until he was seven, and even that was approaching the boundaries. I generally pick seats on the aisle in case we need to make a hasty exit. Half way through he got up and started walking toward the stage while the play was still in progress, because he wanted to see how the set was made.
It's such a hard line to draw - we have standards set, and necessarily so, of how people are supposed to behave in certain situations in order to be considerate of the others around them. Yet if an individual is UNABLE to meet those standars, should they always be left out? In a civilized society, I would hate to draw that conclusion.
Jason's idea of special performances to accommodate special groups are WIDELY popular in those communities, yet this option is often not considered. Disneyland has a "gay" night in their park on occasion. Sesame Place has two dates per year that cater especially to children with disabilities, one specifically for autism. You could consider that bad or good; is that inclusion, or is it just another form of discrimination? Aren't we supposed to be working towards acceptance, not segregation? I think there is a strong argument that those special occasions DO demonstrate acceptance, at least for now, because the people who participate are actually more comfortable in those forums as opposed to being "mainstreamed."
I will tell you that I would gladly take my boy to see ACL if there was such a special performance in Philly (if I could afford it!)
My family participated in a week long christian family camp this last summer that was a huge deal for us. The preparation I went through for it was enormous. I felt comfortable making that choice because the counselors were already trained to accommodate campers with special needs, boasting not only a "special needs" week for the mentally challenged, but just the week before our "family" camp, they had a week of autism day camp including children who attended with personal care workers. That had been a really sensitizing experience, and by the time my family showed up, the counselors were very enthusiastic to put their new skills to work. I had attended this camp myself as a child, and I know without the combination of all those variables, I would have unlikely felt comfortable attending.
One thing that really drew me to VCF Barn when I was in the market for a new church back in 2004 was the parents' rooms where one could breastfeed and care for young children while still participating in the service without disrupting it. As it turned out, the constant stream of traffic in and out of the office behind it made it semi chaotic. I was looking forward to the new room built in the new church where the service could be viewed without sharing function with administration. Yet I heard recently that the room was changed to a drop off nursery, so if a parent wishes to nurse a child, they now do so in locations without visual attachment to the worship service. I think that's a shame, but I know when there is limited space and resources, you try to take care of the majority of perceived needs of your congregation.
That's very often the kind of philosophy that finds people with special needs on the outside. I always used to be aggravated when Spock (and here I reveal myself as a closet trekkie) of Star Trek fame used to say "the needs of the many outweigh the needs of the few." That very much marginalizes the same members of society repeatedly. Aren't we more enlightened than that?
A few years ago another old church nearby that my extended family had attended for generations got a new pastor, and he quickly shut down the Sunday night service for lack of heavy enough attendence. I was disgusted with him because I knew at least one person in particular who attended such a service because it was the ONLY way she could. Had the pastor taken her into consideration?
I couldn't help but think of God's promise to Abraham not to destroy Sodom and Gomorrah if he would find even just ten souls that weren't wicked there. I feel pretty sure that if Abraham had kept wittling down the number to even one, that God would have still agreed to spare the cities because he values us all so much. I had at least hoped that the pastor would figure out another way for this one member of his congregation to get her needs met.
For us, I know that large churches exist that have a "noise" room with glass, and that is an option that my ancestors didn't have, so I should be grateful. I attended one such service at Calvary in Orange County CA. But I can't help but feel that my children will be better served in a small church environment than a mega one for which we would have a very long, wearing drive anyway. My goal is for them to participate and build relationships in their own local community as much as possible.
Hopefully this issue, like the environment, is starting to take greater priority in the age to come. I know that with autism on the rise specifically at an astronomic rate, it's an issue that will have to be dealt with. Recently I read a newspaper article written the year after the 2000 census that reported that fifteen percent of school age children now require some kind of special education services. That's roughly one in seven. The autism epidemic is only adding fuel to that fire.
It seems so wrong for me to be happy that there will more likely be more inclusion opportunities for my kids in the future when that probabilty is based on the increased rate of disability. Hopefully we will not only be more sensitive about inclusion and acceptance, but will be inspired as a society to look harder for the causes of why we have so many special needs in the first place.
Why does this issue matter so much? Because the extent to which the "least of these," our brethren, are included in our society often impacts in great ways their level of functioning and contribution. I think you were right to speculate what positive effect ACL might have on him. We can't know, but it might be a lot, especially if it's part of a cumulative effort. And the kind of effect it has ones who accept is profound as well. The people who take care of and include special needs people are changed in ways they can't imagine.
My oldest is now a teenager, and I know that college, career, marriage and family are all possibilities for him if only he gets the right kind of socialization NOW. Recently I was praying about finding a Youth Group environment for him which he might be able to attend independently (meaning without me or his father for a change, although we would still be willing to do that too) with the right kind of leadership and concern from the other participants. Developing independence is so very critical. A month or so later an invitation to youth group popped into my email inbox and I thought, "well lord, is this the answer?"
I contacted the youth leader and explained the situation, and he asked for some time to pray on the situation. It's been two months, and I've had no reply. Not a yes OR a no, or a "we're still thinking about it" or "we need more information."
Sadly, this is a frequent kind of occurence. People are very uncomfortable with this issue, they hate to say no, but they are afraid to say yes. This happens to us and others similarly situated all the time, especially when faith based organizations are involved. And I understand completely. It's a tough line to walk.
Even with two autistic kids, I know that if I sat next to a very disruptive audience member (have done that with drunks and druggies at rock concerts) and had paid a massive amount of money for tickets, I would be fully irked. I might at least ask for tickets for another night or my money back. As the parent, I would be checking to see if there was seating more conducive to my child's needs, but maybe in this case, there wasn't any. Tough line to walk.
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