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.

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.

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.

who we are

Silk is my name on this blog, it is merely the phonetic sound of the combination of my initials. I am parenting three kids with developmental challenges; 2 bio, 1 borrowed from a cousin. I have heard this referred to as kinship care in the foster care field, but we don't get any board payments, so I'm not sure it's properly used terminology.

I gave birth to my oldest son in 1993; he has asperger's syndrome which wasn't officially diagnosed until 2007. I refer to him as DS (dear son), DS #1, T or T-bone. There might be others, but that's what I remember right now.

I asked T-bone to occasionally write some blog entries with me; he has dysgraphia (has a hard time physically forming letters with a writing implement) and composition is something he really struggles with also. I thought the blog would be a good exercise for him. Even though writing is difficult, he reads like a fiend and has advanced skills in that area.

T's development was average or above average up until age five when he had several vaccines administered at once and immediately regressed to the point where he was diagnosed with symptoms of autism. At the time, my husband and I were unconcerned about this as the damage to his immune system was a much greater concern.

T was very sickly for a year after the vaccine overload, and rather than continue to pull him out of pre school constantly, we decided to home school him. He was exclusively home schooled up until fall 2005 when we enrolled him in a cyber school. This method of instruction is also delivered in the home.

I believe that T was genetically predisposed to be autistic; though there is no doubt in my mind that the vaccines triggered the severity of his symptoms. We were very blessed to be near a doctor who specialized in treating autism as a condition that could be "fixed." I don't know if he's had any complete reversals, but his protocol definitely helped repair T's immune system and move him toward the higher functioning end of the spectrum. This was a MEDICAL protocol; it involved no psychology or behavior management.

T believes that he will be able to finish college, have a career, and a normal family life. He likes creating stories; and wants to make films and video games.

In 2001, my husband, DS #1, and I moved from California to Pennsylvania. I continued the home school program and gave birth to a second son early in 2002. At that point, my cousin asked me to home school her daughter (born 1987) whose own problems were unadressed in the public school system. She has lived with us ever since. I refer to her as DD (dear daughter), OCD girl, and probably a few other things.

DD developed such severe school anxiety after years of trying to cope with OCD, panic attacks, claustrophobia and agoraphobia, without any services or accommodations, that she refused to return to school in eighth grade.

DD, after a combination of home school and cyber school, now has a high school diploma. She started her first college sponsored course in Fall 2008, and eventually wants a career in special education.

Due to the reaction that DS#1 had to vaccines, we decided NOT to vaccinate DS#2. I also refer to him as D. We are NOT anti-vaccine. We just believed that the risk benefit analysis did not merit vaccinating DS#2. I intended to home school DS#2 as well to avoid the risk of exposure to infectious disease in the younger years. But even if I was to place him in a class room setting in the future, I believe the relatively high vaccination rate of the other school age children will protect him in that kind of environment.

Though I have not had a formal evaluation yet, it is clear that DS#2 also has developmental delays. I am almost certain it will prove to be Asperger's Syndrome, just as DS#1 has. Which leads us to....

Through the examination of symptoms that his children have, and the formal evaluation that DS#1 had last year, it has become apparent to my husband that he himself has Asperger's Syndrome. He was formally diagnosed with attention deficit disorder as a fully grown adult in his forties, but we know now that it is only one of many symptoms that add up to Asperger's. He intends to find a neuropsychiatrist who specializes in diagnosing adults, which is a little tricky, so that he can pursue some of the beneficial therapies. Such as learning to communicate better, especially with his wife.

husband survey

1. He's sitting in front of the tv, what is on the screen? most likely the sci fi channel.

2. You're out to eat what kind of dressing does he get on his salad? None - if we go out to eat, the last thing he wants to do is pay for a salad.

3. What's one food he doesn't like? vegetables.

4. You go out to the bar, what does he order? nothing alcoholic. this is something I love about him. If we DID actually go to A BAR, he would order some kind of fruit smoothie if he was getting fancy, otherwise a coke.

5. Where did he go to high school? Carson CA. Why would anybody want to know this unless it was an identity theft kind of thing? What does this proove? Why wouldn't I know where he went to high school? Ask something a little more interesting please.

6. What size shoe does he wear? 7 1/2.

7. If he was to collect anything, what would it be? Junk mail. by default, he collects anything he doesn't want to have to make a decision about keeping or chucking. This includes receipts and mail, any kind of documents, worn out clothes. He used to collect comic books and magic the gathering cards.

8. What is his favorite type of sandwich? roast beef

9. What would this person eat every day if he could? chinese food, or anything with fried rice

10. What is his favorite cereal? Lucky Charms, Count Chocula

11. What would he never wear? a tie, unless forced to by gun point

12. What is his favorite sports team? NONE. Do you read this people? I am the luckiest non sports widow in the world. His favorite sport is martial arts, followed by volley ball. He would rather do them than watch them.

13. Who will he vote for? Well he wanted to vote for Ron Paul, like me, until he dropped off the ballot. So then we weren't sure what to do, because we don't care much for either the Republican or Democratic parties. But then he said, "I think I'll vote for Obama because I'm so sick of hearing people call him 'n1@@*r'. Gotta love that man.

14. Who is his best friend? Me. I mean that. I wish he kept in touch with his old friends more. Next I would pick David, who is our son's godfather. But my dh has a very hard time maintaining friendships. Most people have to meet him more than half way.

15. What is something you do that he wishes you wouldn't do? Make him leave the house occasionally and socialize with others.

16. How many states has he lived in? two, and a trust territory, and a foreign country too.

17. What is his heritage? Filipino - again, what wife doesn't know this about their husband? PUH-lease.

18. You bake him a cake for his birthday; what kind of cake? Fudge brownies with powdered sugar icing and crushed oreos.

19. Did he play sports in high school? martial arts and volleyball, but not FOR his high school

20. What could he spend hours doing? Playing rpg video games or sci fi channel marathons.

21. Favorite color? I don't think he has one. He wears a lot of black and dark blue.

22. What kind of music is on his car stereo presets? None. I'm guessing they are all talk radio.

23. Does he read books/magazines and if so what kinds? Books and magazines, though mostly books. Mostly of the sci fi variety. At least a couple new ones a month. The magazines are probably gaming or computer graphics related.

24. You are in a stadium/hall with your husband. Is it a conference, a sporting event, a concert, or a play/musical? Probably a concert. He's not a fan of big crowds though. He listens to music he would never see live due to the scary fans.

25. He gets to pick his ideal vacation - what is it? Locked in the house with his computer and cable tv. If he HAS to leave, it would be somewhere warm (with an air conditioner nearby) where he can sit on his butt, read a book, and take an occasional swim, and not have to talk to people. If I'm there, then he is also naked in bed a lot.

26. What does he really think of his mother in law? He doesn't have deep relationships with most of our relatives, but he gets along with her just fine. He knows she is a little nutty. He invited her to live with us once, so I guess that's a good sign.

27. How does he truly feel about religion? Well, he believes, but sitting in a crowded church or reading scripture is not his idea of a good time. He was born into a catholic family, and he has an aversion to organized religion or very judgmental people.

28. He gets to start over again in picking a career - would he keep the one he has, or choose something else? Would probably pick something close to what he has, maybe with more of an artisitic flair. Though I'm pretty sure he would have done college completely differently.

29. If you have kids, do you thinkg he would still if he got a do over? If you don't have kids, do you think he wishes that you did? He wanted kids so badly that even though he was totally surprised by what it was actually like, I think he'd still have at least one. I think he just wishes he had been more prepared, more financially stable since I got very sick when our first kid was born, and it was financially devastating.

30. If you guys could go back in time to before you got married, would he still want to? HE would. I think I would have made him live on his own for a little while first instead of going from his parents house to my house.

is it a serious illness?

It starts out the same. I want to lie down and get under a blanket, only getting up to use the bathroom. The next day, I throw up. Then fever, then body aches. Usually a very stiff neck. It's hard to find a position where I'm comfortable. Sometimes I get headaches. Now that it's happened like four times, I feel like "here it comes."

Usually I figure it's going to go away. I don't want to see a doctor. I don't want to talk to anybody. One time it turned into appendicitis, and that was hell. I had to go to a god awful hospital, but I'm glad I didn't die. Getting sick is no fun at all. I wish it didn't happen so easily. I hate it when it stops me from doing the things I like to do, like surfing the internet and reading my language books.

I am obsessed with learning languages. I think it's part of my asperger's. I just think it's fun, like a new game. I like learning new ways for expressing ideas. Learning new languages gives me a new perspective. I'm really good at learning new languages. When I start learning, I usually start with learning the pronouns and then the verb conjugations. Once I’ve done that, I start learning the other parts of speech. After I’ve learned the basics of the language’s grammar, I just focus on learning new vocabulary words and practice using them in sentences. Afterwards, I just keep going until I've become really good at it. Then, when I've learned enough, I start listening to music in the language I've learned, watching movies in the language and reading books in the language.

Autism for me means being a little fussier, thinking a little differently. I assume people who have minds that don't have autism have an easier time explaining their thinking. My life seems normal to me. But I think other people have lives that are very different. School is a struggle for me. I feel like I need special care taken of me that other people don't need. I am very literal. I have a hard describing things with words. Sometimes I see images, but mostly I just feel a certain way and I can't put it into words. Some people think autism is a serious illness, but for me it's just being different. I would rather be autistic than be really sick or have cancer or be blind or deaf or mute. Actually if I was mute, than no one would expect me to talk. I'm bad at talking. It's awkward. It's kind of ironic, because I love to learn languages. Learning more languages makes me feel less isolated from a lot of things in the world. I think it will open doors for me.

I feel weird. I would like not to be autistic if I had the choice, I think I would be much more comfortable in the world. I get stressed out to easily. I am too anxious. I would be worried about taking medicine for anxiety though, because addicts have terrible lives. I would be afraid that I would be addicted if I took drugs. It's just best to stay away from them. Maybe there will be another kind of cure someday.

mundane yet scary moments

It is 2:30 am and I am up with my teen aspie. Usually I go out of my way to chase him into bed (he is always the last to go, excepting me of course) so I can have a couple or more hours to myself at night. It is all the peace I ever get, so it is precious to me. But now I am keeping a close eye on him. He has a fever of 104, and it's bringing back frightening memories.

Two years ago my husband and I agonized over whether or not to let T travel alone on a plane, as well as let him spend 10 days in Los Angeles (clear across the country) by himself visiting family members. He had just turned thirteen, but was extremely vulnerable. He was a little nervous about the travel aspect, but he really wanted to see his godfather and grandparents; so after much hemming and hawing, we decided to risk it and let him go. We felt so guilty that we hadn't been able to visit L.A. as much as we had originally planned when we had moved away from there five years earlier. We knew it was important for T to be able to maintain his relationships with those key people in his life, so off he went. Very bad decision. VERY bad decision, for which he almost paid with his life.

We were sending T to people who adore him most on earth. But they also didn't know anything about autism, and worse, they didn't want to HEAR anything about autism. Frankly, I don't think we acknowledged it's depth ourselves. I sent mini email lectures, and I just mostly prayed that the odds would be in our favor, and nothing bad would happen. My greatest fear was that T might wander off somewhere, but at age 13 (probably more like 8 or 9 in social maturity years), I figured he would probably be able to communicate well enough with strange adults if necessary to resolve any problems that might arise. We were anticipating that he might have social issues, if anything, but it was emergency illness that reared it's ugly head.

T had been so sick as an infant and toddler in response to his vaccinations, which was, like many other autism parents, our PRIMARY complaint. We didn't even KNOW he was autistic, because his behaviors were very mild, and his developmental delays were not that apparent back at age 6, especially for us first time parents who had no neuro typical children to compare him with. From age 5 to age 6 we often called him the plastic bubble boy, because it seemed like all he needed to become ill at that time was to merely step outside our front door. He had never been a really well child, the first year was consumed with colic, rashes, and food intolerances, he didn't sleep through the night until his third birthday, and it was difficult for him to gain weight. He had HUGE allergy shiners, and some bowel issues. He had gastroesophageal reflux for quite sometime (though they refused to medicate toddlers for this back then). During his fifth birthday "well" exam, in anticipation of possibly starting public school in the fall, we REALLY piled on the vaccines, and that was the final straw that broke the camel's back. T was sick immediately, and then with a new cold or bug every few weeks for a YEAR. I think of that time as our year in "isolation" because we hardly went anywhere or saw anybody.

But after a year of biomedical treatment, T had really rallied, and became much stronger in body and spirit. From age 7 to 8, T had a healthy appetite, collected friends like trading cards, played actively outside riding his bike, running around with the dogs in the yard, took long walks with me, couldn't wait to get in the pool, suddenly started to read like a rocket taking off. I loved it. Then I went and wrecked it by having another baby and moving to the middle of nowhere. Just a few weeks after the baby was born, my dh lost his job, and a few months shy of baby's first birthday, my dh moved back to L.A. for a year to work for his old company in an effort to staunch our financial bleeding. T was absolutely miserable, although our first couple years here, he still had friends and space to roam around. But losing Daddy for an entire year was absolute emotional torture for the boy, and who could blame him?

When dh moved back to us a year later (thank you jesus for that local job), life was a little better, but there was no doubt some damage had been done. For one thing, dh himself was in the throes of a moderate depression thanks to our long separation, and it definitely trickled downhill. Also, T was starting puberty, and though we had noticed some signs of OCD previous to that, suddenly his anxiety level seemed much higher. This was only compounded by my need to have support in his middle school years, and for the first time we enrolled him in a structured cyber school program that was a HUGE adjustment from the "unschooling" we had been practicing ever since birth. By the end of that first school year, T was so stressed out that we were thinking a trip to L.A. seemed like just the ticket for his woes.

We prepared him for the trip with social stories, I put a long list of phone numbers in his wallet, I loaded my cell phone up with minutes and let him borrow it for the trip. I made sure he had his medical insurance card, and I even called his old doctor in L.A. to dig his old records out of the archives "just in case" anything came up. Well something came up alright, and it turned out to be appendicitis, the perforated, life-threatening variety. Worse, since we weren't there with him, there was no one to rate the relevance of his symtoms, including him. T's godfather took him to his old doctor's office, but they brushed off the importance of him seeing his old specific pediatrician (who would have remembered him and his idiosyncracies) and instead pawned T off on a new partner (though old in years, and cranky) who was irritated that his godfather didn't know T's medical history better. Why should he? T was on VACATION for pete's sake, with RELATIVES.

Making the problem much more complex is a common symptom of autism: T doesn't process pain the same way neuro typical persons do. In fact, if something is really bothering him, he wants to crawl into bed under three feet of covers, and not talk to anyone or move. He certainly has a hard time advocating for himself in those situations, and cannot relate the weight or significance of his discomfort to others without a lot of support from someone who knows him very very well. The cranky old man wrote him off as having a stomach bug, and sent him on his way. He had no way of knowing how rare it is for T to complain about anything, or to vomit. A couple days later, T's poor frustrated godfather took him to another doctor at an urgent care facility, who was basically Mr. Don't Give a Damn. I believe he was so generous as to give T a prescription for augmentin, which is one of the worst antibiotics you can give to a child who has an upset stomach. Jackass.

It was killing me. T was talking to me everynight, and telling me how awful he felt. I knew that he was desperately wishing I was there. The bond between us is very very strong, and I felt a hard tug and major internal conflict. Not only could we not afford the astronomical cost of an immediate flight (or one with notice for that matter), but it would have meant leaving my aspie four year old and trying to find coverage for him while I was gone for who knows how long. Of course if I had known that T had appendicitis, you couldn't have kept me away for any reason. But all I knew was that he was miserable, and that two doctors had deemed it unremarkable, and that the other adults around him either didn't have the sense that it was life threatening (though they were definitely concerned), or couldn't convey that to us. It was probably the greatest turmoil of my life.

By the grace of god, T's body worked as it should, and his immune system rallied temporarily to prevent and fight infection. When we got him back on our coast a week after his illness started, I could tell he was a long way from better. I went to our health food pharmacy for supplies and settled in to bring him back. After a few days there was not only no improvement, but a definite decline, and I insisted on taking him into the doctor's office on a weekend. To this day, I credit his pediatrician with saving his life, because she took a short look at him and sent us straight to the emergency room at A.I. Dupont Hospital for Children in Wilmington Delaware. After a few hours of observation, they called in a surgeon for an exploratory procedure.

I refused to consent until I had the chance to speak directly with the main cheese, because the residents around me had not inspired me with confidence, mostly due to their poor ability to communicate. I felt very comforted by the fact that I recognized the surgeon immediately as the same doctor who had performed a life saving surgery on my baby just a few years earlier only six weeks after his birth when we discovered he had a twisted intestine. The surgeon told me he guessed what T's problem was, but couldn't be sure, but at any rate, they would find out when they got in there.

For the next week, I was something of a celebrity while T recovered. Complete strangers stopped me in the hallways of the hospital where my hubby and I alternated to provide 24 hour coverage for T during his stay. Everyone wanted to hear the story and share their amazement at how a child whose appendix had actually perforated and was untreated - across the country no less - was still alive. I'll never forget the look on the surgeon's face when he came out to tell us that T would be ok - it's never a good moment when you see a doctor in shock - but it's also a rare moment when you hear them tell you how wrong they were and that they can hardly believe what they saw.

NO ONE in the operating room was expecting the sight with which they were presented when they cut T open, and I got to hear more gory details than I ever wanted as they told me how they removed a litre and a half of fluid from T's abdomen, and how the inflammation was so bad that it had completely cut off his intestines from passing anything through. In fact, the appendix was so inflamed that they couldn't remove it! The surgeon told me that he cut off the blood supply to the appendix, and that it would probably shrivel up and chances were good it wouldn't even need to be removed. Best of all, by the grace of god, T had not one spot of necrosis. Most of all, they couldn't believe that T wasn't screaming with pain or acting out as they would expect from a child with his condition. I think back now that I should have used that moment to try to raise awareness. T is far from the only child with a disability who can't communicate his symptoms in an expected fashion.

T has never fully recovered since the surgery though it has been more than two years now. It's a big part of the reason that I have decided to try biomedical treatment again. He's constantly fatigued and achy, but he rarely complains. Today's fever is the first in a long time, and it's scary. Most people would probably make note of a temperature of 104. Instead, T stayed in bed, keeping to himself, wanting to be left alone. He was miserable, but it didn't occur to him to call and tell his mom that he didn't feel well. I was actually angry with him, because I took my daughter to the doctor's today, which is some distance from our house. While I was there, I took advantage of the gas expended and ran a few errands in the neighborhood.

I told T to call me if he needed me, but he didn't think it was worth the bother. When I got home too late for his doctor's office hours, I was pretty mad to discover the 104 fever. I could have been home sooner if I'd known, I could have taken him to his doctor, who knows him, who would know if this was something to take very seriously. Instead it's after 4 am now, and I'm afraid to go to sleep, in case I need to run him to the emergency room, where I expect that they will most likely dismiss T unless he's five minutes from death. T almost never gets a fever, but they don't know that. It won't seem unusual to them. T almost never vomits, but it won't concern them, because it's only to be expected if one get's a stomach bug. For anyone else, withdrawing and moaning will seem par for the course. I feel so helpless right now, just keeping my vigil and praying that he bounces right back, or at least doesn't deteriorate rapidly while no one notices that it's critical. Hopefully my husband will be up in an hour, and he can let me get some sleep while he keeps watch until the doctor's office opens. It might be nothing, or it might be everything. I wish I didn't know how fragile life can be.

IEP progress: so far, so good

This is the fourth year T has been enrolled in a cyber charter school (which means he's still schooled primarily in the house, but someone else picks the curriculum, and he has a different teacher for each individual class). This is the first year T has said "school doesn't suck." And it's all because of baby's first Individualized Education Plan.

With educational psychology evaluation in hand, and after fighting to proove that T was not at grade level despite mostly all A's on his report cards, we had our first IEP meeting last June. I knew the real test would come after the school year started, and now that we are almost at the end of the first quarter, I have to say that I'm impressed.

The school has MOSTLY done what they said they would, and most importantly, T doesn't hate school for the first time in four years. YIPPEE! In fact, he's ALMOST enjoying it. Now I know that school doesn't exist for the sheer entertainment value of it, but still, being happy while you're learning I think improves the quantity of what you explore and the quality of what you retain. Anyway, T is working hard and learning a lot, and I finally have a NORMAL amount of contribution as the official home facilitator.

The biggest provision T has is a reduced course load to accommodate his low processing speed. Instead of 8 or 9 classes, this year he has only six; in fact they offered him only five and he ASKED for a sixth. Basically it boils down to he has only two core courses instead of four (language arts and math but no science or social studies), two foreign languages (german and spanish, and he's studying polish, latin and eperantu on his own), something called career awareness (which I thought would be a total mick class but isn't), and a Resource class (which so far IS a mick class). He is supposed to have assignments modified for him if they are too long or ambiguous, and so far that's turning out to characterize his assignments in his career awareness class, but no modifications have been forthcoming. Don't care. He had originally a college prep language arts class, but it was over his head as the materials dealt with complex social issues, so they bumped that down to a special ed class, same grade level. He LOVES it.

So far the teacher asks simple questions about fables and greek myths, and he can handle most of them on his own. She also gives simple prompts for creative writing, and so far T is her favorite pupil in that area. I have to admit I think his stuff is really good, and he has had an enormous challenge in prior years in this area. BIG sigh of relief. I think this class will supply the missing steps or gaps in knowledge or bridge the delays he had, and since he will have extra time to complete high school, he will most likely "catch up" before he graduates. HURRAY!

On to the gifted area - algebra 1. Did I mention T has been completely self taught in math since he was born? So far it looks like he will complete the entire year's work during the first semester, so now I have to see what the school will be willing to do, maybe give him geometry or something during the second semester. Pretty impressive. Some of the credit has to go to the online interactive math curriculum otherwise known as ALEKS. T wasn't picking up the more complex stuff from lectures or text books, if we didn't have ALEKS, I'm sure he'd been behind schedule, not even current much less ahead.

The languages are the most dramatic evidence to me of the gifts of asperger's - the school didn't want him to have two foreign languages at once, but I begged and whined until they gave in, using the rationalization of a balanced schedule or some such nonsense. The truth is he just loves them so much that I wanted him to have them. His assigned resource teacher has been really great and somehow she managed to get the ball rolling.

Officially he has a "resource" class too, but so far this has turned out to be lots of requests for students to check in and discuss any challenges they are having in their other classes. Not too taxing. Probably not worth any credit. Who cares. I'm just glad he has the resource of the teacher, though the IEP itself is taking care of most of T's previous woes.

The career awareness class has very cumbersome assignments with ambiguously worded directions, and the teacher who has it is absolutely outstanding but spread way too thin this year. T keeps emailing him with questions, but they go unreturned. And the resource teacher hasn't been able to reach him herself, so the modification option hasn't been exercised either. I am highly in favor of any course that makes the kids contemplate the future, but so far this one isn't working out real well. You can't have everything! But I would be much more distressed if he wasn't doing well in any of his other courses, the ones that really matter as far as I'm concerned.

But so far overall, the ten to twelve hour days are a thing of the past. T is supposed to have occupational therapy too in order to deal with his dysgraphia, but the only provider they've offered so far is almost an hour's drive away, and that would make him miserable. I've never tried asking his doctor about motion sickness, but I think the school should do better than an hour drive anyway. That is just unreasonable. But that seems like a minor quibble. I am still trying to figure out what language skills to have him evaluated for, I know if I don't ask for just the right thing, I won't necessarily get what he needs.

I was also supposed to be working on getting wraparound services this fall, but I've been so freaking busy with dd's transition to college and continued CBT, not to mention I just barely filed our taxes before the extension deadline a week ago. With all our medical bills from my stroke plus shutting down our non profit ministry, things were a little trickier with our return this year than what I was used to. The good news is that we consulted a tax attorney who also has a daughter with a learning disability, and he has a specialty in fighting schools to compel educational services for special needs kids. Yay! Never know when we might need that.

A couple days ago I was also fortunate enough to meet with a mommy who was an attorney in her previous life; she now runs an LD podcast/blog, and she gave me a million great ideas. If I could figure out how to put links in blogs I would do it, but if you can copy ldpodcast.com into your browser, that should do the trick. I'm getting so much information from it. It was also nice to have grown up conversation without needy children around for a couple of hours too.

choosing DAN and considering going public

Ok, two things, quickly. Well, quick for me, the long winded narcissist.

One is that I have officially decided to seek assistance from a DAN doctor. I think DAN stands for Defeat Autism Now, but what I'm looking for basically is someone who will help my teenage aspie with biomedical treatments. We went down this road almost ten years ago, before I had ever heard of biomedical approaches to autism, before I really even new that my son had autism. Unfortunately, though I considered the treatment a great success and saw HUGE improvements in my son's health, we have moved clear across the country away from the doctor that we used back then.

T has had serious fatigue issues ever since his perforated appendicitis two years ago that almost killed him before we figured out what was going on, just in time for him to have life saving surgery. I would say that he definitely needed the heavy duty antibiotics that he had at the time, but my best guess is that fungus has returned to haunt his poor intestines, and I don't think I can battle it anymore myself without support. His regular doctor is not concerned, he is not used to seeing kids with unusual health problems, and T's last pediatrician suggested that we take him downtown to the big children's hospital in the city far far away which T will just HATE. And frankly, I don't expect them to use non traditional diagnostic tools or treatments. I don't think they'll look for the medical problems that are often markers in autistic patients as far as physical disorders, and I don't expect that they'll have an aggressive, useful protocol either.

So now I have to look for a rare specimen, especially out in the sticks: the elusive DAN doctor. They do not grow on trees. In fact, out here in isolationville, we have a hard time keeping any kind of generalist doctor. I have to drive 45 min just to find a garden variety endocrinologist for my diabetes. So this is going to be a difficult process, one with which I could definitely use help. So now I have another decision to make: do I go public?

I had started this blog with the idea that I would keep our friends and family updated on daily activities and progress with autism issues, as well as have an outlet for frustration that is often encountered in the education process of children with learning disabilities. But I seem not to go in those directions much with the posts. And in casting around for blog examples, I feel like I have a responsibility to some extent to raise autism awareness, and that's a path I'm going down too. I am very interested in reading the blogs of the autism community as it turns out; I'm getting lots of good information from them, and now I'm staring to wonder if I shouldn't become an official member of that community. I find some satisfaction in the notion of adding my voice to theirs, if not in an overtly political way, definitely as a show of support. But do I sacrifice my privacy for this loftier goal?

There is a selfish reason for staying private. Frankly, I think I'm both ignorant (in the uneducated sense) and boring, and drawing attention to myself is opening myself up to criticism I don't feel like hearing. But if I don't risk the bad, I can't have the good.

When I make the decision to go public, I will add a long blog roll of everybody that I read on a regular basis. That's if I can figure out how to do it. One of my favorite blogs is the "diary" of an aspiring teenage writer with asperger's who recently started college; he recently debated the merits of going public with his true identity and asked for input. This was my comment:

I worry all the time about my son, who is only 15 1/2, going public, because there is still so much he needs to learn about social interaction and protecting himself. He is still EXTREMELY vulnerable and incapable of handling a lot of situations where he might be bullied or manipulated. I think he will eventually get past this stage. The fact that you are at University and living outside your parents house (granted, with a lot of support) gives me a lot of hope that my kid will one day do the same. Hopefully this will be in the not too distant future, but I am approaching going public with his identity very cautiously because he is definitely slower in his social development than his academic development.

You were discussing yourself in a couple of earlier posts how there were some challenging incidents since University started regarding socialization. I think going public is definitely going to increase the amount of personal attention you get from strangers. I think you're very smart to consider it very seriously first. John Elder Robison is a fifty year old adult with asperger's who recently got published for a semi autobiographical memoir that was super. He mentions in his blog that touring to promote his book has improved his social skills many times over than anything else he has done in his life this far.

I was wondering whether or not he debated before publishing if he should use his real name. I bet now he is glad he did because he has been received very very well by the autism community AND the general community. I am curious as to whether or not you think your current peers would do the same. It's not just stalkers. Do you think you're ready to handle it?

This is a question I need to answer for myself. I don't know how long it will take. I know I want the benefits, but can I stand the rest?

whenever I feel like whining (which is often)

I was talking on the phone with a neighbor last night, and I was trying to sound upbeat and cheerful, so I repeated one of my oft referred to affirmations:

For every good there is a better, for every bad there is a worse.

I feel sorry for myself. A lot. So I need those kind of pithy sayings to help me keep perspective, I need them to counteract all the times I am saying woe is me. Though I never intended to use my blog to express someone else's story, this really caught my attention today. Talk about perspective:


When John and Robin Kirton first married, they knew they wanted to have a large family -- but like many couples, they had no idea what they were in for. Today, the Kirtons are the parents of six children -- each of whom has been diagnosed with autism. Discovery Health presents an intimate view of life with multiple autistic children in AUTISM x6, an hour-long special premiering Wednesday, October 1, at 8 PM (ET/PT).

To say the Kirtons live modestly would be an understatement. The entire eight-member Kirton family resides in 1,100-square-foot house with a single bathroom located outside of Salt Lake City. Caring for the children's special needs requires round-the-clock supervision, making it impossible for either parent to have a permanent full-time job and causing financial resources to be scarce. Autism x6 takes viewers into the Kirtons' world and offers a view of John and Robin's daily struggle to maintain order in the midst of chaos, where the household can spin out of control the moment they turn their backs.

Considered to be a spectrum disorder, autism ranges from severe to mild -- and the Kirton children span the entire spectrum. Viewers will meet --

-- Mary, 3: Diagnosed with pervasive developmental disorder-not otherwise
specified (PDD-NOS) -- the least severe form of autism

-- Ammon, 4: Diagnosed with classic autism -- the most severe end of the
spectrum

-- Sarah, 6: Diagnosed with classic autism

-- Nephi, 9: Diagnosed with Asperger's syndrome -- a high-functioning form
of autism

-- Emma, 10: Diagnosed with Asperger's syndrome

-- Bobby, 14: Diagnosed with Asperger's syndrome


AUTISM x6 is the portrait of a resilient family coping with the struggles of each day by rolling with the punches and maintaining their sense of humor. The documentary also serves as a profile of the unconditional love that parents feel for their children.

"We did not choose to have autistic children, but they are here," said John. "We love them, and we want to do the best we can for them. That's the right thing to do."

Online at discoveryhealth.com, visitors can learn more about the Kirton family as well as access a variety of resources for more information on autism.


Holy crap. Did I mention that I feel lucky that my sons are at the high end of the spectrum? My husband and I have recently been discussing vasectomy, as not only do we not intend to have any more biological children, not only would pregnancy probably kill me, but because of an ethical dilemma: do we knowingly risk mixing up our genes again when we now know odds are good that we would produce yet another offspring with autism? This is an actual concern of mine, since one of the side effect of diabetes has been turning perimenopausal. Just LOADS of fun. But one of the many concerns of going through menopause is that I don't have a grip on when I'm likely to ovulate, which makes birth control tricky.

But even if I knew for sure it wouldn't kill me, nor damage my health any further, and someone (who could?) give me an absolute guarantee that I would have plenty of years left on this earth to see a newborn baby raised to adulthood, I just don't want to do it. I really wanted at least one girl, even if I never had any more children. And even though we had decided after the birth of son number one that we would never chance pregnancy again (HA! said god), I still longed to have a little girl. When surprise baby number two came along, I thought, maybe here is my chance in the midst of fear to at least have a girl. NOPE. Well at least both my boys are pretty.

Truthfully, if all the other conditions could be met, and someone (again, who?) could also guarantee that I was going to have a girl, I still wouldn't do it. Even though the risk of autism passing to a girl is much less than a boy, I just don't care. I love my kids to death but I would not subject another child to a diagnosis of autism even if the odds are small. I don't give a damn how politcally incorrect that makes me.

Now I realize it may sound like I'm judging the family above. NO WAY! Their children span 11 years, and the oldest three have asperger's. There's a very good chance that they didn't even know the oldest one's diagnosis before their youngest was born. I actually have no idea about this, I just heard of them for the first time tonight. I would imagine in many families there is probably a big incentive to keep trying to have children until you get a typical one anyway. I was just one of those weird people who never wanted biological children, at least not more than one, in the first place, because I wanted to adopt from the massive pool of children in this country (in the world for that matter) that didn't already have parents.

But not only do I not judge those people who had six kids with autism, I feel for them in a big way. I was just moaning to myself about the tiny size of my house, because whatever else my kids need, they definitely really need their own space, and we can't afford to give it to them. Dividing our house by five is so so hard, having to divide it by eight, I can't even fathom how they do it. For every bad there is a worse. I think I'll go count my blessings now.

Is there an Autism for Dummies yet?

I have decided that I need one of those books cleverly titled "the Complete Idiots Guide to Asperger's" or something like it. An article somewhere had gotten my attention about how most new cases of autism are "acquired" now; that you rarely hear a story about a parent whose child has autism from birth nowadays. I don't know if it's true or not, but one reason it got my interest was because somebody said something similar when I was diagnosed with chronic fatigue immune deficiency syndrome ten years ago. And that's just when I was diagnosed; I had the damn thing six years prior and it just wouldn't go the hell away. But while I was researching all my symptoms and looking for treatment, Someone Important (I can't remember) in the field had said that CFIDS was the true "acquired" immune deficiency syndrome as opposed to the epidemic of AIDS caused by the human immunodeficiency virus (HIV).

Well I didn't get the point, quite frankly, of quibbling over semantics like that; as if there wasn't plenty of suffering to go around. But I had a sweet friend who set me straight by saying that yes, actually, I had completely missed the point like an idiot; the relevance of the word acquired was that it wasn't something I had at birth, and yet it wasn't something I "caught" from someone else. But at the same time, it was becoming epidemic. If you think about it that way, it's pretty scary, because if there's no genetic cause, and it's not something you can avoid by contact (like for instance, by wearing a condom), then how can anyone prevent it happening to them? It was especially worrisome in that light since there is no established cure for CFIDS to go along with that unknown cause.

The triggers of CFIDS are still not well known, and are not likely to ever be. CFIDS is not considered life threatening, at least not in the short run, and although it severely compromises quality of life in a lot of cases, since it's not contagious, it's not a big concern of medical researchers. Sadly, this statement appears to be a similarly held attitude about autism, and by the time it changes, I think it will be much too late for an awful lot of people as well as too late to stop the severe drain on our economy, even talking global economy here. I few days ago I read on one of the big established autism group websites that the new statistics for diagnosis are one in every ninety four boys. Holy crap. How can we possibly sustain a hit like that? My kids are PROBABLY going to college, but they are some of the lucky ones. Even if they finish their degrees, I constantly think about whether or not they can sustain the pressures of holding a job. Last week at a disability claim filing seminar I attended, one lady there who works in a community agency says she deals with aspies all the time who have their university education, but have a work history of losing jobs every three to six months.

I had been thinking about how I should look into treatment protocols for my six year old aspie since his older brother had an unsual (as if there's a "usual") treatment for autism that had very beneficial results. But since aspie the third has never been vaccinated, I have a feeling that I need to do more research on what will be appropriate for him. Well, I tell you, I need the cliff notes version. Honest to god, unless you are a scientist or a person of significantly above average intelligence or unlimited energy, the pool of technical data to swim through is going to require a lifeguard's certification. I love my kid, but holy crap I need a brain transplant. I mean, what does the common person do? So many of the blogs I read from autism parents are authors with degrees in law or medicine or freaking investigative journalism. They all seem to have many initials that go after their names. I have a scrawny little B.S. from a publicly funded school that is located in a state that is not known to be at the top of the intellectual hierarchy, and I am not a highly motivated self taught kinda gal. I truly believe my brain has atrophied since college days despite the almost constant stimulation it gets.

Hannah Poling, the one child with autism that has thus far been awarded damages for a link between her diagnosis of autism and a reaction to vaccines is the child of a nurse and a neurologist. I just don't have that fight in me. And yes, some financial support (say, a little bit of social security funds) would be nice since there isn't a lot of money involved at being the stay at home mom of three children with developmental disabilities, although there are lots of costs, but I would be happy to settle for some insurance coverage of treatments to improve their quality of life. If I could understand, and decide on, said treatment, that is. Lordy, looks like I need to go back to medical school. I don't even have the brain power to understand it, much less to get accepted.

Not all people are created equal. We just have a higher chance of being able to apply our brains to good use if we're born with one. Or don't fry it along the way.

I rant in all my posts, but this time on purpose

I am ticked off tonight. As a newbie, I have been trying to learn about the process so that I can blog with the proper etiquette, and I have to say that my personality doesn't fit in very well with the category of my blog which I've come to find out is called "mommyblogging." Whatever. Not too incredibly insulting. There's nothing this society needs more than another label that marginalizes motherhood. We do that just fine without a new label. I have been reading a lot of other blogs in order to figure out how to improve my own, but I just can't seem to give a dang about some soccer mom's snit over how the coach doesn't model sportmanship appropriately for the little minds he's molding. It's all I can do not to use four letter words when I speak or write, I can't work up a sweat about the minor imperfections of your comfortable middle class existence. Not that I don't totally envy your comfortable middle class existence, my hypocrisy is thoroughly consistent. Well it's their blog, they can write whatever they want.

But freedom of speech is getting on my damn nerves. I am so sick of reading about how wrong I am to presume that vaccines have no link with autism. Somebody even had the gall to tell me to my face that I must be wrong when I told them that my son was pretty ok before he had vaccines, and that he had a pretty bad reaction after his shots complete with a quick descent down the spectrum. In fact, this is a common story among parents of children with autism. And even though we all gave our children vaccines on a slightly different schedule, we must ALL BE WRONG, because scientific studies say so. The fact that my son didn't have a diagnosis of autism until well after his fifth birthday when he had a sudden onset of symptoms right after an overload of shots during his "well" check up, I guess that means nothing.

It doesn't come up in conversation very often, but I have had mononucleosis THREE times. Complete with lab tests to prove it. Whenever I have to see a new doctor, and they ask for medical history, I almost hate to tell them, because I already know that my credibility with them is going to take a nose dive. Do you know how many of them have told me it's impossible to get mono more than once? So I guess I'm lying. I guess there's no way that the previously held belief could be faulty, it must be ME. Next you can tell me that there's no such thing as chronic fatigue immune deficiency syndrome. Maybe you could follow that up with a comment on how we shouldn't worry about AIDS spreading to epidemic proportions. And all of us parents who have given our children vaccinations, who thought it would be a good thing, who held no previous prejudice against the danger of vaccines, and then watched our children react and then deteriorate immediately after, I guess it must just be a mass hallucination.

There couldn't possibly be an error in the testing process. I'm sure the fact that there is very little incentive for someone to make that discovery has nothing to do with the fact that it hasn't been found. I don't doubt that it's difficult to establish the mechanism by which vaccines lead to exacerbated symptoms of autism. I'm sure it's a very circuitous path. And I'm sure it isn't the only catalyst in our environment with that capability. But don't tell me that there aren't major forces with a deep interest in making sure that path is never discovered. I guess I'm just supposed to overlook the fact that government agencies, pharmaceutical companies, and pediatricians are all collaborating to convince us to vaccinate and making huge profits from the vaccination process. I was just sitting here trying to think who has a better funded lobby than the pharmaceutical companies. Maybe munitions companies, I don't know. But no one can tell me that they don't have an enormous vested interest in making sure that no scientific connection is ever made between vaccinations and autism.

Hey, guess what, I forgive you. I don't want your frigging money, I just want to know the best way to help my son, thank you. I will go on record here and thank Dr. Michael Goldberg in Tarzana and his not incredibly difficult or expensive protocol for not only stopping a downward spiral but for bringing my son back from the depths of illness. Thank god he decided to treat children as though they've had a major attack on their neuro immune system, and didn't bother to try to convince me that it didn't happen. And guess what? He still believes in vaccinating the kids in his practice, but he actually cares for the ones who have reactions. I am not telling or advocating for anyone NOT to vaccinate their kids, but STOP telling me that what I witnessed with my own two eyes must not be true. I don't wish disability on their kids, but I sure wish they would stop trying to assure me that I must be wrong about mine just because their kids didn't get autism after their vaccines. Yes, I know, some kids have autism that has nothing to do with vaccines. Next they will tell me that cigarettes don't cause lung cancer, because their grandpa smoked his whole life and he never got lung cancer. And someone else had lung cancer that never smoked. But cigarettes still cause lung cancer whether or not someone says they don't.

And what is this politically correct crap about not trying to cure autism? Does anybody really think the kids wouldn't want to get rid of the challenges that they have if they could? If anybody ever came up with a cure for Down Sydrome, is it really unlikely that the parents of those kids wouldn't want to use it? Ok, we are talking about a chromosonal problem in the case of Down Syndrome, and I don't think we are going to see a cure in my lifetime. But there are many organic brain dysfunctions and head injuries for which huge improvements are possible if not cures, and for pete's sake, why not try them? If you're not suffering, fine, don't do it, but let the ones who are suffering try for the cure with your support. Don't try to convince them that they should just be proud of being differently abled. I'm proud of my son everyday, but I would give him any treatment in a New York minute that I thought would help his life not be quite so difficult.

I had a mini stroke last year, and I have been working my butt off to return my level of functioning to the same state before that day, I consider it my OBLIGATION. And it's something I fervently desire. No, there is no shame in disability, but why wouldn't I want to reach my maximum potential if at all possible? Chronic fatigue, AIDS, and autism are only some of the disabilities reaching epidemic proportions. If we keep it coming, pretty soon we will have one person working and paying taxes for every school age child combined with the population of persons receiving social security or public assistance. How can our economy possible sustain that formula even if we want to?

Ok, I need to step down for awhile and cool off. But before I do, here are three of my favorite books which are relevant to tonight's post. I didn't create my blog to market books, but these were really interesting and helpful.


And the Band Played On: Politics, People, and the AIDS Epidemic, by Randy Shilts

Osler's web: Inside the labyrinth of the chronic fatigue syndrome epidemic, by Hillary Johnson

Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery, by Karyn Seroussi

The End and The Beginning

The summer is over. On the last day, my dad took me to the movies to see the Dark Knight. I never get any time alone with my dad anymore, so that was fun. AND I got to go out somewhere WITHOUT my little brother; that was even more fun. It was really good because we never go to the theatre anymore, they are far from where we live and they are very expensive. Usually we rent videos because it's easier to handle my little brother in the house. The movie was really good, one of the greatest of all time. I don't have any trouble staying still like I used to, as long as I'm entertained. If I'm not occupied while I'm sitting down, I'll get back up and pace around and be annoying. For those three hours it was really peaceful. I like having everything peaceful. I often feel cooped up in our little house, even though I know I should get out more, I don't feel like going outside. And I hate car rides.

Today was the first day of school. Some special arrangements were made so that I could have more years at school and less classes during each semester. Now I don't have so much work to do, my mom said I used to put in sixty hours a week. It felt like labor camp. I now have German class, which makes me very happy. I'm really excited about that. I also have the second level of Spanish, an Algebra math class, college prep composition, and a Career class. I'm dreading coming across something really hard, because I know it will eventually happen, but at least I will have more free time this year. The schedule seems very liberal. The best part is that I will have more time for myself, so I can do my own drawing, video gaming, internet surfing etc.

I have a resource teacher this year to help me, and I need all the help I can get. I'm not quite sure how it works. I never thought of asking for help before, whenever I want something done, it never occurs to me to do anything but do it myself. I feel a bit optimistic this year. The other years, I dreaded it. I feel like it will go fine. My mom is looking for a part time on site program for me, and it sounds interesting. I don't know if it will happen this year though. Cyber school is great. Home schooling is good, but it's frowned upon by a lot of people. Cyber school is frowned upon by a lot of the same people too. But if anybody is lucky enough to be cyber schooled, they should keep it. Traditional schools, some are ok, but the others: disaster awaits.

asperger education

Tommorrow my 15 year old aspie starts high school. A year ago he had his first ever evaluation by a school psychologist, and three months ago we had his first ever IEP meeting. Despite problems he had after enrolling in cyber school three years ago, no evaluation was offerred. The special ed director actually told me to attempt accessing therapeutic services through our private health insurance. It took two years of the poor boy working sixty hours a week before I made a big enough stink that they agreed to the evaluation. It was even longer before he got the initial evaluation. I didn't understand our rights, or anything about how the system worked. Honestly, it didn't occur to me that my high functioning boy was entitled to special ed services, including at the very least, a very thorough evaluation. We STILL haven't had that, but at least now I know what I'm looking for.

T's most obvious deficit was in the area of written expression, and even though it took awhile, after three years he has now been assigned a resource teacher to help him with his writing assignments. But we are now running out of time. He needs so much more than help with his writing; there are social skills to work on now that we won't be spending sixty hours a week trying to keep up with academics. There is an important transition to adulthood that is starting to be the top priority on my list. When he finally had his IEP meeting at the end of last school year, I was encouraged that his team included a "transitions" counselor. I didn't know that such a thing existed. But I'm learning.

One thing about the IEP meeting that was a little disheartening was the fact that his newly assigned resource teacher was obviously about to go out on maternity leave. And sure enough, when his new guidance counselor left me a message a few days later to tell me what T's new class schedule would be for the fall, it was all too obvious that the resource teacher had not coordinated any exchange of information with guidance regarding the provisions of the IEP. Not only that, when I tried to contact the guidance counselor later in the summer when I felt sure that he would be returning to the school, I found out that he was reassigned, and at present there is NO guidance counselor for freshman. So knowing that the resource teacher was still out on leave, I called the special ed director and asked for her to please make sure that T's new guidance counselor, whoever that might be, would be sure to take into consideration the IEP provisions which would impact the new roster of classes.

Almost a full week later, I got a voice mail from the resource teacher telling me that she would still be assigned to T, but that she would be working from home until mid November. My heart sank. Although I thought kudo's were owed to the school for consideration to working mothers, I knew from previous experience that reaching their part time special ed coordinator who worked from home also was almost an impossibility. But then things started looking up; an assistant from the guidance department told me that the resource teacher had completely changed T's schedule around, taking into consideration the IEP provisions, and the resource teacher herself returned my phone call promptly, and with babies wailing in the background, had a fruitful conversation with me about T's needs and his new roster of classes. Pulled out at the zero hour, to be sure, since school starts TOMMORROW, and this conversation only took place two days ago, but hey, it's a semi good sign if nothing else. T is actually feeling optimistic about it, and that is a big relief for me.

On a I-don't-know-if-it's-a-good-or-bad-thing note, T was not accepted into the gifted program. They don't tell you the reason why, but I'm hoping that once we get past the beginning of the school year, the director there will be willing to give me some good insight. I had so many doubts about the program that I wasn't upset when we got the rejection letter. I knew at least that he had been very seriously considered. The deal breaker for me was the three day on site component with a long commute. I would have been willing to kill myself for two days, but three would have been very very hard on T (and me), and I wasn't even sure it was really the best fit. I found out that they don't have an arts or music program, and I think T's destiny lies with media arts. He really has told me consistently for the last couple of years that he wants to be creative, and I'm not sure that potential would have been tapped at the gifted program. I am currently contemplating three other programs that might be more appropriate.

One of these programs under serious consideration is attached to his cyber school: a performing arts division. Fortunately this is only two days a week, and is very focused in professional arts. I'm still not sure that it's the best fit, but I will take a close look at it. One nice aspect of T's new IEP is that he will get six years to complete high school instead of four if he wants, and this buys us some extra time to participate in high school programs that might really help him with job skills. We are also definitely looking into a new technical school built nearby that has a computer certified program similar to what T's daddy completed. Since I think computer skills will be so essential to a career in media arts, I feel more certain that this would be a really good fit. And it's only two hours per day, five days a week, short drive, in the afternoons - perfection.

However, it will all depend on the staff there and the accommodations, and how closely they supervise and discipline the other students. One thing for sure I knew about the gifted program, and the performing arts program as well, is that they would both contain exceedingly positive social experiences, as discipline and expectations are both high. This new school serves the five public school districts nearest to where we live, and as such, I am concerned seriously if the discipline standards will be as lax there as they are in the five districts, plus other technical schools available in the county. The other technical schools in the county would be the third option we should check out, unless I want to go the private school route. I have been told repeatedly by our current school's administrators that autistic kids belong in special programs at private schools (far away) that should be paid for by our district of residence. These people hadn't even met T. I didn't trust what they said, and decided on a watchful wait strategy. Sure enough, last March at the open house, I met another teenage boy with aspergers, and his mother, and if anything, he was less high functioning than T, or at least somewhere around the same. An extremely bright kid with lesser discernment as regards to social skills when compared with T. I wish they lived nearby so we could hang with them.

I figured if HE had a decent IEP and was thriving at the school, then why the H should I switch T over to a private school with a long hours and long commute that he would probably hate? Admittedly, since then I have found some private schools specializing in autism that are much closer by, so I would reconsider my stance. But I sure wouldn't let some people who had never even met T tell me what was best for him. One of these same people later told me that he thought I was asking for way more accommodation that T needed. Well which is it, dude? Either T needs to be in a private school, or he's not that needy. Either way, the message is not to subtle; We Do Not Want To Deal With Your Kid's Needs At Our School. Well tough, they had warning when we first came in, and I'm not making T change schools just because THEY don't want to live up to their obligations. TOO FREAKING BAD.

That is all for today. I will post on how the first week with the new IEP goes.

Summer almost gone, Autumn on it's way

As I sit here and sift through the multitude of mind numbing tv series marathons that are the gift of the labor day weekend, I can hardly believe that summer is almost over and school will be starting up again next week. Actually, it will only be starting for one out of three, since DD has graduated high school by the grace of god, but not in time to secure college funding for this fall. I am hoping to find some kind of certificate or adult school program to keep her occupied until we get both accommodations and funding for next semester. Truly, it's probably best that she concentrates on therapy now that she's about to re-enter a class room for the first time in seven years. My six year old has not yet been evaluated for the extent of his autism, so I will not even try to find a program for him. Safety is a major concern for any kind of on site program he might be suited for; he is definitely the wandering off type. So my firstborn 15 year old is now "entering" high school, and we have SOME good news on that front. I am going to save that for my next post.

Beyond my disbelief that summer is gone, I really look forward to the autumn. When I was growing up near Philly, it was always my favorite season, and that hasn't changed since we've moved back here. The weather is the nicest, a welcome relief from the humidity of July and August, and the leaves changing colors in the trees is a breathtaking display of beauty in these parts. Pumpkin patch season begins in September, and goes beyond Halloween. I LOVE Halloween, and I love pumpkin patches too, now more than ever. October is my favorite month out of the year, the least of which reasons is that it contains my birthday. But all the best free events for the kids seem to occur around that time, the libraries and art association and churches and commercial farms and the malls explode with kid friendly activities, most of which are inclusionary. I mean, out of the five million things to choose from, I can always find something for my asperger triplets (44, 15, and 6) as well as OCD girl. It sort of sounds like a super hero group, but anyway, the fun is everywhere.

Here is one of my old blogs from last year about how the new owners turned my grandmother's farm into a pumpkin patch; it is very aspie and kid friendly, and we will try to make it back every year:

START

Today my DH and I took the kids up to see my grandmother's farm. More appropriately, it was better known as my grandfather's farm, since he was the one who worked it back before he retired and rented out the farming acres. What my grandmother loved more than anything about the farm were the non-field acres, about thirty odd acres of woods. We are talking the kind of tree groupings that block out the sun. She actually had to weed them out every so often as they matured, and brought in a lumber company to do it. There were trails through those woods, and they were a source of delight to children, grandchildren and great grandchildren. The woods were great for berry picking, and target practice to those in the clan with hunting licenses. But more than anything, the woods were the perfect sanctuary to the birds that my grandmother loved almost as much as members of her family. We would walk back there in singles or groups, but someone almost always was carrying a pair of binoculars around their necks.

After my grandfather died in 1981, my grandmother continued to rent out the farming acres. But she wouldn't let anyone touch those trees. My grandfather had already sold off a few large portions of the original acres long before to fellow farmers until he and my grandmother were down to under ninety acres, and that's how it remained until her death in March 2005. Some of the sold off acres eventually made it into hands of real estate developers, and as a staunch pro agriculture advocate, my grandmother had many discussions over the years pertaining to how best preserve her remaining land as farm.

I was not privy to, nor did I ask, about how she finally accomplished this. I know if I asked one of my uncles, they could tell me about an arrangement she made with the government and in her will to encumber the land as a farm after her passing. But it seems like any government deals can change over time, and it was still with some sorrow that the estate was probated and the farm was sold to new owners.

Well if my grandmother was standing next to us today, I know that she would tell me that she couldn't be more pleased. Not only was the farm sold to a nearby farming family, they have turned it into a publicly accessible Pumpkin Patch and Christmas Tree Farm. 2006 was their debut year for the pumpkins, and since my sister was here from Los Angeles last year visiting in October, it seemed like the perfect tourist attraction. I have pix from that trip posted on Flickr, guess it's time to upload them here as well. God bless my sister who had her camera handy that day, we were using a new camera, and accidently erased all the pics we had from that day. I was crushed. But her photos were great and I will post them along with all the pix I took today.

They had even more attractions this time around. The weather was beautiful today (we are having summer in October, truly) as we pulled into the parking lot around 5 pm of Clark's Pick-Your-Own Pumpkin Patch. As we parked in the yard behind grandma's house, I saw my old tractor tire sand box propped up against a tree. This perked me up immensely, don't ask me why. The new residents of the house have been very busy, there were beautiful new windows and a sharp looking new roof.

We immediately got on the hay ride, D loves riding behind the tractors and he's been looking forward to it all year. The tractor pulled us down to the neighboring fields where they had not only a large field of pumpkins, but had also plowed out a three acre corn maze. DH and the kids took the video camera into the maze while I stayed behind and chatted with the young lady manning the booth. She told me she and her bf Joe Clark were the ones living at the house and doing all the rehab work. I think she was afraid that I would be offended at how they had to gut the house. I assured her that we were well aware of how much the house had deteriorated over the years as it became very taxing for my grandmother to undertake large repair projects in her most senior years.

I know my grandmother would be very pleased that not only was the farm transformed into a working agricultural concern, but they are tree planters! In addition to the pumpkins, the real business is fir trees. In fact, even though it is only the first week of October, the pumpkins are already in low supply. I hope Clark's is very popular for years to come, and that any locals reading this blog will get down there to show them some love. We plan to make this a yearly trip, or two, as long as we stay in Pennsylvania.

We will try hard to prepare our house to accommodate a real, normal size Christmas tree this year so we can go back and pick out our fir. Tree farmers! I couldn't ask for a more fitting legacy to my grandmother, the bird lover. And instead of knocking down the house and starting over, they are turning it into a livable home, which I was assured was going to be used as a primary residence for years to come. In addition to the young Joe Clark who drove the tractor pulling the wagon, we saw the Sr. Clark walking his dog around and driving his own tractor around the house and fields.

D wanted a tiny pumpkin, but T told me that this year he wanted to carve a jack o lantern. Well he picked out almost the largest pumpkin they had in the field, so I'm pretty sure he will be able to carve a face on two sides. He could hardly carry it onto the tractor wagon, and when we got back off at the main area, we needed a wagon to take it up to the scales.

The kids all had a great time, and DD and I got to indulge in a deep espisode of nostalgia as we are both previous residents of the farm at differing periods of time, as well as life long fans. I had a hard time leaving, but I really really enjoyed myself. How many people get such a gift?

END

Sadly, I have heard from my cousins that the remaining acreage around the farm was sold to mushroom farmers. Technically this meets the encumberances on the land as pertains to agricultural use, but anyone who is familiar with mushroom farming knows what challenges that may bring to continuing the pumpkin and christmas tree business. The odor of mushroom fertilizer is potent like no other smell I can think of; an extremely gaseous methane kind of scent that gives people headaches and offends worse than skunk. I'm not sure if the laying of mushroom fertilizer coicides with the harvest of pumpkins and fir trees, but if so, I have a feeling business will decline for the latter. As my cousin said "I wish they had sold the land to real estate developers instead."

socializing online when you can't leave the house

I suppose one of the reasons I started this blog was to reach out to others like me in similar situations, a universal desire, I'm certain. We all feel better in the company of others who can relate to whatever we've going through.

Ever since my mini stroke last year, I have made a concerted effort to get out of the house more, even though I feel less like doing it than ever before. But I was so determined to force my kids to socialize more even though the two oldest pushed against it. The truth is they need it, and they benefit from it, despite disabilities that make them fight having human contact, especially NEW human contact. The little one loves to get out and play with others, although he often wants to keep doing whatever he's doing in the moment, so he has also joined the protest movement against leaving the house. Once he's out though, he's usually happy about it.

Anyway, that is all about the kids. My dh hates leaving the house almost more than them. A grown aspie is harder to get into motion that the children, who at the very least will eventually capitulate rather than suffer my wrath. But the dh is practiced in the art of passive aggression; he will often say yes, and then sabotage our ability to actually do something with his behavior. But he needs socialization too, and occasionally I overcome inertia for the both of us, and out we go. Sporadic outings do not build long term relationships however, so he doesn't really have any friends in this fine city/state/region of the country. But everyone who knows him likes him, and my relatives are all very nice to him on the rare occasion that they see him. It's still not enough, but it's better than nothing. What I really want is for us to once and for all pick a church, and build a relationship with it as a family. Heck, I would even settle for all five of us choosing a different church each and rotating. You can still build relationships that way.

But I need something more for myself. My best friend is over an hours drive away, I'm lucky if I get to see her three times a year. We are both consumed with family drama that makes it difficult. Most of the rest of our good friends are in Los Angeles. The disability level in our household has really escalated since we've been here near Philly, which has made building new relationships very difficult. I try to keep in touch with some of our friends and family online, but it's been a struggle. But at least I have that option in this day and age. I've made some new friends online, and even met some of them in person.

We found a new church through web surfing a few years ago, and I was excited when I found out that there was an online community active in the church in addition to their relatively local physical building. As it turned out, other members of my family had a history with this church that I was completely unaware of, but it made me feel that my prayers to find the right church for us had been answered. I knew that it was likely that dd would have a hard time with any regular church attendance, and though some of the people there were absolutely outstanding as far as fellowship opportunities were concerned, sure enough, she eventually pulled back. Our attendance since 2005 has mostly consisted of participating in their yearly halloween alternative celebration, but I still like the congregation as a whole. I figured we could always participate in their online forums as well, but alas, the webmasters apparently have new responsibilities that have put maintaining the website a bare minumum priority.

Well I was pleasantly surprised this year to find out that several of my favorite people from the church have started blogs which have become my favorite new nightly reading time. I really enjoy this fellowship, though I'd love more of the in person variety. But I find as much entertainment value in blogs as I do with novels. Don't get me wrong, I still read voraciously from the local libraries, but now the spare hour or two I get to myself after everyone else is in bed is often devoted to blog reading. I also have found great comfort in several blogs of autism parents and some individuals with autism.

I was reminded recently by a friend whose wife has a rather high degree of physical disability that one needs to be creative with social pursuits and hobbies in those situations. They are both addicted to Warcraft, which is an online role playing game that is very popular though it bores me to tears. But his principle is correct; social outlets are so important that you take them however you can, and we are lucky to have such opportunities in our present circumstances.

Last year I began a love affair with myspace that started as a chance to share a bit of our lives here with family and friends far away, and expanded into something so much more. My enthusiasm waned a bit as site content is not monitored nearly as much as I would like when it comes to a program that I encourage my children to use; there is way too much almost-porn on the site for my comfort, but I still get a lot out of it, and I will quote one of my blog entries from myspace from last year:

START
MYSPACE IS FUN. And you get to hang with your peeps when it's convenient for you. Like in the middle of the night when a toddler wakes you, or insomnia gets you, or the freaking dog won't stop barking, or when you have ten hours of work to do while the kids are sleeping and out of your hair. Myspace helps those make those moments much more bearable. So I will still be here on myspace, representing myself a little more personally now, and sharing my minute details when I feel like it.

I've been searching for some friends and family on myspace to see if I can find some people that I miss being out of touch with ... myspace does make it a lot easier to hang out with people online, which is great when you are all the way across the country from most of them. I have to credit my sister in law Hazel for convincing me to give it a thorough test drive.

MOST of the people I added as friends are ones that I know very well, or at least used to. I have added a local musician that I love plus my favorite health food store and a couple people connected to that, but, for the most part, my friends have a very personal connection to me, and I LOVE it. It's been really great finding friends from freaking elementary school, junior high, high school and college. Also some friends from the post college, pre Philadelphia work era. Some of them I found by accident while I was searching for someone else. Very very cool. I have a desire to kind of reconnect with people lately since I turned forty last year, and sort of almost but not really died. Let's just call it a too close for comfort brush by death.

I have kind of been out of the loop since my second son was born, but he's five now and I'm starting to have a little bit of time to think about something else. Mostly that time comes late at night, but all the more reason to myspace. It does seem like a verb to me.

Plus some really great friends of ours moved away last summer, and I miss them so much. I've convinced at least one of them to give it a try. Honestly, myspace is a good chance to build better relationships with ones not only far away who are near and dear or even just on the edge, but also with people right in front of my face or close to it. Lets face it, with my husband's long work hours/ horrendous commute, three kids I'm home schooling, and a couple family members with agoraphobia, plus a definite diabetes fatigue, I just don't get out much. And that isn't likely to change anytime soon. We haven't been to church in over a year. I've been out of the visiting circuit for so long that people far away are coming to see US.

Two years ago, my precious grandmother E died, and her funeral was almost an impromtu family reunion. My maternal grandfather's family has had an annual reunion for ages up near Allentown that came to a halt a few years back when the organizers at that time wisely gave over to their retirement years. My grandmother's funeral was a fortunate event in that it gave some of my cousins who had been knocking around the idea of starting up the reunion again the final motivation they needed to push forward.

In June 2005, the E family reunion was reborn thanks to my cousins K and B who spearheaded the event, and so many other relatives that were eager to contribute to the glorious occasion. We were all so happy to see each other, and it really punctuated for me how much less socializing I have done with my family since moving near to so many of them. Total irony.

The saddest part is that DH and I have sacrificed being near our immediate families to live out here and raise the kids in what we consider to be a friendlier family environment, close to much extended family, and yet we don't make the effort to see them. My mother comes to see US. Almost every week in fact. And while that's great, sadly, that is five other of our children's grandparents in L.A. that they rarely see, who I haven't seen myself in over three years. If I'm 40, they certainly aren't getting younger either. My next big push is to convince the grandparents to open myspace accounts. But I'm loving finding other relatives here now.

This also coincides with what would be my 25th high school reunion next year, if someone from my high school bothers to get one together. I didn't go to the 5th, 10th or 20th, and I have a feeling I may have to wait until 30 comes around. 2008 will also be the 25th year since I matriculated as a freshman at UCLA, and though I met many great people through the 7 years it took me to get a 4 year degree (finally graduating ELSEWHERE), the ones I think about most are four great girls I met (three were dorm mates) that year and didn't keep in touch with past 1990, though I bumped into one at Costco in 1996. Nostalgic? I think so. So far I've found 2 of them here.

Reconnecting with people on myspace in all the categories above has been so awesome, many of them don't have direct accounts, but their kids do! Even if some of the content on the kids' pages just grosses me out. And there are a lot of skanky people on myspace. Lord knows my privacy settings are all very high, and they need to be. But the younger generation has rekindled my hope for building on our relationships and reconnecting with their parents. Hopefully, together, we will get them all hooked I know I'm hooked.
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I'm still going strong with myspace, I have over a thousand pix loaded there. I've been using email for what seems like an eternity, though I guess it's only been fifteen years plus a little. I was trying to remember the first internet service I had to no avail. I'm also on goodreads since last December. And now I'm starting blogger instead of just reading other users all the time. So I guess I'm embracing the online social movement, even though compared with the average age I'm a dinosaur. Truly, I don't know how I'd live without it now.

God is good and god is great, and so I thank him for the internet.