I realize not everyone celebrates Thanksgiving around the world. However, I would be remiss if I didn’t do my annual “Thank you” post.

1. I am thankful for my family. My husband and kids are a large part of my life. If not for them, I don’t know where I’d be today, but I’m sure it would be dark and nasty.
2. I am thankful for my job. I love being able to help people and inform people from behind my little laptop. I’m happy that I’m able to work for such an awesome organization. I’m happy that I am useful to someone other than my family. The feeling is amazing considering how long it’s taken me to find my career.
3. I am thankful that we have a home and cars and most of our worldly possessions. I know I complain about this apartment sometimes, but it beats most of the alternatives.
4. I am thankful that  you all let me into your lives whenever I decide to post. I know I don’t have nearly the time I used to have, but you are all always here to give me a boost and say a kind word. So I am thankful that you are all such wonderful people.

Recent discussions have been going on at The Thinking Person’s Guide to Autism. I love the people over at TPGA and was happy to read along all week. The fact that I knew people involved in both the posts and discussion probably didn’t hurt a whole lot either.

The discussion started over something Robert posted on his blog, then Zoe responded on her blog. To me, it doesn’t really matter how the whole thing started as I think open dialog between the parent Autism community and the Autistic community is a good idea, especially since I reside in both camps.

However, when I finally found Rob’s twitter account I was surprised to see, we live in the same town! Many of you may have not noticed, but I don’t regularly publicize where I live. Most of you know I’m in Texas, most should know I’m in the Dallas-Ft. Worth Metroplex. But with a landmass the size of Connecticut and a population size more so, that means I could live in quite a few places.

Some jokes were made about the situation I was presented like the insistence that we’d run into each other at the supermarket. I was just trying to prove them wrong by showing how Rob and I don’t live near each other. At just over a quarter of a million people, that should be quite easy, no? I found out I was wrong.

Not only did we live near each other, we live exceedingly close to each other. So close that it’s possible (actually highly highly probable) that we ha already run into each other and just didn’t know who the other person was! If our kids were slightly closer in age, they would even be at the same school.

This has already unfolded on both my link above and on ThAutcast which is why I have little qualms stating it here at this point.

All of the above along with my own feelings of guilt that I knew where he lived but he didn’t know where I live lead me to send him the email that’s mentioned in the above two links. But it’s lead to me wondering…

How much information is too much information? I now regret the fact that I told him. I also regret looking him up. As soon as I learned where he lived, the discussion going on online ceased to be among anonymous people. Would I change anything I’ve said? No way. I own my words. I can get embarrassed or regretful, but what I have said and done is what I believed to be the right course of action at the time.

Was this an invasion of Rob’s privacy and that of his families? I don’t know, but I do know it was not seen as appropriate to him or even most of my closest Autistic friends. And what do I do now that everything has blown up?

I don’t particularly know what to do.. I’m afraid to go to the store out of fear of running into Rob and his family. This is part of my own disability. I have leanings to be agoraphobic, period, so having something like this happen in my own backyard so to speak makes me even more so. I don’t expect him to do anything rash, nor myself. But there is already tension and I hate tension and tension leads to anxiety attacks.. So if I see Rob (or more appropriately when I see him), will I have an anxiety attack in front of him? I certainly hope not, but it will probably happen, or I’ll do my best to avoid him.

Seeing as my husband knows everything going on, he will most likely try to be supportive of me no matter what happens. So hopefully he’ll be at my side when I do eventually see Rob, unless we decide to meet each other and it not happen by random chance. I’m really afraid of that random chance though.

So this is what happens when you have access to too much information and give out too much information. Hopefully things will fall in place together, but for now, I sit and read and try my best to stay inside because my fear is too great.

My deepest apologies for the lack of updates. A lot of what I’ve wanted to talk about is part of my Autreat presentation (separate links for those looking at the pages). As I’m unsure who is reading my blog and going to Autreat, I didn’t want to ruin the presentation by presenting all the information here. And believe me, there is a LOT of HORRIBLE details that I’ve researched while coming up with my presentation material. (I will post a copy of my outline and resource page once Autreat is over.) So I greatly apologize for my lack of posts.

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Last month, while meeting with some other Autistics, the subject was brought up that it would be nice to have a Neurodiversity Parent Organization. I’ve entertained the thought in the past, prior to my employment with ASAN and prior to starting ASAN-DFW. Since then, and becoming active at the boys’ school, and become more active in general, the thought was pushed to the side. I know I’ve spoken to some within ASAN about the need to reach out to allied parents, but we are spread so thin right now that it’s just not feasible.

Yet, being semi-active on Twitter, Facebook and now Google+, I’ve noticed more and more what I would consider Neurodiversity centered non-Autistics. People like Stuart Duncan, the ladies and gentlemen at The Thinking Person’s Guide to Autism (Shannon Des Roches Rosa, Liz Ditz), and others like Steve Silberman (well known for his Wired article). Some of these ladies and gentlemen are parents, others professionals and so forth. The one thing these people have in common is that Autism is not a burden to them. Yes, it is difficult sometimes, all lives are difficult sometimes; some moreso than others, albeit.

So is there a need for a ND Organization for Non-Autistics? I think there is. I think as much as these people have found communities online, there needs to be some place they can gather offline. None of this chelation, diets and “woo” as some like to call it. Just a group where their kids can be who they are with no pressure. Where they can meet with no pressure. No one trying to sell cures or treatments. Just parents, professionals and whoever else to come say, “Yes. Autism can be disabling, but it can also be beautiful.” “Yes. Autism has a lot of downs, but it also has a lot of ups.”

I will be going to Autreat in just over 2 wks. A place to be myself. I was planning on taking Daniel and his iPad until travel plans got delayed and ticket prices went up. Because it is a place where he can be himself, and no one would stare or try to push him to respond quickly. I would love a place for him like that here, in his own community. And one where I wouldn’t have to keep saying, “No. I don’t believe in that.”

We are in day 2 of ice/weather days. The Super Bowl is in 5 days. And the power has gone out twice this morning.

The boys are handling school being out relatively fine. I taught them how to play Uno, Go Fish and Blokus yesterday. They were most excited playing Go Fish. While we played Blokus, the most amazing events occurred. Daniel lost his first tooth! I expected him to freak out when it happened, but he didn’t! On the contrary, he was ecstatic! He asked if he could take it to school to show his friends. He said the tooth fairy was going too come and give him a prize. He was even able to get across that a new tooth was coming in its place.

Unable to understand it though, Stephen freaked out because he hasn’t lost his teeth yet. A year younger, he has already seen many of his classmates lose their teeth. He has wanted to lose a tooth for two years now. I couldn’t even come up with a way to console him. “Just wait…” doesn’t cut it in Stephen’s world. Any ideas are welcome as I know Daniel will lose another tooth before Stephen does one.

This morning though has been a flop. Power went out once before the boys woke up. No school again. And I decided to sleep in and just let them play the PS3. Just a few minutes ago the power went out again. Needless to say, they both freaked! Stephen quickly recovered, but not Daniel. His game had turned off wich destroyed his world. Then he tried to turn on a light to prove to us the power want out. It didn’t come on. His iPad wasn’t charged which made everything else fall apart more. He said he wanted to go watch tv but I had to destroy that hope.

He stayed so convinced that even when the power did come back on, he refuse to believe it. He finally calmed down, but nothing I could do consoled him. Twice now, in two days, I’ve been unable to console my kids.

Now, I realize this is the first time they’ve experienced a power outage since they were toddlers, so that had a lot to do with that. And I realize it was the first lost tooth. But it is horrible to see them both upset and not even be able to help them. I rubbed their back and said it was going to be okay, but in the end, none of it helped and they calmed themselves down. Is that a testament to my parenting skills, or a sign they are growing up? I don’t know, but I don’t like it either way.

This year has been quite a ride for Ari Ne’eman. He was nominated late last year to sit on the National Council on Disabilities. His nomination was placed on hold anonymously just before the vote to confirm all the other nominees. He was later appointed to the IACC. Somehow through all of this he earned his Bachelor’s degree.

Now the news today, the anonymous hold on his nomination was removed and unanimously the Senate confirmed him to the National Council on Disabilities. (Read Disability Scoop for full details.) Having worked with Ari and the rest of the Autistic Self Advocacy Network this year to set up the Dallas Chapter of ASAN, not to mention on other projects. I’m very happy to say Congratulations Ari! No one deserves a seat more than you. Even higher congratulations are in order as well, not only was he confirmed, but he is the youngest to ever be confirmed to the Council at the ripe ‘old’ age of 22 and the first Autistic as well!

After a day to digest the movie, I’ve decided to write a review of it. This is my point of view of the movie. It also has a great deal of spoilers in it. I would recommend only reading if you have seen it or you don’t mind spoilers.

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The opening of the movie automatically grabbed me as someone who lost her father only two years ago. From there, the movie degraded into stereotypes of Asperger’s that I cannot see happening to any one person. Adam was an electrical engineer who worked for a company that made toys. While he was excellent at what he did, he took things a little too far, and ended up during the course of the movie being fired. IE, he was creating toys that were not within the price range of the company, and therefore was not making the company money. He ate the same food each day for breakfast, lunch and supper.

He had one friend who was more his caretaker and was a long time friend of his father’s. He spent lunches with Adam, and helped him settling the estate, and was generally a compass. Adam, after his father passed, went from having everything stocked and organized to having no food in the pantry and fridge and needing to do laundry because he had nothing to wear. Doing laundry is where he met Beth, his neighbor.

From there, they went further into stereotyping by showing that an Aspie would not help someone struggling. (Which the NTs in the audience laughed at, while I found it degrading.) They then showed how he degraded into a ball of nerves when things did not happen as he had expected. (I know what that feels like and cried my eyes out.) The next few scenes were a mix of very simple, almost child-like approaches to attraction and affection. Then was his announcement about being an Aspie, and how he perceives things differently than NTs. (He actually used the term NTs, neurotypicals in the movie. I rather hope I don’t sound like he did when he used the words. I had never seen it being so ambiguous as the actor portrayed it.)

Then it went to her studying about AS, and another few cute, child-like, innocent scenes. Him not understanding what she meant when she said she didn’t feel like company. Taking her out to a closed Central Park. Showing her raccoons and stating the line “They don’t really belong here, but here they are.” (This is significant for the last of the movie.) They seemed to me more typical of a relationship between two middle schoolers, or high schoolers, than that of a relationship between two late-20′s, early 30′s.

I immediately disliked Beth’s dad and ended up correct in my feelings toward him. (I wonder how much of this was evident to the NT viewers. Or if they just saw Adam as uncaring for his approach towards her father.) I disliked, but still appreciated, Beth pushing Adam out of his comfort zone. While I think she did the right things once she got him there, I think she could have been a little more sensitive. But these are issues I had with the character which was really nicely portrayed. I know that I’ve had the same thing happen to me so guess I relived those moments.

Then Adam became even more stereotypical. He showed an outburst of anger, which were not characteristic of him.. Showed him in a very awkward repeating the poses by Beth.. Which at first I didn’t understand that she was upset.. Then she started crying and visibly crying and rather than comfort her, he just went on repeating her. It was awkward and seemed very unrealistic of other moments in the movie where he showed his own feelings and showed that he understood her feelings. While they did show his perservations, I find it hard to believe that by the time someone is 29 with Asperger’s, they wouldn’t have figured out how to dumb it down. Perhaps that’s me putting myself into the character too much, but somewhere along the line, I figured out that most people are not as intelligent as I am.. And he would have had to live an EXTREMELY sheltered life, even in college, to have not noticed that there are just some people that will never “get it.”

In the end, when he and Beth are getting ready to move to California, and she asks him, “Why?” He wouldn’t have said what he did.. He would have either been unable to answer, not because of lack of understanding the question, but being unable to quantify it.. Or he would have just said the line “You are a part of me…” and reiterated the “I love you.” Or he would have just said the line, “Because you can help me find a place to live, and how to get around and get to work.”.. He wouldn’t have been unable to quantify it, said the expressions of love AND given the logical answer.. I don’t know any one person that would have come up with all three of those responses within that time matter.

Also, I think that the last part was inaccurate. He figured out how to get to her parent’s house in the suburbs. Went through all the process to get there. He understood that he needed to tell her he does love her.. I also think it was quite clear that both of them did share moments where they knew what each other was thinking. There is just no logical reason that he needed to go from “I love you..” “You are a part of me..” to “I need help with daily living skills.”

I did appreciate that they showed him deciding not to go to CA, then reversing that decision because of his love of Astronomy. Then it degraded again into him not understanding what his friend was saying with the “I’m trying to thank you.” Though, I had no clue what he was talking about at first as well.. But then when he said that she was as stubborn as he was, it clicked. But still, there’s no reason that Adam couldn’t have just said “You’re welcome.”

Then showing how in just a years time he went from being totally socially inept, to understanding by himself, that he was droning on. It didn’t seem accurate. Like, that one moment of deciding he had to leave for his life… changed how he perceived the world? Or that the last month with Beth showed him appropriate life skills? I didn’t get it..

The ending would have been fine with me if not for the audience. I felt that the ending was bittersweet, and identified the character as having a bittersweet feeling. Where as the rest of the audience left laughing. I was crying my eyes out and everyone around me was laughing. It didn’t seem right to me that just because he smiled they felt he felt good about what had happened. I thought it was more what we are told are “inappropriate” responses to our inner feelings. He had the same smile at the first of the movie after his father’s funeral was over.. The same smile when he was given his severance check… There is no reason to think that that smile meant happiness.

Okay.. Sorry to end it angry. But that was my feelings on the film. They created an inaccurate AS man, IMO. They created someone that cannot possibly exist. While all these things can happen from person to person with AS, there is just no way that one person would possess ALL of the characteristics.

I was going to do a rant, but got interrupted. Luckily, it gave me some time for reflection and I’ve decided to turn away from being a rant. This is a response to Sarah’s New York Times blog reply, Kristina Chew’s Change.org blog, and Sarah’s blog reply to comments made. I feel it’s quite pivotal to read the three of these with comments before reading my reply. Though, I’ve been known to be wrong. Hopefully, it will make sense even if the posts aren’t read.

I think there are distinct differences to the way the many NT parents parent their ASD child(ren). This is not to say ASD parents are perfect. Hardly so.. but I think our own lives and what most consider “success” means we understand how difficult it can be for our kids.

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I’m going to go a little into my backstory as I think it’s pertenant. I grew up in a dysfunctional household. My mother, whom I believe to be AS-like if not AS, was the primary caretaker to myself, my sister (NT) and my brother (undiagnosed Autistic). She was married to my father who was an alcoholic. (I say was because my father passed two years ago, not because they got a divorce.) With my Asperger’s and my father, my anxiety went through the roof at a young age. I do not remember the better part of my childhood as a consequence. (The history for my diagnosis was based on information from my mother and what little I remember.)

I scheduled every part of my life as well as my brother’s. I stayed busy because I enjoyed it. I didn’t notice a lot of my quirks (though, now I recognize just how different I was) because I didn’t have enough time to stop and think about it. My mom also kept me going. I wasn’t allowed to have a job during my high school years (allowed by either my mom or dad) because it would take away from my school. I didn’t get my first job until I was just over 18. I worked at Subway for 3 weeks with the last week being filled by complete physical agony because the stress became too much. I then switched to a much nicer job of tutoring math to people who could easily be my parents by their age. It was quite lovely to be honest.

Then I moved to go to college. And that’s when I fell apart. I didn’t have every second scheduled so I started realizing just how alone and lonely I was. I didn’t quite fit in with most people. I wandered the school grounds for the first couple of months barely knowing anyone. I got lucky to find a group of friends who were sort of like me, some of whom I still have the pleasure to call my friends. (Okay. I lied.. I didn’t find them, they found me.) But still, I couldn’t handle the stress. Not of classes, classes were great. I loved what I was learning. But I couldn’t handle testing. I couldn’t handle paying bills correctly, or managing money. I was majoring in Physics, had a firm understanding of math, but for some reason just never could get myself together enough to do what I needed to. I tried for nearly 2 years to make it work. I did not succeed. I stopped when I got pregnant with my oldest. Not because I got pregnant, but because I finally conceded loss.

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I can see what happened to myself. I know how I could have done things differently and possibly been “more successful” so to speak. (I do plan on finishing a degree. And next time, I will be getting the help I need.) But it also makes me realize what I can do to help my kids. I have enough foresight to see how certain things can set them up for failure.

As parents, we all change how we do things for our children. I don’t care what type of parent you are, or how your child’s brain is wired. We all want to see our kids succeed and be happy. But understanding the difficulties ahead, I feel ASD parents are a little more equipped to help  their ASD children.

Just a few examples:

My insistance to keep myself busy all the time set me up for failure. I couldn’t handle it when I had spare time. Life is filled with spare time. It took me several years to figure out what to do with spare time. This seems to be a problem for most ASDs, or so I’m told. “They” tell you to make sure there is little to no down time during your ASD child’s day. I disagree with “them.” I don’t think you need to schedule it in, but I think you should equip your child with ways to cope.

People are known to give their children down to the minute schedules. Daily schedules and present it at the beginning of the day. I tried those for myself. You know what I found? I couldn’t handle anything going wrong. It stressed me out as I didn’t know what to do with my previous plans. I say don’t make those schedules. That is not to say not to have your day totally unstructured, but leave yourself some leeway. But have an order to things. B will happen sometime between A and C. B does not have to happen immediately after A or just before C. Example: We take my husband to work in the morning. Sometimes we take him to actual work, other days we take him to the train station. It happens every day, but not necessarily the same time every morning. After that, we eat breakfast. Now we may eat breakfast as we’re taking him to work, or we’ll eat it on the way home, or sometimes once we get home. It’s still structured, they still know what to expect, but it doesn’t have to happen a set way every day. I also use the same idea with routes travelled. I change which way to get to the same place. This way, if there’s an accident and we can’t use that direction, it doesn’t disrupt the kids whole day.

It’s simple things. So far, my children are progressing wonderfully. I even got a spontaneous, non-prompted sharing of one’s day today. He made an ocean with seashells. It was a beautiful moment especially considering 2 years ago he could barely say 5 words. They are both happy. Yes, they do have their meltdowns. Yes, sometimes they are difficult as all children are. (Have you tried watching an NT child? ACK!) But if we can just step inside their shoes, we can hopefully understand what is provoking that response. Then we can help them. And we also are rewarded by having a happy child which means our own stress is relieved.

This was the person I had no preconceived notions about. I had no idea who he was let alone what he would have to offer. Imagine my surprise when I was blown away by his presentation. He spoke on social skills and many of his ideas were really good. If there were someway to translate them to adult life, they’d be even better.

A lot of his focus wasn’t on what the child was doing, but the way the adults approached it. Then after the approach, they spoke on how to help the child. When then child had learned everything, how they taught their peers. It was very nice. He also used examples of how the Asperger’s or Autistic child felt without making light of the situation.

Overall, I came away feeling very good. So good, I actually waited in line to speak with him. (I will speak on the line experience probably tomorrow after I get the full affect of the conference.) I thanked him for his gentleness in approaching the subject of how the Aspie student felt. So overall, very very happy.

I have so many things I’m wanting to touch on. I think tonight after the boys are in bed I’m just going to have to start making posts. I will wait to publish until consecutive days. I would like some input as to what those of you who are reading would like to hear about.

In the upcoming days, I’m going to be discussing Self-Advocacy on a Global Level, Issues with Cassandra Affection Deprivation Disorder, ABA to the Autistic Family, and Reinvention of the Family.

Please give me anything you would like to read about.

From here

To put the story simply, last year, one poor little boy endured the unimaginable. His kindergarten teacher put up for vote who in his class wanted to kick him out. They suspended the teacher. The ruling came down today that she will keep her tenure, her job and her contract.

This scares me, for kids like myself, for my kids, for the whole of the Disability community. We are not being heard. It would be one thing if we weren’t speaking up, but that’s not it at all. We are being ignored.

This is a stark reminder for me. We need to push the envelope to make ourselves understood. Otherwise, this will keep happening. We will keep being ostrisized. What’s worse is our kids will be as well.

And a brief warning, don’t read the comments following if you don’t have a strong stomach. There are some very cruel and heartless comments from so-called adults. It shows just how far we have to go to be accepted.