Elated, Annoyed, and Disheartened

So it's been pretty hectic around here since school started at the end of August.  I started a new job, working for a non-profit assisted living facility for adults with developmental disabilities.  It's been a learning experience, that's for sure, but I am enjoying myself a great deal.  Even with the fairly consistent overtime, I don't have near the same level of stress that I had been experiencing for the first part of this year.  It's good to be serving people and making a difference.

Aleric is making massive progress this year!  His vocabulary continues to grow, he is engaging more and more in short conversation (2-3 exchanges) before going off to do his thing.  He has stopped fighting us on doing his homework; in fact, this week has been the best week yet for homework!  He usually has to write a certain letter each week, and this week was "I."  He also had to fill in the missing capital and lowercase letters in the alphabet.  Typically, we have to fight with him to get him to write his letters at all, and doing anything in alphabetical order has been a nightmare.  This week, he was excited, and kept telling me "the letter I."  We got through one line of lowercase Is and started the second line when he turned to the alphabet page.  Since he wanted to do that part, we started going through the alphabet, with him giving me the next letter in line and writing the capital version.  The phone rang, so I had to answer it, and while I was talking, Olivia stepped in to help him out!  Totally unasked for! :D   She was giving him the sound of the letter, and he would say the name and write it.  They finished all of the capital letters together.  When they finished that, I told him he had done enough homework for the day, so he was done.  He looked at me, then at her, and said "Olivia, you help me?!" and they started the lowercase letters.  It was so freaking amazing!!  They only got a few of the lowercase letters done before she got frustrated with him and asked me if she could just do it for him.  Figured it was time to stop for the night.  The next night, he got his homework out and finished all of the lowercase letters AND 6 lines of I writing, without any prompting at all!  I even tried to get him to take a break, worrying he'd be overstimulated, but he was just fine.  He did it all without any help, too.  I'm so proud of him.

I sent in a request before school started to have them evaluate Olivia.  They agreed to do observations for a month to get a feel for her and see where we needed to go from there.  We were also referred to a pediatric neurologist because she was eating plastic and rubber; we were concerned about pica issues.  I spoke to her teacher a few times informally, and she said she had some tendencies of autism (her teacher used to teach PPCD, so she's very familiar with autism), but didn't seem to have too many issues right now.  The speech teacher, as well, said she noticed some quirky things about her. 

When we went to see the neurologist, she observed Olivia for an hour and a half while talking to me and Ian, and determined that there was sufficient cause for concern on a possible autism diagnosis, if not an anxiety disorder of some kind.  She noticed Olivia was very fidgety and anxious.  She wanted to see what the school said about testing before deciding what to do from there.  We met with the school the next week, and all of a sudden, there were absolutely no concerns about Olivia, she was a perfectly normal 1st grader, and testing was being denied.  One of their examples of her "normal behavior" was in P.E. when they were playing an alphabet game.  While the rest of the kids (three classes of 1st graders) were running around the gym in chaos, my daughter had taken control of her group and delegated which letter was next, who was going to get it, where it went, etc etc.  While that's wonderful and I'm excited she was able to do that, THAT IS NOT NORMAL 1ST GRADE BEHAVIOR!!  What the hell?!?  I went back to the neurologist, who referred us to a child psychologist for further testing.

Now, to back up a bit, when we met with the neurologist, I got the whole "you don't look like you have Asperger's" speech.  I had to spend almost as much time trying to explain to her how and why I got diagnosed as I did explaining my concerns about Olivia.  I ended up taking her a copy of my diagnosis report to end the discussion.  I went to do the parent interview with the psychologist this week; the exact same thing happened!  She didn't want to talk about Olivia, she wanted to talk about me!  It was like being back in Dr Hoke's office, trying to convince him to just do the testing because I already knew that was the issue.  She even told me when I came back with Olivia in JANUARY (?!?!?) for testing, she wanted me to bring her a list of examples of what made me think I have Asperger's, because she just didn't buy it.  She also wanted to see the diagnosis report from Dr. Hoke.  Can do.

I'm tired of having to justify myself and explain to other people how I experience life, and have them doubt and question me the whole time.  I may not be classic Asperger's, but I do have a diagnosis, and it is RIGHT.  In fact, since I've received my diagnosis, such a huge weight has been lifted off my shoulders.  I'm not nearly as anxious as I used to be because I know WHY I react to things like I do.  I have a better understanding of myself, and I'm not constantly trying to pretend I'm someone else so I "fit in," even though I never do.  I have a job where my bosses completely understand the variables of autism, and when I say there's a limit to what I can handle in certain situations (like being unable to handle the social stress and lack of downtime in an 8-4 shift, which is why I won't work them), there's no arguing or questioning about it.  They get it, and they work with me.  I know I don't present typically, but most females, as I understand it, don't.  We get written off with social anxiety, ADD or OCD.  This psychologist even suggested that I really don't have Asperger's, I have ADD and a little OCD, even though I told her we did the Brown testing for ADD and OCD, and they came back negative. 

It's incredibly frustrating and painful to have to constantly defend yourself from people who look at you with preconceived beliefs about your "perceived" issues and think they know better than you do how your mind works and how you feel.  I already went through all of this crap with Dr Hoke, just trying to get diagnosed.  He did the same thing, and I had to argue with him to do the tests.  They came back as a surprise to him, but not to me.  I knew I was right as soon as I started looking at Asperger's.  I'll bring her the report, but that's going to be the end of the discussion about me with her.  I'm worried about Olivia; my focus is on making sure we are aware of any issues that may be there. She was also very critical of the school diagnosis process, and I wonder if I bring Ricky to her, if she'll question his diagnosis and insist on doing testing all over again on her own.  She can do it at her own expense.  I have his scores and everything, and that's good enough for me.

Took a Break, So Much to Catch Up

Wow, just logged back in and realized I hadn't posted anything in over a month!  Whoops!  There's definitely been plenty to rant about, I was just being lazy.

Basically, the biggest thing to have happened in the last few weeks is that I learned the school district had failed to correct Ricky's background history section of the evaluation reports.  Now, when we had his ARD and I first saw the error (it included my name and Ricky's, but the history itself was for another child!), I pointed it out immediately in the meeting.  The psychologist who did the evaluation apologized and said that they use a database program for all of these forms.  She said she must have finished one child, gone in and replaced names, saved it, gone to do something else, and came back to see the names changed and assumed she'd already updated it.  Pretty unprofessional, if you ask me, but hey, we're all human, and we all make mistakes.  She said she'd fix it and I'd get a revised a copy.  This was back in January.

Well, when we had his placement ARD in May to move him to the other school, I was told I'd get a copy of his final IEP, etc for next year.  So I've been waiting for it.  School's out for the summer, so I didn't figure I could get ahold of anyone there, so I just kinda let it slide.  Well, when I went to the Parent Leadership Training in Houston a few weeks ago (which was AMAZING!!), I found out about an autism conference in Corpus Christi that is supposed to be absolutely massive!  Since I was also told at the initial ARD that the district would send me to one conference anywhere in the state once a year, I decided I wanted to go to that one.  This is where things get ugly.

I emailed one of the specialists at central office to ask how I needed to go about getting up the registration for this conference.  She said she had never heard of a parent making a request like that before, so she told me to email the special education director.  I figured maybe parents just never actually asked for it (so many special needs parents are just not involved!?!?), so she may actually NOT be aware of it.

I got a very defensive response from the director that they do not have a "policy"  that "obligates" them to do any such thing.  She said I misunderstood what I was told, blah blah blah.  Made me angry, but hey, I didn't have it in writing (which I now know better), so I couldn't do anything about it.  No conference in October for me. :(

Since I was already talking to her, I told her that I hadn't received Ricky's IEP stuff and asked if I could get a copy.  I went by the office to pick it up, and sure enough, NONE of the errors had been corrected!

I've had to go through a mess of meetings to go over what was wrong (everything) and provide details of his history again.  I even had the ECI office print me out of copies of both Olivia's and Ricky's full histories, just to be safe.  Since the psychologist who did his testing is no longer with the district, they have to fax it off to her, have her sign it, fax it back, and then I'm supposed to get a copy in the mail.  I'm waiting to receive it now.  Most frustrating.

On the positive side, Ricky continues to develop his speech.  We're getting more conversations with him, even though they're very short.  He has developed a stronger joint attention -- he's making it a point to come get us and show us something he's doing.  We were around a friend's granddaughter a few weeks ago, and Ricky made it a point to go get everyone who wasn't in the room and bring them in to see the baby.  He just loved her!  He said he doesn't want to go to back to school, and he's fighting me on writing.  We're not making any progress there.  School starts in a few weeks, and we're not where I wanted him to be by now.  Grrr.....

Olivia has now been referred for autism evaluation.  She has taken up eating non-food items (rubber bands, hair bands, her Squinkies, plastic).  She seems driven to do so; when we catch her, she gets upset and apologizes, but says "something" is making her eat it.  She locked herself in the bathroom Monday night and was eating again.  I took her to the doctor yesterday, and he is referring her to a new doctor in his medical group who is a pediatric neurologist.  He said she specializes in autistic behaviors and is very good.  He's sending a referral for both of the kids, so they will have a doctor.  I'm waiting for a call on when those appointments are going to be.  It looks more and more likely that Olivia is going to be autistic as well. 

My friend Christine is having another baby, her third.  When I told Mom about it and said that Ian was taking extra precautions to make sure WE didn't have another, she told me I didn't need to have another baby.  We had enough problems as it is, and it wouldn't be fair to risk having another with autism as well.  Ouch.  Thanks, that was helpful.

Ah, happy day!

Yesterday, June 25th, was my little man's 5th birthday. :)  We had a great day playing Transformers, going swimming, eating pizza and cookie cake.  Family friend Christine and her girls came swimming with us for his party, and even she commented on how much more he's talking.  We were getting 5-6 word sentences, he was telling people to stop talking and finish eating, "I want," "Give me...," and at one point even yelled "Hey, guys, check it out!  Come here, look!" when he wanted to show us a rock that was stuck in the sole of his shoe.  Holy moo cow!  We are making so much progress it's just unbelievable.  I can't wait to see how much progress he makes over the summer, and when school starts, I just know he's going to be moving by leaps and bounds.  Prayers are being answered; I don't ask that he be "cured," but I ask that we have the opportunities and resources needed to get him the help he needs to reach his full potential.  He's already grown so much!  Thanking God and continuing to ask for His blessings in our lives!

Where Next?

So, the kids are out of school for the summer next week.  Award ceremonies and end-of-the-year parties this week and next.  Then we're on our own until school starts next year. 

So far so good; Ricky has been officially transferred to the other school, but I'm still waiting to find out whether or not Olivia has been.  I can't even get her current school to confirm that they sent the transfer request over to the new campus.  I'll throw a fit if they don't transfer her.

We'll meet with the Burkhart Center in a few weeks to do follow up for Ricky's behavioral observations.  Should get some advice on strategies to try there.

Went to a PEN Project meeting last night and learned some stuff I wasn't aware of, so that's always good.  I hate going to meetings/trainings where nothing new is discussed.  I'm going to the Parent Leadership Training in June to be certified, and I was told last night that the is the first step to getting a foot in the door for employment.  Might prove interesting...

So for now, we're enjoying the rest of the year and preparing for the summer.  I'm trying to come up with some ideas that will help keep both kids busy, entertained, and on track for next year.  No regressing in this house! 

Museums, parks, camping, swimming, VBS.  What else is there to do?

Advice from the Best!

I hate that I missed out on this opportunity!!  I didn't find out until I was waiting to pick up the kids from school that Autism Speaks was live hosting a chat with Temple Grandin this afternoon!!  I submitted a question, but I was too late in the queue to get pulled. :(  All the same, lots of questions and advice from the best of the best:




Thursday May 16, 2013

Hey Everyone! We are about to begin! 4:00

Hi, I am Temple Grandin, titled 'The Autistic Brain,' and I would like to talk to everybody 4:02

Comment From Guest   Will we be watching Ms. Grandin speaking? Or viewing comments? 4:02

It is just a text chat back and forth! 4:02

Comment From Michaela  Is it hard to deal with people who make fun of you? Was it harder when you were a kid? 4:02

When I was in high school I was bullied and teased. The only places i was not bullied and teased was the special interest activities, such as riding horses, electronics, and model rocket club. The students who are interested in these specialized things did not tease. I strongly recommend getting students on the autism spectrum involved in specialized activities such as Boy Scouts, FFA, Art, Band, Music, School Play, School newspaper where they have peers that share their special interests 4:04

For the technically inclined there is really fascinating stuff in maker community groups and hacker space. These are available in many cities where are the techies can get together and do projects, such as 3-D printers and other cool stuff 4:05

Comment From Kim  What are your thoughts regarding diet and 'leaky gut' in children with ASD? My son is on a strict GF/CF diet and I would like to know if removing this specific food group is helping. THANK YOU! 4:06

There are some children who benefit from special diets. It is subgroup for these individuals diary or wheat free diet may be helpful 4:06

Comment From Shazia  What is your opinion about ABA therapy? 4:06

When I was 2 and a half with no speech, Miss Reynolds my speech teacher did ABA on me. But in 1950 it was not called ABA and I had a nanny at age 3 who played constant turn taking games with me and my sister. Board games were used to teach turn taking and teaching turn taking is essential. 4:07

Comment From Sandra Wardwell  I would like to know if Ipad is recommened for non-verbal w/ ProloGo2Go or just type? 4:07

Some individuals have good success with ProloGo2Go.There are some individuals who can learn to type independently. A major benefit of the iPad is that when you type on the virtual keyboard, the print appears right next to the keyboard and the person is able to simultaneously watch his finger pushing a letter and the letter appearing on the screen without having to shift the position of his eyes. This is one reason why an iPad may work better than a regular laptop or computer. 4:09

Comment From Guest  Please help me with severe aggressive behaviors and medicine use. Very high IQ with aspergers and I have no help or support. 4:09

I would recommend getting my book, 'The Way I See It,' and another book from Future Horizons, 'Hope for the Violently Aggressive Child.' Both of these books have lots of information on medication. IN my booking, 'Thinking in Pictures' I describe my experiences with panic attacks and successful treatment with low dose antidepressants. 4:10

Comment From STEPS Students  Is the squeeze you made being produced for others? 4:11

Yes. They are manufactured commercially by the Therafin Corporation in Mokena, Illinois. Drawings are also available on the internet, use keyword 'squeeze machine' 4:11

Comment From Toni  do you have any memories of understanding before you developed communication? 4:12

I can remember the frustration of not being able to talk. I knew the words I wanted to say, but I could not get the words out. In my book, 'The Autistic Brain,' I show some brain scans that may demonstrate why I had problems with getting my speech out. When adults talked very fast it sounded like gibberish. My speech teacher would slow down and enunciation the hard consonant sounds so I could hear them and understand them. 4:13

Comment From Melissa  I have 3 children on the spectrum, one of the things I struggle with is I don't know if it is better to almost force them to do social things, or am I just making them miserable. 4:13

You have to stretch these kids and push them just slightly outside their comfort zone to get them to do new things and help them develop. No sudden surprises that will cause panic. My mother was always getting me to do new things. I can remember when I was afraid to go to my aunt's ranch. I was given a choice, one week or all summer, but not going was not an option. I ended up staying all summer and loving it! 4:15

Comment From Desiree  How does fluorescent lighting effecting my 6 year old on the spectrum. What kind of house lighting do you suggest? 4:15

Some individuals on the autism spectrum can see flicker from 60 cycle fluorescent lights. It makes the room look like a strobe light. I want to emphasize this happens in a subgroup of children with autism. If possible turn off the florescent lights if that is not possible put a lamp with an old fashion incandescent lamp next to the child's desk. Ask the child if he sees the print jiggle on the page when he reads. If he says yes, try different colored pastel paper such as light blue, lavender, grey, or tan or you may want to try the irlen colored lenses or experiment with pale pink lavender or tan sunglasses. My book, 'The Autistic Brain,' has lots more tips for sensory sensitivities. 4:19

Comment From Gabrielle  Is there an effective training to help caregivers or family better understand how the child with autism thinks or feels? 4:19

My book, 'The Autistic Brain,' will give you good insight into sensory problems in autism. I also have lots of videos on YouTube of my talks where I describe in more detail how people think or feel. Just go to the Youtube website and type in 'Temple Grandin Autism' 4:20

Comment From Kate  Dr. Grandin, I have two daughters on the spectrum, and I just wanted to say what an inspiration you are! My youngest has accepted and welcomed who she is because of positive examples like you. Than you so much! 4:22

Thank you very much. I hope that my movies and books will help motivate kids that are different that they can succeed! It is going to require a lot of work 4:23

Comment From Kevpin  What is the most powerful thing I/we can do to help? 4:23

Develop the things that the child is good at that he can turn into hobbies that he can do with other people and he can do in jobs as he grows up. My ability in art was encouraged when I was young and it turned into the basis for my design business. Build on strengths. There is often too much emphasis in the deficits. 4:24

Comment From Guest  Ms. Grandin, you have spoken about high functioning kids not being prepared to work. Do you have recommendations about how to prep them for self-sufficiancy? 4:24

At age 12-13 they need to start having their first jobs outside the home. They need to be set up informally with friends and neighbors and some of the things the child can do is walking dogs, buying groceries for an older person, working in a farmer's market, making power-points for local business, fixing computers... when the child is 16 the child can go into the formal economy - McDonalds, a Grocery, etc. They need to learn the disciplines of work. I had lots of work experiences starting at 13 selling dresses. This was a job my mother set up with a local seamstress, I cleaned horse stalls, I painted signs, I had internships when I was in college. By the time I had graduated from college I had done lots of work and I knew how to work. it is never too late to start! If you have a 20 year old you can start getting him out of the house and working. 4:27

I forgot on a job that you can do formally with youngsters... Many museums will take children as young as 12 as tour guides and it is an excellent place to teach social skills. You need to find a manager who is willing to coach the child when he makes mistakes such as talking too long, following people too much, or standing too close. 4:28

Comment From Nicole  What are your views on the new DSM diagnosis for autism? 4:28

I am concerned about the removal of Asperger's Syndrome and replacing that with social communication disorder. To say that social communication disorder is not autism is ridiculous because social communication problems are core deficit in autism. One good thing is the mention of the sensory problems. In my book, 'The Autistic Brain,' I have a complete discussion about the history of the DSM and DSM-5 4:29

Comment From Jennifer  Is there a specific state or two in the US that you recommended with the best services, therapies, 4:30

There is much variation between different states. I recommend contacting local support groups in your area. It is really important for parents to talk to other parents and network with local people 4:30

Comment From Irma  Please help us list tools we can use to calm the aggression for kids in school 4:31

Some aggression is caused by sensory overload. There are some children that will need to take sensory breaks to calm down. There is other kids where aggression is caused by teasing and bullying and steps need to be taken to stop that. In a nonverbal individual, if aggression appears suddenly, it may be an sudden medical problem that the child cannot tell you about. The most common hidden painful medical problems are acid reflux, heartburn, tooth infections, yeast infections, UTIs, etc. You have to rule out these problems when you have a behavior problem in a nonverbal individual. Also, nonverbal individuals are smart and if you make them do stupid things, they will rebel. I was at a conference where a very good ABA teacher told me that a nonverbal individual threw silverware because he was made to set and unset a table twenty times in a row. A better way to teach it, is at every meal you set the table, you eat and than you clean it up. He became frustrated because setting and unsetting a table is stupid and it is not real work 4:34

With nonverbal individuals, the best way to establish contact is to teach them words that mean something to them. Learning colors may have no meaning, but learning names of favorite foods and learning how to request these foods and get them has meaning 4:35

Comment From natasha  What advice do you give kids who get overwhelmed?? 4:35

When they get overwhelmed it is usually sensory overload. There are some kids who have extreme difficulty in restaurants or supermarkets and you are going to have to take them out of that situation and calm back down. I think a top area for research in finding resources for sensory problems because they really interfere with daily activities in noisy stimulating places such as restaurants and malls 4:36

Comment From Cathy  what do you think of social thinking therapy for toddlers? currently trying it with our almost 4 year old, I have a lot of parents asking me is it enough and that ABA is the way to go. Thoughts? 4:37

The most important thing with young children is having 20 or more hours per week of one-to-one teaching with an effective teacher that gets more speech, more social interaction, where you see your child progressing 4:37

Comment From anna  my son, now 8, was diagnosed when he was 2. your story has helped some of our family understand him better. he is now mainstreaming in school. Do you think mainstreaming kids on the spectrum is a good idea? 4:38

In young children I think it is really important for them to get contact with normal peers. I like to mainstream kids as much as possible, especially young children. I was one of the older teenagers that did not function in a regular high school because of all the teasing. I had to be taken out of that school. If you have a fully verbal teenager having this problem he may have to be removed from the situation. He should not be sitting around at home, but he should get a job and finish up his high school on line. We need to focus on getting him to be independent. For an individual with nonverbal or partially verbal, we have to before they age out, have good plans for their next stage of life. 4:40

Comment From Deja  My daughter was diagnosed with classic autism. She is in therapy and improving so much. Could her diagnosis ever change to a more high functioning autism or will she always have classic autism? 4:40

Autism diagnosis is a behavioral profile based on cluster of symptoms that usually appear together. There are some children that can improve so much, that even when they are carefully tested, lose most of the symptoms. 4:41

Comment From Lynn Shoemaker  I am a University Professor working with graduate students who will be teachers. What is one thing you want them to know before entering the field? 4:42

First of all, they need to understand the scope of the spectrum and at one end of the spectrum you can have people that work in high level jobs and at the other end of the spectrum you have very severe cases that remain nonverbal and have other medical problems. It is sometimes difficult for teachers to shift gears from one end of the spectrum to the other. One of my big concerns in seeing a real high level fully verbal child put in with a more severe class and not going anywhere. On the higher end of the spectrum we need to develop strengths and learn work skills. The other thing is, do not get locked into the label! Look at the child, not the label! Remember these labels are behavioral profiles and they are not precise. My chapter in 'The Autistic Brain,' on the DSM that doctors have changed the label of autism greatly over the decades 4:45

Comment From Frankie  How do you motivate yourself to do things when you don't want to or don't like to do them? 4:45

One of the things that motivated me to work hard at things like making signs or cleaning horse stalls, I enjoyed the recognition for managing the horse farm and making really nice signs. By doing these jobs I learned that even the best jobs have a certain amount of drudgery. I remember a time I had to paint a sign over when I did the lettering wrong. But I got great satisfaction when I got a project done and as an adult when I started designing cattle facilities, I looked at the finish drawing and the customer liked the drawing. Seeing the project built from my drawing was the biggest thrill of all. 4:47

Comment From Guest  Hi Temple. At what age did you become aware you had autism and when do you think it is best to let children know that they have autism? 4:47

You know anywhere from third grade to middle school is a good time. There is a wonderful book by Sy Montgomery, titled 'Temple Grandin' that is written at a sixth grade level with lots of pictures and drawings that tells about my life and about autism and I think it may help motivate a student 4:48

Comment From Guest  Hi Temple my name is kristi. My daughter is Ashli and she is severely autistic. She reminds me of you when you were younger. She doesn't speak and harms herself daily. Any advice on why she is hurting herself so badly? 4:48

Some individuals injure themselves have very severe sensory processing problems and verbal people that have self-injured have explained that they did not even realize they were doing it. Some of these individuals can be helped by an occupational therapist that is trained in sensory treatment and there are some that may need medication. I would recommend networking with parents and educators in your area to find the best professionals to go to. 4:50

Comment From Tracy  My son is 18 and has Aspergers. He found that his sense of humor and sarcasm helped him overcome bullying and teasing. In fact, it has even made him a bit popular at school. What worked for you? I am afraid as he starts college and the workforce, this may not be as effective or accepted. 4:50

That's good! Real good! He needs to find work where he can use this area of strength. He needs to learn how to willingly do assigned tasks and sometimes boring tasks. He also needs a manager that when he makes social mistakes, the manager will take him to a private office and explain quietly what he did wrong and the manager cannot be subtle. here is an example - A typical meeting might be, 'Calling your coworker stupid is not acceptable and you need to apologize to your coworker.' On my first construction project I rudely criticized some welding and I said it looked like pigeon do do. The plant engineer brought me to his office and he quietly said to me, 'We must nips these little cancers before they metastaticize. You will have to go up to the cafeteria now and apologize to Whitey the welder' and I went up to the cafeteria and I apologized for the rude language. it was done in private in the manager's office. 4:53

Comment From Nate  Hello. :) father of a 4 year old autistic boy. (Non verbal) I've always heard people say autistics don't really have a sense of humor. I disagree. What things do you find humorous? My kid loves cats and dogs and making fun of dad with his mommy. :) 4:53

They can definitely have a sense of humor and they can develop it over time. 4:54

Comment From Guest  how did you learn to manage time my daughter is about to get tossed out of woodrow wilson for being late to class but she doesnt have any sense of time any suggestions 4:54

I learn sense of time on our large school clock with hands. It had a minute hand that I could watch go around. The big hand on the clock moved every minute and it helped me to understand the passage of time. there was a constant emphasis on getting up on time and being at breakfast and dinner on time. I think that a clock with hands is easier to understand than a digital on teaching the passage of time 4:55

Okay folks we are going to take two more questions! 4:56

Comment From Allyson  How do I help my daughter (11) understand the importance of self care (hygiene, taking her medication, etc)? 4:56

I had a boss who very bluntly told me to use deodorant. There is a scene in the HBO movie is slammed on the table and that actually happened. I started having better hygiene because I wanted the job. 4:57

Comment From Traci  How do you feel about letting our kids play videao games? 4:57

When I was a child, watching TV was limited to one hour a day. The same rule should apply to video games or surfing the web. I think it is fine when a child comes home from school to play one hour of video games to calm down, but then they need to do other things. Unfortunately, I am finding too many smart young adults sitting at home playing video games all day and doing nothing else - not working is not acceptable. There are some individuals that can learn to program the games and if the child is mathematically inclined they should take some programming classes, or do art for video games. For every child that is capable of working in the video game industry there are ten more who have become recluse in their home 4:59

Comment From Guest  At what age did you start feeling personally responsible for your education 4:59

Mr. Carlock my science teacher got me interested and motivated to study. In my senior year of high school I turned around and started studying because I wanted to become a scientist. There is where a teacher can be a great mentor and get the child turned around. I also was able to visit him during my first two years of college. This helped me on the transition from high school to college. When i got to college I worked very hard, I sought out people to tutor me in science and math and took full responsibility to do well in college. 5:01

I have to say goodbye now and it was wonderful talking with everyone today!!!

5:01

More Scriptures!!!

I found this other autism mom's blog page, and she had listed all of these wonderful Bible verses for encouragement, etc.  Ah, timing is a wonderful and blessed gift indeed!

Here is the link to her blog as well:   http://autism45.wordpress.com

Scriptures That Ministered To Me!

(ALL from the Living Bible)–Written down by : Carole Norman Scott

Psalm 6:2,3 “Pity me, O Lord, for I am weak, and I am upset and disturbed.  My mind is filled with apprehension and with gloom.  Oh, restore me soon.”

 Psalm 13:2  “How long must I be hiding daily anguish in my heart?”

Psalm 55:6 & 7  “Oh, for wings like a dove, to fly away and rest!  I would fly to the far off deserts and stay there.  I would flee to some refuge from all this storm.” 

Psalm 25:15-17  “My eyes are ever looking to the Lord for help, for He alone can rescue me.  Come, Lord, and show me Your mercy, for I am helpless, overwhelmed, in deep distress: my problems go from bad to worse.  Oh, save me from them all!  See my sorrows, feel my pain; forgive my sins.”

 Psalm 27:7  “Listen to my pleading, Lord!  Be merciful and send the help I need.”

 Psalm 34:18,19  “The Lord is close to those whose hearts are breaking; He rescues those who are humbly sorry for their sins.  The good man does not escape all troubles — he has them too. But the Lord helps him in each and every one.”

 Psalm 50:15  “I want you to trust Me in your times of trouble, so I can rescue you, and you can give Me the glory.”

Psalm 57: 1-3  “O God, have pity, for I am trusting You!  I will hide beneath the shelter of Your wings until this storm is past.  I will cry to the God of heaven who does such wonders for me.  He will send down help from heaven to save me, because of His love and his faithfulness.”

Psalm 94:19  “Lord, when doubts fill my mind, when my heart is in turmoil, quiet me and give me renewed hope and cheer.” 

Psalm 4:3,8  “Mark this well: The Lord has set apart the redeemed for Himself.  Therefore He will listen to me and answer when I call to Him. 

Psalm 4:8  “I will lie down in peace and sleep, for though I am alone, O lord, you will keep me safe.”

Psalm 16:5  “He guards all that is mine.”

Psalm 31:24  “So cheer up!  Take courage if you are depending on the Lord.”

Psalm 32:7  “You are my hiding place from every storm of life.”

Psalm 34:1,2  “I will praise the Lord no matter what happens, I will constantly speak of His glories and grace.  I will boast of all His kindness to me.  Let all who are discouraged take heart.”

Psalm 34:4  “For I cried to Him and He answered me!  He freed me from all my fears.”

Psalm 40:1-3  “I waited patiently for God to help me; then He listened and heard my cry.  He lifted me out of the pit of despair, out from the bog and the mire, and set my feet on a hard, firm path and steadied me as I walked along.  He has given me a new song to sing, of praises to our God.”

Psalm 59:9  “O God my Strength!  I will sing Your praises, for You are my place of safety.  My God is changeless in his love for me and He will come and help me.”

Psalm 63:6  ” I lie awake at night thinking of You — of how much you have helped me — and how I rejoice through the night beneath the protecting shadow of your wings.”

Psalm 84:5-7  “Happy are those who are strong in the Lord, who want above all else to follow Your steps.  When they walk through the valley of weeping it will become a place of springs where pools of blessing and refreshment collect after rains!  They will grow constantly in strength and each of them is invited to meet with the Lord in Zion.”

Psalm 112:4,6-8  “Praise the Lord!  For all who fear God and trust in Him are blessed beyond expression.  Yes, happy is the man who delights in doing His commands.  When darkness overtakes him, light will come bursting in.  Such a man will not be overthrown by evil circumstances.  God’s constant care of him will make a deep impression on all who see it.  He does not fear bad news, nor live in dread of what may happen, for he is settled in his mind that Jehovah will take care of him.  That is why he is not afraid, but can calmly face his foes.”

Psalm 116:6  “The Lord protects the simple and the childlike.”

Psalm 119:49-50  “Never forget Your promises to me Your servant, for they are my only hope.  They give me strength in all my troubles; how they refresh and revive me!”

Psalm 145:17-19  “The Lord is fair in everything He does, and full of kindness.  He is close to all who call on Him sincerely.  He fulfills the desires of those who reverence and trust Him; He hears their cries for help and rescues them.”

Psalm 147:3  “He heals the broken-hearted, binding up their wounds.”

Purpose

Scripture for those who seek understanding of autism's role in a person's life:

1 Corinthians 12:18
But as it is, God arranged the members in the body, each one of them, as he chose.

2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.

John 9:1-3
As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

I can't answer why God has given us autism, but I do know that it is there to serve a purpose. And I find peace and comfort in knowing that there is a plan in place.

Lovely Poem

Read this in a book and absolutely LOVED it!! I had to share:

Autism Does Not Define Me

Accept me for who I am.
Understand that I may not always get what you're saying.
Trust that God has me here for a reason.
I am an amazing human being.
Socially, I might not fit in with society's expectations.
Mentoring can help me along the way.

Don't forget that I have feeling even if I don't express them.
Opportunities for my happiness are indeed possible.
Educate and encourage me without prejudice.
Show patience and kindness along the way.

Never give up trying to "get" me.
Ostracizing me will just shut me down.
Take time to try and come into my world.
Defining me as my diagnosis ignores my essence and best qualities.
Emerging talents may arise when you least expect them.
Friendship and honesty is valued to me more than you can imagine.
I am in need of love and tenderness too.
Never let me give up, especially when you see my mood shift.
Expect the unexpected and watch me enrich your life.

Many people will read this and I pray millions will act.
Embrace and empower someone with autism today.

--- Karen Krejcha
April 8, 2010

*sigh*

My heart is heavy today.  Even though the day started off well (I went to my rheumatologist for a 6-month follow up; everything came back normal, and I don't have to go back for another year!! -- and I lost 4 inches and gained 3 pounds in muscle!), I feel somewhat dejected.  Money is just a non-stop issue, and I'm not making any headway in making money.  Trying to get a job won't work; we'd have to put the kids in daycare, which would cost us a fortune and risk putting Ricky in someone's care who doesn't/won't/can't understand him.  Stupid student loans are taking our income tax refund from now until forever, so no money there.  Wages would be garnished to start paying them back as well.  I've made a real mess of things.

Unsure about the business situation.  I try and stay positive, but I can't help thinking that maybe this is not what I'm supposed to be doing.  If that be the case, I have NO idea what I AM supposed to be doing.  I don't get that little spark of excitement when I wake up, encouraging me to go out and "do."  It's so unstructured and unpredictable that I get frustrated and confused.  I don't know what I'm supposed to be doing when I don't have someone in front of me or when I'm not doing invites.  I'm also getting very annoyed at people who focus on the money and the lifestyle of the business; there is so much more to life than making money and spending it!  No one ever says anything about giving back to charity or doing any real "helping people" stuff.  I get that helping people lose weight and feel better IS helping them, but that's not the same thing as serving.

Went to an autism workshop yesterday on social skills.  There was a lot of good, interesting information, and I got some strategies to help Ricky when he gets a little older (they're mostly reading-based).  But, the speaker kept talking about "them" (referring to autistics) and I felt really uncomfortable.  When she tried to explain why it is that certain things are difficult for people with autism, she made it seem as if there was something wrong with us, that we should be pitied for our shortcomings.  I know she didn't mean anything like that by any means, but I still felt like I was an exhibit at a zoo.  Not that anyone was staring at me or anything.

Only one lady there knew I'm autistic as well (her son is on the spectrum, too), so there was no one there to relate to how I felt.  Even after I told the presenter that my son and I are both on the spectrum, she didn't ask for my input into explaining perspective or anything else that might have helped the group better understand.  I can't really explain what it was that bothered me so much; I guess it's just another one of those things where I didn't fit in, didn't know what to do, and just wanted to involved.  Granted, I'm not an expert on autism by any stretch of the imagination, but I can offer examples and explanations for some things as I have experienced them.  This is the first workshop I've been to since I was diagnosed; maybe that's what was bothering me.  It wasn't just an abstract discussion about anonymous children with autism, or even abstractly talking about Ricky.  It was specifically about me, something I could relate to, and I wasn't included.

Our support group meeting is tonight, and it will probably be cancelled afterwards.  The counselor is pregnant, due in a few months, there haven't been too many parents coming (I've been the only consistent one I know of), and the building has been bought by another company, so the doctors currently in the building are moving their practices.  Without a building next month and without a steady, regular roster of involved parents, we will probably stop having the group all together.  We're supposed to decide where to go from here tonight.  I'd like to go under the bed and hide.

Maybe I'm just having an existential identity crisis.  Who am I?  What am I?  Who/what am I supposed to be?

Disgusted

I'm feeling pretty sick today.  I didn't sleep well last night, so I was up uber-early playing on Facebook.  Well, before I get into that, perhaps some background:

We went to the Autism Walk yesterday, and it was a lot of fun.  Only thing that upset me was that NOBODY came to support us.  Dad was working (he's good), Trish could have come but was working in the yard, my sister - who knows.  Even my friend who was supposed to be with us cancelled last minute.  All the same, the Walk was worth it. :)  I may start "working" (?) as a Parent Leader with the PEN Project to help support other parents during ARD meetings and understanding IEP and 504 laws, etc.  I should be getting some more information about that soon.  Moving on.

Ian and I were talking last night after putting the kids in bed, and he finally mentioned that he didn't think his parents had ever acknowledged Ricky's autism, even though I have posted and talked about both Ricky and myself on numerous occasions, as well as sharing various awareness posts.  I agreed that they had not said anything to me, and since it's been 3 months since his diagnosis, they should have seen something by now.  They haven't even called to talk to Ian since Christmas, other than to call on Easter Sunday.  They didn't talk to anyone but Ian, and Olivia for about 2 minutes, and not once did they ask about Ricky.

We talked about how they seem to have really cut us off since Christmas, not calling to see about Spring Break, Easter, or graduation plans like they have every year previously.  So Ian called to ask what their plans were for graduation (they have to come to town for graduation anyway for my father-in-law's job).  His phone was charging, so he opted to use mine.  I warned him that if he used my phone, they wouldn't answer, and sure enough, he just got the answering machine.  He left a short message saying we were curious about what they were doing that weekend, and that it would be a good time to see the grandkids if they wanted.  No return phone call from them on either phone.

I had posted on Facebook inviting them to join us for the Autism Walk; even though I knew they wouldn't come, I still extended the invitation.  I didn't get a response from them.  I mentioned that to Ian as well, and he expressed some hurt feelings about being apparently shunned by his parents.  They don't like me, and I've told him that for years, but this treating Ian and the kids badly is not right. 

So, I was a little upset when we went to bed, and I had trouble sleeping.  I woke up around 3 or so, and since I couldn't get back to sleep, I hopped on my tablet and logged into Facebook.  Out of curiosity, I checked to see if they even seen the invite, and I found out that Ian's father has deleted me as a friend AND posted on his page about how his stupid rotary club or whatever it is he's involved with had had a charity fundraising drive for special needs kids!!!

This asshole has NEVER acknowledged his own grandson's condition, deleted me from his page so I wouldn't see the post (although his page is public, so I could see it anyway), and then brags about how he's involved in raising money to care for disabled kids?!?!?!?!  The hypocrisy is astounding!

I was so upset and angry last night that I didn't get back to sleep until close to 7; I was still half awake when Ian got up to get ready for work.  He had woken up while I was awake last night, so I told him what happened; he told me not to stay up all night focusing on it or I'd make myself sick.  I guess he was right; I WAS up all night and I feel like crap.  I told Ian that I was done dealing with his parents at this point; he was barely awake, so I don't know if he really understood what was going on, but I'm so sick of this kind of crap from them.

I don't care if they never see the kids again; they haven't made any effort to form a real relationship with them, and if this is how his parents want to treat my babies, they can just fuck off.  They have nothing to offer them, and they are definitely not providing a sound moral compass.

Progress

Ricky is moving right along with his vocabulary.  We made french onion-encrusted chicken the other night for dinner, and when he looked at the bowl of onions Ian was crushing, he said "oh that smells!" and made a face.  It is SO encouraging to see him making so much progress with his language, communication, and overall development!

I did a follow up appointment with the Burkhart Center a week or so ago, after they talked to his teachers at school, and we set up an appointment for them to do an observation of him for next week.  I'll bring him in and they'll do a series of tasks to see how he reacts, so they can try and elicit the same behavior he is demonstrating at home and school.  That way they can get a good idea of what exactly he is doing and how exactly we should respond.  I'm trying to get a game plan set up for this summer once school lets out and his routine is majorly disrupted.

While I was there, I was asked how he interacts with Olivia, so I spent some time talking about both of them.  Before I knew it, we were just talking about Olivia, and they think that she has some traits of Aspergers as well.  They told me to keep an eye on her, just in case, but didn't think that testing would be necessary since I should be able to help her.  During our support group meeting last week, I was the only one there, so we talked about Ricky and Olivia.  The therapist there also asked me if I had any suspicions of Aspergers with Olivia, and I told her that I had talked to Burkhart and what they had said.  She has actually interacted some with Olivia at some of the support meetings, so she has a better view of her behavior than Burkhart, who have not seen her.  She agrees that there are some strong traits.

Since we will probably be moving Ricky to the other school next year, I figure I'll just wait and talk to her teacher then, explain my concerns, and ask that they keep an eye on her.  Then we'll do testing if we feel it's needed.  I just don't want to NOT test her because I "know" she has Aspergers as well to avoid labeling, then find out that she needs some kind of accommodation later in school and have to fight to get testing done first before anything can be done to help her.  Not fair to her.

I'm coping much better with my Aspergers now.  I finished that book on dealing with anxiety and found a lot of things that have helped me pay better attention to my triggers and reactions.  Switching my anxiety medication to bedtime has helped me sleep better at night and wake up feeling more relaxed.  I don't have that immediate sense of terror that the day is going to be a struggle.  I didn't even realize I felt like that in the morning until it was suddenly no longer there. 

I'm making the kids penny boards to help with setting chores and rewards.  It will also help Olivia learn to add and understand money, since once you get the hang of pennies, you can start exchanging them for nickels, nickels for dimes, etc.  I think this will be good for both of them.  I still need to make a big visual schedule for us to use this summer, but I'll get busy on that next.  One day at a time.

CBT

Followed up with my doctor this afternoon.  He's not sure why the anxiety and depression seem to have gotten worse, rather than better, with this medication.  He said that medicines don't make these worse, only better; I have to disagree, otherwise there wouldn't so many different pills out there.  Anyway, we're going to try the 10 mg for the next weeks instead of moving up to the 20, and then see where we are.  He said we may switch to Zoloft if symptoms don't improve.  We'll see.

I finished my book Aspergirls, and it was really interesting.  A lot of things are applicable and really helpful, but still very general.  I've started getting more into the anxiety book, and that is turning some helpful suggestions.  I just finished the chapter on Cognitive Behavior Therapy (CBT), and I think there just might be something to it.  I read through the different cognitive distortions and maladaptive schemas, and while they don't all apply to me, several do.  I'm going to work out a worksheet of some kind where I can track my thought processes for each distortion/schema and then figure out a way to improve it.  Can't hurt to try. 

I'm trying to stay positive business-wise.  I thought today about looking for a part-time job for while the kids are in school, but once summer hits, I'm still going to be stuck.  I can either work for 2 months and quit, or I'm stuck paying for daycare I can't afford.  So I would have to work more to pay it, leaving me with less money.  Counter-productive to say the least.  Ian's not pushing me to find another job, and I haven't even talked to him about this.  I know it's not what he wants me to do, and I don't really want to do it either.  One of the distortions/schemas talks about feeling unable to achieve/succeed on your own without approval/support/validation.  Definitely an issue I'm facing right now.

I've had a few more people RSVP for the spa night on Friday, so I'm hoping that goes over well.  I'd really like to take a decent donation to the Burkhart Center.  Positive thinking is the basic tenet of CBT; might as well start working on it now.

Needs

Reading tonight. Found this to be particularly uplifting for my current mood.

Advice for dealing with women on the autism spectrum, from Aspergirls by Rudy Simone:

"...let her know that she's likeable, and we with AS [Asperger Syndrome] have a hard time with that. We're not socially accepted, and we have all these issues that make us difficult to deal with sometimes...Aspergirls get told by everyone from parents to job coaches that they should "fake it" to fit in. Imagine going your whole life faking your personality. Who could keep that up for long?...We need support -- moral, emotional" (pgs 221-223)

Coping is Relative

I started this blog as a way to vent and express my fears and frustrations with trying to understand and help a child with autism.  Since receiving my own autism diagnosis, I have come to realize that Ricky is doing a far better job of coping with his world than I am with mine.

Ricky is interacting with other people more and more frequently.  His eloping episodes, while not completely gone, are at least at a minimum right now.  He is excited about showing people what he knows, stopping whenever we're out somewhere to tell us what color and shape things are.  He recognizes his own name when he sees it written and will spell it out for you.  He calls more people by name now, although that is still a budding achievement. 

His vocabulary and use of language have grown exponentially.  The other night, he came in holding his stomach.  When Ian asked him what was wrong, he said "stomach hurt."  Stomach, you see, is a big word, and a new one at that.  When Ian asked why his stomach was hurting (this was after dinner, and he had eaten), Ricky paused a moment before standing up straight and clearly saying "chocolate candy?!?"  Like candy was going to make his stomach stop hurting.  It was very funny, and just goes to show that he really does understand what's happening around him and how to manipulate his environment.

We are dealing with non-compliance issues now; he will ignore you or just outright disobey while looking you in the eye, daring you to do something.  I think that is typical child behavior, and while it drives me batty and he gets his butt popped for it, I am happy to see that he is finally starting to behave in ways that are a little more "normal," for lack of a better word.

We should be having his ARD placement meeting soon to determine where he'll go to school next year and what services he'll receive.  Unofficially, I have been told that the recommendation is to move him to a different school that has an outstanding autism program.  Our home campus, where Olivia goes, does not have the right supports, and given my interactions with them this last year, I doubt they would make the effort even if they did have the right supports.  The school he is at now is the pre-k campus, since not all of the elementary schools have a pre-k program.  I wanted to keep him there, since he has made such great progress with his PPCD teacher, but she only teaches the PPCD 3-4 class, and since he will be 5, she wouldn't have him. 

The recommended school has several options for us.  They have a PPCD 5 class, which is what we'll probably put him in for next year.  After that, depending on his progress, we can hold him back a year and put him in kindergarten, put him in 1st grade, or put him in the PPCD 6 class, where he will continue to get one-on-one support.  I like options!  Since there's no sense in dealing with 2 schools (this year was an exception, as the pre-k program was elsewhere), I'm going to put in a transfer for Olivia as well.

Good things are coming in his future. :)

I, on the other hand, am not coping as well.  I don't know if it's because I have a different diagnosis than Ricky (Aspergers vs PDD-NOS), or because I have already gone so much of my life knowing I was different and struggling to fit in and make it without much success.  In any event, I seem to be taking several steps backwards instead of moving forward.

I started the Lexapro reluctantly to see if it would help with the depression and anxiety.  So far, the only thing I have noticed is that I am tired during the day (which I was not before) and I have weird dreams at night.  Nothing creepy or frightening, just weird.  I know it takes time for things to kind of sink in and start making a real difference in how you feel, but I'm not impressed so far.  I have a follow-up appointment with the psychiatrist tomorrow afternoon.

I found an Aspergers support group for adults on Facebook, and that has helped a great deal in being able to talk to people.  I have had several people from that page, which is really more of a forum, request me as a friend, and so I have been able to chat with them from time to time.  It really helps knowing that when you tell this stranger something weird that you did that day, they aren't going to freak out and block you. Most of them are older than me and have been dealing with this condition for far longer than I have, many with long-standing diagnosis.  There are a few, however, who have only been recently diagnosed, in the last few years, and they are in their 40s and 50s.  I'm only 31; if my life has been this stressful and unproductive, I can't even imagine how much more they suffered with another 10-20 years of not knowing.

There are a few books I've found online that seem interesting, and I got 2 of them.  One is called Aspergirls is written by a woman with Aspergers.  She wrote it with the goal of creating a sense of unity among females with Aspergers, and I have to admit, a lot of what she says, and a lot of what her interviewees say, is perfectly applicable.  It's been a very interesting read; I can't put the book down once I get started, so I've already read about 2/3 of it.

The other book is a stress management strategy guide written by a man with Aspergers specifically for people with Aspergers.  I've just started it really, but I am learning a lot.  The first two chapters defined stress itself and the body's natural reaction to it, and then how the Aspergers response is different.  Apparently, the limbic system in the brain controls our fight-or-flight response, and this is the reaction that causes stress.  When the stressor is gone (whatever is making you freak out), there is a secondary system that is supposed to take over and help you relax.  In autistics, that secondary system is dysfunctional, causing our bodies to keep running on high levels of anxiety because it doesn't recognize that the stressor is gone.  Then we're stuck in a constant state of panic, feeling that something is wrong, but since that original stressor is out of the picture already, we look to the immediate environment to find out what's still causing the anxiety.  Then once we find something that "might" be the problem, we create new anxieties based all of these other stressors.  So the stress never really goes away, and our list of things that freak us out just continues to grow.  It makes a lot of sense!!  I haven't gotten into the strategies chapters yet, but this is definitely a valued resource.

All that aside, I don't think I'm making any progress.  It's like knowing why I am the way I am is forcing me to go back and rip open old wounds to evaluate why the situation happened like it did.  You'd think this would be a good thing, but I'm stuck there.  I keep seeing myself fail at things because I didn't know how to adapt, but I don't see myself being able to change those responses now because I still don't know how to adapt. 

I know that will come with time, but in the meantime, I feel myself becoming more and more weighed down.  I feel paralyzed and depressed.  I'm not eating much, and when I do, it's not very good for me.  All I want to do is sleep.  I don't want to go out and do anything or talk to people.  I'm crying all the time with no reason.Admittedly, I did have a good time yesterday at my aunt's house with her and my cousin's for Easter, but it's because that side of the family doesn't judge and doesn't jump to conclusions or create stigmas.  They know about me and Ricky, and they were completely supportive in trying to understand what was going on and what we were doing.  Pleasant change.

Money problems are not helping anything.  Ian has been very supportive of me quitting my job last year to be available to the kids and working to build my Herbalife business.  Problem is, I'm so freaked out by social interactions and assumptions about what bad things "might" happen, that I'm not making any progress in business!!  I want to go out and talk to people, but the very idea brings on a panic attack.  I'm uncomfortable working in the new club -- we moved there unexpectedly and on VERY short notice (as in, "hey, by the way, this is our last shift at this club, and next week we'll be downtown" -- with about 15 mins left of that shift!), the people there, while I know them, are not my friends (not that I really have many anyway!) and don't understand my anxieties.  I get tired of being told "just talk to people" when it's so painfully obvious to me that if I COULD "just talk to people," I WOULD! 

I don't understand why they can't see that!  Even when I try to explain why I can't just walk up to someone the way they do, they don't understand.  I've been told to lose "can't" from my vocabulary (would love to!), "do the uncomfortable until it's comfortable," "I didn't have anyone to hold my hand, I had to learn on my own," etc.  That last one, especially, upsets me.  I don't want ANYONE to hold my hand and do it for me!  I just need the support to go out there and not be alone.  There for a while, we were doing things as a team, and while not "together," we were doing things as a group.  Going out to do invites, and having each of us go into a different store then meeting up outside.  That was doable, albeit very uncomfortable.  But at least I wasn't alone.  I had some support in getting started and maintaining my sanity during the whole thing. 

Now, we do nothing as a team.  I feel useless in the club, as even though we "schedule" when we're going to be there, I'm the only one who actually does, and then when I come in, the majority of the time, there are 4-6 other people behind the bar!  I'm not needed there with that many people, there's no room, they are usually the people I'm not friends with, and I don't want to be there.  There's no reason for me to sit around staring at the counter doing nothing.  I could do that at home -- and so I do.  That support system, however minimal, is completely gone now, and I don't have the social skills and confidence needed to strike out on my own.

Money is painfully tight right now, and while Ian has been very patient in trying to let me get this off the ground, he has decided that he can't wait any more and is looking for a part-time night job.  Like that doesn't make me feel like crap.  I can't function around people, I no longer have the needed support for business-building, and I can't even help take care of providing for my family.  Ian's not letting me give up or quit, but that just makes it that much worse.  Why should he have to work 70-hour weeks when I'm not producing anything?

Then things just start to cycle over.  I feel useless, depressed, and anxious.  I can't get people to understand me, so I can't get the basic help I need.  I feel like that commercial on tv -- "I don't have any money.  I can't get a good job.  I don't have the money to go to school."   Part of that may be the Aspergers talking -- I see a pattern in my life right now, and I stick with it.  I don't see it change because change is scary, but so is a lack of change.  I don't know what to do, what to think, or what to feel.  So I do nothing, think negatively, and feel empty.  Not really a very good way at coping, particularly since the autism is NOT going to go away.  It's been here my life, and it will continue to be here.  I've got to find a better way of dealing.