New Goals for Labor Day

By Labor Day I plan to get my life back (after one more trip to the CS Beach). My goal is to wake up in the morning and KNOW what I'm going to do that day, as opposed to what I HAVE to do plus all the little reactionary requirements of the day. I'm going to whip out a fresh weekly plan sheet template and fill out my ideal week (starting tomorrow, tee hee) and then, get this, I'm going to STICK to it! Ideally that is. Seriously, I've been in a reactionary funk and I'm ready to rise above and dust off my executive function (I loved that, mcewen!). I've been waiting for school to start so that I could have some structure and now that school has started, I don't know what to do with the extra time! Hmmmm, maybe I should WORK! You know, make some of that money thing that pays bills??? I think I have tracked my business a whole 2 times this month. It's been an average month, but I do have an ABOVE AVERAGE assistant. Much much love going out to you D!!!!! Without you, I'd be floating around without water wings and magic goggles.

2nd day of school

I picked up the kiddos today for the 2nd day of school. Of course the head-strong younger has just been dreamy for his teachers. And a whiny thingy as soon as I pick him up from school! Figures...

Eric has had a good track record so far. I think some of the things they have brought to my attention haven't been too terrible but I'm grateful that they are letting me know everything. I think the 5 page Eric Manual that i gave them on Monday probably helped. I hope it did at least. The only thing setting Eric off at school right now is snack time. I send gluten free snacks and he wants what all the other kids are eating. I sent a variety of snacks today but he wanted the vanilla wafers that the others were having. Hmmmmmm. I think I'll just send some gf chocolate chip cookies and chips next time. Maybe the other kids will want what HE has instead.

Both days that I picked them up Eric has been extremely hyper. Dashing out the door and luckily stopping at the curb and not running into the parking lot. It amazes me how many parents will stand around and watch your child dart out into danger and not only will hold the door open for him to meet oncoming traffic, but also won't get out of your way so you can catch him.

ASA mania

I did finally hear back from the local ASA chapter last week. By that point though, I had discovered that the ASA was meeting at Earthfare last Monday for some biomedical meeting. I had no idea what that meant or what that was or if it pertained to us or even if I agreed or disagreed with the concept, but I decided that being around others who might be able to give me some insight on anything was better than sitting at home learning nothing. So we made plans to go.

To my surprise, the biomedical meeting was being held somewhere else and a whole bunch of parents showed up for the regular meeting. Of the 8 parents there, 5 of us had children with Aspergers and the "veteran" mom there said that was the first meeting that she had ever been to with that many AS moms in the room, assuring me that God had plans for me to be comforted that night. And I concur. I had never felt so relieved in my life to be around people who spoke the same language and much more fluently than I!! They were soooo helpful and sooo unassuming that I understood anything and took the time to explain anything that the lay person wouldn't understand. It was amazing. I'm just sad they only meet once a month...

And I still don't understand the biomedical thingy.

A day at the beach

We spent the day at the Court South beach yesterday. I didn't work that much even though I brought my computer just in case. I spent the whole time in the pool or eating. Nice...it was like a mini vacation. The motivation was that the Beach closes for the off season after Labor Day and I thought that we ought to take the kids just in case we didn't make it over the weekend.

It was great to see the progression in Eric's social skills. Last time we were there, Eric wanted to play with this Dad and his little boy so bad but of course didn't know how to approach them. Well verbally that is. He had no qualms and approaching them physically - I mean to the point of getting in between them. I'm trying to get Eric's attention and apologizing to the dad. But i explained to Eric, if you want to play with them, then go introduce yourself, say, "Hi my name is Eric" (It was pointed out to me that AS kids will start doing that to everyone - even the ones you don't want them to - so I'll have to change that strategy.) He still wasn't comfortable even though I had given him the words to use, so I went up to the little boy and introduced them. What was hilarious was that he didn't want to play with the little boy. He wanted to play with the dad!!

So fast forward a few weeks to yesterday. There was a little boy there with his parents that Eric seemed to be interested in playing with and it was cute because they were swimming together. So I asked Eric, if he introduced himself, and he turned to the parents and said, Hi my name is Eric. Then the rest of the time played with the boy's parents! It was a riot.

I must say I am sooooo proud of Eric. We got him some water goggles on clearance at Walmart the other day (with Spongebob on them). Eric loves them (Ryan hates them). They are magic goggles! They gave him the confidence to "dive" and he is swimming (with water wings), but he gets in the #4 pool (4ft area of the pool - not the #1 pool or the #2 or #3 pool - those are for babies you know...) and will kick his legs and put his head under the water and SWIM! I don't know who taught him how to hold his breath that long (or even the concept of holding your breath underwater). I guess he learned it from tub time. But anyhoo, I had to take the goggles away near the 3rd hour because he was getting reverse raccoon marks. Yes, the white butts have also been exaggerated.

Well, that explains ALOT...

I googled Executive Function and then Executive Dysfunction and then Executive Dysfunction and Autism and came up with some very interesting reading...

Lazy Kid or Executive Dysfunction? - I like this article. It was both revealing and depressing BUT at least it provides strategies of where to go from here.

Neurodiversity - This is just a list of articles regarding the executive function in autistics that I should probably read in the future but thought I would post here for easy researching for others (and myself for later.)

Evaluating the theory of executive dysfunction in autism - This report is very thorough and well organized.

What is Executive Function? (From this link)

"Executive functions are the higher-order processes that enable us to plan, sequence, initiate, and sustain our behavior towards some goal, incorporating feedback and making adjustments along the way."

"The foundations for learning are attention, memory, and executive function. While most parents would immediately have some sense of what "attention" and "memory" mean, they may never have heard of executive functions. And yet without these functions, so many aspects of our functioning would be impossible or significantly impaired.

"Executive functions (EF) are central processes that are most intimately involved in giving organization and order to our actions and behavior. They have been compared to the "maestro" who conducts the orchestra. But what are these processes? The whole topic is very controversial, but there seems to be a consensus that executive functions involve (at the very least):

• planning for the future
• the ability to inhibit or delay responding
• initiating behavior, and
• shifting between activities flexibly

"If we break down the skills or functions into subfunctions, we might say that executive functions tap into the following abilities or skills:

• Goal
• Plan
• Sequence
• Prioritize
• Organize
• Initiate
• Inhibit
• Pace
• Shift
• Self-monitor
• Emotional control
• Completing

"We will consider these skills in more detail later in this article, but for now, it should also be noted that in considering executive functions, we will also be talking about "working memory," which is not purely an executive function but overlaps executive functions, attention, and memory. Also, although "emotional control" is included in this list, it is not a purely executive function."

FUNCTIONS AND SIGNS OF DYSFUNCTION

Let us take a closer look at each of the functions we identified earlier, and consider what dysfunction might look like. In looking at this chart, keep in mind that there are only a few examples of what dysfunction might look like. Function Description Possible Signs or Symptoms of Dysfunction Goal Identify goal or set goal. Acts as if "future-blind" (Barkley, 2002), i.e. not working towards the future. Plan Develop steps towards goal, identify materials needed, set completion date. - May start project without necessary materials - May not leave enough time to complete - May not make plans for the weekend with peers Sequence Arrange (and enact) steps in proper order spatially or temporally. - May skip steps in multi-step task - May have difficulty relating story chronologically - May "jump the gun" socially Prioritize Establish ranking of needs or tasks. - May waste time doing small project and fail to do big project - May have difficulty identifying what material to record in note-taking Organize Obtain and maintain necessary materials and aids to completing sequence and achieving goal. - May lose important papers or possessions - May fail to turn in completed work - May create unrealistic schedule Initiate Begin or start task. Difficulty getting started on tasks may appear as oppositional behavior Inhibit Stop oneself from responding to distractors. Delay gratification in service of more important, long-term goal. - May appear distractible and/or impulsive - May pick smaller, immediate reward over larger, delayed reward Pace Establish and adjust work or production rate so that goal is met by specified completion time or date. May run out of time Shift Move from one task to another smoothly and quickly. Respond to feedback by adjusting plan or steps. May have difficulty making transitions and/or coping with unforeseen events Self-Monitor Assessing one's performance and progress towards goal. - Doesn’t check to insure that each step is completed - Doesn’t monitor pace to determine if goal will be met on time, - Doesn’t check work before submitting it Emotional Control Regulating and modulating responses to situations. May exhibit inappropriate or over-reactive response to situations Complete Reaching the self-set or other-set goal. May start tasks but not finish them In other articles in this section of the web site, you can find helpful tips and strategies for addressing some of the deficits identified in the chart above.

With greater understanding, comes greater responsibility (and patience).

Balance

It has been a cathartic past few days. I literally stayed in my room all day on Thursday. Terry stayed home from work to take care of his "sick" wife. I left the room at about 5:30pm and we left the house to eat (at Pelancho's, speaking of margaritas, Kara, I just had a few sips though because I'm such a lightweight) and go to Borders to do some research. I usually work on Thursday evenings hosting a training event, but I have some wonderful people that I work with and they "took over" for me so that I could veg. I think I had just gotten to the point where I didn't have anything left to give and literally and physically had to shut off to recharge.

So on Friday I'm out of the house by 9am and took the kids over to the church to play while I volunteered for the mom's group at the children's clothing sale we had this weekend and then came home long enough to feed the kiddos and then took Eric to the eye doc to get his new glasses. I'm excited about these with the cable arms because 1) Eric picked them out when I blatantly had him choose between 2 identical frames but one with the cables and he chose these each time I asked him (you have to take a large enough sample size to get an accurate estimate when you have to dish out over $200 for frames and it is the 3rd pair you've purchased in 1 year) and 2) hopefully with the cables we will have less trips to the eye doc for adjustments, less falling off the face, therefore less losing of the glasses, and less glasses purchases! Anyhoo, then we got back and Cris took them to the park while I typed up an "Eric manual" for his teachers for Monday and got ready for date night. Terry and I went to the pre-sale and got Eric a bike for $5!!!! and of course some Thomas stuff and some non-button shirts suitable for church and the game Hullabaloo (I've wanted this game ever since it came out and Eric was about a year old!). Then we went for sushi (we do this every friday for date night) to a new place (new to us, that is) in Farragut by Steinmart - nice - they had a Go Vols Roll which we got. And of course went to a different Borders to continue our research.

On Saturday I marveled at the 2 days on the extreme ends of social interaction and how incredibly balanced I felt at that point (actually makes me a little anxious though). Anyhoo we had a great weekend at Volunteer Landing for the Dragon Boat races. The kids played in the waterfall there and put some training wheels on Eric's bike and played Hullabaloo (so fun!).

I had followed a thread in the angry wives club forum and in the effort to be positive and helpful to someone who was debating on leaving her man, I reinforced to myself just how blessed I am to have Terry and that he is willing to work on this together for our benefit and the benefit of our family. Like the Mozart and the Whale quote "Aspergers is a funny animal," how can someone appear so "normal" on the outside have autism? Where I have a daily struggle in communicating with HIM, his daily struggle is with communicating with EVERYONE. What is harder is sometimes he is aware of the struggle and sometimes he isn't. If you haven't watched the movie with the screenwriter's commentary, I recommend that you do. It was very insightful for me personally into the the leading lady's role, who is more like Terry - Appears normal, though eccentric and quirky, but has a real disability in certain situations which his comments helped me to understand the deeper meaning behind her character. She made eye contact, she had a job, she had friends at work, she had compassion and empathy for others in the group and could often communicate gracefully to them (and other times not so much). I am learning to stay on my toes and be flexible and adjust my responsibilities in our family without enabling him or being condescending. That goes for Eric too.

I'll need to finish the Eric Manual before his first day of school tomorrow. I used 2 books as reference: Understanding Autism for Dummies, which I was incredibly impressed with chapter 5 on Aspergers and the "Rage Cycle" and how to deal with it at each of the 3 stages, and Parenting your Asperger Child, which had a very insightful 2 chapters on "Identifying Asperger Subtypes" and "Reasons behind the Behavior." I am taking things from each book that are specifically Eric (since it is a spectrum, most books can be incredibly general and vague when you are trying to understand just one child). We bought the latter book. The 2 have probably been the most helpful to me in dealing with the day to day issues both the major and minor. It is interesting, the more I understand AS, the more traits I see in Eric and the more compassionate I become for what he has to overcome daily. It is a funny animal. I'm so grateful that he is being raised in a generation where there is more ASD awareness than in my generation. Now I just have to reach more of my generation to enlighten.....

Update on the school front...

We had "Get Acquainted" day at the Preschool today. I must say that I feel much better now that I have talked with Eric's teachers. They seemed very willing to work with Eric. They do not practice Time Out in the classroom, only redirection, which eased a lot of anxiety because I didn't want the other kids seeing him in Time Out all the time and be afraid of him (Time out doesn't appear to affect Eric at all). The other pit in my stomach was to warn them about his biting. I know they have a very strict no biting policy, as in expulsion after the 3rd time (Warning, Sent Home, Sent Home for good). They didn't immediately go at me like I envisioned in my head for weeks. I really felt at ease so praise God for that! I brought them a copy of the John M Ortiz lecture to listen to. Neither of them had heard of AS so I was glad that I had it available for them today. I just hope they listen to it before Monday. I'm trying to think of things that I need to make sure they know. I'm so new that I don't really know what to tell them until after it happens, even then I don't always know how to tell them how to handle it. I am experiencing this with Cris as she tells me about the "what happened today" episodes. I know what to do in the heat of the moment, but I rely alot on my instinct and how do I teach that to someone who doesn't know my child as well as me? When you know what sets him off then you can prevent a bite or meltdown or whatever. Once he is in the mode though, it takes spur of the moment creativity, a lot of patience, a lot of love, and a lot of acceptance.

I think the younger is going to have a lot of fun this year. His teacher Miss C told me over the summer she was looking forward to having him this year and I warned her that he was mighty strong-willed. Her response was the stronger the better! Yeesssss! The only bummer thing is that they don't allow cloth diapers in their class. They did last year. I guess because they are potty training at this age, I dunno, but I did ask if I could send one for them to put on him at the end of the day. That's one diaper a day, 2x a week that I wouldn't have to 1) pay for and 2) contribute to the diaper pile in the land fills.

The Coping Wives Club

I have found the best forum called "AS partners and relationships that work." It is not an angry wives club which I love because I do not have plans of quitting on my marriage. The above forum has members who are committed to making their relationships work and supporting each other in the process. There is even an AS guy who gives his perspective which is very helpful too.

One thing that was brought to my attention, which I must say am clueless about, is dysexecutive syndrome. Does anyone have any personal experiences of this with the AS adult in their life?

On your mark....

So how do I pull Eric away from the "Percy Saves the Day" DVD or YouTube.com (search: thomas the tank engine) without a prolonged fit?

I've got a great new trick that is working for now. If I ask Eric a question and give him multiple choice answers (beyond yes and no questions) often he will interrupt his meltdown to think (since I've given him the words to use) and then answer and then we whisk off to do that.

For example, the other day it was time to eat (chicken noodle soup, I think that definitely counts as 3 foods because of the chicken, noodles, and potatoes, but we got really fancy and sneaky and rrr-ed some carrots, tomatoes, and broccoli in the broth so that it isn't chunky! Sometimes if it is too orange he catches on...). So I said, "It's time to eat." "I can't like that, I'm watching Thomas." "You can pause it and watch it later but it is time to eat right now." Cue: Meltdown. "Hey! It's soup day (like every other day), so do you want the green bowl or the blue bowl?" They love those bowls because they have built in straws to slurp (or blow soup bubbles). Crying stops followed by "Blue Bowl!" "Ok let's hurry and get it." Lunch then commences.

My classic trick is "Wanna race?" (I love his goofy gait!) The younger is catching on to this too. It gets them totally focused on the race and not the fact we are going to tub time or nap time or some other non-preferred activity. Tonight their participation was duly noted. I lined them up and said, "Tub Time! On your mark..." Then the younger said, "Set..." and the elder yells, "GO!" And they raced down the hall to the tub. Totally cute.

To Label or Not to Label...

Terry thought that this email would make a good FAQ post so here are excerpts from my response to "anonymous" regarding this issue:

I have gone through the same fear over and over again. You can ask his OT. It took me almost 2 months to call to get an appointment after she suggested that we have him evaluated. Even AFTER his diagnosis I was still in denial because I hadn't researched it enough (still don't feel like I have). I mean, who wants their child to be labeled? No one does. BUT they do get labeled by people if not by professionals. Which label is better: autistic or bully? autistic or lazy? autistic or defiant? autistic or mentally retarded (because that is how he would be categorized in school based on their placement tests even though he has a gifted IQ in non-verbal skills)? autistic or picky? autistic or disrespectful? I can go on and on....when you understand what is going on in his head then you can react properly (or even be proactive to prevent the meltdown). Do I discipline him? Heck yeah. I do spank him and time out even though I know it doesn't hurt him physically and he may not learn the lesson. But it does calm him down enough that I can go talk to him about it. Does he get it the first time around? Heck no. And when he does learn the lesson and goes into "remission" does that mean he's learned the lesson for good? No. Why? because he is 4 years old and it takes a lot of effort for someone that age to "pretend" to think the way he is supposed to that is acceptable in the real world, in other words, neurotypically. He doesn't get to rely on instinct and be successfully accepted by others. As he gets older he will be able to "pretend" with less effort, but right now he doesn't understand because he is 4.

Here's an example of how I have to adjust my communication style with him:
So what do you do when you tell him over and over and over to do something (or not do something) and he keeps "defying" you over and over and over again? Get frustrated? Blow up? Maybe say or do something that you regret? Because I understand that he cannot process what I'm saying, I can then pick up a pad of paper that says "STOP" on it or "EAT NOW" and save the frustration on my end and his end. This works because 1) he can read and 2) he's a nonverbal communicator. It's complicated and it does blow my mind sometimes that he can read a word and know what to do but I can say the word and he's clueless. That's one of the thing they will work on in Speech Therapy.

...in his adolescent years, he probably wouldn't KNOW when to use it as a crutch or even HOW and, frankly, I'm not sure what he would use it as a crutch for...

...What sets AS apart from the other autism spectrum disorders is that he has normal or above average intelligence. If he used AS for anything it would be for something positive. Did you know that Bill Gates has Aspergers? Hmm I don't think I would be too disappointed if anything remotely close to that success story happens with Eric. But I'll be the first to admit that compared to other AS children, he's very high-functioning and he is a very fast learner as long as it is something that he enjoys (the speech therapist "play" with them so that they learn fast and it sticks with them - it's pretty fascinating)...

...All this to say, your fear is real and is recognized by me and probably most if not all parents who find out something is going on with their child, whether it is AS or ADD/ADHD or whatever. Gratefully AS is not a medicated syndrome. I guess what I was trying to say in my post was that these fears go away with the understanding of Aspergers. They got more intense as I had to sort out my thoughts and feelings of acceptance and denial and what in the world is there to come in the future. But like yesterday there are good days which are very good days and then there are bad days when I feel like he's in time out all the time (diet has helped this), and then there's everything in between. Is God working on my developing patience or what? =o)

...The only way that I can think translate what its like to explain to people who don't have AS or has never been around it, who just aren't aware, is its like parenthood. Someone who has never been a parent, though they may have been around children a lot, STILL doesn't know what it is like to be a parent and there are some things that you feel and do and say that non-parents just don't get and may even judge you for it. I am guilty of that. I remember when I used to get frustrated with my Mom when she would buy one nephew something and feel like she needed to buy my other nephew (his brother) something too because I have a thing about having Eric earn things. At the time I only had Eric. Now that I have Ryan I know exactly what she is talking about - well I may not know exactly until I am a grandmother of 2 boys...

I guess I've come a long way in my comfort level but we still haven't told anyone at church and some people have found out because they made their way to this blog whether they have posted a comment or not. I guess I'm still afraid that I might be hung up on the whole labelling thing, or maybe I just don't want to be too dramatic. I mean, he does masks the AS pretty well in public (why is that?) of course, as long as he is properly fed and underwhelmed.

Playdoh is fun....to put away

This is what my children love to do with Playdoh. It still develops fine motor skills to get it in those holes though, right?

At least the Younger will actually play with it....

...but he must wear sweatpants in 100 degree weather.

After reading one of the blogs on my reader, I was reminded of an incident that happened earlier this week and I can't believe I forgot to blog on it. First of all some background: when we went to Dallas last month, one of our roommates kept using words to describe bodily functions and parts that we have never used with him. For example, the word "butt." He told her, "that's not my butt, that's my bottom." But I guess it was one of those words that stuck in his mind for later use (Probably not what you're thinking). Last week we went to the Court South Beach and stayed all day and I took home 2 little brown babies. So when T came home I was showing him the kids' tan lines and I said "Look at his white butt!" Eric responds, "Butt? Butt's a word?" "Yes it is," i regretfully say. His face lit up, "Butt is a word...just like Bubble Scrubber!"

I'm still trying to figure that one out.

So today must be Butt Blog Day. Terry has joined in to celebrate!

I can't like that

The intro to Floam was interesting...He was so excited when I showed it to him through the packaging. "What's that?" "It's floam, its like playdoh." "Like playdoh? Lemme see it." His excitement turned into instance disgust. But very pleasant disgust I might add. He just flicked it off his hand with a half-smile (I'm being an optimist here) on his face and simply said, "I can't like that."

So they went outside to play with the playdoh. Oh yeah, and I figured out that he really isn't playing with it. He uses the scissors (from the letter/number kit I just bought) to cut the playdoh into "cookies" and then the last cookie he just mutilates with the scissors. Today I passed by when he was having playdoh time with Cris, and saw him stacking the Playdoh containers into a tower (no playdoh was out except what Cris was playing with). Short lived love affair huh?

So do I dare reintroduce Floam in the same DAY? Why not? He had a decent response. So during my "shift," as I call it when Cris is off duty, I pulled it out and spread it over my hand like a glove, and he stressed out about that. "Gotta take it off, mommy." Then I tried to flatten it to see if I could use the letter stamps, but that didn't work. It crackles a little bit as you mash it and I think that might have been hurting his ears by the way he was shying away from it. Finally I put it all back into the tub, no lid. I started playing with the younger who LOVES playdoh, and he's learning a few letters here and there. All of a sudden I hear, "Look mommy...holes." He was poking his finger into the Floam and there were about 10-12 finger indentions in the tub! So I made a bigger hole and called it a swimming pool, and then I made "stalagmites" and called them trees (which really impressed him by the way). He tried to make trees by picking a little bit and stretching it up (if you've ever played with Floam, that just doesn't quite work). So a little bit was picked off inadvertently and I asked him to roll it into a ball. "It's too small" So I gave him a bigger chunk, and he made a "ball" with it! He still had some stress lines going on on his forehead but he was really trying. Next thing you know I took the whole slab out of the tub and held it to him to let him squeeze it. I finally got this shot of him going "solo" with the stuff.
WOW, what a day!

Another part of today's WOW day was it was his first Cherub Choir rehearsal ever. I took him to his class and they were all sitting in a circle and he comes in and plops in the middle. Ms. N shows him where he needs to sit and he listened (he was still in the middle of the circle but not so obvious-we haven't told anyone at church about his diagnosis yet). I didn't see him again until they were dismissed 30 minutes later, and he came running out saying "mommy!" and ran to give me a hug. I was shocked and elated at the same time. Glad no one knew about his AS because no one would have believed me! On the way home, I tried to get him to tell me about his experience. "I can't say it." Then I went into the detailed questions, "Was Henry there?" "Yeah" "Did you sing a song? "Yeah" etc. He did try to tell me something but I'm not really sure what that might have been. But when we were almost home he said, "I like going to school." Wow wowee!! A clear, complete sentence AND describing an emotion!!!

I'm a happy mommy today!

[Newsflash: The younger just successfully used the potty for the first time! Could this day get any better?]

Calling all Thomas Fans

http://www.youtube.com/watch?v=1DWC_AD2gEM
http://www.youtube.com/watch?v=KGMdnvSJ0ug

This is Eric's new favorite site. The above links are pretty impressive.

Eric is so obsessed with Thomas and Friends (trains in general, um anything with wheels but trains would be #1) that EVERYTHING gets reference back to some episode stored in his memory or a train book. For example, today when we were reading books, I would read a line and he would say "Just like Bertie said" and then in another book the little boy's name was Edward and Eric says, "Edward is an engine." It totally fascinates me. (He is sitting in my lap watching me type and he said - "Hey there's Edward, and there's Edward word again."

OK now I have him occupied counting the water bottles under the desk so I can quickly wrap this up. (They are so neatly lined up along my desk's edge...)

Eric has recently had an aversion to playing with Playdoh. He hated it when we first introduced it to him at 2. Well he loved watching ME play with playdoh but wouldn't touch it (btw - we have 12 water bottles). Then we got him to play with it and enjoy it with cookie cutters and now all of a sudden he doesn't want to play with anymore. So I got creative and found a set of letter and number "playdoh stamps" and now he has a rekindled love affair with the squishy stuff.

Tomorrow we are going to try floam for the first time.

Party's Over

OK, It's been a long day of back to back pity parties. I've been on the phone ALL day with a friend with 2 special needs girls and my Mom and then my Dad. I'm ready to get up, dust off, and start learning again but in a productive manner. I just need to feel confident about my son and my husband and stop trying to categorize everything little thing - was what he just did AS or autistic or NT or whatever.

I love this quote in the article I read from an Autism Vox link:

"If you've seen one child with autism, you've seen one child with autism," Leebold says.

I felt a little uncomfortable when I met with the preschool directors because I felt like they were stereotyping him into the "They" category. They do this and They do that and They don't like this, etc. One of the directors has hands-on experience with working with a student at their school. But that's just it...A student...as in ONE. The rest is textbook knowledge. I know that it is not their intention to make me feel uncomfortable and that they truly have Eric's best interest at heart, but I wonder if they really understand what he needs. I asked them to give him a week or a week and a half (because he did really well at VBS) to see how he does before they change his curriculum. I said this because when I visited the class last year the teachers told me that by the end of the year (when most of the kids in this class will be turning 5 during the summer), they should be able to count to 20, know their alphabet, know their basic shapes and basic colors - um, Eric learned to count to 100 sitting on the potty when training (he actually figured it out himself using the pattern of numbers), he could say the alphabet phonetically before he was 3yo (aa, buh, kuh, duh... thanks to Leap Frog Letter Factory), he pointed to a stop sign one day last fall and said "hexagon," he also knew then the difference between sky blue and blue and violet, and to boot, he can do basic math and use an abacus (at least I think he can - I don't really know how to use an abacus, but he was figuring what 2 plus 6 was using it. (He turned 4 July 8th) Anyhoo their response was, "Oh no, we won't change for him, HE will conform to US." My reaction was a blank look. Smooth, Jen. Because of my lack of confidence at the time, and their knowledge of how "They" are, I wasn't sure if I could respond intelligently. Now I'm thinking what are they going to do when the other kids learn nothing because Eric keeps yelling out the answers (that is what he does to Ryan)? Surely they are going to have to change something in his curriculum. I'm going to hold on to the assumption that they are referring to social conformity, I'll just expect that they do it in a sensory friendly way.

What's the difference?

Or does it matter? I think I might be obsessing over an insignificance, but every time I open a blog I get different information about Autism versus Aspergers. Here is the latest finding:

http://psychcentral.com/lib/2007/aspergers-disorder/

This author completely separates them and doesn't even consider them related I don't think. I just really don't feel like I can move forward until I understand if I even need to understand.

Obviously I can't get a straight answer from the internet, I wonder if a mother of an AS child can help me here.

Amendment to the amendment

To clear things up, I found this on Wiki:

There is significant controversy over the difference between AS and the broader category of high-functioning autism (HFA). While neither AS nor HFA have universally accepted definitions,^[9] most diagnostic manuals distinguish the two according to speech development. Delayed speech indicates HFA; normal onset of speech indicates Asperger's.^[7] However, at least one diagnostic guide takes the opposite position; that delayed onset of speech favors a diagnosis of AS.^[10]

Some clinicians deny that AS is differentiated from other autistic spectrum disorders at all.^{[weasel words]} Instead they refer to Asperger's as HFA, or treat the diagnoses interchangeably, arguing that language delay is a difference in degree and not kind.^[11][5] Various tests have shown no significant difference between patients diagnosed with AS and those diagnosed with HFA.^[12] Even among those who feel that the differences between AS and HFA are significant, it is common for diagnoses to be influenced by non-technical issues, such as availability of government benefits for one condition but not the other.^[13][14] Due to the mixed nature of its effects, and continued debate over its definition, Asperger's remains controversial among researchers, clinicians, and people with the diagnosis.

I'm so confused. Eric's delay in speech to me is significant, however he IS talking and communicating with me and I know what he is trying to say 95% of the time (or at least can translate that di did id didii di means he's happy, excited, some good feeling) although his syntax and sentence structure is usually incorrect. His canned answer to any question that isn't about trains, or other wheeled objects, is "I can't say it" which really translates to "I don't understand what you're asking me." So what is the definition of significant delay? Anyone have an opinion on this?

Woo Hoo moment: Today we were clicking our heels because we overheard him ask Ryan "What are you going to do with that?" That is the longest, most complete, accurate, and appropriate sentence I've ever heard him say!

Appending to last post

My OT cousin sent us CDs of John M Ortiz from the last seminar she went to on AS and Autism Spectrum Disorder in Children and Adolescents and we started listening to them and they are very enlightening and he's pretty funny too. I've already decided to let Eric's teachers listen to it before school starts. As I was listening I started googling asd again to see the 5 "official" categories in the spectrum and I came across this link about whether Asperger and Autism are really different from each other. It was an interesting answer or non-answer however you want to look at it.

It's been a good day today.

Bloggers Rule and Aspie Quiz Results

I'm not sure why Google doesn't come up with blogspots on their searches. I have been googling for a month and haven't found nearly the amount of information on those sites as I have in the last couple of days from bloggers. (Then I discovered BlogSearch - if you haven't guessed it already, I'm new to this blogging concept). Anyhoo, today I got the most out of Joey's Mom site. I guess because I'm visual and the YouTube really got to me. Thank you! I laughed and I cried and then I starting thinking back - have I shed a tear at all about this? I don't think I have. I'm always around people - some who know and some who don't and I'm the leader of a group of women who thrive on my positivity (you're probably thinking, you gotta be kidding me) OR I'm with my kids - no wonder I'm an emotional mess! I am beginning to understand that it is ok and I'm going to be ok and they are going to be ok and everything is going to be OK. And tho it is a transition, I will eventually be on the other side. Being able to relate to other moms has hastened the process (there aren't too many in this area, er, I guess I should say I'm not aware of many). The lonely feeling is lessening everyday!

I have been clicking on links from different blogs and adding them to my reader and am very excited about what I can learn from everyone's experiences. Any comments you can leave will also help my extended family understand and increase their awareness.

On the other topic, my hub and I both did the Aspie Quiz on WrongPlanet and I scored as an NT with some aspie traits (personally, I think it is from my underlying ocd tendencies) and he scored some aspie and some neurotypical traits (126 and 97 respectively - can't remember my numerical scores). I think it said there must be a 35 point spread to be an aspie for that quiz, so he missed that by 6 points. He said for many of the questions he saw how he used to do, feel, act in those ways but not anymore. We both agreed that was correct since he has been through some "therapy" since the kids came along. That's free Occupational Therapy - you have to deal with odd smells, textures, flailing hands in your face, etc. Plus I am pretty outspoken and when he would do something that would tick me or hurt my feelings I would tell him, so that increased his awareness of how to "act" and what to say in certain situations. We've been married for 11 years so I guess that was his "speech therapy." And he said being a part of a fraternity really helped his social skills when he was in college and grad school. I made the observation that he is really high functioning and very well adapted EXCEPT when he is tired, stressed, or focused. Makes sense. Well I encouraged him to take it again when he didn't have me hovering over his shoulder.

Additionally, Eric wanted the Love Sac fluffed (they are wonderful!) and Terry agreed IF he put his finger in one of the holes (I think they are supposed to be vents - he has a terrible fear of them and will not go near the love sac unless the holes are unseen, in other words toward the carpet, which doesn't make them very effective vents, huh?). Anyhoo, he did it! Terry said he wasn't happy about it and it was the quickest poke in the world BUT he did it!!

My lil GPS

Today was such a fun day and soooo what I needed. I got out of the house (yay) and took the kids and Cris to the Court South Beach. It's not a real beach - a chlorine beach. A 16,000 sqft pool with fountains and mushroom shower and sloping "shoreline." We arrived there at 11am and stayed til almost 3 and it was a perfect day - not as hot as it had been (yesterday was 98) and it was partly cloudy which gave us some relief from the sun at times. I did bring my laptop so I could work and I did finish 5 of my 6 most important things to do today before I got into the pool. The 6th was to read a chapter in my book, but I can't read when 80's music is blaring across the beach. I start singing along with nostalgia and totally unfocused on the book! So I'll leave that for later tonight. Anyhoo, it was a perfectly balanced day (since lately I have been so roller coastery with my business and family). I was able to work, then play with my kids, then check my email, then get a tan, then approve a flyer for print for a Bridal Show I'm doing this weekend! I sent a detailed email to my assistant who showed up to an empty house today and when I got home all of that was done!

Ok so what does all of that have to do with a GPS? Nothing...except that we were on our way home from the beach and Cris stayed in the back of the van to feed them while we headed home (about a 25 min drive). We were chit chatting through the rear view mirror when Eric blurts out, "Mommy, our house is that way!" and sure enough I had cruised right past our exit! I didn't even realize it. He was even watching Thomas on the DVD player! It was amazing.

It reminded me of two other occasions when he exhibited this talent. We were going to ChikfilA (before we went gluten free) and I got into the wrong lane, so I had to turn right so that I could turn around and Eric threw a fit and hysterically directed, "we gotta go to chikalay! You're going the wrong way! Chikalay is that way! wah wah wah." He was 3 1/2 years old when that happened.

The other time was last weekend which REALLY impressed me. We went to the quad cities in Iowa/Illinois to visit Terry's side of the family for Great Gma's 80's birthday. When we came in to town from the interstate, I was spouting off directions to the hotel and we safely got there. After that we stayed in the hotel the rest of that evening after an exhausting 10 hour drive. The next morning we walked to the John Deere Museum (nice pix) and then we drove over the mississippi river to the Iowa side. All that is to say is that we never repeated a driving route. When we came back to the hotel after the party, we were looking for a Wal-Mart and we were all over the place and found ourselves heading back to Chicago - whoops. We turned around and found a Walmart on google maps that was on 4th ave, the same avenue as our hotel but in the opposite direction. So as we turned around to head back to Moline, we came to the 4th avenue intersection off the interstate and proceeded to turn right. Eric speaks up, "No Daddy that's the wrong way! My L-Max is THAT way! In the Hotel! Gotta turn around!" I was so amazed that he was so aware of the surroundings outside the of the car from his car seat nonetheless, AND the DVD player on to boot! (it was only on the first time we went through there, I think. I can't imagine why we would have brought it to the party).

Anyhoo, I'm sure this talent will come in handy in the future.

You have new Picture Mail!

This is a picture I took from my cell phone. I call it "Masterpiece before Destruction." The younger was still napping when we built it. AND we used every single piece of track!

I'm not alone

WOW. I found lots of helpful posts at this site:
http://www.wrongplanet.net/modules.php?name=Forums&file=viewtopic&p=746213#746213

They could describe things that I couldn't describe. As simple as some of it sounds, I couldn't really describe it without feeling like I was being selfish or egotistical. This post describes her husband which almost exactly describes my hub (except not mobile phones - maybe mp3 players).

Haven't been on the site for a while, but YES!!! my husband is an aspie. I didn't find out till my daughter was diagnosed a year ago - then he admitted the military had told him years ago he had autism but he didn't want to believe it.

Aspie's are ideally suited to the life he led, and they trained many of his 'traits' out of him - his eye contact is the opposite of most - so intense you wish he'd look away. However.... I have got used to the times when communication is 'not possible', at least he will talk about it the next day. Also the fascination with certain things (especially mobile phones and other electronics), not to mention he does most of the talking, even when people aren't interested. There are times I wish I could scream "WHAT ABOUT ME" and he could actually understand me at more than an intellectual level, and not just respond with his own emotional reaction and words. Empathy is something I no longer expect.

Still, at least he is not as emotionally manipulative as most men, and if you can keep things on an intellectual level (forget the emotion, and yelling shuts him down) he is better than most.

Good to hear from another NT trying to live with visitors from another planet.

Here is an Aspie's response:

All you can do is to tell him, in the most kind and loving way possible, how you feel about what he does and says. Be exact; no "you always" or "you never." More like, "When we go for a drive in the car..." or "When we go to visit so-and-so..." The less ambiguity, the better. Some of what you say may come as a complete surprise to him. He could have no idea that in trying to raise his own comfort level, he is lowering yours.

If you become more open about things that bother you, he might feel really awkward and guilty for not noticing in the first place. That's the trouble with autism spectrum disorders: always feeling on the back foot because you failed to live up to someone's expectations, and what's worse, that somehow you were supposed to know what those expectations were, but you didn't.

He may be unwilling - or unable - to stop himself from doing some of the more irritating things. How will you resolve that? Well, it's up to yourselves, isn't it? But at least he will be clear about the fact that you are irritated.

Be as loving and reassuring as you can, and don't wait until those little quirks of his behaviour stop being charming and start being teeth-grindingly annoying. An ability to see the funny side of situations is also a help.

When she says "He could have no idea that in trying to raise his own comfort level, he is lowering yours," I had an AHA moment. That is what I need to get over. I feel like I have to walk on eggshells around him when it comes to confronting him when I'm disappointed or irritated. It's hard to deal with him not being able to read between the lines or read my body language, when I'm mad, or sad, or excited. It's like he doesn't "care."

Anyhoo, I created an account on this site so maybe I can find it helpful in the future too.

What a hub!

Being the delegater that I am, I forwarded a few book titles (some extra ones other than the ones in my last post) to the hub to search amazon - I truly LOOOOVE that he is detailed oriented and has the patience for this kind of stuff. We really are a good pair! Here are his pre-buying comments. Any votes on which one we should invest in first?

---------- Original message ----------
From: Terry
Date: Aug 8, 2007 8:45 PM
Subject: Re: books

Aspergers in Love: Couple Relationships and Family Affairs (Jessica Kingsley, 2003). ISBN: 1843101157 (paperback, 232 pages). [autism,aspergers,adult,account] Maxine C. Aston.

Easy to read, in the excerpt, some revealing things about AS dudes. The chapters have a Key points summary and there is an index in the back. I'd say about a 4 star

The Other Half of Asperger Syndrome: A Guide to an Intimate Relationship with a Partner who has Asperger Syndrome (London: The National Autistic Society, 2001). ISBN: 1899280375 ; ISBN: 1931282048 (paperback, 88 pages, Autism Asperger Publishing Company, 2002) . [autism,aspergers,adult]

A. Bicknell.

This one was written as a "this or that might occur" not as a actual experience type book. 3 stars

Managing With Asperger Syndrome: A Practical Guide for White Collar Professionals (Jessica Kingsley Publishers, 2004). ISBN: 1843101998 (paperback, 240 pages). [autism,aspergers,adult]

Written by a guy with AS in his field (some Marketing). Would be good for me as he seems high functioning/high intelligence and operating in the real world. 3 star for you, 4.5 star for me

K. R. Lauries, ed..

Taking responsibility: good practice guidelines for services adults with Asperger syndrome (London: The National Autistic Society, 2002). ISBN: 1899280340 . [autism,aspergers,adult]

This one doesn't seem to come up... currently 0 star

Karen Rodman.

Asperger Syndrome and Long-Term Relationships (London: Jessica Kingsley, 2003). ISBN: 1843107341 (paperback, 272 pages). [autism,aspergers,adult]

Written from the point of view of a woman in your position (what the hell is up with my husband), and very good to read. Great reference in situ of the text, so you know where things are coming from. I'd say a 4.5 star for you and 4 star for me... I think you would get more out of it.

What about the wives?

I think we are in desperate need of a support group! I've seen lots of info and advice and support for parents on the internet and yesterday as I googled "Asperger adult support" I got lots of advice for the adult aspie. Then I stumbled across a site that had a post for support for the wives of AS hubs. There was an overwhelming response! Like 140 comments (where the others only had ~10). Of course I didn't read them all but it really made me realize how much we need support as much as the adult aspie. T is very high functioning and has never really had trouble keeping a job (maybe because of his servitude attitude) and for the same reason why he's never had problems keeping friends. Many of his friends however are from HS (his "studious" friends) and College (his frat friends) where we've decided that he was able to "reinvent" himself there. He currently has very few friends (other than "virtual friends" from his blogs - again where he can reinvent himself) as an adult and hasn't made outstanding efforts to create those relationships even though I know that he wants to. He really is an amazing husband and I couldn't imagine being with anyone else. I can't think of a single argument we've ever had in our 13 years as a couple (and we've had our fair share of significant and stupid ones) that cannot be explained by Aspergers!

All that is to say that on the outside, NO ONE would suspect that he has AS. (He did on our trip home from Iowa last weekend admitted to himself out loud which I thought was a huge step.) I do realize after reading some of the posts, the many posts that basically said "Other wives just don't get it," that I'm normal to feel the way I feel. HOWEVER I am not interested really in getting together and whining about my circumstances, I would much rather seek a solution on how to handle my emotional mess. The main emotion of lamenting that all of those arguments (about teeny tiny things that drive me MAD) are all in vain, wondering if it is even worth voicing myself when these things happen again because it doesn't really matter because things will never change. It is a very hopeless feeling, a disrespected feeling, a little value feeling. And I have no outlets other than this blog. It is so hard to feel this way because I've always been an achiever - if I didn't know the answer I could find the answer. If I didn't reach a goal I wouldn't quit, just reset it until I did. Constantly trying to better myself and my attitude and my faith. Always the happy go lucky person. The "Counselor" for other people who asked for my advice. But I've fallen in a hole and even though I am aware that my attitude is bad and that I've got to find a way for ME to adapt to my circumstances, I can't seem to find the rope to climb out of the hole.

Here are some potential books I was able to find online that might help. (I'd rather have a PERSON to talk to but it looks like I'd have to go to LONDON-hehe):

Aspergers in Love: Couple Relationships and Family Affairs (Jessica Kingsley, 2003). ISBN: 1843101157 (paperback, 232 pages). [autism,aspergers,adult,account] Maxine C. Aston.

The Other Half of Asperger Syndrome: A Guide to an Intimate Relationship with a Partner who has Asperger Syndrome (London: The National Autistic Society, 2001). ISBN: 1899280375 ; ISBN: 1931282048 (paperback, 88 pages, Autism Asperger Publishing Company, 2002) . [autism,aspergers,adult] A. Bicknell.

Taking responsibility: good practice guidelines for services adults with Asperger syndrome (London: The National Autistic Society, 2002). ISBN: 1899280340 . [autism,aspergers,adult] Karen Rodman.

Asperger Syndrome and Long-Term Relationships (London: Jessica Kingsley, 2003). ISBN: 1843107341 (paperback, 272 pages). [autism,aspergers,adult] Kevin P. Stoddart.

I guess I need to hit Amazon.com and get to reading!

Slowly getting over denial

I have been in a hole in totally separating AS from Autism. I don't know if my denial stems from trying to explain it to people and I'm second guessing things or seeing Eric on a Good Day and thinking no way. Then here comes a bad day. I constantly feel like I have to "prove" to people that he has AS and then "prove" to people that he doesn't have Autism. Or am I just trying to convince myself? I finally decided that I need help outside of my family - someone that I can talk to to help me through this transition. What made me decide? I had a meeting with Eric's Preschool directors yesterday and I'm realizing how much I don't know and how much effort and money I will need to put out in order to have the absolute best for him. I'm also realizing that I can't depend solely on Terry for support just from the simple fact that he also has AS. Not that he doesn't WANT to be supportive and helpful and do everything he can. Those that know Terry know that he is the servant type and service oriented so I know that that is what his intention is. However I need help from a professional. I feel so overwhelmed that I don't know where to start. I contacted the ASA of East Tennessee and this is what I found on their site: http://www.asaetc.org/

What is Autism?

Autism is a biological and neurological disorder which usually becomes evident before the age of three years. It is not a mental illness. It is a disorder in which communication, social interactions, and sensory integrations are the primary disabilities. Autism is found throughout the world in families of all social, ethnic, and educational backgrounds. The Center for Disease Control and Prevention estimates that 1 in every 166 individuals have autism (2000). Four of every five people who have autism are male.

Characteristics of autism:

Autism is often referred to as a spectrum disorder, meaning the symptoms and characteristics of autism can present themselves in a wide variety of combinations, from mild to severe. Although autism is defined by certain set of behaviors, children and adults can exhibit any combination of the behaviors in any degree of severity. Two children, both with a diagnosis of autism, can act very differently from one another. It should also be noted that any of these characteristics may also be present in a "normal" child or adult:

• difficulty relating to people, objects and events;
• repetitive movements such as rocking and spinning, head banging and hand twisting;
• insistence that the environment and routine remain unchanged;
• avoidance of eye contact;
• impaired verbal and nonverbal communication skills;
• use of toys and objects in an unconventional development; or
• limited intellectual ability.

What Autism is Not

Contrary to popular belief, children and adults with autism do express affection, smile and laugh, and show a variety of other emotions. Although children with autism are often described as being aloof or self-absorbed, they want to have friends.

• Autism is not the result of poor parenting
• Children with autism are not unruly or spoiled kids with just a behavior problem
• The vast majority of persons with autism are not savants, like the character portrayed by Dustin Hoffman in the movie Rain Man
• Children with autism are not without feelings and emotions

I will patiently wait to hear back from them to see if they can refer me to a support group.