Random Gut Reactions

Friday @ 1pm: I actually wrote this post last night and slept on it before I published it. I haven't re-read it before pushing the "Publish Post" button so I hope it has some flow to it...

This post is the result of random gut reactions to various things. The following articles spoke to me in various ways and I wanted to include them in my journal for various reasons. It's great to see that other parents can relate to what I experience on a daily basis (no matter how typical I sometimes try to make us appear on paper and in public). It's a relief to hear that people have seen the contradictions within the same person, the same day, the same 30 seconds, of one extreme to the other. I know that I'm incredibly blessed to be turned down for services because The Elder doesn't qualify. I know that I'm blessed for a thousand million reasons that somehow I married The Hub. But the blessings don't open a gate for us to escape autism.

Read this from a post at Momformation:

"Part of the reason I began writing about autism is that there’s so little information available. I know, it sounds nuts: if you Google the word “autism,” you’ll get over 18 million search results. But here’s the thing: most will focus on causation, many on treatment. If you read news articles, you’ll get the same result, except with more celebrities, statistics and fear-mongering. But precious few will give you any idea of what autism is like, really like, on a human level, day to day, for families like yours and mine.

"It’s not surprising, really. After all, autism is a spectrum disorder, which means that people with the same diagnosis can appear dramatically different. They may be verbal, nonverbal, hyperverbal. They can be acutely sensitive to sound, or appear as if they haven’t heard a word you’ve said. They can be constantly in motion, or quiet and still. They can crave touch, or avoid it at all costs.

"When my own son was diagnosed on the spectrum, I was shocked: he didn’t fit my image of what autism is supposed to look like. He’s funny, warm, playful and smart. He thinks farting in the bathtub is the the height of hilarity.He loves to play with cars, sing songs, look at his picture books and snuggle. But his language is delayed, and he struggles with peer play. He flaps his arms when he’s excited and can fixate on opening and closing doors when he’s anxious. He can count to ten in seven languages. but has trouble telling me what he did at school. He’s a handsome little bundle of contradictions, that one."

And I found this on Wrong Planet:

"I am a parent. I have Asperger's syndrome. I have two grown children, one of whom is on the autism spectrum. I am very aware of how parents can react to an autism spectrum diagnosis in their child. It's not hard to find descriptions of their reactions on autism support sites on the Internet or in the popular media. I know how my friends and acquaintances have reacted to their child's diagnosis. It's unfortunate that many parents are frightened by the diagnosis. It's tragic that they are frequently given endless amounts of bad advice which leads them to waste their time and energy and money. Some of the ways they react emotionally, and some of what they do to their child is, at the very least, less than optimal for their child's development."

"Autistic people contribute to their communities in many ways, no matter what constellation of obvious abilities and disabilities they demonstrate. Autistic people are valuable as they are. They don't have value only if they can be transformed into less obviously autistic people."

"Autistic children love their parents. You may have to learn to see how your child expresses affection and not take it personally if your child doesn't show affection in the way that typical children do. Deaf children may never speak the words, "I love you," and Deaf parents may never hear those words, but it doesn't mean that Deaf children don't love their parents. "

I think the most difficult part that I have as a parent and wife of persons with Aspergers Syndrome is balancing the the NT and ASD worlds. What the NT world expects in order for one to be successful. We can have a completely "NT Day" and then then next day be a total nightmare (we haven't had one of those is a while thank goodness). But worse, the flip flop of NT and ASD moments within the same day can send others confused, frustrated, angry, depressed, anxious, etc. Oftentimes for our household, it is these things that are the major contributions to the "social dysfunction" because the NT world doesn't understand and shuns them. Do the "Less Obviously Autistic People" of the world have it easier or harder? How do you "fit in" and embrace a neurodiversity philosophy at the same time? Is that possible? Is that smart? My boys have to "pretend to be NT" in order to be accepted, to survive a social without being asked a million times "what's wrong" or if they are "ok" or having a "good time," or to just have a conversation. The people who only know them when they are "playing NT" have no clue of who is truly in front of them. Of course to them they are "normal" because in some situations they have been adequately "trained" to appear so, whether through experience, habit, therapy, movies, or whatever. But at other times, they are "normal" because they naturally do and enjoy what would be considered "normal." I can definitely see how someone on the outside looking in could be totally confused by that. I guess that is why they are "Less Obviously Autistic People."

The Hub was raised in an NT world without knowledge of his ASD. He turned out fine. BUT I can tell how he is so much more relaxed to be himself and to be OK when he is not supposed to be himself ("play NT"). It is almost as if he took a bite of the apple and his eyes were opened and all these solutions to life-long questions and questions he didn't even know to ask came flying at him at warp speed. I experienced that too, but I'm sure for me it was on a much smaller scale. I have spent the last 19 months learning to understand why I was being driven away from my "perfect" family. What was wrong with me as a mother, wife, human being that I was so unhappy and unfulfilled among all these blessings? When we got a diagnosis, I had the most huge sigh of relief, and at the same time, a huge anchor landed in the middle of my chest. Since the diagnoses, we have been exposed to solutions that are working, and I am happier than I ever thought I could be. I went from feeling stuck to lovestruck. When The Hub does something quirky, it is so neat to understand WHY and be ok with it - to "forgive" it, if you will. The same for The Elder. I'm so relieved that he can even answer the question WHY now. It helps me get to answers and solutions so much faster, even though he still isn't always able to effectively articulate himself, especially in high stress situations. Usually I can translate it pretty fast. He is a happy kid I can tell. Now just like his dad, he would have turned out fine, but now he is going to be better than fine...because he bit the apple at 3 instead of 36.

They didn't all of a sudden become different people, I just had to muster up some patience, compassion, and change my perspective. The NT world sees an "angry face" but I see that his ears are hurting and he probably wants the radio turned down (or a different station). The NT world hears doors slamming but I hear a person so hyperfocused on a thought or task that he forgot to monitor his proprioceptive reaction. The NT world witnesses a bite (for The Elder) or an uncomfortable stare/complete avoidance (for The Hub) and I see him at a loss for words to describe either or both his positive and negative feelings that may or may not be directed at me. The NT world thinks he is rude, disrespectful, and only thinks about himself, but I can just laugh at the irony in that, resting in peace to know that I have true gentlemen in my house. The NT world says "Oh he's just being a kid" or "that's because he's a man" and I say that those are also labels. I personally like the Asperger Label better because it initiates feelings of passion to succeed and a desire to overcome obstacles, whereas the others elicit feelings of complacency, a dead end, lower expectations, regression to being average. But I guess that is what "normal" means huh?

Then no, siree...I do NOT have a normal family and I love and accept them!

The Neurotypical Meltdown

This post is in reflection to the Hub's post from today. We have been married for 11.5 years and just found out last month that he has been a lifetime member of the Aspergers Club, but never knew it. It explained ALOT but it also created a lot of confusion and anxiety and really re-learning how to be with each other. I am pretty fast-paced (great combo huh?) and when I think of something it is out of my mouth and in the air in a flash until I decide it isn't a great idea anymore or I thought of something bigger and better. I like feedback. Preferably instantaneous feedback. Also, the woman in me will drop hints and clues to what I really am thinking/talking about and I also expect my body language to convey that I'm clearly ticked off, or happy, or bored, or indifferent. Now that I know to chuck all of that out the window, it is quite a challenge to remember to not be the same person you were with your mate whom you've shared a life with for 13 years.

I keep forgetting to not leave room for extraneous interpretation. That includes "hinting" and conversely "indifference."

It really didn't bother me that we didn't go to the basketball game. It didn't bother me that we had to turn around for the blanket (I was playing a game of solitaire, therefore I had no reaction - WAY too much room for interpretation there). I really didn't care about my gloves (I literally said, "It's ok, they were a buck on clearance at Old Navy," and that was translated to "they were my favorite.") And I really didn't need Cracker Jacks nor did I expect a surprise (though I do like surprises when they are concerned with good things for me!). I tend to fixate on things/concepts/events etc. to the point where I think about it and talk about it without even knowing how much I am mentioning it. I think perhaps that is how the whole Cracker Jack incident came to be.

I DID however had an NT meltdown as a result of the "poorly asked questions." I admit to that. I also had another NT meltdown Sunday morning so that our routine was "thrown for a loop." I take responsibility for that one too. (Gluten is evil - and my patience ain't so hot either...)

I started reading Look Me in the Eye by John Elder Robison today after some conversations on Beyond Understanding and I was simply amazed at John's explanation of his thought process of why he was smiling at learning that someone had gotten killed. I mean in the "textbooks" they tell you in general that you need to give Aspergians "think time" once presented with information. But his actual thoughts make so much sense. You know, I can see this happening in the Elder's mind, but because he is 4 and I know most of what goes into his mind, and am informed about what he is learning when he is at school, it is rather easy for me to follow his train of thought. For an adult whom I've only known since 1994, it's not as easy to follow the Hub's train of thought and I only have my neurotypical expectations to compare him to...Cue: NT meltdowns.

The other great resource is a link I stole from the Hub's post. This is very very eye opening, a wonderful perspective of the "art of communication" and beautifully written.

Gluten is evil

We've had a pretty good weekend this weekend (until today). Friday is date night and that same day the Hub got us free tickets to the UT basketball game. (He already swung us some free UT vs Vandy football tickets, so I was feeling like I was in grad school again.) Anyhoo, because Friday there was a Eye Dr appt for the Elder at Children's Hospital (downtown), a stranded Hub (downtown), the game (downtown), and date night dinner (possibly downtown), I decided to have The AP take the kids to the Fort Kid playground (downtown) so there wasn't too much driving back and forth and less vehicles being used. The AP dropped me and The Elder off at the hospital, dropped the car key off at the Hub's office, and then took The Younger to Fort Kid. After the Doc appointment (which went great - no additional vision loss and no more patching!!!), The Hub picked up me and The Elder from the hospital and we dropped off The Elder at the playground so we could go to our date night dinner and the game.

A Beautiful Plan. So, I ask, where are we eating? Chesapeake's - yummy - I was so in the mood for steak and seafood. Extravagant but we hadn't had much fancier than Moe's Grill on Date Night in a while. Then I ask, who are we playing tonight? Oh we aren't going to the game. Wha? Then the typical AS explanation that I didn't give him a "Yes, let's go to the game, I'll rearrange the transportation logistics to specifically accommodate that option" type answer that left NO room for interpretation. However, since I'm not a hard core basketball fan, just enjoy watching it, I wasn't too upset, because hey, we were going to have steak and seafood!! Looking at the clock it was not quite 4pm - is the restaurant even open? What are we going to do for a half hour until it opens? Panic...slight change of plans...yes, those freak out adult aspies too.

Just then.....The Hub did something truly Un-Aspergian......spontaneous......and a major change of plans......"It's early, let's drive to Sevierville." WOW! I really felt young and free now. (I wonder how long he's kept that option in his back pocket for a moment just like this?) We drove through the mountains to the next city over that is known for it's outlet malls. We went to Conner's for steak and seafood, did some shopping for the kids (yes I guess we are still parents), and came back home.

So let me get back on track with the title of this post. At Conner's the waitress brings us some rolls. Boy they look good. And they smelled so yummy. But being the good gluten-free role models we are, we passed and put the plate very far from temptation. (I didn't do so well with the casein free - I had both drawn butter with the crab legs AND got a slice of fudge.)

Then on Saturday, it was the first football game either of us had been to since graduating. (College kids look sooooooooooooooooooo young! geez!) Our former tradition was to get a Touchdown Frank or two because they were amazingly tasty. But seeing that they were no longer in the same packaging (used to be in paper-foil, now they were in non-biodegradable, bird-killing plastic tube bags that we could see floating around in the stadium), we convinced ourselves they wouldn't be as tasty and again exercised restraint and got popcorn.

By Saturday evening and getting stuck in post games traffic, we really wanted to sit and eat and let some traffic subside. So we went to our fave little Thai hole in the wall for sushi and pad thai. Yes we know, the soy sauce has a trace amount of gluten, but that is not what was evil. It was the bowl of fried Wontons that they put in front of us. When did this start?? Thai cuisine was the one place that we didn't feel the temptation!! But the table was small, the service was slow, and the bowl seems to gravitate to our fingers. I literally only had 4-5 and started with small ones. The result? I have slept all day today and have been cranky during the waking moments. I missed church, a baby shower, and the last day of my bible study. And I don't even want to think about putting up the Christmas tree like we planned to do today. Maybe I'll have another cup of coffee to get me through these last hours of the day.....

180 degrees and green water

This morning started out like a mess. I mean a real ugly mess. Because it started messy, I just couldn't get motivated. I knew that Eric's teacher was coming at 1:30 so the only thing I was motivated to do was clear a space for us to sit on the couch. First thing I did in the morning once Cris took over Ryan was email Terry's psych, the Super Doc. I had a lot on my mind and I wanted to get that to her asap before I forgot that I was feeling that way. Soon after a friend of mine called and by the end of the conversation I was yelling. I guess I had a lot to get off my chest! I bet she's real glad she called me today.

Anyhoo, I was a little nervous, ok a lot nervous to meet with his teacher. I didn't know what to expect. Up to this point, my experience with meeting with his teachers had not been favorable and involved a lot of finger pointing (in both directions). So I tried not to stress about it and I played a little solitaire while Eric watched Backyardigans (aside: I was appalled at a Charter commercial that was played during that show where they said the word sex - I mean you don't let echolalia ears tune into that! You just don't! - I'll have to rethink the watching of Nick Jr. - I mean they were also advertising Nick at Night during day time hours using Dora!! But I digress even though I'm really really concerned about that.) When Eric's teacher got here, she was actually human. I mean there was no Cruella Deville. Cris sat in and she gave us both great strategies to use and amazing insights to some of his antics, for example his throwing objects and his inappropriate laughter (which gets under my skin...grrr). She also gave me much comfort and reassurance of feeling the way I was feeling overwhelmed. Terry had been diagnosed after our IEP meeting so I hadn't really been in contact with her since then other than pick up. So I relayed that to her and she looked at me like..no one has ever suggested that you before? In other words, she had already figured that out just from observing him at the IEP meeting and at drop off. Crazy the difference it makes when you get around experience professionals. So she was even able to help me with some parenting strategies that I could easily teach Terry to do. See if I can show him what to do and do it right from the beginning then we are OK with pretty much any technique. But if I teach it to him wrong, it will be hard to get it corrected and executed consistently (no pressure). All in all I was pleased with the meeting.

I left shortly after she did to meet Terry at the Super Doc's office. I hadn't really had much communication with him since the morning from hell. After the great meeting, I was having a hard time remembering if I was still mad at him or not. Sure glad that I sent the email to her, however I didn't go back to "study" it to remind me. We got there at the same time and about 15 minutes early which isn't like us at all. But he asked about the teacher meeting and I started to tell him some things that we were doing right and some things that we were WAY off on. As soon as I stopped talking for him to get a word in about it all, he started talking about stocks. "So are we turning this into a special interest conversation?" Which I meant jokingly and I think he got that (or he completely missed it) because he continued to talk about how our money was doing. I was happy to hear it was doing very well, but I wanted to finish the Eric conversation before we went into Super Doc's office so he would have the info before I told her. He obliges. She comes out to get us in the waiting room and we are all cozy on the couch like a couple in love looking in my notebook of notes - a complete 180 from what she's probably read in my email (and evidently T's email too). So glad that I sent that email or it might have been a completely different session!! She gave us great advice. She even recommended some drugs for me (YAY - bout time!) and I left there soooo relieved to have solutions and strategies. Just what I had prayed for. All I needed was SOMEONE to tell me what to do because I didn't know where square 1 was to start there. She also prescribed me some "me-time." She said I've got to got to got to have it everyday. It was a must. Do it like it is medication. That made me feel a little uncomfortable. I already feel like I don't do enough and to procrastinate on purpose and for my own personal benefit just makes me feel uneasy.

So on a slightly different topic and to piggy back on the potty post I made earlier. Eric's teacher said definitely have a routine BUT switch it up a little. So tonight for tub time when the boys weren't looking, I squirted some blue food coloring into the water. It actually took them a while to realize the water was blue - the Younger noticed first. (I was scared for a moment that it might dye their skins and I had visions of the movie Big Fat Liar and the little blue man.) But they had a blast in the blue water. We only gave them Dixie cups to play with (instead of the usual buckets of bath toys). Eric says, "We can use brush-your-teeth cups in the blue water?" So cute. Well Ryan used the potty before bath time like he always does. Before he got back in the tub he had to go again. Well they are in the tub I look over there and he's got it pointed straight up and he was making a little fountain. "Not in the tub, we do that in the potty!" Terry says kinda under his breath, "You might make it green." Supersonic Eric Ears heard that and said, "I can make it green?" and goes to contribute his own yellow coloring. Ho hum. Time to get out. And what does Ryan do? He goes to the potty again. Geez he musta had a lot of liquids tonight!

Forcing my chin up

I woke up a little stressed this morning. Like I was in a hurry and was forgetting something. Today was my open house and I felt very out of control because I hadn't been a part of the planning process this year. I knew I had plenty of time to be ready but I still was anxious. Perhaps because I had neglected some tasks the night before and I was trying to keep a bunch of little projects in check in my head. I also was overcome with grief for various reasons. Particularly the death of a 55 day old baby due to Strep infection and a college friend's child undergoing a major surgery scare. To top everything off, I'm extremely exhausted. You would think that getting an extra hour this weekend would make me less tired, but I'm finding myself unable to stay up later than 9pm. And I'm cold.

I think the gloomy attitude started on Sunday when Eric didn't have a good "report" in church. I hadn't had to defend him in a while and I guess I took for granted that "relax and enjoy" feeling was going to last. All of a sudden I couldn't get the scenario out of my head long enough to stop tensing up. Monday he came home with mostly "Hard" marks. I'm meeting with the teacher tomorrow and I had requested that she help us with church situations, both sunday school and cherub choir. But she wants to discuss strategies for home first and get that under control before we move onto the community. I'm thinking - We're good at home. it's the community that is stressing me out! (I wonder if she can help me strategize for Ryan's NT meltdowns - sometimes I think his are just as stressful or more because he is so sensitive (read: melts down often) and so strong (read: painful to others))

I took out some gloominess on my poor husband. I got a little frustrated that I had everything up in my head and if I stop thinking even for a moment to grab a pen and paper to jot it down, my mind literally goes blank in 2.5 seconds. I know he wanted to help, but he just stood there and I had to stop thinking about everything so that I could give him a detailed enough direction to jar him out of paralysis. And then I lost my train of thought (very easy to do, period, but add stress to the mix and it is just a given). Sometimes I wish I could think and allllll those thoughts somehow miraculously wrote themselves down on a piece of paper. These are the times when neither one of us can think straight and it gets chaotic in the household. And we as parents have to be responsible for 2 boys. These are the days that we call the "bad days." I feel unbalanced, out of control, overwhelmed, and just want to lock myself in my room.

I read an article that I linked off of Autism Vox that really got to me. This article really got to the core of my stress I think. How Autism is hidden, especially Asperger. Both Eric and Terry appear so typical, not just outside appearance but even in activities and roles that they have learned to do from watching a movie, or a similar social situation. But during "bad moments" it is so obvious that they are struggling with communications and social appropriateness that they may or may not even be aware of themselves, depending on how severe the meltdown. They are brilliant, yet can't answer simple questions or learn from their mistakes (unless of course it pertained to their special interest!).

I'm pretty confident that something amazing is going to come from this. Maybe not in my lifetime, but I believe that lives will be changed for the better because of our "hardship" right now. I wonder if Bill Gates or Einstein's parents knew what Billy and lil Al would do for mankind?

Misdiagnoses are really a pain (a summary)

I think we've had a lot of undue procrastination of getting help and services, not to mention the mental anguish we all went through (or maybe it was just me knowing what I know now) of bouncing back and forth between possibilities that truly required different approaches often to extremes, where one choice may be absolutely right, the best thing I can do for my child/husband OR may be absolutely wrong and the worst thing I could do. So a confused mind does nothing right? Being in limbo on what to do and how to feel is like sitting on a fence - Ouch - but in our situation, not of our own choosing. For my journal's sake, I want to take a look back on our time line....

In June 2006 the Elder became very aggressive at school, 180 degrees of his usual temperament. We removed him from the program due to ugly comments from parents, teachers, and directors who swore they "wanted to work with him." (Translate: don't really want to reimburse your tuition.)

In July 2006 he turned 3. We began seeing a family therapist through EAP.

In August 2006 he was enrolled at Montessori and after 3 weeks was asked to leave.

In September 2006 we established a co-op with his best friend's parents to rotate "home-schooling." Shortly after we had to cease due to biting.

In November 2006 I enrolled him in gymnastics. Behavior at the gym was terrible, but was getting slightly better at home.

In December 2006 the Elder was evaluated through the Knox County School system who said that he was definitely gifted but did not see sufficient evidence of Aspergers to provide any services. (I'm like, what's Aspergers?)

In January 2007 the Elder was evaluated though a private services group and was tagged with SPD (sensory) and delayed motor development. By the end of January he was referred to a psychologist.
Also in January 2007 we had our last appointment with the family therapist who, since July 2006, has insisted not to worry, he will grow out of it, he's just being a boy, everything is normal, just continue being the wonderful parents that you are. Which is exactly what we want to hear, but it wasn't what was happening.
So we were grateful that the private group offered him OT because now we can immediately start solving the issue instead of "wait and see" if he does or does not grow out of it.

In February 2007, I refused to have him evaluated by a psych claiming "he will grow out of it, he's just being a boy, everything is normal" Besides, looking at the DSM criteria, it all sounds like Dad so the Elder just probably takes after Dad and Dad is ok, right?
I did, however, agree to speech therapy, only after confirming with a speech pathologist friend of mine that it was a good choice.
Also in February 2007, I met with the preschool directors to make sure they were ok with my enrolling the Elder into their program given the new information I've been given and the possibility of Aspergers. "Oh certainly, we've dealt with one before." But they did encourage me to go through with an official diagnosis so I have to give them credit for that. There's a silver lining for everything right? So we call to get an appointment with the "best child psychologist in East Tennessee," and we are told, "We'll call you in June to make an appointment." Not an appointment in June, but they will call me in June. Hmmm, it's February....busy guy....he must be good.

In March 2007, the Elder was evaluated for a feeding group for which he did not qualify because he happened to eat everything (or at least try everything) he was offered. Something that doesn't occur at home, but he happened to "perform" well for them, so as joeymom might say "No services for you!" This is the month we also started "brushing."

In April 2007, I am about to go mad in the "limbo state" of not know what in the world I'm doing and not sure what to think or believe about my son OR my husband. Who do I believe? Who do I give the hand to? Seeing how overwhelmed I was and it still being 2 months away from June, the OT referred me to another psychologist. One she had heard nothing about but someone else referred this lady to her. We have 3 sessions with her. The first one I was allowed to sit in on but I didn't realize that she was evaluating how he plays with me (she failed to tell me that). I thought I was just observing. So I didn't know if I was supposed to play with him in a playful way, an educational way, or what. No matter what I was not impressed after the first evaluation.

In May 2007, we were sent to a neurologist who said she saw no signs of brain injury nor did she see signs of sensory dysfunction. My hub was like WHAT? Fortunately he had a polo shirt with buttons and he walked toward the Elder with the buttons out and he just about wanted to jump out the window. The Doc: "Hmmmm maybe we will have him evaluated in 6 months."
This is also the month that we were hit with a gigantic baseball bat. No evidence of any ASD. not ANY. none. zip. nada. now what? We were tasked to stop reading Asperger books for both son and hub, given referrals for parent counseling and marriage counseling. I tried not to be offended. It didn't work.
We also had to stop therapy this month with the private group because insurance all of sudden stopped paying for it.

In June 2007, we finally got an appointment with the "best child psychologist in East Tennessee" as a second opinion. Not because we were convinced that he had ASD, but because now we had no idea why he was behaving the way he was and wasn't "outgrowing it." Something was going on and we just needed a solution, a confirmation of some sort that we either needed to be doing more, or that we were already doing all the right things. Even though his first impression was no ASD, he officially diagnosed him with Aspergers. Hit us like another baseball bat.

In July 2007, Maybe the hub does have it. For me, I was not emotional about the whole package deal I got. I was in "next step" mode. Reading all I could read, googling everything autism and aspergers, starting this blog as a journey journal. Productive in education, but back and forth between acceptance and denial in its applications to our family.
This month we also applied for services for the current school year with the KCS system.

In August 2007, my first cry and entry into the "autism community." Preschool was starting and I was very nervous knowing what I knew. I met with directors, prepared documents, burned CDs for each of them for resources. Everyone was positive and optimistic that they would be able to accommodate him. But the experience was not much less than disastrous and chaotic.
This was also the month of our first ASA meeting where I met live people who are going through exactly what I am. Still unsure of what I believed in as far as theories and such, I still felt like an outsider.

In Sept 2007, we removed (by request) the Elder from the preschool, had him evaluated by the KCS system, attended an Autism 101 class, and got the resource of an online counselor who was willing to diagnose the Hub and also a live person (for me). We started in early September with the online person who after longs days of writing our responses to 45 question surveys (one for each of us) said that he met NONE of the criteria. SHOCK. And the start of my second-guessing EVERYTHING all over again. Is my son really Aspergers? What if it is just this...or that... and the hub is just this...or that....?
Going to the live person the last week of September, I found myself swaying toward the "I don't believe my hub has AS, he's just an insensitive jerk that NO ONE else sees except for me." I was so desperate to find an answer and just feel sane and validated for just one moment, I held nothing back. Her response was "whatever is going on, we can handle it." Well that was nice and positive. She is Super.

In October 2007 (hey wait that's this month - boy do the days drag...), we got an IEP for the Elder - yippee skippee, on the 2nd, and an official diagnosis of Aspergers for the Hub on the 3rd, and the first day at the Special Preschool on the 4th. I think it was the first normal week I've had in 16 months. Our military schedule is working, (with the exception of yesterday but there was no real reason to blog on it since I'm realizing (from Super Doc) that I have to be sole overseer and General for now until the Hub starts his therapy), my Hub is making an initiative to read a book (Attwood), and I'm taking things less personally (Q-TIP = Quit Taking it Personally).

So things are looking up for us since the Hub's diagnosis. At least now we know which direction to go in, now that the dizziness of the diagnosis roller coaster has died down and we are trying to get our life back into a balance. Motivation can be hard just from the mere mental exhaustion, but everyday is a new day, and every day I learn something new, meet someone new, someone new finds me, and even though this too shall not pass, I'm creating a new normal.

Just one question...when do I get me some drugs????

Going solo

I had an appt with the Psychologist today, just me without Terry. We had previously emailed her what we had sent to the first "psychologist" minus the questionnaires and the final report. If you recall, the online chick said he met NONE of the criteria for Aspergers. Ahem...

The current psychologist begins the session with, "These reek of Aspergers."
"Really? Because we didn't even give you everything that we gave to the other lady."

She was very professional and didn't say anything negative about the person, but just repeated, "These reek of Aspergers."

I'm slowly realizing how huge my situation is and how I truly am going to have to think completely differently. And then there is Ryan, Master NT, for whom I'll have to still remember the way I naturally parent. I can hardly keep their names straight, much less how to effectively parent which child in which manner!

But you know what, every time I think that I'm just going to sink into a hole and hang out there for a little while (or a long while, just depending...), I get a ray of sunshine (you know who you guys are - and I THANK YOU) as if to tell me, "It will be OK." "You are not alone." "People do care about your sanity."

I KNOW something good will come out of this. I have faith in that - "the Bible tells me so."
I guess I just have to wait and see how it fits into the master plan. Patience...ahh....a virtue....fine.

It is Official

So we finally took the plunge to see a (live and in-person) psychologist for us as a couple. I knew that I wanted to see a professional for my own sanity, and when we stumbled across an online counselor, Terry agreed to getting an official diagnosis. I thought it was a good approach because of Terry's processing time, I didn't want to waste a session of him going blank with, essentially, test anxiety. The online counselor was not a good experience and she basically said that Terry exhibited NO criteria of Aspergers (cue: mouth hanging open in shock). She basically took an initial write-up from me and Terry (individually) and the she each gave us a questionnaire. There were very few follow-up questions to clarify our answers so she really took them at face value which was not the smart thing to do in my opinion because Terry is much more "social" in writing than verbally (Have you seen his blog? He's quite witty.) and his writings aren't always representative of how he presents himself in person. It was kind of funny because the new lady we are seeing looked at us the same way as to say "say what?" This is how she presented her official diagnosis: "This smells like classic Aspergers." I like her. She's funny.

I loved the way she asked more questions to probe deeper into what we were saying. "Forget about what you think you're supposed to do, what is it that you initially want to do?" That is so key I think with Adults who have experienced the social training of Life or even of College like in Terry's case. It is also so sad for high functioning aspies like Terry to be over looked for, ahem, 36 years with no support because of their ability to "appear" typical when it truly is a daily struggle for him to just be in a world of other people.

What is our homework? Extreme, crazy structure in the household. The OCD in me is soooooo happy! The ADD in me is sooooooooooooooo frightened!

Terry was also tasked with reading the Attwood book and to make an appointment with a psychiatrist, bascially to get in the next available appointment (in 2-3 months) in the event he needs to see one.

What about Jenny?

I received a lot of emails and phone calls from friends and family regarding the Oprah show that featured two celebrities whose children have autism. Unfortunately I didn't watch the show. (frankly, I forget sometimes that there is television outside of PBS and Nick Jr.) But I did read the article at Oprah.com and here was one of my responses to an email:

I went to Oprah to read about this. It's hard to get something really useful from people whose children have Autistic Disorder because the "symptoms" are so different than Aspergers, yet so many are the same. I usually read about everything though. I have one blog that I keep up with and her 10 year old only says words and phrases at a time and even the number of phrases are limited. I just can't relate to that, but she does have great topics of discussion because she is a phd and writer for an online mag.

...The controversy with what Mccarthy advocates is on whether Autism is a disease or illness as opposed to a disorder, and they are trying to "heal" them. I think of it as "adaptation." Obviously it doesn't go away or Terry wouldn't still have issues. He may just be mild Aspergers or right outside of the spectrum, but his disabilities are real and it has been hard for me to not get frustrated with him, it's more frustration with myself and my patience. It's harder when it is an adult. But I think that Eric will be able "adapt" better when he is an adult just from the fact that he is growing up in a generation that is a lot more aware than ours.

To add to that, something I was discussing to someone in person, was that it isn't really fair to tell a child that he has been "cured" from autism. We have been told that there is no cure for Aspergers and I believe that. (I do believe that people with autistic disorder can improve their diagnosis to higher functioning) Why isn't it fair? because we have NO idea what is really going on in their head because they cannot communicate well. So if we tell them they are cured, and then they wonder why they feel rejected or like an outsider or frustrated because they don't know what to say in a new situation, that could lead to extreme things like depression, teen pregnancies, suicide, etc. often without any warning. However, if they know that they have autism then they have an explanation of why they are the way they are. The person still has a choice to either use it as an excuse or to use it as awareness to adapt to it.

Terry and I use little scripts. We always have and we would just crack up at each other every time we would "reenact" a skit of some sort. But now I know why we did it. Not just to be silly, but we were in fact communicating. Crazy.

We started the gluten-free diet about mid-June about 2 weeks before Eric's official diagnosis, and I so have to credit McCarthy for my being aware of this, but after I read her post on oprah.com I connected the fact that since we was on the diet he started to talk a lot more and form complete sentences. I think it was about 6 weeks into the diet that he started doing that. I might have to check out past blogs to know for sure. The other thing I noticed was affection. The first time I noticed it was about mid August when he came out of church (I can't rememer if it was choir or sunday school class) he ran towards me with open arms saying "mommy!" as if he was happy to see me. I had never really experienced that before and I was a little shocked and felt like a normal mom at the same time. I think he probably picked that up from Ryan who is very affectionate and huggy-kissy. But I can tell that Eric is trying to express his own feelings, he may be using someone else's method, but I believe that it is truly his own feelings. He has even improved in the "I love you" department. First, when we said I love you, he would say nothing. Then he would repeat us and say "love lou." Now, as reported by Terry at the end of the bedtime routine, he will respond with "I love lou, too, daddy" which tells me that he isn't just repeating our words but is directing them to Terry. (He still says "I love lou" to me. sniff. I'll keep you posted when he directs it to me)

I think that is what I think will be difficult in this journey of Aspergers, especially with the early intervention. The fact that he will learn to interact, communicate, etc with the typical children make it really difficult to see a disorder in him. If you haven't seen Mozart and the Whale, please do. It is really eye-opening to what Aspergers can look like in different people.

I mean if Terry made it through to adulthood without a clue, then I think Eric might have the same chances. But the bottom line is that I think it is so key that he understand his condition so that he can understand himself if he does have a meltdown which seemed to come from no where or if he does feel like he is the leading role in the production of Life and feeling like he is not living his own life, that he is different inside than what everyone perceives of him or if he can't express himself very well, to not give up, etc etc. It is MY job as his parent to raise him to live with integrity to why he was put on this earth and NOT to make excuses because of circumstances. Tall order - but I'm up for the challenge....I hope.

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.....

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?

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.

The Research for the Day

I had an overwhelming therapeutic need to post this excerpt from the following source about Aspie Adults (about 4/5th down the webpage): http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Asperger_syndrome_and_adults?open

Common issues for partners
An adult’s diagnosis of Asperger syndrome often tends to follow their child’s diagnosis of autism spectrum disorder. This ‘double whammy’ can be extremely distressing to the partner who has to cope simultaneously with both diagnoses. Counselling, or joining a support group where they can talk with other people who face the same challenges, can be helpful. Some common issues for partners include:

* Feeling overly responsible for their partner.
* Failure to have their own needs met by the relationship.
* Lack of emotional support from family members and friends who don’t fully understand or appreciate the extra strains placed on a relationship by Asperger syndrome.
* A sense of isolation, because the challenges of their relationship are different and not easily understood by others.
* Frustration, since problems in the relationship don’t seem to improve despite great efforts.
* Frequent wondering about whether or not to end the relationship.
* Difficulties in accepting that their partner won’t recover from Asperger syndrome.
* After accepting that their partner’s Asperger syndrome won’t get better, common emotions include guilt, despair and disappointment.

My intention for posting that is not to get sympathy. It was affirmation for me that I'm normal to feel the things they listed and that it is healthy for me to continue talking to people who have experience with AS (or just Terry and Eric's specific issues). I have found an overwhelming support here, as it is more prevalent that we think. I had never even heard of it before summer.

http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Asperger's_syndrome?OpenDocument
I thought this was a great concise explanation of AS in case you've not been able to read all of the links.

All of this is affirmation to me that Eric is normal (under the umbrella of SI and SPD at least) - that there is nothing seriously wrong with him (or me for that matter). I really began feeling like I was an inadequate parent and that no matter what I did I didn't have control over my kids. But every person that I have confided in here has been so supportive and given me resources and networking me with other moms who are going thru the same thing and given me exercises to do with Eric until he starts therapy again in the fall and what to look for and what to work on and what's important and what isn't a big deal etc etc. One mom and preschool teacher even suggested the gluten-free diet. Had never heard of it, then googled it and sure enough they are trying it with autistic kids. Well Eric isn't autistic, but we thought what the heck let's try it. We have a seen a huge difference in his ability to focus. Now he still is 4 so his focus ain't that great! But has definitely becoming more age appropriate.

Other great FREE articles to download are on http://www.superduperinc.com/handouts/handouts_allbynumber.asp
I wanted to link these so family could get an idea of how Eric has been getting help with in his therapy since January. Check these out: #110, 114, 119, 121, 130, 132, 133, 134
Disclaimer that I haven't read all of these in its entirety. I just skimmed and then downloaded for me to read later but I thought I would go ahead direct everyone to the links.

Re: #110
We have seen a great improvement. As a matter of fact on Monday, for the first time EVER, he asked me "Why?" I don't even remember what we were talking about (We were opening his birthday presents) but I was so excited and was praising him. I'm not sure if I ever answered his question though. ha ha. And then today we were putting together some train tracks and I was thinking about the design, and Eric asked me "What are you looking for?" I was sooo proud of him. His speech lady has been working on this (his WH questions) with him since March (the beginning) and I think he may have finally gotten it!! The true test will be the next time he asks Why but in a different scenario. He's gotten pretty good with asking Where - I think that was his first one. He's always said "What are you doing?" but that was from rote memory of me constantly asking him that-tee hee.

Today I was at a baby shower and I started talking to other parents of older kids about some information about kindergarten (because Dr A wants him to go next year versus holding him back a year). Overwhelming response that we should hold him back because boys are more immature. I have heard that and thought that was what we would do. Also have heard that with out a Pre-K class, the kindergarteners are very unprepared. So one brilliant mom said that many parents with bright children will send them to Pre-K to learn the social skills and then send them straight to 1st grade. So I'm going to talk to his dr about this. Anyhoo, I explained to this particular mom that I was afraid to throw him in Kindergarten next year, but his IQ was too high to keep him back which might lead to behaviorial issues. I caught myself saying that he had a learning disability, which in some respects is true - if you can't listen you can't learn (see handout #114) . But that got me thinking for those of you who love and adore Eric and see him as just a normal kid and nothing more - how is it different than an LD, say dyslexia? I have a friend who is dyslexic and I keep forgetting and I keep calling on her to read stuff aloud. But she has learned to cope sooo well that as long as she reads slowly (or has read it before) then it gives her time to rearrange the words. No one would ever know she has an LD, because she appears "normal." That is how I want people to see Eric. Yes we are darn proud of his IQ which by no means is normal, but I intend to help provide him with a normal social life and the ability to communicate effectively to the masses.

OK its late. Good night.

Terry Speaks

Thanks Terry for your insightful comments. It is nice for you to contribute to our understanding and I hope that you leave comments often. I know how hard you are working to make this work for us and to be a good father and I appreciate it so much.

I read in one article (no reference now but will try to find it-I might have already referenced it, let me know if I did and you read the link) that aspies are better at writing down their feelings than speaking them. It encourages aspie to keep a journal that they can refer back on to study themselves and their emotions. Even as his wife of 11 years, I don't always know what is going on inside. I used to joke that I would go to read his blog to learn about what's going on with him because he wrote there daily and I'd be lucky if we had even a conversation, and when we did, of course I was the one who started it. It really made me feel like a bad wife and friend. And even when the big D crossed my mind I would always think that no one would understand why I'm not happy, because no one knows how it is behind closed doors (except maybe for his mom since she raised him). They see the happy go lucky, witty and charming, smiley Terry. Not that that Terry doesn't exist, I just didn't see that Terry very often at home - even though I knew that that was the Terry he really wanted to be. I am truly happy for Terry (and me) that we are learning how to handle the communication gap. It has been liberating for both of us. We still have good days and bad days, but the good days lately have grossly outweighed the bad ones.