Find Out How to Get Support

OK I've got a bunch of modest friends. Kudos to you Marla for posting a comment!! You get a big fat mwah from me!!!! Pass it on with pride and love (don't take the easy way like I did...)

Elissa and I have many crossover readers but I want to post this here to get additional feedback. Hop over to Elissa's post and post your comment. I'm going to quote here here for my journaling purposes:

From Managing Autism - A Personal View:

I mentioned in a post a couple of days ago, that my recent search for help and advice with Jack had people asking me where we usually turn for help and assistance when things get tough or ‘challenging’ or when we just need to talk through stuff…..

A friend of mine spoke to me recently about the troubles that she was facing with people close to her - that they were insensitive to her and her child in relation to her child’s autism. She was becoming increasingly upset with the thoughtless remarks, and was at a loss as to what to do and how to approach the issue with these people… particularly when many of the insensitivities were displayed in public and she didn’t want to cause any problems between herself and these people…..

And I posted a while ago on a topic that many parents of children with autism face - that of being judged by others, and the grief of self judgement.

So all of this has had me thinking… when times are difficult and especially challenging with our children, when people are insensitive to our needs and our children’s needs, and when we’re going through the times of self-judgement and judgement from others - where do we go for support, and who do we find support from…?

… and then how do we deal with the unsupportive influences in our lives…?

I am very fortunate to have my parents who are very supportive of Jack’s needs and our needs as a family. I also rely heavily on my blogging friends for a support network of others who are facing similar things in their lives - and who are very generous with advice and support! I visit an online forum when I can, and I do have a couple of friends who I can call on for a ‘chat’ when things get tough and I need a friendly understanding face.

And of course, there are a couple of people close to us who really have no interest in recognising Jack’s Autism Spectrum Disorder, or maybe they do recognise it, but they just don’t stop to think that perhaps their thoughts and actions (or lack of thought and action) are hurtful and unsupportive…

But where else does the support come from?

Some of the professionals and therapists we have worked with over time have been incredibly supportive - both practically speaking and from an emotional aspect as well…

… but what do people do, and where do people go when they have little support around them?

… and how do people handle others around them who are totally insensitive… surely there must be a way to deal with the thoughtless remarks whilst still maintaining some sort of relationship with people.

I’d really love to hear people’s thoughts and ideas on this… for myself, for my friend, and for all of us…

… after all, we all need support.

I had a strong reaction to the following comments:

Marita Says:
"The other problem is one sister-in-law and her husband who can not understand and think I am over reacting and there is nothing wrong. I emailed all our family when Heidi got into Kalparrin Early Intervention to celebrate our great news. Problem SIL reply was “and this is good?”."

Casdok Says:
"As to insensitive remarks, you do grow a thick skin. But sometimes it isnt enough."

Marla Says:
"We have lost lots of friends and I would say that visually M does not appear to have that many difficulties, at first. That could be why many friends just don’t get it. Over time they don’t want to hear about it and it really upsets me when they don’t offer any supportive words or go on and on about every little achievement their children are making and then act bored when I talk about M.

But, complaining does not help the situation. I guess I have found it is easier to let friends go and distance from family that just does not get it. I don’t have the energy anymore to put up with dumb comments."

Lou Says:
"And now Zach is in a school where they are ALL geeks, all brilliant - all special. So he doesn’t stand out like a sore thumb anymore. He fits in. And he has blossomed and prospered. Of all of the issues and people he has encountered in his life, it has been his contemporaries who have caused him the most bother. And now that he is in an environment where his contemporaries are just as blissfully unaware of their surroundings as he is - they don’t look for the ‘oddball’, single him out, verbally, emotionally and physically abuse him - he feels safe to be himself."

And I just love Sheri's attitude that she has learned to develop. I can relate to her comment in nearly every way.

Click here to view all of the responses thus far. I've only read the first 6 as of right now, as that is all there is but I suspect there will be more because this is an issue that truly needs addressing. You may not have a child with ASD, but maybe ADHD or some special needs. Where do you get your support?

Sick but productive...

OK, I got my share of the bug... Getting over it as we speak but still haven't had anything to eat in over 24 hours. Almost 30 hours.

But the good news is that before I got sick sick yesterday I was able to get the TEIS referral for The Younger. The Teacher had coached me on what to say when I asked for the referral. Seeing that The Younger's fine motor skills are that of an 8 year old, she said that just asking for an OT evaluation wouldn't suffice, because he would pass the fine motor skills testing with flying colors. Instead she suggested I use words like desensitizing, and higher than normal anxiety, even using the word "daredevil." One thing that I thought to add on my own was the fact that he picks at his scabs and lips until they bleed. I got a good reaction out of them with that one. My final statement included something like, "His brother has Asperger's so we were told to lay low as he might be learning these behaviors but when I was seeing a different kind of sensory processing in him, and the increase in anxiety, I began to worry." Her immediate reaction was "Yes we can do the referral and you are absolutely doing the right thing."

That made me feel so good. I guess because I wasn't going to be a warrior about this but knew that if he could get into OT it would be great, but that if he didn't, it wouldn't be the end of the world, especially since we have The Super Doc and The Teacher to kind of give us advice along the way, not to mention the experience we have with The Elder. But to have someone else acknowledge that you are doing the right thing for your child and it involves getting him help (state funded help for that matter), it really is a pat on the back. It makes me grateful for not waiting because he will be 3 later this year and would be "too old" for TEIS. So how blessed am I to have people in my life who are bringing this to my attention before I missed the boat?? Thank goodness for people who are teaching me to be a warrior instead of succumbing to complacency. Mandolin Mom taught me a phrase today that I'm excited about using..."Well, this is unacceptable." Scares me a little, but I'll have to put on my big girl panties on one of these days because my boys need me to be a warrior for them. I won't always have The Teacher in my court...

Also yesterday before the major sickies I was able to write this letter:

February 4, 2008

To Whom it May Concern:

This is in response to the letter asking parental feedback regarding the upcoming year. One of the things that pleases me the most about the current program that my child is in, is that not only is he in a structured setting but he is also learning. He has made more progress in the last 4 months than he has with OT and ST alone. At the previous 4 preschools that he attended, the structure was much looser and the agenda was based on the typical children and left no room for dealing with sensory issues, leaving him misunderstood and being asked to leave each program. The program at KES has teachers and aides who not only understand how to handle the autism, but also is firm in what my child needs in order to "survive" kindergarten and dedicated to working with the parents to help in transitions.

My biggest fear for the upcoming year is that my only 3 options would be:

• Send him to Regular Ed Kindergarten at a very young age (DOB 7/08/03) without any resources.
• Send him to private PreK, the very same situation as the previous 4 schools who could not handle him.
• Keep him home which would lack the proper structure he needs to prepare him for Kindergarten.

My suggestion would be having a transition class that is structured just like Kindergarten. He would attend the same hours he would as if he were in Kindergarten, 5 days a week. The only way we know how he will handle the transition of kindergarten is to simulate it as closely as possible. This includes perhaps having a "reverse" inclusion setup where typical children would be in the classroom, but at an even ratio, or 2:1 ratio of Asperger children to typical children. I think doing it this way will ease the transition as my child relates to typical children at a slower pace, rather than bombarding him with 20 typical children at one time AND expecting him to perform his studies. Not only might that cause problems for the teacher staff, but might negatively affect the other children's learning, and negatively affect my son's self-esteem and confidence.

I really hope that this is seriously considered. As of right now, my child does not have an option that is in his best interest. I do not want to lose the progress that you all have worked so hard to make with him during this year. Please feel free to contact me if you need any more clarifications or additional input.

Thanks,

Lastly, I got a solo session with The Super Doc today. It was good. I guess I'll leave it at that. She does a good job of making me feel like I'm not a screw up!

First week back

Oh my goodness - The Elder has gotten Good marks across the board everyday this week. I'm trying not to get too excited because it always seems to come back and bite me in the butt when I do. But honestly he has been really communicating very well lately. He's very much so a rule boy. Yesterday he was telling me how he had "two rules." He never completely told me what they were but he was very "grown-up" as he was announcing them.

I have been using the "Use your words" technique for sometime, but now that he is actually using them, I have to really think about what words I give him to use. About 2 weeks ago I started using the phrase "Mommy will handle this" so that he has a default thing to say when he doesn't know what to say. For example if The Younger is "bahvering" The Elder and he doesn't know how to "redirect" him, instead of pushing him, I'm trying to coach him to say "Mommy will handle this" and then come get me. Today was the first time I actually heard him saying it.

"What happened here?"
"I just pushed him onto the thinking chair." (It's a chair that resembles the Blue's Clues thinking chair)
"Why did you do that?"
"He was ........ with the bottle." (I'm not sure what the verb was here. Something like squishing, I assumed he was bothering The Elder by making too much noise with the plastic water bottle while he was playing a video game.)
"It's OK for him to do that, but it's not OK for you to push him. If you don't like what he is doing, what words should you say?"
"Mommy.....Mommy...You can handle this."

This is all good and well until the day comes and I can't handle it. Anyone got a better suggestion of a phrase I ought to be using instead?

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The Younger is exhibiting some traits that are starting to get me concerned. The Elder's psychologist told me not to worry about him until he is 4 because he might be imitating his brother. Which does totally make sense, but he is so smart which is supposed to be a warning sign according to The Elder's OT from last year (who got the dx ball rolling).

Today he wanted to watch the Polar Express and he was matching up words on the screen with the words on the DVD case. He learns things very fast, not just visual things though. Like languages, he started learning Portuguese from The AP so fast that I started to think I perhaps I should start teaching him Tagalog - my parents native language. So he is learning, English, Spanish, Portuguese, and Tagalog all at the same time! And doing well at it. At least vocabulary. He knows most of his colors (but he doesn't distinguish between blue and sky blue though like The Elder did at his age), even pink (of course), and he knows his shapes - square, rectangle, circle, triangle, oval, star, heart, diamond, and octagon. He learns lyrics immediately and sings along to everything. He finishes my sentences when I recite the Lord's Prayer. He recognizes letters and numbers, and can count to 15 without help..higher with help. He's OCD and ADHD wrapped up in a cute little ball. Mood swings out the wazoo, but then again...He's 2 and a half. His memory is just amazing. But he is incredibly social. Gives the best bear hugs, pretends like a champ, is developmentally on track or above average. I can see a huge difference between him and The Elder at the same age (except for intelligence level).

So then I'm back to square one of not being concerned at all. I think I'm just afraid that it is going to sneak up on me and I want to be prepared. Again, it's that fear of getting ahead of myself vs. the fear of not being prepared. Never having a "typical" 2 year old, it's like have a first child again and I'm not really sure what to expect. What a weird feeling.

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Well, yesterday I missed my first day of the year of working on the book. =o(
I guess I'll make up for it over the weekend perhaps and have 2 sessions on one of the days.

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AND and and and...I'm a SOLD fan of mind-mapping. I wish I had invented it.

I'm dreaming of a...

That's what I did...dream...practically all Christmas. I got a little over-indulgent in the gluten department. I'm not 100% convinced that the "sleep until 10:30am" morning and the "5-hour nap" in the afternoon was a result of the 15 eclairs and cream puffs I had. Because if I were, then that would mean I would never be able to eat them ever again. I think I still had some ill effects from the half of a biscuit I ate at Bojangles, but NOT from the cream puffs. (read: denial)

Christmas Eve was pretty low-key. NOT. The kids were all over the place. The Bouncy balls were the best things ever to keep them active in the house without destroying something. We ate pretty late for each meal so talk about throwing our schedule off. I start to forget whether or not we have fed them. That is bad. very bad. As we speak, The Elder is yelling in the back of the van "I'm Hungry" and I look at the clock and it is 6:30pm! Yikes! They haven't eaten since 11:30 this morning! Well, we are going to stop at the next exit to eat and then I'll finish this post...

OK, we are dedicated Starbucks drinkers... We just went around our butt to find one. That calls for a Venti....

Family tradition usually has us opening gifts at midnight after Christmas Eve dinner. However, The 6yo With The No Tooth and The 8yo With The Bendy Glasses have a track record of not making it past 8pm on normal occasions so The Brother (their father) decided 10pm would be the new midnight. Opening presents was fun this year because The Elder understood that that is what you do on Christmas. However I couldn't get his focus off his 2nd present (racing cars) long enough for him to open the rest of his presents. So we kept them for the next day as rewards.

Because I was off in Dreamland most of Christmas day, The Elder lacked some serious structure. By the end of the day, he was not only hyper, but impulsive and aggressive. I was very frustrated because I knew it could have all been prevented had I been conscious, and also frustrated because I really didn't know what to tell The Cousins who were getting the brunt of it, because I don't think they know about his diagnosis so I didn't want to use it as an excuse. So as "discipline" I made The Elder bounce 10 laps around the ping pong table and he wasn't allowed to open a present that night. (We still have like 5 presents for them each to open!) Have you found yourself in this situtaion? And if so I'd like to hear how you handled it...or wish you had handled it.

Now, according to The Lola, Santa got stuck at the North Pole and wasn't able to deliver the presents on Christmas Eve so we didn't wake up to overflowing stockings Christmas morn. The Hub was disappointed because Santa usually brings us chocolate. Coincidently my parents have been abroad for the last month on a mission trip and was exempt from Christmas shopping beforehand. So Santa and The Lola struck up some plan to have her just take us all shopping instead to make up for both of their lack. So we went to the outlet mall today in Myrtle Beach to find some goodies.

Updated at 11:33pm (computer battery died in the car)
We actually went to Barnes and Nobles first because I wanted to get the book about organizing for the right brainers (I can't remember if I blogged about that or not, but The Brother and I were discussing it) and a much needed Starbucks fix. The Hub dropped me and The Lola off so we didn't have to drag the kids in there and she ran off to the bathroom and said she would catch up with me. In my quest to find this book, I came across the psychology shelf and, out of habit, stopped to browse. Driven to Distraction caught my eye, but I felt like the title was a little negative. Well, then I saw its sequel Delivered from Distraction. Much more positive title, so I picked it up instead. The first chapter is called "Read this if you can't read the whole book." Now THAT'S my kind of book! I scanned the other Adult ADHD topics when my mom came up behind me...

"Did you get your book already."
"Oh, no not yet, I got distracted."

My nonchalant, inadvertently ironic comment made me giggle. I knew right then I was going to buy that book!

Next Stop: Target. There are some wooden trains in the Hot Spot that The Kiddos went wild over. The Elder calls them "The Trains with No Face." I'll post pictures one day. We bought our Christmas New Year's Cards to be delivered sometime after we get The Kiddos Holiday Pictures made. Will probably take advantage of The Hub photographic talents this year and save on some moolah.

Finally we arrived at the Tanger Outlets. I had a goal to find new patent leather dress shoes. I went to every shoe store. Found the perfect pair (on sale too) at Nine West. However they didn't have my size. We got quite a few things for the kids and a few decoration for the house for next year (The Elder really wanted a star for the treetop next year, as opposed to the angel), but I walked away from our "Santa went AWOL" shopping spree with only the book. I looked at The Sister-In-Law and said, "So this is the mommy syndrome...all that shopping and nothing to show for it...I must be growing up."

We did have a nice trip to see my side of the family. It was great to see and spend time with my nephews. It was humbling to see how grown my niece is now that she is a college girl. It was nice to meet my sister's significant other. It was fulfilling to see The AP enjoy The Lola and The Tita's (my aunt) filipino cooking as it reminded her of Brazilian cuisine. I was thankful that The Brother and The Sister-In-Law joined us today, since I usually don't get to tell them good-bye. It was particularly uplifting to be sad to go. Usually within 24 hours I'm ready to haul tail out of dodge, but this year was different. I felt like it was time to go home sooner than I wanted. If I didn't have to work tomorrow, I'd probably would have convinced myself to stay an extra day.

We left about 3 hours later than we planned but still arrived in TN at a decent time. The Kiddos insisted on watching the Blues Clues Holiday DVD THE ENTIRE 8 HOUR DRIVE HOME. I bought them Polar Express (which they have been whining about all week to see) and we had to stop it 20 minutes into the movie because of The Younger's request. (The Elder was asleep. I imagine he would have argued this had he not been.) But even once he woke up, there was no switching movies. It was cute to hear The Younger sing "We just got a letter" and The Elder sing "Spin, Dreidel, Spin." I, personally, ran the juice out my computer catching up on blogs and then ran the juice out of my cell phone playing Spider Solitaire and Sodoku. Whew, it's nice to be home! I've dedicated myself to go back on the gfcr diet, limiting casein to cheese and only once a week and only outside of the home. I figured I'd feel less guilty if I gave myself some leeway. And....no more cream puffs.

If you haven't signed it yet...

SIGN THE ONLINE PETITION HERE

Click here to get background information regarding this horrible Ad Campaign. Rescue Me: The NYU Child Study Center’s Ransom Notes Ad Campaign is one of many post regarding this issue and includes many links to other people's point of views as well. This is NOT just for Autism but for other disorders that affect someone you know even if you don't know that you do because so many are hidden.

I wanted to include a special link to Maternal Instincts...Flying By the Seat of My Pants: In the Blink of An Eye, because I've been wanting to blog about this for sometime but couldn't really get my thoughts together about it with the crazy busy week, and Niksmom tends to always give me perspective when I read her posts and watch her videos of the love and joy and triumph in her family. Down days are obvious and inevitable with any disorder (much more with multiple issues). Shoot, down days are inevitable period! You don't have to add neurological differences to expect that! But what the public doesn't see are the daily victories we as the parents see in every moment.

Today The Elder accidentally slammed the front door on his brother's finger. I heard The Younger scream (you know the one - the "I'm not kidding, I'm really in terrible pain" scream) and when I got to the door, The Elder was holding him. He didn't know what to say, but he knew what to do. He had a neutral look on his face and when I asked what had happened, The Elder said matter of factly,

"I just cwosed the door on brother's hand."
"Did you say you were sorry?"
"No, I just hug him."
"That was perfect and I bet you made him feel better." (as The Younger was screaming his head off)

If you don't have a child with autism, maybe the matter-of-fact, unfeeling, robotic tone of voice may not be good enough. Maybe he must apologize and "mean it" before it is acceptable. If you have a child who has autism, you know what a big deal that is. How many times before today did he hurt his brother and not even acknowledge it? Maybe he would just walk or run away ranting "di di di di di" or plugging his ears at the sound of the screams and then hit The Younger over and over again because it was hurting his ears and hitting was the only way he thought he could get him to stop crying.

He is amazing. He has to learn how to act and how to feel where others have instinct and intuition for that. He has to memorize consequences for his actions where others have common sense for that. He is more polite than a lot of "typical" 4 year olds I know, and once you get it into his routine, he is more consistent and accurate than a lot of "typical" adults I know. He appears to be "normal" when he has his "game on" because he is being trained now to do and know the things through "early intervention" that other parents take for granted that their children will just learn one day, which maybe they will or maybe they won't.

But if your child doesn't receive "early intervention" does that mean these Ransom Notes are fingered at you to get your child out of bondage? No! These Ransom Notes drive a wedge between the child and the rest of the world. They scream out to the child "You are different and you need help and you need help now or you will be helpless because it is only going to get worse." That is what I feel like they say. What kind of awareness are they trying to spread? Are we really in a minority, especially when you consider the loved ones who have "second hand autism/adhd/depression/etc." Do our families need to be fixed or do others need to be more tolerant/accepting/respectful? The Hub is 36 years old and found out 2 months ago that he is autistic. Does that make him *poof* a victim? Was he robbed of a glorious life because he is autistic? No! He has two beautiful children and a good education and job (and me, of course) - a good life. No he's not a victim...he's a VICTOR, and so is The Elder and so is YOUR CHILD. They work harder on a daily basis to merely exist in this world of normal expectations than us "lazy" neurotypicals who can do it naturally.

For the people behind this campaign who might think our life with autism is so horrible and unfulfilling, I beg to differ. I gush with pride when The Elder says, "I'm not talking to you, I'm talking to Daddy" (even if he is just asking to turn on the radio), when he eats everything on his plate, when he uses a fork or spoon, when he sleeps with socks on his hands because he has a hangnail, when he gets dressed/undressed by himself, when he doesn't cover his ears in the public bathrooms, when he poops, when he names all of the Thomas trains and accessories, when he corrects me ("Mommy, you missed the turn."), when he pretends to be "Dog #2," when he pretends "incorrectly" (serving me pretend food/drink by covering my mouth as if to kidnap me), when he touches something gooey, when I say OW and he said, "Are you OK, Mommy?" all the while never moving his gaze away from the computer, I get teary when I hear "I love you" even if its one of the scripts. This might sound like an ordinary life to them, but to us, it is extraordinary!

Tis the season for "making" "cookies"

Ok, so I don't get the Martha Stewart award when it comes to baking, or cooking, or much in the kitchen for that matter unless there are directions on the box for how long I need to microwave it. Well, I can do magic in the crockpot. Of course the only thing I need to do it put the stuff in there and then turn it on. It's not that I CAN'T cook (with guidelines), I just don't enjoy it as much as The Hub, therefore, he and the microwave takes turns providing nutritional means for us. Well, I have 2 cookie stories for you. I've posted all of the pictures in the slideshow on the sidebar.

Sugar Cookies...

Good ole fashion gfcf sugar cookies. One of The Elder's classmate's mom send us some gfcf flours and the recipe to try. First, I never make cookies from scratch and if I do, The Hub is there to supervise and then eventually take over. The Gma was coming over so I thought I was safe. Nope. That made it worse because now I'm feeling the pressure (where do you think The Hub got his baking talent?), but kindly enough I was not chastised for pitching the rolling pin and flattening out the dough with my hands. The Gma brought us a large assortment of cookie cutters to use. I let them pick out which ones they wanted to use, so among the Christmas Trees and ornament, we also had a Christmas Question Mark, a Christmas Hand and Foot, a Christmas "L," and a Christmas "Z." Oh, and the Christmas "X" which was accidentally stretched out to look like a Cross.Ten points to the first person who correctly identifies the mass to the left of the foot.

These were ALL the sugar cookies we made. All Ten of them. The Elder did well with the sensory portion. He hated touching the butter, but once we started cutting the shapes he had a lot of fun squishing and flattening the dough. Maybe a little too much...I bit into a cookie that had dog hairs in it. ho hum. We now only have enough batter left to make about 3 cookies. It was some yummy cookie dough - and a LOT easier to do it that way.

Gingerbread Cookfins...

In this post, we were preparing for upcoming food art projects. Fast forward 2 weeks later and we still haven't done the banana pops and we finally got around to the Gingerbread Train. Well, attempting to make it. In the interim we lost the box to the cookie mix. This is disastrous to me (see first paragraph). We looked through the recycle box but we cannot find that one. I went online to this particular company's website and lo and behold they can a recipe link on their site! Woo hoo! With much confidence, I start rattling off the instructions from the computer to The Hub. Still being drugged from his procedure (at least that is the excuse I'm using), he questions the instructions but listens to me anyway.

"Really? Two eggs?"
"That's what it says."
"Are you sure we use that much oil?"
I point to the computer screen.
"Ok."

Well, it was not quite the consistency we were hoping for.Yes, that would be the kids spooning the dough into the cookie mold. The Elder was not too excited about the drippiness of the cookie dough. It was not what he expected (or any of us for that matter). We had to get him to pose for this picture. I think I got 2-3 shots of that ONE scoop he participated in before hanging out on the yoga mat.

Needless to say, the trains didn't turn out. We couldn't even get the cooked matter out of the mold in one piece. They tasted pretty darn good though. Since we were in charge of refreshments at Sunday School this morning, we used the rest of the dough/batter for mini-muffins. They got hard pretty fast, so they were firm like a cookie, but airy like a muffin. We got lots of compliments on them, despite my lame attempt to explain to them exactly what they were. One of my friends said,

"They're Cookfins!"

So there, a new tradition? Try it! All the cool kids are doing it.

Trip to the Doc

This was actually a well-check up for The Elder for his 4th year of existence. I really hadn't expected it to take as long as it did but The Younger came too and missed a nap because of it.

This was the first time The Elder had been to the pediatrician since his diagnosis. It didn't occur to me until we had to fill out the PDQ form. This was the first time that he struggled with the questionnaire. We cheated and answered all of the questions (instead of stopping at 3 no's). The ones he got Yeses to were all non-verbal questions like, "which one moos?" "which is red?" "which is longer?" which he answered correctly without much thought. The ones he got Nos to were all motor skills and language questions like copying a circle or plus sign, drawing a person, hopping on one foot, balancing on one foot, "what do you do when it's cold?" "what is a chair?" "what is a pencil?" There were more of the latter and he hit 3 no's pretty soon. I was devastated at the black and white of his abilities.

When we saw The Doctor, he was fascinated at his diagnosis (evidently they haven't received the report from the psychologist's office yet) and asked a ton of questions. These were the very same questions that I used to get really defensive about when other people asked them. But since he's been going to his special class, I have much more confidence in what he is and is not capable of doing and which ones are significant and which are not, and the significant ones don't seem like such a huge mountain anymore. A blip, if I may steal vocabulary from Kristen, that needs special attention for now, but will get better after an inconvenience. The Doctor was there long enough to witness their chaotic, no-nap behavior The Elder's speech limitations and recognized where he was using scripts and when he was not. I was satisfied with that. I also told him that he could read.

"What book can you read all by yourself?"
"Max and Ruby's ABC Book."

The Doctor says, "Oh is he recognizing words now?"
So I grab a piece of paper of recommended books that they just gave me and gave it to The Elder. "What does this say?"

"The Little Engine That Could" (OK that was kinda cheating as we have like 4 versions of that)
"Keep Going..."
"Mittens....Marshmallows! Oh I like marshmallows! I hold the bag."
(That's his job when we make s'mores though he doesn't eat them. He prefers the marshmallows in the "raw." Must be a sensory aversion to gooey. We no longer indulge ourselves in s'mores since it is the opposite of gfcf.)

So it was an interesting trip to the Doc. Didn't have to ask for a probiotic for The Younger as he was recovering, see The Hub's post. But The Elder did have to get a shot and I feel terribly guilty. I didn't know he was due and I struggled with "do I tell him or do I just let them do it?" If the former he may flail wildy in opposition and The Nurse wouldn't be able to approach him. If the latter he may flail wildly in opposition when The Nurse approached him with the needle. Well, I did the latter. I don't know if it was the right decision or not, but he got nicked a little when he jerked (he was laying there so willingly and innocently). He cried for a LONG time. It wasn't a "I'm in pain" cry, it was a "My feelings are hurt" cry. At one point he even sobbed, "I can't stop crying." My heart breaks everytime I replay that in my head. I know he will remember the next time we go which will be his kindergarten check, hopefully not that is.

Well, it has a good ending. They both fell asleep on the way home and I had 2 deliveries to make, so it was a nice resting period for a no-nap day.

Occupational Gymnastics

I visited my friend's girls' gymnastics class yesterday to check it out. The Kiddos were both in gymnastics starting a year ago for about 6 months. I have mixed feelings about our experience then. First, I was the only parent at Mommy and Me class with 2 kids. One that was exhibiting avoidance behaviors and one that felt like he needed to act like his big brother. Second, I think the coach contributed massively to The Elder's first evaluation leading to a misdiagnosis. Well, an UNdiagnosis, which is worse. What really sucked is that I like her and she handled both of them very well and I trusted her because she has private lessons with children with autism and even mentioned to me how The Elder's actions resembled those students of hers. But when we "graduated" to the preschooler class (without Mommies) he did a 180 in the behavior department, which the finger was pointed at me (which is why the psych suggested a parenting therapist for me - pffft!). Never mind that he was in a class with his brother and other children of that age before, and then switched to a class with 4 year olds (The Elder was 3 at the time). Never mind that it was a LOT more structured and not a "free play" session like it was with the toddlers. No, it's my parenting. (But I'm not bitter.)

I digress...

So as I was saying, I went to observe this class and was really impressed with it. The other gym was a competitive gym for gymnastics and cheerleading. They had 2-3 classes going on at the same time in a HUGE open gym (not overstimulating at all - pffft). But this place was a cozy gym with smaller equipment and classical music playing in the background. Very structured and the instructor works with a variety of special needs children. Her class reminded me more of The Elder's occupational therapy sessions than what he was doing in gymnastics. For example, they went from station to station and eventually built up to an obstacle course of 3 stations. Well, that would work on his ability to follow more than 2 directives in a series. One station was the balance beam (vestibular therapy), then it was donkey kicks with a trampoline and they had to recite a letter during each kick which she had laid out for them (lots of good things from that - kinesthetic learning, coordination, um, what else?), then the last station was a low beam where they had to pick up "ice cream" and velcro them on the sides of the beam in different pre-set locations, and then go back and get them and put them back in the "ice cream" bucket. As you can see, I can see this being very very good for The Elder.

But as always, fees are always an issue. She is much less expensive than the other gym so that is a plus, especially for what you get. She is also cheaper per class than our co-pay was when he was having OT. Next Thursday we have a meeting at The Elder's school to discuss the results of his OT evaluation. It is so obvious that he needs it, but I still have that fear that they aren't going to grant him the services. At least I have another option if it turns out he has been "performing" well for the therapist at school.

I wonder if gymnastics is a tax deduction....

Random Thoughts

OK, I was inspired to have a discussion with myself so where else would I turn but to my blog. When we first found out about the prospect of a diagnosis for The Elder (and subsequently The Hub), I can frankly say I was clueless with a capital clueless about the autism spectrum. I was not a blogosopher and I didn't watch TV other than PBS, Playhouse Disney, or Nick Jr (come to think of it, the latter is still true. Actually now we don't watch any TV because we disconnected the cable - just the wire from the wall) so I wasn't aware of all the Autism Awareness things that are so prevalent in the media. The only experience I really had until that point was my nsd's son (and only through stories, not because I've met him) and 2 of my neighbor's friends and again only through hearsay at a later time because at the time when I met their children, they didn't say, "Meet my child, he's autistic." So when I did find out later that their children were on the spectrum I was surprised, I guess because of my then preconceived notions of what autism is. I was even more surprised to learn less than a year later that I have been living with autism in my home for 11 years and hard-core the last 4 years.

So where am I going with this? (I'm asking myself that...oh yeah, I remember now...) I had a really hard time in the beginning of my research of accepting that it is truly Aspergers, and then of understanding exactly what Aspergers is and what it meant to be on the Autism spectrum and what the difference was or even if there was one. I went through a phase where I didn't feel like I couldn't relate to my friends with neurotypical children of the same age as The Elder, but I also felt like I couldn't relate to the parents at the ASA meetings, and I didn't really know how to relate to my girlfriends and their spouses/spices. It's like I heard scenarios and had to stop and think, "does that apply to me and my situation? can I really give an opinion?"

When I finally came to terms to the fact that Autism will always be a part of our lives, it felt so terribly awkward to say that Autism will always be a part of our lives. And though I did say it because I knew it was true according to textbooks, there was always a feeling of uneasiness. I don't think it was on MY part and MY acceptance. I think it was a self-imposed feeling based on what I thought other people thought and THEIR acceptance of it. I have had so many people look at The Elder at first glance (even special educators) and question his diagnosis. And we don't really tell anyone (other than in the freedom of blogging) about The Hub's diagnosis, because they both do appear so typical and at those times, I, not wanting to make a mountain out of a molehill, immediately start to question everything myself, even though, textbooks aside, I know in the very core of my being that the diagnoses is the link to every issue we've ever had as a family and couple, therefore also the link to the solutions. So I am eternally grateful for their diagnoses because I cannot say where we would be without it.

This random self-discussion was spawned from this post at Asperger Square 8, and a post that she links to at NTs are Weird about prejudice of HFA/LFA, and then JER's post about Billy the Kid. And I think my post was materialized from a fear. All I know is what I know and have experienced thus far, and because I know very few people who have children with Aspergers between the ages of 4 and 36, I don't know what to expect for The Elder in school years, adolescence, college. And even if I did know other people, doesn't mean it will apply to us, huh? My biggest fear is that I'm getting ahead of myself. My second biggest fear is that I'm not planning ahead. What if I won't fight for something because I don't even know that he needs it? Talk about being hidden! Sometimes I shock myself when I have intuition, but I have been discovering it more lately. I guess I just need to give myself more credit than I do.

Sorry if this was hard to follow my train of thought here. Just had a journaling moment...

The NEW Paint

The Hub and I downloaded the Sketchup to our respective computers that night I discovered it (the name cracks me up. I keep thinking "you want Smustard and Sketchup on that?"...I digress) and we were both having fun playing around with it. It is quite advanced for a 4 year old (and 30-somethings as well), but I knew that he would have fun just clicking and making shapes because he loves the Paint program that comes with Windows. He calls this one the NEW Paint.

When he got off the bus, I gave him lunch. It was a much more difficult day yesterday, must have been because I sent a note to his teacher that her strategies were working. (I bet he secretly read that beforehand and decided that he would take care of that!) The day was filled with flying food, disrobing in the kitchen, and peeing on the floor. Sigh. Seems like the moment I let my guard down (even in excitement for him to get to try a new computer program) I get reminded to keep it up. I know, I know. I'm the mom and that is my duty to see things coming before the rage stage, right? I gotta get used to that whole paying attention thing. I just wish it didn't take urine for me to remember that.

Anyhoo, one of his very very best friends was coming to visit (which might have been a source of the episode) and he was so excited. Unfortunately it was going to be another hour before he arrived. I cannot in all fairness make him wait a whole hour. Well I had no choice, but I had a plan!!! Sketchup for dessert!

I told him I wanted to show him something on the computer. He got a little frustrated with the whole 3d perspective concept, but then again he was frustrated with working a mouse the first time he was on the computer (he kept touching the screen like he would on his L-Max). He loved the little man that comes standard when you start a new project. There is a horizon which helps you determine which way is up. He thought it was funny to make the man stand on his head. Anyway, I told him to make sure he saved it because I wanted to see it when he was done.

When I came back later he was playing Nick Jr games. I asked him if he was finished with his "house." "Yes" "Can I see it?" "Shore." (That's an echolalic moment he got from his Speech Therapist back in May! It is so cute to hear him still say it.) So we opened the program back up and I looked at his project. Now when I left him, there were a LOT of "buildings and pipes" because I was showing him what each tool did. Now it just showed one very squiggly line and no man.

"What happened to all the buildings?"
"Because I just like this tool. It works. Just like that. See?"

The tool? The eraser!

So you asked yourself, what can I do?

Karen at BEYOND Understanding (thanks for stopping by!) did a truly amazing thing and put together this post. Trust me, you want to read it. Because they are quotes from "moms in the field" you can actually hear their exhaustion, pain, and frustration.

From there, I found this Beautiful post from Ginger. Another must read. She has an interesting theory, an amazing faith, and a guide for friends and families to help out their loved one with autism. This brought tears to my eyes.

Since I've given a reading assignment, I'll keep this one short.

Reclaiming Control

One of the problems that teacher explained and Super Doc confirmed is that we give Eric too many choices. So one of the strategies is to take control away from him which countered some parenting books I had read. But their explanation made it make more sense. We were not doing him any favors by making him believe that he has total control. Even though the choices would only lead to the behavior or answer that I wanted, he still (in his little 4yo mind) believes that he "won." He is expected to honor my decisions, respect adults, and learn to wait and earn and still not always get what he wants. Sounds realistic and smart. She said that is true for any child and is not autism related which relieved me because I can't stand having to stop and think which child I am dealing with and which strategy I need to use. Besides, Ryan is a much bigger control freak than Eric. So I actually have used more of the tips on the Younger!! And guess what? They worked!

They also worked on Eric and it was great to have power again. That sense of helplessness of not knowing what to do when he does this or does that is subsiding. Using the same jargon that Teacher uses really is effective. I mean I said, "No that's not right, Try Again" and he looked at me kinda puzzled as if I was supposed to morph into his teacher and he was waiting for it. And when I repeated the direction, he did it. Cool.

She also gave me permission to not be too strict with the "military" schedule (though with the Hub we still have to be pretty checklisty in 15-minute intervals). For example, just because the routine is to eat Lunch, it doesn't have to be at 12:16pm. We were trying to feed him at the "normal" lunch hour with so much resistance. He wouldn't sit still or sit up, he wouldn't feed himself, he would put the food in his cheek and chew it so slowly like cud or something. It would take forever for him to finish. Teacher said, that he really is getting 2 directions when we say "Sit down and eat." And if he doesn't sit down, then he doesn't eat. Hmmmmm. She said if he is hungry then he will sit down and eat. So today I asked him if he was hungry when he got off the bus (or rather I carried him off because he fell asleep again) and he said no. I said ok I'll ask you again in an hour, but if you don't eat then, you cannot eat until dinner because I want you to have an appetite. I fell asleep on the couch next to him and woke up to him running into the kitchen "stealing" a juice box. Which was fine actually because I originally thought it was a lollipop that he got from his halloween box. I said, "you can have this, but sit at the table and I'll get your lunch." He did it on the first request. Then he says, "I want a sandwich - just like Todd has." First of all I'm thinking Who's Todd? Then I'm thinking, Eric hates sandwiches - too many things touching. But I (with much power and control) say to him, "That is a good idea for another day, but today you are having spaghetti." And there was a sweet sound after that. Silence. No "Why?" No avoidant whining. Not a sound. I gave him his plate, a fork, and put the straw in his juice box and then he did a wonderful thing. He ate. Not only did he eat, but he fed himself. Not only did he feed himself (with minimal food spillage), but he ate in a pretty timely fashion without his cud technique. He didn't finish, but I think his portions are too big anyway. When he started getting distracted, I asked him 2 times if he was finished and 2 times he said yes. Then I said I was going to put his food away and he said OK. If he was really not hungry anymore, he would have not wanted me to put it away.

Was it really that simple? An hour of TV (in which I got a nap!) saved us from a struggle at eating time. Geez. He was totally cooperative.

Something entertaining Teacher mentioned was how children with Aspergers do not like to stop something in the middle of it (game, activity, TV show, etc). He has to have closure. To not have an end is like cutting off his arm - it is not complete and creates stress and anxiety and meltdowns. She said if I were to bury his hands in the sand, he would freak out because he would think his hands disappeared. What was fascinating about that was just earlier this week I was wearing a frumpy sweatshirt and because I was cold, I had my hands tucked in to my sleeves and he totally f.r.e.a.k.e.d. o.u.t. Now I know why! She also suggested that that might have something to do with his aversion to buttons (er, buttonholes) and rivets in his clothing, but it was too early for her to tell. But I'm sure Terry will be devising cruel and unusual effective tricks treatments to poke fun of desensitize his fear for entertainment purposes.

The wheels on the bus go...zzzzzzzzzzzzz

School is back in session after the fall break and Eric started riding the bus home this week. It was a weird transition for me. At 10:30 I felt like I needed to be leaving to go get him and then the agony of waiting for the bus to arrive was torment. I spoke with the bus driver late last week just to confirm everything and she quoted an ETA of about 11:35am. Now I understand that everyday is different because not every child is full time like Eric is. Even the little girl in the neighborhood only goes Mon and Wed. But at 11:45 I started to panic. I mean, surely someone would have called me if he was still at the school waiting for me to pick him up, or if the bus was late leaving, or whatever. I sat there with my phone in one hand and the bus drivers number in the other, staring out the window. I hear a "noise" that sounded very bus-like and I expected a yellow thing to round the corner, but it was the lawn people instead. So at 11:50 I broke down and called her. I didn't really know what to say: this is a crazy, panicky mom who's freaking out about inadvertently abandoning her son?

"Hi, this is Eric's Mom (where is my son????). I was expecting him around 11:30, is everything alright?"

I think I sounded calm, I'll have to ask Cris to verify that. They were about 10 minutes away. She said she had a new student to drop off. She seems very nice. Eric was zonked out. I had to board the bus and unbuckle him and carry him inside. It was a little sad that he missed his first bus ride. He did have a full weekend of Halloween events, and I'm sure the extra sugar had nothing to do with it either. =o) Oh and they accidentally gave him animal cookies in Sunday School - of the gluten variety. I'll have to remember to pack special snacks for church.

Today was the second day and he was awake and actually came out himself after the driver unbuckled him. I think he was very happy and feeling like a "big boy."

Backtracking to this weekend, church was a great experience. We started going to the early service to stay aligned with the military schedule. We've been parking in the back and taking the back door to the gym (which bypasses the nursery and classrooms) and both of them stayed for the entire service for the first time! Terry did have to take them to the bathroom twice because (well, Eric had to pee the first time, and I was afraid that Ryan would pitch a fit to not be included so I sent him as well) Ryan was getting upset because Eric was taking his "papel." Which he wasn't, but Ryan decided to throw things anyway, loudly declaring "mine, mine, mine". He hauled back to throw his (full) sippy cup and you could feel the panic between me and Terry as we look forward to 2 rows of several silver-haired couples. That thing could easily cause a concussion, especially with his larger than life strength. We are trying to de-cup him and that is making the tantrum worse (during the sermon) so we both let go and stopped trying and just sort of hovered our arms around him in ready-mode anticipating the launch. Right when I relaxed thinking he had changed his mind (luckily Terry stayed uptight about it), he threw the cup and Terry tipped it so it didn't land on a head, but it did land on the empty metal seat in front of us and made a beautiful crashing sound (during the sermon) that seems to forever echo in the gym (during the sermon). So I sent them all to the bathroom (which is still in the gym). Sat there alone waiting for my heart to slow down, repeating "I don't need anyone's approval but God's," then trying to get something out of the message (which was the Success Quote). BUT it truly was a great experience...it was the first time we didn't have to take them to the nursery in the middle of the service. Next week we will try to bring more things to occupy them. Eric did fabulous. I prepped him before the prayer to be quiet, he didn't cover his ears during the songs, he didn't even complain about being in there (as opposed to playing with the toys in the nursery). I wonder if the casein removal has anything to do with this.

Also, Newsflash, Eric rode a horse BY HIMSELF! Well, there was a lady walking the horse around in a circle but he was solo on its back. Ryan wouldn't even consider it until I got on first. I guess he thought it would be safer, however, he didn't hold on to the saddle the whole time! He has also worn his Halloween costume EVERYDAY since Sunday when he donned it on for the first time for the church's trunk or treat event. Do I really need to tell you what Eric was dressed as?

Pictures to come....

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.

What's all the talk?

Today was a fun day with the boys. I again got to spend pretty much the whole day with them and it is just amazing how well they are talking. I have noticed that Ryan has taught Eric a lot of phrases (and Eric has taught Ryan a lot of behaviors, hmmmm...) and it is so cute to hear the Elder echo the Younger.

Some of the things that have sunk in this week for Eric. To ask to use the computer. Wow, I never thought I'd see the day that would happen without me having to duck to avoid a shoe, or spoon, or whatever he could get his hands on at the moment, when I would have to say no. Or quickly remove the laptop from in front of him (or vice-versa) to keep him from beating the keyboard to death. I mean to hear "mommy, caniplay on lour computer please?" wants me to let him use it every time he asks and so far I have. He does have his own logon name on my laptop, so he knows he has to "Switch User" and get to his screen before he can play (which he can do independently). He used to have a Thomas Wallpaper but has moved over to Curious George and on his 2nd CG scene since I showed him how to change the wallpaper that one time. He also has a bunch of Internet Explorer links (which is how I know he is on his screen in a quick glance because I use Firefox) on his desktop that only HE knows where they link to, because to the layman, the links look like they link to some site called "lksjdh ;uh;fjzsdj ohg;oshdogi," ";shtuwaotuSDjf;o'rg" and ";ish;oahrjgJ dng;ahr'goi." plus some other sites too that speak a similar language.

Well, today our internet is down so I was planning on using my broadband card, but in an attempt to stake claim to my computer I told him it was down, and he proceeded to hover over the network icon in the systray with the mouse, saying, "No, we have 5 bars!" He was ok with playing Purble Place for a while which is on my hard drive.

During that, the Younger awakens from his nap and comes running to me with arms up, saying, "Hold you." So I pick him up so he can he what Eric is playing on the computer. "Sit down stead." So I let him share the barstool with his brother. When Eric finished and won his game, I cheered for him. Ryan then put his right arm around Eric's shoulders and his left hand on Eric's left arm and gave him a squeeze and said,"Good job, eh-kick!" just like a proud dad would do to his graduating son. Of course this is also the same kid that 10 minutes later when we put Little Einsteins in the DVD player tell me to "Go away" as I go to kiss him good-bye. Hmmmm.. where'd he learn that from, eh-kick?

We are trying to potty training Ryan (not very hard as he is still in diapers - he hates trainers). But every night after tubtime we let him run around nakey until he pees (yes, our carpet is sad). And then we tell him that feeling is pee pee and when he feels that he needs to sit on his potty. Last night he was in our room and ran ALL the way to his room (which isn't far but when your legs are only 12 inches long I guess it is) and sat on the potty without prompting and he made pee pee!!!

Because I've been spending a lot of time with the boys lately, Ryan has gotten a little clingier than normal. Tonight he used his body as a barricade to my car and wouldn't let me get in and I was already like 5 minutes late for a meeting. And when I did get in he tried to open the back seat door. When I pull out of the garage waving to him, he was giving me the "fake pout." Cris and I each had to cover our mouths to laugh. It's funny how I don't get too wound up about this separation anxiety. I guess because Eric never had it, and I had lived through the stress of it vicariously through the other preschool moms whose children in Eric's class were screaming death cries when they got dropped off. And then again learned the lesson right along with them that they are just fine. (I think I cried more because Eric didn't cry when I dropped him off)

Anyhoo, the meeting was canceled so I came home in less than a half hour and I thought I would surprise him. They were both in the tub and when I got there they became wired. We let Ryan do the nakey dance (no pictures were taken to protect the embarrassment at his future wedding reception) and they were running up and down the halls getting us "food." TWICE Ryan stopped what he was doing to run and sit on the potty and TWICE he would look up at me and say, "s'not working" (stage fright I assume). Shortly after the second try, he peed on the floor. He was very upset about this and started rolling on the floor, saying "I'm sleepy." I mentioned to Cris how it is so odd to hear him talk about his feelings because Eric never told us when he was tired or hungry or thirsty or happy or whatever (at least accurately). But, again, Eric has learned a lot from his baby brother. Like how to pretend play at least with the "serving us food" game. It's cute because Eric's play is a cross between what he sees/hears Ryan do when he is pretending and what he sees/hears us (Me, Terry, & Cris) say when we are actually serving him food.

"Mommy, what do you want? Orange juice or apple juice?"
"Orange Juice"
"That's a good ideeee."
Then he puts his hand tightly over my mouth (as if he is trying keep me from talking) and makes drinking noises.

My boys....growing up...

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.