Now for that list...

I thought I would go ahead and knock out the quotables I need to journal about...

"We are going to Lolo and Lola's house this weekend."
"You mean the big house that is far far away?"
(My parents live in SC which is an 8 hour drive. This was the 3rd time we have driven there since Christmas, including Christmas. Last time he said, "I fink Lola's house is a very long time." So his syntax has improved in just one month!)

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Valentine's Day and the case of the crabby patty
Picture speak louder than words so check out the web album. I did finally find the missing crabby patty...it was in my PJ's pocket! Hahahahaha...
BTW, just in case Kara reads this, since it takes FOREVER for us to get together, there is a Valentine here waiting for Joshua and Mrs. Lovett. His choice when I asked, "Who else would you like to send a Valentine to?" Isn't that sweet. The other sweet thing is when he was picking out Joshua's Valentine, he choose the one that said "Best Friends." Double sweet!!

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While I'm on the same subject...
The Kiddos have rekindled my love for Veggie Tales. I really thought that The Elder would enjoy the music (silly songs) but I never really could get the regular episodes to hold his attention. Well, The Younger fell in LOVE with a Veggie Tales CD-Rom that The 6yo With No Tooth The Cousin formerly known as The 6yo With No Tooth, so when I went to Sam's Club I saw a double feature Silly Songs Set. They both have worn them out. The Elder has his favorite which "I can be your friend." He literally played it over and over again....practically the entire 8 hour drive home, and then again once we were home. He sang it for everyone. Then he looks at me and says,

"Gotta go to Joshua's house and sing this song?"

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We celebrated the birthday of The Cousin formerly known as The 8yo with The Bendy Glasses The 9yo with The Bendy Glasses last weekend while we were in SC and truly had a good time. The SIL was very respectful of our gfcf diet and made sure we all had something we could eat. See The Brother's nerdy recap of the event. However, birthday cake is birthday cake and it is really hard to make a tasty gfcf birthday cake so we were building up the stamina for the approaching time that we would have to tell The Elder that he couldn't have cake.

When the announcement was made that the cake was ready, The Elder came up to me very calmly and said, "Do I get cake?"

I was so proud of him for, first, being aware that he does have dietary restrictions, and second, getting permission first before having to go through the ordeal of taking it away from him. I was so happy that I kept trying to think of a way that he could indulge...finally I look at The SIL and say, no cake, just icing.... Now what parent would ever say something like that?? But you know what...he was satisfied and probably had the least amount of calories in his little icing "volcano" than those who ate their whole piece of cake.

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"On Valentine's Day I can wear my Thomas shoes....after President's Day I can wear my School shoes."
"What about on President's Day?"
"I saaaaiiiiiidddd AAAAFTER President's Day."
"What shoes will you wear on President's Day?"
"But there's just no school on President's Day."

Hahahahha

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"Is that your dog?" said the man who helped us move furniture this weekend to The Elder.
"Yes, it's just Skip."
"Can I take him home with me?"
"Um...you can just go to the pet store."

In other words, get your own dog! Hardy har har.

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"I think I want to move your computer to that corner of the room. Do you think you would like that?" (Always have to research if we will have a meltdown or not)
"Sure!"
"Well I have to wait for your daddy to come home because I can't do it by myself."
"You can keep trying!"

I'm so proud of him!!!

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Food...it's all in the presentation...

"I want Peanut Butter Bread."

We use natural peanut butter and tapioca bread, but The Hub and I have a passion for this, and we found it while we were in SC and bought 2 jars of it. Unfortunately The Elder saw it. Not knowing there was a difference in the PBs we use, The AP had accidentally been making their PB bread with the fattening, not-so-good for you PB. And being the Aspergian he is, The Elder REMEMBERED every detail of the label that at a simple glimpse he knew he wanted it.

So The Hub goes to make his snack and pulls out the Natural Peanut Butter that we usually use. The Elder would have been totally fine with it if he hadn't first spied the yummy one.

"I want the peanut butter with the BLUUUUUEEEE lid, not the peanut butter with the Lellow lid."

So being the smarty pants Hub he is, The Hub switched the lids on the peanut butter behind his back and we got NO complaints! Ha!

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Be sure to check out The Hub's post today for a good laugh. Sure would make a good wordless wednesday. I also put the web album in the sidebar...


Whew! I think I only have 2 things left from my list!!!
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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...

What were we putting in our mouths?

This is a timeline journal post.

We first learned about gluten back in June 2007 after his evaluation, but before we got the results and diagnosis. A friend of mine was telling me how her friend has a son with ADHD and had been on meds since he was 5. He told his mom "those pills make me sad." (This is heartbreaking because think of the nonverbal kids who are on these meds, or even my verbal son who can't describe his feelings and emotions.) He currently is 13 and takes no medication because his mom changed his diet.

So we thought, it wouldn't hurt to try it. If I can find the picture the Hub took of everything we had to pull out of our pantry I will post it. Our counters looked like a grocery store aisle. Our whole family went on the diet. For me, it really was to support the Hub since he would benefit from this diet as well. If we could get it out of the house, we can't cheat! Besides, if it would bring focus like it claims to, then I was all for trying it.

In September 2007, during our evaluation with the School System, the psychologist asked if we were seeing a difference in the Elder since the diet. And I really couldn't say yes or no, because I did a poor job documenting it, so I said no. Then the Jenny McCarthy era came. And she raved about the gfcf diet. We had considered taking casein out of the diet but really dragged on that because we all looooooooooooooooooooooooooove cheese and those substitutes just aren't the same. When Jenny said that her son's vocabulary doubled and he become more affectionate, I started realizing that I had noticed the same thing in the Elder. So we went ahead and took the plunge and took the casein out. Macaroni and Cheese just isn't the same, but we have finally found a great cheese.

About 6 weeks later to now, I'm seeing what I believe are the effects of removing the casein (if anyone can back me up on this based on your experience I'd be grateful) in his digestive system which seems to be getting closer to regular. He also doesn't whine or groan as much (which might have been from tummy aches from not eliminating). He also is eating. Today I didn't have to tell him twice to eat, nor did I have to tell him to finish. Maybe he doesn't have the full feeling? He has been playing with his brother a lot lately, as in he would start it. His pretending has increased tenfold. His conversations are conversations and not 21 questions.

He had a little allergy episode with the classic runny nose and watery eyes. The next day I ask him, "How's your nose?"
He checks to see if it is running and then says, "It's better."

To a typical family that might sound mundane, but I was mouth hanging open shocked at his response. About a week ago, this is how that conversations would have gone:
"How's your nose?" (no answer) "Look at me because I'm asking you a question." (darting eyes) "Is your nose better?"
Finally an answer, "Yes."

He has learned the phrase, "Want to join us?" (and says it ALL the time. cute) And the other day he accidentally knocked the Younger down (usually it in intentional - sensory-related someone said to me) and he stopped and went back and asked him if he was OK. I feel closer to him than I ever have.

I can't believe the progress he had made speech-wise since he's been at the new school. He also seems calmer. He's still having some self-control problems at school, but come-on, that is like Stimulation-Mart.

So now, on a slightly different perspective. What has this diet done to the rest of us?
For the Younger, I haven't really seen a difference. He's always been regular, he's always been affectionate, so I couldn't use those as litmus tests. He is talking more and in sentences, but then again he is 2 and that is what 2 year olds do!

For the Hub, he got a PR for his marathon time. Here is the excerpt on his diet...

What I Learned

So even though I didn’t eat enough on race day, I think the oveall change in my diet this year made up some of the difference on Saturday. One key thing to my diet has been drinking a vitamin enriched smoothie every morning consisting of Flax Oil (Omega 3,6&9), Frozen Blueberries, Soy Milk, and the Vitamin Smoothie Powder. Since I have been on the Gluten Free diet, my snacking has dropped some. Where I might have 2 donuts in the morning 2-3 times a week, I don’t do that anymore and some of the gluten food that is here at work are left untouched by me. Don’t get me wrong, I still eat my fair share of candy bars and other taste-good-bad-for-you stuff, it’s just now, I am more conscious about it.

For me, I personally look at a piece of cake or a biscuit or a pizza or any indulgent food that contains gluten, and almost immediately turned off (unless it has chocolate, then I waiver back and forth). When I eat gluten now, I literally become a zombie. One day I slept for 16 hours. Luckily it was a Saturday and the Hub was on kid duty. So now I think twice before I consider putting something in my mouth.

But I do have more energy, I lost about 5 pounds (finally got rid of my pregnancy neck without the exercise!), I drink my coffee black now which makes me feel very "grown up" hahaha, I eat much healthier, we save money by not eating out as much (and calories),

However, our grocery bill has not been pretty...

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????