Here is my last timeline post. This goes to mid-August. Here are the two posts that are referenced in that post regarding Summer Camp and Preschool for The Younger. (May, July and August details. Warning: Read at your own risk. May stir up angry feelings.)

• August 26, 2008 – The Elder had 2 weeks where he just attended school for a half day on Fridays. They do this to “ease” them into Kindergarten. Of course he has a meltdown the very first day, but then had some better adjusting to Kindergarten during his first full week of school.

• September 10, 2008 – We had a surprising First Parent/Teacher Conference and here is a post of a good example of how to decode a meltdown.

• September 16, 2008 – I took the time to be vulnerable and just cry in a completely separate post for just me. This was the day The Elder decided to show his autism colors. But at least The Younger’s situation was getting better. Here’s another positive post about The Younger’s progress. I was sick for 3 consecutive weeks and I was absolutely miserable. I finally had to take a steroid to get rid of everything. It worked but it totally screwed up my skin. If you know what I do for a living you can understand the drop in my general confidence to go out in public much less to work and see clients. In the Holiday Season of all times. As if I needed more things to be depressed about.

• October, 2008 – OMG, I never posted about the first IEP meeting! I totally owe you that.

• October, 2008 – My first time volunteering in the classroom for the Fall Party. It was following a depressing day because of The Elder’s behavior report that came home. This made for some major anxiety to even step foot into the classroom. Other details about this in this post. This year’s Halloween season was a total whirlwind. My parents were in town for a week, my father-in-law and girlfriend-in-law were in town for a week, There was a week of Halloween parties between the 2 schools and churches and oh yeah, Halloween itself. Because all this also followed a 3 week pause in my business in September because of sickness, this resulted in a dramatic decrease in production in October. On top of all that, for some reason I thought that I “save” my networking group and agreed to be the interim president for the next 2 months to organize the expected roles and update the bylaws. What was I thinking?

• November, 2008 – This is the months that I got tired of being way behind in this journal and signed up for twitter. But then I felt like they were “lazy posts.” I probably lost a lot of readers this month because I wasn’t blogging. It was a time I really needed to be blogging just to update my virtual friends so that I could the feedback and support of the autism community. This is my Thanksgiving Post as I took a deep breath and reminded myself that my situation is not all that bad. Things will get better and it could always be worse. So I count my blessing and move on. This was a very sincere and genuine post. None of that “fake it til you make” stuff to psych myself into a positive attitude. So I was proud of myself.

• December, 2008 – This was a weird month. The first weekend, The Hub and I went on an MK cruise that I had earned from accomplishments between Jan-June 2008. I felt guilty because I felt like I had done a 180 in the second have of the year…and i had. I was a little more motivated to be there but not for business or the kids or whatever. But for me. I was waiting to hear a whisper from God that would help lift the depression off my shoulders. I didn’t really hear it, but I think the prayers and positive attitude worked because The Elder had 2 weeks in a row (recall there are only 2 weeks of school in Dec) of FIVE blue cards. A perfect score. The first week I was so excited!

Me: You had SUCH A GREAT WEEK!
The Elder: (very matter of fact) I know.

We experienced a positive IEP and I finally shared the low-down on the IEP team in the latter part of this post.

We also had a good trip to SC for the holidays. When we got home, The Younger was asleep and The Elder walks in and stops in his tracks. He had the most excited look on his face.

The Elder: [The Younger] is going to be happy!
Me: (confused a little) Why is that?
He points at the Christmas tree behind me where instead of the usual holiday appropriate books we lay under the tree, there were gifts – unwrapped so it was obvious that one was a firetruck and one was a recycle truck.
The Elder: Mommy, I think Santa Claus came here while we were on vacation.

That’s when I knew that it was time to start having our own family Christmas Celebrations. I had been waiting for The Younger to get to the age that he was really getting into the Christmas Spirit and understood all the joys that come with the season. Now we have never talked about Santa Claus. I think with the Autism I wasn’t really sure how to approach it to program The Elder’s brain for the long-term. Both are very aware of the reason for the season. They even wrapped a gift of their own toys as a present for Baby Jesus. But Santa Claus they learned from outside the home ( btw I am not anti-Santa by any means). But when I just observed The Elder being excited for his brother and predicting his emotions, I made the decision right then and there. We are ready for some Christmas Spirit!

• January, 2009 – God has a weird way of preparing us for life. You can see last month as a tease or you could call it clearing off a part of my plate to make room for more. I was only a week behind de-throning myself from the president position, but I hit a double brick wall when some totally unrelated to anything else in this blog up until now sprung out nowhere. It’s one of those things that could really screw you later and needs to be fixed now because you never know when D-day is. This caused some turmoil amongst folk that don’t need to have turmoil. As of today, this is yet to be resolved. Ay ay ay!

Later that month, The Hub and I traveled to Phoenix for a Leadership Conference. I go every January. I almost didn’t go. But I figured that if I didn’t then I wouldn’t be doing my part and God might do something REALLY crazy to get my attention that I was going in the wrong direction. So out of fear, I went. I did feel much better and much more confident. However I still felt like my life was surreal. So many things coming at me at so many different angles. The following week we got a call from a local business who was doing a charity event and wanted to sponsor ASD Athletes as the benefactor of the fund raiser. It was so cool to see our name in the newspaper in the press release. WOW. We were so excited that we impulsively said yes, not fully understanding the amount of work that would be involved to get ready for the next 2 months before the event. We quickly drafted up a plan of action to get prepared and went into February fired up.

• February-March, 2009 – I spent the first 2 weeks SUPER MOTIVATED. Perhaps it was because it was obvious that I had to be productive. It’s sad when money for our family isn’t a good motivator to work, but money for the foundation got me going. But because I knew if I totally engulfed myself with ASD Athletes that that would be pretty much putting my business on hold (which also meant turning in my car – which I love), I made sure that I had a solid plan for MK. By mid-Feb, that plan was in place and I was so pumped. Until…the 3rd week of February, The Elder started to bring home bad behavior reports from school. He got 2 pink slips from the school that week. The next week, I got a call from The Asst Principal that The Elder was going to stay in his office for most of the day. The depressing part of it was that it was only 9am when I got the call. I don’t know why he didn’t get written up that day too. But the icing on the cake was the following week (week 3 of the tantrum series) which was also the first week of March, I got a call from The Other Asst Principal informing that The Elder had thrown his shoes and glasses and spit, which isn’t unlike most of his meltdowns, but now he is aiming for people. Specifically The K Teacher and The Other Asst Principal. Great. She wanted to know how I discipline that kind of behavior at home. I was totally speechless. How embarrassing. Then I thought, well it depends. Of course I let him know it is unacceptable but when I am there I usually know what the trigger is or I just know how his brain works and most of the time I prevent it from escalating to that point. Then The K Teacher gets on the line. The first thing I do is apologize and empathize with her frustration. Her frustration came back at me in such a shocking manner that I started to cry and could only say I’m sorry. Later, when I wasn’t so panicky and emabarassed, I sent her an email with the words and advice that she could use and she was receptive. I called the IEP to come together for another meeting. It was scheduled for the following week. I was impressed for the immediate booking, but I suppose they were as motivated as I was. Unfortunately both The Elder and me caught a mysterious virus that week and I wasnt able to attend the meeting. The Elder was basically out for 2 weeks because the 3rd week of March is always Spring Break. Shortly after it was obvious that I wasn’t going to the meeting, I get a message from The Resource Teacher with the new date and the news that was going to stress me out beyond belief for the following 2 weeks.

The Resource Teacher: (paraphrased) Monday after Spring Break, [The Elder] will be in the CDC room and earn his way back into the classroom. He has to “want to be in Kindergarten.”

That line haunted me for 2 weeks as I had to wait for the meeting on March 30 (yesterday).

• March, 2009 – Back up to February from the perspective of MK and ASD Athletes. I’ll make a separate bulleted list here to highlight the rest of what was going on in our life. I’ll have to make a separate post reporting on the weekend of craziness (Last weekend) because it was just that crazy.

A month before the ASDa event (which was held on March 28th), I discovered that NO PROGRESS was being made in preparations for the event. Important things like getting our mission statement and vision out of our heads and down on a piece of paper, or even more importantly, our website since it was only PR resource we had. I ended up taking on the Executive Director role, which honestly I don’t mind because I am a big-picture person and know how to delegate. One problem. I didn’t have anyone to delegate to.

• March 15th – A huge deadline in MK and I missed it. For the first time I think in 5 years. And it was a really bad quarter in the year to miss. I’ll be missing out on some stuff later this year. bummer.
• March 24th – Our first public appearance on WVLT our local CBS affiliate.
• March 26th – The Lola arriving to attend Career Conference here in Knoxville.
• March 27th - gets its own list:
  • Day 1 of Career Conference. Registration begins at 2pm
  • Our second public appearance on WBIR our local NBC affiliate, for the segment Live at Five at Four. (3:30pm – so I missed the first class of the conference but The Asst took my place)
  • Dinner meeting with conference attendees (5:30pm)
  • Opening General Session from 7-10pm

• March 28th -
  • Day 2 of Career Conference. Classes begin at 8:30am. I sent The Asst just in case I needed to do some last minute things for the ASDa event.
  • 11am-2pm ASDa Event at Boogie Down Baby
  • 2-4pm the last class of the conference
  • 3-6pm The Hub had to work the Knoxville Marathon expo
  • 7pm Slumber Party at my house for consultants who earn an invitation (I ate gluten…crab rangoon…they were hard to resist, but fortunately I didn’t have a gluten hangover the next day. Today however I’ve been a little sluggish. I have been writing this post in installments all day.)

• March 29th -
  • 5am The Hub leaves my bedside to go run the Knoxville Marathon.
  • 11am I’m freaking out because The Elder chose to have a meltdown right before we left and I seriously thought that we were going to miss The Hub at the finish line. That’s a whole different story. i’m sure he blogged on it. We were back home around 12:30.
  • 4pm I had to take The Lola back to the airport so she could return home.
  • 8:30-10pm (no joking) I spent talking to The Teacher in anticipation of the IEP meeting. She really calmed my nerves and gave me back my confidence which really probably all I needed and had I known that, we might have only been on the phone for 15 minutes. lol.
  • Oh yeah. and it was my birthday.

• March 30th – THE IEP MEETING – the very thing that motivated me to even attempt to write a real blog post yet only managed to create this monstrous timeline. You’d think that alone would motivate me to blog more often. If you’ve made it this far you must be a really good friend OR you are nosy OR you are OCD and have to finish everything you’ve started right now or you’ll lose sleep. If you stopped reading before now, then…it doesnt matter because you wont ever read this. right? right. For those who have hung in there. please dont lynch me but I’ll dedicate a post just for that.
• March 31st – Today. I have about an hour left to close the month. Thus far its not bad considering everything that’s been happening this month.

Related posts:

1. First Day of School
2. IEP

1. WHERE DO YOU CURRENTLY LIVE?
Knoxville, TN

2. WHAT IS YOUR CHILD’S NAME, AGE AND DX?
a. The Elder, 5, Aspergers Syndrome
b. The Hub, 37, Aspergers Syndrome

3. WAS YOUR CHILD PROPERLY DIAGNOSED?
a. Yes and then No and then Yes
b. No and then No and then Yes
Oi! It’s complicated, but that is the autistic world, eh?

4. WHAT DID YOU THINK WHEN YOU FIRST LEARNED YOUR CHILD HAD AUTISM?
a. I thought the OT was nuts. I was in denial for months before I agreed to have him evaluated.
b. I was actually relieved at first and then had to grieve for a long time and again on a couple of occasions as new “never gonna change” situations arose and I had to come to terms that they were “never gonna change.” I anticipate there being future situations where my preconceived ideal will be far from the actual. But I’m prepared.

5. WHAT IS THE HARDEST THING ABOUT HAVING A CHILD WITH ASD?
a. The lack of empathy, not from my child but from other people. If I had to hear “boys will be boys” or “all 4 year olds do that” or “My son does that too” or “That’s normal” ONE MORE TIME. I might have just imploded with frustration and the feeling of insanity. Even from those who have accepted his diagnosis and wanted to understand. They just could not.
b. The hardest thing about having a spouse with ASD is that often it is like having another child. I’m very fortunate that The Hub is much more aware and accepting of his Dx than one would expect, however the down side of that is the helplessness we both feel when we both realize that things are “never gonna change.”

6. WHAT IS THE BEST THING?
a. OMG. That’s hard to pick. I love his personality and his sense of humor. Not only is it something that maybe only a mother could love, but I think the whole autism community rallies behind. I am so amused, fascinated, and entertained by him, like seeing him making new friends and instead of small-talking to them he just walks up to them and starts going on and on about Thomas at 80 decibels within 5 inches from the poor child. He’ll just follow him around continuing with his narrative. The best thing is that often the child still will play with him because they are too young to judge.
b. I can count on his routine. If I can work something into his routine…It’s as good as gold that it will be done! The Hub and I have an absolutely amazing relationship. I couldn’t have asked God for a better partner and I wouldn’t trade him for the world. The multitude of lessons we have learned from each other and our children couldn’t have been taught to a PhD student in psychology.

7. HAVE YOU TRIED THE DIET AND DID IT WORK?
Yes, the whole family took gluten out of the house in June 2007. About 6 weeks later, about a week after his 4th birthday, The Elder said his first appropriate complete sentence, that not only made sense, but was a QUESTION. “What are you doing?” I realize that it might have been a script, since he didn’t wait arounf for the answer, but it was used appropriately and that was an amazing feat. About a month later before he started the CDC preschool under his first IEP (so overwhelming and confusing btw) we took casein out of our diets. Didn’t see as huge of an improvement in behaviors but did see an improvement in digestion and elimination. Today we do let him have cheese every so often, like at mcdonalds or if I have a salad. And he eats chocolate. But he has gotten used to not being able to have ice cream and cow’s milk and those things that would put his GI tract in overdrive, and that he can’t have gluten. Pizza was a hard one to give up, but Amy’s has a gfcf Spinach Pizza that they love and it is THE only green thing (other than m&ms) that The Elder will eat.

8. WHAT ABOUT OTHER BIOMED TREATMENTS- HBOT, CHELATION, ETC.?
No. I don’t feel like he needs to be medically “fixed.” Only properly nourished and trained to adjust to the world. Hmmmm, just like all humans?

9. WHAT METHOD OF ABA/Behaviour Therapy DO YOU LIKE BEST?
Social Stories, Hand over Hand, and regular sensory diet has been the most effective for us. The PECS didn’t work very well. He was too enamored with the velcro!

10. IF YOU COULD MAKE EVERY PARENT TRY ONE THING- WHAT WOULD IT BE?
To just TRY the diet. Yes, it’s hard, yes, it’s inconvenient, yes, it’s expensive, yes, it is worth knowing if will work for you. It’s hard to believe that a year and a half ago, The Elder only uttered 2 words phrases and a few 3 word phrases, which often were perserverations so you couldn’t really understand what he was trying to convey. Today you can’t shut him up.

11. WHAT DO YOU THINK THE RATE OF AUTISM REALLY IS?
I’m not sure. I look at every child (and adult actually) as if they might be on the spectrum. It helps me understand others, gives me insight on how to help others, helps me monitor my reactions to what others say or do, and helps me move on in moments that I have been hurt or angered by something another person said or did. The rate I guess doesn’t matter if you look at it that way.

12. HOW MANY KIDS WITH AUTISM LIVE ON YOUR BLOCK?
Don’t think we have blocks in TN. Just “round the curve”’s. lol. But if you go “round the curve” in my neighborhood, we have 2 adult twins about 4 houses down, a brother and sister at the end of the street, another boy that I’m not sure of his dx but he has ASD traits, and in my opinion, a un-dx child. So that’s 5-6 children all within half a mile from my house. Oh I didn’t count mine, so throw him in there too.

13. HAVE YOU EVER MET A RECOVERED CHILD?
What’s that? Is that like a recovered Caucasian? Puhleez. I’ve seen improvements in children, but if people expect their child to recover, then I imagine that those parents don’t enjoy their children as much as I enjoy mine. That makes me sad for them AND for the children because they can pick it up AND they can FEEL it. Even if it appears as if they don’t.

14. WHAT KIND OF EDUCATIONAL PROGRAM DOES YOUR CHILD GET?
He was enrolled in a pilot preschool classroom specifically tailored for ASD. There were only 7 kids in the class. It was THE BEST blessing in our journey. Without that, I’m not sure the blessings that followed would have been as effective. This school year, he had been transferred to the cdc preschool at our zoned school, but was moved to a mainstream kindergarten with resource support. He is the youngest male student in his class but the smartest with an IQ in the 99.99th percentile. There is talk about him repeating Kindergarten next year. Hmmm, we’ll see.

15. DO YOU GET SERVICES/TREATMENTS THROUGH YOUR HEALTH INSURANCE?
We get Occupational and Speech Therapy through our insurance but we haven’t used it in a long time. His IEP covers what he needs in those departments.

16. DO YOU THINK THE DIVORCE RATE IS REALLY 80% FOR ASD FAMILIES?
Probably, but I think that is the case for most marriages.

17. DO YOU HAVE A GOOD POOP STORY?
Hmmmm, which one do I share here????? I guess the messiest one was when he was up from a nap and had dug into his diaper for some sensory exploring. It was smeared on the wall, floor, crib, in between the railings, in the threads of the bolts that held the crib together, etc. Not to mention himself. ALL over himself. He went straight to the tub and got a hose down. Every hair was washed, finger/toenails scraped, and teeth brushed. Yeah…that was memorable. Meanwhile The Hub had taken the crib apart to detail it to avoid future surprise aromas.

18. WHAT IS THE STUPIDEST THING ANYONE HAS EVER SAID ABOUT YOUR KID?
“I think…” when they telling me their opinion of his behaviors after I have explained to them the series of events that led to the meltdown. hmmmm, because they know my child and how autism affects him better than me? It’s even funnier when they insist that they are right because I wasn’t there to witness what happened. I don’t need to…it is what he does…everytime…in those circumstances…don’t challenge me.
The other thing is “He looks so normal to me.” I’ve finally given up my crusade on this one and just smile and say, “Thanks!”

19. WHAT DO YOU SAY WHEN SOMEONE ASKS “WHAT IS AUTISM?”
A combination of common development disorders. When you have enough of the ones on the “autism checklist” then you win!

20. WHO IS YOUR “AUTISM COMMUNITY HERO”?
Our psychologist, The Super Doc!

21. WHAT GROUP/ORGANIZATION DO YOU THINK HAS DONE THE MOST FOR THE COMMUNITY?
The Pro Parents. They believe in quality of life and don’t focus on who to point the finger at.

22. DID YOU VACCINATE YOUR CHILD AND DO YOU CONTINUE TO DO SO?
Duh. Who wants a deadly disease?

23. DOES YOUR FAMILY ACCEPT YOUR CHILD HAVING AUTISM?
For the most part. Move on…

24. WHAT LESSON HAVE YOU LEARNED AFTER ALL OF THIS?
ASD is a part of my life and always will be. Everyone has issues to deal with in their lives. My issues don’t make me better off or worse off than the next person, which is what I try to remember when I do a regular “attitude-check.” I hope that my life is not identified by ASD. I am an advocate and will always promote awareness. That is my responsibility as a member of the community. But it’s not about who understands me, but about me understanding others. Not about being loved but loving others. When someone thinks of me, I don’t want them to think of autism, I want them to think, “I’m loved.” Easier said than done, I know. That reminds me of The Elder ’s special song, which happens to be The Prayer of St. Francis. Picked out and sung to him before he was even born. Calmed him when he was an infant, and named as his special song by himself. Hmmm, God’s plan can be freaky.

25. IF YOU COULD GO BACK IN TIME. WOULD YOU CHOSE FOR YOUR CHILD TO BE NEURO-TYPICAL?
No. My life would be boring, and I would have less friends. My kids wouldn’t be who they are today: sweet, respectful, polite, and logical.

Related posts:

1. Happy World Autism Day
2. New to Autism?
3. about the World Autism Awareness Day Challenge

A little over 6 years ago we lost The Eldest. I think that may very well have been the first time I truly cried from pain that was out of my control. At least since I’ve been married to The Hub since 1996. It was a lingering depression where I worked myself 60-80 hours a week, came home, fell into my PJs, and got up the next day to do it all over again until I was less than 100 pounds.

I cried when The Elder had jaundice and it wasn’t going away even with the bili-lights. I know now that it wasn’t life threatening but when you have no sleep, no experience with children EVER, a mini home tanning bed, and a cold screaming baby with a mask strapped to his head^* – I probably blew things out of proportion a bit. I think of how minuscule that issue was compared to many newborns, especially the moms of newborns I’ve met since blogging, who had much greater issues that I could even imagine. I totally took my baby’s health for granted.^*

I cried when The Younger was born^* I cried because I realized what a blessing he was. I’m finding more everyday why God put him in our lives. The Hub and I had been married for 7 years before The Elder was born. The Younger was a bit of a surprise and boy is he full of surprises! And has served so many purposes in our family development.

I cried when The Elder did his first 180 degrees and went from the “perfect” child to the “defiant biter” overnight it seemed. I cried to see his friends one by one, stop coming to play-dates, stop inviting him to birthday parties, and one by one be excused from preschools.

I cried when I missed goals when I felt like I did my best and still missed the goal (which honestly have been few where I gave it 110%).

I cried when ASD entered our lives. I felt clueless and helpless.

All of the above was confusing, frustrating, hurtful, and chaotic. But it was out of my control. All of that was confusing, frustrating, hurtful, and chaotic. But it was out of my control. Today, I cried because I made a decision that was completely under my own power. And it hurt like crazy. Not The Kiddos, Not The Hub, Not any part of my extended family, work, etc. It was a personal issue that dealt with MY confidence, MY self-esteem, and MY bravery.

^* I did have a few athlete friends, but they were all guys. They’d kill me if I didn’t include them here! I have made choices all my life about which crowd I hung out with. I tended to have popular friends because I was a cheerleader, but actually hung out with the other 97% of the students at my school. The same story with college. People knew who I was because they stared at me at football games and basketball games because I was the one tossed in the air, waiting to see if I would land or if I would fall, but I was friends with the “nerds” and sat at the “F.L.A.G.” table.^**There are lots of tests online. Even free ones if you are curious what your profile is. I give this assessment full credit for helping me love people more.I always wanted to hang out with the “popular” crowd but it never felt right, I didn’t belong, I didn’t feel genuine. Often they mistook that as being snobby and didn’t attempt to be my friend, judged me, and shunned me. I never really let it bother me. I’m not sure why, being that I’m the personality that craves social approval (according to my DiSC profile).^*Maybe because I was socially accepted by the people I did hang out with.

Today, I cried because of a conscious decision to let go of “friends” that were in the popular crowd at this stage in my life. This was a hard decision. I had to have a mourning period. But I have many friends that accept me and know me, the real me, who don’t judge me when I’m goofy, who respect me when I talk business, who love me for traits I didn’t know I even had! They are my popular crowd because I love them too. I care about them whether I have social approval or not. I don’t need the other crowd.

I think with a child with specials needs, I have learned to filter which crowd is the crowd that God intended to influence me, and for me to influence.I have learned to filter which crowd is the crowd that God intended to influence me, and for me to influence. It helps me to be more confident, more forgiving, and more likely to attract the kind of friends that are true friends. I took a moment today to make a list of people that have impacted my life for the better, many who are bloggers that I have never met. Many I don’t even know their real names or what they look like. And a few are right here in my city. I thank God for them.

Related posts:

1. about Excuses: Reasons to Celebrate!
2. Wherefore art thou?
3. Could I actually be normal?

Since it is a sensitive issue (to others), I can’t really go into major details here on this public post with a good conscious, but will post without showing the hidden content:

I was very pleased and was also glad that I didn’t have to enroll them in 2 separate programs. How convenient!

At the last IEP revisiting meeting before school ended, The Elder was granted an ESY, extended school year, for the summer for 2 hours of ABA support – that ends up being a half hour every other week during the summer. The Teacher specifically told me to talk to the director and teachers to let them know that she was not there to observe or evaluate them or the program, but the purpose was to ensure The Elder was maintaining the skills through the summer. I paid a visit to the director and teachers of the summer camp to do just that. The conversation went like this:

Me: I just wanted to let you know that The Teacher will be coming to observe The Elder this summer according to his IEP. She wanted me to make sure that you understood that she is only here to make sure The Elder maintains his skills and not to observe the teachers.
The Director: Oh I’m familiar with the process and so is [The Day Camp Teacher] since we were both educators in the school system. She will be used to that.
Me: Ok great, I left The Teacher’s phone number with [The Day Camp Teacher] in case she had any questions.
The Director: Yes that is why I placed her in his classroom.
Me: Oh thanks! I really appreciate that.

Again I was very pleased with the open and receptive attitude that each seemed to have in regards to having The Teacher there for The Elder. I really felt like this was a huge step in the right direction to calm my fears in being judged and ostracized there. I really felt like this was a huge step in the right direction to calm my fears in being judged and ostracized there. People, especially those who think they are your friends, try to minimize that fear just because they don’t judge or ostracize you (or at least they don’t think they are). This makes makes me feel even more rejected because now, my friends don’t even really understand what me and my family are undergoing. I am left feeling like my problems are trivial compared to theirs, that these behaviors are typical “boys will be boys” behaviors.

JULY
I receive an email the night before The Teacher’s final observation for the summer.

I was so in shock, so confused, so hurt, and so angry, all wrapped into a single panic attack. I had totally been blindsided (mind you that this happened about a month prior to The Younger’s incident at a different church). I stayed up late typing out a reply. It would have to be in the morning before I could contact The Teacher to let her know before she arrived. Fortunately I was able to reach her before she left her house and I asked her to meet me at Starbucks instead. I shared with her both the email I received from the church and my reply:

This email was later forwarded to both The Teacher and The Super Doc. When The Teacher and I met at Starbucks, I had her do all of the talking first, she didn’t know why she was meeting with me as opposed to going to Day Camp for her last observation. I had a few questions I wanted to ask her before I told her so her answers wouldn’t be biased. Some of them being:

1. About how long were your observations? (no longer than an hour)
2. How did The Day Camp Teacher and The Director respond to your visits [Please request password to Find Out What Jen Found in the rest of this section]
3. Why did The Day Camp Teacher have to sign off on the paperwork and why didn’t I get a copy of it? (for her job, she needed the signature to prove that she was there, and she was going to give me a copy of all of it at the end of the summer, which I didn’t get a copy of all of it and she even came by the house the very next day to drop them off into my newspaper box.)
4. What were her observations of The Elder and how did she interact with him?

This is longer than a parenthetical.
She explained that she pointed out certain behaviors that they need to recognize. For example:

Her concern which she made The Day Camp Teacher aware of was that he is regressing in the self-regulatory skill and that she needs to limit the number of crayons that he gets to use. Simple enough right?

Her point was to make sure he had visual cues. Even though the sign said “No Parking” the sign was a visual cue of his boundaries.^**Those were the 2 examples that stood out because they both involved self-regulation which was obviously what the rest of this post is all about.

I could tell she was getting a little uncomfortable so I went ahead and told her what the deal was. She was shocked. I could immediately sense the offense and hurt from her although I don’t think she would ever admit to that. She kept saying that she was sorry for me that I had to go through that and that they owed me an apology. I retorted that they owed her an apology! [Please request password to Find Out What Jen Found in the rest of this section]
I didn’t initially think that but after she said that I started crying right there in Starbucks in front of her because there was too much truth in it. She gave me some tips for Plans of Action. I’ve taken none. I wasn’t sure if it was worth it. I did request a meeting with specific people in the church, but I haven’t had that privilege and we still haven’t The Meeting yet.

The following email was prompted by the fact that when I picked The Kiddos up from the Day Camp that afternoon, I got zero eye contact from any of the adults in the classroom when I arrived. I continued to act as if nothing happened and got the boys. On our way out, they got their backpacks and I went to pick up their crafts. I got The Younger’s and asked where The Elder’s was (since they did everything together though I specifically asked them to to be separate).

[Please request password to Find Out What Jen Found in the rest of this section]

I was hurt and angry. I immediately called The Teacher and told her what happened. What if I hadn’t asked about the craft? Would they have let me leave without telling me all of that??? So here is the email I send the next morning:

That Thursday before and the following 2 days (Monday and Thursday, and the final days of camp), there were apparently some behaviors that occurred that I was not notified of until Thursday. Well, I was notified before that but via email but didn’t get it until then (and no follow-up call was made to me either to make sure I got the report).

The first ‘live’ notification I received was very abrupt. I remember the conversation verbatim and I remember exactly how I felt.

[Please request password to Find Out What Jen Found in the rest of this section]

Hmm. How nice. Should I just assume that it is The Elder, because she wasn’t specific. I didn’t have a chance to ask any clarifying questions due to the amount of time I was allowed to speak.

I immediately called The Hub and then called The Teacher, more to calm myself down than anything else. I knew that if I went there in the state I was in that I would totally make a fool out of myself (not that I didn’t any way). But I finally got composed enough to ask The AP to come with me to pick up the kids (she missed her class because of this). On my way to the church which is literally 5 minutes away from my house, I got a two calls on my cell phone from them. I didn’t answer the first one because I missed it while I was trying to tell The AP enough for her to understand the urgency of the matter (though I was taking my time since I knew that The Elder was safe and no one was getting hurt). The second one I was able to answer.

[Please request password to Find Out What Jen Found in the rest of this section]

I was fine until I was shown “compassion” in the most misunderstood fashion. There is nothing worse than having someone console you on a feeling that is not consolable by them because the feeling is towards them. That didn’t start the impromptu meeting off to a good start.

Before I go into The Talk, I want to be fair and present the other side of the coin

The series of events from the church’s perspective:
First, they didn’t realize that the ABA support was on-going throughout the summer, despite the fact that I specifically went to THREE separate people to let them know. “Oh I’m familiar with this process” didn’t appear as condescending at the time. It was more of willingness and openness to have some help with him.

They don’t understand that “This is my angry face” doesn’t mean that I’m angry at him. They also didn’t understand that that is a review session with him that what he was doing is not acceptable because it makes people angry. If he concludes that it makes me angry then oh well. Why couldn’t they understand that what I was actually doing was showing them how to handle him? A loving pat on the back as I was “training” him just reinforced that they just didn’t “get it.”

Additionally, The Day Camp Teacher has been dealing with some personal issues with sick elderly which why she was acting a little discombobulated, and as for the other Kiddos, it was those Children’s last week of Day Camp because of being out of town the following week. Of course I didn’t know any of this until after I had The Talk. But I can see where they were coming from as far as conclusions that were drawn, but I can’t explain the lack of communication other than the lame “uncomfortable” excuse.

Me: We need to talk, right now.

It would take forever to type up The Talk verbatim and the post is already over 6000 words! But I’m afraid if I don’t cover it it wouldn’t justify my boycott. Here are some pertinent quotes from The Talk:

They were simply looking at him through a “typical” filter. I honestly think that they perceived themselves being supportive. As doing what is best for The Elder. But in the end, instead of learning what is best for him from The Teacher, they assumed that they already knew what was best for him. I in no means think that these are bad people, bad teachers, bad parents, or what not. They were simply looking at him through a “typical” filter. Now if I can understand their perspective and forgive them, why can’t our family receive the same respect? Or is it just easier to turn your head, move on to something “easier” and more familiar. To pretend that it is a non-issue. To act as if nothing happened. To not follow-up or even realize that I have boycotted the childcare since then? I actually didn’t begin the boycott until I realized that The Meeting wasn’t going to happen, which was about 2 weeks after The Talk.

Related posts:

1. It’s like summer again…
2. Being sick stinks…but at least I got caught up on sleep
3. Another Parent/Teacher Conference, Please

The Hub: (in the most urgent voice while still arising from the dead) Jen, wake up. It’s 6:35!
Me: (dazed and confused) What day is it?
The Hub: It’s the first day of school and we wanted to be ready by 6:45!

Shoot! Blankets go flying off the bed. Why in the WORLD did the kids oversleep of all mornings? Usually they are jumping in our bed and whispering as loud as the possibly can that they want to go to the kitchen. But nope. Last night was The Elder’s Girlfriend’s birthday party so they had way too much fun and were totally pooped out. (Despite all that The Younger still woke up dry! yippee skippee!)

So Yes, today was the first day of school at the Primary School. This has been the most hectic week. We met his Kindergarten Teacher on Wednesday and got it all straightened out. Yes, you read that right…Kindergarten. Confused? Well you should be. I just got un-confused today.

Let’s see…I’ll do a timeline…

• Early February 2008: Don’t know where The Elder will be next fall. Don’t know what school or what grade or what program, if any of that. I did know the ideal situation. Here is the letter I wrote to the School Board. Since I can’t import all my posts, I have to link you to my blogger post.
• Late February 2008: We have his follow-up with The Child Psych who tell us HIS opinion of what we should do about school, which is kinda opposite from the transition class mentioned in the previous bullet’s link. _{(You’ll have to scroll down to the Doc’s Results to get to what I’m talking about, but the quotables are hilarious so you might want to take a tangent and be entertained a bit.)}
• April 2008: TWO months later, we catch word of some sort of (vague) news.
• May 2008: We find out that The Elder was accepted to be in a transition class! Yet we still do not know what kind of a program, nor which school he will be attending. He was approved for ESY and ABA support during the summer! _{(oh, which leads to another topic completely but I’ll get to that later)}
• July 2008: Again, TWO months later, at The Kiddos birthday party. Rumor had it that all the kids in the classroom _{(7 of them in this HFA classroom)} were going to be transferred to the special ed program at the school downtown, which was not an ideal situation. There was a lot of fear of regression and all the parents agreed that our kids had come such a long way in the past year. There was a lot of preparation among the parents to fight for the kids to be transferred to their zoned schools, which was good and bad. Good because it is where they would go to regualr school, but bad because we would be breaking up the band. Fortunately, The Elder’s Girlfriend lives in our subdivision and he can see her whenever he wants _{(she did not get placed in our zone because of her age)}.

Well, now that we know The Elder is staying in preschool, I can call The Kid Doc’s office to have his appointment changed to a regular well check-up. I did go ahead and get part of his shots taken care of. He just didn’t pee in a cup.

Before the end of the month _{(July 25th to be exact)}, I got an unofficial call from The Teacher leaking that The Elder would indeed be at our local, zoned school, and would indeed be in a CDC Preschool Classroom there. I was soooooooooooooooooooo excited. _{(No post to link to because I had gotten lost in cyberspace somewhere by this point.)}

Keep in mind this whole time that we know that the first day of school is August 11th.

• August 4, 2008: I get a called from the County School System officially announcing that The Elder “will be at the Primary School in a CDC classroom with Kindergarteners and 1st Graders. He will have a new case manager, but they working out the rosters right now. It will be one of 3 people,” and she rattles off their names _{(except the guy’s name because she couldn’t remember it. nice.).} “Someone should be calling you sometime this week with more details, but definitely before Friday.” Great! seeing that Monday is the first day of school, it would be helpful to know the details by Friday.
• August 7, 2008: I get a call from one of The Elder’s classmate’s mom. We are zoned to the same school so we were hoping to get in the same class together. Her message went sorta like this. “Hi, just wanted to check in with you to see if you liked the teachers. I didn’t see you at the meet and greet so I assume we didn’t get in the same classroom.” There were other details to but I got stuck on “meet and greet.” What meet and greet? Did I miss something here? And by the way, when is the new teacher gonna call me with the details that I obviously needed to be filled in on??
• August 8, 2008: I actually spend the whole morning _{(until about 1pm)} sitting with a friend at the courthouse. And since cell phones are not permitted in the courtroom, I just left it in the car. On my way home, I check my messages and I get one from the school. Yay!…not so fast. The message went something like, “Hi, this is your son’s Kindergarten Teacher. I just wanted to make sure that next Friday would be good for his stagger day.” Wha-wha-what?!?!? Kindergarten? Stagger day? And who is this lady who is neither a guy, nor have either of the ladies names that the School System gave me for who might be his CDC Teacher. I was so confused. I left a message for The Teacher. I left a message for The S/L Friend I have who used to work at that school. She called me back. First, she said I lucked out because we got an awesome teacher. Second, it sounds like The Elder is going to Kindergarten, because where the special ed classes begin on Monday, the Kindergarten students stagger in the first 2 weeks so that it isn’t so overwhelming. _{(Geez, when I was in Kindergarten, we were dropped off at the curb by our parents and headed into the unknown)}.

I was afraid to call The K Teacher back because I didn’t know what to say. Eventually, while in the parking lot of Wal-Mart _{(we were buying underwear for The Younger because he woke up dry AND he pooped in the potty 2 days in a row!)}, I got a call back from The Teacher who confirmed that was indeed enrolled in Kindergarten but it was a MISTAKE. They looked at his age a because he was 5 years old they assumed that that was where he was being placed.

I’m so confused! And a tad bit stressed out. Ok a LOT stressed out.

• August 11, 2008: No school today like I had originally planned. No school this whole WEEK like I had originally planned. The AP was leaving on Tuesday for Florida for vacation and I was banking on The Elder being in school and only having The Younger during the days. I ended up having to cancel a few things, and move a LOT around, and down right drop the ball on other things and unfortunately I don’t know which balls I dropped to know which ones to go find. Hopefully I didn’t drop them and just passed the ball to The Hub or The Asst.

HOWEVER, I had a message on my voicemail from like 7:15am from the bus driver who was trying to find our house. Wha-wha-what??? What bus? We get bus service even though we are in our zone? And even if so…why was she coming today? Kindergarten doesn’t start until Friday, right? I think. I hope. Boy that would be bad if The Elder missed his very first day of school.

(Insert story about The Younger and School that totally ruined the rest of the day. Grrr it makes me angry just thinking about it! Details soon. It will make you livid when you read about it. I sent a text msg to The Super Doc who did her best to fit me in but I wouldn’t have had time even if she could have. I send her a lengthy email instead.)

• August 12, 2008: I had to meet with a client Tuesday morning so I wasn’t able to return any calls. I had like 3 messages from The K Teacher, 2 messages from The CDC Teacher, 1 message from The Special Ed Supervisor for the County, needed to call The Teacher, and needed to call The School Psych. I didn’t get home until around 1pm so I got on the phone right away. The Hub had to totally take up the slack in other departments of life during the day for me to just sit in a one spot in front of the computer and just try to comprehend everything that was going on around me. I was pretty useless. I was able to call everyone back and take copious notes and verify, with much repeating on my part, as many of the details I could nail down regarding my child’s school status…in the middle of the first week of school. I mean we didn’t even have a Kindergarten Physical specifically because he wasn’t going to Kindergarten. Well, so much for planning anything in advanced. _{(I was also able to make a few calls for The Younger and the Parenthetical Insert above)} The really scary thing was that no ONE person really had the fully story. Each person paused with surprise, shock, or confusion at least twice as we shared details amongst ourselves.
• August 13, 2008: I missed my business network meeting at 8am. I missed my dentist appointment at 10am. I had a huge migraine/tension headache and probably could have stayed in bed for another 2 hours. But I could NOT miss the 2:45pm meeting at the school with The Teacher, The K Teacher, and The CDC Teacher. Well, it was close. We got stuck in the pick-up line. First week of school obviously had everyone a little chaotic when it comes to pick up. We couldn’t have been luckier to have had The Teacher there and really advocate for what The Elder needs in the classroom. I personally am excited about this little blessing in disguise. I think he will really do well. He still gets CDC support of course. And then in October we are going to review his IEP at the official IEP meeting and that should give us enough time to set some new goals in this new environment.
• August 14, 2008: The Hub took The Kiddos over to The Gma’s house to hang out with her so I could sleep in. I woke up at 10ish to an empty and quiet home. I didn’t know what to think. So I went back to sleep. _{(The poor bus driver tried to come get him again that morning. We were just all confused on this!)} Once The Hub got The Kiddos, he took them on a school supply spree, seeing that that was YESTERDAY and school started TODAY. Then The Hub _{(I should call him The Super Hub)} took The Kiddo’s a birthday party _{(The Elder’s Girlfriend’s)}. When I got home from my meeting last night (9ish) they were conked out! I went in there and laid down next to them and watched them sleep for a while. After all, I hadn’t seen them ALL day pretty much. I missed my little guys.

• August 15, 2008:

The Hub: (in the most urgent voice while still arising from the dead) Jen, wake up. It’s 6:35!
Me: (dazed and confused) What day is it?
The Hub: It’s the first day of school and we wanted to be ready by 6:45!

Me: (to The Elder) Wake up. It’s time to get ready for school. The bus is picking you up today.
The Elder: (looks at me with a crinkled forehead, stands up, heads down the hall, and sits at the kitchen table. without saying a single word…or to stop to pee)

I sat by the window with a phone ready to call the bus driver if she wasn’t there by 7:15. We all waited patiently. Well, some more patiently than others. Here are some snapshots:

The Hub: (in the most empathetic script) So, are you ok with having a Kindergartener?
Me: (relaxed and confident) Oh, yeah. He’ll be fine. It was not knowing if I had a Kindergartener or not that was killin’ me!

At the end of the day, I got to spend one-on-one time with The Younger, I survived the pick-up line, and I got out of taking The Elder to The Kid Doc to get the rest of his Kindergarten shots thanks to The Hub.

_{Please comment on the original post}

Related posts:

1. Another Parent/Teacher Conference, Please
2. How could you vote out this cute face? #ASD
3. First Day Back to School

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…

Related posts:

1. To Label or Not to Label…
2. What about Jenny?
3. Random Gut Reactions

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…

Related posts:

1. Party’s Over
2. 25 Things, Autism Style
3. First Day of School

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????

Related posts:

1. Going solo
2. What were we putting in our mouths?
3. It is Official