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I’m out of breath trying to catch up – a timeline

March 31, 2009 11:51 am

For my own refreshment, I’ll need to jot down an recap outline. It’s sad when I went through my archives and I couldn’t remember the last time I posted a non-tweet, non-meme, non-Elderese/Youngerese of the Day post.

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 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! :o 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.

25 Things, Autism Style

February 1, 2009 5:14 pm

IF YOU HAVE A CHILD OR CHILDREN WITH AUTISM, PLEASE ANSWER THESE QUESTIONS AND TAG YOUR FRIENDS WHO ARE FELLOW PARENTS. YOU KNOW THE DEAL!

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.

Cathartic Moment

September 16, 2008 12:17 am

I cried this morning for the first time for my own personal hurt in a long time.

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.

*That was before the kind that gets taped down, though The Younger pulled that one off too, along with some skin at his temples
*I think I cried the most when he responded to his special song. That I will never take for granted! I sang it to him on Sunday!
*actually I was in shock that I only pushed 4 times. It was very anti-climatic. I practically sneezed and he fell out.

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.

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