Find Out What Jen Finds

My journey on the spectrum of life … and the lessons I learn along the way …
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about Excuses: Reasons to Celebrate!

  • May 24, 2010 9:52 pm

I recently started a list on my phone called ‘Phrases that totally worked.’ I add to it whenever something surprisingly effective comes out of my mouth for the first time without my having a whole lot of forethought. Most are in the Parenting category. When I see it has ‘worked,’ I often go through shock & awe, and then pat myself on the back and pray it works the next time. Here is my favorite so far:

“Stop making excuses and follow my directions.”

This resulted in immediate compliance with NO lingering foul mood. I know! I had to inconspicuously pick my jaw off the floor and replace the ‘I’ve Had It’ adult-whine posture with a more confident ‘That’s Right…I’m the Boss…and I Totally Plan to Say Smart Stuff Like that all the Time cause I’m Smart and all’ stance.

I realized The Elder had reached a developmental milestone!

“…children master a variety of alternative strategies for resolving conflict. They can cajole the adversary, use bargaining, suggest compromise or cooperation (like turn-taking), and redirect conflict through humor.”

The School Years: Psychosocial Development – Social Problem-Solving Skills. The Developing Person Through The Life Span – (Berger)

So what’s the big deal? All 1st graders have mastered the art of manipulation, right? Yes! It’s ‘normal’! Yay! I haven’t decided if I’m more excited about his being developmentally on track or about his finally catching up with his nonverbal abilities!

For so long The Elder didnt say anything longer than 2-3 word phrases and only when prompted (and re-prompted). If he needed to initiate communication, it was physical and completely unrelated to his desire or need. For example, instead of pointing to a drink if he was thirsty, he would strip naked or throw his glasses across the room. It was as if he was fed up that no one was attending to his mental request after repeatedly thinking it. ‘Come on, people! If I’ve telepathically tried to connect with you once, I’ve done it a thousand times. It goes in my ear and out your ear! What do I have to do to get heard around here? Sheesh.’

When he was finally verbal, I heavily relied on listening to everything he would say in order to fully understand his triggers. And after some super-sleuthing, it would often fill in the gaps of why past meltdowns occurred. It was fascinating to finally learn the Reasons for his behaviors.

“How children think is as important as what they know.”

The School Years: Cognitive Development – The Legacy of Piaget. The Developing Person Through The Life Span – (Berger)


His Reasons were always literal (raw is more accurate) and logical (tho not obviously connected). While the former is to be expected, his logic far surpasses his age level. When he was 3 he tested beyond Kindergarten (he actually beat the test because it ran out of questions). At 4, his age equivalence was 11 years, 9 months. Because of this, I think there were a lot of unfair expectations for him to be more pragmatically mature. That discrepancy has been hard to parent, especially before awareness, but I imagine it is even harder to have.

Because of early intervention and inclusion, I think that gap is closing as he practices conversational skills. I noticed that his barrage of Reasons became Excuses when I, The Mom, couldn’t find an underlying connection between his words, body language, and past experiences. The usual and oh-so-confusing ‘complacent’ or ‘defiant’ reactions would then be displayed with integrity.

Do you know how freeing that feels? My brain gets to put the magnifying glass down more often…at least until adolescence…knock on wood…

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. Eric, 5, Aspergers Syndrome
b. Terry, 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, Eric 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 Eric 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, Eric 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 Terry 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 Eric ‘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.

Youngerese at its best!

  • September 23, 2008 3:09 pm

Today is The Younger’s follow-up appointment for his evaluation results. Well, he didn’t have to go, but The Hub and I met with The School Psych, et al (there were 4 total present, it felt like an IEP meeting).

Let’s back up to yesterday. I texted The Teacher to ask her to call me to discuss what we ought to do because he was doing so well at this MDO program. She suggested that I have a visit with The Director and The MDO Teacher. After all The Elder, loved his preschool (the one before the 4 he got kicked out of) but when I went to observe him, I noticed that, yes he did have friends…but they were all playing over there while The Elder was playing in the corner by himself. “Oh he is just the sweetest little boy. We don’t get any trouble from him.” They should have knocked on wood…

So I called and The Director said that she couldn’t but The MDO Teacher could. So I get there a little late (they didn’t charge me) and I sat down in his classroom. The first thing I loved is that when I got there, The Director made herself available for the first 10 minutes. I assured them that nothing was wrong I just wanted to ask some specific questions regarding The Younger.

They talked about how good and sweet he is. The MDO Teacher went through their routine from beginning to end. Very detailed – so there was no room for assumptions.

She said The Younger can pick out his name, he sits nicely on his mat, he’s attentive and follows directions and he is good at cleaning up, which was no surprise to us. When I taught him to bathe himself with a washcloth, as soon as he was done…forget those toy boats! and he started cleaning the shower stall with his washcloth! This is also the guy who got a fire engine and a playset of a broom, mop, dust pan, etc. Guess which one he plays with more. He also was more excited about the vaccuum cleaner I got for him at a consignment sale. “It’s my size!” is one of his favorite phrases. Now we can sweep our floors without hunting for the broom (which was always found in his room).

What was really funny was the clean up chart. They get a sticker each day that they help clean up. Check out his chart:

There were no red flags that got me worked up. I gave her a few things to look for, those things that appear age appropriate, but can linger a little too long. Like playing by himself, which she admitted that he does do sometimes. Also she said that he doesn’t really participate well in Music Class which is in the choir room with ALL the children instead of just his class of 6 or a combined 3-4yo class of 14 total. It’s EVERYBODY. So there might a little bit of anxiety in larger groups because she said he is fine in the classroom.

I made a point to let them know how happy he is with the program because he has huge anxiety of the unknown. To the point that he is a completely different person. But here, he feels loved and secure and I don’t have to hide from him in the mornings to get him to go.

“That is a huge compliment to you and this program.”

Then I asked The AP about gymanstics and the library because when I take him, it is meltdown city. But she said he is fine. So he only performs for me. This is the same guy who just a month ago (August 11) melted down for TWO HOURS at his evaluation before he recovered to be open to testing. He pulled he stripped naked and peed on the floor. It was very intentional, because the assessor said that it was in a perfect arch around him.

So today, I was slightly afraid that they were going to give us a diagnosis that is not appropriate. However The Teacher insinuated that we should take the services if they offer it to us because if we decline then we can’t go back. Even a year later…

Well, this morning we wake up to this:

After I put The Elder on the bus and The Hub went off to work. We decided to do a little art project. I was taking notes and snapping pictures the whole time so i wouldn’t forget just how hilarious this was.

Exhibit A

Exhibit A

The Birthday Card

Me: Today is Ms Nanny’s birthday!
The Younger: Yeah, and tomorrow is Daddy’s birthday.
Me: No daddy’s birthday is on Saturday.
The Younger: Oh Daddy’s birthday is Saturday and tomorrow is MY birthday.
Me: Let’s make Ms Nanny a card

Exhibit B

Exhibit B


(Click on pictures to enlarge)
Me: Can you make a face?Exhibit A-a
The Younger: That’s Hair.Exhibit B-a
Me: Where are the eyes?
The Younger: I can make a mouth…I’m drawing Daddy.Exhibit B-b
Me: Where’s his eyes?
The Younger: Oh, I can make eyes.Exhibit B-c
Me: Can you draw a picture of Ms Nanny?
The Younger: I can make a road.
Me: Oh ok.
The Younger: That’s not a garage…Exhibit A-bThat’s the garage.Exhibit A-c
Me: What’s that?Exhibit A-d
The Younger: Crashing…there’s lots of crashings.
The Younger: This is the garage.

Me: I think she will love it.
The Younger: WAIT! I not finished yet……there, I finished.Exhibit C-a
Me: What does that say, your name?
The Younger: No. says, happy birfday annie.

Exhibit C

Exhibit C

 

Enlightening Conversation

Me: Guess what? You have gymnastics today!
The Younger: I donwanna go gymnastics.
Me: But you love gymnastics (positive thinking)
The Younger: Gymnastics is BORING.
Me: Why don’t you like gymnastics?
The Younger: I be really sad…..I will miss you

Me: Do you like the feathers at gymnastics?
The Younger: No.
Me: Do you like the bubbles at gymnastics?
The Younger: No….Its BORING. (to the tune of “leave me alone already”)
Me: Do you like the trampoline?
The Younger: No…um, yes. (trick question I guess)
Me: Do you like the Bars?
The Younger: I donwanna go on big bar…is scary…I small…[The Elder] can go on big bar. He’s big. I small, mommy.
Me: Yes you are small. Do you like the balance beam?
The Younger: No, too scary.

Me: Well, [The Gymnastics Teacher] said you are SO good at the balance beam, and the trampoline, and the car, AND following directions.
The Younger: (immediately perked up) Heeeeyyyyy, I do directions at my school!
Me: Do you like school?
The Younger: No…Um YES I happy at my school.**Can you tell he is 3yo? No is the automatic answer to every question!
Me: What makes you happy?
The Younger: I not crying
Me: What do you like best at school?
The Younger: I don’t know.
Me: Do you like music?
The Younger: No
Me: Why?
The Younger: Cause I can’t talk.**He is SO my child! Except I like music class…
Me: Do you like story time?
The Younger: Yes
Me: Is it your favorite?
The Younger: No (to the tune of “duh”)
Me: Cleaning up?
The Younger: No (to the tune of “no, silly mommy”)
Me: What is your favorite thing to do at school?
The Younger: I like to……I like to……I like to…..Play! Outside!

 

All Boy
No Aspergers

Oops! Update—> The Hub’s birthday is on SUNDAY!! I thought the 28th was on a Saturday. I really did honey…honest! :)