25 Things, Autism Style
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.
I’m dreaming of a…
That’s what I did…dream…practically all Christmas. I got a little over-indulgent in the gluten department. I’m not 100% convinced that the “sleep until 10:30am” morning and the “5-hour nap” in the afternoon was a result of the 15 eclairs and cream puffs I had. Because if I were, then that would mean I would never be able to eat them ever again. I think I still had some ill effects from the half of a biscuit I ate at Bojangles, but NOT from the cream puffs. (read: denial)
Christmas Eve was pretty low-key. NOT. The kids were all over the place. The Bouncy balls were the best things ever to keep them active in the house without destroying something. We ate pretty late for each meal so talk about throwing our schedule off. I start to forget whether or not we have fed them. That is bad. very bad. As we speak, The Elder is yelling in the back of the van “I’m Hungry” and I look at the clock and it is 6:30pm! Yikes! They haven’t eaten since 11:30 this morning! Well, we are going to stop at the next exit to eat and then I’ll finish this post…
OK, we are dedicated Starbucks drinkers… We just went around our butt to find one. That calls for a Venti….
Family tradition usually has us opening gifts at midnight after Christmas Eve dinner. However, The 6yo With The No Tooth and The 8yo With The Bendy Glasses have a track record of not making it past 8pm on normal occasions so The Brother (their father) decided 10pm would be the new midnight. Opening presents was fun this year because The Elder understood that that is what you do on Christmas. However I couldn’t get his focus off his 2nd present (racing cars) long enough for him to open the rest of his presents. So we kept them for the next day as rewards.
Because I was off in Dreamland most of Christmas day, The Elder lacked some serious structure. By the end of the day, he was not only hyper, but impulsive and aggressive. I was very frustrated because I knew it could have all been prevented had I been conscious, and also frustrated because I really didn’t know what to tell The Cousins who were getting the brunt of it, because I don’t think they know about his diagnosis so I didn’t want to use it as an excuse. So as “discipline” I made The Elder bounce 10 laps around the ping pong table and he wasn’t allowed to open a present that night. (We still have like 5 presents for them each to open!) Have you found yourself in this situtaion? And if so I’d like to hear how you handled it…or wish you had handled it.
Now, according to The Lola, Santa got stuck at the North Pole and wasn’t able to deliver the presents on Christmas Eve so we didn’t wake up to overflowing stockings Christmas morn. The Hub was disappointed because Santa usually brings us chocolate. Coincidently my parents have been abroad for the last month on a mission trip and was exempt from Christmas shopping beforehand. So Santa and The Lola struck up some plan to have her just take us all shopping instead to make up for both of their lack. So we went to the outlet mall today in Myrtle Beach to find some goodies.
Updated at 11:33pm (computer battery died in the car)
We actually went to Barnes and Nobles first because I wanted to get the book about organizing for the right brainers (I can’t remember if I blogged about that or not, but The Brother and I were discussing it) and a much needed Starbucks fix. The Hub dropped me and The Lola off so we didn’t have to drag the kids in there and she ran off to the bathroom and said she would catch up with me. In my quest to find this book, I came across the psychology shelf and, out of habit, stopped to browse. Driven to Distraction caught my eye, but I felt like the title was a little negative. Well, then I saw its sequel Delivered from Distraction. Much more positive title, so I picked it up instead. The first chapter is called “Read this if you can’t read the whole book.” Now THAT’S my kind of book! I scanned the other Adult ADHD topics when my mom came up behind me…
“Did you get your book already.”
“Oh, no not yet, I got distracted.”
My nonchalant, inadvertently ironic comment made me giggle. I knew right then I was going to buy that book!
Next Stop: Target. There are some wooden trains in the Hot Spot that The Kiddos went wild over. The Elder calls them “The Trains with No Face.” I’ll post pictures one day. We bought our Christmas New Year’s Cards to be delivered sometime after we get The Kiddos Holiday Pictures made. Will probably take advantage of The Hub photographic talents this year and save on some moolah.
Finally we arrived at the Tanger Outlets. I had a goal to find new patent leather dress shoes. I went to every shoe store. Found the perfect pair (on sale too) at Nine West. However they didn’t have my size. We got quite a few things for the kids and a few decoration for the house for next year (The Elder really wanted a star for the treetop next year, as opposed to the angel), but I walked away from our “Santa went AWOL” shopping spree with only the book. I looked at The Sister-In-Law and said, “So this is the mommy syndrome…all that shopping and nothing to show for it…I must be growing up.”
We did have a nice trip to see my side of the family. It was great to see and spend time with my nephews. It was humbling to see how grown my niece is now that she is a college girl. It was nice to meet my sister’s significant other. It was fulfilling to see The AP enjoy The Lola and The Tita’s (my aunt) filipino cooking as it reminded her of Brazilian cuisine. I was thankful that The Brother and The Sister-In-Law joined us today, since I usually don’t get to tell them good-bye. It was particularly uplifting to be sad to go. Usually within 24 hours I’m ready to haul tail out of dodge, but this year was different. I felt like it was time to go home sooner than I wanted. If I didn’t have to work tomorrow, I’d probably would have convinced myself to stay an extra day.
We left about 3 hours later than we planned but still arrived in TN at a decent time. The Kiddos insisted on watching the Blues Clues Holiday DVD THE ENTIRE 8 HOUR DRIVE HOME. I bought them Polar Express (which they have been whining about all week to see) and we had to stop it 20 minutes into the movie because of The Younger’s request. (The Elder was asleep. I imagine he would have argued this had he not been.) But even once he woke up, there was no switching movies. It was cute to hear The Younger sing “We just got a letter” and The Elder sing “Spin, Dreidel, Spin.” I, personally, ran the juice out my computer catching up on blogs and then ran the juice out of my cell phone playing Spider Solitaire and Sodoku. Whew, it’s nice to be home! I’ve dedicated myself to go back on the gfcr diet, limiting casein to cheese and only once a week and only outside of the home. I figured I’d feel less guilty if I gave myself some leeway. And….no more cream puffs.
"Are you kidding me?"
This was the response from my brother after I asked, “Is there a Starbucks in town?”
I wasn’t sure if it was “duh, there are Starbucks everywhere” answer, or if it was “we don’t have anything in our dinky town” answer. It was the latter. We didn’t plan our consumption very well on this trip. We assumed way too much, so our food routine has been off the last 24 hours. Actually our whole routine is but I figured, better to do this on a trip AWAY from home than in our own home. No blender for The Hub’s daily smoothies. Because tax is cheaper in SC (like by 5%!) we decided to wait until we got here to purchase groceries since we get the organic-gluten-free-casein-free-costs-an-arm-and-a-leg brands and every little bit helps. So we had very little food to choose from. We found a KFC during the trip and peeled off the breading to get it as gluten-reduced as possible. (Here’s a picture of The Younger discovering he like
corn-on-the-cob. Was NOT a fun diaper to change later especially since I didn’t think about bringing a sprayer.) We made a box of hash browns for breakfast and noticed in the ingredients that there is wheat flour in it (I guess to keep the potatoes from sticking together). The kids have been super hyper today and I looked at The Hub saying “no more gluten for them.” He laments, “why does gluten turn us into zombies and they go freakin’ crazy?” Well, The Lola (my mom) only knew of one place to go (because we scoped 2 grocery stores in town that had nothing organic, much less gluten-free) and we stocked up on some goods for the kids that they (and we) can handle.
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So we come in yesterday and The Elder goes crazy running around the house. He goes up to The Lola and says in shock and awe, “You got TWO uv em???? One over there and one over there?” I realized he was speaking of TVs. We only have one TV upstairs in our house and we have taken the the cable out of the wall. So they had 2 channels going simultaneously on ABC family watching The Incredibles and USA watching Christmas Vacation so that those in the kitchen were bombarded by clashing noises. This morning, we were serenaded by Spongebob at breakfast. I looked at The Hub and said, we have got to buy some toys to lure these kids away from the tube. So we went out today and got these.
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The Kiddos immediately took ALL (all 832 of them) the throw pillows off the couches and onto the floors. This is acceptable in our house because we have crappy furniture. My parents however have really nice furniture, the kind I’d like to have one day when I grow up. The Lola was hilarious when she decided, “Maybe tomorrow I’ll have to establish some house rules.” I interjected, “Maybe now?”
“Rule #1: Pillows are not toys.”
So The Hub made a sign and taped it onto the oven and printed that for The Elder to read.
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Today was the first time The Younger met his cousins and the first time The Elder noticed them. Collectively, they are ages 2, 4, 6, and 8. Isn’t that cute? (Since there are more of them, I couldn’t called them The Cousin.) Well, The 8yo announces “I have glasses now….Are yours as bendy as mine?” and then later over dinner he looks at me and proclaims, “did you know that animals are connected to sound waves?” So the smarty pants are obviously hand-me-downs, except each kid keeps the smarts before passing it on.
The Elder isn’t that great with names yet until after the 2nd or 3rd meeting so as he was calling after them “Hey, 2 guys….” and then later trying to get The 6yo’s attention, he calls after him, “Hey….the one with the no tooth.” I thought I would die laughing.
The 6yo With No Tooth shares The Younger’s love for bananas. We don’t understand why he put it on his head. I think The Younger has a classic sensory look on his face as that peel gets a little too close to his face. Here you can see The Elder indulging his most recent compulsion, flipping the light switches on and off.
“Rule #2: Light switches are not toys.”
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“We need a napkin.” (uh-oh)
“What happened?”
“He has tomato on his shirt.”
My immediate thought was bloody nose, then worse I thought about the bottle of ketchup on the table. But then I see The 8yo With The Bendy Glasses with a whole Cosco-sized container of cherry tomatoes, feeding them to The Elder.
“Don’t be eating those on the couch!!” (remember, it’s nice furniture.) At least he got the Elder eating tomatoes, um, unless he spit them out and that is why it was on his shirt. The Hub thought ahead while he was in there, and removed the squeeze bottle of potentially projectile ketchup from the table while reciting, the next rule…
“Rule #3: Tomatoes are not toys.”
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Off to deal with totally overstimulated kids…
