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.
The last post of my blog
for 2008, that is. No I haven’t given up blogging, though it may appear that I have compared to what I started 18 months ago or so. But I need to force myself to blog. Not because I owe anyone a narrative of my life but because this blog does serve as a journal, and besides, it’s very therapeutic. I haven’t blogged since this post leading up to the IEP meeting on the 18th.
So there’s great news, and good news. The good news was that The Elder did not qualify for OT services. Ok if you read my last post, you might remember me hoping that he gets the services based on some of the triggers that led to “behavior reports.” But when the OT showed up some of his work, I was really floored by the amount of progress he has made with his motor skills. I was really floored by the amount of progress he has made with his motor skills.(I have video to support this too, but won’t be posted until next year. lol) When she showed us a piece of paper (one piece of paper) that was smooth (not crumpled), in one piece, with no “frustration” stripes all over the page of his ALPHABET, my mouth hung open. Yeah, sure he could recite his abc’s both forwards and backwards, by letter and by phonetics, by age 2.5, BUT at 4 years old, he couldn’t draw a consistent circle. About a year ago his circles, triangles, squares, and rectangles were pretty much indistinguishable. And don’t even DARE give him a pair of scissors to cut more than a 1/4in thick straight line (large zig-zags were ok though), without expecting a meltdown.**Thank goodness that his implusive glasses/shoe/food-throwing hadn’t migrated to scissors. It couldn’t have been pretty scary, tho I’ve gotten hit by a fork once or twice. Yay for plasticware. We’ve been recycling them from parties (our own parties…not other people’s. That’s just weird.) so we have a good supply in stock when they get lost in flight, snapped in two, or eaten by the disposal (oops). They are pretty darn sturdy. So seeing a perfect letter O made me giddy, but seeing a perfect S and a perfect number 8 put me in a bit of shock. I think me and The Hub blurted out at the same time, “HE did this?”
–wow–
She even showed us a picture of where he drew a person. It is all in pencil and has hands, feet (and stilts “like at the circus”), eyes (big circles), nose, mouth, ears, etc etc. Then in orange crayon there is a line drawn straight down the middle of his body (a), and then a line crossing it at the person’s waist (b) so that it looks like a cross. (Boy I wish I had a scanned version of it) He had explained to the OT that:
a) This is his spine, and
b) This is his belt.
–HI-larious–
So, his fine motor skills were no longer in question. And at home (and at school, as witnessed with my own personal eyeballs) his gross motor skills have improved as well (re: video that I have yet to post). His proprioceptive sense is maturing OR he is just getting braver/trusting more. Because he is starting to climb (I’m sure as taught by The Younger, expert monkey boy) and The Hub has a picture of him swinging on the HIGH “fireman” pole on the playground at his Fall Festival.
So…no OT. yay!
However The OT did recommend that he attend a handwriting class because he has an aversion to lowercase letters (especially the ones that “sink” below the line: g,j,y,p,q) and the d’nealian style in general. The OT is worried that if we “program” his chip to learn it this way that he will not be able to change it later. I’m not 100% sure that that is true because he does really well with a slowly communicated, very logical, self-motivating explanation to changes in routine, rules, etc.
So that was the big outcome. There were some other changes made in his IEP so that he wasn’t taken out of the classroom for any additional time than he already has been. He’s been having a “social group” session 2 days a week, and his reading group. But he is so accelerated that in his 15 minutes session 2 days a week, he would read a book and then take the test with a perfect score with time to spare and The Resource Teacher would have to provide him with an extra activity just so the others in his group could “catch up” (not that they were slow or anything). he was finished before she even got back to her deskShe said that the first time he took the comprehension test on the computer that he was finished before she even got back to her desk which is literally less than 5 steps away. Her classroom is about the size of a college apartment’s kitchen(nette). She said that at first she thought he was just clicking any ole answer just to get done as if it were a non-preferred activity. However, after multiple sessions of perfect scores she realized that not only was he reading the five questions on the test that fast, but he comprehended the book (that he just read) and could recall the answer at the same lightning speed.
–wow–
I also got to meet The Behavior Analyst who will begin her observations in January. She has a good reputation. We are SO BLESSED. Again, The Resource Teacher bragged on The Elder to her about how sweet and funny and smart he is.
“I just wanna eat him up with a spoon.”
were her exact words. Giddy Me! I could have kissed her on the lips. But I didn’t. Probably not very appropriate or socially acceptable.
So needless to say, I enjoyed my time and I didn’t need a kleenex unless you count tears of joy/shock.
Since then we experienced a FIVE DAY SMILEY FACE WEEK!!!!!! It was a first. He was SO proud of himself!
The Elder: I know.
So he definitely earned his Batter Batter Baseball.
We also had a successful trip to SC and back. A 7hr trip, that takes 10hrs with 2 kids who are potty trained and a dog. You can check out my tweets for an idea of what went down that week. Other than my ear/sinus infection and The Elder missing out on the presents, it was a very successful trip, only a few minor behaviors (like hitting and pseudo-biting) that I’m sure were triggered by the changes in routine and the excitement of seeing their cousins.
We are on the last week of Winter Break and I must say that I have really enjoyed having the boys to myself (The AP is on vacation too).
Stay-tuned for the following topics in (near-) future posts:
- Timeline – so what exactly happened during the last 6 months hiatus? cliff notes version.
- Video – shocking video of a hidden athletic talent. Goooooooo gross motor skills and coordination! Well, he still has the “Phoebe Run.” (soooo cute)
- Photo Album – Jesus was a carpenter so why can’t we?
- Christmas Quips – to be echolalic, to not to be…that is the question.
Happy New Year folks!
How could you vote out this cute face? #ASD
Here is the most recent update on his story.
Recently, I was sharing this story with The AP and showed her a couple of uTube videos about it. My purpose was to try to explain to her why I was so physically sick over The Elder being in kindergarten and getting these notes home.
I’m not sure what all I have blogged about The Elder Kindergarten experience. I would have to scroll through a couple of “lazy” tweet posts and some Success Sundays that may or may not be a week apart and may or may not be on a Sunday. I apologize for the lack of posts, but it has been a new era of unknowns, uncertainties, and anxieties.
Don’t get me wrong…The Elder is doing much better than I expected. Not that I had low expectations of him. I’m very much an optimist and believe in the best. However, he has EXCEEDED my optimism. And I can say right now it is a result of the kind of support we are getting from the school. That’s right. I said SUPPORT and SCHOOL in the same sentence and there wasn’t a NO or NOT in it either. The K Teacher is just so amazing. She actually makes eye contact with me at the pickup line! And…and…and……she smiles and waves at me. I know! And when I volunteer in the classroom (only twice so far, but I wanted to do it more often), she….talks to me. Crazy! And it isn’t yelling and it isn’t with furrowed brows or with condescending judgmental looks. At first, the “normalcy” of her behavior made me a little uncomfortable. At times it still does until I just get over my self-conscious self.
Well, the Alex Barton topic came up after a really difficult Thursday. October 29th to be exact. He had hit a few people in the cafeteria, he had thrown his shoes at 2 people (hitting them), and he had removed all the other students’ clips from the board that indicated which “center” they were stationed. I talked to him about it afterward. “What happened at school today?” in the same jovial tone I do everyday, and he gave me names of who he hurt and tried to explain to him what they might be feeling, such as fear. We sat down and wrote I’m sorry notes to the children. But now…I knew their names now. I don’t know if that was good or bad. But it didn’t feel good. Especially since I was volunteering in his classroom for the first time the very next day for the Fall Party. I actually felt like the children were judging me. How silly is that? But it was the parents that I was actually afraid to converse with. They’d ask who my child was and when I would point out The Elder it was like they gave me the “courtesy nod” and moved on. I know now that all of that was in my head. But when you read about stories like Alex Barton’s, how can you NOT have those fears? Fears that his classmates don’t want him there. And based on my past experiences, the fears that the adults don’t want him there? I got teary when I signed in at the office in total panick of what to expect when I got there. It wasn’t as bad as I thought. The lunchroom lady who lines them all up approached me while I was eating lunch with him (LOVED that!) and told me about some of the things he had been doing that was getting him in trouble there. But she ended with a very cheery and perky, “I love him, he’s so sweet.” Talk about a tension release!
Since then I have volunteered one other time and my fears were calmed even more to hear the other moms who volunteer more regularly tell me how sweet he is. Whew! THAT is why I want to volunteer more often. So much for good service to the school…it’s for my own emotional health! The Super Doc would be proud…
And then lastly, The new Asst Principal. He was a Special Educator for 13 years and this was his first year in administration. He told us during the last IEP meeting (when we were having the meeting in one room, and he was in the other room because he was sent to the office for having a meltdown in the classroom. He didn’t know we were there) that he knew more about autism than he did about adminstration. That made me feel really good. kinda.
Then The Elder got his first pink slip last week. He has an official school record. My heart sunk.
He’s had a really good week this week. But the thing is is that it is so sporadic. It changes week to week, day to day, hour by hour. Am I overreacting? Is this normal? Is this ASD? He has a bomb inside of him that has NO fuse. It’s either dormant or it’s exploding. There’s no ticking involved. But you take him aside later when he has calmed down and he knows exactly what he did wrong and what he should have done. Fortunately The Resource Teacher understands that he isn’t doing the misbehavior on purpose, he just can’t control his impulses. But because he has no empathy or a bland affect it makes him look heartless or aloof or apathetic to often very serious situations, even though he understands them as we do. It’s so difficult to decode him at times.
What I’m excited about though is that we have a meeting with the OT on Thursday to give us the results of his evaluation. I pray he gets services because I think that would help a lot. He’s been getting in trouble in the lunchline for running into people, (When I was there, I saw that he was pretending to be shunting cars on a railroad. But hey! He was pretending!), leaning/laying on top of people during carpet time, and tearing and crumpling his papers. I had started the joint compressions again. He likes them a lot. He even tries to do them on himself. Gets tricky when it comes to compressing his elbow and shoulder.
We are also getting a behavior specialist observe him in the classroom. The Resource Teacher is very excited about that. That’s really going to make a difference if she can pin point which scenarios tend to trigger the meltdowns. It’s funny because as his mother, I can anticipate meltdowns in the heat of the moment, but if you were to ask me, “so what triggers your son’s meltdowns?” I would look like a fool because I couldn’t tell you. Not without giving you specific examples, but that doesn’t help someone who needs to be able to generalize it for a classroom.
So hopefully I’ll get to post again before the holidays to update on the OT meeting. If not, Happy Holidays!
