Making Sense of ASD's

If you don't have a great understanding of the spectrum as a whole....this image sums it up very well. I don't think any child can be neatly plotted on a chart such as this, but it gives a better understanding to what is meant by a diagnosis and the expectations (or lack thereof) that follow a particular diagnosis.


Anyway, Dr. James Coplan, who has written probably the newest very well written all inclusive handbook on ASD's now has a website/blog where he is sharing thoughts and other images such as this. As a very visual person, I am enjoying all of his articles and visual aids.


Check it out! http://www.psychologytoday.com/blog/making-sense-autistic-spectrum-disorders

World Autism Awareness

Today is World Autism Awareness Day. 


You know one family who was given a wonderfully beautiful child with an Autism spectrum disorder. We are all created in the image of God, and thus I do not question God's authority in creating my son just exactly the way he is. He is awesome, beautiful, funny, intriguing, smarter than I am, and has a God given purpose here on this Earth. Please take this as your open invitation to ask anything you've ever wondered about Autism or Autism Spectrum Disorders. I'd be happy to oblige.

... and more importantly.... this is the day Jesus died for all of us. He never sinned. He never did anything wrong. He became the sacrifice for me because I can't do it for myself. Do you want to know Him? He already loves you. "For the wages of sin is death, but the free gift of God is eternal life in Christ Jesus our Lord." Romans 6:23

Yale Undergraduate Seminars on Autism

Breakthrough! I'll post my thoughts on this subject later, as I have only had the opportunity to watch Behavioral Treatments, Dr. Michael Powers. I just want to say that if you want to understand behaviors of Autism/ASD's at their core, what to do with them, why it is important to do anything at all, this guy is phenomenal at the explanation. 

I plan on watching the remaining videos at some point. I highly recommend checking this stuff out!

http://autism.yale.edu/

Take THAT expectations!

Sometimes, the professional world helps me to gain perspective and get better handle on what we're dealing with. Having expectations is helpful, in part. It is helpful to know, though he began reading at age 2, that his understanding or comprehension of the text he has the ability to read MAY be well below the level of his reading. He actually MAY not be able to comprehend what he is reading AT ALL. And when it comes to more advanced fiction, later on, he MAY have a lot more trouble.


Long ago, he started laughing as he read. So, we've known that expectation was thrown out the window. He totally thinks some of the text/pictures are hilarious, especially in his Curious George books. It is quite entertaining to see.


But, yesterday, we got a new magazine subscription in the mail from Memaw. Highlights, 'High Five'. What a TREAT!! Page 12. Word Math Problems.  He got every single one of them correct, immediately.


"One spaceman is in the truck. Another one is climbing in. When he gets in, how many will be in the truck?"  Two


"Two spacemen are on the table. Look! Another one is climbing up the table leg. When he gets to the top, how many will be on the table?"   Three


"A spaceman is going for a ride on the dog's back. Another one wants to ride, too! When he jumps on, how many will be on the dog?"  Two


Take THAT Expectations! :)

"Ages 4+"

I don't usually have to look long or hard to find something to keep me laughing. With a 2 year old around my ankles and a 3.5 not far away, I am in constant struggle to keep my giggles under control.

You mom's know what I'm talking about. It's that kind of thing where they're getting into something they're not supposed to, but it's SO funny you just have to step away for a few moments before declaring their misbehavior.

Or, it's the thing that you so badly don't want to turn into an 'issue' and so you really, I mean REALLY shouldn't laugh in front of them.... but then you do.... and you just can't stop.  I see you over there laughing. You know what I'm talking about...



So, today, I was waiting for quiet to rush over the house (we call it naptime). I was sitting here pecking away at the previous blog post when DS came to me so upset that he didn't get to play at all between school/lunch/nap. I conceded to allow him 30 minutes of play time before he went back in for nap. I felt it was a very reasonable concession.

He picked a board game we haven't played in a very long time. There's a good reason that game was on clearance... it's no good. I set him up right near where I was and went back to my typing. And I hear.... 

"No, No, Nooooo. But, it says, 2-3 players"

"What do you mean buddy?"

"You have to have 2-3 players. Play with me."

"Ok. Be right there." No arguing with that one.

We played a little.... not having instructions or any real desire to find any, I just made up some simple rules and we played for a few minutes. All the while I was waiting for him to find the flaws in the made up game. But, he didn't. He happily played along.

Until. He looked back over at the box and studied it for a moment...

"It says Ages 4+. I'm 3. We're all done. I will play again on [insert birthdate] when I turn 4. Mommy, you are 31, so YOU can play LOTS of times."

I could not contain my laughter. So literal. So, well, obedient really. Hey, it DOES say ages 4 and up. Who can argue with that? 
And we were done.

Glorious Token Monsters

Mon, March 8: 2 Green tokens

Tue, March 9: 3 Green tokens

Wed, March 9: 5 Green tokens

Thr, March 10: 7 Green tokens

Fri, March 11: 5 Green tokens
Sat, March 12: 6 Green tokens
Sun, March 13: 6 Green tokens

I anxiously awaited meeting with DS's Psychologist again. Bottom line, I was very confused on how to meet him developmentally, understand him developmentally, and still parent and discipline appropriately. I knew there was a disconnect. 


When we're getting dressed for school and he won't put on his clothes, time out doesn't work. He's already upset, he gets even more upset and in turn, we're late for school, and he's even MORE upset about that.  He can do it. He just won't. I realize there is a road block besides disobedience, but I haven't quite put my finger on it. He is an adorably manipulative little guy, and there's not a thread in me that believes that he doesn't need the right kind of discipline.


We implemented a visual schedule, broken down into Morning, Afternoon, Evening, and Nighttime. It works wonderfully and we only have to use it when we NEED to, which makes me feel better about not getting him SO sucked into a routine that he is depending fully on the support. From experience, that's not good for him. 


So, that was one piece. We can breathe a little easier knowing that when he knows what is going to happen and how it happens, he does a LOT better.

We used a coin jar/treasure box system for a short while, but it was not effective. We told him to make 'good choices'. He really understood what good choices were. When he made good choices, he would get coins. 10 coins and he would get a treasure. DS would just fixate on getting his 10 coins. Then, he would constantly make up rules about how he was to get his rewards, "I will eat one bite and you will give me 5 rewards, then I will have 10 and I will get a treasure. 5 + 5 = 10. Ok? If I have 3 tokens, you will give me 7 more tokens and then I will get a treasure. yep. Ok.". Ha! The coins were just a new fixation and we finally took that away.


So, last week, I finally met with the Psychologist. 
Her suggestions: 
Try the coin jar again.
Remove the # qualification of how many he needs to get. 
Also, remove the words 'good choices' because the reality is that getting dressed and not jumping on the bed are NOT really choices. He is now to 'follow directions'. When he doesn't we use as natural of a consequence as we can. Naptime or getting dressed, we don't use time out. His delaying is meant to get out of doing it because it's not easy for him. Time out only makes that worse. A behavior like hitting or something dangerous, time out is still the consequence. This helps both with all the delaying AND with his understanding of time out. He seems to 'get it' much better now. He doesn't NOT get to put on his clothes just because he doesn't want to. 


So, if he isn't following directions, we either prompt him that he won't get a reward if he doesn't do it the first time and when that doesn't work, we hand-over-hand do it 'for/with' him. Telling him that following directions means he must do it the 1st time was a REALLY good thing for him.  It gives him a very clear expectation and he knows if he doesn't do it right now, there is no reward. When we help hand-over-hand, he is NOT happy about it and finally ends up saying, 'No, I need to do it by myself.'


He can also get rewards for using 'nice words'. Again, he must do it the 1st time in order to get that reward, so I prompt the nice words and the whining diminishes.


The coin jar/treasure box was totally revamped: Enter Token Monsters

One for DS, one for Baby sis. 

As you can see, there is a paper on the front of each racquetball jar that depicts the 'line' their tokens [poker chips] must cross before getting the coveted treasure from the treasure box.

We thought long and hard about all of DS's quirky little obsessions in the making of these monsters. The tokens had to be big enough so they could fall differently each time he inserts them so he would never have to get the same amount of tokens. If that happens, the little square on the front is removable and I can reposition it to change the goal # of tokens. So far, so good. No counting. Just pure excitement.

In fact, he was SO excited, SO motivated over these tokens, the responsibility of 'feeding' his own monster, we decided to up the anty. 

"If you go potty ALL BY YOURSELF [aka no prompting], you will get a Green token. A Green token can be fed to your monster AND you get an immediate trip to the treasure box"

As you can see above, it's working. Like a charm! He's so excited and proud of going potty by himself [pee only for now]. He's even graduated to flushing, washing hands, and drying his hands before he comes out of the bathroom. Insert Applause! The big difference between these potty successes and all the others in the past are that he is motivated by the reward, but he isn't going back to the potty standing and waiting for more pee JUST to get a reward. He is actually staying dry. All. Day. Long.

We're more relaxed and both of the kids get to take part in the wonderfulness of FOLLOWING DIRECTIONS the FIRST TIME, Using nice words, and pottying independently!!! We're 11 days in and it's still working!

All Glory to God for allowing the right people at the right time into our lives to help come up with these awesome ideas.

"And my God will supply every need of yours according to his riches in glory in Christ Jesus. To our God and Father be glory forever and ever. Amen." 

Phil 4:19-20

The radio

I've watched some movies recently, "Mozart and the Whale", "Adam" with main characters who have Asperger's Syndrome (purely for entertainment). I've read a little. Talked to a slew of other moms. I've come to my own conclusion that DS probably fits that label a bit better, though diagnostically, his language delay and toileting issues are not textbook for Asperger's.  Plus the fact that he's a bit young. Wherever he falls on the spectrum... it's not Kanner's Autism & I've been in overdrive trying to understand him better so i can be a better mom and advocate.  It is fair to say, I have been immersed & the asperger's books are helping more than anything else I've found so far.


Today marks a first.


For a long time, we've had pragmatic language on our speech session roster. We've worked on conversation volleys, requests, clarification, commenting, etc. It has only been very recently that, again, his language has exploded. He is still more on his own topics of interest and his longer conversations are usually tinted with lines from tv shows or his books on tape - but they are rather subtle - much of the time he steals their tone and not their exact words. He will even say, 'Look' to get our attention now, which is something that I JUST noticed today. He still has a long way to go, still needing plenty of instruction, but it seems as if he's met a whole new set of goals.  He's definitely starting to come out with some more original thoughts and needs.


I've never actually been a part of one of those conversations where you know that the answer that is coming out is far beyond the expectation of the original commenter. Until today. And even then, it at least started as something that might be expected from a 3 year old....and then he passed the line....and then he sprinted further..... 


Yesterday, we were at Walgreens. DS owns a little MP3 player, got it for Christmas. He saw this same little 'radio' at the store and debated me on buying ANOTHER one. What we would need another one for, I don't know. I imagine it was just his fascination that they sold the exact same one. 


Today, we took baby sis to the doctor. DS took his radio in with him. It is very quiet and I knew it would keep him out of mischief. When the nurse walked out to the waiting area she said,


"Oh, your radio is really cute"


His response, "Yeah, uh-huh. This is my radio. I got it at walgreens. We drove to number [address] 2956 in the black car. When we got there, we went in and walked to number [aisle] 9. It was Twenty nine dollars and ninety nine cents. It is blue with lots of numbers. I have 34 songs. Un-huh. Yep. I am listening to number 17 and I will listen to the whole song. when I get to the end of number 17 I will listen to number 18. I need to listen to the whole song...... "


I had to cut him off to go back to our room, but I would have loved to just sit there and watch this play out until he was done. 


I was amazed and in awe of all the words and sequencing that came out of his mouth. At the same time, I felt a bit sorry for the nurse who had made the innocent comment. And then, also, I knew this is a new thing we'll eventually have to work on. But I was just so happy to see him relating to a comment like that, I would have let him drone on and on all day if I could.

Confusion says....

I have found myself back in a place I visited shortly after the diagnosis. 

Confusion.

Winter break was a rollercoaster. 5 weeks off, some time at home, lots of time spent traveling here and there, no real schedule or routine. We had a couple of good weeks and a few really rocky ones. Therapies were hit or miss, with an insurance glitch and vacations. Out of nowhere, seemingly, came this flash flood of behavioral stuff I just wasn't quite expecting. Meltdown city is where I live on any given day. If he isn't melting down, he's engaged in a preferred activity. There are moments where he is just playing nice and engaging with his sister, being silly or complying with requests -- but the overwhelming part of his day is spent in His world with His rules and His expectations. Now, I don't mean he's in a corner all day perseverating on letters and numbers ---- but if the day isn't going just as he plans, we are all in for a real treat {insert sarcasm}.

Potty training is exactly the same at it was. 100% prompted for pee, though we can go whole days without 'accidents', it is 100% controlled by when and whether we send him and how compliant he is or is not. He lacks the piece where he understands he NEEDS to go. He is unaffected by the accident itself - not upset - not needing new clothes - he can go on about his regularly scheduled day and not care. 

My poor boy has now been restricted from playing computer since Thanksgiving because this reward is solely attainable through pooping in the bathroom [our system is supposed to help him move toward the potty, but he only has to start IN the bathroom to reduce anxiety and show us his ability to know ahead of time] and he is not able    .....or is he?    .....I don't know.  I am up to my eyeballs in poop filled undies in our attempt to give him enough TIME to 'get it'.  

......Is it helping?      ........Is it hurting?

All of our reward systems put in place (after our psych consult) have hit the trash. Revamped over the past week.

I've got 3 books started, none finished, and about 5 more on a waiting list. [see booklist]

The current influx of confusion has multiple levels.

I have compassion for my Three-and-a-half year old little boy who, at least on SOME level  isn't wired the same as my two-year-old. And at the same time, his language, his manipulation, his abilities make me think....... is using a different kind of discipline or support just giving in?

So, where is that line? Where do I draw it? What DOES he get and what does he NOT get? I feel like a failure at discipline.....    ..... or do I? 

xx  time out doesn't work

xx  popping is not an option {reaction is incomprehensible}

xx  delayed reward only turns into a debate

xx  immediate reward turns into perseveration

xx  natural consequences turn into all out meltdowns

Does he willingly choose to not comply with getting dressed for school in the mornings because he deceitfully and manipulatively wants something else? Is it anxiety? Is it a problem with routine? Is it a mom-softie giving in too easily? Is it inconsistency?

I wear two hats.

One hat is my ASD hat. When I put it on, I believe my son needs me to help him be better. To help him navigate. He needs me to steer him through the ever confusing world that doesn't conform to his ideas. When it is time to leave or we are late - he wants to change the clock. When there is no address at a business - he wants to put one there. When he thinks it is time to do X,Y, and Z -- there is no alternative. I am there for him to navigate with him and help him understand the world doesn't rotate around HIM.... and I don't want to punish him for disobedience that I don't even know if he understands. And then there is the sensory piece. Maybe the material is upsetting him. Maybe I forgot a part of the routine he has in his mind.

And my other hat is my mom hat.  The hat that holds expectations. It tells me that I have allowed him to 'get away' with manipulation. It tells me I have let him down by not expecting more. It tells me to put him in time out and show him that there are consequences to our actions. It tells me that he doesn't want to get dressed because I have allowed him to take control.  It tells me that I am babying him and he will never learn if I don't make HIM do it himself.

I am certain I need BOTH hats and neither works well without the other.

********************************************************************

My main problem is confusion. 

It used to be about diagnosis. Then it was getting others to understand him. Then it was finding the right therapists. Then it was preparing for the IEP fight to help them understand the disconnect in ability & deficit.

All of that is over and somewhere along the way he started growing up. He's 3.5 and the expectations of a child growing ever closer to 4 are just different than that of my tender 23 month old who was newly diagnosed. It isn't just about sentence length and motor planning anymore.

It didn't always matter where on this spectrum he fell. And now, all the sudden it does. 

If i could just understand why he does some of the things he does. If I could just understand his comprehension of the expectations we have for him. And so I read..... in hopes to find a profile that helps me to understand my boy better. And to be a better mom, too.