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.

the Video did the trick!!

I am so thankful for technology today. I walked into my appt. w/the Psychologist and she says to me, "I had a chance to watch your video, and that is a very different little boy than I got to see last week"  She observed him in his OT session last week and he did as expected, "Perfect". He knows when someone else is in the room, and once again, he showed exactly 0 of our concerning behaviors.

I think this has been the best appointment of any sort in a very long time.

After viewing the video [http://www.youtube.com/watch?v=tL6P_QJdZfI] she admits that seeing the behavior in his natural setting leads her to believe more strongly that he is engaging in a very typical autism spectrum ritual that brings him pleasure and serves a purpose --- aka stimming. And I asked her what she thought about the circles/patterns he was running and jumping in and about the incessant asking. Her thoughts mimicked mine. There is not a typical flavor to it, though activity and continuous questioning is quite typical for 3 year olds.  He also has no cares as to where he's throwing that ball... he's just throwing it. And followed more results.

I completed a BASC-II last week [as will his teacher, but it is not in yet]. Very revealing, yes! I heard 'Clinically Significant' and in came that flood of emotions where there is a mix of 'Yes! Finally a piece of paper agrees with what I've been trying to get through to people for so long' and 'No, Really? Aww... don't tell me that'

Clinically significant (aka...this is a problem) issues included Hyperactivity, Anxiety, Atypicality, and Attention Problems. Borderline issues included Depression, and Internalizing Problems. He scored w/in a normal range for Aggression, Somatization (physical complaints), and withdrawl (which is important b/c he is enjoying other people, but in an atypical way). The overall picture is clinically significant. She also pointed out that this particular set of questions is normed against typically developing children. If she were looking for a diagnosis, she would have looked at a better gauge of ASD, which would compare him to other children on the autism spectrum. Makes sense. She said that she really gets a good picture between this report, the video, and some of our conversations.

The plan:
Move to phase II of the penny jar. It has not made a significant difference in his 'stimming' to reward those times where he is NOT displaying that behavior. However, we do know that he is very excited about the treasure box and rewards and beleive he understands we are not big fans of his writing. Now, we can reward him when he STOPS or attempts to stop. 'Close approximations' will be a good starting place. She said that our goal should not be to totally take away this purposeful behavior... but allow him a safe environment with a time & place to do it.

We are also going to teach him to take a deep breath and blow out when we are in the midst of stopping the behavior - with the goal being that he would replace the behavior ("hands down") with an anxiety reducing mechanism (blowing air out) on his OWN (at some point) when it is not an appropriate time/place. And if we eventually end up allowing the behavior in a room, or even at a certain time of day, or with a set of rules, wonderful.

And we will be implementing SOCIAL STORIES!!! Which brings up a sore subject for me today. For all too long, I bought into this idea that he was 'too normal' or 'jumping off the spectrum in a couple years' or whatever other mumbo-jumbo is out there. I learned more about autism pretty quickly and admit to really starting to understand after about a year. But it left me with this false sense of what 'therapy' will look like. As if we'll be doing all high-level interventions and he will need minimal support.

What she helped me to understand today is that autism is more about the deficits and not about the abilities. She said that she gets that a lot of  'well trained' professionals are still buying into the idea that you have to flap or you don't have autism. But, the truth is that the deficits and abilities can be all over the place. Low IQ/Low Autistic Behaviors, High IQ/High Autistic Behaviors, High/Low, etc.. It's not cut and dry.

So, my picture of interventions hasn't included an idea that he would use picture cards to reduce issues with transitions --- social stories to get him to potty --- and relaxation techniques. How can he need that.... he's SO VERBAL.

The simple truth is that he does have difficulty with transition...... and he might need a picture of the school so that he will just get OUT and not go through this whole deal about 'I dont like to go to school' every morning.
And maybe he has a hard time following detailed instructions..... and he might need a social story so that he will just get DRESSED without running around the house and wasting 20 minutes. All of these things are ok. I can now feel OK that I'm not doing a disservice by allowing him some extra help along the way. It's ok that he's not just going to 'GET IT' and bam, be potty trained. It's going to take work. I'm ready. Let's go.

Trial: Penny Jar

The Psychologist suggested using a glass baby food jar and coins to praise DS for NOT writing in the air/finger writing/walls etc. Instead of using CBT, we are going to use Behavior Modification to try to minimize the anxiety ridden behaviors that we think are interfering with a large chunk of his day. Week One, we are to ONLY tell him that we are proud of him when he doesn't write with his fingers, drop a coin in the jar (making sure he hears but does not touch) and then reward after a certain amount of coins are accumulated. We are NOT to say anything about it when he IS engaging in this ritualistic behavior. His reward is one prize out of his new Treasure Box (which he loves). There are sheets to play hangman & dots, mini candy canes, chocolates, and 5 minute computer passes.


Week One:
   Thursday.... I started the day journaling about his behaviors so that I could accurately picture a baseline of anxiety and behaviors from day one. Today was a school day, and OT day, and the Psychologist observed, a day where we went to Target, and one where he was heavily engaged until nearly dinner time. NOT a good day for a baseline. After thinking through my own answer to 'how much does he do this', I asked hubby...who had the same answer, I asked a friend who also agreed, and grandma admitted that she is noticing all the behaviors increasing as he gets older too. I think it's sufficient to say that for every 15 minutes that he is NOT being fully engaged, he IS engaging in these ritualistic behaviors of writing in the air (numbers associated with his play or tv shows), writing on walls (more related to high anxiety), and writing on tables or scribbling on non-existent note pads with his fingers for at least 4-5 opportunities lasting from a couple seconds to a full 5-10-15 minutes. He is spending significant amounts of time intertwining play and these behaviors and it is SO rooted in his day that it is inseparable from most any activity he participates in.
   To begin with, he was VERY excited about his treasure box. He was very happy about us saying we were proud of him for NOT writing with his fingers. We spent the first 10 minutes after introducing him to this new thing constantly finding opportunities to reward him. He picked computer time from the box as his treasure.
   Right off the bat, he wanted to tell us over and over and over and over "I'm not writing in the air, can I have a reward? Reward please, Reward please!" and we explained that he would not get a reward if he was telling us to give him one (because he was not engaging in anything except the fixation on the system itself)
   After a few visits to the treasure box (always picking computer time), he began to incessantly start to chatter. He twirled his hair, raised his shoulders, and gave us a play-by-play of every move he was making as if he was a commentator at a football game. Finally I asked him why he was talking so much. And he says, "Because I'm not writing in the air"
Once the newness of this system wore off (about 2 hours) he incessantly wrote on walls, the air, tables, fake notepads, fake envelopes, etc.... It literally looked as if he was forced to put himself on Fast-Forward mode to get all the writing in that he couldn't do while I was rewarding him. He wound himself WAY up before bed.
Looking forward to maybe a BETTER day tomorrow, I hope.
Questions: Baby Sis will not allow brother to be the only one going in the treasure chest. Do we reward her for 'not writing' or do we use the same box for a different purpose so that she is not left out?
Is there anything we CAN or should do right now to remind him of what we're looking for when He starts in with increased behaviors, in FFWD mode? I was thinking of jingling the change around in my pocket or giving a gentle reminder. OR maybe that is meddling too much?

The Psychologist ~

A humbling experience I will say. 


Usually the first appointment with a new professional has little progress. He's a difficult little dude to understand and I like to prepare and try to paint the best picture I can of the concerns that bring me to their office. The responses to his atypical presentation of ASD range from he is 'High Functioning' to 'Very mild' to 'Are you sure?'.  We've had some good experiences [namely current OT] but for the most part, it takes a lot of observation time to finally SEE HIM and SEE his issues. 


I am not used to hearing anything 'bad', anything that I actually know to be true... they usually water down my concerns and it takes me either 6 appointments to get to the meat OR they just don't get him at all and we start over. 


Not today, my friend. I have YET to be shocked at one of these appointments, in my head, I issue a little challenge --- Alright *arms crossed* I challenge you to tell me something I don't already know.


And today she did. 


Q: "So, when you talk about these ritualistic behaviors (finger writing), tell me about how many hours a day do you think he is engaging in them?"


A: "Well, subtract the time he's sleeping, and then I will have to say, how many hours is he NOT engaging in ritualistic behaviors? If you give him 15 minutes, he WILL do it at some point. It depends on how engaged he is as to how much he'll do it. But unless he's glued to the TV or a book, he's air writing, table writing, writing on doors. It's getting worse."


She gave me a little word picture to think about. She said that kids who are engaging in these behaviors & are looking at an OCD diagnosis [not necessarily what we're looking at] ONLY need to be engaging in ritualistic behaviors for ONE hour a day. And ONE hour a day is a real problem. ONE. 


*shudder*

She said to me, 'This is a severe problem'

And then, she read some of the results of standardized testing on his IEP. She said that when they look at a child's IQ (132) they like to see how it compares to adaptive functioning. She expects that a child functioning cognitively in the 98% should also have adaptive function near 98%. And this is what I didn't know. Never knew. He is at 16%. 16. 

Now, I know that numbers are just numbers... but nobody ever told me that. The score said '86' and I really didn't know what to compare that to... and I didn't ask. All the paperwork we've filled out, all the professionals, and exams... he always 'passes' with flying colors and the professionals look at me like I'm the one overreacting. 

That number is significant. 

I know this finger writing/air writing is inappropriate, intense, frequent, and taking up WAY too much of his day. It is masked in between typical behavior. And to be frank, I barely see it some days because I'm so used to it. And I'm used to everyone minimizing the problem with it. No solutions. No fix. No help. We can't get him to stop, they can't, I guess it is what it is. I'm overreacting. 

Making a correlation between his adaptive function and the frequency of this behavior leads her to believe that a large part of his day is spent in true anxiety and distress. 

She said Cognitive Behavioral Therapy is not a good option for this frequent of a behavior. If it were just the doorways when he goes in/out, then she would have made the behavior move to a spoken #... to a whispered #... to a # only said in his head to himself. 

So, she wants to do a behavior modification. For the next week, we are to explain that we haven't been rewarding him enough. That we want to give him more rewards and that it makes us very proud when we see him NOT writing in the air. And we are to drop pennies in a jar (so he can hear) when he's NOT engaging in it. And at a certain # of pennies, he gets rewarded. And we are to reward him frequently. 

She also planted a bug in my ear about medications. She said that this intense of a behavior is so rooted in anxiety that she sees an SSRI in his near future. But, she likes to start with the least invasive treatment first, so we will try this first. It seemed as if she really understood that parents freak out over the mention of meds. She was solid in her opinion, but wanted to allow me some time to think it through.

Potty and Perfection/Inability to be Wrong took a back seat until next week. She is going to observe him today at OT and see how this tranlates out of the home setting. I honestly can't really remember... I'm SO used to it. 

And that's it. Hard day for me. It was the roughest appointment I've been to since June 2 2008.. the diagnosis. I've never heard the word 'severe' attached. And it hurts.

No matter what, I know MY GOD created him. He gave DS to ME as his watchcare and We will trust in the Lord. This is hard. I was not promised it wouldn't be hard.

Game Shows...

  

 Game shows. They're just a lot of fun? right? Well, if you're ok with winning AND losing, then yes. If you are devastated at the mere thought that something on TV could be WRONG and someone would tell them that they are WRONG and then give a new answer, then not so much fun anymore. 


It started with Price is Right. Then the 'bow, bow, boooow' noise showed the disappointment on Bob's face and the contestant didn't win. Then it was Family Feud. The big red X in a big red box sent him into a shaking frightened terror. And yesterday, it was Lets Make a Deal. What was I thinking? He happily watched. He enjoyed the show SO much (I mean, come'on, who doesn't just LOVE it when you are given the choice between 2 doors or cash right?) that he walked around asking us questions like, "Would you like Door #1 -or- $99" with a huge grin on his face. 


And then I ruined it for him. Forever more. I didn't think. I didn't protect him. He will not even allow me to talk about Door #1 and Door #2 now. I gave him 2 doors and he picked the one with $0 (which he understands, by the way, to be bad) and he lost it. He shakes. His eyes fill with tears. His face is transformed. And he starts to bawl. 


Perfection has been a big deal in our home for a long time and sometimes I wonder if I didn't know what sets off our son what our life would look like. If I purposefully went about our daily life (making changes to schedules, cancelling shopping trips, turning off shows before they are over) would we be a living nightmare? or would we be teaching him valuable life lessons? 


But when you see THAT LOOK in his eyes, you cannot mistake it. I don't know how to do it to him. I KNOW that he needs to learn these things, but I think its a slippery slope. I've got to do it RIGHT. 


So, we've made an appointment with a Psychologist. Another piece to our puzzle of OT, SLP, DT, Preschool, Neurology, Pedi, ENT, Dev. Pedi, Craniofacial, Gastroenterology, Genetics... and someday soon I will probably be revisiting Allergy [crazy side note: Im wishing they ALL rhymed, because they ALMOST all rhyme but not actually ALL of them, and I am now thinking... OH... this is where he gets it from]

I recently rather enjoyed this post by Hyperlexicon  discussing how the Wii is helping her son with some of his perfection issues among other things. We had the opportunity to play a little Wii over Thanksgiving with my brother and DS is not ready yet. He was so ZONED in and I really don't think he or we would ever do anything else until it was safely locked away in a closet. We'll revisit that in a year or two.

POOOOOOPEEEEEEEE

Sorry for the title. Just a little excited. We got a Thanksgiving present just after putting up our Christmas tree thanksgiving morning. He went POOP on the POTTY FOR THE FIRST TIME! Had to share!!

The Biggest Number...

I really thought DS loved my workout video and doing it with me because it was interesting and movement and he got to do something with mommy. 

....until..... I hear from the other room..... to his sister [who isn't paying him a lick of attention]

"Ok. And 12, 11, 10, 9, 8, 7, Keep it up, 6, 5, 4, 3, 2, one more and..... "

She was playing with the barn.

Boy did he fool me.

Frustrated

Jen (SLP) brings the same toys each week. While our DT and OT feel the need to often buy new things to keep DS interested, Jen always seems to find a new game for the same old toys. She amazes me. The beloved little chubby cars are an all time favorite for DS and Baby Sis. We've worked on everything from  choices, to scripting play, to crashing and tolerance for 'oh-no' with those cars. 


Today, we were working on 'Thank you/You're Welcome and Excuse me'. Jen used her little bag of bears to talk about where they were driving to, scooting the cars around saying things like, "I'm going to the fair.... oh, can I ride? .... Yes....Thank you.... You're welcome". DS was playing along quite nicely, taking our prompting and modeling for the Thank You's and You're Welcome's very well. He was amused and enjoying our playtime quite well. 


But we realized that when he chose to put a bear in a car or ask for a seat, a Yellow bear could only sit in a yellow car and a blue bear had to ride in the blue truck. Then he started moving OUR bears around because they were in the wrong cars. We all (Jen, DH, and myself) looked at each other and decided to stretch him a bit. I like to call it the SET-UP. 


OOOOOH. He did NOT like that at all. We moved the bears about, taking them different places and changing cars. All the while DS was saying, NO NO NO.... as if to say that they really couldn't sit in the wrong color car. NO NO NO!!


After a while of that, he decided it was ok if they sat in the wrong color, but he assigned new colors to each bear and still HAD to sit in the color HE deemed appropriate.


Once we pushed him just over the edge we gave in and Jen asked him if he was FRUSTRATED?? We worked for a few minutes on what FRUSTRATED means. He said, yes, he was Frustrated and we moved on. 


Later that evening... DS was at the dinner table writing in the air, squirming around in his seat, doing everything OTHER than eating or engaging with the rest of us. So, we told him to put his hands in his lap and we started asking him questions about his day.


What did you have for breakfast today? Did you go to school? Who did you play with? What did you play? Was it fun? 


He was going along with our questions pretty well, although we had to keep reminding him to keep his hands in his lap and no writing in the air to keep him engaging with us. 


And then, Did you go pee-pee in your pants today?


.......All joy wiped from his face, he hung his head. Put his face in his hands. "I'm frustrated".........


OH. Sweetheart. It was all we could do to console him and keep our tears at bay in that moment. He's never shown any emotion about going potty or having an accident. Never. But the way he hung his head showed the shame in his mind that he never had a word to express before.


Oh. My baby boy. I'm so sorry I didn't think about how it makes you feel for me to talk about it all the time. I'm so glad you have one more word to express that you FEEL just as much as we do, you just don't always know how to show it.

Sonism

Speaking to his little friend who is over to play, he says, "Lets go to the ABC store to buy some more things we can play with, it's for 99 cents, ok?'

He cracks me UP!

DS came RUNNING into the room to request a pen. This happens all the time, so I just looked to make sure he had paper and handed it over. About 5 minutes later, I walked over to redirect him to something OTHER than writing and this is what I found.....

Appropriateness score:  60 year old woman


Funny score: Off the charts!


Note to self: Don't leave the TV on something other than PBSkids when I'm not in the room. Notes for old lady pills will follow.

black & white

June 28 I wrote a list of all my concerns and things I knew DS needed to work on for the IEP.

Jen told me last week that it is time to reassess his speech goals. When she says that, I know it is my job to be on top of what I know, so we can work together in our expertise.

So, I pulled out my handy-dandy list.

It has only been 4 months since I made that list.
Right there in black & white I can see his progress.

✓ Done
✓ Mastered
✓ Emerging

✓ Will respond to choice questions without any echolalia.
    still having a hard time with the choice, but not echoing our questions!! 
✓ Will request "more" without prompting consistently
✓ Will use pronouns I, me, my, you, your correctly in conversation
    very much improved, still not 100%
✓ Will protest words other than "no", such as "I don't know" or "stop it"
✓ Answers/Understands Wh Questions (who,what,where)
✓ Make Observations in environment
    much improved, especially with sister
✓ Respond to greetings appropriately
    much less delayed, more appropriate
✓ Express/Respond to Thank you/Your Welcome/Excuse Me/I’m Sorry
✓ Asks for help from others appropriately/offer help….

The list is much longer, and there are still plenty of things that need work. But just LOOK at those improvements! 

Sonisms

I will coin the word 'sonism': [suhn-iz-uhm] something my son says that makes me burst into laughter and be rendered useless as a parent who then determines she cannot punish him because the 'ism' was just too funny.


Example #1: DS likes to ride his scooter and park it up under the bar. Baby girl has shown him that it also doubles as a nice stool, which he can use to get into everything sitting ON the bar. It is automatic time out if you are caught standing on the scooter. So, tonight he was standing on said scooter and I had to ask him, 'What are you standing on?'
To which he responds, "The Promises, Mommy!" 


♫ Standing, standing..... standing on the Promises of God my Savior... ♫


Example #2:  I have been trying really hard to explain the difference between when his underwear is wet or dry. I have him touch them so that he can feel it and then we discuss. There is a LOT of potty talk around here lately. So, when he got up from nap, I asked a very normal question "what is in your underwear?". Usually the response is 'Nothing' or 'I don't know'.  Well, this particular day, I pushed him because I thought he had peed. I forgot to ask if he was wet or dry. So, when I asked, "What's in your underwear?" 
He responded, "My Butt"

Preschool Reflections....

Is it really almost October?  
[I started working on this post September 28] 


DS started preschool the first week of August. His first quarter is over. Today is our first day of track out and I have both my babies and nowhere to be for the first time since June 18th (I just looked it up). We had 'happy face' pancakes (among other healthier options) for breakfast, played, and just enjoyed our day. No major meltdowns by either child or myself. Both kids are gloriously SLEEPING at the moment.... and I am writing in my PJ's at 1 o'clock in the afternoon. I do not feel bad about this at all!


It has been interesting. 


For the first 4 weeks of school, each morning was a struggle to get him out of the car and into the school. I have to carry baby girl into the school too, and so when he tries to run away from me or lay on the ground instead of going in (its about a 20 yard walk) it is very hard for me to 'control' the situation. In the afternoons when I picked him up, he was sweaty, red faced, disheveled, and generally agitated. He only wanted to exit the school from one specific door. He couldn't handle if I was there before he left the playground. He refused to eat breakfast [in class] with the exception of a couple of mornings. And when I picked him up, he whined to me 'I want to go home'. 


12 kids are in his class. All have an IEP - yet I do believe they are a wonderfully diverse group of kids of whom MOST challenge him socially. I believe this is the #1 reason for all the anxiety. And it's a good reason. This is the first time he has been challenged in this type of environment. 


He did surprise me, though. In the past, it would take him several visits by a new therapist, etc.. before he showing ANY of his negative stereotyped behaviors or difficulties.  My prediction for school was that it would take him a couple of weeks to show anxiety and behavioral issues. It took all of ONE day. I guess 3 hours was enough.
I was told (multiple times, but mostly by his DT) as soon as he was challenged to do some things he couldn't master immediately or any sort of demand was placed on him, I would no longer be able to question the Autism and negative behaviors would ensue. That is and was and continues to be true. 


I have gone from constant questioning of whether the oddities of his development were explained by autism (prior to the IEP)... to a better understanding of autism in general... to a better understanding of my son, period. I listened all too many times to the tune of 'your child isn't severe enough for services' & 'autism, you're crazy' & 'he won't always be on the spectrum' & 'he's just smart'. 


Well - he is NONE of those things. He is wonderful, bright, awesome, intelligent, genius, beautiful, has autism, funny and ALSO has a future. There is no question. He is not the poster-child, especially a media born one... and there are certainly parents who deal with a lot more than we do... but I am making progress through the 5 stages of grief. I do not grieve my son. I grieve what I thought being a parent meant. It is a wonderful and horrible and eye opening experience. And it is necessary. It will eventually work it's way into my unwaivering knowledge that THIS is so much better than what I thought, but I'm not there quite yet... 


Denial: believing that he would somehow jump himself right off the spectrum after we fixed him. 


Anger: I'm not an angry person, so I believe this to have played out in my anger towards those who wouldn't believe me and didn't support us. 


Bargaining: What therapy, what is perfect, what can I do to get him off this spectrum. What will fix it? Is it autism, is it hyperlexia, what best explains away everything? maybe it was birth trauma... maybe we're wrong... maybe if I tell no one, it'll go away...


Depression: .....for me I think manifests in my sadness when the differences between Neurotypical and ASD stare me blankly in the face. These moments come and go. I think it's normal. I think it's a process that has to happen. I don't like it. 


Acceptance:  not there yet

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

...back to preschool

At the same time he was pent up with anxiety from all the work at school... he was doing new things at home. During this first quarter I was happy to post quite a few successes and awesome things happening with him. There were certainly others - new words - new questions - a new level of play with his sister - some potty success... etc. And I was SO confused. 


How is it that he is so ridden with anxiety after a day at school, but for the first time EVER finds the words to ask me to snuggle with him and hold him? How is he doing so BAD and so GOOD? 
One call to Suzanne helped to explain. He IS learning some really important stuff at school, but it IS really hard. So, it's both. And there lies the behavioral stuff that has surfaced. 


At one time I might have told you that we are just beyond PECS and a lot of intervention techniques that a lot of other kids need. But, what I have found is that there is a really fine line between being supportive and asking too much of him. So, we went back to some more basic supports.


I am still trying really hard to figure out that line most days... but we have implemented a potty PECS routine and a hand washing PECS routine in the bathroom to help him be more independent as he works through the steps. It also helps mom keep her sanity so I don't have to pick a fight over putting pants back on (or whatever it is that he decides that he's not going to do) constantly. 


When the first 4 weeks of school were done, he really loosened up. He is still very challenged, but more directable. Some changes over the quarter:
Once aloof during rug-playtime (usually up staring at the room calendar) - he is now attending to parallel play for an increasing amounts of time. 


He is wearing undies to school on a regular basis. He is not bowel trained in any capacity, and is fully prompted to toilet, but it's an improvement. 
Much improved demeanor during school and when I pick him up. More often than not, he started telling me that he didn't want to leave school. 


[fast-forward to Oct 25]
His 3 week break is over. We've completed his first week back to school. This has been the best week yet!!! I am so happy to report that he acts as if he really missed being there. He has communicated well, played well, and listened well. He does have some of that anxiety back that he didn't have (shrugging shoulders) before, but he is also challenged in his classroom again. I think it's working.