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.