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.
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.
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?
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.
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 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.
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.
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.
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.
✓ 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!
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"
[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
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.
MRI is normal. EEG is abnormal. Nothing physically wrong, but neurologically, his right temporal lobe has periods of lower functioning. She said the 'slowing' w/o physical evidence of damage [via MRI] shows her that he basically is at a higher risk of seizure, but no guarantee & it more likely just paints a picture of what we already know. Some of the difficulties of Rt temporal lobe dysfunction would include: 1) disturbance of auditory sensation and perception, 2) disturbance of selective attention of auditory and visual input, 3) disorders of visual perception, 4) impaired organization and categorization of verbal material, 5) disturbance of language comprehension, 6) impaired long-term memory, 7) altered personality and affective behavior
Hey. That fits.
I really loved the neuro. She explained everything in plain language. Did a thorough exam, and took time for us to explain 2 situations in which we felt he really may have had a seizure. She agreed they concerned her, but since she doesn't see permanent damage, she won't be interested in a longer (48 hour) EEG unless he has another episode that is concerning including no arousal from physical touch. That all made me feel better.
And, to top the cake with a cherry, she is very interested in further autism research and will keep his 'case' open in the event there are any breakthroughs with research pertaining to genetics, brain studies, etc... She said that if they find out anything groundbreaking in the near future, they likely have all the info they need, and just don't know to look at it. So they would use existing data first.
The last thing she is going to do is get the genetics testing back from that hospital and make sure they did/found what she would have sent out for. Since he had ear tags, they look to see if there was any genetic reason for him to have a mutation.
Sounds thorough to me. She put to rest some of my questions including the possibility of brain damage from birth via vacuum. She said his brain is HEALTHY as it can be and there is no sign of ANY damage of ANY type from fall, bump, etc..