12.15.2009

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.

12 comments:

Laura said...

okay, E is a DOLL. Love the video! As for the air-writing, I'm of the "let it be" mindset, but obv I'm just a random internet person. Just my two cents. As for the psychologist, I'm glad she validated your concerns, but I'm still skeptical - not of his ASD dx, but of a psychologist's ability to understand autism, since autism at its core is a neurological and biological (not psychological) condition. My two cents.

Queenbuv3 said...

I'm glad to hear that you are feeling better about things. However, I still think there should not be any attempt to stop the stimming unless there is a safety issue. Example, my son loves to take little objects, a bunch and throw them up in the air to see them fall. This can be a safety issue if they are hard or pointy or whatever. So we had given him a basket of soft things that he could do that with and he can do it in his room where there isn't anything that he can potentially break if they get tossed too vigorously. Designating an appropriate spot like his room is a good idea. And once he starts school, having several times throughout the day where he is allowed to stimm will help him with regulating himeself. I really think you should get a sensory eval done to figure out why he might be doing some of these things and figure out safe and appropriate ways for him to get his sensory needs met so he is able to regulate better which will help him function when he needs to do daily tasks, pay attention, sit for long periods, etc.

We actually took that basket and used it to hold the cat toys after he had the basket in his room for a year and wasn't using it. Well, this morning he took all the cat toys out of it and starting tossing them. I actually shot a video, you have inspired me to start documenting his various behavoirs, of him doing that this morning. He had only been doing it for couple minutes when I asked him to clean up. He did. **Check out my post from today it has the video in it.

My son has a lot of ways that he stimms. But when he needs to do work at school or needs to take a shower, go somewhere, etc. he stops.

When Stephen was your son's age he stimmed a lot more. I think your son's age needs to be taken into account and his ability to express his anxiety and the level of coping skills he has. Most 3 year-olds don't yet have a good ability to deal with emotions. I think you need to keep in mind that even though your son has some diagnosed issues he is also a 3 year-old and you need to make sure you are looking at where most 3 year-olds are at. When our son was little we assumed everything he did was because of his Autism. When we had our daughter we realized that many of the things he did were just normal stages of development.

I agree with Laura that a psychologist is probably not the best person to consult about his behavoirs. Just my two cents also.

Hope this helps.

A little boy just 3 years old said...

I am a bit surprised at both of your opinions... but we are here on the WWW and all opinions are welcome. My purpose for this blog has always been to have a place to sort my thoughts so that I can look back and see where we've been. If I don't document, then I will just forget.

To quote Queenbuv, "Designating an appropriate spot like his room is a good idea. And once he starts school, having several times throughout the day where he is allowed to stimm will help him with regulating himeself. I really think you should get a sensory eval done to figure out why he might be doing some of these things and figure out safe and appropriate ways for him to get his sensory needs met so he is able to regulate better which will help him function when he needs to do daily tasks, pay attention, sit for long periods, etc."

How is what we're doing any different from this?

It has been a while since I posted about our quest for an OT evaluation. He was evaluated and has a lot of sensory issues. His EXCELLENT OT referred us to a psychologist because there is quite a bit of his behavior that she felt was not w/in the realm of an OT anymore.

The air writing CAN be a stim, but I also believe that this behavior escalates when he is experiencing more anxiety. Then, further than that, I think it becomes a habitual thing he does when left to just write and write and write.

My goal is not to STOP it totally, but would like him to be able to stop on his own. He needs some coping skills that are more appropriate. If he can learn some other strategies....that would be awesome, now dont you think?

I don't allow my kids to dictate when they stop drinking juice and I feel the same way about this behavior. If they want some juice, sure. Is there a time and place? Sure is. I know that's not exactly the same... but I think that I do know how to help him better than he knows to help himself sometimes. And if I dont teach him, who will? It doesn't mean I'm going to CHANGE him... it means I'm here to help.

A little boy just 3 years old said...

On the Psychologist as appropriate or not? Really???

Yes, Autism is neurological. But, how many of the interventions - SLP, OT, DT, ABA, etc.... are NOT aimed at changing the neurological structure of his brain?

His neurologist took an MRI, looked at his EEG and said 'Yep'. No help there.

I think saying that a Psychologist [who by the way specializes in ASD and DD] can't know what she's talking about just because she's a psychologist is a little too broad, given the other types of therapists we let into our lives.

Any professional who seems to understand what Im saying about my boy and can join with me to help him live in this world is welcome.

There are quite a few things I think are QUACK.... but when she recommends Social Stories, PECS, transitional methods, and anxiety reducing measures (deep breathing)... Im all ears.

Queenbuv3 said...

I'm so sorry if I am making you feel attcked. That is definitely not my intention at all. Anyone can clearly see from all the effort and the way you talk positively about your son that you are doing everything you can for him because you love him and want to help him.

When my son was diagnosed at 18 months, there weren't people blogging about their experiences with Autism, it wasn't in the media as much as it is now. We had very few resources for information or support from more experienced parents.

I am just trying to present you with a perspective that you might not otherwise come into contact with. I know that every child is different and am not suggesting that you should do everything I have done with my child. I think it is important to consider all options when trying to make a decision. MOst of the media and blog attention about Autism is that it is a tragedy and needs to be cured. I am just trying to present another perspective that shows that life with an Autistic child is not horrible and that they have a lot of positive qualities that are not usually emphasized in the media and on the internet.

You definetley know your son better than anyone and you should do what you think is right for him. I hope that you can look at my comments as just another option or opinion that is intended to help you make your own decision.

I worry that so much emphasis has been put on that magic window of "birth-5 years old" that parents of children with Autism feel like if they don't "cure" every issue their child has by the time they are 5 that it will be too late and their child will never learn or grow after that age. I hope that you are not feeling that pressure.

All of my comments come from the heart and are intended to help others and not hurt them.

Queenbuv3 said...

I need to correct something. They have several times a day at school for sensory activities, they don's schedule stimming per se. They don't stop him from stimming. He is allowed to stimm and automatically stops if he needs to do work. Or if he can do both, like moving his hand in front of his face, than he is allowed to. Some of the sensory things he does that are scheduled at school are stimming some are just for sensory input. We also don't stop him from stimming at home. But some things are delegated to his room for noise, safety or other reasons. We and the school do not focus on stimming as a problem.

Actually, a big problem for him is his obsession with books. If he wants a book, anywhere in the school, and he can't have it, it can cause a serious tantrum. That definetly interferes with his learning at school.

A little boy just 3 years old said...

I didn't actually mean to sound attacked.... I was responding quickly with 2 little ones running around ;) Flaws of the online world.

I think my picture of our reward system wasn't explained well in the original post. 'Stopping' the stimming is actually built around helping him to be able to stop himself because at the moment he can't stop until he's finished. It interferes with life. Not stopping completely.

We haven't really addressed his perfection issues yet either. We'll see what happens with that (reminds me of what you're saying with your son and books)

The only push I feel is that once he's older, he'll start to understand he's 'different'. Now, I love it all. I love him. But there's only so much time that a kid is blind to it. I would rather address everything we can now, so that the invasion of every-little-thing (like my list of OT, SLP, GI, blood test, craniofacial, etc..etc..) is not so obvious to him later on. Make sense? I KNOW everything will take time.

I personally know 2 teenagers on the spectrum who are daily upset at their differences. They know they are different. We'd have to live in a totally different world for them to not feel that way. Too bad mom's can't make THAT go away! I just don't want to ADD to that later on. kwim?

Laura said...

I don't think you're doing anything wrong at all. You are an amazing mother, and E is doing so well! My skepticism about psychology is not unique. A lot of people are starting to question what role a psychologist should play. At LADDERS, the autism center near me, they have developmental pedis, neuros and GI docs on staff, but not one psychologist. Which is great if you live near LADDERS, but not so great if you don't have access to a center like that. Anyway, sorry for rambling, and so so sorry if I hit a nerve.

Nyx said...

I think Laura's right that a psychologist may tend to be working with a not quite right model these days, but I would add that you know your son better than anyone, and if your instinct is that his problem is anxiety, then I think you should listen to that instinct. There is a lot of anxiety in my family and my husband's, and I think it is relevant to our children's behaviors. I think there are a lot of different things that a person can do to reduce anxiety and maybe focusing on that would really help you. It certainly never hurts to reduce anxiety! Hard exercise and hard laughter have both helped me and mine. Also, a fair dose of quiet. Noisy busy environments, trains, etc. make me jittery.

A little boy just 3 years old said...

Eh. No worries ladies. I wish there were ONE professional.... and his/her title would be 'Autism Expert' and they would be the one end all person to go to. That'd clear up these blurry lines, right?

A little boy just 3 years old said...

Oh, and my nerves are very exposed this week.... seems to be coming out in my posts ;)

Nyx said...

You might not be very interested, but ever since reading your posts about the air-writing I've just been thinking more about gamma waves and how it all fits together ... anyhow, I decided to see if I could start my own blog as a place to kind of think out loud about it (and maybe see if anyone else understands more about this stuff?). If you're interested, it's here: http://regardingautism.blogspot.com/.