12.10.2009

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.

6 comments:

Anonymous said...

It is hard, yes. But you've got God, a positive attitude and a good team working with you and your son.

It's going to be okay.

Brenda Rothman (Mama Be Good) said...

Big, big hugs. These meetings are so devastating. Jack is a little older, so let me offer my experience. Definitely, the "preoccupations" (obsessions) if you will became more intense and more focused from 3 years old until 5. We haven't passed 5 yet, but other moms tell me it gets easier as they get older. So I've heard these years (3-5 and I'm not sure how much older) are the hardest as far as the obsessive behavior.

We played games with it and chose not to make it a source of more anxiety. (Play therapy). We also wanted to make sure he stayed engaged more with us than isolated. It's still there, BUT he usually stays engaged with us during his obsession play (unless he's really stressed like at Halloween).

Big, big hugs for getting through these days. If you need anything, shoulder right here.

Queenbuv3 said...

He is stimming. Does he have a diagnosis of Autism? If you try to stop the stimming it will get worse. We did ABA with our son when he was little and they did not allow stimming. He became horribly violent during this time period. High functioning people with Autism say that their repetitive and ritualistic behavoirs help them block out things that irritate or overstimulate them, noises, sensations, etc. It can also be an expression of anxiety. They also are obsessive with their favorite things which I think there is no harm in.

He is probably doing these things in an attempt to regulate stimulation. You might want to consider taking him for a sensory eval with an OT and get him into a sensory diet. Meds are a pretty extreme solution at his age.

It also stems from anxiety and if your son has limited communication skills it might be a way for him to communicate his anxiety. My son gets very stimmie when he is upset or anxious because he doesn't have the verbal skills to tell us that something is upsetting to him. If your son is medicated he might not be able to communicate his feelings through his behavior and still won't have the words to tell you.

Keep in mind that his other more functional skills will develop as he ages unless he is unable to progress because of an intellectual disability (old term that I hate-mental retardation). My son still stimms a lot but is able to do his academic work at school and has many self care skills. He is able stop stimming on his own when he needs to do things. Some things he needs to do he does while stimming.

This is my opinion from my experience with my son who is 11. I'm not trying to tell you what to do because every child is different but figured it might be helpful to present my opinion. Also, my son has been evaluated twice by a Psychologist at 18 months when he was diagnosed with Autism and in school. They have never given us any useful information.

Good luck and keep us posted.

Laura said...

Oh my.

really? OCD? Age 3? A child whose ritualistic behavior manifests as hyperlexia? Drugs? Really????

Sorry, just reacting.

My husband has OCD and it didn't onset until teens. Although I just googled it and in 30% of cases it starts in early childhood. Have you ever seen the show "Obsessed"? One week, they featured a dude who is OCD and asperger's, but OCD is really his issue in terms of his ability to function. It was fascinating.

Laura said...

ps the dude on Obsessed was married with children, and a genuis, for what it's worth. But he goes to the gym something like 13 times a day. :-(

A little boy just 3 years old said...

She isn't thinking he has OCD. At least not yet. The comparison was to show me that even ONE hour a day can be impairing...

The best measure SHE has to look at is that his cognitive level is above the 98%, his adaptive level is in the 16%. She is concerned that the interruption in EVERYTHING he does (riding a scooter, playing cars, reading, singing, cooking, etc...) to write w/his hands could be the interference that is causing that HUGE gap. I know that the ASD can be at the root of all this, but this is the SINGLE area that is problematic for us, his peers, the future, and ultimately him.

The writing is 99% numbers. Not words. When he READS (aka Hyperlexia) he is calm.

Example: goes down the slide, "I win $2,000" (write: $2,000). Scrunched face, raised shoulders, tense arms/torso, and using right hand - index/middle finger to mark very intensely in the air. Stop. Go slide again.

Does that make sense?

Fact: his anxiety is worse
Fact: his behaviors are tense and uncomfortable looking
He also seems to be causing more anxiety as this progresses. He doesn't step out and back in... he gets MORE intense and MORE intense if you let him at it. I'm going to try to capture a video today in hopes someone else experiences this.

I am very on board with her to try and figure out once and for all WHY he has the behaviors. Is it pleasurable? Is it not? Is it stimming? Is it calming? Is it FOR the writing? Is it....... (fill in blank)?

Meds are an option if the root is anxiety. If anxiety is CAUSING these behaviors and forcing MORE anxiety (which is what I think I see happening) then she thinks that it might be a good match to try and relieve a little anxiety for him to allow a decrease in the behaviors.

Whew. It's complicated.