Saturday, February 25, 2012

As His World Turns

A little fun-

Red is telling me about a teacher who used to "yell" at him.  Anyone who corrects him and has expectations from him in his eyes, they are "yelling".  This teacher who he is referring to is one who is not known for being the yelling kind.
I say to him, "Honey, you would make Jesus Christ himself yell.  Help me father! I don't know what to do with this boy!  He just will not listen!"
"That's not funny Mom!" he says. 

Actually, it's very funny...and probably true.  I can picture Jesus throwing his hands up to his heavenly father, looking all confused.  I wish I could draw a little cartoon.
We have a very busy day planned.  First we have his neurology results appointment.  As it turns out, Red is doing so much better.  His blood work looks better, platelets are up.  His EEG was normal.  The medication seems to be working.  The depression is markedly better and so is his attitude...especially, at school.  He is not complaining at school, is compliant and much more social.  He is not as fatigued.  He is getting up in the morning with relative ease and getting ready for the bus everyday, on-time! (MAJOR).  

Unfortunately, the cognitive testing is disappointing.  His percentiles are low, but mostly due to slow processing.  The tests were all timed.  What he completed, he scored 98% on average.  The problem is he would only complete 50 to 60% of the questions due to slow processing.  Even though this is's good information to have, to understand where he is, how he learns and what we need to do to make things better.  He will need the academic accommodation of 1 1/2 times to complete work and tests.  

The Neurologist recommends that he improve his diet, by eating more protein and vegetables and less carbs.  (No surprise here...shouldn't we all do that?)   He also recommends that he get involved in sports activity to help rapid action in his brain.  More movement will stimulate his brain to get used to moving and reacting faster.   I am going to have the school do an OT (occupational therapy) evaluation to see if we can implement some of this rapid action into his school day.  We also will be signing him up again for swimming.  

When we are finally done with our appointment, we are both starved.  I only had time for coffee and we spent more time than anticipated in the doctors office.  We go to his favorite restaurant for lunch after the appointment.  Red would be satisfied with a fast food hamburger, but I want a healthier choice.  I've got terriyaki salmon on the brain.  We sit down to order and he is wearing the frowning face, which I'm sure he isn't even aware of.  I remind him that we are in his favorite restaurant.  
"Would you sit up and take that scowl off of your face?" (Don't I sound like a mom? Geez...who is this woman?) 
"What are you thinking about?" I ask...kind of afraid of the answer.  

He goes into his latest dialog about developing his business and making money.  He asks me the same questions, that I don't have answers to over and over again.  

He tells me he doesn't want to go back to school after lunch.  We have a meeting.  We are definitely going.  At least he won't be in class.  We order dessert...his favorite, Pizookie (white chocolate macadamia) warm cookie with vanilla ice cream on top.  He is actually willing to share with me as long as I promise not to eat more than him, which would virtually be impossible.  This is also an improvement.  A few months ago we almost came to blows over dessert that he didn't want to share.

The meeting is the follow up 2nd half of his VISIT (transition planning) meeting.  I don't know how we got so lucky to have the head Transition Coordinator in our school district to not only do our transition meeting, but she also does Person Centered Planning meetings with Red once monthly to help him work on personal goal setting and achievement.  Hallelujah! Thank you Jesus! 

The meeting is highly productive, very visual and motivating.  We talk about where he is now, where he wants to go throughout his high school years, and what supports that we anticipate him needing after high school.  The district will provide support services for him through age 22 as needed to help him transition into work and independent living! (Hallelujah one more time!) His vocational teacher, the School Psychologist, Special Ed. Lead and Special Ed. tracking teacher are all in attendance.  

Red has apparently made great improvements since he's been at the new high school and even in his vocational classes there is improvement.  We put together data in black and white among other colors, to paint a picture of where he is, and what he needs in order to get to where he wants to be.  Mrs. Wonderful, the Transition Coordinator, is encouraging him to start to take control of his own life and to stop leaning on me so much.  (Yeah, he's getting pretty heavy.)  We put together direct goals of social-emotional, and self-care that he should be doing for himself, including chores and planning his own free-time.  He was open and participated very well, once he warmed up. He always enters the room like he's going into a torture chamber.

He comes home after our meeting, and watches a DVD that Mrs. W- loaned him entitled, "The Next Step -Failure is Not an Option." The video was actually put together by a young man with the same goal as Red --video editing.  Red was really encouraged by all of the stories of these individuals with various disabilities who did not allow that to stop them from becoming successful in life and completing their education.

He has a tendency to play the, "Woe is me! I have Aspergers, so I can't do it.  It's too hard," card.

I think the whole idea of transitioning into adulthood scares the crap out of him.  He has so much work to do to get there.  He's afraid that it will be too hard.  That he he won't have any support.  The truth of the matter is that he will.  He will have the support of our school district and many other state and federal programs for people with disabilities.  He will always have our love and support.  Someday, I want him to be a man --to stand on his own two feet and use his gifts and abilities to take care of himself.  This will take a lot of work, time and patience.  And we will be there for him all the way. 

This is one of the best days I have spent with Red, in recent history.  We were together from sun up to sun down and he didn't drive me totally bananas!  I pray that there are many more days like this to come.  They are golden.