Sunday, September 30, 2012

The Leader & Noah

Here are some pictures of the soccer practice the other day.....Noah is the small one in the purple shirt!

Noah and "the leader" that is the coach's title....The Leader.  Who else is talented enough to play soccer with his hands behind his back? Hmmmm Nobody I know.

Huddle Up!!!  Looks who is in the middle giving directions....who is the smallest on there?  All the guys make a big fuss over him he LOVES it!

Wow personal instruction from "the Leader"  he won't kick the ball very hard, however KUDOS to him he did make a GOAL!!

UH OH~ what now.... here comes "The Leader" for some more 1 on 1 time with the boy!!
All in all Noah LOVES it he doesn't know that he one of two little guys, he doesn't see size, color or disability! I WISH WE COULD ALL SEE THE WORLD THAT WAY!

Friday, September 28, 2012

Center of Attention.....

After we finished soccer practice last night from 6-7, one of our local colleges has a Special Olympics night where their students work with the athletes...after soccer we drove there most everyone who was at soccer went.  We get there the college's volleyball teams are there our athletes are working on volleyball tonight.  When we get in one of the moms had already picked out Noah's "personal assistant" they hit it off well.  I got to sit with two more parents and chit chat YES chit chat I didn't know I still knew how.....seems like I am ALWAYS explaining autism, sensory processing disorder, ADHD you know!!  the usual stuff!!

One of the parents said, "look Noah has an audience" I turned to look he was sitting on the bleachers with 6 college guys standing there looking at him and he was just talking up a storm....when I looked closer I saw about 6 volleyballs where your feet go on the bleachers...he was telling those guys something about all the balls.  A few minutes later a look up again and one of the guys is carrying Noah around on his shoulders WOW this kid was eating up all this attention!!  Because you know I NEVER pay any attention to him LOL!

I got to be time to leave the social butterfly wants to go around the entire gym and hug everyone, I know I need to work on appropriate behaviors some more, so I limited him to the 10 people by the door.  So with that being said we finally got to leave............but not before his announcement he said LOUDLY, "I will see you all next week!" they laughed and were all saying bye Noah.

Saturday, September 22, 2012

Wonder What He Was Saying.....

Soccer practice number 2 in the books.....he did pretty good~still likes that hole to sit in and look for bugs! LOL Today there were quite a few more people than the last practice!! There is a man that comes, Andy and his nephew,the brown boy (he's 4 & typical).

Andy is deaf and uses sign language to communicate his 4 year old nephew knows sign language too. Anyway Noah is just talking Andy's head off and Andy starts to sign Noah's not sure whats he's doing. The brown boy sees what's happening and get between them and is translating for Noah AWESOME. So the players head over for a break to get some water I am explaining to Noah that Andy is deaf that means he can't hear, and he uses his hands to speak. Noah says, "he cannot speak" I reply, "no he speaks with his hands".

So the players head back to the soccer field, Noah is being Noah socializing instead of playing, he is over with Andy he starts signing to Noah, the brown boy was at the other end of the field so Noah starts "signing" back he was just moving his hands and fingers.....wonder what he was saying. I was SO funny. Guess what?? We are going to start learning sign language next week.

Friday, September 21, 2012

Team Sports...Is he Ready???

Well we did it~he went to soccer practice last night....I called Special Olympics and got him set up.  We watched YouTube videos of kids playing soccer, we viewed some PECS about playing soccer.  I am trying to explaining the role of the coach, so I said, "you have to listen to the coach, just like you listen to me when I am teaching you."  Noah responds, "So he's the leader."  I say, "I guess you could say that but usually you call him coach."  Noah, " He is the leader right??"  Me, "Yeah"  Noah, "OK then he is the leader."  in other words period END OF CONVERSATION.  I don't know maybe he called him "The Leader" instead of Coach.

The Coach got stuck in traffic so when we got there the director of our chapter of Special Olympics was there, super lady very personable.  So she got them to run 2 laps around the field, Noah took off like a shot...looking behind him as he ran approaching an iron fence, but one of the guys said something and he turned around just in time.  So he was leading the pack at one time then slowly drifted back to the back of the pack- then he would shoot up to the front again.  It was pretty comical when he runs he is all over the place, arms flapping, he looks like he has no upper body control.

So the coach arrives, Noah sees him getting the bag of balls out of his car, and runs to him, says something and grabs the giant bag of balls and heads to the field.   WOW I never saw that one coming.  He tends to find a comfort zone wherever we go if we are there for any length of time and last night was no exception.  There was a "hole" I never went over there but I think it was like a drainage grate or something.  Anyway that was to be his "spot".  He would kinda wander away to the "hole" and just sit there.  Once I was about to get up and go see about him and the director told he to just have a seat Coach would get him and he did.  Noah did so good, the boys were older, there was one little fella 4 years old (He is typical came with a family member) him & Noah hit off, they were kicking the ball to each other.  He called him the brown boy I love it!!!

We were invited to several upcoming events, it was a really good experience for Noah and opportunity for both of us to make some friends.

Friday, September 14, 2012

The STX209 Experience

For those that have read my blog and kept up with our progress thank you for those just discovering my blog  welcome to our journey in the Wild World of Autism.  We are in a clinical trial at Vanderbilt Children's Hospital, the clinical name of the medicine is STX209 I think it sounds cool all futuristic and all....Autism Speaks is funding the trial.  It's the FIRST medicine known to treat core symptoms of autism.

When we joined the trial last year in the latter part of October things in our home were not good this same time last year, frankly it sucked.  Noah was out of control, I mean hitting, kicking, pushing, biting it was really bad.  He could not walk into the room without hitting his sister.  We went to his doctor and we tried to get in to see any psychiatrist that took our insurance, I was DESPERATE, I couldn't get in anywhere.  I had even called Vanderbilt and was out on a wait list there too, was told that they saw kids based on the severity of the disability and they focused on early intervention.  So basically we were screwed.

I was at my wits end and there really appeared to be no hope of getting him in to see somebody anytime soon.  We home school, so that is good because I am not sure how the school would have handled his behavior.  So I was checking my email and there it was the email that changed our lives.  Who would have thought things were changing for us.  I went to hubby told him about the clinical trial, the email said it was looking to improve social skills in individuals with autism HMMM.  So we decided I should call, they gave me a brief questionnaire on the phone.  Called my back the next day and set an appointment, I explained that we lived in Memphis and would be driving to Nashville, oh no problem we will make a reservation for you so we stay at the Holiday Inn Vanderbilt and they even reimburse for mileage!

So the study required us to take him up by 5 mg increments until we hit 30 mg a day, it was a placebo based trial in other words he may be on the medicine or h may be on the placebo, we started seeing changes in him when we hit the 20 mg mark.  The first visit the blood draw resulted in a HUGE meltdown, now he sits there and just watches them do it...he even reminded them one time that they forgot to "Steal his blood" as he calls it.  The changes we started to see was the acquisition of more language, improvement in social skills, less aggression, cognitive improvements across the board, trying new foods, behavior improvements, reading alot more.  I have explained it like an old TV with knobs, the contrast knob that cleared up the fuzziness that's what STX209 does it clears up the fuzziness and allows them to make connections with the environment that they did not previously have.

So FIRST'S this year dentist appointment & cleaning (without having to hold him down), swimming he just started swimming, we went to our 1st movie Madagascar 3, we went to church, he tries all different foods appetite increase, 1st time he went to the fair, I am sure that I missed something.  It has been an INCREDIBLE year for us as a family, and the best is yet to come................

Our AU-some Social Security Encounter

If you receive SSI benefits you know how difficult it can be to obtain benefits for anyone that has a disability.  We started back in March of this year, WOW it is a lot of paperwork, dates and times of everything that your child has went through or done.  It took me several days just to complete the application.  I sent copies of EVERYTHING I had about Noah and autism.  I did everything they asked me too, showed up on time never rescheduled an appointment, I had heard that Social Security's caseload it was taking over a year to get approved UHG.

So two weeks ago I get  a letter on Tuesday telling me to go to the SS office here in Memphis by Friday, the letter was addressed to Noah, so I thought I had to being him.  We got there Thursday afternoon and met Ms B, she was handling our case.  She asked if I had husband pay stubs since March, I did not the letter said BRING THE LETTER.  She looked through my application to see if I needed anything else, she wanted a statement of Noah's savings account so she would know where to the money.  I said, "Send the money???" and then she said those 4 great words, "you have been approved" I could not believe it.  My application was the most complete application she had ever seen.  She needed pay stubs to determine the monthly amount of Noah's benefit

The next day I took her the info she needed, she called that afternoon said she had it all put in they owed him X amount of money in back pay that would be deposited immediately (1/2 of it), and his monthly benefit was XX amount.  I could not speak I thought it would be around $100 a month I was WRONG it was much more than that.  It is based on your income so every one's will be different.

Thanks to the awesomeness of one lady who truly made a difference at the Social Security Office!!

Tuesday, September 4, 2012

He's Licking WHAT????

My husband LOVES to cookout an have friends over which is great because if not for him I would never have anyone over. So our friends from the neighborhood our neighorhood is quite different from most, it was going down the toilet and THEN a clinic came into our area of town and the doctors that work there moved into the neighborhood YEAH!!!   So at our little party we had a fireman, 2 doctors, 2 in doctor school & a dentist COOL.

Noah is outside with us just messing around I look over and Noah is licking the concrete!  YES licking the concrete. So I said, "Noah stop licking the concrete!" that's just normal for us right, well everybody looked over and I think they were stunned for a second but then they laughed. So then we got to enlighten them on other "autism stuff". Like don't lick the iPad, why is your foot in the toilet, why you HAVE to wait in the bathroom after you flush till the water in the toilet comes up, the tub is his boat and it must be dry after every shower or bath,  and I could go on and on.

All in all it was a great cookout and we had a lot of fun, we made some new friends, one was a young a lady she is a pediatrician, I think we are going to get together and bake for the Halloween party I am planning!!