Saturday, February 20, 2010

Temple Grandin

I had the opportunity two weeks ago to watch the HBO movie Temple Grandin, based on the life of an autistic woman who was diagnosed with the disorder in the 1960's, when it was more popular to institutionalize these children then intervene.

I had the honor of watching this movie with my son Chandler- who, throughout the movie made statements like, "Daddy, that's how I feel," or "that's how I see things."

It was a true learning experience for our family. I encourage anyone who has a child on the spectrum to watch this great movie. It is inspiring and educational.

Recently Temple visited with the people at PSU, and this interview is amazing. It is lengthy, but I couldn't turn it off. It really offers insight from someone who can articulate what having this disorder is like.

It can be found here: http://conversations.psu.edu/episodes/temple_grandin

I would recommend sharing this with anyone who is not educated about the Spectrum - or parents who are just starting on this journey.

Thursday, February 18, 2010

Pants and Shoes!

I would like to start this by saying this doesn't happen every day - but it does.

"My Pants HURT!!!!," screams Chandler from his upstairs bedroom.

"My shoelaces are crooked," yells Spencer after putting on his new light up Spiderman shoes.

Any efforts to assist with the problem cause further blow ups and issues.

I don't fully understand the sensory issues that come with Asperger's.

Chandler has about 40 pairs of pants. On any given day, one type of pant is good, and all of the others can just be thrown away. Pants that were perfect yesterday no longer work for him, and the battle in the morning begins, usually around 7:15.

About a year ago, Spencer was infatuated with the color green. Everything had to be green - so we stopped what we were doing, found some very hard to find Green Nike shoes, to which he wore for about three days before everything had to be blue.

We have to hold our sleeves when we put our coats on, because if the sleeve bunches in the coat sleeve - the day ends right there. Socks have to be seamless or the seams have to be aligned perfectly with the top of their toes, or you have just wasted the fifteen minutes it took you to convince them that it's okay to wear socks.

Last night my wife took Chandler to buy some new jeans. He didn't need the jeans, but there was a good sale, and he has been in "jeans mode" lately - so they went to the mall and picked out a couple pairs of pants.

Something happened between last night and this morning that caused the same pair of pants that worked last night to no longer be a suitable option for Chandler. He started the day by screaming at both of us about it.

I have to admit, I raised my voice at him, partly because I was frustrated, but mostly because he could not hear me over his yelling and screaming. After five minutes of yelling at me, he looked at me and SCREAMED: "DON'T YELL AT ME!"

Honestly that didn't help how I was feeling about the situation. I am a little OCD myself, and one of the things I am obsessive about is being late. I can't be late anywhere. I hate it. His tirade was going to make him late for school, and leave me in the office to explain why he was late, although now the nice women who work in the office understand the word "meltdown."

I never handle these situations very well, because I don't yet fully understand it. Maybe I never will. There are days that I am better with the boys in the morning than others, today wasn't one of those days.

I finally decided to help where I could and allow them to try and figure this out on their own. Chandler found pants that he wanted to wear, and Spencer was fine with his shoes after about a half hour. Then we had to battle the "I don't want to go to school," issue - but that's a topic for another day.

As someone who is an analytical thinker and a problem solver, it's hard for me to not understand what my boys go through everyday with something as easy as pants and shoes. This is one area of growth that I absolutely need help with. I never approach it the right way, and maybe because of the disorder there is no right answer. Maybe the answer is I need to be more flexible and understand that we might have to go through 39 other pairs of pants before we find the right one for the day - and tomorrow, all of the ones that didn't work yesterday might be perfect.

My next post will be about squeezing tight - it really does work.

Cory Howerton

Sunday, February 14, 2010

Away From Home

I travel a lot for business, so whenever possible, I like them to join me on various trips. This weekend, we were fortunate enough to only be two hours from home, and they kids are out of school on Monday - so we made it a family weekend in a Chicago suburb.

It was a tough weekend.

It seemed that Chandler had a meltdown at every turn and Spencer decided to join him.

On any given day, one of them might be frustrated, upset, or melting down. Rarely do we have the pleasure of both of them doing it at the same time, let alone all weekend.

My wife reminded me a number of times this weekend that we live in their world. This is something I talk about a lot, but when you're in the moment, it's hard to remember.

What I found most frustrating was when there was an issue - and there were many - we were able to provide solutions to the problem that make perfect sense to you and I. But simply stating the solution to an autistic child is sometimes useless. I found that when they were rejecting the solutions, I was getting frustrated - no mad - because they would not listen to reason.

I need to be more patient. It is only through patience and understanding that I will truly be a good father to these amazing boys. I learned something this weekend, even if it was frustrating and even maddening. I am grateful for the lessons learned during a long weekend away from home.

Cory Howerton

Wednesday, February 10, 2010

Different - Not Less

Progress Not Perfection

It's never going to be perfect.

As a profession, I consult major and minor league sports teams on a variety of disciplines - ticket and sponsorship sales, game operations, staffing, etc.

I was in a meeting last week with one client and we were talking about game operations and the mistakes that are made throughout a two and a half hour block of time, where there are many variables to the "show". It's not like a Disney show, or another traveling performance that does the same thing, night in and night out for 150 dates in 60 different cities. The professional sports experience - if it's a good one - changes from game to game, and every night there is a mistake made.

The key to a successful event is - do the fans notice?

I shared with this team that there would never be a "perfect show". It might be as simple as a member of the dance teams misses a step, or something as dramatic as a microphone not working or the lights not coming back on after introductions.

The idea is to make progress every night- the next show is better than the last, we learn from our experiences and build upon them for success.

The same goes for my two boys.

I mentioned in my previous post that I felt the teachers were holding Chandler back. They were giving him milestones to hit, and when he would accomplish those goals, he would not be met with reward, but rather more objectives.

During subsequent conversations with the school staff, they conveyed to me that they were looking for Chandler to accomplish these tasks perfectly (or close to it), and he was not meeting those expectations, and thus they were slowing his integration.

There are many problems with this stance, but the most important thing to note here is none of the issues were academic, but rather they were more about social interaction.

Chandler does much better in social situations when he is around children who are well behaved. He tends to follow before he leads, so when he sees bad behavior, he emulates it. When others are being good, he follows suit there too.

Since he was not being integrated, he continued to emulate the behavior of the other kids in the B.D. room. One time, another kid hit Chandler, and when Chandler responded in kind, he was punished, and he could not understand why.

I shared with them that with children on the Autism spectrum, we needed to strive for progress every day, but to never expect perfection. Chandler is and emotional but driven young man. He wants more than anything to be integrated full time into his general education classroom, and he doesn't feel like he is getting a chance.

With Autistic children, if you give them a goal and they achieve it - you MUST then give them the promised reward, or they feel as if they had failed in some way.

I am not an educator, but I am an expert in Chandler. I know that he is making progress every day - but that if I expect perfection, and try to make Chandler live up to that standard, ultimately we will be disappointed.

I also think it's important to share that while in first grade, we successfully integrated Chandler into his general education classroom for 90% of the day, but because of his IEP, he was required to start this school year in the behavioral disorder room. We were promised this transition would take only two weeks, and it's now January, and we still struggle with getting him time with his regular teacher.

As a lesson, when you have your IEP review at the end of the school year, think ahead. Think about the progress you have made with your child and how that will impact the following school year.

More importantly - celebrate the progress, each and every day. We are taking little steps, but they are steps, and I am a better Father because I live in Chandler and Spencers world.

Cory Howerton

Wednesday, February 3, 2010

Don't get pushed around

This note is for any parent of an autistic child who meets with the child's school regularly.

We meet with our sons school on a regular basis. Unfortunately most of the meetings are at our request, and they are to hold the teachers and administrators accountable for the education of my son. If you are an administrator or teacher -please just do what you say you are going to do and then parents like me won't get involved.

It started with an IEP meeting at the beginning of the school year. It was important to us that Chandler continue his integration into his general education classroom (a process that we started last year,and he did very well with).

We were told that because he had an IEP that he could not begin the year in his general education class and that we would have a plan within the first 20 days of school to begin integration.

20 days came, and went. 30 days came and went. 45 days then came and went. Time after time we were told that he had to meet specific standards to begin integration. The problem with that is, every time he hit those milestones, they put more obstacles in his way. We called another meeting where we wanted to comb through his IEP thoroughly.

When my wife brought out the document, a teacher quickly grabbed it from her (there were five members of the staff involved in this meeting), and said; "we only need to concentrate on page 35 that is the important page."

Strange, I thought the whole document was important.

At this meeting, I demanded that we have a plan and timeline in place to integrate him into his classroom. We came up with a plan, I asked for a weekly progress report to be emailed to me (this was in December, and I have yet to receive one), and that integration was to become more frequent as time goes on.

Over the next few days, Chandler came home to tell me that his teachers were telling how much more difficult it was going to be in his general education classroom, and that he would frequently become frustrated.

Of course he was already nervous. Because of the time that was wasted in not transitioning him, friendships have already been made, kids know who they play with at recess and who they eat lunch with. He knows it's going to be a challenge - and they are not helping.

Turns out, the school benefits financially if he stays in the B.D. program - and as much as I would hate to believe that their incompetence is drive by money, I can't believe that any one group of people are that careless or stupid to hold a child back when every therapist in his life (and there are many) are telling us that he needs to integrate.

Another meeting tomorrow and Friday.

Bottom line - stand up for your child, be their advocate - you are all they have. If the school doesn't listen - speak louder - get an IEP advocate, do everything in your power. We owe it to them.

Cory Howerton