Part 3: Great Falls, Montana or.. Hell for Jeff

After leaving Hawaii, we ended up in Great Falls Montana.  What a beautiful spot.  Exact opposite of Hawaii but full of crisp cool mornings and scenery that would take your breath away.  Unfortunately, we moved in October.  We bought clothes in Hawaii that we were sure would be warm enough, but they were not.  Each month we had to buy another layer of clothing.  We arrived just before Halloween and my children loved to dress up (they still do).  I tried to put coats on them but they would have nothing of it, it would cover their costumes.  After getting treats from two houses, they decided they had enough and they came home. 

Jeff seemed to thrive in Montana at first.  Some things he had to get used to.  Jeff loved to go barefoot in Hawaii and Panama.  Not a great thing in Montana.  One morning I found Jeff in the front yard, barefoot.  Jeff just stood there, in the snow and looked up at me, "OUCH".  "Well Jeff," I said, " it is cold and it hurts, come in.".  "OUCH". .. he would not come in.  He wanted to play in the snow but he could not connect that the cold snow was causing him pain.  Thank goodness he was still small enough to pick him up and carry him in to the house.  It took at least one winter season for him to understand the connection. On that same note, he hated to wear socks.  He never had to wear socks for the last five years.  I would put on his socks then his snow boots to go out to the bus.  He would scream and holler until finally I would let him wear his boots without socks, but needless to say they became quite 'stinky' after just a few days.  I realized he hated the seam in the socks, they bothered him.  I thought and thought, "What can I do to get that boy to wear his socks", and honestly to keep from having to smell those boots?  I finally said to him, "Jeff, you have to wear socks, YOU put them on".  I never had another issue.  He could position them so that he did not feel the seam.  Simple solution.. wish I had figured it out sooner.

Jeff loved sledding as did the rest of the family and when he was dressed in layers, he really enjoyed walking and hearing the crunching snow. We walk to a small hill near our house, pulling the old sled I used to use when I lived in Germany as a child.  He would eagerly get in front of his father and they would swoosh together down the hill.  It did not take long before Jeff wanted to do it by himself. 

After a lot of issues with the school district, them trying to figure out where to put him, Jeff was sent to Chief Joseph Elementary School.  There we met a teacher that seemed to understand autism and how to teach children that learned differently. She was very knowledgeable and could quote all the right buzz words.  Daily, he would be picked up by the bus and then dropped off in the afternoon.  He seemed fairly happy.  One thing I do know, he LOVED his bus driver and the aide on the bus.  They loved him too.  The bus driver was a retired gentleman who was very grandfatherly towards Jeff.  No matter what, Jeff could do no wrong.  The aide was a young man that looked no more that 20 years old.  He would tease Jeff and play with him, much like an older brother.  Bus time was Jeff's favorite time.

During a meeting when school had already begun, I was given his IEP (Individualized Education Plan) that outlined a behavior portion.  One thing it did have, it had the use of  negative reinforcers.  I was totally against what they had in mind. (I was against any punishment like that) If Jeff kept yelling, as he was known to do from time to time, they would put hot sauce in his mouth.  As I read that I could not believe my eyes and I said "NO.. you will not put hot sauce in my son's mouth". I crossed it out and I initialed it to show the change.  The teachers looked at one another and rolled their eyes.  I should have figured it out right then and there.  (They were stating the Lovass method for children with autism but they were using a very very old play book.  The Lovass method had evolved from using such negative reinforcers to get a child to comply)

As the school year progressed Jeff began begging us not to go to school.  He wasn't extremely verbal, but he got his point across almost daily. One afternoon I went out to greet the bus and the bus drive and the aide jumped off the bus.  They were both shaking they were so angry.  They stumbled over the words but from what I could surmise, Jeff came out to the bus after school and was crying.  The bus driver asked why Jeff was crying and the aide said, "He wouldn't shut up so we put hot sauce in his mouth."  Jeff had on a yellow sweat shirt and there was a red streak down the front.  I immediately called the school district and the secretary was horrified. She said she would get a message to the superintendent immediately. 

I called our military pediatrician and took him directly to the clinic.  She looked in his mouth and saw his shirt, (I did not take it off for that very reason) and she said it was red and one blister but other than that he was physically fine. I told her that I wanted to make sure it was in his records.

They next day I heard from the superintendent and he was very condescending. When I told him I had said under no circumstances was the teacher supposed to do that, he said he had Jeff's IEP right in front of him and it was initialed that I approved this technique.  I had a copy too.. could I bring it down to show him MY copy. (I wanted to do something other than show it to him)  He said I was over reacting and I pulled Jeff out of school that day.

We called lawyers all over town but we were stalled at every point, "Mom works there, wife works there, friends work there.. etc etc"  No one would even look at the case because honestly the school was the biggest source of employment.  Finally one lawyer said that it has already been passed around town to not even talk to us.  Gotta love small towns.

At this point we went to the military to see what they could do.  They did not believe us, at first.  There was research done, they talked to the schools, the counselors then they talked to the bus driver and the aide.  They went and looked at Jeff's medical records (thank goodness I took him in) They got my copy of the IEP (I made a copy to give them.. my Mamma didn't raise a fool) and then they gave us a humanitarian move stating that the Great Falls School District was not only negligent but unable to handle children with special needs. 

If you don't know how this works, the school districts get money per child in the classroom, they get more if they are a military child and much more if they are a military child with special needs.  We were told that very few families with children with special needs were allowed to go to Malmstrom AFB in Montana for a couple of years, until the military was satisfied that they had changed their policies.  We got them the only way we could.. through their pocket books. 

Autism Blogs Directory: Guest post-"Everything starts with an A"

I rarely think about it any more.. but so true.  We have had Jeff and "the A word" in our lives so long I am not sure I would know what to do if we did not...Good Read


Autism Blogs Directory: Guest post-"Everything starts with an A":   "How do you make it work with children with autism in the family? I am often surprised by how differently other people live t...

It Has Been a Long Time

For those of you that have stuck around, thank you. 

Jeff on graduation day

Life has been more than crazy lately, it has been insane.  My son Jeffrey graduated from the Reddix Center in May.  He was excited for all of the attention but he is very sad about not being with his friends at the Reddix.  He has cried and begged me to let him go back to the Reddix.  (The Nellie Reddix Center in San Antonio, Texas. It is a public school for transition that students who have special needs can go until they are 22 years of age) How do you explain that he has to move on?  He doesn't understand that he is an adult.  When you ask him how old he is, he will always say he is 13. When we tell him he is 23 he keeps saying over and over that he is "just a kid". 



Jeff with his sister, Danielle, on the right
and good friend Alex on the left

He has started to settle in at the Arc of San Antonio.  Though it is not ideal, there is a great effort to make it sensory friendly and age appropriate.  This summer he started in a room that has no more than 10 adults with sensory issues.  They have computers, head phones, mats and other activities.  His teacher, Mike, is an amazing young man.  He has the patience of a saint.  The aide in his room is Rose.  Between these two people, Jeff is doing well.  But.. he still begs to go to the Reddix.  At the Reddix they had out of class activities daily.  At the Arc it is only once a month due to lack of transportation and staffing.  This has made Jeff very sad.  He loves to go on adventures. 

Jeff with his CAMP Buddy from
Summer 2012, June, who is a
pre-med student at Vanderbilt University

What we have been trying to do is to have Jeff involved in every CAMP activity possible.  CAMP (Children's Association for Maximum Potential) is a place we found when Jeff was nine years old. At first he just went one week each summer.   Now he goes each summer and each weekend that we can get him there.  He also goes to a program called TADA (Teen and Adult Day Adventure) Once a month he goes out with his CAMP buddies to a different social event (December is a dance at a local college) with CAMP teens and typical teens. 

Before I go further I want to let you know I work for CAMP.  I started in 2005, several years after my children started attending.  There are times I tell people I wish I did not work at there so I could tell them all about CAMP without sounding like a commercial.  Jeff has been going since he was nine, my daughter Danielle started at Sibling CAMP when she was eleven.  Danielle became a volunteer at fourteen and for the last three summers she has been the Camp CAMP Office Administrator.  My husband has even jumped in from time to time to help at check-in or wherever he can.

This has been a tough transition.  I am not sure we are through with it yet.  He begs me to go to the Reddix almost daily.  He also wants to go to "science school".  He loves science.. he gets that from his father.  Jim is a science teacher at an intermediate school.  Once I asked him he wanted to be a science teacher like his dad.  He thought about it for a minute and said, "No.. I want to be a substitute".  Smart Man! 

Not sure there will ever be an "end" to the transition. We have so many changes coming up in our lives, some we know about and many we do not.  What do we do about his future?  Where will we end up living?  Where will Jeff end up living?  So many changes coming that it is a little scary.  So I just hang on for the ride... not sure of the destination.

Mama Be Good: Perpetuating the Stereotype: Autism, Parenting, & Murder

Mama Be Good: Perpetuating the Stereotype: Autism, Parenting, & Murder

This brought on a great discussion on another blog.  Comments? 

Mama Be Good: Don't Do This Alone

Great article no matter if you have a child with special needs or not.

Mama Be Good: Don't Do This Alone

Six Thinks You Don't Know...

I want to thank the author of this article.   She said things that I knew..but could not express. 
Six Things You Don't Know About Special Needs Parents

Don't know what to say to your friend or family member that has a child/adult with special needs.  How about at least acknowledging their frustration and listen when they need to talk.  Sometimes that is all they need... or maybe stick around so they can take a nap!!!

Great Article About First Responders and Autism

I just saw this report through Autism Speaks.  Good information for everyone. 


Fire Rescue on the Today Show