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.

Our Journey - Part 1, Panama, Central America

Lately I have been asked why my son is not further along.  Why didn't you get him in to all the best therapies that money could provide? Why didn't you do this or that..?  I have been asked nicely and asked with disgust.

This note is to you all:  Love one another.  Each family with a child with autism has their own path and their own story.  This is our story and it will have to be in many parts.. way to long for one blog posting.  Let's start with the military and moving to Panama.

My story starts with my husband being in the military.  We were on our way to Panama in Central America when we began seeing things were wrong with our son.  We took him to the doctor at Maxwell AFB in Montgomery, Alabama.  (my husband was going to Squadron Officer's School there on our way to Panama).  He said that the tubes my son had in his ears had come out and that is why he stopped talking and quit answering us.  We went on our merry way.. realizing that our son just needed his tubes put back in.

Go forward one year and Jeff had his tubes put back in his ears.  Jeff was looking out one of the many huge picture windows we had in our house at Howard AFB, Panama, all facing some portion of the jungle. He started laughing when the afternoon rain came.. and pounded on the window saying  "RAIN".  Hallelujah, our son was cured.  That was the last word we heard from him for at least a year.

We took Jeff to the military doctors in Panama but it did little good.  It was a day care provider that gave us the first hint of the issues Jeff had.  She wrote us a long note to us and the doctors talking about autism and Jeff's behaviors.  At the same time she told us Jeff was no longer welcome at the child care center.  He had not hurt anyone, he had not thrown toys.  No.. Jeff's offense was he would go to a corner and want to be alone.  Thank goodness for our housekeeper Stella who loved Jeff with all of her heart.  She called him El Presidente and my daughter was Princessita.When I could not be there, she would care for him like he was her grandson.  She would walk him to the park every day .. he would swing a stick and she would talk to him about all the things they saw on their walk.

Jeff was finally diagnosed with delays and was put in a special pre-school for children with delays. Unfortunately it was on the other side of the Bridge of Americas which crosses the Panama Canal.  I would have to put my 2.5 year old on a bus every morning.  It was heart wrenching but everyone kept telling me I had to let Jeff go.  LET GO?  Of a 2.5 year old? Thankfully Jeff loved riding the bus, but that did not help me much when the bridge was blocked by a demonstration of students.  I did not see Jeff until five that evening.  Thank goodness for a loving teacher that took care of him until my husband, Jim, could reach the school.

A year after this, my husband found out there was a great hospital in the military that was doing some amazing things with children with delays.  BUT, it was in Hawaii.  A very hard assignment to get.  We had to try.  To this day, I thank Colonel Carpenter, wherever he may be, for helping Jim get a new assignment.  With his recommendations, Jim got the job in Hawaii.  But not only that, Col. Carpenter had to go six months without a replacement since he was allowing Jim to move early.

By this time, Jim had also finished his master's degree in educational psychology.  With Jim's new degree and my degree in education, we started realizing there was more to Jef'f's issues.  He was spinning, flapping, lining up toys, making noise constantly..does this sound familiar?  If you know anything about autism it would be sending up thousands of red flags but the doctors in Panama all said.. and I quote, "We don't know what it is but it is definitely NOT autism".

If you are military you will know that to move your records must be reviewed by a psychologist. (or at least they used to).  For some reason, the pediatrician at Gorgis Army Hospital would not release Jeff's records.  If Jeff's records were not reviewed, then he could not move.  That meant my husband would have to go on to Hawaii and the rest of us would stay in Panama until the records were reviewed.  We tried to be a good military family and wait, but you know what.. there comes a time you just have to take action.  My husband went to the pediatrician's office and requested my son's records.  The doctor and the nurse both said NO.. not until they had time to look at them.  (Just so you know.. they had been hanging on to the records for about three weeks at this time, three weeks past the official request from the psychologist's office).  They knew we had a deadline and they were stalling.  We still have no idea why.

My amazing, rule following husband went in to the doctor's office when the doctor was busy.  Jim looked all over the doctor's desk. There at the top of the pile was Jeff's records.  Jim picked them up and walked out.  He could have gotten in to a lot of trouble but for some reason, nothing was ever said.  My hero!  We could now officially leave  Panama and go to Hawaii where we could get some real answers!

Next: Life in Paradise, Hawaii!

What To Do? Moving on Past Graduation

My son, Jeff has been saying he wants to be a science teacher and when you ask him more about it he will say quite clearly, "I want to be a substitute".  I tell people all the time, he is autistic, not stupid!  Problem is that unless there is a huge miracle somewhere, this cannot happen.  His behaviors are such that he can't even sit in class long enough for himself much less to teach others.  And what if he blows up at someone, I am sure the school district would not keep him around long as a teacher if he bit one of his students! 

Yesterday, he broke my heart.  We were talking about how this was his last year in school and going to the Arc of San Antonio next year.  He got a look of horror on his face and said, "NO.. I want to go to a science school".  How do you explain to a young person that he can't have his dream?  How can I make his dream come true?  I tried to explain that I could not find a science school and he was having no part of that... he just looked at me and begged me, "Please Mom, I want to go to a science school".

For the first time in a very very long time I cried about my son having autism.  I accepted his diagnosis years ago and rarely even have a tear, even when his sister graduated from high school and he did not nor while his sister plans her wedding, and he will probably never get married.  You come to those times that other children and young adults his age are moving on with their lives, making careers and relationships and I just have to say that Jeff's path is different, unique.

But this time I cried because he WANTS to be like his peers, he wants to do something after school besides going to a glorified babysitter all day, every day.  He wants a useful job and more education but I can't give it to him.  You want to give your children the world, but I can't give Jeff this one small thing, a life that he desires. 

I am sad and frustrated, but I am not giving up.  I think I will go to the junior college nearby and see if he can audit a science lab if I am right there with him. My husband is a science teacher and he is going to ask if Jeff can come to school with him from time to time.  Those are some options, but there has to be more.. if someone wants to learn and wants to be active in our world.. shouldn't we find a place for him?  Just wondering...