Part 2: Hawaii

Hawaii is all that you think it will be.  It is gorgeous.  I have never seen water that blue, mountains so interesting.  Most of the Hawaiian people were friendly.  Best of all, they have one of the leading military developmental pediatricians.  This man, a civilian named Dr. Gallagher was (and I am sure still is) fabulous.

The program was set up in such a way that my son never knew he was being tested.  For four weeks, every Thursday, he would go to a play room with other children.  Various specialists were the "caregivers" and would play with them, talk to them, and just socialize with them.  The parents would meet with a social worker at that time.  After the four weeks, we finally got the official diagnosis of autism.  We weren't shocked but it was still a blow when it was official.

At the time, schools did not do "early intervention" as we see it now.  There was no ABA (applied behavior analysis).  (ABA definition on Wikipedia)  ABA was the gold standard at the time.  There was little to no internet to look up options so we could do it ourselves. To get someone from ABA to help us in Hawaii, we would have to pay for therapists to come to Hawaii, pay their lodging and food for two to three weeks while they trained us how to do ABA.  That was totally out of our means at that time.

Jeff began  pre-school on Hickam AFB.  The problem was that the teacher had no clue how to deal with a child with autism.  I am still amazed that she was confused when my son tried to tear down the class Christmas tree.. HELLO.. you put blinking lights on it. Of course, his tantrums and his trying to tear the tree down were our fault.  If we would just discipline him, if we would just..... fill in the blanks.  One time Jeff got under a table and called his teacher a bad name.. (rhymes with witch).  During the next teacher/parent meeting I stated, "Well, at least he is using his words properly".  Needless to say, that did not go over well, though out of the corner of my eye I could see the special ed specialist for the district trying to cover up her smirk. The last straw was when the aide in the classroom followed me to our car and told me that this teacher was not nice to Jeff, put him in a corner from the moment he came in to the classroom and never let him socialize.  That day my son was out of that school and by the next week the aide was fired.  We looked for the aide for weeks but never found out what happened to her.

Jeff changed schools to Pearl Harbor Kai.  I told the teacher and aide that he talked a little at home but never in public.  When I went to pick him up the first day, the aide told me that Jeff had talked to her all day.  They had looked out of the window together and he was telling her about the trees.  I cried a little because for the first time ever, someone in the school system listened to my child.  They heard what we heard.. a little boy that wanted to communicate but just couldn't do it in the conventional way.  While there they helped him get used to go to the cafeteria (sounds can be overwhelming) and how to follow a schedule and instructions. For a child with autism, that is very important.

Our neighborhood on Hickam AFB was a cul-de-sac with sixteen town houses.  In that one cul-de-sac there were three children diagnosed with autism.  There was probably at least one more undiagnosed.  I think that is a pretty high percentage.  I wonder if a study has ever been done on children with autism whose parents were military.  I think we would find a lot of autism and other developmental disabilities.  Just from my own experience, it seems like a high percentage. 

One day, I let Jeff go out to a big field with all the other children in our neighborhood. (please note: he had done this many times without incident and after this he NEVER went out without me again)  The children would play for hours out there.. Tag, Mother May I, Red Light Green Light.. and all the children were so good with Jeff, including him as much as possible.  I was going to follow Jeff out there in a minute and I knew he would be fine.  When I did go out, Jeff was no where to be found.  All of the neighborhood children went scrambling looking for Jeff, calling out to him in our area and spreading out to other cul-de-sacs.  Being on a military base I knew that for the most part he was probably safe..but still not comforting when you are looking for your child. Finally I heard my name.  "Mrs. Reily.. we found him."  Music to my ears.

Now, imagine this scene.  Five or six young children ages 5 to 8 standing around a wading pool in their bathing suits...looking down at a fully clothed boy splashing in their pool.  He was having the time of his life getting wet and splashing.  They were stunned. The children from my area were laughing and looking back.. heck even then.. it was funny!  I tried so hard not to laugh but the scene was just too.. too.. I don't know.. autistic?  So typical of many children with autism.

Though the schools were pretty good for Jeff after we left Hickam Elementary School, my daughter was losing ground quickly.  I began homeschooling her as do many that live in Hawaii.  My husband got an assignment to Great Falls, Montana and for the first time ever.. and the last, I cried when we changed assignments.  I was not ready to go.  It was an amazing assignment and I would do it all over again.

Next: Part 3, Adventures in Montana or..how we got the military to stop sending children with special needs to Montana!

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!