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!
