Friday, February 17, 2012

Respite Weekend at CAMP

Jeff as a Ninja Turtle during Summer Camp CAMP
This last weekend Jeff went to Respite Weekend at Camp CAMP.  He has been going to Camp CAMP in the summer since he was nine years old but in the last few years he has also been going to Respite Weekends.  It is one weekend a month, September through May at Camp CAMP in Center Point, Texas. (CAMP Website)

I needed this weekend.  Not that I don't love having my son around, but I have learned something through the years;  I need to miss him from time to time.  A weekend here and there, summer CAMP once a year for a week, and TADA also known as Teen and Adult Day Adventure. Usually one Saturday or Sunday a month during the Respite Season,TADA is a program through CAMP (Children's Association for Maximum Potential) that pairs up typical teens and adults with teens and young adults with developmental delays.  They gather together and go to a Spurs game (basketball for you non-sports types), Sea World or the annual trip to the Rivercenter Mall in downtown San Antonio in December. Jeff seems to love the socialization and I get a small break, knowing Jeff is having a great time.

My father, Bill Spearman with Ben Elble
This last weekend I was a little concerned.  Jeff has been having some medication issues and I was worried he might have a melt down at Respite Weekend.  I called all my CAMP friends that were going to be there, warned them about behavior issues and made sure they knew they could call me if they needed me to pick him up early.  To my amazement, Jeff did great!  He was given an experienced counselor,  (thank you Oscar) and all of his usual friends were around.  Alex, Drew and Ben Elble.  Ben is the Associate Camp Director at Camp CAMP and I call him the "Jeff Whisperer".  I don't know how, but Ben seems to be able to calm Jeff down when no one else can.  He sees Jeff as Jeff and not a challenge.. just his buddy.  Scary thing is Jeff is twice Ben's size, but "Mr. Ben" as Jeff calls him, is not daunted in the least.  He is calm and just expects good behavior.  Most of the time, Jeff complies and when he doesn't all "Mr. Ben" has to do is say "JEFF" and my son will say, "Sorry Mr. Ben" and that is the end of it. 
Danielle with her fiance' Phillip
Thanks to CAMP and "Mr. Ben" I got a great weekend with my husband and daughter and a surprise guest, my daughter's fiance, Phillip.  He lives quite a ways away and he surprised her for Valentine's Day.  It was truly a great weekend.  Not only did we have a great weekend but so did Jeff.  It was truly a guilt-free respite. 






Wednesday, February 15, 2012

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!