Jeff Faces a Death

 I have not written in many months because I would cry each and every time I tried to tell this story.  But life goes on.. so here it is.

My father passed away January 31, 2013.  Though I am more sad than I could have imagined, I was even sadder thinking of how my son, Jeff would react to his "buddy" passing away.  From the time he was born he had a bond with my father. When visiting my parents he would give my mother a little side hug if she was lucky but he would practically jump in my dad's arms.  They could talk for hours about nothing and everything.  He would actually let my father share TV time which is a privilege saved for only a few.

Even after my father had hip surgery, he would take Jeff to their favorite 'chicken' place in Lufkin, Texas, just the two of them and have guy time.  Dad always insisted that he take Jeff by himself even after Jeff started showing some tendency for violent outbursts.  Dad would just say that "He won't do that with me" and he never did.

After my father had a heart attack three years ago, I was concerned about him taking Jeff out by himself but Dad wanted his guy time with Jeff.  He would do things for Dad he wouldn't do for anyone else to include my husband.  I have pictures of Jeff and Dad cooking out in the backyard. I even have one of Dad holding Jeff for the first time.  For the last three years when I asked Jeff what he wanted for his birthday he would say, "I want to go see Grampa" and we did. 

Gramma and Grampa Spearman
at Danielle's wedding 10/28/12

This last October, my daughter got married and Jeff escorted his two grandmothers and me down the aisle, one at a time.  He enjoyed hamming it up with Grampa and my dad seemed to enjoy just watching Jeff spin and flap.  This December, I just wanted to spend it with my parents.  I don't know why I felt such a huge pull to spend it with them, but I couldn't let it go.  So we spent a beautifully quiet Christmas with my parents.  Jeff seemed a little confused because the last time we had Christmas there, it was quite a crowd!  I think we counted eighteen of us in their house having fun and singing together.. and my son led "Rudolph the Red Nosed Reindeer".

As a Christmas present, my mother got Jeff a gift certificate to take his dad and grandfather to the Naranjo Museum of Natural History. ( http://naranjomuseum.org/ )  This museum is just outside of my parent's subdivision and Jeff had a great time treating his favorite guys to an afternoon of dinosaurs. When we left Lufkin we headed to the Fort Worth area to see my daughter and her husband.  Then, as we were getting on the road to go to my husband's parents in the Marble Falls area, we got a phone call, my father was taken to the hospital for a bowel obstruction and was having emergency surgery.  I was told they were not sure he would make it through surgery.  I quickly got home and dropped of the "boys" and headed to Lufkin. I arrived just as the surgery was over and Dad had made it through. 

Dad got pneumonia and another infection that the doctors could not find.  The surgeon went back in, saying that Dad very well might not make it through surgery.  But he did, but as the surgeon said, "I found the one thing that no surgeon wants to find... nothing".  Surgeons can't fix "nothing".  I went to visit my father a few days later and he seemed a bit improved and they were sending him to another hospital to start rehab.  A couple of days later I was called and told I needed to get to Lufkin immediately.  Taking Jeff to the Arc of San Antonio that day (his day-hab) he asked me when Grampa was going to get better.  I had to tell him that he was very sick and may not be able to leave the hospital.  Jeff got angry and yelled at me, "GRAMPA IS NOT GOING TO DIE" That was a long drive.  When I got to the Arc, I told his teacher what was going on. I could barely hold back my tears as I thought of that long drive to Lufkin and what would Jeff do when Grampa was gone. I got a call from the Arc later that day, Jeff was really focused on my father.  His teacher said he did not know what to do.. neither did I but I did say it was fine to say we would pray for him and that if something happened Grampa would be in Heaven.

As I drove to my father's bedside all I could do was think of Jeff losing his buddy and my daughter who just found out she was pregnant, how she would deal with the loss of her grandfather.  I got there and ran up the stairs. My father was still with us but he was not communicating in any way.

My husband, Jim picked Jeff up at the Arc and Jeff was very quiet.  He turned to his father and said, "Grampa is going to die isn't he?" He then said, "Grampa will be in Heaven".  I am not sure what all the folks at the Arc did, but Jeff was beginning to understand what was going on.  The next day, I was at my father's bedside almost all day.  He was communicating a little by nodding or shaking his head.  Knowing he was hearing us in some way.. I told him it was OK.  That Jeff was going to be alright and missed him already but would see him again someday.  After we left for dinner, my father waited a few more minutes and then quietly fell asleep and passed away.

A couple of days later, when my husband was driving to pick up my daughter in Fort Worth then to Lufkin for the funeral, he constantly talked about Grampa to Jeff and what was going to happen, about the funeral and what that would be like.  He answered questions, probably the same ones a hundred times but my husband is patient, thank goodness.  When Jeff got to my parent's house, he wandered around quietly, just looking in all the rooms for hours.  I wondered if he was looking for Grampa, just in case it was a joke of some kind.  The night before the funeral, we decided to have a family visitation.  Everyone agreed that it would be best for Jeff to see Grampa before the funeral but not in a large crowd.  We all knew that he needed to see my father, to get closure and to know he was really gone. 

Jeff went to Grampa and looked at him. We stood ready for a tantrum or yelling but he did not touch him or sniff him (which is what we all thought he would do.. he smells everything) He just said, "Good-bye Grampa" and that was it.  You could have blown us over with a feather. But then, he always behaved for his Grampa.  That night, once again he roamed the house very quietly, peering in to various rooms.

At the funeral the next day, my husband decided to take Jeff, to give him a final good-bye.  At the end, Jeff went to the casket, put his hand on it and said in a loud, clear voice,"I'm gonna miss you, Grampa."  Everyone heard it.. and everyone was in tears. But for Jeff, he had his good-bye.  We went to the cemetery and Jeff was spinning and flapping, like the usual Jeff.  When we got to my parent's house, Jeff was back to his old self, laughing and spinning.  Some of my relatives who did not know Jeff, were amazed.  As my mom told my aunt.."Now THAT is Jeff". 

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. 

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.

What About Siblings

Great article at the bottom of the page

My daughter, Danielle (24) and I have had the discussion about being a sibling of a child with special needs many times.  Having been a sibling CAMPer and then a volunteer at Camp CAMP, (camp for children and adults with special needs in Center Point, Texas) she has seen so many siblings get passed over, ignored, asked to do most of the day to day tasks, and treated unfairly due to having a brother or sister with special needs. 

My husband and I made a conscious effort to work hard at not making Danielle feel like she was not as important as her brother, Jeff who is 22 and has autism.  We wanted her to feel special because she is.  We never wanted her to feel left out.  Unfortunately, it is the nature of the situation that there are times the sibling is left out and feels unappreciated. 

When we lived in Panama Jeff started showing signs of autism. Danielle was five years old and taking ballet.  During her recital Jeffrey sat on my lap and when she had danced I would put his hands together to clap and then he got the hang of it and clapped on his own.  When she was done she ran to us, in her little pink tutu and tights, "Jeffrey clapped for me, he liked my dancing." She gave him a huge hug and he smiled from ear to ear.  We realized she needed to feel connected to him and at that moment she was.

We were definately not perfect.  There were times that I was just too tired to do her "Scout" thing just after an emotional therapy session with Jeff. But usually I would get up, brush off the exhaustion and go to an event, knowing that she needed me, maybe even more that Jeff at times. There were times when my husband, at that time an Air Force Officer, would be TDY (military term, Temporary Duty or business trip to the non-military)  and I would ask too much of  her.  Ask her to buckle his seatbelt in the van or unload the dishwasher just one more time. 

I will say I have one smart daughter because often times, she adapted to this extra load.  When she was tired of doing some of the extras, she took the time to teach her brother how to do it.  Thanks to Danielle he now does his own seatbelt and yells at anyone that doesn't put one on, unloads the dishwasher and he carries the clean folded laundry to each person's bedroom.  He feeds the dogs without being asked and he cooks his own lunch for school each day.  We are still working on not over microwaving the popcorn.



The Engagement Picture
Phillip and Danielle

Danielle is getting married.  We are so excited and we love her fiance', Phillip very much.  In planning the nuptuals, Danielle and Phillip went to various venues to pick the perfect one for them.  They found their dream location and brought my husband and I to see it.  As we arrived I saw this huge porch with rocking chairs.  Then, I made a huge mistake.  "That is beautiful Danielle, and if Jeff starts getting fussy we can bring him out to rock in the rocking chairs."  I saw it in her eyes and drooping shoulders, "Mom, this is about us, not Jeff."  She was right.  At the moment of her excitement of finding the perfect place for their wedding, I was thinking of Jeff.  Then she said, "That's OK, I am used to it".  She shouldn't have to be 'used to it' but it is the nature of the situation.



We tried to do it right and here are some of the conscious efforts we made:

• We tried to involve Jeff in our daughter's activities so we could attend like any other family.
• We gave the kids things to do together that would be fun like filling up a baby pool and splashing.
• We involved Danielle in what was going on with her brother.  As she got older she was even more involved, by her own choice.  She is now his guardian if anything should happen to us.  We do not expect her to have him live in her home, but she will be the one to pick someone or the place for him to stay when the time comes that it is necessary.
• We tried with all our might to not make everything about Jeff.  We were not always successful but we tried.
• Date night!  We would take Danielle out, just her and one parent while the other parent stayed with Jeff.  Jim took her to see Phantom of the Opera and I took her to see Cats.  (I should have held out for Phantom) 

Looking back, I know we could have done better but when you are living in the moment, sometimes you are just barely making it.  I say, do the best you can, be strategic about including the entire family and make time for the siblings because they need it just as much as your child with special needs, sometimes more.

Article: Don't Forget About Me; Being a Special Needs Sibling

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. 

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!

Holiday Survival

Jim, Carla Suzanne, Danielle and Jeff

This was not my son's best holiday season.  Far from it.  Since October he has been increasingly violent and frustrated.  If you have an individual on the spectrum in your life, you know what the holidays might bring. 

This year brought us a future son-in-law and a visit to my in-laws.  The son-in-law is amazing with Jeff and that is no problem but it was still different.  The SIL lives quite a bit away and we don't get to see him as much as we would like.  The in-laws was pretty sedate compared to other visits, definitely less stressful without the grimacing mouths and rolling eyes of one of the relatives that shall remain nameless. 

With all of that you would think our holidays would be pretty easy, but they were not.  Jeff got angry, tried to hit, he actually bit someone not once but TWICE in one day during the last day of school.  (he has not bitten anyone in recent memory).  All and all, not his best month.

Why such a drastic change in behavior?  I am not sure.  I wish I had a magic pill that I could take so I could all of a sudden understand everything my son says or does.  I can only be the best detective I can be.  One time he was saying "I am not a bird" for years.  When he was mad, happy or tired.. didn't matter.  I would hear that phrase at least fifty times a day.. until I broke the code.  He was sick and I bought him a toy dinosaur.  When I gave it to him he was watching Jurassic Park.  Jeff looked me straight in the eye and said, "See mom, I am not a bird".  The light bulb went off..  In the beginning of Jurassic Park, the main character is telling a child that he believed dinosaurs evolved in to birds.  Jeff disagreed.  I said, "JEFF.. I get it, you are telling me you don't agree with him".  He looked at me like, "well DUH".. and we never heard the phrase again.  Detective work!

So what is setting Jeff off so much this year? Is it me?  Is it environment? Is he in pain but can't tell me?  I am not sure what it is, but I will keep searching.  In the mean time I found a few articles that might be helpful.


Autism and Holiday Gatherings
Child with Autism and Holidays   <---I messed with the title.  I have a hard time with "autistic child".  I am in to the people first language... maybe it is because I work for a non - profit dealing with children and special needs.
Article from the UK
From Psychology Today

Great Article for Caregivers

 Are you a mom or dad of an individual with autism?  You need to check out this link!  Nice to put a name to it but still not sure how to make it better.

Beware of MASK Syndrome

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...

Heading to CAMP

We are truly blessed that our son goes to a camp during the summer.  He goes to a place called Camp CAMP (Children's Association for Maximum Potential).  Every summer since he was nine, we put his name in all of his clothes, get out his suitcase and pack all of his favorites.  He has his favorite blanket just for CAMP and he has to find one hand toy to take, though in recent years we have been told that it stays in the suitcase. We pack up the truck and head to the Texas Hill Country to Camp CAMP. 

Jeff is very calendar oriented.  Beginning in May Camp CAMP must be on the calendar.  Starting in June, we have to count down the weeks before that first day at camp.  When July hits we are counting down the days.  I think as parents, there are days my husband and I are counting the hours and minutes. This Sunday, Jeff checks in to his cabin and we set off smiling and happy knowing he will be having a great time in a safe environment.  But it wasn't always that easy.

When Jeff started going to Camp CAMP, I did not want him to go.  No one could keep my son safe and happy like I could.  No one understood his body language or his mood swings... in other words, no one could care for Jeff like I could.  At that time, my husband was in the military and the doctors at the clinic said I really needed to give it a try.  (We found out later that CAMP was founded by Air Force docs at Lackland AFB) Everyone from my husband to my parents and friends said I needed to let Jeff go to CAMP.. to me all I heard was "You need to let him go" and I wasn't ready to do that.  But my husband disagreed, strongly and I finally let him go to CAMP on the condition that his sister, Danielle went to the sibling camp that was held at the same time.

As we drove on to the Camp CAMP property we were met by a volunteer who told us where to park and where to go first.  That is when I started tearing up.  We went to the infirmary area where there was a circle of chairs under some trees with about twenty families with twenty children with autism all in one place.  If you have ever been around children with autism, you will understand how 'interesting' that can be.  We got our number and sat down.  I looked around and realized that I was not alone, not the only first time CAMP parent with reservations.  Some of the 'old timers' gave their advice and comfort freely.  It helped to hear that they were where we were at one time. 

When our turn came, Jeff cried, screamed and threw an unholy tantrum.  We got him inside where we answered all of the doctors and nurses questions over a screaming Jeffrey. I was sure they were about to tell us to take him home, but they all just smiled like it was normal.  Looking around I realized it was a normal thing at Camp CAMP.  We checked in  our daughter but of course that went much better.  We took Jeff's luggage to his cabin and met his counselor.  HIS counselor... not one for five kids but his very own buddy for the week.  I don't remember her name, but I do remember that she made me feel more at ease.  She showed me where he would sleep and where she was sleeping so that she could hear if he needed anything.

I left there in tears but I still had to get my daughter to her camp site.  We met Danielle's counselors and immediately she started meeting other children who had brothers and sisters with autism.  She did not feel alone or scared, she had people who understood better than anyone else how it felt to be a sibling of a child with autism.  She had found her own community of friends at Camp CAMP.

As we drove away, I began to cry and I cried the whole 45 miles back to San Antonio.  That night I called the Camp CAMP office to ask how he was doing, and though I called two more times that week to check on my son, I also realized something.  I got to sleep!  Not just sleep but sleep as long as I wanted.  No one to wake me up three times during the night.  I got to eat without shoving food in my mouth as fast as I can so I could take care of Jeff.  I got to go to a couple of restaurants that I could never go to with Jeff and we went to a movie. No..not just one movie but three.  I couldn't remember the last time we had gone to a movie that was not a cartoon or had to leave because of Jeff's behaviors.

By Friday, I was ready to see my children.  We drove up to Center Point, Texas and went straight to Camp CAMP.  There they were, both of my children.  Jeff yelling his head off  "Where's My MOM.. Where's My DAD" and Danielle smiling from ear to ear, excited to tell us about all of the other kids that were like her, sibling of someone with special needs.  With Jeff yelling so much I was worried that something had gone wrong, but Danielle was quick to point out that she saw him many times during the week and he was fine.  "Mom, he is only doing that to make you feel guilty."  She was right, Jeff was 'playing' me.

Year two was easier but I still cried and I called the CAMP office two times.  By the third year I waved and said goodbye with  no tears from Mom.

Danielle was asked to be a counselor the summer she was 14 (the youngest age you can be a counselor) and she was very excited, but one incident almost ruined a great week.  She was down at canoeing wither her CAMPer when there was a call from a walkie-talkie, "Can Danielle come to the infirmary?  Her brother is having a bad tantrum and we could use her help".  Danielle ran up the hill and all the way to the infirmary.  She burst in the room and in her loudest voice, "Jeffrey Thomas.. what do you think you are doing young man?  You better cut it out NOW".  At that moment, Jeff realized that he was not going to get away with anything with sister around.  On Friday, at the awards assembly, Jeff was awarded the 'CAMPer of the Week' award. 

There have still been incidents from time to time that have caused a problem but over all he is always behaves at Camp CAMP.  He also sleeps through the night for them.. they keep him very busy.  He attends weekend CAMP during the school year and goes to another program called Teen and Adult Day Adventure (TADA) once a month.  We have become a CAMP Family.

Some things have changed as he got older.  His sister Danielle was a counselor for seven years and for the last two years she has been what is affectionately known as the "office wench".  She is the one that gets the frantic calls from the parents of first time CAMPers, calms their fears and helps them find out how their child is doing at Camp CAMP.  Having heard the stories she has to tell about the parents, I wish I could find the poor girl who answered the phone when I called to thank her.  I now work for CAMP and every check-in and check-out day I am at Camp CAMP. Jeff is now 21 and this summer is his last summer as a regular CAMPer.  Starting next summer he will be attending a session for adults with special needs.  Things are definitely different from that first summer.

It is bitter sweet, his last week as a regular CAMPer because I found out that at least two of the CAMPers that were with him during his first week at CAMP will be there his last week at regular CAMP.  Justin and Nate will be there and I am sure their sisters, who were both at sibling CAMP when Danielle started will be there to help them settle in.  Great way to end this chapter at Camp CAMP and a great way to start a new one.

Last summer, Jeff made me cry again.  I was working at Camp CAMP when he came by with his buddy (counselor) Mason and said, "Mom, hurry and go away so I can have fun".  Though I am so happy he is more independent, I have to admit that a part of me wants him to miss me just a little bit.