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". 

Six Thinks You Don't Know...

I want to thank the author of this article.   She said things that I knew..but could not express. 
Six Things You Don't Know About Special Needs Parents

Don't know what to say to your friend or family member that has a child/adult with special needs.  How about at least acknowledging their frustration and listen when they need to talk.  Sometimes that is all they need... or maybe stick around so they can take a nap!!!

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.