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. 

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.