Showing posts with label autistic. Show all posts
Showing posts with label autistic. Show all posts

Friday, August 23, 2013

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". 

Monday, November 26, 2012

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.







Saturday, March 10, 2012

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!!!

Thursday, March 1, 2012

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.

Monday, October 24, 2011

Awsome Autie Article

Reading this article reminded me that there are really some great things about having a child with autism.

10 Terrifice Traits of People with Autism