February 26, 1966 - November 27, 2005

About My Brother

My brother was 39 years old, non verbal autistic. He lived in a group home with six other autistic boys. My parents had brought John home for the Thanksgiving weekend. Wednesday night is when they noticed he was running a fever. Nothing to be concerned about. They gave him Tylenol and got him comfortable. Thursday, Thanksgiving, John’s brother-in-law, my husband, Brian and John’s two nieces and myself went over to eat all day. When we arrived John, as usual, came out from his room let it be known he knew we were there, gave us a smile and a whistle and went back to what he was doing. After dinner was ready my mom went back to check on him and noticed he was asleep. We decided that since he was running a fever to let him sleep. After dinner was done my mom and youngest daughter went back to check on him again. He was still sleeping. I told my mom that he obviously needed the rest. Friday morning he got up out of bed, walked down the hall to the kitchen, got a drink and a bit to eat then collapsed. Hearing this my parents went in to find out what happened and they saw him crawling down the hall back to his bed. It was at that time that they decided he needed to go to the hospital. Upon arrival at the hospital, mom went in and told them what had happened. A wheel chair was brought out and they took John in. Tests were done and they found that he was dehydrated and that he was on the verge of pneumonia. IV fluids and antibiotic was given to him. It was decided that they would take John back to the group home where the staff could keep an eye on him and help him if he should fall down again.

When they arrived at the group home my parents and the staff got him to his bedroom, got him ready to get in bed. At that time no one saw any marks on him what so ever. About 8 pm that night one of the care givers went to check on him and noticed he had gotten sick in his bed. When he pulled the covers back further he noticed a rash on John’s right leg. When the care giver touched the rash he felt snapping and popping. My parents were then called and it was decided to call an ambulance and get John back to the hospital. By the time they got to the hospital my brother had no blood pressure. The wonderful people in the ER were able to get his blood pressure back. At that time the doctors knew what they were dealing with. The rash on his leg had turned into a monster and was spreading like wild fire. I have seen lots of things in my life that took my breath away, but this by far was the worst. The only problem now was trying to get a surgeon to come in on a holiday weekend to do the surgery. The ones that were working were busy with other surgeries that had come in before John. Calls were put out all over the city looking for a surgeon somewhere. The hospital was even considering using Life Flight to take John to a hospital where this surgery could be done. The surgery was done about 4 am and it took about 4 hours. A lot of his leg and buttocks was removed. He was then sent to ICU and was made comfortable. The ICU nurse told us that she could put her fist in the area that had to be removed from his buttocks. She then showed us the chart where the doctor had made a drawing of all that had to be removed.

Saturday evening is when they wanted to try the hyperbaric chamber. The doctor that was in there with him came out and talked to my parents and told them the only thing they could try next was to remove his right leg and hip, part of his pelvis and some of his left leg. Leaving him to be on a bag and bed ridden for the rest of his life. You and I would have a difficult time adjusting to something like this. It would have been very cruel to do this to someone like my brother who did not understand why he could not get up and walk across the room. His kidneys had started to fail. The decision was made to make him comfortable and let nature take its course. The doctor also said that he could NOT even be 95% sure that this all would work and make the infection go away.

Sunday 11-27-05 at about 9:50 pm my brother went to be with the Lord and his angels. The hospital Chaplin, 2 ICU nurses, the nurse that stayed with him in the ER, my parents, myself and my husband were there when he passed. Who knows how many others this has happened to and they really do not know why their loved one died for the simple fact they were not informed. Maybe the doctors themselves need more information. All I know is that I want to get the word out somehow and make a difference for our loved ones that have lost their lives to this horrendous infection.

The following is what I wrote and read at his service:

What I did not have as a sister was

A brother to fight with
A brother to take places after I got my drivers license
A brother to tell my troubles to
A brother to tell me his.

What I did have as a sister was
A brother that taught me it’s the simple things in life that make you happy. Such as a nice shiny new pencil or pen or comb. (we think that he liked the texture and different shapes. He would play with these for hours)
A brother that taught me that just because you have a handicap, does not mean you are any less a person and should be treated as such.
A brother that taught me there is always time for a smile and you can never have too much Worcestershire sauce, coke or McDonalds hamburgers.

When John first started going to school they had to come up with a time out. Anytime he would do something he was not supposed to do he was to stand on a square in the middle of the room. One day he decided he did not want to take off his coat after arriving at school, so they put him in time out. He knew that if he took off his coat he would have to do something else. John stood in time out all day refusing to take that coat off.

John had a game he liked to play called steal the pencil. He would go into stealth mode. As soon as your back was turned he would strike. I don’t know how many times I had to chase him down the hall into his room looking for my pencil so I could finish my homework. You know, the pencil he took would never be found. Also if John wanted to be left alone and you tried to walk into his room you would have a comb come flying at your head. Message received. We left him alone.

We had a cat growing up. His name was Walter. Walter was a beautiful seal point Siamese. His litter box was out in the garage. Whenever the cat needed to go we would ask John to let the cat out. John had his games well so did Walter. Walter would stand at the door until someone opened it then Walter would change his mind. One day John was asked to let the cat out and Walter changed his mind and started off down the hall. Next thing you saw was John carrying this cat by his fur on his back opening the door and out went the cat. Guess who won that game.

There was also the time we took a family trip to Worlds of Fun. (an amusement park) We tried going on a roller coaster. John did not like it at first but by the end of the ride we could not get him off of it. My parents had to explain to the operator what was going on. They let him go a second time.

In 1974, three people got together and started Sherwood Center (where he went to school) I have seen this school go from a basement in a church to an actual school building. They have come a long way and have made a huge difference.

My parents and I want to thank everyone that taught, cared for and loved John. Everyone that took the time to get to know him. Every single one of you do an impossible job. It takes a very special person to do this work. But you all gain so much personal satisfaction knowing that you are making a difference. We also need to thank all of the doctors and nurses that worked so hard to help him.

John touched a lot of people in different ways. We all have our memories of him. Do not forget them. These very special autistic people are put on this earth for a reason. To make is strong, to help us realize what is really important in life and to make us laugh at their funny unique ways helping us to be able to laugh at our own.

John was welcomed at the Pearly Gates by our loving Aunt Mary whose mission in her life was to take care of everyone and make them smile. Our Grandma Sadie who also was a loving and caring person. My sweet dog Niki who had nothing but kisses for John and of course our loving cat Walter.

John can now talk a mile a minute. He has 39 years to catch up on. I am sure he is telling a lot of stories about us at this very moment.

It was a great honor to know someone like John.

The next day we had a graveside service. There were lots of flowers and another favorite of his, balloons. After the Preacher finished his words of comfort and faith I made sure all of the kids from John’s school received a balloon. Each group of family received a balloon also. All the balloons were let go at the same time and everyone just stood there and watched them float up to him.

I miss my brother and always will.

I love you John.