The Autistic Brother

“I want the coke! I don’t want the Pepsi!” Avery yelled with hand motions from the back seat. He had a thing for coke. It wasn’t the way it tasted. He liked the symbol of the coke bottle and he loved the color red.

Avery was born Autistic. He was obsessed with not changing anything in  his life.

https://www.autismspeaks.org/what-autism

 

He loved red. He had his bedroom decorated in red. He wore red Keds. He had red pajamas. He loved red Kool-aid. He was now nine years old and as long as those around him kept his routine the same; he was fine.

Teaching him new things was a challenge; but could be accomplished with much patience and professional training. He didn’t like school very well. He didn’t have very good social skills.

What he did like was spending time with his older sister; but that was a difficult task to achieve. The parents liked Avery being quiet. If others became involved in his life, wouldn’t that cause an eruption in their day?

There was a strong bond between the sister and brother. Some may even say they could somehow read each others minds. Whatever the travel of thought was, the point is that the sister understood.

Tonya played alone or sometimes was allowed to have her friends over. When times arose where it threw the brother and sister together, the two clung together. She read to him. She sneaked him pieces of her candy. She made faces at him and he would laugh.

When she got  older and began working, she would stop and buy him a coca-cola. He would squeal in delight as he took the bottle from her. When the bottle was emptied, he handed it back to Tonya. Tonya would rinse it out and set it on Avery’s shelf that hung on his bedroom wall.

The parents gradually turned the care of their son over to their daughter, as they became more involved in grown-up games. In fact, for some time now, Tonya was pretty sure Avery considered her his mom.

When the parents divorced, Tanya moved her brother into her apartment. She had hired care takers to come take care of him while she worked and when she arrived home, her evenings were spent with him.

Their lives seemed so perfect. A child born normal, a child born with handicaps. Each interested in the other. Each putting the other first. No one could ask for a better relationship than this one.

Tonya was coming home from work one day when she was hit hard from behind, by a drunk driver. Tonya didn’t make it. She died instantly. The care taker didn’t know what to do, so she called the police.

With a chain reaction, Avery was placed in a Disability group home. He was miserable. He acted out. He bit others. He screamed too much. He refused to eat. He didn’t know how to fix things. All he knew was he wanted his sister.

His refusal to eat sent him to the doctor’s, but even with the professional advice, he wouldn’t eat. In less than a month, he was standing by his sister, both holding hands, and they were  smiling and sharing a coca-cola with the red coke symbol on the bottle.

 

http://rmhealthy.com/10-signs-symptoms-autism/?utm_source=Google&utm_medium=CPC&utm_campaign=Google%20-%20CPC%20-%2010%20Signs%20of%20Autism&gclid=CO2BnaW2n9MCFUS5wAodSMgK7A

 

https://www.knowzo.com/health/autism/understanding-the-different-types-of-autism/3220

 

http://www.difflearn.com/product/ALL-PICS-Assessing-Language-and-Learning-with-Pictures/VB_MAPP_Assessment?gclid=CLz5m8i2n9MCFVi2wAodnxwOXw

 

http://www.autism-society.org/get-involved/national-autism-awareness-month/

 

Hello Dear Brother

Hello Dear Brother

I ride your scooter, you probably know
I use the walker, like you did bro.
I have a cane as you did too
Sometimes dear brother, I see me in you
You had an illness called MSA
Maybe I have it, some docs say
I have your Parkinson’s, no doubt of that
I tend to fall just like your past
People say this can’t be passed on to me
But my symptoms are very hard to flee
If you hadn’t gone to heaven so soon
We could share these scenes without the doom
I’m going to see your neurologist
The one who gave the song of bliss
He’ll ask me questions that he asked you
I’ll remember your answers that rang so true
I sometimes feel better because I know
You’re walking with me, every step I go
I feel so close to you these days
Because I resemble your MSA ways.
I love you brother, stay near me now
Because it is possible I’ll have to take that vow
To keep strong, and hold onto my faith
Just the way I made you when you paved your way
I’ll ask our God to guide me through
Just like the way I prayed for you.
And if the day comes I have to leave
Keep your promise and save a seat for me.

Written by,
Terry Shepherd

Cleaning the Mind

If you have lost a loved one; than you will be able to relate to this post. It is Saturday, and the plans I had made had been cancelled; so I decided to play on the computer. One thing led to another and soon I was looking through old photos I had saved.

These included images I had used here at WordPress, personal photos and documents from several years ago. I started looking at everything, and was amazed at how many sad quotes and sad things I saw on my computer.

It made me sad just looking at these. Al has been gone over two years. I still miss him bad, but I don’t need the images of angels, and death quotes etc. Without thinking further, I cleaned my photos. It took me a couple hours, but after I was finished, I had cleaned my mind of sad things.

I am ready to move on and didn’t even realize it. There are still songs, and coca-cola items and pictures of Al and my parents that can bring me to tears, but I am so much further along in my healing process that a year ago. Christmas is the hardest time for me, so all I have to do now is lean on my family and friends, and I, too, shall get through this holiday.

The painting below, is my latest painting I did last evening.

 

What a wonderful Gift to Receive

December  1st  is  the big day. The day to help my brother .  I  posted  last evening  but now  have to  give  you  the  proper  address .

 

Https://  www.crowdrise.com/givingtuesdayformsa/fundraiser  /terry shepherd

 

Thanks  dear friends

Terry Shepherd

 

A Letter to My Brother

Dear Al,   What makes it happen? I am going about my day and then you enter my mind out of nowhere. Suddenly I sit down on the floor, feeling exhausted. I wasn’t tired before so now why? Am I living over that terrible day?

I can see your face crystal clear. The house is quiet. I made myself get out and visit a friend today. I thought the day went rather well, considering it is Sunday. Sundays are still hard for me.

You and I used to climb in the car and just go. You would chatter and I would drive. You wanted to hunt things that you liked. You loved to eat out. Yes, Sundays are very difficult for me still.

I came home and fixed supper. I didn’t care for it at all. I tried a new canned food. asparagus, yuck, terrible. I had tried it once before, fresh and grilled outdoors. I loved it. I had a terrible time swallowing it, but food is limited so I made myself eat it.

I was walking through each room, looking for anything I could pack in a box. The truth is most everything is wrapped and packed now. I am down to what I use every day. I walked into your room and looked at all the boxes, then it happened.

I can still smell you. Your scent lingers in this room. I can picture the air mattress and hear the motor running. I look at the now invisible head of the bed and I know exactly where your head rested. I can see you so clear. I can still hear your voice, pleading me to tell God to take you home.

My gut starts aching, and my eyes feel warm with tears. Oh how I still miss you. If anyone thinks for one second that my moving will aid in me forgetting about my brother, they don’t know me at all. I will take him with me, I will never forget my dear brother. I can see the over head table at your side. I see your cars lined up on your bed as you requested.

I see myself feeding you sherbet. I remember you liked the rainbow sherbet the most and how sad it was for you and me when you could no longer swallow it. I remember how I sneaked baby food into a grown-up bowl and how many times you looked at me. I knew that you wondered what in the world I was feeding you, but you and I pretended that it was better than it smelled and you knew in your heart I had no choice but to feed you this type of food.

I can see you at your funeral. You were dressed in your favorite coca-cola pants and shirt. You were holding your favorite car and you were wearing your favorite coca-cola hat. You weren’t smiling at me though. The flag with the Coca-Cola emblem, which Al Forbes got for you cascades over you.  You looked peaceful and yet I felt you weren’t with me. Maybe you were standing above me, holding me up so I didn’t fall apart. You knew when you left you would leave a huge void in my heart which remains still today.

How many times will I repeat myself dear brother? How many times will the words, I miss you so much bud, I miss you so much, come out of my mouth. Do you hear me? Can you feel my heart busting at the seams out of pain for you not being here with me? I know, I realize you are happy now. MSA is out of your system, but I am selfish, if I could only see you one more time. I hate MSA with a passion. I have written a book about you bud. It is about you and Multiple System Atrophy. I want to share it with others so they won’t be as fearful as I was going through the many stages you went through.

I got up from the floor and stand looking around, tears still forming. I turn the lights off and shut the door once again. I miss you bud. I can’t wait to see you again. Love, sis.

 

 

 

 

 

 

 

Goodbye, I Will Always Remember You; A Tribute to My Brother, Alvin

I packed some more things today and then the phone rang. The voice sounded familiar as we talked. He said it was finished and I said thank-you and goodbye. My stomach started churning. I thought sure I was going to vomit. Everything from the past five months came flooding back to the front of my mind.

I finished what I was doing. I changed my clothes. I grabbed my purse and my camera. As I started the car quiet tears began to fall. I knew I had to keep it together or I would not be able to drive.

I drove the ten minutes and turned the car in between the gates. I drove slowly taking in the atmosphere as if I had entered a different realm beyond this earth. I stopped the car and turned the keys.

Silence came over me. I grabbed my camera and did what I knew I needed to do. Taking the photos and being satisfied with my work I walked back to the car, got in and began to sob.

Everything I had been holding back since March 24th at 8:30am came flooding down my cheeks. I cried like I have never cried.  I explained to my brother that I was leaving. I told him how I would never forget him but I must move forward in order to heal. I told my parents hello and I knew that mom especially, was so glad I could pay a visit.

I asked Al to keep his promise to save a spot for me and I almost felt his smile as I gazed down at his new headstone that was completed only hours ago. I knelt by Al and I touched the cold cement, but I knew my heart was warm as I felt the closest to Al I had since his passing.

I promised him I would come back and visit. I promised him that my daughter and son-in-law would look after me as well as he did. I promised him I would laugh one day again.

My job is complete. I cared for my brother with everything I had in me. I made sure he had as good of life and lots of laughter and fun as possible. I kept my promise to myself that he would have a nice funeral. I promised that somehow I would come up with the money for his headstone.

It was never a true job, but it had its ups and downs. I didn’t punch in and out on a time clock as his care never was less than 24/7. It was a job that tested my mental alertness, my devotions, my faith in God. It taught me more about compassion than any other job I have ever held.

As I walked up to my front door I turned around and looked at what I would soon be leaving. I swear I felt God’s arms around me. I know I felt Al’s smile. I love you buddy forever and ever.

Photos are:

Alvin’s new headstone with the coca-cola bottle and red cap

My parents headstone which rest beside Alvin

The clouds that I saw when I turned from my door and looked up.

 

 

 

 

 

 

 

 

Happy Birthday to You

Today is my brother’s birthday. He would have been 59. My heart is not healed enough so thinking about this topic squeezes my chest. I look at AJ, my new dog, and I also say Happy Birthday to him.

I don’t know when AJ was born, but because he walked into my life to help fill a void of Al passing, I think I shall place AJ’s birthday on the same day as my brother.

So since it is fairly nice outside. No winter boots or heavy coat here in Indiana today, AJ and I shall celebrate this double birthday by going for a walk. I will let him see more of the area where we live.

I will take my camera and hopefully be able to get a shot in or two. AJ is doing fantastic on potty training but walking on a leash is not something he has become used to. I think he is pretty smart, and this is the reason why.

I offered him a treat for doing his business outside instead of inside the house. He jumped up on me. The next time I offered him a kibble, he jumped; so I waited and with held.

When he sat down I gave him the treat. From that time on he had it. Each time he gets a reward of goodies he immediately sits. He wants to be with me at all times and he gets upset if he can’t see me. Oh it isn’t because I am so beautiful. It is because he knows I am his mama.

He fights going into his crate so when it is time I now place a treat inside the cage. He goes in with a little nudge instead of the usual bulldozer push. When I shut the door I offer him one more treat and praise him for going in much easier. He has now learned that pretty well. Just another couple of times and we may have that habit licked of fighting going in.

Al, it is going to be sad in my mind and heart at times today, but AJ and I will do the best we can at celebrating your birthday. I love you buddy and miss you terribly. I so wish you were here. Last year at this time so many friends and bloggers signed your birthday page. Today, I can go to it since I was smart and saved it, and smile as I see all the well wishes.

Hello my Extended Family, Yes You

Coming home from my daughter’s house was the hardest thing ever. Walking into a quiet home was disturbing to my soul. No sounds from the air mattress machine. No Hospice or caregivers. Just me and my thoughts.

I couldn’t take it. Too many stabs at my heart and too many tears so I had to make a change.

Starting yesterday, I painted my living room. Today, I painted my bedroom. My living room had not been painted since I moved here two years ago. This past fall I took two walls and put up that new paneling that looks like lime stone bricks. Yesterday I painted the third wall the color of the cement. It is a very pale chocolate. It warmed up the room and brightened the panel boards.

My bedroom was white and now it is pink. Somewhere between a soft pink and a pink, pink. It took me all day. I guess because I am getting to be older. Paint a little, take a little break, but it is done now and I am proud of what I have done. We shall see how my muscles feel tomorrow morning from having to pull out furniture from the wall and moving my bed from one wall to another.

Tomorrow, I am going to the room I have tried so hard not to walk into. Al’s room is the last room to paint. I bought an antique, light yet warm peach color. This room will always hold memories of everything that has to do with Al, but now it will also hold a part of me too.

It will be my antique room. There will be two, three foot lit Christmas trees. A rocker that I inherited from my girlfriend. My mother’s cedar chest. Of course Al’s TV is still there. All of his collection of cars will remain where they are. The many coca cola framed photos will come down and I will replace them with my Victorian children framed pictures.

Al’s big coca cola clock shall remain hanging and other pieces he loved so dear. For now the rest will be placed in his closet until I decide what to do next. I am looking for a short, old-fashioned couch to place in there. The idea is to walk in and feel warmth and vintage. I can watch TV or DVD’s or sit in quietness and enjoy the lit trees. It will always grace Al in my mind but since we are siblings, I figured why not add a little of me too.

I wanted to add a piece of information I learned today. The debt of the Social Security check is now been relieved. The treasury department interceded and stopped the payment to Al’s account. Therefore there is nothing to pay back.

The nursing home debt is still waiting and I am trying very hard to save monies back for it. I want to thank each of you that have donated to the debt on Pay it Forward. Thank-you so much. Every little bit is helping, let me tell you!!!

https://www.giveforward.com/fundraiser/k1d4/unexpected-2-expenses-from-my-brother-s-death

Also, I want to thank anyone who has purchased my first book, Dahlia. It seems people are purchasing it through Amazon.com. I can see the purchases but I can’t see who buys it, so thank-you. You know who you are.

Daily Prompt; Twilight Zone, ( I Couldn’t Help Crying While Writing This)

http://dailypost.wordpress.com, DP, Daily Prompt

Ever have an experience that felt surreal, as though you’d been suddenly transported into the twilight zone, where time seemed to warp, perhaps slowing down or speeding up? Tell us all about it. If you haven’t had an experience in real life that you can draw from, write a fictional account of a surreal experience.

Photographers, artists, poets: show us SURREAL.

I have not had a real experience, so this is partially  fabricated for Daily Prompt.

It is a Saturday evening. The day has been quiet. Al has slept 90% of the day. He did eat a small breakfast of baby cereal mixed with applesauce. For lunch he had sweet potatoes and I pureed a banana and some apple juice. He ate most of the main dish but had no room for the dessert.

I cleaned the house and did a little bit of rearranging. I tend to do this when there is no one to speak to. I checked on Al frequently along with repositioning him often. He is trying very hard to speak today, but his voice is but a low whisper.

Supper time came and I went in to offer him a bite to eat, but he refused. I immediately checked his temperature. It was hovering at about 96 degrees. His skin felt cool but not clammy. He looked at me with some prompting and still refused to eat.

This is alright. I don’t want to force him to eat. He will eat when he is hungry. As a last resort a half an hour later I offered him some of his favorite ice-cream, and he refused. Now I knew things were not right.

Al has put me through a few moments the past several days. I find myself wondering if he will be here in the morning, but when I get up, I am able to say a big good morning to eyes that greet me as I walk in.

I made sure he was still comfortable and not cold  and then went and poured myself a cup of coffee. I sat down here to the computer where I had spent a great deal of time tinkering with my sound on my computer.

I had plugged in my headphones a few days ago and ever since then I have not been able to hear sound coming from the speakers. I have tested and rechecked until my eyeballs started spinning.

I went back in to check on Al again and he was trying to tell me something. I leaned down as close as I could get and I figured out he was telling me, ” I feel sick all over.”

I told him I sure wish I could do something for him and that he didn’t need to eat unless he wanted to. I put Dukes of Hazard on for him and came back out to my cold coffee.

The only lights on in the house were my computer light and Al’s TV. I decided to play a game and was half-way  through the first one when I saw sparks coming from Al’s room. It was like lightning  shooting from everywhere.

The hairs stood up on my arms and my body froze in my seat. I stared at it and somehow I forced myself to get up and walk cautiously to his room.

When I peeked in I saw the most magnificent view I suspect I will ever see in my life.

There were several angels . They were in mid-air and they were surrounding Al.

At the head of the bed stood Jesus. He was lifting Al right out of his bed. He held Al close to him and I looked at my brother and held out my arms to him.

It was as if Al didn’t even see me. His eyes rested upon his heavenly Father. The lights grew bright in his room and the lightening show stopped.

I watched as Jesus lifted him up and over our home. Al was being freed of MSA. The terrible pain that he had been fighting for so many years was now over.

I wept into my hands. Tears of sorrow and tears of happiness that Al was once again going to be smiling. The only thing I ever wished for him was smiles and now as I looked up into the skies, I could see Jesus opening the gates and then the two of them disappeared.

I fell to the floor and praised Jesus for healing the brother I loved so dear. After minutes passed, I stood up and gazed around the room.

Stillness hit me. Silence filled every crack. I walked slowly around his room picking up one car at a time.

Tears rolled down my eyes as I knew there would always be a special bond between Al’s collection of cars and me.

I would treasure them for the rest of my days. I picked up his favorite Coca Cola pieces and cuddled them to my chest. Slowly I walked to the door and before I closed it behind me I turned back one more time and looked up to the heavens. I whispered to my brother, I love you bud. I will always love you. You filled my heart with wonderful memories. You taught me patience and understanding. You gave me wonderful memories. Take good care of him God. Al promised to save me a spot. Watch over him angels, until I find myself standing next to him.

 

Out Loud Thoughts

It is almost 8pm and I feel empty and tired. I took a nap this afternoon but it wasn’t near long enough.

Al is sleeping. He ate some baby food for supper and ate it all. Today he had some ice-cream for breakfast and lunch but ate very little. He is drinking a lot less than he did a couple of days ago.

The TV is on, but the quietness is so loud. I guess I am just writing to have a friend to talk to. The nights scare me. It is dark outside, the winds are blowing and we are expecting a few inches of heavy snow between tonight and tomorrow morning.

I am afraid Al will pass while it is just him and me. I vision walking into his room, checking on him and he is gone. Part of me doesn’t want to go check, the other part of me checks on him maybe too often.

I would give anything if I could only hear him talk to me. For him to let me know like he used to what it is that he needs. All I can do is cradle him in my arms, caress his hair and let him know I love him.

I look around the room and it is void of any life. Furniture sits stiff waiting for someone to flop down on it. The TV blares but who cares. Even the seat I am sitting on feels cold. I can hear Al’s TV on. Family Feud, but he isn’t listening.

He used to be awake through any Family Feud, but anymore as soon as I am done feeding him or caring for him he generally goes back to sleep.

Al has not had any visitors from heaven lately and the dreams I was having of our parents are now gone. I can’t seem to sit long enough to enjoy a show on the television. My mind is constantly wandering.

I could take a shower but don’t really need one. I could pick out some cute clothes to wear tomorrow but why bother. I could cook or bake but then Diabetics really don’t need the sweets and anymore food isn’t a joy any longer since Al doesn’t eat with me.

You know, I just hate eating alone. I don’t really know why. You eat, you finish, but it used to be that Al and I would laugh about some TV show we were watching, or we would watch Antique Road Show together and then plan a day to go to the stores to look for goodies.

Life sure is different now. There are still two bodies in this house, but yet it fills like there is one. Unless a miracle happens I won’t speak to anyone until tomorrow morning when the caregiver arrives, unless she gets snowed in.

There are so many of you that I wish I could meet. I know some of you and me would be the best of friends. I have met many fantastic people on here. So many of you don’t just comment, you actually chat with me. I look forward to that so much.

I guess this is the storm before the dawn. I did decide what to have Al leave this world with. He will wear his coca cola pants, a coca cola shirt. His brand new coca cola hat that Marilyn got him for Christmas. The flag that Al got for him will go on top of his casket. I will make sure that only red flowers the color of coke cans are sitting on top of the flag.

He will look like the brother I know and love so well. No stuffy suits for him. I don’t want to see someone I don’t recognize. I think I will add a couple of his cars in with him and instead of him holding a Bible, he will hold a car.

Please don’t think I am being morbid. It has been too much on my mind that I need to make last-minute plans for him. I never did get the money together to get his tombstone. He does have his plot and I paid for his funeral.

No one wanted to let me make payments on his tombstone so I couldn’t pull that off. I was shocked when I learned they are almost one thousand dollars for a simple one. I really wanted a plain stone that said the coke man on it. He would have loved that, don’t you think?

I have thought a lot about our half-sister lately. Scared that she will suddenly show up at the funeral, but not ready to see her. There is too much pain from where I have reached out to her about Al being ill and she has turned her back on me. She has not seen Al for six years.

Her son and I have pleaded with her but she won’t budge. She is still upset that she could not get the judge to see that she wanted to be the one to care for Al. The judge saw that he was in good hands with me. Ever since she has treated Al and me terribly.

Faye, one of our caregivers said she would take care of it if the sis came in and started acting up. I trust that she will because I don’t think I will be able to act like a lady if she comes in. It isn’t that she doesn’t deserve to see her brother, it is the drama that she could cause that has me on edge.

Nothing on TV tonight. I am watching some show, or listening to Caught on Camera. There is so much junk on TV. I tried watching the Hallmark Channel, but seeing loved ones in love, makes me want to cry.

I tried watching the Uplifting Channel and it made me feel worse, so I guess it is this or maybe the Sirrus Escape station, but honestly, I have had that station on all day and it doesn’t interest me tonight.

I sound like an unthankful creature don’t I? I think I am just restless as an Indian waiting for the bomb to drop.