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Archive for the ‘death’ Category

FASD and dealing with death

I’m not even sure if I can write this, but I’m going to try. I have always been a survivor. I think that is a trait of being FASD. Really, we have no choice. It’s either survive…or die. We have so much to deal with each and every day with just the small, every day stuff, that major things can knock us out of the park, for a while.
We are so all about routine, but sometimes life takes a turn and routine and security is not a possibility for quite a while. We spend the next days trying to find a new normal, quickly, so we can get back to a new routine.
We all have what I call mile markers in our lives. Those moments  we were changed forever. …never to be the same again. It can be celebratory like a graduation or a marriage. It can also be a very traumatizing event. I have shared many times in the past about my dad dying when I was 11. That is probably THE most mile marker in my life. I was never the same after that moment and I was never able to capture any part of myself again. It was like time was divided on that day.
Just 2 weeks ago, today, my External brain, my daughter, and I were just doing routine. I had just come from the awards ceremony for my journalism awards, a few days before. We were sitting on the couch and someone who had just been to the nursing home, where my EB’s dad lived, came to the door. “Your dad is doing really bad,” they said to my EB.
We already knew he had been diagnosed with double pneumonia, the night before. Two days before that, he was fine. I mean FINE! Well, for him. J and I were checker partners. I mean, he was 84 and had alzheimers, but he could play five games with me. They were his rules and I never knew what color I was, but I went with the flow. Just to see his face light and get that cocky smirk when he beat me. He would tell the family that I was no good…lol. I loved that he was so proud of himself that he was winning. He had lost so much in life. It meant so much to me to let him have that. It was a weekly routine for me. My EB and I would go up to see her dad at least 3-5 times a week. I wanted to go see him. Go grab his favorite sweet, chocolate cream stick and coffee and we would break  bread together…lol.  It had become very special to me.
One thing about us FASD people, we have heart! We connect deeply with people. I mean—DEEPLY! Maybe people do not realize how much we feel, but we feel so much!! A huge problem is that we do not have the abilities to express how we feel and when trauma strikes, we shut down.
For a week, after that day, I fought shut down like I have never before. I gave a billion percent to my EB and her family. I didn’t have it, but I did it. I was constantly fighting overload, but another trait of those with FASD is we want to help and make a difference. We will do all we can to see that we can get past our disabilities to make that happen.
I loved J. J…not Jay… That was his license plate on his truck. No initial either. Just the letter J. He was an amazing man. A man of God and wisdom and for some reason even tho he had Alzheimer’s, he was able to talk about God for hours. He had been  a preacher.
J had trouble remembering and talking and getting fixated on things. He had a hard time connecting with people, but he connected with me. I think we had a lot in common after his stroke and having a brain problem, like me. Different, but we could speak the same language.
I did not leave his bed for just about 2 days. Didn’t sleep for about 50 plus hours. Didn’t matter. It was J. I loved him. I watched him go downhill and I prayed God please don’t take him. Please. All the family was there. At one point, one of the most joyous times while he prepared himself to go into heaven, the room was full of family. They all sang his favorite hymns and there were plenty of tears. He had five daughters and a son. A wife and a legacy.
When he took his last breath, mine was knocked out of me. I’m just starting to breathe again. It still does not seem real to me and that he can be gone. It does not make sense to me. He had been so strong. I understand. That’s a part of life.
Still does not make it any easier.
I tried to write a few times after his death.
All I could get out was the word, Death.
I never have trouble writing.
The next week we spent in a land of confusion, with funeral plans, calling hours and the actual funeral. The part I am most grateful for, the family let me put the slideshow together. The family gave me more and more pictures to plug into a program so it would be a special presentation. I was useful. Lots of times, we get lost in all of that planning and craziness.  We really don’t know what to do and that is the problem. A task like putting a slide show together where I could stay focused on one thing for hours and hours, off in my own little world, and be productive for the family. I knew I was helping and making a difference. It was something I could really do! And most importantly I could do it for J.
I loved him. Those of us that have FASD, are lost in a world where we do not understand very much and we are swamped with emotion. We are confused. We are lost in the whirlwind of all the planning around us. We literally just see confusion when everyone else knows what to do. The emotion and pain is so deep and we do not have the ability to express it. As I said with my dad’s death, just having someone put their arm around us and say let me do this with you. Let me explain this to you. Do you have any questions? Sometimes, just someone sitting with us is all we need. Sometimes just a hand on a shoulder with the question, “How are you?” is the best thing you could ever do for us.
It takes a long time for someone with FASD to recover from something like that. It take everyone a long time to get over a death in the family. But someone with FASD or autism, someone with a non-neurotypical brain, it puts the brain into shock.
I was actually proud of myself. At the funeral,  my brain went into meltdown. It had been a week of constant with no sleep and there I was sitting in a room with people all around me (which I would not do on a normal day) and I  was in a meltdown. I normally grab my head to stop the wires from crossing all over…lol…just a way of explaining it… I needed a release. I couldn’t take a bath. I couldn’t put my hoodie on to make it stop. I couldn’t do a thing, but leave the room. I did not want anyone to notice me at all and that I might be having a hard time, so I sat. I grabbed the sides of my chair with both hands with all of my might…and I prayed.
I wanted to give. I wanted to be there and screw my brain is all I could think about. I didn’t care what happened and how bad I physically felt, I was going to be there for my EB and her family.

We are the ones who will lie with a dying animal until it dies. We can’t give like everyone else lots of times, but we give all with our heart.

It’s easy to think we want to be a part of the wallpaper and disappear. In some ways we do, especially when we hurt deeply. The best thing you can do for someone with FASD is not let them go through a death alone. There are a lot of confused thoughts and I know I feel completely lost. 

Her mom, grabbed my hand on her way to see her husband at the funeral home, for the first time. She said you are going up there with me.
That meant everything to me. We laughed when she said it with that smile she gets. I said, “Oh, are you doing this because you know I don’t want to go up there?” She said, “I’m doing it because I know both of us are having a hard time going up there.”
She included me. She met me where I was and she let me meet her where she was. Several times during calling hours she looked at me and communicated how she felt about the moment’s events with a changed facial expression. I appreciated that. Even in her pain, she thought of me and included me and thanked me, at least a dozen times and let me know how important I am to her and her family. She let me know that what I did made such a difference in her life and in J’s.
“Thank you, Ann, for all you did after he died,” she said, “but mostly, thank you for what you did before he died. He connected with you.” That meant so much to me.
Having FASD is like having a brain stop in all major traumatic events. Our brain literally stops. Sometimes, that hand, that glance, that thank you, that small job that we are giving to help, means everything in the world.

My EB took me up to the casket for one last time. I cried. It meant everything to me for her to do that. The fact that I do cry now is awesome. I was thankful and blessed that my EB let me be a part the way she did. In fact, all of her sisters embraced me.

We already feel different. We already feel left out. We already are not comprehending like anyone else in the room. We are fighting overload. We are fighting emotions that cannot be expressed.
I never knew how much I loved him until he was gone.
J—I love you! You gave me so much in life. You spoke my language. You badgered me and I badgered you until we were both laughing. We like had this understanding between the two of us that I have not had since my own dad died. It was amazing. I will forever remember your smile when you double jumped me in checkers. The day you told me that you didn’t have to cheat to beat me…lol. That just made my day. The Bible stories. Psalms was your favorite book and David was your favorite Bible character. I loved listening to you about your navy days and your childhood days. You made me a different person. Your death changed me. Knocked the wind out of me. But your life changed me even more. Thank you J for letting me in during your worst days. Letting me connect with your hurts and pains and help to calm you at times (you helped calm me too) and just share that last year of your life. It meant everything to me.
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We are as good as our last five minutes…my story

When I was a kid, I was different. I didn’t look different. I was just different. I always had that feeling of being on the outside looking in. I had periods of when I fit. Not many. I didn’t even feel like I fit in my own adoptive family. I felt awkward.

I was quiet.

There were periods of my life that I fit or I guess you could say, I thrived.

When I was in a pool or a pool environment, I was in my element. I could do anything. I could talk shop I guess you could say. When I hit that water, there was no feeling like it. Plus, there were very few times I lost. I belonged to a swim team. I belonged to a relay team that was probably one of the best in Ohio.

People respected me in the pool. I would get out of the water and I was someone.

I was good in music. When I got older, I found myself in the band and I did quite well. I was first chair clarinet. Tuned the band every day. It was another place where I belonged. I wasn’t popular, but at least, I belonged in a group.

I was still quiet. I was still never the life of the party. I still stood back and watched everybody else enjoy. I was always afraid. I was always timid.

I decided to give my love for acting a try. I went on stage. I did plays in high school and on the side. I was actually good. I really enjoyed it. I loved being someone else different than me. I had people clap for me. I felt a part of. Putting a play together and being a part of the camaraderie with a group of peers was really something for someone like me.

You know, its not that we don’t want to be a part of. Its not that we dont want to be a part of society and do what everybody else is doing. We want to socialize. We want to jump in and do what everybody else is doing in the room.

We simply don’t know how.

Those are some of the things that saved me growing up. I look back at those times as some of the best times.

We all want to belong.

People with FASD have a hard time finding places they fit.

That feeling of being on the outside looking in is not fun.

There was a time in my life that everything seemed to fit. I was on top of the world.

I had the best dad in the world. He loved me more than anyone. He was my adopted dad, but he was God to me. He was everything. I was one of the best swimmers in the area and I traveled to other states to compete. I looked forward to that buzzer going off and me being able to exert my energy in a positive way and win…or come close. (Of course, I’m FASD…I have to win every time…lol. Perfection is the goal.)

Well, when I was 11, my world ended.
You know us. We don’t like change. We are not good with it. Routine is our friend.

My dad died.

My world as I knew it ended.

Everything ended.

Nothing mattered anymore.

That window of looking in at the world became more distant.

The only thing that saved me was alcohol.

Funny.

That was how I started the world and I found solace in a bottle.

Sad.

I was only 11 and started drinking. My adopted mom worked and I had the whole house to myself most of every day. My sister who was my…well long story…which I still don’t understand…all I know was I loved her about second on the list and my adoptive mom gave her up to foster system. “She was bad.” That’s what I was told.

It is such a long story. I don’t need to tell it right now. Like I said, my world was over. My dad was gone. My sister was gone. Swimming didn’t matter to me anymore. My adopted mom spent her days at work. I found myself in trouble.

What we want more than anything…and I can only speak for myself, (but I’m going to use we) we want to feel accepted. We want to be a part of. We want to feel like we are important. We beam over the simple things. Just ask us to help. We want to. Just ask put your arm around us and say “Good job.” We thrive on that stuff. We want to contribute to society in the most positive of ways.

I was the most confused kid. Nothing made sense. Not a lot makes sense to someone with FASD to begin with, but when my entire world was taken away from me…well…I had no idea what to do next.

I went from one of the best swimmers in the country to not even having the want to go to practice. My dad was not at the end of the block anymore with a towel to wrap around me. I no longer saw the proud look on his face when I won.

I didn’t have as much of a will to work in school. The following year, in 7th grade, teachers had no idea what to do with me. The school even wanted outside counselors and anyone to help me. I became quieter. My world became smaller. I looked around and I didn’t fit anywhere.

After my dad’s funeral, which I believed I was responsible for the fact that he was buried alive. I swore that he was still breathing. I sat in the funeral home and watched his chest go up and down. I tapped on a couple people to tell them, but they would not listen to me. When they buried him, I believed with all my heart that I let him be buried alive because I could not find the voice to tell anyone. I tried, but the more I tried the more I got shooed away in nonsense.

But back to after the funeral…I was in the living room. I can remember it like it was yesterday, I had no idea what to do next. I really was a confused kid. My aunt, my dad’s sister came up to me and said, “Ann, you need to be there for your mom and be strong. After all, he was not your real dad anyway.”

My world was crushed. She didn’t mean to hurt me. I really believe that. She was one of those people who just said things without thinking. I loved her dearly until she died, but those words are still with me today.

I shut down. I didn’t feel a thing anymore. Nothing could penetrate me. I stopped swimming. My grades were just about F’s. I drank on the side and I was only 12.

All I wanted was to fit in. All I wanted was for someone to come along side me, put their arm around me, and help me through life. My adoptive mom was too busy for that. Plus, she and I never really talked about anything after my dad died. We grew more and more apart. When she got rid of my sister, it was a wedge between the two of us until the day she died in 2008.

FASD kids have to face a lot of hardships. We have to face the fact that number one, our biological moms drank and that is why we are different. Number two through a hundred, we have to face the fact that we were abused, rejected, or given up into the system (many of us) and those are hard truths for those who do not have FASD, but put FASD on top of that and…wow…its hard.

I went to an older cousin of mine, at the funeral home, and asked her to sit with me. “I’m busy, I have to go,” she said.

I tried to get teachers to notice me. Some positive ways. Some negative.

I just wanted to belong. If there would have been adults who came along and said here we have this job for you come here and help us and they include me…I would have maybe found my way back.

I ran away from home. I continued to drink. I found myself in a world of a mess because I never felt that I fit. I never felt that I was understood.

I do have to say…in spite of it all. I never gave up. I know that does not sound right. Like I have said in previous posts, I am one of the most determined people in the world and even though I continued to drink…I wanted to make it.

I found it within me to get better grades. I dug down, inside my soul and found my way back to life.

There is one thing that I believe is univeral with people with FASD…we want to make it. Regardless of what goes on around us…regardless of how bad life is…regardless of how many hurts, pains, and rejections. We want to make it.

If anyone reading this can come along side a kid with FASD and try to help them feel included, then this was worth it. Give them a voice. Let them be heard. Give them a job to help you. Put your arm around them and say…”Good job.”

Call them family. That’s what we want. We just want to be included in family. We want that love and affection that so many have been born into naturally. Don’t ever exclude someone with FASD…it hurts…more than you know.

That window that we look through only grows dimmer and gets more and more distant the more people make us feel different.

Many of us were born failure to thrive. I was. The last thing we need is a reason to go back to that. We want action. We are constant thinkers. Our brains never turn off. It  can all go in the negative direction if we are not embraced by the positive.

Find the small things and smile at someone FASD. Make them feel like what they did was the most special thing in the world. We want to hear, “I’m proud of you.” We want to hear “Nice job.”

The more positive…the more we go toward the positive.  The more negative, the more we shut down. I heard a statement once that I believe is a million percent true. We are as good as our last five minutes…Wow.

Wow.

Let’s help people with FASD have a great next five minutes!