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FASD and Autism…

I was recently diagnosed with Autism Spectrum Disorder, too. About 3 weeks ago. I have not said anything, here because I don’t know how I feel. There is one thing to think you have something, but then you are actually diagnosed with it. I went through the same thing when a doctor said I had all the characteristics of someone with FASD. I knew that you could have both. I actually wondered if I did. I have heard that people with FASD can have both. I know both can have a lot of the same traits, but I had a neurologist ask me a bunch of questions and he said not only by my answers, but in observing me, he knew I had Autism. Hmmm. Someone asked me how I felt. I didn’t even answer. I really don’t know how I feel about it. I’m not saying this is bad. I have got to know a lot of neurotypicals in my years and I can honestly say, there is not one I would want to be like…lol. So, I’m okay with being on the spectrum. When i wrote Autism Spectrum Disorder, the word that I kept staring at was Disorder. Really? This is a disorder? I want to look up what that means. Wait a second…okay a medical condition involving a disturbance to the usual functioning of the mind.

Okay. I will let that process.

Who says how we process and what we do is a distrubance. Okay. I get that things are not right. But who says that neurotypical brains are just that…typical?…

Just a question. Image

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Square peg

This fits for those of us who are FASD. So many times society wants us to fit into society the way they fit. FASD people are absolutely that different peg. We come in all shapes and sizes and we don’t fit into society’s norm. I know personally employers, friends, and even family will try to shape us to fit into what makes sense to them and we are simply wired differently and it ain’t happenin…lol…
The best gift anyone can give any of us with FASD is meet us where we are, love us right where we live. We all need to change and be shaped in life. Nothing wrong with that, but do it with us and accept our disabilities and allow us to function within those parameters.  Frustration is not our friend. When we feel like we need to be different than who we are or the people around us don’t understand us or that the harder we try, the more we disappoint you, meltdowns will occur. 
If we know you will allow us to be who we are, that we don’t have to be pounded into a shape that fits for you, then frustration will be down and growth will be off the charts.
We want to please! If we know you are not pleased with us, then we are crushed. Our entire being wants to be accepted for the square peg that we are. Square, rectangular, triangular, many shaped forms of FASD..
The world is blessed with many different shapes and sizes of people. Our creativity and love for others is so deep …that could be lost if you try to conform us into the rest of society. FASD individuals have a lot of great gifts and talents!!  We are great contributors in society!!

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!

Fits…surrender…acceptance

I had it in my head that I was going to go to the flea market to sell my photography. Last week. I had just about everything ready to go…except for me. I got hundreds of photos ready, framed and matted 30 of my best prints. My external brain helped me to think about everything I might need. We got order forms for special orders, a calculator, grocery bags so I can bag items I sell, extra money for change.

I put together calendars, mugs, notebooks, and other items to sell. My external brain helped me make a display board. I got a table for the display and filled two picture books filled with my photography for other options. 
I thought of everything…I thought.
I was getting ready and felt my anxiousness grow. I started thinking about talking with people, doing math on the spot, figuring different orders, and where to park. I knew my senses would be heightened with all the people, etc…which would add confusion. AND I knew I would be doing all of this without an external brain.
Now, I know I have said I don’t do anything new without an external brain, but I really thought I could do this. I mean, I did have it all mapped out. I have this thing about picturing things before I do it. It works a lot of times. 
I was a swimmer and a swim coach. Swimming was one of the things that calmed my anxiousness. Going underneath the water and being consumed by water from all sides so relaxing to me. A sensory thing, I’m sure. Like a weighted blanket feeling. I would swim for hours and I was good at it. (Not bragging…lol.) Hey, when I struggled at EVERYTHING in life and I finally found something that I could actually DO without struggling…I was thrilled!
As a coach, I had my swimmers close their eyes and picture themselves winning. We would do this leading into major meets. I would start them from the gun. Stroke by stroke they would go through the race with a win at the end.
I am an absolute believer in if you are determined and work hard enough at anything, you can be successful! I live it every day and so did my swimmers. 
Now, here I was, the night before I was supposed to sell my photography, by myself, at a market….I freaked. I pictured myself doing it. Over and over. I walked myself through all the steps. I paced. I tried to work through. My anxiousness did not subside.
My external brain (EB) saw that something was not right. I finally told her. I was even thinking about keeping my 16-year-old home from school to go with me the first day. My EB said, “why don’t we just go Saturday. The three of us will go. We will see what it’s like, figure everything out together so you are not so anxious. We will do this together.”
She asked me why I didn’t tell her. I told her that I wanted to do it myself.

I always need help. This time, I wanted it to be different.

See, FASDers DO NOT want to rely on others. We WANT to do it on our own! 
Surrendering that is soooooo hard!
I’m an adult. I want to do adult things…by myself. 
Oh, I got the routine stuff down. I can do that stuff all day by myself. I love the independence. I have no problem shopping in the same stores and going to the same coffee house. 
BUT…
Throw in something new…and I’m done.
I started to have my own little pity party. I even started to cry. I had to get to the point that I was okay having someone do this WITH me. I had to let myself get to the point where I would ASK FOR HELP.
I am not the best at asking for help.
“I CAN DO IT MYSELF” I want to scream.
Reality sinks in and I have to look at myself in the mirror…and again…surrender some tough stuff.
I can do anything the first timewith help.
Once I can rid of all confusion in a situation, it can become routine and eventually I can do it on my own.
I found myself angry. I got pretty upset that I HAD to ask for help.
I had to be okay with who I was and this disability.
Doing anything new is scary for someone with FASD. 
Yes, we might throw a fit about it.
We might get angry because honestly…we really want to do it by ourselves.
We are actually pretty smart people…we just have a brain that doesn’t work like everybody else.
AND we are smart enough to know this.

We watch everybody in the room understand what’s going on when we are confused.

We KNOW we can’t process like everybody else.
It takes us longer. We DO know that.
That is why we have to surrender to the fact of letting someone help us until we get it.
Once we realize that you helping us will help us get independent in a certain area, we are going to work that much harder.
We give 110%. 
Always have.
I was always one of the hardest workers in the pool.
I was always determined in the classroom despite my confusion.
It’s the surrendering and accepting that was harder for me.
With time, we get there…but we need our little fits along the way as we recognize and realize that we are different. That we aren’t able to do something that everybody else can do can be frustrating. 
I have to realize that if I don’t ask for help, I will just get stuck. I will probably not do it at all. That is an incentive for me.
Accept 
Surrender and ask for help. 
Problem solved.
Eventually do it by myself.

Side note: Added after I wrote this: An FASDer (RJ from Flying with broken wings) just said this to me about this blog…We have to remember that giving in is not giving up. That is AWESOME! Love it! True!