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Aside

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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Is the one with FASD caught up with the rest of the room?..my story part 2

Synapses. Hemispheres. I’m not even sure what all that means. I know it has to do with the brain. I know that my left hemisphere and my right hemisphere don’t work together like they are supposed to. There is a disconnect.

There’s a lot of misfiring going on in there. I don’t need to tell you how much  of an FASD brain is affected. I know it’s a spectrum, but we do have many similarities.

One of the biggest things we don’t like is change. We do not adapt well and we need lots of time to process when a change is coming.

When I was 11, my dad, my world, my everything died and…as I referred to in (a previous post)…I had no idea who I was anymore.

It was November 25. It was like any other day. My dad leaned over my bed and kissed me goodbye before he went to work. I got up and went to school. I came home, ate, and went to swim practice.

I did it every day for years.

It was my routine.

That particular day, my neighbor came to pick me up from practice.

“Where’s my mom?”

“She’s at the hospital with your dad,” my neighbor said. “They are just running tests. Nothing major.”

She drove right past my house and went to hers.

I can still remember what was on the television. Happy Days.

Laverne and Shirley was starting and the phone rang.

My neighbor’s daughter hung the phone up and told me she could take me home now.

When we pulled in there was a lot of people. My neighbor did not even say anything at all to prepare me. All she said was ‘Bye.’

I went in. Looked around. I saw all of my neighbors. I saw my two aunts (my dad’s sisters.)

Now, I have FASD. I have a hard time processing to begin with, but this was a situation that I had no idea what to make of it and noone (even without FASD) wouldn’t have been able to.

They say that FASD people are at least half their age. So, at 11, I would say I was around 5-6 emotionally. Not sure. Sometimes I feel that now.

I looked on the couch and I saw my adoptive mom sitting there crying. I don’t know why, but the first thing I remember saying was, “Is it dad?”

She burst in tears and shook her head.

“Is he sick?”

Same response.

“Could he die?”

Same response.

“Did he?”

Same response.

I don’t remember anything, but a room full of people looking at me and they said I threw a book.

Death? I really did not even understand death. I just knew that meant I would never see my dad again.

I spent the rest of that night in my room by myself.

The next morning I actually got up. It was the day before Thanksgiving break.

I got ready for school and came down and said, “I’m ready to go to school.”

My adoptive mom and aunts laughed. “You aren’t going to school. Your dad just died.”

I went back to my room.

I ventured down and spent the rest of the next three days playing the same song over and over.

The Entertainer.

Have no idea why, other than the fact that it calmed me. Repetition. I must have played that song a thousand times. I can’t believe someone didn’t tell me to stop.

All through the next few days, with people coming over and funeral planning, etc. Not one person took the time to sit down with me to make sure I understood what was going on.

People with FASD can often feel invisible. We can be in a crowded room and feel like we are the only ones not included.

All it would have taken was someone to sit next to me, someone in the family and just sit with me. Not let me sit alone.

All it would have taken was someone to ask, “How are you?”

FASD brains are confused brains. There is so much that goes on around us and it is so hard for us to process all of it. If life could operate at our speed, it would be so much easier.

We understand better when people slow down their speech.
We understand better when people make sure we understand what they are saying before they move on to the next point.
We understand better when things are broken down into smaller increments. One sentence at a time, sometimes.

We want to understand.

It’s like being in a tornado and asking what did you see and hear when you were in there.

Good luck.

I remember sitting in the room with all the plans of my father’s funeral, etc. going on and seriously hearing a bunch of chaos, not making sense to any of it and not one person taking any time at all to prepare me before I went into the funeral home for the first time.

Noone told me I would see my dad in that state and what to expect.

He died instantly.

Massive heart attack.

He was only 55.

He was my life.

I said in a previous post that I started drinking when I was 11.
Well, that is not altogether true.

Yea, drinking alone, it’s true.

My dad would always come home and from the age of three I remember sitting next to him with my little shot glass and his beer. It was our time. No…lol…I don’t condone him giving me beer in a shot glass at age three. Not at all. I just know that it was some of the best times of my childhood. Sitting quietly next to my dad, on the couch every night drinking our beer, was our thing.

I know he didn’t think that he was hurting me and I know he didnt realize then as much as he did later just how much of my brain was already damaged from alcohol in utero.

He loved me. He was the best dad. He was the only one who got me. Who met me where I was and just would sit quiet with me. During those times, it was as if the world slowed down to my speed.

We need help having the world explained to us.

Just last night…lol…my external brain (my choice of wording) and my 16-year-old daughter were watching NCIS. They were really into it. They were making all kinds of comments, etc. I was so lost. I had no idea. I try not to stop the show too frequently, but in order for me to understand the show completely, I have to stop and ask what just happened, what does that mean.

If we could slow life down to slow mo…we would be fine. We just don’t process that fast.
We need constant interpreters.

The important thing is, if you can be an interpreter for someone with FASD, be one.

Don’t let too much go on before life is explained.
Make sure the one with FASD is caught up to the rest of the room.

I thank God every day for my life interpreter’s.

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!