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Archive for January, 2013

At my birth, but not my father

A man who was at my birth, but was not my father died this weekend. A man who treated me with dignity and honor. A man who I really did not get to know over the years, but always respected. The loss of what could have been is what I grieve. A loss of a conversation, answered questions, a past that might have been more understood. He carried my picture in his wallet at one time. He let me know I was accepted in his eyes. A barber…lol. He cut my hair in his basement. A man that was married to my biological mom and treated her well. Goodbye Ron P. I wish I could have known you better. I thought since you were at my birth I should honor you on your death. You might not have thought you did a lot in my life, but you offered me that hope of acceptance in your eyes that I will never forget. The day you opened your wallet and showed me my picture to let me know you kept me close even from afar, meant the world to me. Thanks again Ron!
 
 He has always been a person who left a much needed lasting impression on me. He knew how much I was hurting as a kid and all it took was for him to open up his wallet and let me know he accepted me as his…or an extension of him. Not my father, but at my birth. I needed to be at his death. Meant a lot to me to let him know that he made a hurting kid feel accepted and loved. The smallest of things can leave a forever impression.
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One step at a time! And then repeat.

I guess I’m really having a pity party at the moment. For the most part, I just keep going and I don’t let the disabilities ever ruin my day. Today, I am feeling sad. That’s the best emotion I can come up with. I have a phone now, like everyone else. I mean a Droid razor HD. I do have trouble with the basic stuff, but I found a ton of apps. All kinds of games, etc. I wanted to play them and enjoy. With me having the mind I do, I like the peg game and games that are simple one slow task for me to do and figure out as I go. I can’t think fast and I found out tonight that I really don’t understand even the easist of games. I have to ask my daughter how to do them and even the simplest of just move this mom or that reminds me of just how much I don’t understand. I was left to try on my own and I had no idea. So I went from game to game to game. I must have tried 10 or more, same result. Plus with all thats on there, my attention is about 10 seconds so I go from thing to thing to thing and actually instead of getting stuck on any one game, I got stuck on trying to figure out a game and moving on to the next. All day, I have moved from topic to topic or thing to thing and just felt lost. I can kind of do the kid games as long as they are very easy. I guess, right now, I just want to be like everybody else. even teens can do the games I can’t. When you see a 10 year old  connect and process and execute in the amount of time it took me to just begin to see it and process…not even close to moving to execute…it takes me about 20 seconds to think through something to start to begin to move to figure out what to do and then it takes me several moves of doing something wrong before I figure out the right way. So, what takes a 10 year old to do in 10 seconds it takes me maybe a good minute or so. And many times, I have to just stop the game because I simply am not able to grasp it so I have to move on. My brain is SLOW! I think that is partly why we have to have very little to process around us to do things. when there is a lot going on in the room, I can’t do anything I have to process. I need space, quiet, and a lot of time to do things. Each thing that is added to the room, takes away from my ability to do something.
So for teachers teaching kids like us, the best way for them to learn, is repeat repeat repeat, help them execute it with them. Have them try to repeat back. If they don’t can’t do it ONE STEP AT A TIME! Let them do that step. THEN move on to the next. Just know directions are not our friend. Following simple directions is very very hard. I always looked around at others before I could figure out what to do next. We are great observers. What am I supposed to do? Look to your neighbor and then you will know. Cheating? no not really. we just don’t know what we are supposed to be doing. Don’t understand teh concepts on the page. Need a lot of instruction and time to figure it out.
We could be removed from the room with a one on one instructor making sure we are understanding. Do this enough times on one step, we will be ready to move on to the next.
Explain first step–have us say it back—have us do the one step—Repeat
Explain second step–etc.
Then speed up that process SLOWLY.

Do you know what its like to see everybody else in the room get it, but you?
Everybody else is on step 5 and you are just getting started on one.

I tried to line dance before.
Embarassing!!!
Everyone was on step 10 and I was still trying to figure out step two.

Teachers, parents and caregivers…your fasd kid that looks like they don’t know what to do,
you kid that is trying to do what everyone else is doing in the room and continually looks around…they really dont get it. They are not making it up.
FASD is significant brain damage. The areas of the brain that are affected…don’t work that great, if at all. Unfortunately.
Just do it with us until we are able to do it slowly by ourselves.
It reminds me of the Bible story…Moses.
He told God he could not even speak eloquently. God gave him Aaron to follow. Aaron did it all at first. Moses watched. Then they did it together. Then Moses was left to do it on his own. It was a process. A long one. If you rush it, we will be left too soon and then nothing was accomplished. If you do it our pace, then we will get it and be able to do it on our own. It might take hours, weeks, or years. But do it as long as we need then we will be ready to move to the next step.

Details are a blur

I watch a movie and hear chatter–in the big picture.
I rarely hear details.
My family watches a movie and they understand all the fine print, I guess you could say.
I’m lucky if I get the main ideas of the story.
When I am in a group of people, I hear random words.
Sometimes, I can put them together enough to understand what they are saying, but lots of times I need it broken down for me, If I need to understand.
If not, I spend my time looking as if I know what they are talking about.
I zone out a lot becasue the world is just too busy and its way too hard for me to take it all in.
Zoning is my way of balancing out the craziness around me.
Processing is not my friend, I guess you could say.

The funny thing is, I can see if someone has a different hair cut or if something of mine, is out of place. I can see when someone is ready to cry, but I can’t hear remember half of what goes on in my day.
Short term memory is not my friend.
I tried to play a game with some friends and could not retain what happened just a few minutes ago. I sit and watch them all laugh and enjoy the activity, and its just too much for me to take in.
I’m confused while I watch the world go on.
Details are a blur.
The world seems to whiz by and doesnt wait for people like us.
It goes in fast forward half the time.
I literally sit there and watch it go so fast. it’s like God has his finger on the fast forward on the remote control. Words and details just are so fast there is no catching it all.
But I love what I do catch.
I love watching the expressions and people can actually be quite enteretaining when you dont pay attention to the details.
We try to keep up with you, but maybe sometimes you can slow down and put your life in slow mo when we are in the room.
If you don’t, dont get upset with us if we dont get all the details.
Don’t get upset if we are not able to retain what you told us long enough to do what we are asked.
We watch all around us to know what we are to do next. If you do it too fast, it’s not there for us to know.
Slow down.
Details are a blur.
We are trying to read the fine print, but we just need you to go a littler slower.