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Posts tagged ‘disabilities’

Really?

I have disabilities, but I am a person. I have feelings. I deserve respect.

I dropped my test off at my neuropsych yesterday. A secretary was there that I have never met before. I walked in and gave her the test. It was folded. I handed it to her and started to leave. She opened it and just kept looking at my answers. I said, “That is for the doctor.” She looked up and said, “What?”

“I guess I should have put it in an envelope,” I said.

“I’m the one scoring it, anyway,” she said back to me in a disrespectful tone.

Really?

She is the secretary for a neuropsychologists. Where is the sensitivity?

I was not told she was the one doing the scoring.

And if she is the one doing the scoring, she could have waited until I left before she opened it up and looked at it…right in front of my face.

I was shocked.

At first, I thought…oh boy, I did it again. I have a mouth. I should have kept my mouth shut.

I some friends and they said absolutely not. that was unethical. Others have told me that I need to say something to the doctor and let him know what she did.

I will. Next week when I go for an appointment about my results.

It’s interesting that my first thought was I wondered what they thought of my reaction. One friend of mine said, “They need to worry about what they did to you and how you feel. You are the client.”

True.

Just because I have disabilities does not mean they do not have to give me respect, confidentiality, inform me of what is going on, and treat me with common courtesy.

I wonder if they treat others like that.

Hmmm.

Not cool.

And to add…this is a very hard time for me. I am very sensitive about this. Everything they do and how they handle this is critical.

Really not cool.

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Executive functioning test

When a doctor told me I had all the markers for FASD, it was a hard one for me to accept. I have always been the type of person that has been determined regardless of circumstances or disability. I know I have one. I really didn’t need anyone to tell me. When i was five years old, my kindergarten teacher told my adopted parents that I had to go to a neurologist. There were already concerns. I had been a failure to thrive baby. I did not really talk. I was, very much, a late talker and I didn’t connect the way a lot of other kids did. I saw things differently. I didnt have a lot of the eye hand coordination and I didn’t have spatial sense. I still dont…lol. When the neurologists said that I had significant brain damage and I would not graduate high school, they did not factor in my determination. Have you ever been the type of person, that everything you do, people look at you in this surprised look like WOW, I never knew you could get a masters. I never saw you as a mom. I never saw you being able to do _______________. Well, most of the time, I surprise people because they only see the disability.

My boss would say, she knew I could do it. She actually is a special ed teacher for kids on the Autism Spectrum. I always knew it was a possibility that I had that, too. I was told by one neurologist as an adult that it was most likely Autism, but he dismissed it to look at other things that were not important. I did not even go back to him to find out what he wanted to do. He was disrespectful and I was not impressed with him.

Safeties need to be in place in order for me to accept someone testing me for disabilities. Now, that was there when I was to a genetics doctor at Akron Children’s who said that the FASD was there.

Now, two years later, I decided to go to another neurologist. Some of our kids, from the school, had gone to him and he is able to diagnose autism. I went and it was pretty much 100%. As my boss and best friend says it, about 110%. When I was there about a month ago, we discussed the more cognitive issues that could be related to FASD…besides just the Autism.

Executive functioning can be in both FASD and Autism. I didnt even know really what Executive functioning was. I didn’t know what it was when I went for more testing last Friday. I sat in his office for three hours. He timed me for just about every task I did and I realized that I am a pretty slow processor and I do not have a very good memory…lol. He started off the tests with tasks like reading 20 words to me and I had to say them back. I could only say like the first three or last three because I was not able to remember the rest. He read them again. I maybe remembered one or two more. We did it again a couple more times. He then put them into categories. I could remember the ones I already remembered. But not any more. then he listed them back to me asking if any of them were on the list I may have forgotten. There were a couple that were a maybe, but for the most part…not so much.

He had me say words that started with the letter A and I had a minute. I have to be able to hear something or look at something in order for me to bring it out of my brain. I cant bring it from nothing. So, these were my words…a, an, am, and, animal,….he said ‘keep going’ i saw a book on his desk with the word administration on it, so I said that word. But that was it. He then said ‘ok now words with the letter ‘f’…go.’   First thing out of my mouth was, ‘can I swear.?’ He said yes. But I couldnt say it. But I said words like…fun, freak, fork. that might be it. He said ‘keep going,’ but nothing.

He told me to say animals and I could do that a little better cuz I love animals and actually love to take pictures of them and it is a passion of mine so I had that more imprinted on my brain. I probably listed at least 10.

He read word problems to me….um….he lost me at the first word. He could repeat it once, but other than that, I had to solve it….I did not do well on this. I was not able to process what he said. Words blended into numbers very quickly and within seconds, all I heard was blah, blah, blah. I just passed on most of those.

He had me do patterns. I realized that I could do the patterns, (I think–dont know results yet) that were on top of each other, like 2 blocks on 2 blocks. easy to see.. but the patterns that were in a long series, i could not retain from beginning to end to get the pattern. it was way too hard and I’m normally good at patterns.

SPELLING. Hey, I’m good at that. I’m a writer. I was a journalist for many years. I think I did great at that! All the writing I have done has imprinted words on my mind that I really am good at spelling.

Patterns on the computer. Not only does it say incorrect on the screen, it makes a noise that lets you know that you really dont get it. i got most of them wrong…lol…So, I heard that noise reminding me that I got it wrong about a hundred times.

I actually looked up executive functioning because I had no idea what it was. I guess you can have a high IQ but still not be able to know how to use it. There are people who have a lot of degrees but dont have a job because their executive functioning is so low. Mine is pretty low, but I have always made sure I had the supports around me in order to watch or figure out what to do. I do the things I do. There are a lot of things I really do not know what to do. If you tell me step by step or if I watch you carefully or you visually show me, I can figure it out.

We will find out the results, next Friday.

I will let you know. Image

Be in control of your disability so it does not get control over you

Living with FASD is suuuuuch a mix!!!! There are things we are amazing at. We thrive there. When we live where we thrive, it is almost like there is nothing wrong with our brains. When we start to venture outside of that bubble, we really feel our deficits. I have been stretching and stretching myself lately. The more I stretch, the more I am feeling comfortable in areas I would not have before. I am finding that I am better at things then I thought. I am very proud of myself because I just keep taking one step further outside of my bubble. I started a year ago working in the office at a school for kids with Autism. IDEA House Educational Services.  I stayed in the office most of the time. I didnt even go to meetings. I eventually started going to meetings, not talking, but making myself go. Fortunately, I have an amazing boss that understands disabilities. She let me work into my job. She understands, as I have over the years,…not to push faster then my disability can handle. I set myself up for failure when I do that. I gradually worked to where I am now. Getting comfortable was key to me. If I don’t feel comfortable, I’m not going to grow. If I don’t feel safe, I’m not going to grow. If I work outside of my comfort zone way too fast, I’m going down for the count. Soooo, I took very small steps! I went from just working in the office to spending more and more time out with the kids. There were quite a few crisis situations that moved me outside of the office. With my counseling degree and ability to meet people where they are, I was able to help kids out of crisis. I found myself being out more and more with the kids and less in the office. I was asked to come to more and more meetings with the director of the school. Now, this was a hard one for me. I don’t do closed rooms well. I don’t do people sitting at a table well. I don’t do shoulder to shoulder well. Processing just shuts down. I have learned some things about myself in order to be able to do meetings better than I never knew. I just am not able to take in much information at once and that is why I lose something. I can talk on the phone well. Move someone in the room and I lose the talking. If I look down, I can talk better. Once I start to try to keep the eye contact, etc. I just lose the mouth. I am constantly trying new things to help me be able to stay in the room as a person with disabilities and keep up with NT’s.

I have always been the type of person who never gave up. I always worked very hard to stay in the game. Whatever it took. I recently, just visited a cousin of mine I have not seen in years. This was the first time I have even had a real conversation with her. We touched on how I just didnt talk growing up. I was the one on the couch where everyone was interacting and the more that went on, the more I shut down.

Trapped inside myself is what I called it.

If I tried to talk when I was just not able to process fast enough, my mouth would literally just stop. I am the one who needs to be in a room first, get the first chair to make sure I’m in a secure place, to make sure that I can be in charge of my disability. If I lose that ability to be in control, it starts to get control over me. And before I know it, I’m done.

Baby steps has allowed myself to be successful. I know when I’m stepping too fast. Now, I am assistant director where I work and I am going to be an assistant teacher in social studies. This is a passion of mine and i have no trouble preparing. Stopping preparing is another problem…lol.

I also do the newsletter and the website for the school. So, they keep me very busy. See, we can do it. I just have had to find ways to do things and I have surrounded myself with people who allow me to not get ahead of my disability. Very, very important!!

I also make sure I do not venture into areas without supports! As soon as I do, I instantly become lost. I have no idea what I’m doing. The last couple days I have had off and I was doing some things that most people can do, but I struggle with. I kept my daughter close and we did it together. My external brains are crucial. I do not feel safe at all if I don’t have one with me I can completely trust. They got my back. They are my ears, my eyes, and they are the ones I look to a lot to make sure things are okay around me. If i don’t trust them, then my fears instantly go up and I just have to leave the situation and go right back to a safe place.  I have to respect my disability! I have to not let it get ahead of me.

Having the right safeties in place allow us to thrive! One baby step at a time!