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How do I say this? Yesterday pretty much knocked the wind out of me. I can do two things with it. Either I can let all that the neuropsych guy said and let it take me down for the count or I can continue to do what Ive always done and let it empower me even more. I prefer to let it empower me. He even said “hats off to me with all I have accomplished.” I have proven even more to myself that most people would not have accomplished all I have with my brain. I just never saw that ‘not’ doing it was an option. When they told me I would not graduate high school. I just said watch me get a masters degree. When they told me I would never hit a ball. I said i will practice until I get homeruns. I could go on and on. I have always found a way to compensate. If I cannot do it this way, I will find another way. I am one determined mother ______. if I can say that. I am having a little bit of a hard time today. I never expected him to say a couple of the things he said. Trying to process.

I looked up where my IQ falls. It basically described me to a tea. I was surprised. This is what the definition of it said under the IQ I just found out I have. Above the threshold for normal independent functioning. Can perform explicit routinized hands-on tasks without supervision as long as there are no moments of choice and it is always clear what has to be done. Assembler, food service.

I know that as long as my day is without choice and everything is spelled out to me from the first moment of my day until the end, I am anxious free and fine. Give me choice and give me a day where I am just supposed to get thigns done but it is open ended…I will accomplish nothing at all. So…it is exact. That made me even sadder. I thought I had a higher IQ. But the thing is they figured in my working memory which he said never developed and my adaptability or whatever that is never developed. So with all that said…he did mention disability.

You know, I’m a tough one. I will never ever give up. When he showed it to me, I was not really processing it. I didnt even hear the number he threw out there for my IQ. My friend, who went with me, mentioned it later in the meeting and I said, “huh?” I said thats my IQ? thats really low.

I looked at his paper which showed in a nutshell that without a doubt 100% I have Autism and some of the stuff that was in there with all the cognitive stuff, etc. could have happened in utero. Hence what I thought with the FASD stuff. But he did add say that the social component does not have to always be there to the extent that I have it with ASD. That the social anxiety with my ASD is so off the charts that he actually gave me that diagnosis as well. So,…this is another day.

Just a day.

I said to him…well all I want to know is how I make this all stronger. He said give me one thing you want to work on. I said my memory. I have like a very low ability to do short term memory. After repetition I can retain things a little better. that is why it is harder for me in the reading, as well. But I have a great word knowledge…I knew that…lol…and I can write…woohoo….

But the ability for comprehension and retaining I do need to work on so he said I need to work my brain because it simply did not develop. The frontal lobe part of my brain did not develop wehre I can bring forth information, etc…

Anyway, he said go to luminosity.com.

You bet I will.

I will do whatever I can to make my brain stronger.

This was harsh news, but news that I know will just make me stronger.

And I said to my friend, it just proves how strong I am. How I was able to accomplish these things that I never should have been able to. I just found another way.

And I’m not going to stop.

just another day.

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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

Stigma? NO! It’s critical to our future

I am not ashamed to have FASD. Not to put FASD on an IEP causes a child not to get the exact help that they need. It’s not a stigma to have another DD.

I do not wear why I have FASD. I have to deal with the fact that I have it.

I do not lay around at night mad at my biological mom cuz she drank when she was pregnant with me. I’m more mad because people choose not to admit that this is a real thing. We are real people.

It’s not a stigma. FASD is NOT who we are!

If a child with autism gets a dignosis, they get all the helps in the world. They get an IEP that has all educators need to know in order to help that child.

FASD? Nope. not putting that on the IEP. I hear that from caregivers.

They just want FAS on the IEP so their child get the proper help.

A doctor is not going to help a cancer patient with a heart medicine.

In order for people with FAS to get the help they need, they NEED the proper diagnosis!

It’s not a want. It’s a need.

It’s critical to their future.

FASD? What’s that.

Okay this is how it went today. I went to Barnes and Noble with my daughter for part of our mothers day outing. I went up to the customer service and asked if they had a way for me to look up a certain book. He said yea I can do that from here. I said I would like a book on Fetal Alcohol Syndrome.

“What,” he said with a complete puzzled look.

“Fetal Alcohol Syndrome.”

“Fetal…?”

“Yea. Fetal Alcohol…”

“Is that the name of a book?” he asked.

“That’s a topic,” I said.

“Oh, no. We don’t do topics. I can only put in names of a book. What is it again?”

“Fetal…”

“Well a few books came up in our system, but we do not have any in the store. Sorry.”

“Okay.”

He looked at me like I had three heads.

Why is it that there are more people with FASD than autism, and it is one of the worst DD’s out there, but yet people still have not heard of it and they still literally have no clue how to work with people who are FASD.

I mean NO CLUE.

We wonder why there are no IEP’s with FASD on them.

People really really really need to get educated about this.

I would like to know how we can do that. We need an FASD ribbon.

I know we have an FASD day on 9/9 at like 9:00. So it is like a FASD moment. It represents the 9 months that a woman is pregnant.

You say autism and people no exactly what you mean.
You say Downs syndrome and everyone knows.
but Fetal Alcohol syndrome?

What’s that.

Wow

Communication

I’ve always been quiet. My brain is not! If I could say what I think, I would never shut up…lol. I find myself in situations where everyone is talking and I seriously cannot connect my brain with my mouth so I appear quiet or shy and that is really not the case. Well, I might have a little bit of those, but really I’m like that because I know that my brain is not cooperating. It can be embarrassing to have a room full of people waiting for me to put my sentence together. For some reason, putting my hand on my head helps. I really have no idea why. Have always been that way. If I put my hand on my head and breathe in deep, I can gather myself together enough to form sentences.

Putting my hand on my head calms me. My insides are anxious and just that feeling of a hand on the head is an instant calm, even if it is my own.

I think one of my biggest frustrations is communication. I could walk around with a pencil and paper and communicate all day, but that is not how the world does it. We are expected to do what the rest of the world does. What if we all walked around with different forms of communication. Not just speech. A lot of my frustrations are simply because I am not able to communicate what I want or need to.

The people who I like to be around are those who help me to communicate. They are patient. They don’t force me to tell them what I need to in their allotted time. They don’t let me feel small because I am having a rough time getting the words out.

Finding ways for someone with FASD to communicate can really alleviate a lot of frustration. I know I can act out, get agitated, get angry just because things build up and I am not able to communicate the way others do. We really are forced to be in a world where walking around with a pencil and a paper to communicate would just be looked at as weird.

I wish society was more accepting of disabilities. The numbers are growing that having a disability is almost the norm. There are so many people with autism and FASD that you would think that there would be different options of communication that are acceptable by now…lol. I know thats a stretch, but let an FASDer dream. I would love to just whip out my pad and pencil while in a mall talking with friends and just write so I can say exactly what I mean instead of sit there for a minute trying to get my brain to connect with my mouth to get the words out. and even still, not even say exactly what I mean, but bits and pieces of what I wanted to say. It’s okay. But it really can make a day in the life of someone with FASD, very hard.

It is crucial that the FASDer have people in their immediate circle who can help them to communicate. Let them find their way to communication. Help bridge that gap.

Encourage drawing, singing, writing song lyrics, photography, and writing. Let them build with legos or find other creative ways to express who they are and how they see the world.

I know for a fact that our silence brings about a deeper thinker. We are very deep thinkers and we connect with life in a way that others do not. That adds to the frustration, I think. I see so much. I see pain deeper. I see heartache in a way that I feel it. I want to convey people’s pain and the way I see things so I start shooting my camera or writing because I feel this stuff and I can’t find another way to get it out, but to do it creatively. It really helps eliminate some frustration.

We get stuck. We don’t want to be stuck in our frustration where it gets to the point that we act out regretting later what we did. My thing is punching walls or myself.

I hate with all of me to be stuck. I want to always be moving forward and I am constantly trying to find a way to do that. How can I learn. How can I move forward. This didnt work. This didnt. work. I will work until I find a way to make it work. How can I do it?

How can I communicate? Help us find ways to do this. Sit down next to us. Quietly. Meet us where we are. Let us calm and find a way to tell you what we are feeling. Let us tell you how we see the world. Hand us a pencil and say write it down and tell me. Draw it. Write me a song or a poem that conveys what you want to say. Is there a character on tv that you can relate with that you can share to tell me how you feel? There has to be a way and that way has to be okay for everybody in the room.

Sometimes it is nice when people (society) comes to the world of those who have disabilities and they are forced to communicate the way we understand instead of us having to always work outside of our brain abilities just so its socially acceptable.

Helping us find ways to communicate equals a calmer house. Equals a calmer FASDer or someone with autism. It means frustration will melt before a meltdown or a blowup. When you see a meltdown coming or a blowup, hand them a pencil and paper and ask them to tell you exactly what they are feeling. Write. Do whatever you need to tell me how you feel. Do it please because I really want to know.

Proud

Being someone with FAS is a conglomeration of emotions. I didn’t find out until I was an adult. I knew I had significant disabilities. I Knew what neurologists said, but I stayed in denial for a very long time about how significant. I mean, does it really matter what the professionals say when you weigh in determination and heart? No, not really.

I know they know all the medical reasons to why I do the things I do. I know they can explain why my upper lip is thinner and why the area between my nose and lip are flatter than its supposed to be. They can tell me why my pinkys swerve inward and why my eyes are the way they are.

When the genetics doctor looked at me and said alcohol played a significant factor to your disabilities…its like the world stopped. She didn’t even hesitate. She knew. She looked at my baby pictures and looked at me as an adult and she didn’t even have to do further testing. It wasn’t even a maybe.

There is a spectrum in Fetal Alcohol Syndrome. To find out that you are full blown FAS made me face some hard realities.

It did explain a lot. it connected dots for me. I understood why I had struggled my whole life. Why I couldn’t DO things other kids could do growing up. Why I was not able to function in the adult world like my peers. Yea, I got it.

It made me face some hard realities. DD? Developmentally Disabled? Really? Get a social worker for me so I can get services for being FAS?

Thinking you are FAS is a lot different than a professional looking in your eyes and saying “You, without a doubt, are FAS. That is a whole different level of acceptance.

You know, at first, I don’t even know what I felt. I know I got quiet. Didn’t feel like talking about it. Felt loss, grief.

To know that you will NEVER have the brain that others have. To know that I will NEVER be able to overcome these disabilities. To know that my mom drank and that is the reason…

Cry.

Hard things to face.

I believe that my biological mom didn’t do it on purpose. Forty years ago, they didn’t know the stuff they do now. Plus, she was not one that would have been taking care of herself. Didn’t matter to me. I loved her until she died. I was loyal to her. Even though, she never really recognized me as a daughter, I still recognized her as my mom.

FASDers have to face a lot of different obstacles besides just the disability. Hurts, rejections, and abuse often come along with it. Many of us are adopted young to great families and the hurt stops, but some of us are not.

Some of us have a lifetime of pain, abuse, and continued rejections.

I grieved for the fact that there were losses here. With my biological mom and the fact that I have had to face that there are simply limitations that will never be fixed.

Is this negative? Gosh, I hope not. This is real.

Do I feel less than?
Do I feel a defeat?

NO!! I feel absolute accomplishment.
I feel pride.

I have made it in spite of.
I have surpassed all expectations and I’m not done yet.

Knowing what I have accomplished with this brain makes me even more proud.

Sometimes, I smile just because I say exactly what I want to verbally…lol. Often times, what comes out is just not how I had planned it.

Sometimes, I am complete joyful because I made a meal for my daughter and EB and it was amazing.

The small everyday things makes me know I’m making it. I’m functioning like everybody else. I can do this!

Oh, the big things? Getting my masters degree when they said I wouldn’t graduate high school? Driving when they told me I never could because of my eyes.
Hitting home runs when they told me I would never hit a ball.
Becoming an award winning journalist when they said I would not be able to communicate well.
Being a great mom when I had so much against me just as an individual, let alone take care of another.

I’m proud!
The determination I feel when I wake up in the morning to beat the crap out of the day a head of me is what drives me.

The exhaustion I feel even sometimes mid-day lets me know that I am fighting one hell of a fight.

No, I’m not ever going to let any disability beat me.

Realities can hurt. They are painful.

BUT…

They didn’t see me coming…

I told myself I was going to be the BEST ANN I could be.
I told myself that I was going to LIVE.
FASD or not…I’m going to BE.

FASD acronym

Who are we? What are we? Let’s break it down letter by letter.
FETAL ALCOHOL SYNDROME DISORDER stands for…


Feels deeply, forthright, fabulous, fun-loving
Excited about life
Talented
Achiever
Loving, LIVING

Able
Loveable
Courageous, creative, curious
Ornery
Hopeful, happy, hilarious, honorable
Ambitious
Likable

Sensitive
Youthful
Nice
Dedicated,
Resilient
Original
Motivated
Energetic

Determined
Imaginative
Sincere
Optimistic
Remarkable
Dynamic
Enthusiastic
Rich