Archive for July, 2012
I’m ecstatic. I mean seriously happy!!
Those of us with FAS so many times hear how we can not make it in the world. There is nothing we want more but to be like our neurotypical friends.
I am here to share with you that even though I had every odd against me, I have made it! I have beaten every odd!
Eight years ago, I had written a book. A newspaper editor got a hold of it and she read it. She loved it so much that she contacted me and asked me if I had ever considered writing for a newspaper. I gave it a try. Eight years later, I won state journalism awards.
One of the articles I covered was about a school for autistics or a school for those that are not neurotypical. A teacher who decided to leave the school system and open her own school for kids who need sensory-friendly, teacher-sensitive environments.
She started a school by Canton Ohio called Idea House (http://www.ideahouseeducationalservices.com/.) The story I was able to write for them, generated such a positive rippling that Angi (founder of Idea House) remembered me.
I recently left the newspaper business. I have been trying to figure out how to make things work financially. I don’t have the most typical brain. Finding a job that will fit is a little difficult for me.
Idea house is getting ready for their school year. Angi and I were talking. Next thing I know, I go in for an interview and I have a job with them. I will be writing their newsletter, doing their website, photography, helping with the kids, and I will be organizing her office. It fits me so perfect! I could not be more excited!
On the way home from the interview, I get a call from Jeff Noble from http://fasdforever.com/ . and he asks me to be involved with a conference call coming up in September and we discussed possibilities of plugging me into more opportunities to help with FASD. I would do anything to advocate for this cause.
So, in one day, I got a job where I will be working at a school for kids with neurodisabilities, and I will have another opportunity to do a conference call to help caregivers whose loved ones have FASD.
I have FASD. This is a success!
When I was in kindergarten, I got the will not graduate high school diagnosis. Ann’s disabilities are too significant. Brain damage is permanent. Well I got a masters degree and with much determination, I can make these things happen! When I was on the phone with Jeff Noble, he said he wanted to share my success story and I told him, I know I screw up a lot. I know I have had my problems, but the thing is I don’t stay down.
I won’t stay down.
We might have a diagnosis with Fetal Alcohol Syndrome, but that does not mean we are not able to be successful and positive contributors to this society. Don’t let the negatives you hear, be your future. Write your own future. Do it, in spite of. Do it to prove them wrong. Do it because you are a person with hopes and dreams and aspirations. You are the author of your future.
Don’t let FAS be who you are–as a negative. Don’t deny it. Grasp on to it. Be proud and use it to make a difference in other’s lives and in your own.
And don’t let other’s negative thoughts and opinions of you, consume you…
Yea, we think differently…
Yea we are wired differently…
Yea we have sensory issues.
Yea we have meltdowns.
Yea we need time outs.
Yea we have processing problems.
Yea we don’t understand things like everyone else.
Yea, we have auditory, eyes, and speaking problems.
We might do things differently, but sometimes different is better.
Being wired differently allows for creativity and uniqueness.
We might have sensory issues, but we are so sensitive to all around us.
We have meltdowns, but we are trying to learn how to make them less frequent.
I might have no depth perception and my eyes don’t converge, but I see a tear before it falls.
We might not be like everyone, but we are not less than.
In fact, we are amazing and can be great contributors!
Yes we can…one of my first blogs about making it in spite of the odds…http://hopefasd.blogspot.com/2012/04/all-i-hear-is-blah-blah-blah-reposted.html
Ways that we are different…but AWESOME!..Pull up a blade of grass, sit down, and get to know me. .http://hopefasd.blogspot.com/2012/04/see-world-through-my-eyes.html
I have FASD. I have a hard time hearing everything you say. I try, but sometimes I just don’t understand. It’s hard for me to understand the directions you say. Lot’s of times I forget as soon as you say what I’m supposed to do. I look at others, not cuz I want to cheat, but cuz I want to know what I’m supposed to do next. I know it seems like I’m not paying attention, but I just don’t understand.
I’m not lazy. It seems like I dont want to do my work, but I do. I’m just not sure how to do it. If you tell me exactly what I’m supposed to do a couple of times, I might understand better. You might have to explain it to me with no one else around.
My senses are really sensitive. Sometimes I need breaks from the classroom. Sometimes, I need my own time out from the chaos in the room. It’s hard for me to process all that goes on.
FASD is fetal alcohol syndrome. It just means that my mom drank when I was in her belly. It doesnt mean I’m less than the other kids in the class. I am still very creative and very fun. I love to learn and I love to work. I will always give you my best. I promise and I keep my promises.
FASD means that my brain is not like the other kids. It is wired a little differently and I have to find my way of learning. I have to learn how to learn. Work with me cuz I’m trying to figure out what works for me. If you do it with me and stay patient with me I won’t get as frustrated. Let me know how proud you are of me that I’m working so hard even if I don’t understand and constantly focus on what I’m doing right. Oh, you can tell me what I’m doing wrong or what I’m not understanding, but remind me that I’m still a great kid even if I did something wrong.
See, I’m extra sensitive. My brain just has a hard time understanding so I get so confused with what you are saying or what you are expecting that the harder I try, sometimes my brain just shuts off. And if you get frustrated with me, I think I’m doing something wrong when I’m really trying to give you my best. Do you know what it feels like when people are upset with you and you don’t understand why? You are doing everything you think they want you to do but you are still doing it wrong?
I cry a lot inside. I want to be my best for you and for my parents. I want everyone to be proud of me.
It’s okay to make me an IEP. Call FAS what it is. It only hurts me if you don’t. If I get the right diagnosis, then I get the right helps.
It’s okay that I have this thing called FASD. I can’t change it. It is what it is. Just please don’t make me feel different. Don’t make me feel like what my mom did was so wrong that I feel bad about who I am. Don’t make her actions be who I am.
Last week was a dream come true to someone with FASD. I worked at a camp for kids with cancer. I was the photographer. I had a schedule mapped out for me. I had where I was supposed to be when. What exactly was expected of me. Routine. A focus cuz I knew exactly what I was supposed to do. I had purpose and I had everything laid out for me so I didnt even have to figure out what to do next. I knew.
This week I have none of that. I don’t have a schedule in front of me telling me what to do. I don’t even know where to start. I’m in between jobs I guess you could say and I can’t even figure out how to get where I’m going. Execution is not my strong suit. I know what I want in my mind but how to get there I have noooo idea.
That is the biggest problem with me. I will work 80 hours a week if I know what to do and if someone tells me exactly what to do and how to do it. I’m fine. I will do it all day and with all the focus in the world. But to be left on my own after a week of complete schedule and routine and focus–i have never been more lost. Well, I guess I have, but I am noticing it a lot more right now cuz of last week.
If we just had someone to put a schedule in front of us and say do this, we will be fine. I seriously would work the entire day if I just knew what to do and how to do it. I just can’t get my brain to figure out where to start and how to get from A to B.
And it makes us get afraid when that happens. So the fear makes us feel more lost and more confused so then we become majorly stuck.
I loved doing the photography all week. I wish that I could find a regular job where I could do photography shoots all the time and have a regular routine. I would work very hard at it. I have a gallery and it is doing amazing with the traffic and the feedback, but I’m not getting buyers.
It is so hard for people with FASD to make a living because we really do have disabilities and our brains are really wired differently, but we want so badly to be busy and be productive at the same time. When we don’t have that is when we start getting into trouble and start making the people around us annoyed with us.
If I just had a purpose and a focus and something to keep my busy I would be fine. I always have to be doing something. When I’m not I start getting weird.
I am trying to figure this out. When I’m like this it is even harder for me to explain myself in speech. My brain is more confused. So, the more I try to explain, the less sense I make so then I feel more alone than I did before trying to figure this out.
The worst place to be for someone with FASD is lost.
Structure. Routine. Someone to help us get from A to B. That is the key.
How do I start? What do I do? How do I get from what’s in my brain to action?
I seriously have no idea.
“Here mom, let me help.” Those were the words I heard from my 16-year-old today. I’m thankful for those who know when to help. Who know how to help and who know exactly how to allow me to be this FASD person but still feel okay at the same time!!!!! To be in a store, surrounded by items, with a list shuts down my brain. The harder I try, the more confused I get. Looking at items trying to match them up to the list for 15 minutes didnt help. “Here mom, let me help.” Calm. Patient. Loving. And most importantly, she did it in a way that I did not feel insignificant. She just stepped in and helped and didnt for a second make me feel that there was something wrong with me.