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Archive for July, 2012

Square peg

This fits for those of us who are FASD. So many times society wants us to fit into society the way they fit. FASD people are absolutely that different peg. We come in all shapes and sizes and we don’t fit into society’s norm. I know personally employers, friends, and even family will try to shape us to fit into what makes sense to them and we are simply wired differently and it ain’t happenin…lol…
The best gift anyone can give any of us with FASD is meet us where we are, love us right where we live. We all need to change and be shaped in life. Nothing wrong with that, but do it with us and accept our disabilities and allow us to function within those parameters.  Frustration is not our friend. When we feel like we need to be different than who we are or the people around us don’t understand us or that the harder we try, the more we disappoint you, meltdowns will occur. 
If we know you will allow us to be who we are, that we don’t have to be pounded into a shape that fits for you, then frustration will be down and growth will be off the charts.
We want to please! If we know you are not pleased with us, then we are crushed. Our entire being wants to be accepted for the square peg that we are. Square, rectangular, triangular, many shaped forms of FASD..
The world is blessed with many different shapes and sizes of people. Our creativity and love for others is so deep …that could be lost if you try to conform us into the rest of society. FASD individuals have a lot of great gifts and talents!!  We are great contributors in society!!

FAS and abilities not disabilities

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 ( 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 . 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.

I refuse.

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.

So What!

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…

Ways that we are different…but AWESOME!..Pull up a blade of grass, sit down, and get to know me. .

Dear Teacher

Dear Teacher,
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.

Thank you,

Your student

Feeling lost

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.

Basics for teachers about FASD

FASD basics for teachers

Each child with FASD needs
  1. Unconditional care and support and the ability of the teacher to step back before judging (can’t vs won’t thinking).
  2. Realistic expectations and challenges a child can meet and grow from.
  3. Plan for success. Learn to predict the child’s reactions, organize the setting for success, work together and enjoy the rewards.
  4. Redirection and reduction of behavior when frustrated.
  5. Clear, concrete consequences that are understandable to the child.
  6. Adequate supervision, mentoring and coaching to lead a healthy life.

Get to know the child

  1. What are the child’s keen interests or talents?
  2. Does the child know something other children don’t? Let the child teach others.
  3. Does the irritating behavior demonstrate creative problem solving?
    • Salesmanship?
    • Leadership?
  4. Try to provide ten positive comments to every negative comment you give the child.
  5. If the child is having trouble learning or understanding something, take a deep silent breath and break the task into small segments.
    • Fold worksheet in half and have child do half or quarter of the sheet.
    • Give on part of the problem to work on.
  6. When they conquer the first step then go on to the next.
  7. Build on strengths.
  8. Don’t break down child with criticism.

Discover your students desires

  • Lighting
    • Low or bright light.
    • Window light.
    • No light.
    • Fluorescence or Incandescent.
  • Temperature
    • Open window.
    • Air conditioning.
    • Warm heat.
    • Cool room.
    • Warm room.
  • Seating
    • Near teacher.
    • Isolated.
    • Near door or window.
    • Study corral.
  • Work
    • Alone or with a friend

Reframe the way you think about the child.

  • Explosive can be dramatic, high-powered, stimulating.
  • Picky can be selective, discriminating, particular.
  • Stubborn can be determined, a willingness to persist in the face of strong difficulties, perseverance.
  • Demanding can be holding high standards.
  • Loud, noisy can be enthusiastic.
  • Inflexible, rigid can be established, rooted, traditional.
  • Wild can be energetic, lively, vigorous.

Do not use physical touch as first method of reaching out to the child.

Education Environmental Ideas

Adapted from work of Susan Doctor, PhD
Consider the amount of stimulation in the classroom and school when you develop an IEP to help the child. Parents can also use this list to help make life less stressful and chaotic in their homes. Think about those things and conditions you can or are willing to change.


Children with FASD do best in a classroom with a teacher who is able to maintain control, safety and structure. These children need lots of positive statements and a teacher who is a positive role model. The teacher who is willing to break tasks into very small learning steps and does not mind teaching things over and over without getting frustrated, will have an easier time working with a child with FASD.
  • Is the child in the right classroom?
  • Does the teacher know about FASD?
  • Does the teacher suit the child’s special needs?
    Willing to work at child’s developmental level rather than actual age?


Consider setting up a small private area or enclosed space for the child to retreat to when needing quiet study or time to regroup. A personal desk is often better than grouping or sharing which can cause major distractions. Placing the teacher’s desk and aide desk at opposite sides of the classroom (front and back) provides better supervision. Adjust table and chair – feet touch floor, table height just below child’s elbow with fist reading under chin.
  • Where do students with attention problems sit?
    • Away from pencil shapener?
    • Near the teacher or aide?
  • Do children work in groups?
  • Do the desks face each other?
  • Are there any desks that are by themselves in a protected area?

Rules and Structure

Rules need to be clear, concise and positive, few in number and posted in an easy to see place. Consequences must be immediate and easily enforced. Do not go on and on. A few word work better than a lecture. Children may resent “rules” so renaming them ‘school or classroom standards’ and ‘classroom responsibilities’ and with teacher’s ‘personal expectations’ may help.
  • Are the areas within the classroom clearly defined?
  • Does furniture provide boundaries to separate work/play areas?
  • Are areas/materials labeled with pictures at the eye level of children?
  • Is a daily schedule visible in my room?
  • Are classroom rules posted?
    • Are they stated positively?
    • Do students know the consequences for breaking them?
  • IS there a safe secluded area where children are free to go to work, think, calm down, etc.
  • Do students have a way to store belongings neatly and organized?
  • Are materials safe and well maintained?
  • If time out is used, where does the student go?
  • Are there several people (other teachers, aides, the secretary, custodian) who will provide respite when a child is having a ‘bad day’?
  • Does the child have to sit idly for long periods of time when being disciplined?


  • Do I get the child’s attention before giving instructions. If I am not sure the child understands do I have the child explain it to me.
    • Keep instructions clear and simple.
    • If possible get eye contact with child, but do not force it.
  • Do I avoid putting an instruction into the form of a question “would you…? or “could you…?”
  • Allow for shorter work periods.
    • Break assignments into smaller pieces.
    • Keep materials to a minimum and distribute them as needed.
  • Use a “back and forth” book to keep parents informed of problems, homework, good behavior and to keep you informed of home issues and medications and change in child’s life.
  • Give child opportunity to move around – hand out papers, run errands, clean board.
  • Do I use hand signals for simple instructions:
    • Raise hand for “stop”?
    • Point to eye “look”?
    • Point to ear “listen”?
    • Secret hand signal for the child who blurts out answers?


Consider placing the child away from traffic areas.

  • Where are the major traffic areas in the classroom?
  • Do children sit near one of these areas? (pencil sharpener, sink, teacher’s desk, etc)?
  • Are traffic areas clearly defined?
  • Do people walk in and out of the classroom throughout the day?


Due to visual processing problems children may react poorly to fluorescent lights. Full spectrum or incandescent lighting may help in some cases.
What kind of lighting is in the class room?
  • Do the lights cause a glare?
  • Do they hum?
  • Do they flicker?
  • Are there red lights?
  • Are they clear, yellow or blue?


Due to visual, balance and motor issues children may need adaptations:
  • Graph paper to organize math.
  • Pencil grippers to help hold pencil.
  • Ruled with dotted lined paper.
  • Reminders to use non-dominant hand to hold paper.
Before beginning a writing assignment it may be helpful to have the child clench and unclench fists, push hands down hard on desk, push palms together, rub hands together or clap. White board or certain types of paper may be glaring to child.
What type of writing paper and book paper do you use?
  • Newsprint.
  • Glossy.
  • Color – bright or pastel.
  • Odor of copier ink.
  • Paper brightness (bright white compared to regular white)

School Cleaning Chemicals

  • Are they toxic smelling?
  • Do they have a heavy perfume smell?


Change is difficult for children with FASD. They may need more time to adjust to a new school session, school day or class. A child with FASD may function well sometimes and poorly at other times. A wise teacher watches out for a child who is getting stressed to prevent outbursts.
Prevention is better than intervention. Consider allowing students to “earn” tickets for good behavior at recess, lunch, on field trips on in hall passing. At the end of the week draw for a prize. The person with the most tickets has the most opportunities to win a prize.


  • What are the procedures for going to lunch?
    Does the child have to stand in line for a long time before getting food?
  • How do they return to the classroom after lunch?
  • What are the conditions of the lunch room?
    • How many children are in the lunch room?
    • Is “kid music” playing?
  • Is there a “no talk” rule?
  • Is there a time limit for eating?

School calendar

  • How long is the school day?
    Does the child have a longer-than-usual day four days a week and a shorter-than-usual day one day per week?
  • Is the school year-round?
    If so, how long does the child have to adjust to a new session?


  • Does the child have to ride a school bus for a long period of time to get to school?
    • Is the bus crowded?
    • Noisy?
    • Is discipline maintained?
    • Does the child have a seat belt if behavior indicates one is needed?

Moving from class to class

  • Does the child get sent from one adult to another several times a day?
  • Do children have to go from room to room often during the day?
  • What are the conditions when the child has to pass in the halls?
    • Are there many other children present?
    • Is there a time limit?
    • Does the child clearly know the way?
    • Is the child supervised?
    • Is the child expected to move through the halls alone? With classmates?


  • How do children get ready to go to recess?
  • How do they come back to the classroom from recess?
  • Is the playground well supervised?
  • Does the child play alone most of the time? With younger children? Not play?

Field Trips

  • How many assemblies, field trips, and special events interrupt the daily schedule?
  • How are field trips handled?
    Is adequate supervision provided for the child?

Classroom stimulation

The simpler a classroom is the less distractions for a child with FASD. Teachers who work with these special needs students have discovered that cleared counters, soft colors, shut or curtained cupboards and organized supplies help a child stay on task. A small pup tent or reading alcove surrounded by pillows allows a child space to retreat and regroup. Surrounding a child’s work area with a cardboard study corral will also limit distractions.

Decorations/displays are

  • On the walls?
  • Hanging from the ceilings?
  • On the closets or cupboards?
  • Is the bulletin board decorated with brightly colored figures?


  • Are they covered by material with a “busy” design or plain material of a soft color?
  • Is there a storage area away from the classroom to remove equipment and reduce stimuli?

Walls, desks, shelves, cupboards

  • Is the color bright?
  • Is the color soothing?
  • Are there many colors?


Due to auditory processing problems a child may not be able to shut out noises we hardly notice.

  • What is the noise level in the room?<
    • Is there continual background noise?
    • Is quiet talking allowed?
    • Is music played during the day? What kind of music?
  • Is there something causing a disturbing noise in the room? (heater, pipes, slamming door, screeching desk bottoms)?
  • Is the classroom near a room that is noisy or chaotic, (shop, band, PE, lunch room)?
  • Are there many interruptions during the day?
  • Is the intercom used continually throughout the day?

Note taking and copy work

Due to visual processing issues, the child may not be able to be able to refocus between close desk work and chalkboard. Note taking involves using your ears, eyes, and hands all at the same time, children with FASD may not be developmentally ready to do this.
Child may have peripheral vision problems and so must move head to see as may not see things until it is in the center of vision. Child may be unaware of the environment or surroundings because they don’t see it. Child’s behavior may change in afternoon. Peripheral vision may be worse as the child fatigues
This was entire thing was taken from toolbox parenting at Click on the link if you would like to learn more about them and what they do. I found this awesome that they did this! Had to put it. but to make it clear. I did not do one word of this. it was completely from them to give them full credit. Thanks! and Kudos to them for doing this. 

Concrete vs. abstract

R.J. Formanek a friend of mine with FASD. Brilliantly written. Had to post! 
When talking with people with FASD please remember how WE see things; Broad generalizations DO NOT work with many of us. It may seem no big thing to you, but in our “concrete world” we see it as dishonest, or lying.

Let me explain. Someone says “Everyone is doing this.” OK, so I look around and see a number of people NOT doing what “EVERYONE” supposedly is. In my mind the statement then becomes… untrustworthy. I can SEE that not everyone is doing this or that, but I hear something that makes no sense.

Some people consider this as obstinate, or willful action on our part, but trust me in this, we get so confused that sometimes we just “guess” at what you really want. My brain gets so full of questions and warnings that something is not true that I just can’t concentrate on what is actually being said. It’s almost like a car alarm in my brain… and it makes understanding anything after that EXTREMELY difficult. Car alarm in my brain? hmmmm, I kinda like that one!

So, if you really really REALLY want to be helpful to a person living with FASD please understand this is “one of those things” that many of us have a very difficult time with. Saying All, or EVERYONE, or NO ONE can easily send me into a panic mode. I know life is full of abstract concepts, but we’ve already dealt with Santa is not real, nor is the Easter Bunny, Superman, or any of those people, actors play characters, advertisers lie about products and any long list of things that confuse the hell out of many of us. And we learn at a very early age that the world lies to us. Imagine living in a place and time where the very rules of society are often based on lies. No wonder many of us get angry and confused… and kids often have no way of expressing this lost of trust. I’ve heard it said that when dealing with FASD people and rules… if you make a single exception to that rule… well that NOW becomes the new rule. Think about that. THAT is concrete thinking. The exception becomes the rule. Don’t forget, we live in “survival mode” 24/7… we need to.

I have the same problem with driving… there are rules of the road (concrete) and then there is how people ACTUALLY drive (abstract) and you put the two together and I’m ready for a meltdown! I know the rules and I follow them… and I know when the people around me aren’t following those very same rules and my mind goes into some sort of … primary mode. Survival. I feel very under assault and react accordingly. I need to be very careful about when I get behind the wheel, just to keep my own blood pressure to a normal level

These are just a couple examples of abstract concepts in daily life, and how simple everyday type things can set some of us off. I know I have a list!
Thank you for reading this, I’m hoping it makes some sense to some of you!

Being an FASD mom with an NT daughter

“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.

It’s hard being FASD. It’s hard not understanding what people say. Its hard being FASD, but being expected to act as if we are an NT. It’s so difficult to live in a neurotypical world. Where even if people know your disability, they want you to act like them. Anger and frustration only makes our disabilities 10x worse.
If my daughter was not there today, I absolutely would have left that store with zero items on the list. I forgot one thing after another and she just said, “It’s okay mom, its right here.”  She didnt get angry. She didnt get frustrated. She could have…lol. She’s 16. We had been there a long time!!! We had to go back because I forgot something. “It’s okay, mom.”
I am so sensitive. If someone is upset at me, I literally go to tears and shut down ever more. I try so hard to understand and do what is expected of me, but so many times, the harder I try, the more I get it wrong. 
I had complete brain shutdown today. The harder I tried, the more my brain would not process. I’m thankful that she kept calm and just did it with me and the job got done! 
I’m thankful, but yet a little down about it at the same time.. I care! I want to be my best for myself and for the people I’m with. When I walk into a store, I want to be able to walk right up grab the things on the list and not have to rely on others to help me. It is what it is. That is my motto about those things. It is soemthing I cannot change. So, I have to go with it. 
I can do one item at a time. When I’m with another person, I can do one item at a time. Lots of times I have to have instruction. Lots of times I have to be told more than once. Lots of times, I only hear blah blah blah when they tell me and I really dont have a clue what they said. If they dont look at me when they talk, I dont here it at all. 
I was thankful for my daughter today who stepped up and said, “Ill help you mom.” Nice job daughter of mine!