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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

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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.

Teacher

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?

Seating

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?

Instruction

  • 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?

Traffic

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?

Lighting

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?

Writing

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/Transition

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.

Lunch

  • 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?

Transportation

  • 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?

Recess

  • 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?

Shelves

  • 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?

Noise

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 http://www.toolboxparent.com/Default.aspx. 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!

How much further along would we be if people knew about FAS

I woke up thinking about yesterday. I’m still pretty steamed. What is it going to take for society to recognize the effects of fetal alcohol syndrome? Babies die from it so that won’t get anyone’s attention. Why is it okay for a mother to drink while pregnant still? Even after all that is known.

Do we need a law in effect that actually states that it is against the law for a woman to drink while pregnant? Should we legislate for that? Should we line up a bunch of people with FAS and say this is what happens when you drink while pregnant? Well, that won’t work because most of us have invisible disabilities.

Do we have to draw images with umbilical cords with a handle that has the word KEG on the top of it with the mom’s hand on it leading toward the baby?

What gets me more is the lack of knowledge in this society that it even exists. They say the numbers are up around 50 in 1000 kids have it and it is even higher than that because most mothers do not admit that they drank while pregnant. Stats today say that there are more people with FAS being diagnosed than people with autism.

How come I can go to a man in a Barnes and Noble who is supposed to be very knowledgable about books and topics and he look at me like he had never heard the words Fetal Alcohol Syndrome? This was a man at least in his 50’s. Are we really there?

See, to people who have it and to their EBs (external brains) or caregivers, this is something they live each and every day. We eat, sleep, and breathe FAS.

I am not asking for that. All I am asking for is for more awareness. A month just for FAS. Commercials. Billboards. Speakers. Inservices in schools on FAS. The Rainman and Temple Grandin of Autism. FAS needs that. We need advocates. We need legilators paying attention and passing laws on this. We need chapters all over the country. We need centers for FAS adults and children all over this country. We need all the helps we can get.

IEP’s are not built for kids with FAS so they get lost in the system or misdiagnosed to fit somewhere else. So, they are treated as if they are autistic but they are FAS. Yes, there are a lot of similarities, but it is like apples and oranges. Completely different diagnosis. Completely different brain.

When I was first told I had significant brain damage and that I would never graduate high school, it was 40 years ago. I was told that I had such significant retention and comprehension problems I would simply not make it. I was told that that the parts of the brain that controls the eyes were so damaged that I would never be able to drive. My eyes do not converge. My eyes have 0 depth perception. My sensory is off the charts. My ability to process like others is significantly stunted.

Oh, I’m smart, they said. Very high IQ in fact. but I would have no clue how to apply anything I knew.

Huh.

What do we do with that?

That was 40 years ago. How much further are we than that.
We did link it to alcohol.
A genetics person give me a 100% FAS diagnosis with the words that “alcohol significantly contributed to my disabilities.”

So where does that leave us today?

FAS people do not have the ability a lot of times to advocate for themselves, but that is what we have to do. We have to educate everyone around us including our own doctors because they simply are in the beginning stages of even knowing what FAS is.

I know FAS individuals who tell me that they have to take fliers to their doctors to explain to them what it is.

There is noone more determined to LIVE and to make it in this world than someone with FAS. They literally are the most determined people I know. They will make it no matter what. AND we will make it without the helps, but just how much further along would we be if we did?

Just how much further along would someone with FAS be if they had educators, doctors, huge centers of research and commercials, advertising, awareness months, ribbons, and moneys pouring into this cause. What if everyone knew about it and I would never have another person look at me again as if they had no clue what FAS was.

What if people knew about FAS as much as they know about autism?

What if we actually had a diagnosis in the DSM V?

What if?

Oh, we are going to make it on our own.
BUT, we will be so much further along if we have all that in place.
if we had the helps
if we had the ieps with the proper diagnosis on it so Fas kids got the right educational helps.

If they did, they might be able to be who they want to be when they grow up.
They might be able to get there faster.
They might be able to exert that energy they have to put in every day just for daily living and excel in a job and in life.

If people did it with us, not just our external brains or caregivers, but I mean society like they do autism and other DD’s…just imagine how far we could go.

Just imagine how much less of us there might be!

That would be a good problem.

Maybe a mom just might think twice before having a glass of wine while pregnant.

If we can save one baby from becoming FAS…it would be worth it.

Video blog by Ann on why we need to call FAS what it is. http://hopefasd.blogspot.com/p/video-call-it-what-itfas.html

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.