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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

New routines

I have been hearing a lot about FASD kids going back to school and adjusting. I just read a post on an FASD teen going off to school and the major adjustments she is having to make cuz of all the change. She wrote,…

I know for me, whenever I experience an extreme change; I get uneasy and it will take me a couple weeks to adjust to a new routine. In overload mode, I crash and hard. Its the overload of new people, new expectations etc.

I just started a new job. As an adult with FASD, I can say the feelings of overload are just as much there now as they were as a kid. I don’t think the feelings and overload are any different. The only difference is how I deal with it differently. this week was one of my hardest weeks in a very long time. My routine was different. Everyone around me during the day was new. People I dont know at all and I don’t trust. Even if they told me they are really amazing people and I should trust them, it will take some time. Being FASD, you need people around you who you can look to as external brains. I constantly rely on others around me. I look to them to tell me what I need to do. I judge their actions and facial expressions to let me know if something is unsafe or ok. I have the inability to judge understand a lot around me. It is crucial that I trust the people in the room who are guiding me for that moment.

Change is a scary thing. Change alone can make stress go up so much for us that we can fight overload immediately. I spent the week in a new job and then spent the weekend totally consumed in busy. My skin has been hurting so much the last day, I could cry. I start work again tomorrow and it will be completely busy all week again. I know that my down time needs to be absolutely priority for this next week or I will hit a wall.
Today I was out and I was talking with someone and I did just that. My entire body had like this what I call short circuit in the brain. It is literally from too much overload on my body. My mouth just stopped and my entire being just stopped for a few moments. it was so hard for me to come out of it. Normally, I would just go off and recover from that, but I couldnt. I took about 20 minutes before I said anything to the people I was with and then I gradually came out of it. When that happens, I know that I have pushed it beyond my limit.
Staying quiet and being completely focused on what I need to do to not take overload into a meltdown is crucial for the next week. Fortunately, I love the new job. I am currently organizing the office and for me, organizing is a calm.
New environments. New people. New assignments. Trying to understand the new around us. Trying to figure out what we are supposed to do next or even first. Trying to figure out how to execute in a new place outside of our routine…All very very tough. 
For those caregivers, I feel for you. Patience is the best gift you could give all of us. Let your FASD person do what they need to in order to calm. Anything repetition that works for them would be good. Someone told me today that a person they new who had autism just would comb and comb her hair and it was calming for them. I know for me sometimes it is writing or a bath. Also, leave more room for error. Frustration is already up and when that happens, there is more chance for misunderstanding cues and knowing what to do. As we settle and new routines become just a normal routine…we will be good…But it takes time.

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

Model school for kids with FASD

Wanted to share this information. The United States is so far behind Winnipeg in educating FASD kids. I will provide a video link about this school as well. Pretending FASD does not exist does not help anyone. It does. We need to add it to IEP’s and get kids the help they need. 
Winnipeg division has model programs

Elsewhere, there’s a patchwork — or nothing

Maddy Sinclair works in a rocking chair in the Bridges program at David Livingstone School, which is primarily aimed at children with FASD.

Maddy Sinclair works in a rocking chair in the Bridges program at David Livingstone School, which is primarily aimed at children with FASD.(WAYNE.GLOWACKI@FREEPRESS.MB.CA)

Alex Everett works one-on-one with education assistant Sylvia Armenti in the Bridges program at David Livingstone School, which is primarily aimed at children with FASD.

Alex Everett works one-on-one witheducation assistant Sylvia Armenti in the Bridges program at David Livingstone School, which is primarily aimed at children with FASD. (WAYNE.GLOWACKI@FREEPRESS.MB.CA )

Storm Whiteway responds in class in the Bridges program at David Livingstone School, which is primarily aimed at children with FASD.

Storm Whiteway responds in class in the Bridges program at David Livingstone School, which is primarily aimed at children with FASD. (WAYNE.GLOWACKI@FREEPRESS.MB.CA )
If you’re a kid with FASD, you better hope you live in the Winnipeg School Division.
Its programs and classes are a model for teachers across the country, the province and the rest of the division.
It’s the only school board in Manitoba that has special classrooms for kids diagnosed with FASD. The Right program at Shaughnessy Park School and the Bridges program at David Livingstone offer classes designed for kids with FASD who aren’t able to learn in a traditional classroom.
“The ultimate goal is for kids to be integrated into regular classrooms,” said David Livingstone principal Debbie Lenhardt Mair.
In the fall, the school division extended the Bridges program to junior high and Grade 9 students at R.B. Russell School.
It also created a new position for one of the program’s pioneers to help all 77 schools come up with learning plans for students with FASD (Students don’t need a formal FASD diagnosis.)
“It’s getting busier and busier,” said Deb Thordarson, who is still based at David Livingstone School. “The strategies we use are good for all kids.”
Outside the Winnipeg School Division, there are many children with undiagnosed FASD who could benefit from the teaching tools and methods they’ve developed, she said.
“I’d like to see Bridges and the Right program in every school,” Thordarson said.
But elsewhere in the province, services for kids with FASD are a patchwork.
None of the other 38 school districts in Manitoba has anything like a David Livingstone School. Several school divisions contacted by the Free Press didn’t know how many kids in their regions were diagnosed with FASD or suspected to have it.
For overworked teachers, kids with FASD are seen as disruptive, willfully lazy and slow. Parents say it can be tricky convincing schools to make adaptations for kids with FASD. Adaptations, a catch-word in the FASD world, could mean anything from allowing a student to use a calculator to modifying assignments, to avoiding group work.
“The hardest time for our kids is middle school and high school,” said Val Surbey, who has adopted and fostered several kids with FASD.
“Very few finish school, many drop out at the middle-school level or aren’t able to progress beyond that level,” she said. Her youngest in the Seven Oaks School Division ended up switching schools because his school wasn’t willing or able to work with him, she said.
People in education are often uneducated on what fetal alcohol spectrum disorder is, Surbey said. “It’s organic brain damage.”
The dad of a teenaged son with FASD once brought in an FASD expert to speak to teachers in his son’s school and the turnout was terrible.
And parents say getting funding for the most basic form of aid, a teaching assistant, can involve endless wrangling between the school division, education and child-welfare departments.
Steinbach mom Jennifer Friesen ruled out the public school system for her adopted daughter because she’d likely get lost in the shuffle in schools already bursting at the seams.
“It just seems to be really hard to crack into the education system,” said Friesen.
“How do you revamp a whole system? If I think the school system needs to be way more FASD-focused, how do you make that happen when each individual kid is so different?”
Educators say they’ve made huge strides in dealing with all kinds of learning disabilities, including FASD.
“It doesn’t matter to us what package the child arrives in,” said Judy Dandridge, the student services co-ordinator at Fort La Bosse school division in Virden. “The label doesn’t always define what we do.”
There are resources that teachers and parents outside the Winnipeg School Division can access, said Thordarson in Winnipeg.
Helping students with FASD develop the tools they need to learn and cope is an investment that will benefit them for a lifetime. “This is a lifelong disability,” said Thordarson. “They won’t grow out of it. We’ve all got to be advocates for these kids.”
Republished from the Winnipeg Free Press print edition February 26, 2011 H3

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.