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365714 tn?1292199108

Hi there I'm new to the forum

I found this forum because I was researching Buropion (welbutrin) side effects to see if it is causing my abdominal pain. My psychiatrist...let's just say I couldn't describe my autism well to her because I was too busy wondering how the heck she got her degree without appearing to know a thing about autism... She gave me the classic “404” look when I told her about PDD. That I can forgive. I said aspersers…still a 404 look. Autism…she looked like a deer frozen in front of the headlights of a car.

I came across one forum which I found fascinating. I love doing research to improve the characters that I write for my stories. I thought I'll click the main link to all the forums, which lead me here. I've been looking for a good autism forum to join.

I used to live in Wisconsin, but had to leave because I could not get health care and was going nowhere with trying to get SSI. (Funny that state prides them self with having some of the best health care in the nation...) With my dad's help I moved to Minnesota where, I've not only got health care, but I got dental health care as well as some spending money from the EBT program.

I'm trying to get SSI and will have my final hearing in January. I'm hoping for good results. Right now I have a hard time leaving the house because I don't know what to do with situations. I thought of it as anxiety, but it could the autism. I currently live with my grandma who has been very helpful and as supportive as she can be.

I'm trying to be an advocate for autistic people and help in what way I can. My dad is excellent at helping others too. He had to become an expert after having me.
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365714 tn?1292199108
I did something like that once to my glasses before. Uh, that wasn't fun, but I did manage to bend them back so they'd be wearable.
Thanks. We're having kind of a quiet Christmas. I'm hoping to buy stuff later when the chaos wanes...
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325405 tn?1262290178
Sorry about your name misspelled.  I should wear my glasses more often, but I need to get them fixed because I accidently sat on them.  

Merry Christmas, by the way, if you celebrate it.  :)  If not, um, happy new year coming up!
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365714 tn?1292199108
You're welcome. I'm glad to be helpful in whatever way I can.  We went to the Indiana confrence at least once. I believe it was called MAAP?  I was having fun drawing and selling some of my artwork for a fairly cheap price at the time. I also like visiting new states. Somwhere I have a map where I color each state I've touched my foot on. (going out and getting gas counts in this system.)

fyi, I have an "I" in my username after the "J".  It's sort of hard to see. No big deal. I just thought I'd make mention of it for my parents.

For some reason I almost always seem to pick long usernames...
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325405 tn?1262290178
Thank you all for all the info.  It is really helpful to hear what to stay on top of, and the fact that the school board and schools lie to you either out of ignorance or laziness.  It is scary to tell you stuff that isn't even legal.  You stayed on top of it, that's really great.  It's scary to think of the parents who didn't know any better to check the laws.  Now I know better to check the laws, so thank you for that.  Thanks also for mentioning rewarding the good people.  We love our daughter's 3 therapists, and it is nice having a good team, and they stop at age 3, and I know that over the years, she will go through many therapists, teachers, etc, on a year to year basis.  

It is also good to hear you say stuff about goign to Indiana to a conference.  I keep hearing that Indiana is a good place to live if you have a child with autism or on the spectrum.  We live in Indiana, hence I like anytime hearing Indiana mentioned either for diagnosing, conferences, clinics, etc, makes me happy.

Yes, letting go is hard.  My husband and I are in our early 30s. I don't think either side of our parents have let go.  :)  And I know my grandmother still hasn't completely let go of her son (my dad) and she's 96.  He still has to call her if he visits and then leaves to go home, to let her know that he got home okay even though he lives 10 minutes from her house.  My dad grumbles about how he's 70 and he's an adult and he does the same thing to me which I remind him about.  And we are all still works in progress, until the day we die.  

I am glad to see MJTheWriter and other autistic adults on this web site.  They are really helpful to us non-autistic adults (parents and grandparents) to understand our children, what to expect as they grow up, etc.  
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Avatar universal
Hi!  I am mjthewritermom.  It is good to see these kinds of forums.  When I was first learning to deal with Mjthewriter's "significant developmental delays" & odd behaviors, I experienced the frustration and confusion of having no where to turn initially.  I know that the time & energy spent from early on helped her to get as far as she has.  Mythewriterdad was very good at advocating and that was something that became a necessity.  I am happy to see her getting involved in this forum...it was a nice surprise.  We met Temple Grandin years ago and she became a "beacon" in the dark.  We gobbled up the books she wrote as well as others like Donna Williams, Sean Baron,etc.  We went to Indiana to the MAAP conference which is where I say I learned to begin accepting the fact that Mythewriter was and always will be on the autism spectrum.  The stories her dad & I can tell of her uniqueness in her perservance with bugs have forever touched our lives.  The characters she has been working on since 5th grade were before A Bug's life came into being.   She taught us to see life in a totally different way. I like to share how she would cut her characters like snowflakes when others in her class made the typical snowflakes.  When Grandma baked cookies with her, she made her "cookie bugs".  The teachers did not want to eat them as they were a work of art.

One of the hard parts has been letting go.  Since early 2007, Mjthewriter, has been living with her grandma in another state.  That has been quite an adjustment.  She wasn't getting any help with the medical system here and SSI, so we sought other ways to get her the help as a young adult.  When children are small, it seems like there is a lot of time to deal with things, but the years fly way too fast and then reality hits.  For an adult with these kinds of problems, the world doesn't see them as "cute", "little" anymore.
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367831 tn?1284258944
EEN : Exceptional Education Needs;

One other comment:  make sure your regular ed teracher and spec ed teachers (actually all teachers in a high school situation) have a copy of the IEP and have read it.   This is required by federal law.  They MUST have a copy of the IEP.  But more important:  the regular ed teachers need to also work on those IEP goals and classroom modifications.  IOW, it does not stop at special ed classroom.  It must be a systemic approach.  

This is something I went to arbitration to have done in her high school years.   Many teachers, one student, many goals (academic goals,no IEP goals). We settled on having an inservice done for all her teachers involved.  The district hired a consultant and the school psyc, who had been thru  the DPI statewide autism training were conducting this inservice.

As to homeschooling, make sure you have school resources available.  The school district has to help you out.

When you go to these  MTeam and IEP meetings, make sure all are there that are directly involved in you childs education.    One mistake we made was to have it top-heavy. That is a lot of admintistrators at IEP's setting goals where the regular ed/spec ed teachers can't relate to or out of touch with what your child needs.   Never accept a "canned"  IEP.   Beware when they say "this is our standard IEP for autism" or whatever.  Individual is IEP's first name.

I had one administrator (school district director of pupil services)  tell me on the phone about  her IEP. I needed more individual needs addreessed. He said "that's  the way we do it and if you don't like it call the DPI (state dept of public instruction)".    Guess who I called next?  Yep, the DPI.  He was fired and the district brought in a wonderfull lady who was more compassionate.  She wasn't very knowledgeable on autism, but she was a good listener.  

So you need a spec ed teacher, a regular ed teacher and an administrator who has the authority to commit funding for your chiild and of course, the parent and child.  When the child is a teen, you also need transition staff.  People from Voc Rehab or goodwill or agency like that.  I fought hard to  get Division of Voc rehab rep to be at her IEP.  They toold me it's not done untill kids are 18.   I said sorry but federal law rerquires you to be there at 14.  You need to get to know her and her needs NOW, not then.   I expect you guys to follow federal law, you can loose federal funds and be up for review and lawsuits yada yada yada.   Finally, they were at the IEP.  As a parent you gotta be a (rhymes with) brass-pole sometimes to get stuff done.

Also when things go right, reward tthe staff.   I nominated MJIthewriter's regular ed jr hi art teacher for our state autism society's  teacher of the year award.  She won the award.  This was the high point of her 30 year careeer.  The school board made a big show of it and posted the article on tha admin offices for years.

I could write a book, but I'd feel like Brittney and Jamie Lynn Spears’s  mom.  MJthewriter is a work in progress.
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325405 tn?1262290178
I understand the depression and anxiety that comes along with things.  I have mild depression along with my joint pain and other health issues.  I don't know, I guess you figure you can't function like normal people do, it takes a toll on your brain.  I can no longer hold a full time job with my health.  And with a daughter, I can no longer even hold a part time job if I want to be a good parent.  I have debilitating fatigue with my pain, so some days, I do need a lot of help.  Thankfully my husband makes enough money I don't have to work.  Applying for social security disability is incredibly difficult (I don't know if you are trying to do that or not), and I think I would have to work again to prove that I can't work (from what I've heard from others with lupus and fibromyalgia), as stupid as that sounds.  And I don't want to go back to work being a mom with health issues.  So I chose to a be a good mom and stopped working entirely.  It's hard when people don't understand why you can't do certain things.  I can handle social situations (I actually like to be social), but I don't have the energy for social situations (I'm wiped the day after and with a daughter I can't afford to be wiped out).  I know lupus is not in any way related to autism, but when certain things affect how you handle things in life and impact greatly what you can and can't do, certain things can be similar.  It is also hard to ask for help.  It's hard to explain to friends sometimes that you just try to pass it off as long as you can without them figuring out anything's different and then they think you're just weird and need to get over it like you can help it.  My husband's mom moved nearby after I gave birth because I just can't do it alone.  Well, my husband is here, but he works during the day, so that leaves me alone in the day, and on days when I can't do it, she will come over for a visit to help out or I'll go visit her.  She is agoraphobic (she has to take anxiety meds and antidepressants which help her) and has problems shopping in stores with big ceilings and at the worst bouts of it, she can not leave her house at all.  She also suffers from depression and she hears stuff from other people that tell her to just get over it.  Agoraphobia is not something you just to get over.  And now with my daughter needing extra help to get her to talk and with therapy, I am very grateful for the extra help and a relative nearby and she is grateful to have help nearby if she's suffering from a period of agoraphobia.  She also understands my daughter's sensory issues and knows it's not something my daughter can just get over and it will take therapy.  I have heard a lot of stuff from friends about my daughter.  Like she's just misbehaving, she needs to get over it, it's not that she can't understand you she just doesn't want to.  Which they do not understand the situation at all.  There are some friends who I stopped talking to because they just won't listen and don't care to hear an explanation.  My daughter is not bad.  She does not misbehave.  Well, no more than the usual 2 year old.  Actually a lot less than the  normal 2 year old.  She is quite loving and caring and good.  Well, at least my mother in law is a retired school teacher, so she is exactly the person who can  help with my daughter teaching her how to talk and to better interact and help me learn how to teach my daughter.  

Well, anyways, thought sharing our stories, might help you know you are not alone out there, suffering with depression.  I really hope my daughter does not go through depression when she gets older.  But, well, if she does, there are wonderful medicines out there.  I hope your medicine works out.  Usually I find the weight gain stabilizes after a month or so.  I keep track of my weight when I try out new meds and keep in touch with my doctor if I don't like the side affects.  Sometimes it's a matter of getting the right dosage too.

You Dad sounds like a great guy.  It's nice to have family.  

Sorry if my emails are long and rambly.  I am not so good at writing.  I'm more of a math person.
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365714 tn?1292199108
I just started on the Welbutrin and trying to note the side effects.  I also get a bit of depression and anxiety along with my autism. Remeron was the one they had me on earlier and that was causing the weight gain. (I felt better, but the gain sucked, so she reduced it to half a dose and it still wasn't changing much.)

I feel overall more cheery with Welbutrin, though it is too soon to say. I felt better with Remeron if it weren't for the weight gain. What I don't like is bouts of depression I get, where I cry and can't stop.

I've noticed since taking Welbutrin, I'm feeling like there is cotton chronically stuck in my mouth. I drink more water, but it goes through me. I'm also trying to figure out if it makes my hands a little shaky or not. (This problem is not as bad while I am typing but when I'm drawing or tracing over my pencil sketches with a marker, then I like a steady hand.) I'm also more awake at night and morning which may mean less sleep. I'll give Welbutrin a fair chance and in a month or two if it doesn't fit, then I guess it's like you'd do in a clothing department; go off and try the next style or size.

Thanks about the writing. For me, I live with my characters in my head 24/7 seeing them and their actions like a movie in my head. I recall scenes like one would recall memories. I may as well put it to use, right? ;)  I've always had characters since I was five years old. I think my characters help me understand the world around me as well as providing entertainment. I may have trouble knowing what other people feel and reacting appropriately, but I can do those things in my stories. My guess is I must be using a different part of the brain when it comes to writing and drawing than feeling emotions.
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325405 tn?1262290178
Thank you for letting me know what you went through. It helps me know some what my daughter might go through and what I can look out for and try to stop it from happening in the first place.  I think teachers are better these days with dealing with educational issues.  I'm sorry you had to go through all that.  Most school systems are not great, and then when you throw a learning disability in, it becomes worse.  My sister went through a lot growing up, having some learning disabilities.  Really makes some parents think about homeschooling, but then with educational disabilities, parents may not be trained enough in how to teach their kids, so then you are stuck with the school system.  

It sounds like making sure you know how to get the right IEP is essential, and getting the right school and making sure if our children need an aide to help them, then that is also essential.  And staying on top of things in school.  Because, from my vague memories of growing up and school, I don't think I told my mom or dad much of anything going on.  So that means I will have to stay on top of my daughter's teachers in school.  Everything I said to my parents was just "today was fine," no matter how bad or good it was.  I'm sure my daughter will do the same thing.  My husband does it still when he comes home from work, so I guess we don't outgrow that as adults sometimes either.  

I am not sure what EEN issues are.  My daughter is only 2.  I know I have to start learning all this terminology in the next few years.  Her 3 therapists are starting to recommend to me that she should go to a developmental preschool at age 3, which is through the county school system.  These preschools help children with speech and language delays and also can help with sensory issues with therapists at the schools.  Depending on your child's needs and age, preschool can be anywhere from 1 to 5 days a week.  And even the preschools have an IEP to set up.  I found out at least that I'm in this township that has an excellent developmental preschool and is the top in the area, so at least we don't have to worry about whether or not to move to get a better school.  

Well, this is probably too much you don't want to know about.  But, wanted to thank you for sharing what you did.  I know there are a few other autistic adults or adults with Aspergers on the newsgroup (some with children themselves), and it is helpful to hear from adults.  It is exciting to read that you write stories.  I couldn't write a story to save my life.  

P.S.  You had mentioned Welbutrin and side effects.  I tried taking that awhile back but didn't like the side affects.  I went back on Prozac for a bit and am now off those types and on something else that's not an antidepressant since they werent' working for what the doctor was hoping they would work for.  Plus I also noticed worst side affect of antidepressant was weight gain, in my case.  That's enough to make you more depressed than you were before taking the medicine.  I don't know if you're using it as an antidepressant or for other symptoms from your autism.  I have lupus or fibromyalgia (docs keep waffling between the two for 15 years now and the symptoms have a lot of overlap between the two, mainly joint pain and chronic fatigue and occasionally some other organ or nerve or skin involvement) and have taken antidepressants occasionally for migraines and neurological problems I have.  Sometimes they work for awhile.  I think the best thing I was on was Elavil (generic Amitriptyline) which is a very old antidepressant, antipsychotic which has been shown to help other diseases and disorders and put your brain back in balance.  Plus, well, it helped with depression which is the primary reason for it.  When I was on that drug, I was able to sleep regularly (my sleep cycle was normal instead of not), I had no migraines, and I didn't zone out much.  Some doctors don't like to use it anymore because it can cause problems if you have other issues like bi-polar disorder, diabetes, skitzofrenia (however you spell it), and a bunch of other if you have something don't take this drug.  I can't find a doctor who will put me back on it even though it did help me immensely.  Maybe it had too many side affects on people they are afraid of it.  Or maybe there's something wrong with  me the doctors aren't telling me.  :)  Or maybe it doesn't go well with the other meds I'm on for my pain issues.



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367831 tn?1284258944
well, as u may have guessed, I'm her dad.  

Some states and school districts she grew up were better than others.   It's a ****-shoot where-ever you go.  Maybe the kids are mean and the administration creates the atmosphere unknowingly; maybe the administration is clueless on EEN issues; maybe the teachers are clueless or "retired on the job" or maybe you get a good chemestry mix of all the good stuff and it works out.

Whatever happens, PARENTS:  you gotta be in the forefront of what happens.  I can't stress that enough.  Remember the story  about the tribal village who had one of their children kidnapped and the village  council met and discussed what to do.  In the meantime the mom came back bruised and bloody but with the child in her arms.  The council asked how she did it, mom replied:  "he's not your child, he's mine"
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365714 tn?1292199108
I'm not sure if I got all of your questions, but you can also pm me to get my dad's email address. He can be a good resource. I'll see if I can ask him to join the forum.  He helps fill in the gaps of things I may not have understood back then.

For me elementary school was the worst. First grade was fine, though I was not behaving very well as far as the teacher was concerned. I did my own things regardless of what I was supposed to do. I think the teacher pretty much gave up. She didn't try to interfere. I think she just went on with the class without me. I may have been taken to the principal's office a few times. Often I was distracted, would be drawing or running off to the windows to catch flies or any bug I spotted. My parents took me to another school which was nice. They had people with disabilities intergraded in normal classrooms. The students were very forgiving and friendly. The school also had aids that would assist students. I had a helpful one that would give me crayons and other things on occasion. The downside though was they still didn't quite understand my autism. They tried to eliminate insects from my life. They kept me out of class when they were studying about them and they tried to get my parents to remove them. That didn't work at all. Now because of me, they've learned their lesson and I think are trying to work better with future students.

The mistake happened when the school board thought I didn't need to be in their school. They thought I was ED challenged (emotional disorder) rather than a learning disorder.  They worked with my parents to be brought back into the school I was in before. It surprised me that the students who seemed to be fairly tolerant of my behavior in 1st grade (before I got moved to the other school), were not when I went into second grade. They did not forget my behavior and harassed me even though I may have forgotten them. Their special Ed program was set more for a point system rewarding good behavior and punishing bad behavior. As a result I got a detention I still don't believe I deserved, simply because I had trouble understanding the teachers' verbal directions.  I think subject wise gym and music were my most challenging subjects. Music because I didn't participate. (I have trouble reading music and keeping pace with the rest of the group. Even now in church, I rather quietly listen than try to read and sing.)

Gym was difficult because I'd have to listen to directions and often I'd only remember one step at a time. The detention I got was hinged upon, this class. The teacher said put your jump rope away. I did as told, only she meant later, not right at the moment. She told me I got a detention since I filled every letter of my name. Me, I was thinking "huh?" I didn't get what the cause was.

I got saved from that school when we moved. I spent 5th and 6th grade in another school, still got picked on, but not as severe. I had a hard time doing homework outside of the classroom. Once I got home, I wasn't going to do it. I'd do it as long as I was in the school building.

By middle school, things suddenly improved. The IEP and my parents got me an aid to help lead me to the classrooms. It was helpful having someone to walk with me when I'm walking through a massive crowd of people looking like they are walking straight at me. The teachers seemed to be very kind and I surprisingly did very well. Very few people picked on me, but I didn't have any friends either.
For the most part, high school was pretty much the same. With high school I had a choice between two schools because of my location. I made sure to go with my parents to both schools, talk with their counselors, see what their special Ed program is like, etc. I picked the school that seemed to have the better program and I think that made a big difference.

I think with school, it really helped to know the teachers and for my parents to know them too. If I got along well with a teacher, I could do well in the class. If I didn't get along with the teacher, then different story.
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Avatar universal
HI! +
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325405 tn?1262290178
Good luck with trying to get SSI.  Doing anything with the government seems to be worse than getting a wisdom tooth pulled at the dentist.  

You said you wanted to help understand our autistic children.  I am not sure if my daughter is autistic or not (we're waiting to go see a developmental pediatrician in March after the recommendation or her 3 therapists who think she is autistic or PDD).  She's only 2.  When did you/your parents find out you were autistic?  Did it shock them?  I don't think I will be shocked to find out why my daughter has such significant delays, and I know a lot of it has to do with sensory issues.  Both my husband and myself had sensory issues as children, and I still have some sensory issues to this day. So, our daughter having sensory issues, not a shock.  My husband was a late speaker, but he at least had receptive language by age 2.  His first words were all numbers.  Not being able to speak, it's a little frustrating since our daughter so badly wants to talk and understand us, and we are finding with sensory integration therapy, her receptive language is improving daily and she is actually starting to try to babble.  I know having a diagnosis of autism will mean more work for us as parents to teach her things, but we will be happy no matter what the outcome of the diagnosis.

Did you like school when you went to it or did it suck?  Well, school sucked when I was a kid, all through 12th grade, and I guess it sucks for most people.  I still have tramatic memories from being shoved in a locker in 6th grade and left there for a 45 minute class period screaming the whole time and no one heard.  Elementary and middle school were all horrible years, name calling and harrasment.  And I don't think I was different in any way, just a regular Jane Doe.  Maybe that was why I got shoved around.  I really cringe thinking of sending my own daughter to school, after what my husband and I and my sisters and brother and several of my friends all went through in school.  Makes you really think long and hard about home schooling, but with a possibly autistic child, I am not sure that is an option.

Well, hate to ask  you for more info... but well, do you have any advice for us parents as our children  get older?  What will they go through during school?  What things made you happy growing up?  What experiences in life have been good experiences so far?  And what things do you not like at all?  Anyways, you dont' have to answer if you don't want.  I'm not so good at asking questions and you may not having time.

Good luck on your stories!  


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365714 tn?1292199108
Alright. I'm hoping for more activity on this forum.

Anyways I'm here to try to help you understand your autistic child if you are a parent. Though I'm not a parent, I've lived with autism and struggled through it in the normal school system. I survived through being picked on (violently) by my peers for being different, and I've dealt with distractions, etc and managed to make my way through the public school system to get my high school diploma as well as take a couple years of study in an art college.

Thankfully there is more awareness on autism no than when I was a child.

I can probably relate to your child and help you see the world as they see it. It's a very frustrating world to get along with people who may not understand. I’d like to help in what way I can.
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