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Off Topic Stories of Autism

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  1. theyareoutthere

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    Posted 5 years ago
    Sun Mar 9 2014 22:40:50
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    The Atlantic has a story on Autism this month, I've copied a link to the anecdotal, and sad, stories from families writing about their experiences.

    http://www.theatlantic.com/health/archive/2014/03/what-its-like-on-the-autism-spectrum/284268/

    They
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    = TAOT
  2. Butterfly1972

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    Posted 5 years ago
    Mon Mar 10 2014 9:06:35
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    Thank you for sharing this article, TAOT. Autism Awareness has come so far in the past few years, but still has such a long way to go.

    The stories of autism are all different, as is the world of autism itself. The spectrum of autism is wide and ranges from the very mildest of cases to the most extreme severe cases. And like snowflakes, no two cases of autism are the same. Even in the more detailed diagnosis of Asperger’s Syndrome and PDD…no two are exactly the same…and very much a mystery. And, I thought I would share my story with all of you.

    I have the privilege of being the mom of a wonderful son with autism. He was diagnosed with autism just days before his 3rd birthday. Up until his diagnosis, we thought his delays were due to his being born prematurely…. But, after a round of tests just before he “graduated” from early intervention, I received a letter in the mail containing the results from one of his tests; which stated his delays were due to autism. I was stunned. No one had ever brought up autism in his 2 years of therapy….never. My only knowledge of autism was the movie, “Rainman”…..and that wasn’t how my son was at all. My son laughed, he smiled, he hugged...how could he have autism??? But, there is was… the word “autism” next to my son’s name. Our family’s world was forever changed with one simply trip to the mailbox.

    My son started attending a special school for children with special needs…..and I started attending a support group for parents of children with special needs. In that group, I found that most parents of special needs children go through a “grieving” process. Whether it happens with learning a child has Down’s Syndrome during an ultrasound, whether a disability is learned about at birth…..or whether a child is diagnosed later with autism….at some point a parent goes through denial, anger, frustration, numbness, and finally…..acceptance. I went through all those emotions and learned that it was normal and most parents went though the exact same emotions. I can look back and see exactly each set of emotions from beginning to end. I think the hardest time was the “why my child, why can’t he have a normal life like everyone else” phase. There is line that is drawn in the sand at the time of diagnosis…..one side is the hopes and dreams that every parent has with the “you’re pregnant” words from your doctor, and the other side is the new, altered set of hopes and dreams that comes with the “your child has……” words from your doctor.

    With my son having autism, I have discovered the world of children with special needs….and as he is getting older, the world of teenagers with special needs. And what a wonderful world it is indeed. I believe with all my heart that every single one of these children is a gift to all of us. They love, they care, they encourage, they share, they give support, and they give a hug and a smile with so much enthusiasm it just melts my heart and reminds me of the simple joys of life. And they do all those things out of a place of such innocence. It is truly beautiful to behold and to be a part of that world is wonderful.

    And as time passes, I realize I wouldn’t change a single thing about my son. He is a blessing and he brings a joy into my life that I never knew existed before. He lights this world with a very special kind of light that only he can give. And he has the most infectious laugh. If he is laughing, then so is everyone else around him. I have been given a very special gift from God……I get to be his Mom. And I am honored.

  3. theyareoutthere

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    Posted 5 years ago
    Mon Mar 10 2014 9:31:26
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    Thanks for sharing, Butterfly. It's the mixture of children and the unknown that saddens me. Like cochlear implants, we may be moving toward being able to correct or alleviate some of these challenges for these parents and children. But, many people we now know or thing are on the autism spectrum have made great contributions. I think all parents would do anything to make their child happier and to avoid sadness.

    Other than one family member who wasn't diagnosed and may be high functioning. We will never know, I haven't lived it. A friend of mine did live with a child on the extreme edge. He never Said I love you and his frustration lead to violent behavior. It isolated them. This was years ago and I've lost touch.
    Iremember watching the combination of love, helplessness and pain

  4. Butterfly1972

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    Posted 5 years ago
    Mon Mar 10 2014 10:41:51
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    I think all parents, whether their children have special needs or not, want to protect their children from sadness or disappointment. But, we can’t…..it’s life. The best we can do is to provide them with the necessary tools to deal with whatever life throws their way.

    The older my son gets, the more I understand that he just wants to be treated like every other kid/teenager. He wants to be accepted for who he is and to make his own decisions. That’s hard for me sometimes, but I know that I have to step back and let him make his choices. But, he knows that mom is always there to help him when he needs me.

    In my son’s group, there are multiple kids with autism (from the very mildest to one who is quite severe ~ non verbal, prone to outbursts), many with Down’s Syndrome, one with Muscular Dystrophy, one who is blind, one with Williams Syndrome, and one who was born without the protective layer of muscles to cover his stomach and intestines. They are all in the same group now, but all of us moms know they will all grow up to lead very different lives. Some will grow up to lead quite the “normal” lives (whatever “normal” really is); while others will either live in assisted living facilities, group homes, or an institutional setting. We talk about this from time to time. The unknown is hard, but we do the best we can to give them the solid foundation that they will need to live the best life possible.

    The biggest thing I have learned from all of these children is that they don’t want to be pitied, or felt sorry for…..they really just want to feel like every other kid/teenager. They are truly amazing. When one member of their group is sad or frustrated, they all step in to help in their own way. I’ll give you an example….by way of the teen with severe autism. This teen can’t express his words, doesn’t like physical contact, and no eye contact. But, if another member of the group is upset, this teen will go and sit beside/stand beside the upset member until he/she calms back down again. Doesn’t matter if the upset person moves about….the teen with severe autism will move, too, and keep staying right beside the upset person. It is his way of offering comfort……and it is very touching to watch.

    The girls in the group….totally into One Direction, makeup, and all things that glitter….lots of glitter….lol. Like, if they are all “glittered up” and it’s my turn to car pool….you can be sure my SUV looks like it has been fairy dusted by the end of the night. Again, they just want to be thought of as teenagers….not just kids with special needs.

    So, I guess my whole point is, that yes, there is an amount of worry about the future and the unknown, but, gosh, there is so much joy that can be found while on the journey as well.

    And, thank you again, TAOT, for starting this thread. The more we learn about autism, or any other special need, the more it leads to understanding and, most importantly, acceptance.

    And as far as autism goes, we can learn a lot from Albert Einstein and Temple Grandin. If you have never watched the movie about Temple Grandin's life....it is definitely worth the watch. She is a tremendous example of courage and determination for all of us, but especially for those whose lives are affected by autism.

  5. theyareoutthere

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    Posted 5 years ago
    Mon Mar 10 2014 11:12:12
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    Albert Einstein and Temple Grandin were two of the examples I was thinking of. Like kids with cancer, I sometimes feel "more" for the parents than the children. The kids at Make A Wish are usually upbeat and one-day-at-a-time. The parents, who think about the past and future, are worried. A lot of stress relief is based on staying in the moment the way the kids do. I was one time sitting in a radiation waiting room and there was a pre-teen and her mom waiting for what I assume was the pre-teen's treatment. The little girl was going to a concert that night and very excited. The mom sat listening and nodding and laughing. The minute the girl went in to treatment, the mother's face changed. She left and when she came back it was obvious she had been crying. I didn't say anything and was never sure if I should have. When the girl came back out, her mom was smiling and laughing again.

    I'll remember that about not pitying. I tend to be analytical, but sympathetic deep, deep inside. I didn't cry until after my friend died. I was the friend who was upbeat and positive. That was my role and I knew it. The high functioning man that I knew in grad school (he was history): he just wanted to have his world view understood to some extent. What he knew about the nuances of history!!! (not my graduate degree). He didn't want to teach, he wanted to research and research and research, and sometimes he would write.

  6. Daylight

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    Posted 5 years ago
    Mon Mar 10 2014 11:15:07
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    Thank you, TAOT, for the excellent link, and thank you, Butterfly, for your insightful and touching account.

    I read several of the stories on the link, and I must say that they were very interesting and inspiring. Having worked with children diagnosed with different levels of autism in middle and elementary schools, I have a special place in my heart for them. One wouldn't necessarily expect to see autism discussed on a bed bug site, but having bed bugs can change how you look at the world and respond to it--kind of like those with autism have a different interpretation and reaction. In essence, I guess I am saying, we who have gone through a traumatic episode with bed bugs appreciate the differences and pain that others in the world may face. Not that having bed bugs is anything even close to someone with autism facing a world and trying to function in it, but it can jolt us and shift our little corner of the world and alter our sense of security and functioning.

    Butterfly, you are a fantastic mother and advocate for your son! I know he is so proud of you and loves you very much!!

  7. Butterfly1972

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    Posted 5 years ago
    Mon Mar 10 2014 11:23:09
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    And, I should add, that I understand articles like this one. I have lived days when I couldn't see the light at the end of the tunnel. When one meltdown led to another meltdown.....and I just wanted to go back to bed, throw the covers over my head, and call it a day....a week....a month.

    And pretty much every mom/dad in our group has had those same days/same feelings. It's tough, but we strive to not let those days out number the good days. We call, text, email each other for support and guidance. Some members of the group have older teens while others have preteens, so there is a mixture of "where our kids/teens are in life and what they are going though".

    Is there sadness and disappointment that comes with autism? Simply, yes. But, it is so much more than that sadness and disappointment. Yes, we have to learn coping skills, we have to learn all about weighted vests and belts, special earphones and special CD's to help regulate moods, stimming, and humming. We have to deal with the stares in a store from others who think we are "bad parents" because our children/teens are "acting out". But, if all we dwell on are those things, then life feels bleak. I have lived the dark side of autism, but, in all honestly, I have to find the brighter side and dwell on that instead.....for the most part. Every person has to find their own "balance" in life. It's not easy, but what in life is easy.....really.

    Ok, all, thanks for letting me share.

  8. Butterfly1972

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    Posted 5 years ago
    Mon Mar 10 2014 11:24:52
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    Daylight - 8 minutes ago  » 
    Butterfly, you are a fantastic mother and advocate for your son! I know he is so proud of you and loves you very much!!

    Thank you, Daylight. Honestly, from the bottom of my heart, thank you for your kind words.

  9. Butterfly1972

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    Posted 5 years ago
    Mon Mar 10 2014 13:09:27
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    theyareoutthere - 1 hour ago  » 
    The high functioning man that I knew in grad school (he was history): he just wanted to have his world view understood to some extent. What he knew about the nuances of history!!! (not my graduate degree). He didn't want to teach, he wanted to research and research and research, and sometimes he would write.

    I would bet anything that he has Asperger's. We have two teens in our group with Asperger's.....very intelligent, but also very focused on one thing.....always. One wants to be a veterinary, so all he wants to talk about is animals and he has a hard time when someone wants to talk about other things. The other is very focused on Legos.....all things Legos. And he's the same way, doesn't like to move the conversation away from Legos....at all. They both can tell you things about their chosen subject that blows the mind.....many hours of researching and learning.

  10. AbsolutelyFreaking

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    Posted 5 years ago
    Mon Mar 10 2014 13:35:30
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    Very touching thread TAOT and Butterfly.

    theyareoutthere - 2 hours ago  » 
    I was one time sitting in a radiation waiting room and there was a pre-teen and her mom waiting for what I assume was the pre-teen's treatment. The little girl was going to a concert that night and very excited. The mom sat listening and nodding and laughing. The minute the girl went in to treatment, the mother's face changed. She left and when she came back it was obvious she had been crying. I didn't say anything and was never sure if I should have. When the girl came back out, her mom was smiling and laughing again.

    I thought this was especially touching!

    . . . and Butterfly, you are right . . . we can only do what we can do . . . take one day at a time . . . play the hand we're dealt . . . and make the decisions/choices we think are right/best at the time! (Of course that doesn't mean we can't ever whine and cry that it's just not fair . . . but then we get back to doing what we gotta do!!!)

    xoxo

  11. theyareoutthere

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    Posted 5 years ago
    Mon Mar 10 2014 14:53:34
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    Yes, I haven't been a mother. But, I don't know..having not been through it...kind of like bedbugs...you can empathize but not "know".

    I'm fairly sure we would now label that young man as Asberger's. I was helping out in a grad project that I didn't know what the test was about. One of my professor's recommended that I go over to another department once a week for this project with 8 others. I was very, very uncomfortable in that group...making jokes, deflecting. The PHD student was deliberately testing how each of us reacted to having unsocial behaviors like interrupting us when we spoke, arguing with us, etc. It was weird and very disturbing to the people with autism.

    Sidenote: And, I kept on trying to figure out what they were doing and why. It was supposed to be about talking about our area of expertise in grad school, with a brief writeup for everyone to discuss. But, you would start talking, and people would start interrupting you. Once the PHD student leading it did it, it was like being pelted with snowballs. I tend to listen when in a new group, and realize I didn't know that anyone had any sort of diagnoses. So, it seemed like I had fallen, tripped down the rabbit hole into a very unfriendly dimension. To the people with autism, it wasn't arguing or personal. It was helpful. I later learned about ethnographies, and being with people with autism is like being with another culture. Not right or wrong.

  12. Butterfly1972

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    Posted 5 years ago
    Mon Mar 10 2014 16:07:19
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    theyareoutthere - 39 minutes ago  » 
    We all see those stories and how it impacts the family. I just finished watching HBO's True Detective (no spoilers) but it has a lot to due with the parents' grief. On the other hand, my boss had 3 children. The middle child has down's syndrome, and my boss said they grew to love what most people saw as a disability.

    Each family handles it all so differently. I have a friend from high school who lost her 9 year old daughter to cancer. One of my cousins lost his 3 year old daughter to cancer. Both are now divorced from their spouses. Having talked to both of them and then to the parents in my support group, whether it's a child being sick or it's a child with special needs, both are hard on the parents.....and their marriage.

    The divorce rate with both instances are high. It's very stressful. There is blame....."Is our child sick or does our child have a disability because of something one of us has genetically?" "Whose fault is this?" are common questions/accusatory statements made in many marriages. I've heard it said many times that having a sick child or a child with special needs can either rip a marriage apart or bring the spouses closer together. My marriage has suffered. Neither of us are bad people or bad parents. My husband is very supportive where our son is concerned and he is a wonderful father...honestly, he is the best dad I know. But the stress of the whole situation can be overwhelming at times. My husband works long hours and travels much of the time. I am a stay at home mom who homeschools. It's just stressful sometimes...and sometimes I feel like the one who gets left behind to deal with everything while my husband jets off on business to Cabo, Vegas, or Cancun. And not to tell all of you this as a "poor me" moment....not at all. But, since we were on the subject, and since others may read this who are going through the same thing, it's nice to know that you aren't alone.....and what you are going through is shared by others and you aren't on some isolated island.....so to speak. That somewhere, out there (I'm seeing a mouse singing in my head) there is someone else who knows "what it's like"....and understands.

  13. theyareoutthere

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    Posted 5 years ago
    Mon Mar 10 2014 16:41:21
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    No, it's not poor me. The part about my co-worker with the Down's Syndrome...which I removed because my post was TOO long...well...he dealt with it wonderfully...of course, this involved him having a job with 80% travel and leaving his wife and her parents...all of whom worked full time...to deal with the day to day support of a situation of 3 children in 5 years with the middle one a Down's Syndrom child.

    You do the best you can do. You are doing that, and it sounds like your son is thriving.

  14. Daylight

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    Posted 5 years ago
    Mon Mar 10 2014 16:53:50
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    Your son is very blessed to have you for his mother, Butterfly.

    We who read your messages are very blessed, too.

    Thank you for sharing!

  15. Butterfly1972

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    Posted 5 years ago
    Mon Mar 10 2014 17:09:12
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    theyareoutthere - 24 minutes ago  » 
    which I removed because my post was TOO long

    LOL....if your post was too long, then mine are......well, I think it's pretty obvious to all of us that God blessed me with the *gift of gab*. I break Paul Bello's *3 paragraph rule* on a daily basis....

  16. theyareoutthere

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    Posted 5 years ago
    Mon Mar 10 2014 17:14:47
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    Bello has a 3 paragraph rule? REALLY?????? (although his are informational in most cases, so that's cool).

    There's off topic, which you were on since you have personal experience with autism spectrum, and then there is REALLY off topic, which is talking about anyone you know who has a child with challenges (me :))

  17. Butterfly1972

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    Mon Mar 10 2014 17:27:14
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    theyareoutthere - 8 minutes ago  » 
    Bello has a 3 paragraph rule? REALLY?????? (although his are informational in most cases, so that's cool).

    I've seen him post a couple of times about the *3 paragraph rule* in reference to a rather long winded thread introduction.....and I always laughed....because, well...I knew I would break that rule pretty often.

    Yeah, his are mostly informational....although there are those, um, stories that can be pretty long as well. (now PB, if you read this, you know I love your stories....so don't stop posting them!!).

  18. bed-bugscouk

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    Posted 5 years ago
    Mon Mar 10 2014 17:36:09
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    Hi,

    I am glad the point of positive contribution was made.

    A few years ago I went to a case near London, all relatively "normal" until during the inspection phase they took it in turns to observe me while I worked and seemed to be making mental notes in different aspects. Now don't get me wrong I am happy to interact with people (for te most part) but am actually happiest when left to absorb myself into my work. I have always been that way and would think nothing of spending 4 hours literally frozen in front of a computer only my eyes and 5 fingers moving as I edited DNA data.

    The funny part came when I was filling in the paperwork and instructions to which they only interrupted me the once.

    After I finished I asked if they would not mind explaining what they did for a living, I am usually good at working it out but beyond education I was at a loss.

    Suffice to say the next 30 minutes were spent discussing the fact that they work in specialist education programs and specifically tailoring methods of teaching to how autustic people learn and perceive the world.

    I was complimented for finding the perfect job for my particular hiegtened functions and was able to share a few other suggested roles for people who do not fit into regular issue holes that the world is so fond of.

    I have a few other friends of equal and greater intellect in their fields who find social interaction extremely difficult and some with no comprehension for the feelings of others. I mention it because it's amazing what difficulties can be accommodated when the amazing mind inside is allowed to find what stimulates it.

    Sadly too often the world seeks to adapt people when the more creative solution is to adapt the environment.

    It takes a lot of strength and endurance for people to live with but I hope this shows some of the other side to the spectrum.

    David

  19. Butterfly1972

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    Posted 5 years ago
    Mon Mar 10 2014 17:51:07
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    Thank you so much for sharing, David!!! What you described fits my son almost to a "T".

    Actually, both of my brothers, and 4 of my male cousins (all on the same side of the family) are all the exact same way. And, they are all engineers....which I always find interesting since each and every time my son is tested, all the psychologists & therapists always ask the same question, "Is your husband an engineer?" My reply, is always, "No, but...." then explain the family connection.

  20. theyareoutthere

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    Mon Mar 10 2014 17:56:36
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    Note to Butterfly: An engineer I know stated that most engineers were fascinated by Legos as a kid.

    Yes, I'm in a business with a fair amount of small talk, and was formerly in a business with A LOT of small talk and golf. Don't know which drove me crazier. I'm not on the autism spectrum (I don't think), but was one of the caregivers to someone who probably is. It was long ago and we didn't know. But, we didn't require conformity. A school where you worked on certain subjects alone was selected. It was best suited at the time to the needs of the child involved. The math and science teachers "got it", but their fields were the child's strong point.

    That grad school experiment was interesting to me, and I became interested in the ethnographies of different cultures, and different world views.

    Anyway, some of our greatest contributors of the past 100 years may have been on the spectrum. I'm not an expert: I don't know. But, that kind of focus and interest in one thing is just one key point. Kind of like you can't say you have bedbugs due to skin conditions? You could be brilliant and focused, or you could be brilliant and on the autism spectrum. I wouldn't try to diagnose it.

  21. Butterfly1972

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    Posted 5 years ago
    Tue Mar 11 2014 6:59:56
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    theyareoutthere - 12 hours ago  » 
    Note to Butterfly: An engineer I know stated that most engineers were fascinated by Legos as a kid.

    Very interesting!! My son is a HUGE fan of Legos and would happily spend hours alone in his room each day just making new designs. When my brother comes to visit, they actually do spend hours on end building with the Legos. Interesting to think back and make the connections.

  22. bed-bugscouk

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    Posted 5 years ago
    Tue Mar 11 2014 9:25:51
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    Hi,

    Engineering is a good strong field for those who like to "work alone", some other options are architecture and bio-informatics. I was heavily into informatics when I worked in biotechnology and if I am honest part of that was because I would get left alone to work on projects that had 350,000+ samples and 150,000 bases to arrange. In my case the patterns I worked on were so complex and made up of compounded repeat sequences such that you ended up focusing on the differences to resolve the problem.

    That logic path is one I rely upon in trouble shooting bedbug cases as with a successful method fixing problems becomes about finding out why they are different to the "normal" rather than keeping treating them as if they are "normal". The most obvious and commonly encountered illustration of logic paths is Mac versus PC where the graphic design advantages of Mac's mean that you often start a project by specifying the parameters for the project whereas a PC is more open project then adapt.

    Most people find they fit into a preferred format but can not always explain why that is the case. Its also rare to get people who can switch between logic paths without them having worked on multiple programing languages in the past.

    I personally found lego frustrating because the pieces were not flexible and it required conforming to the pieces that were available but then again I was assessed as an unusual child.

    David

    I am happy to answer questions in public but will not reply to message sent directly or via my company / social media. I am here to help everyone and not just one case at a time.

    In accordance with the AUP and FTC I openly disclose my vested interest in Passive Monitors as the inventor and patent holder. Since 2009 they have become an integral part in how we resolve bed bug infestations. I also have a professional relationship with PackTite in that they distribute my product under their own branding. I do not however receive any financial remuneration for any comments I make about pro
  23. JustChecking

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    Posted 5 years ago
    Tue Mar 11 2014 17:36:22
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    Thanks for starting this thread, TAOT, to let us learn more about autism. Thanks all for sharing your experiences as I couldn’t finish reading all the linked stories. Butterfly, being a mom alone is such sacrifice. It is such a blessing that you can see the heartwarming side of things amid the challenges. David, now I know where the many ‘big’ but descriptive words come from.

    JustChecking, not a therapist / bug pro
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  24. bed-bugscouk

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    Posted 5 years ago
    Tue Mar 11 2014 18:50:45
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    Hi JC,

    If there was even a clear and simple way to describe the basic shapes of the building blocks and the lexicon of terms used to overlay the visual and odor inputs it would cut down on my verbiage.

    Oddly enough it's proven that they are transferable skills because I have and do teach people but often that starts off in odd places like aquariums where certain optical features can be demonstrated easily. Sadly the same things can't be captured on video simply because even at HD the human eye is better and works differently.

    Those skills are then transferred into a bedbug settings and the rest is about working and explaining all the different variables.

    Mind you like all things it helps if you start with the best if ingredients.

    David

  25. Butterfly1972

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    Posted 5 years ago
    Sat Mar 15 2014 8:38:09
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    http://www.nytimes.com/2014/03/09/magazine/reaching-my-autistic-son-through-disney.html?_r=0

    This was a story that was shared with me and I thought I would pass it along to all of you as well. It is very touching and brought more than a couple of tears to my eyes.

    The connection to Disney is particularly touching for me. Walt Disney World is the one place where my son acts like any other child. For the short time we are there, he is more verbal and interacts more with all of us. His therapists think that it happens because of the stimulation from all the rides. The increased stimulation is what it takes for him to "connect" more to the actual world around him.....and I am very grateful for that time with him.

  26. Daylight

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    Posted 5 years ago
    Sat Mar 15 2014 11:02:17
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    Hi Butterfly,

    Thank you for sharing the wonderful and inspirational story about Owen! I'm not quite done with it; I had to tell you that I love it! What a remarkable young man Owen is!! And he was a remarkable little boy too!!

    That's so neat about your son loving Disneyworld. I know there's a lot of theories out there, but I feel intuitively (no scientific basis for my idea) that the world of role play and relating to the characters in stories can provide insight into life and help children overcome their communication difficulties and help them with oral and written expression.

    Thanks again for this "treat" you shared. There are wonderful stories in the NY Times magazine. Love the Sunday edition of the paper--was able pick it up in my little section of the country. I must start getting it again.

  27. Butterfly1972

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    Sat Mar 15 2014 12:08:52
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    Hi Daylight,

    I'm so glad you enjoyed reading about Owen. It is a long article (it took me a couple of days to find the time to get all the way through it), but it was soooo worth the time.

    It is always amazing when parents can find that "special something" that reaches their child.

    Butterfly

  28. Suzanne

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    Sat Mar 15 2014 21:42:03
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    Butterfly! I knew I LIKED YOU! My oldest daughter (19) has Asperger's. Thanks for this thread. You're awesome!

  29. Butterfly1972

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    Sun Mar 16 2014 9:52:52
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    Suzanne - 12 hours ago  » 
    Butterfly! I knew I LIKED YOU! My oldest daughter (19) has Asperger's. Thanks for this thread. You're awesome!

    Awww, Suzanne!!! Actually, I have to give the credit for starting this thread to TAOT, but it was my pleasure to share my journey with all of you. I love all people with special needs with a very special kind of love, but those with any form of Autism absolutely captivate my heart.

    I have read many of your comments on different threads in the time that I've been back on the forum....and I have to say.....I LIKE YOU, TOO, Suzanne!!!

  30. Freeobugs

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    Fri Mar 21 2014 16:54:02
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    My 18 year old daughter is autistic. Awareness has come so far in these last 18 years. When she was born 1 in 10,000 were autistic. Now 1 in 88. That is a scary number. With the encouragement of friends and family, I wrote a blog a couple years ago documenting our journey. I think I'm allowed to post the link. Sorry NoBugs if it's against the rules. Feel free to remove if it is. http://www.autisticblessings.blogspot.com

    Just a survivor, definitely no expert.
    Autism Warrior
  31. theyareoutthere

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    Fri Mar 21 2014 19:48:30
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    I can't look at it now, but wil. So, bumping for others to see.

  32. JustChecking

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    Sun Mar 23 2014 0:18:05
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    Freeobugs, kudos to you! Not sure if I should call you by your and your daughter's names as they are shown in your blog. Thanks for sharing a no-sugar-coating story with us. I read some of your blog entries, and they triggered various emotions in me. You've been a great mom for your daughter and family. May God continue to provide extra-ordinary qualities for you.

    P.S. Since autism is new to me, I hope I didn't say the wrong things. If I did, it's not my intention.

  33. Butterfly1972

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    Sun Mar 23 2014 9:43:10
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    Thank you for sharing your blog, Freeobugs!!

    I could relate to so much of what you posted. So much of how a family approaches their life with autism is different......and, at the same time, so much is exactly the same. It's nice to be able to read a blog such as yours and realize just how much we, as parents to a child with autism, are striving just to do the very best for our child and to help them have the best life possible.

    JustChecking,

    I don't know if it is so much about sugar coating or not sugar coating as much as it's just about how each family looks at autism within their own family unit.

    Kind of like bed bugs.....some people deal with the issue and move on.....no big deal. While others have anxiety, stress, and often can't seem to just move on. If the first person were to write about their own experience with bed bugs, it would be much different than the second person's own experience.

    And that's the beauty of how we all see the things that we experience in life.....some we can relate to and some just gives us a glimpse of another person's thoughts and feelings. And *hopefully* it all leads to understanding and acceptance of each other.

    Hope that made sense!!

    Butterfly

  34. Freeobugs

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    Sun Mar 23 2014 16:53:37
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    Thanks for taking the time to read the blog. It was very healing for me to write down our experiences. I don't add much lately because she is doing so well, Praise God! I love if people learn from my family's experiences, and it does help to know you are not alone.

  35. JustChecking

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    You are welcome, Freeobugs. I'm so happy that your daughter's doing very well.

    I knew I have treaded on a sensitive subject. As we know, the spectrum of autism can range from mildest to severe.

    Butterfly, kudos to you, too. Thanks for your latest post. Somehow, you seem to be a very positive and cheerful person to me. Unless I miss it, I don't think you have gone into much detail about your son who has autism until this thread. I think you re-started posting at Bedbugger about 2 months ago. Although you mentioned briefly about your son in the Stress Busters thread some time ago, I tend to forget that you have an autism kid. Perhaps you have handled your situation really well. I got a better idea of you mothering an autism kid only after reading this thread. However, with Freeobugs' blog, I can see their pictures and their real names in the blog. It was like looking down from a roof seeing some of their day-to-day living unfolding in front of my eyes. Freeobugs also wrote the actual adjective, "no sugar coating", in her blog. I experienced the same after reading some of her blog entries.

    May God bless all parents with autism kid(s).

  36. Butterfly1972

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    Mon Mar 24 2014 7:38:00
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    JustChecking,

    No worries!! It's a sensitive subject at times, but what you said wasn't in any way inappropriate. I went through a time where I only saw the negative side of autism.....and it was stressful and didn't do myself or my son any good. I owed it to myself, and more importantly, to my son to focus more on the positive than the negative. It's not always easy to choose to see the positive. Life isn't always rainbows and roses, there are plenty of thorns that's for sure....lol.

    I'll share with you what I think about when I start to dwell on the negative.....When my son was 15 months old, we were on vacation in Gulf Shores, AL. While my husband went to drive our car around to the entrance of the hotel, I was in the lobby holding our son. Our son started to tremble and at that same time, a lady standing next to me screamed, "Oh my God, your baby is blue!!". Our son was having a terrible seizure. He had never had one before and I was frozen with fear. My husband saw commotion around me and came back inside, grabbed our son and with the help of the hotel manager, they started doing CPR. It took a while for the ambulance to arrive and our son was blue the entire time.....and was blue in the ambulance and unresponsive. It wasn't until we arrived at the hospital (40 minutes later) that he started to regain his coloring back. God spared our son that day. So, when some days seem harder than others or when he melts down during home school, that is what I remind myself of.....that he is with me for a reason. And to be thankful....even in the trying times.

    My faith in God gets me through every single day of my life. Last week was a really bad week for me, not my son, but for me. I struggled in trying to figure out just how I got to where I was.....and prayed.....a lot. I made some bad decisions that I needed to deal with and it wasn't easy, but God has a way of giving us the strength that we need....just when we need it most.

    I don't want to sound like I didn't enjoy Freeobugs blog. I absolutely did enjoy her writings....and connected with so much of what she wrote. It honestly is just about how each mom/parent/family needs to express what they deal with on a daily basis. I completely get where Freeobugs is coming from. She sounds like a great mom who is doing every thing in her power to help her daughter and her family. We all have a path to go down and hopefully sharing our different paths gives each other comfort in some way.

    Take care!!
    Butterfly

  37. theyareoutthere

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    Mon Mar 24 2014 22:33:27
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    Butterfly1972, we all have made bad decisions and we do the best we could at the time. We all have bad weeks. We're allowed to, even when other things are going well. Sometimes, the bad times and bad decisions are found to have meaning YEARS later...sometimes there was no meaning...

    This isn't about autism, but I think it would be unfair to label you ONLY as a Butterfly, only as a mother of an autistic son, only as from where you live, etc. You are more than that, and God (or higher power for others) sees it. When will you???

    Hope I didn't offend, but it sounded like you were hurting.

  38. Butterfly1972

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    Tue Mar 25 2014 7:34:06
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    TAOT, Thank you so much for that.....and not offended at all!! You're right, I am hurting. And it stinks...big time. I've learned a valuable life lesson....now I am just trying to balance the learning of that lesson with not letting it harden my outlook on life. And that really is a struggle for me right now.

    Again, thank you for your words....they truly meant a lot.

  39. Freeobugs

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    Tue Mar 25 2014 19:50:19
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    Butterfly, how old if your son? Believe me, I know and understand your hurt. You are not alone in Autism or bed bugs!

  40. JustChecking

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    Tue Mar 25 2014 19:54:52
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    Thanks for sharing, Butterfly. So sorry that you had to go through the blue baby ordeal.

    Hugs.

  41. Butterfly1972

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    Wed Mar 26 2014 8:10:40
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    Hi Freeobugs,

    My son is 13....so we are just entering into the world of teenagers with autism. Any advice or suggestions would be very much welcomed!!

    Hi JustChecking,

    Thank you!!......and hugs right back at you!! I love hugs....they are the best.

  42. Daylight

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    Wed Mar 26 2014 8:14:30
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    Hi Butterfly,

    I'm sorry you've been feeling low. Here's hoping today is a better day. You have a remarkable ability to help others feel good. You should know that you radiate love, hope, and joy. Grasp onto that too. You area blessed, just as you bless others. Thanks for your inspiration!

  43. Butterfly1972

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    Wed Mar 26 2014 16:50:31
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    Awww, thank you, Daylight!!!! You always seem to know just what to say and when to say it. I always enjoy reading the posts you send to myself and to others. They always leave me feeling a bit lighter than before I read them. YOU are truly a gift to this forum. And hugs to you!!! (I'm a "hugger"....lol)

  44. Daylight

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    Wed Mar 26 2014 18:17:44
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    Butterfly,

    Thank You for your kind and generous words. You make it so easy to be positive--your inspiring messages must be contagious! Kind of like a ripple effect--you just radiate good cheer and peace to all. I'm sure you are the life of a party! You have certainly livened up the forum with your own brand of sunshine!

    Hugs to you, too. I am a hugger but have stopped all close contact until I am confident all is well in my little corner of the world. I know that someday life will be beautiful again.

    Have a nice evening, Butterfly

  45. Freeobugs

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    Ahhhhh yes! Teenage autism. Liberty and hormones and no wat to express yourself. Fun times. Fun times indeed. My daughter is now 18, and I remember those days well. Its rough for a typical kid, let alone an autistic one. Amanda is now pretty high functioning, so I did explain to her how her body is changing, and her feelings. They are erratic and emotional, there is no way around that. I allowed her the time she needed to herself, yet I still didn't put up with any sass from her. One time, she came at me. Fists clenched and ready to go. She asked me if I wanted to fight. I told her i didn't want to, but I would. I would win, and she should be prepared for that, so if she insisted, to just get it over with. She backs off and told ME to calm down. LOL.

    This worked for me. I don't know your story, or how high functioning your son is. But everything is easier than the toddler years :).

  46. theyareoutthere

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    Wed Mar 26 2014 18:40:10
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    Boys can be challenging enough as pre-teens and teens, and each person has to do what works..and forgive themselves for the misses...the now man I knew on the autism spectrum had several violent outbursts in his teens, and it still "pains" him if that is the right word. It is the lack of control. Some difficult decisions were made within the family, but 5 years later...alll was well.

  47. Butterfly1972

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    Thu Mar 27 2014 7:51:42
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    Hi Freeobugs,

    My son is high functioning. He is off the charts in math (he thinks in numbers), but he struggles with reading comprehension. I have learned that he can read the exact same text on the computer as he just read in a book, and he can comprehend what he read on the computer and not comprehend what he read in the book. His mind and the way it works amazes me!! And he keeps me on my toes in regards to figuring out exactly what it takes to help him learn.

    He is a pretty easy going person. He has always been very loving, and will still reach for my hand when we are out in public and he is feeling anxious.

    As he gets older, he is struggling more with anxiety. He cries very easily over little things. But, I've talked with moms of "typical" sons the same age and they cry, too, so I don't know how much is related to autism and how much is just typical behavior for a teen. My son is my oldest, so it's hard to know what typical behavior is vs. autism behavior.

    Butterfly

  48. theyareoutthere

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    Thu Mar 27 2014 9:33:22
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    The boy I knew (who is now a man) reads things like David and Goliath, but he didn't have much reading comprehension until his 20s. I used to write his book reports in high school, and no one could convince me it was wrong. It was odd because he is a very moral/ethical person and I'm usually...well, I know it's wrong. But, I didn't think it was back then. It was like, I can read the book and write it in 3 hours, and he'll be struggling for a week. Why would I let him struggle? There may be a reason why I couldn't have children...you see a lot of struggling.

  49. Butterfly1972

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    theyareoutthere - 23 minutes ago  » 
    I used to write his book reports in high school, and no one could convince me it was wrong. It was odd because he is a very moral/ethical person and I'm usually...well, I know it's wrong. But, I didn't think it was back then. It was like, I can read the book and write it in 3 hours, and he'll be struggling for a week. Why would I let him struggle?

    Connection!!!! I did the same thing for a close friend in high school and then in college. He struggled with reading and writing reports, while I could sail through a book and enjoyed writing. We countered it by him "helping" me with my math homework. He was a wizard at math, and math is very hard for me....even to this day.

    My son helps my daughter in math during home school. Which is great for him because it helps him with verbal communication.....and he often teaches me a thing or two about math.

    There may be a reason why I couldn't have children...you see a lot of struggling.

    It is hard to see the struggling and not want to just step right in and do it for him. But, it is so rewarding after having seen him struggle with something and then all of a sudden "get it". That feeling that I get in that moment when it finally makes sense to him is indescribable. The look of pure joy on his face......well, I love that look.

  50. theyareoutthere

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    Butterfly, maybe it is because we are Butterflies, but we have a lot of similarities.

    Have a good weekend, Butterfly 2!

  51. Butterfly1972

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    Sat Apr 12 2014 8:54:38
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    In honor of Autism Awareness Month and for all the awesome people who bring a special kind of light into our lives.....

    "Everyone is a genius. But if you judge a fish on its ability to climb a tree,
    it will live its whole life believing that it is stupid."

    ~ Albert Einstein

    One of my favorite quotes by Albert Einstein.

  52. theyareoutthere

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    That's one of my favorite quotes of his as well.

  53. theyareoutthere

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    A new CNN article on IPADs. When I was more involved in a school for children with autism, this wasn't an option yet:

    http://www.cnn.com/2014/04/09/tech/innovation/autism-tablet-apps/index.html?hpt=hp_bn5

    I have no idea if this works well or not, but ASDA (Austism Service Dogs of America) and an old article about Xena the warrior puppy with her autistic boy:

    http://autismservicedogsofamerica.com/about/

    http://www.today.com/health/xena-warrior-puppy-rescued-abuse-helps-8-year-old-boy-6C9648595#xena-warrior-puppy-rescued-abuse-helps-8-year-old-boy-6C9648595

  54. Butterfly1972

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    Tue Apr 15 2014 13:02:37
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    Thank you so much for the links, TAOT!
    The iPad link was very informative. Some of it I had heard before, but I didn’t know about Flummox and Friends. I have downloaded it and I’ll be passing that information along to my friends. Thanks again!

    I love service & comfort dogs and all that they can offer in all kinds of situations.

    We have a golden retriever that comes from a linage of comfort dogs. One of her “cousins” traveled (with her companion) to Connecticut and helped to provide comfort to those affected by the Sandy Hook tragedy. She was even on Good Morning America to promote awareness of comfort dogs. I thought that was pretty cool.

    Our golden is very in tune to our son’s needs. She isn't a trained autism service dog, but she has a way about her that we can tell that she “senses” our son’s different needs. When he is having a particularly bad day, she won’t leave his side. On those days, they can often be found sitting quietly in his room with her head in his lap. She is definitely a blessing to our family.

    We brought our golden home at 8 weeks and she has spent every day with our son since that time (she is now 10 months), so I wonder how much of her being so in tune to his needs is from growing up with him. I don’t really know. Just my guess.


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