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Stay Out of Bad Neighborhoods (in your mind) and Mindfulness

As an autism parent, worry is never far from one’s thoughts.  My wife and I have been attending a Mindfulness group for parents of kids with special needs.  It’s part of a research project and they measure our stress levels several times (saliva samples to measure Cortisol levels, blood draw, and periodic questionnaires) over the course of the six week program.  The group focuses on learning various techniques related to Mindfulness-Based Stress Reduction.    There’s a lot of Buddhist influence, but the gist of the training is to get us more focused on living in the NOW, which is where our life actually happens.

This is hugely beneficial to anyone parents a child with special needs.  All too often we live in the past (did I cause this, what if I had done this treatment, what if I had done so and so when my child was younger) or the future (what will happen when I am gone, what if my kid wanders, drowns, is abused, etc.)  Just getting more accustomed to spotting these thoughts is very helpful in bringing us back to the present.  We often take something and “add to the story” to the point that we are focusing on the worst possible outcome.  A saying that has been bringing me back to the present when I start down the auto-pilot path to doom and gloom is “STAY OUT OF BAD NEIGHBORHOODS.”  Dwelling in the worst scenarios and replaying them over and over again robs us of the present moment, which in reality is all we have to work with.

Much like the safety instructions on an airplane that we cover our own faces first with the oxygen mask before that of our child, parents of kids with special needs need to make a real effort to take care of themselves first.  Just like with the oxygen example where taking care of the child first could result in both of you being dead, ignoring your own needs can mean that you aren’t there for your child.  You both suffer in the long run.

“The present is only this very moment.”

What is Mindfulness?

  • Mindfulness is simple: paying attention in the present moment.
  • Mindfulness is profound: the present moment is where our lives unfold, where our tenderness and our strength reside, and where choice is possible.  It can inform our interactions at home, on the freeway, in the supermarket, and at work.
  • Mindfulness is kind: it asks that we cultivate compassion for ourselves and others as we move through life.
  • Here’s how Wikipedia describes the benefits of mindfulness-based stress reduction

    The program is visited by many individuals, ranging from those who are sick, mentally or physically, to professionals and businesspeople. The reason for this is that mindfulness-based stress reduction programs have a variety of very powerful benefits for those practicing the techniques and meditation offered. These benefits include an increase in the body’s immune system’s ability to ward off disease, a shift from a disposition towards right prefrontal cortex, associated with anxiety, depression, and aversion, to the left prefrontal cortex, associated with happiness, flow, and enjoyment. Other benefits include a different and less invasive way of healing patients with chronic pain related illnesses, a reduction in debilitating stress and the hormones that come along with it,(such as cortisol,) and an improvement in one’s overall happiness and well-being in life.

    In the conclusion of “Mindfulness-based stress reduction and health benefits: A meta-review”, the 2003 meta-review mentioned earlier, we read, “Our findings suggest the usefulness of MBSR as an intervention for a broad range of chronic disorders and problems. In fact, the consistent and relatively strong level of effect sizes across very different types of sample indicates that mindfulness training might enhance general features of coping with distress and disability in everyday life, as well as under more extraordinary conditions of serious disorder or stress. Another recently published study employing different inclusion criteria and a somewhat divergent strategy also provides additional support for the effectiveness of mindfulness interventions. In both investigations, improvements were consistently seen across a spectrum of standardized mental health measures including psychological dimensions of quality of life scales, depression, anxiety, coping style and other effective dimensions of disability. Likewise, similar benefits were also found for health parameters of physical well-being, such as medical symptoms, sensory pain, physical impairment, and functional quality-of-life estimates…”[2]

    Three Stress Reduction Exercises

    1. Practice Mindfulness
    2. Mind-Body Exercise
    3. Breathing

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    Deaf with Autism Revisited, You are not alone

    Since my original post on this topic in 2008, Deaf with Autism , there have been several comments along the lines of “I thought I was alone”.

    I got permission from the following commenter (Tarika.Francis) to re-post her comment as a standalone post. If any one can help, please contact her via Facebook and continue to leave comments on this topic.

    The dual diagnosis ups the difficulty level substantially in getting help for either disorder. As Tarika points out, those that can help with autism are stymied by the deafness, and those that can help with the deafness are stymied by the autism. This for sure puts parents like Tarika in a conundrum.

    Relief and joy! And here I thought that my son Dominic is Unicorn among Zebras. He was born deaf. Profound bilateral sensorineural. We tested the cochlear implant when he was a year old, but without success. I always suspected that he may have autism. Unlike many children, There was no regression. Besides natural changes and maturity, skills that come with normal growth, his “autistic traits” are pretty much the same that he has been presenting since his youngest days. When he was three years old, I took him into a behavioral pediatrician and he was officially diagnosed with “classic autism” based on the behaviors I described. I have been learning “ASL” on my own over the years. This is the best method for him in communication, while some schools may not agree. At school he has been introduced to the PECS (picture exchange system). AT home he stims on the pics, chews on them, and is otherwise unresponsive to the concept of the illustrations. We like Signs! We have bounced around in the public and state school system in Atlanta, GA since he was 3. There is no school in our area that has a program for autism and Deafness. He went to the Atlanta Area School for the Deaf and was placed out into a school for autism, because of his profound autism behavior characteristics (mainly the premise that he couldn’t be taught to learn with ASL because of low eye contact and focus.) Last year in in the pre-K autism program, he made zero academic progress on his IEP goals. He was in a classroom where very limited sign language was known by the staff and he continued to present very little eye contact and attention … This year he started Kindergarten. And guess what? He was put in a program for the “Severely Intellectually Delayed.” This is a very disappointing matter, as every parent has high hopes for their children. I have been told many times that anywhere he goes, a specific program will have to be tailored to him, because there just aren’t many other children out there with this unique combination. And then there is the idea of which disability do you treat first, can you treat both at the time? It has been so frustrating. This is why i want to do anything that I can to improve his behavior so that they will see that he is intelligent and with help, they can teach him. I have not found a doctor, teacher, or therapist who is able to help us with both Deafness and Autism in 5 years. The professionals who help with Deafness say they cannot because of his autism behavior. The people who treat Autism say they can not help because he can not hear……. I’m so frustrated by this!!!!! Now I am a single mother. : < If anyone else is out there searching for answers and has Facebook, please friend me!! Maybe we can share info. Tarika M. Francis

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    This too shall pass, unless it’s autism

    Platitudes that make normal people feel better about there problems often just don’t apply to parenting a child with autism.  #1 on that list is “This too shall pass.”  Um, not really.  I guess this is technically true since all things eventually pass.  Maybe it should be “This too shall pass, when you’re dead” although that doesn’t exactly give one the warm and fuzzy feeling of the original.

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    autism friendly place to watch July 4th fireworks in New York City?

    anyone know of anywhere sans lines and bazzillion people?

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    Airport Security, Autism, and Vagus Nerve Stimulator

    Oh, joy, I am so looking forward to getting through airport security tomorrow with a 10 year old with autism.  Added to this joy will be explaining to the TSA staff about the Vagus Nerve Stimulator (VNS) implant.  This will be our first trip with this device.  I’ve been told by some to not even try explaining the seizure aspect and just call it a pacemaker.

    We’re used to getting through with our special diet cooler, but every time is a crapshoot.  One trip, they barely give us any attention whatsoever, the next you would think our last names are bin Laden.

    If it were just me, I would avoid being herded through the big x-ray scanners, but I suspect it will be easier if we just submit and do what Big Brother wants us to do.  Really don’t care for a meltdown at the security checkpoint.

    Wish us luck.

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    Autism Parents: 80% Divorce Rate

    While long since debunked, I still hear the 80% number all the time.

    Many people have heard this statistic as it has been cited frequently throughout cyberspace and beyond: “Parents of children with autism have an 80 percent divorce rate, much higher than that of the general population.” Although everyone seems to quote it, including the hit television show Parenthood (see the video below), this statistic has yet to be connected with any empirical evidence. In fact, a study last year “revealed no evidence to suggest that children with ASD are at an increased risk for living in a household not comprised of their two biological or adoptive parents.” According to the study, 65 percent of typically developing children lived in a two-parent household, compared to 64 percent of children with an ASD. - http://www.autism-society.org/blog/study-shows-a-diagnosis-of.html

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    Autism Parents Community

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    Google Chromebook: Autism Tested, Dad Approved

    Yesterday was like an unexpected Christmas Day in my world.  When I arrived home from a weekend away, I was pleasantly surprised to find a brand new Google Chromebook CR48.

    This is a laptop-looking device running the Google Chrome OS. For the geeks amongst us, this device falls somewhere between a pure cloud client and traditional laptop.  I applied to be a part of the pilot program last year and thought the time frame was long since past when I might be accepted.   I don’t recall much else of what I said in the application letter, but I do recall that I told them the unit would be Autism-Tested.

    Basically, the web browser is the operating system.  This is a machine that my 9 year old with autism should readily accept since to her, the web browser pretty much IS the whole computer.

    Straight out of the box, the machine did not disappoint.  She went right to playing with it on her favorite websites with zero issue.  Durability will be the big test.  To say my daughter is a little rough on computers would be an understatement.  Good luck, Mr. Chromebook.

    While I have not yet spent any grown-up time with the Chromebook, it looks to be a sweet little machine also capable of getting the job done when all you need is the Internet.  A web-based Augmentative and alternative communication (AAC) would be a really nice app for this device.  Ala - Proloquo2Go for Chrome

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    Autism, Too much to carry

    Autism is on the verge of entering a new degree of difficulty in our world.  My daughter is approaching a size/weight where it is more and more difficult for me to pick her up.  This means that the risk factor of being in public goes up significantly.  Going out in public for us is somewhat of a crap shoot.  About 90% of the time, it is not an issue.  We can go anywhere.  10% of the time, it is a complete disaster.

    However, I can still pick my daughter up and leave whether she wants to leave or not.

    In the near future, this will not be the case.  She will soon have the advantage.  The “drop and go limp” technique that I am sure most parents of kids with autism are familiar with, will be an even more powerful weapon in her bag of tricks.

    So, we need to really amp up the work with her on transitioning and being in pubic, OR Daddy needs to start hitting the gym and doing some weight training!

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    Who Will Care For Dana | Parade.com

    Who Will Care For Dana | Parade.com

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