Tag Archives | Autism

When the strongest among us falls

Autism parents. As differing as autism children.

Some go so far as to separate them into labels such as ‘warrior’ or ‘victim’. Some call them ‘special people’ because God only gives ‘special children’ to those types. Others see them as bad parents that let their children ‘get away with stuff’ what they would never have let happen themselves.

We’re just people. Autism parents are people. Same strengths… same… weaknesses…

Earlier, my Facebook timeline began to repeat one name, over and over again. It was the name of a woman that I’ve met on Facebook. It was a woman that I’ve seen in the news. A woman that I’ve had the pleasure to talk to. She’s commented on this blog.

Before you read the news story that everyone was talking about, before you form any opinions on what you think may have happened or start to question what lead to this or anything else, I want you to consider this:

She was one of the strongest autism parents that I’ve met.

http://record-eagle.com/local/x312422563/Charges-loom-for-Benzie-woman-in-murder-suicide-attempt

Another autism parent on Facebook shared a similar link with the caption “I just don’t understand it.” but I do understand it.

Still, I can’t help but to think how fragile, not just life is, but our own self worth, our inner well being and more so than that, our strength to keep it all up.

When the strongest among us falls, how do the rest of us carry on?

The answer came to me, not once, but twice this week as I watched autism parents share their private phone numbers on a not very private Facebook wall so that anyone, it doesn’t matter who, can call them if ever they need someone to talk to.

Now, I don’t condone nor do I think I could ever forgive attempting to take Issy’s life as well (if everything did happen as the reports are saying they did). No matter how hard anything ever got, I could never do anything to hurt my boys.

But I do understand how dark it can get. The first time autism parents shared their phone numbers this week, it was for me.

So how do we carry on? Well, I think all of those incredible autism parents already have the answer: by being stronger than our strongest. And the only way that can happen is with numbers. 2 people are stronger than 1. With enough people, you can balance any weight.

A group at it’s weakest is still stronger than an individual at their strongest.
For an individual will tire eventually, no matter how strong they are.

Which brings me to the last words from the last post on her blog:

There is so much more to say.  I’m just too tired to write more.
All my love,
Kelli
http://thestatuswoe.wordpress.com/2013/09/03/when-a-power-player-takes-you-down/

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The Story of Luke – The autism movie you have to see

The Story of Luke is a movie that I’ve been following closely for some time. Even while they were filming, I was already a fan of their Facebook page and eager to see the end result. I’m very pleased to report, I was not disappointed.

Synopsis

95min. A comedy about Luke, a young man with autism who is on a quest for a job and a girlfriend. Starring Lou Taylor Pucci, Seth Green, Cary Elwes and Kristin Bauer.

The Story of LukeReview

The first thing the synopsis tells you is that it’s a comedy about Luke, which while true, is such a very small part of what this movie really is.

First of all, while it will make you actually laugh out loud in a few places, in others it’ll simply have you smiling and thinking “I totally get that.” While in other places, it will make you want to stand up and shout “You tell’em!!” and then shortly after have you crying your eyes out. And I’m a dad. I’m not supposed to cry. I did.

While this is the story of Luke, hense the title,  it’s also the story of those around him. Because in this film, even though almost everyone around him is “normal”, no one around him is really all that normal either. There’s the sometimes crazy, sometimes wise grandfather who even manages to be crazy and wise at the same time in some instances. There’s the depressed aunt, the midlife crisis uncle, the rebel son/cousin and then the doesn’t fit in with society daugther/cousin. There’s many more that Luke meets along the way as well.

I think the closest movie/story you could compare this to is Adam. I don’t know if you’ve seen that but it’s about a lonely man with Aspergers and his relationship with a girl. In Adam, the movie is very much about Adam, he’s always the focus. But it does give you a very real world glimpse into the life of a person with autism/Aspergers.

In The Story of Luke, while Luke is obviously the main focus, there’s so much more going on. His family evolves, his grandfather evolves, the people he starts to work with all evolve. His efforts, his honesty, his quirkiness and his mere presence makes the lives of those around him change. And it all feels very real. You never get the sense of there being a script or that someone had written this. It all feels so natural, as though it’s a true story.

One big difference I’d like to point out, between Adam and The Story of Luke is that, in Adam, it can be quite painful to watch because you envision your own child as Adam, later in life, living these struggles. It quite literally hurts to imagine your child growing up to be Adam and having a difficult life. It’s very well done in that sense. With Luke however, you never quite get that sense of your child being in his place. And it’s not a bad thing!

As a man on the autism spectrum myself and having a son with autism, I never once got the sense Luke was trying to be me or that my child could be Luke some day. I did have a few dozen “that’s just like my son!” moments though.

Luke stands apart and while very perfectly representing life on the spectrum, he never comes off as representing all autistics, only himself. And that’s quite powerful when you think about it. To relate to him, to see so many similarities and yet, seeing him as being his own man and not just a future version of your own child, is a feat not easily accomplished.

The movie is very much in your face with a lot of swear words, which are very cleverly done actually, very in your face boldness and off the wall terminology that will clearly make little sense to Luke but it’s never done to an extent that you feel it’s vulgar. Still though, it’s probably best to not have the little ones sit in to watch with you if you don’t want them hearing that language.

The movie truly is the story of Luke trying to be a man. Not just to “get a girlfriend” as in Adam but to walk out the door, get a job, get a girlfriend and, as his grandfather would say, “get his $hit together”.

I’ve watched The Story of Luke twice in one day and I still want to watch it over and over again because it’s just so well done. Each and every character is so perfectly portrayed and real. Luke is just so lovable, you really can’t help but want to be there, in the movie, to tell him how awesome he really is. Also, not many movies can shock me with what it says and then make me want to stand up and cheer at how the protagonist responds and then make me want to cry just a few scenes later but this movie does all that and more. And it always feels natural. Like I’m watching real life unfold in front of me.

The Story of Luke is not a movie to put in place of other movies about autism but it’s definitely a movie that you absolutely must include in your autism movie list. You’ll relate, you’ll learn, you’ll adore, laugh and cry.

I guess what I’m trying to say is, I highly recommend that you see this movie.

Awards

  • Audience Choice Award for Best Feature Film at the 2013 Omaha Film Festival
  • Best Film (shared with “Missed Connections“) AND the Audience Award for Best Narrative at the San Luis Obispo International Film Festival
  • Best Narrative Feature Award at Festivus Film Festival
  • Audience Award at SF Indie Fest  (The San Francisco Independent Film Festival)
  • People’s Choice Award for Best Film at The Saint Augustine Film Festival
  • Best Film, Best Actor (Lou Taylor Pucci), Best Director (Alonso Mayo) & Best Trailer at the Irvine International Film Festival
  • Audience Award at the Bahamas International Film Festival!
  • “American Indie Audience Award” from Fort Lauderdale International Film Festival
  • “Best Film” at the San Diego Film Festival

When/Where to see it

The Story of Luke comes out on April 5th in select theaters but it will also be available on iTunes as well.

Check out the trailer here: http://trailers.apple.com/trailers/independent/thestoryofluke/

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The yin and yang of parenting on the spectrum

We’re coming up on the one-month mark for a new ADHD medication for our seven-year-old son, who’s also on the autism spectrum. It’s always tricky to be objective about tracing results back to causes, but so far, the results are encouraging.

For the first time, he’s asking open-ended questions. Questions that indicate a curiosity about how things work, from a car engine to the mechanism behind a video exhibit at a museum. He’s been able to curtail some of his impulses – like doing the puzzle he just opened– when I announced it was bedtime.

The tattoo I got for my son and daughter works for my husband and me, too.

The tattoo I got for my son and daughter works for my husband and me, too.

It’s gratifying to see, not to mention a relief. After a bad experience with a different ADHD med last summer, the absence of negative

consequences is a positive in and of itself.

For me, though, it also provokes guilt. Because the only reason our son is on this medication is that his dad pushed for it.

Feeling burned by the first med, I resisted our doctor’s suggestions to try this one for almost six months. My husband didn’t oppose me, but gradually, after receiving input from school, he began his own low-key lobby. Finally, reluctantly, I agreed to try it.

And so far, it appears he was right and I was wrong. Thus the guilt. Did I deny our son six months of growth and progress because of my supermom proclivities? I’ll fix it/handle it/solve it myself. I don’t need any help from some drug.

This isn’t the first time my husband has been the ballast in parenting decisions. It goes way back to infancy, when we started part-time daycare. I felt like I should handle all the caregiving myself. That’s what a good mother does, after all. Even though I hated it and was going stir crazy at home all the time.  Mike took the reasonable approach. Let’s try it. It doesn’t have to be permanent.

Seven years, two kids and one sane mother on, it was by far the best decision for our family. Yet I still don’t know if I could have made that decision myself. So on this, my first post on Autism from a Father’s Point of View, I want to ask: What is it about dads? Is there something in the Y chromosome?  Is our dynamic reflected in your parental roles, too? And is it the balance that matters most, no matter who provides the yin and yang?

- Cari Noga is a writer in Michigan and mother to a son on the spectrum and a neurotypical daughter. You can read her blog here. In April she will publish Sparrow Migrations, a novel about a 12-year-old boy with autism who becomes obsessed with birds after witnessing the “Miracle on the Hudson.”

 

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The Right Diet in Autism

At present, as a recent survey has shown, 1 in every 88 children in the United States is affected by Autism Spectrum Disorder (ASD). ASD covers a wide variety of disorders prevalent in children ranging from inability for social communication and interaction, a lack of interest in their environment to an inability to recognize patterns or use new words. With normal medical science unable to provide any compelling results in the treatment of autism, most parents are turning to alternative treatments, including restrictive diet.

Autism Diet

During studies concluded by several institutes it was found that most children affected by autism have some form of gastrointestinal disability. These studies have suggested autism as being a result of a metabolic malfunctioning or disorder. This malfunctioning usually manifests itself in the form of poor cellular lining of the intestines. In normal humans, any food intake is broken down to its lowest form and finally absorbed. In children diagnosed with ASD, it is hypothesized that partially broken down components, known as peptide proteins, are able to easily mix with the bloodstream. These peptides head to the brain, targeting certain receptors which results in behavioral and sensory changes.   These findings have not been primarily concluded by medical sciences, mainly because of the wide variety of disabilities and symptoms exhibited by the autistic child.

However, several parents have reported an increase in the response time of their children by eliminating various foods from their diet. This primarily includes foods with high gluten or casein content. Gluten is a form of protein found primarily in rye, barley or wheat. Several baked products contain gluten. As for casein, it is primarily found in milk, dairy products and soy products. Most autistic children have a strong dislike for particular smells and foods and some therapists suggest not allowing the child to eat until so hungry that he or she will consume the food they dislike. Forcibly making them intake those foods might also produce very undesirable effects.

A Gluten Free Casein Free (GFCF) diet might be hard to implement immediately. It is usually advised to stop casein products first. During the first month, all casein can be eliminated out of the body. Finally stop gluten products. A 6 month trial is recommended for most diet plans. Many parents forego with corn products too, primarily because they contain proteins similar to gluten and casein. Reduction of intake for foods with high toxic levels and a low salicylate diet (apples contain salicylic acid), have also been reported to help.

Autism is a complex condition and some scientists have even shown a genetic component. Various studies and genetic DNA tests have indicated that around one fifth of cases can be linked to a mutation on a gene. These kind of studies can help determine the hereditary nature of the illness and estimate the chances of siblings both being autistic. Geneticists are focusing on particular sequences of DNA known as single nucleotide polymorphisms which they believe are linked to autism when found to be present.

Many people diagnosed with autism are known to over eat as well. Often their brain does not realize that the body is full, due to a faulty hypothalamus. However, a more psychological cause like coping with stress or cravings for a specific food can be equally responsible. This should be looked into. But for any developing child, a balanced food plan is necessary. Foods like rice, eggs, fruits, vegetables, nuts or oil are allowed in a GFCF diet. Finally, a prior consultation with any registered dietician is highly recommended before any diet plan is implemented.

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Autism: An Informative Study/Guide

Autism is a complex neurological disorder of human beings which include different impairments in social and communicative study. It is mainly caused due to connections of the nerve cells in the brain being different than in an average human. However, that does not always result in a derogatory condition. Indeed, it has been observed that while most autistic people have an inability to communicate properly with the society, their non-verbal and cognitive skills are far higher than any average person. These include various fields like drawing, music or their capability to learn new things. Autism can be recognized in the first three years of any child’s life.

No two persons in autism have the same behavioural pattern. That is what makes autism so difficult to control. Autism can be classified into various forms including the Autistic Disorder, the most common form of autism. This is characterized by inability to communicate verbally and performance of repetitive behaviours. In Asperger’s Syndrome, people are characterized by often high non-verbal test IQ, but possession of limited interest in society. For girls, Rett Syndrome is the most common form. These girls start normally, but by 1 to 4 years, they develop signs of autism. Pervasive Development Disorder (or PDD) is used for children who do not fit into any known categories. Along with these, another term common in context to autism is Childhood Disintegrative Disorder, used to classify children who develop normally for 2 years but regress after that.

The Genetics of Autism

Autistic children can be taught to behave normally with people by repetitive advices on how to interact properly. It has been found that autism is more common in identical twins who share the same genetic blueprint than in fraternal ones. The concordance rate in monozygotic twins is between 60 -90%.  This means that monozygotic twin studies, autism appeared in both twins in 60-90% of cases. Autism is undoubtedly connected to genetics at some level, however as recent studies have found out, 20 of the normal genes found might be involved. Various genetic tests are under way to determine the exact mutations responsible for the condition and scientists have identified several genetic abnormalities in autistic people. Dealing with all variations of such a large number of combinations is highly time consuming and hence, the exact cause of autism has not been determined yet. Two genes identified and linked to the condition are Engrailed 2 (EN2) and the Serotonin Transporter.  EN2 abnormalities are linked and believed to cause structural changes in the cerebellum, a part of the brain related to motor skills and cognition.

Genetic DNA testing and analysis of the human genome has classified 98% of our DNA as “junk DNA”. Whilst the term is misleading because of the connotations of the word “junk”, we simply do not know what purpose junk DNA serves.

Associated conditions:

  • Autism is often seen alongside fragile X syndrome, a condition caused by abnormalities on the X chromosome affecting males more than females and often resulting in mental retardation.
  • Although rare, autism also sometimes manifests itself in individuals suffering from tuberous schelorsis.

Studies have pointed that parents with schizophrenia are more susceptible to autistic children, and the chances of autistic children having a new pair of genes missing, as compared to their parents, is huge. Flu or fever for more than a week during pregnancy can also double the chances of bearing autistic children. Though no fixed treatments for autism exist, early treatment of diagnosed children have often proven to be helpful.

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