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The kind of self advocate that I want my child to become

By on February 11, 2013 in Autism
Tyler and Cameron - Brothers

Tyler and Cameron – Brothers

I am writing this because I’ve had quite a few people ask me if I want my son to be an advocate like me or what I would hope he’d say. I thought this would be a good time to address those questions.

If you’ve read anything from me in the past, you likely expect the answer from me to be something along the lines of “a positive role model that is respectful and understanding of everyone.”

And yes, should he truly wish to speak up and raise awareness, understanding and acceptance of autism, that is pretty much the exact type of advocacy that I would love to see from him.

I understand that some advocates take the “fight for our rights” approach and that is very much needed as well. I won’t lie. Yes, some get caught up in the battle and it becomes hateful and negative… but this isn’t about that right now.

There’s more kinds of advocacy too. As much as some might disagree, those that fight for health care changes, particularly those surrounding vaccines, are advocates as well. Those that fight to cure their now adult sons and daughters that are still living at home or in a home, they are advocates.

There are even some self advocates that wish to be cured of their own autism. They are self advocates all the same. Even if they might not be sharing the sentiment of the “majority.”

I’ll love and respect my son and be very proud of his efforts no matter which approach he takes.

However, the honest truth is… and it’s kind of hard for me to admit is… I sort of hope that he doesn’t get into the whole thing at all.

That’s not to say that I’ll be disappointed if he does. It would be pretty awesome if he does because I think he can do a lot to improve things.

But I kind of look at it like how we shelter our kids from the 6 o’clock news. Because they don’t need to know about the wars, the murders and the state of our economy. They are happy. Carefree. The world reaches as far as their furthest friend’s house down the street and the worst thing that could happen is that they drop their ice cream cone in the middle of summer.

A self advocate (or even a parent of a child with special needs for that matter) that lives their own struggles, battles and daily disappointments and achievements will have enough in their lives to keep them both busy and content too, depending on how that day goes. For most people, that’s more than enough.

The advocacy world seems pretty great at first, getting positive feedback and support and reaching more and more people with each day’s effort you put forth. But at some point, it changes. You start reaching haters, who “come after you” where ever you may be sharing your thoughts. You get people who don’t just disagree but disagree via attacks and threats. You get people who expect more from you whether it be more effort or more time.

The best advocates are the ones that can deal with these things either by tackling them head on, rising above them or by simply paying no attention and doing what they do regardless.

But it’s taxing. It can wear you down and make you tired.

And at some point, invariably, you start to wonder…. what’s the point?

Do I hope that, should he become a self advocate, that he’ll have the strength and wisdom to over come these hurdles? Of course! I hope I can be strong enough to help him be ready should that time come or to be there for him at that time. I hope even more that he can be a self advocate and not need to experience those hurdles at all.

But the honest to goodness truth is, I would kind of rather him just not need to get to that point.

I’m one of those parents who, probably blindly and even wrongly, wants to shelter his kids from the evils of the world. To not ever have to hurt. To never know what terrible stuff is really happening out there.

But they will. One day, many days… they’ll be made all too painfully aware.

And avoiding the advocacy world won’t stop that. But it will help him to avoid extra hardships. Some extra hurdles that he need not worry about.

Not much would make me more proud than seeing him pick up a metaphorical sign (or a real one for that matter) and fight for himself and others like him, for what ever reasons and in what ever manner he chooses. I believe that he would inspire many and do great things.

But I’d also be quite happy and every bit still just as proud to see him go about his life, focused on what matters most to him, what ever that may be.

Because in the end, that’s what this is all about. Being accepting of what others do, even if it’s not what we did, or what we want them to do. To let them be their own person, whether it’s some other advocate or someone that refuses to be an advocate.

Because if my own advocacy is to mean anything, if it’s to have any value at all, than it has to start with me.

That means having my own hopes and dreams, even hopes and dreams for those that I love, and having the understanding and respect to accept that not only do they not have to fulfill those hopes and dreams of mine but that I will be every bit as happy and proud of of them for having their own hopes and dreams.

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The Right Diet in Autism

By on January 17, 2013 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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Explaining death? Easy. Explaining not existing before life? No so much.

By on January 9, 2013 in Autism, Parenting

brothersMy boys, Cameron (7 with autism) and Tyler (5 without autism) often have conversations about when they were babies. They’re obsessed with talking about what they did as babies or what babies do and at what age they started doing things.

This morning, we were talking about an old television show that we all used to watch when they were babies and the strangest thing happened… Cameron was convinced nothing had happened before Tyler was born. In his mind, he was always and will always be 2 years older than Tyler and therefore he could not have been around at all until Tyler was born so that he could be 2 years older.

It’s a weird one to wrap your head around but in a weird way, from his point of view, I sort of get it. He relates almost everything in his life to how old he and his brother are. Because he’s 2 years older, everything he does is at a higher level or done sooner. But always with his younger brother.

So when I tell him that he was 1 and we would snuggle on the couch to watch television, he asks where Tyler was.

When I explain to him that Tyler wasn’t here, he wasn’t born yet, he didn’t exist yet… I get a chill from the emptiness in Cameron’s eyes as he looks at me like I had just explained quantum mechanics to him.

He doesn’t understand it at all.

Now death? Death he gets. You’re here… and then you’re not. You stop existing. You go to heaven, you go to sleep forever, you just blink out… what ever. I don’t think he’s given it much thought but he understands that once you’re dead, you’re gone.

But to not exist before you, well, exist, is an incredibly difficult concept to digest. How can that happen?

I think it’s especially difficult in that they’re 2 years apart, making it impossible for Cameron to remember life without Tyler.

It’s not like a quick birds and the bees talk can fix that either. Because in his mind, Tyler was and always will be there. Whether he’s satisfied with “he was still in mommy’s tummy” or not comes and goes but for the most part, I don’t think I can ever convince him that we did things before Tyler ever existed.

The scientific, logical side of me wishes that I could explain it better or help him to grasp it better or even, which is wrong of me, that he could be smarter so that he’d get it. I know he will one day, 7 is still young but hey, we wall want a Doogie Howser for a child.

But the more emotional, sentimental part of me is quite happy with him thinking of his brother as always being there. They’ve always been together and hopefully always will be. To him, there is no life without his little brother and I’m quite fine with that.

If Tyler had to be -2 when Cameron was born, then so be it. So long as they’re in each other’s lives.

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Autism: An Informative Study/Guide

By on January 6, 2013 in Autism

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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The start of something finished

By on January 1, 2013 in Autism

Well, 2012 really sucked for the world of autism. Between 50 cent and his dumbass remarks on twitter, doctors placing a lower value on an autistic life, Jenny McCarthy calling autism moms “victims” if they aren’t trying to find a cure and what has to be the absolute worst, the media attempting to find a correlation between the Sandy Hook shooter and Aspergers.

Even for me personally, it really sucked as my wife decided we need to get a divorce… just before Christmas.

The good news? The past is the past. 2012 no longer exists.

This is 2013 and things are going to change.

Ignorance is being forced to apologize, the only moms that are victims are the ones that believe McCarthy’s stupidity. And the media were falling all over themselves with articles about how there is no connection between autism and violence.

As for Paul Corby and his heart transplant… I sincerely hope that the doctors received a good firm slap in the face and changed their minds. But I haven’t heard anything.

The autism community is getting the message out there. People are talking and when they’re wrong, there’s someone there to correct them.

Autism is not something to be feared, laughed at or used as a way to guilt moms into doing what you want them to do.

Not the media, celebrities, lynch mobs or even divorce can stop the wave that is heading towards governments, communities and audiences everywhere.

It’s a wave of truth, understanding, positivity and love that is a much needed set of emotions in this ever increasingly dark world.

It’s so easy to find the wrong information, to spread the wrong information, to be a hater and to ignore what you don’t want to hear.

But a force, such as the autism community is becoming, can’t be ignored and it can over come any misinformation that the media or celebrities can fling no matter how wide their audience is. In fact, the larger the audience, the more likely the backlash.

2013Don’t let up though. Don’t coast that wave.

Rise up out of your seat and correct those people that are getting it all wrong. Write and phone those media outlets, those celebrities, the government and anyone else that isn’t getting it right.

Shut down the haters, force the ignorers to listen and don’t give ignorance a free pass.

A lot went wrong in 2012 but a lot went right too. And I’m proud of most of the aftermath.

But more can be done. More can be achieved. More people can be reached. More that is broken can be fixed.

2013 might not be the end of the story but after what I’ve seen in 2012, I can see the start of the finish on the horizon.

People will accept all differences.

In the world around them, themselves, in our loved ones, in ourselves.

They’ll have to. Because we won’t stop.

And we’re just getting started.

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