Monthly Archives: December 2011

Stirring Up a Hornet’s Nest: Free Advice and the Vaccine Controversy

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It was inevitable. You can’t blog about autism and not end up discussing the causes of autism at some point.

I really wasn’t going to enter the debate. It has all been said. By folks a lot more knowledgable on the subject than myself. So, I really wasn’t planning to talk about it.

Except for the umpteen-zillionth well-meaning soul who suggested to me that my son’s ASD condition was caused solely by a vaccine. Up until that one individual, I was tolerating it well. Apparently, umpteen-zillion is one too many.

Do not misunderstand me. I am not one of those people who believe that there is no vaccine/autism connection. I do not believe in the concept of a “vaccine cult”. I have read and researched the subject. And I think that the case is most definitely not closed with regard to vaccines and autism. So, no, I don’t think you guys are crazy one bit. (Read Fourteen Studies, if you aren’t suspicious at all.)

My son has a pediatrician, a speech therapist, an occupational therapist, a physical therapist, and an infant child development specialist. He also has a DAN doctor. We haven’t abided by every suggested course of therapy he offers, but we have implemented several of them. So we like to think of ourselves as open-minded, while not getting suckered into every quack-cure available. Our approach to treating our son is that he is going to get both conventional and some unconventional treatment. That way, we won’t wonder one day if something could have helped that we didn’t explore.

But let me tell you about my grandfather. He would have been 102 years old this year. This, of course, means that he would never have been diagnosed with ASD, and it also means he wasn’t administered the current vaccination schedule as a child.

My grandfather was an intelligent man. He worked as a warehouse superintendent for a large paper mill. Being a warehouse manager is a little like being a librarian - except on a larger scale. Things can get out of control inventory-wise, and my grandfather was well-known for being able to organize for optimum efficiency — and doing it with such precision that it didn’t earn him fans. Making and keeping friends was simply not his strong suit. He often said just the wrong thing. My grandmother adored him, but everyone knew he wasn’t an easy man to live with. He was very good with small children, always seeming to understand just how to talk to them. I adored him when I was little, and he could do no wrong in my eyes. My father also remembers his gentleness and kindness in his own early years.

But, as I grew older, I realized that he wasn’t the friendliest guy to everyone else. I remember him opening a present on Christmas and asking point-blank, “What did you get me this for?” He then made a 30-minute drive into town the next day to leave it on our doorstep to return it. He was curt with salespeople and repairmen, and always seemed fixated on whatever was agitating him at the moment. It was impossible for my grandmother to get a/c installed (in Florida) for 20 years because he was worried about who should do the installation and was “researching” it. He also kept detailed notebooks about every set of winning Lotto numbers and was in the process of methodically working out “the system” he believed controlled it. This man who found conversation difficult, socializing impossible, and was obsessive about details and numbers would, without doubt, have been diagnosed with Asperger’s today.

There are other family members who, though they have much greater social functioning, have their own quirks. My father (who, interestingly, did not talk until after the age of 3), a highly intelligent man and an attorney, is one of the first people to tell you about his social peculiarities. He has good friends who adore him, and almost everyone likes him as he is what is known as “a character”. But he can be an odd duck and accepts it with good humor. Bright lights annoy him, and he finds background noise and sudden loud noises intolerable. Though he loves his grandchildren, he never leaves without mentioning how very loud an experience is visiting my home. He is rarely insulted and often fails to notice subtle commentary directed at him. And if you try to take a picture of the man, good luck. Almost every photo I have of him, he is looking away.

According to my father, even my great-grandfather had some quirks. He remembers hearing stories by local old folks about how my great-grandfather ran his business. When he reached his quota for the day, he closed up shop and went home! A true numbers guy.

I, too, have some quirks. I have been a ridiculously picky eater all of my life. Any piece of meat not perfectly lean, thoroughly cooked, and divested of its skin, gristle, and bone makes me gag. I also abhor any kind of textural changes to food, especially fruit, and I get upset when my bread gets the least bit damp. I am quite sensitive to sunlight and smells - which caused me to yak for the duration of both of my pregnancies. When not concentrating on it, I often have difficulty maintaining eye contact in extended conversation, and can get quite agitated at background noise myself - almost to the point of anger and a desire to escape. I have had a series of somewhat obsessive hobbies and interests through the years that I have eventually abandoned for the next new thing. I also inherited our family’s legendary love for travel (even mentioned by ancestors)- a characteristic I have only recently learned is often found in persons with Asperger’s. Apparently, many Aspies enjoy people watching in other cultures- presumably seeking to sort out the perplexing social nature of neurotypicals.

While both my father and I are, clearly, high functioning in terms of social skills and verbal ability (he an attorney, myself a teacher), we know we lean a bit into that spectrum as well. Combined with two confirmed relatives with autism and now my soon-to-be-formally-diagnosed son, my family is eaten up with ASD.

The thing is, while three of us were vaccinated using the current protocol, the adults were not. Certainly not my would-have-been-102-year-old grandfather. Yet we are all to some degree on this spectrum. So, I have a VERY hard time reconciling the theory that all of these cases of ASD are vaccine-related. My best guess is that there is some genetic tendency to spectrum disorders and that there is some environmental trigger that is responsible for the current rise and severity of ASD children.

Clearly, ASD in some form has always existed. Just look at the number of historical figures and geniuses that were late-talkers and socially awkward - while still putting forth world-renowned works of art, literature, music, and scientific advances. I believe ASD has always been and always will be. Recent brain studies of ASD spectrum people show marked differences in functioning. Since most of the brain is formed before birth, I don’t believe this can be attributed solely to vaccination.

What I don’t understand is why we must take black or white stances on the issue of the causes of autism. Search the internet on this subject and you will find either militant conspiracy theorists or condescending medical professionals. Did it never occur to anyone that little in medicine or the human mind is absolute? And why is it so hard to admit that we still know so little about ASD? It is as if the government is terrified of admitting that sometimes good medicine can have bad side effects and anti-western medicine folks are terrified of admitting that, just maybe, some of it is simply in the DNA. I realize that there are many who also think the truth lies somewhere in the middle, but, unfortunately, they aren’t the ones shouting from the rooftops, nor are they the ones I will inevitably bump into in the grocery store.

I don’t know the answer.

What I do know is that I worry I will lose my temper with the next person who laments that my child received vaccines. I get frustrated every time someone tells me that DAN treatment will completely cure my son. And I’m tired of being treated as though I’m stupid because I don’t buy the “case closed” argument that says autism is caused by pure genetic chance. The truth is WE DON’T KNOW. We are getting better ideas. And it is entirely possible that we will ultimately discover it is caused by something altogether different.

But I do believe we will find the answer. With one in 91 children affected by autism spectrum disorders, this country will inevitably wake up to this growing nightmare. Economically, we can’t afford not to. These children are young now, but one day they will be grown and many will require living assistance. That will affect every taxpayer in the U.S.

In the meantime, well-intentioned people should consider dispensing with absolute certainties and free advice - especially if they are not personally affected by autism. I assure you that, yes, ASD parents have heard it all. I don’t know any one of us who hasn’t obsessively searched the internet for any and all therapies and information. We shouldn’t have to defend what courses of treatment we have chosen to pursue for our children, though we might want to discuss how it is going. We have enough problems struggling over the right thing to do without worrying about other people’s good opinions. And even when we have decided, we still second guess ourselves and obsess. Most people wouldn’t dream of interrogating a cancer patient about her treatment choices. It would be nice if they wouldn’t do the same to parents of autistic children.

What we sure could use are hugs, friendship, and a genuine interest in our child and families. Invitations to child-free get togethers, movies, or a run for a mani-pedi. What special-needs parents really need is support, not suggestions (unless asked, of course).

That’s something that all of our endless hours of searching, reading, and learning can’t provide — the truly needed benefit of simply spending time with a good friend and having someone take care of us, even for just a few minutes.

This guy said it best:

“When a friend is in trouble, don’t annoy him by asking if there is anything you can do. Think up something appropriate and do it.”
- Edgar Watson Howe

(Exiting, looking around nervously to see if someone is going to throw something at me and stepping down off my soapbox…) :)

If you enjoyed this post, you might like (language alert!): Jillsmo’s “Autism and Vaccines: My Opinion”.

Book Review: Early Intervention Games

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This is one of the first books I purchased after realizing that my son was on the spectrum. Being a librarian, researching book buys is something I do every day, and I applied myself to finding helpful autism books with gusto. I was looking for something that would give us a list of suggested play therapy activities that we could pull off at home and was hoping that my mother-in-law would get into the spirit and do some of these with him as well. She didn’t, but that’s not really the point, now is it? ;)

I found Early Intervention Games by Barbara Sher. Sher is an occupational therapist specializing in pediatrics. She has written a number of books designed to help teach skills to autistic children. This one is excellent.

The first two chapters are an explanation of the sensory processing issues that impact autistic and SPD kids. She explains the goals of the games presented in the book and specifically how they will help the child. I like her style and tone – informative enough to be useful to a range of knowledge levels on the subject and conversational enough to remain friendly and non-condescending.

The following chapters are broken down into games specifically targeting the following areas: social gross motor games, social fine motor games, and water games. Following these chapters is a useful appendix of games indexed by sensory system or skill stimulated.

The Games are laid out a little like a teacher’s lesson plan, which makes them quite easy to implement. Each Game includes the following: title, goals, materials, setup, directions, variations, what is being learned, and modifications. What I found especially helpful is that Sher has included suggestions for what to do if a child is not responding in the manner intended that might help to make the activity more successful.

Early Intervention Games is a great resource for teachers, therapists, and families seeking to develop social and motor skills in very young children.

You can also visit Barbara Sher’s website www.gameslady.com for more information and to see videos of some of the games being implemented.

Could I Get Some Psychological Dramamine Here, Please?

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When I first realized that my son was on the spectrum, my good friend Christy, who has a special-needs child, took me out to lunch. And she shared a lot of insight into what Sean (my husband) and I were facing in dealing with developmental delays in one’s child. She talked about people staring, sadness, worry, IEPs, the ins and outs of our local school system, which therapists were excellent, which doctors were not, how to find a dentist who deals with special-needs children, and a lot more. And then she looked me straight in the eye and stated the biggest truth of all, “It’s about ups and downs. It’s a roller coaster. And it seems to never stop.”

At the time, I thought I understood what she meant. But that, of course, was before Callum began therapy. That was before diagnostics, parent interviews, Early Steps, developmental pediatricians, and yearly developmental assessments. That was before we experienced words gained and then lost. And then found again. It was before Callum showed progress in putting together a puzzle. And before he subsequently refused to touch one again. It was before he could point when asked to his daddy’s nose and eyes. And before he stared blankly when asked to do so again. It was before a lot of days and weeks when I have been convinced that things were going well. And before the following days and weeks when despair threatened.

I have now been on that roller coaster for a year, and I have a much better idea of what Christy meant. This particular roller coaster has lighting quick dips and turns. I find myself looking around at folks who seem to be handling the ride better than me. Special-needs moms who have actually used a bottle of nail polish in the past year and don’t have two-inch roots. Moms who probably don’t get fussed at by the speech therapist because they are doing a better job at home working on their child’s abysmal joint attention. Moms whose houses are clean and whose pastors have actually seen them more in church than in the grocery store.

I find myself thinking about the highs and lows as I lie here at 5 a.m., having been awake with the boy since midnight. I have stewed about it for hours, feeling it a lot more in the witching hours of his sleep irregularities. But then I look over, hearing Callum’s voice. And I watch him in the light from the T.V. dancing across his face as he points to his eye and awkwardly says, “Eyeee.” He touches his nose and says, “Nnnnose”. And smiles at me and curls in to snuggle.

And the coaster begins to climb again. I can see the climbs and drops behind me as I ascend again. But Callum reaches to pull my fingers into his little hand. And away we go.

Cool Apps for Autism: Color Dots

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This is another really nifty little app that does one thing very well. After using the Touch Trainer app to teach our son how to interact with a touch screen, this is the app we moved to next. It starts with one little dot moving around the screen. The child is supposed to pop the dot by touching it with an index finger. Each screen then progresses to include more moving dots. It’s really cool for encouraging little ones to use a touch screen properly, and it also is great for eye-hand coordination. It can also be used to practice turn taking and joint attention. Our son loves this app, and it has proven a lifesaver when out in public in a waiting situation.

I opened this app in his therapist’s waiting room one afternoon. Suddenly, I had the attention from a little boy who had been all the way across the room. Though I don’t know his diagnosis, he was clearly on the spectrum as well and non-verbal. He walked right up and began joining in with my son popping the bubbles.

This is a great little app at just 99 cents.

Reply to a Disgruntled Reader: On Person-First Language and Autism

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From a Reader:

“Because you are a teacher, you should know that children are not autistic. Children HAVE autism. The behaviors are autistic. How would you refer to a child with cancer? Surely, not canceristic.”

Dear Reader,

I read your comment and set it aside. I waited because there isn’t a correct way to respond to this. I can’t win no matter what my response is. Clearly, you are strongly of the opinion that people should place descriptions of children AFTER the noun “child”, presumably because you want to stress “child” rather than “autism”. I realize that you do not want to see children defined by a condition. I get that. I do. But I would be lying to you if I told you that I agree.

Just a few days ago, my friend Jenny, also an autism mom, made the comment that she wished people would stop using the term “children who have autism”. She thought it sounded like some dread communicable disease. You know, like “I have crabs” or something equally disconcerting. At the time, I remember thinking how funny that was – precisely because I have heard impassioned arguments to the contrary! I remember thinking that, no matter what one says these days, you offend somebody. And, clearly, I have offended you.

Abraham Lincoln once made this dry criticism of a writer: “He can compress the most words into the smallest ideas of any man I ever met.” The English teacher in me loathes wordiness. It obscures meaning, as one is too busy shoveling crap to get to the main idea. I believe that political correctness has forced us all to spend a great deal of time adding more and more words into our sentences to describe… the obvious. I don’t use vulgar slurs. And I dislike hurtfulness in all its forms. But I believe that we can rearrange the adjectives and nouns to our heart’s content – and not change a thing except to make it immensely difficult to get out a single sentence without pausing repeatedly to shift around all the words.

Our society is already quite comfortable referring to certain groups of people via description. The deaf community. Senior Citizens. Diabetics. Brunettes. Gifted children. You don’t hear many screams of outrage demanding those persons be called “groups of people who are deaf”, “Americans of advanced age”, “people with insulin resistance”, “women with brown hair”, or “kids who are much smarter than their teachers”. You simply don’t. I can rearrange all of the words into new prepositional phrases and -you know what? It won’t change a thing. Even in the autism community, people with an Asperger’s diagnosis affectionately refer to each other and themselves as “Aspies”. Search the internet, and you will find dozens of websites with funny t-shirts designed for autistics and aspies who want to proudly and amusingly claim their unique status.

For many months now, I have been likening observations of my son to having three sets of eyeglasses. We analyze his behaviors in terms of him being two years old, being autistic, and also simply being Callum. But the frustrating part is that I cannot classify any of his behaviors using just one pair of glasses. For he is all of those things. Remove one, and he ceases to be the little boy that I love. He is an autistic two-year-old boy named Callum. Converting the adjective into a prepositional phrase will not change anyone’s perception of him. Nor do I believe the argument that it will change his perception of himself.

The thing is, I am certain that there will be folks who reply in to this, passionately disagreeing. There will also be people replying in, passionately agreeing. Yet nothing conclusive will be determined. People might fight about it and spew insults. And some will want to sing “Kum Bah Yah”. But neither side will emerge the victor.

And all that drama would be a shame. Because, I promise you, promise you, my feelings for my autistic child are every bit as loving, protective, and passionate in my belief and faith in him as yours would be for your child with autism or some other reader’s child who has autism or her friend’s child battling autism. To me, and others who agree with me, they are the same child – regardless of the part of speech.

That’s why I didn’t quite know what to say to you. Because I won’t win. People will be upset. And, we have enough controversy in our community. We have divided camps over DSM classifications, vaccines, biomedical approaches to autism treatment, genetic research, etc. etc. I think it isn’t particularly helpful to any of us to insinuate that some of us are insensitive simply because we prefer the adjective lead the noun. Nor do I think that people who see it differently are idiots. I think it is a preference.

But it hurts me to think that folks with a different opinion would accuse me of insulting children. For I love each and every autistic child that I teach. And I love my child with autism. I don’t want to upset anyone, but I will inevitably upset someone.

So, that’s the best response I have to you. And it still isn’t satisfying to either one of us. But I want you to know that I mean no harm. And I wish you all the best.

Love Life, Be Brave.

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I’m learning more than I ever wanted to know these days. Lessons about isolation, humility, frustration, real fear, unconditional love, what’s important, patience, gratitude, and so very much more. But what I have really learned the most about is friendship. Friendship takes on a whole different meaning when your life is affected by ASD - or any crisis or special-needs issue that affects your child. For, no matter how much your friends love you, there are some things in life that you cannot possibly understand until you have experienced them. Please do not misunderstand me. I have dear, dear friends who have kept me sane throughout the last year of panic, paralyzing fear, occasional depression, sometimes regression, moments of joy, and my inevitable obsession with learning more about my child’s condition. (It’s even worse when you are a librarian. lol) They have tolerated me obsessing, repeating myself, forgetting to ask about their lives, and every other way I have slacked off in the friendship department over the past year. (You guys know who you are, and I love you.)

But there is a part of my heart now that even they do not have access to - that part that toddles around, smiling and flapping away, still happily oblivious to the difficulties facing him. That part of me is only accessible to those who know. That kind of friendship and sisterhood/brotherhood is intimate indeed.

I have such a friend. Her name is Christy and, though neither of us ever dreamed years ago we would find ourselves on a similar path, she is now the reason I believe in destiny - that certain people are simply meant to find one another. I believe that we both endured a summer of algebraic torture in college simply because the two little souls who were destined to affect our lives would one day be arriving.

Christy has been on this road for longer than me. Her journey raising a special-needs child began in 2001, with a CMV affected child. (Read her story.) And, though we were friends, I didn’t truly understand her pain and isolation. It wasn’t until last year that our friendship took on new meaning for us both. When I began to face that Callum was on the spectrum, I reached out to her. I sent her a message apologizing to her for all of the missed opportunities to help her and for all of the times I could have been there more. But , she already knew more than me and wisely informed me that I couldn’t possibly have known. She, with open arms, welcomed me to The Club No One Wants to Become a Member Of.

And she gave me a gift. A gift that I explain each and every time someone asks me about it. A gift that makes me cry again just writing about it. She pulled out of her purse a small box. In it, was a silver ring. It said, “Love Life”, and on the inside, “Be Brave”.

And then she stunned me. She told me that she had a matching ring. For, years earlier, she had seen the ring and knew, simply knew, that one day she would need to give it to someone else. She didn’t know who, but she had kept it for years - until I emerged as the person who needed it. I now wear that ring every day. It has become as valuable to me as my wedding band. It has become my mantra on hard days and my joy on the good ones.

Over the past few days, my readers have also taught me much about friendship and destiny. To each and every one of you who have reached out via Twitter, Facebook, Email, and this blog, thank you from the very bottom of my heart. All of you have also been placed squarely on my path in this new journey. Your words and support are no accident; they are destiny. Thank you for the open arms into which you have also welcomed me into The Club. All of you have reassured me that it’s gonna be okay.

Thank you to my dear friend Christy and all of my new dear friends in the blogosphere. You are all my heroes.

Love life. Be brave.

Callum’s Prayer (Prayer for An Autistic Child)

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Lord, I know that all autistic children are Your children and that You love them all equally. But I have only this autistic child, and I confess to loving him most of all. I want so many blessings for this child. Thank You for this gift of his life. For, though he was not the child I imagined, he is the child I cannot imagine having never had. Please, as he grows, guide him toward:

Faith - because hope is as necessary to the soul as water to the body.

Confidence - in his abilities and worth, in order to convey them to others who might not see them immediately.

Courage - to face fear, to live despite losses, and most importantly - to try.

Curiosity - about himself, others, and the sometimes confusing world around him, for that is how he will learn.

Patience - for others who may have trouble understanding his needs.

Calm - when the chaos of the world threatens to overwhelm.

Resolve - to stand up for himself and those needs, even when backing down seems easier.

Prudence - to know when to seek help and advice from others.

Interests - that he he can both immerse himself in and that can offer him an opportunity to contribute to his world.

Friends - who will love him as he his, enjoy his eccentricities, and be there in his need.

Wisdom - to understand that none of these-none of them- are the result of luck or birth, but of his own choices.

Please, Lord, when I cannot be there, send Your angels to keep my child from harm, and guide him always closer to the peace and love and light that is You.

Amen.

Cool Apps for Autism - Autism Apps

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This isn’t an app for autistic children so much as an app for parents,teachers, and therapists of autistic and other special-needs children. Quite simply, it is an app that is a searchable database of other autism apps - broken into categories such as behavior, choice-making, art, ABA, books, cause and effect, sensory, math, reading, writing, and much more. The range of apps in terms of age, skill, and level of communication is impressive. They also have featured apps by recent release for those parents in the know app-wise. A must have for autism app users and FREE.