Information for parents of disabled children

Thursday, April 29, 2010

Rubber, meet the Road. Road, . . .

A pile of Lego blocks, of assorted colours and...Image via Wikipedia
Brick Buddies is over for the year. It was a long haul getting from here to there. There is still a ways to go. Brick Buddies is our RISE Learning Center LEGO club, and it has students on both ends of the spectrum included. We weren't able to have peers without disabilities, but how awesome would that be, huh?

Extra-curricular events, clubs and teams are rare for children with disabilities. At least, they are here in Indianapolis. So when a friend came to me with a study about LEGO and its benefits to children on the spectrum, it seemed a good fit. The problems soon became apparent.

Problem One: You need Legos. Lots of them. My first source was Wal-mart. Go to your local store and fill out a simple form telling them what you're needing and why. They've funded us two years running. This year we also obtained some stimulus of our own for the club. That will keep us going for a while.

Problem Two: This one you will not believe, but staff were semi-resistant to the club. I'm speculating as to the cause, but I think it may be related to our habit of lowering our expectations for "those"kids. Lower goals not expectations. The fact is that autistic kids have an affinity for systems. Lego is a building system. It's the same reason so many like math.

Problem Three: RLC is a facility with students from both ends of the spectrum, and every disorder under the sun seems to occupy its halls. That makes for a problem I still haven't fully solved. High and low functioning students at the same event. One thing I've learned is that the kids can and will let you know where their talents lie. I can say with certainty that social skills training was accomplished.

To parents, I say: If you have time and ability to share, starting recreational groups for children with disabilities is the best way to go. Kids need these kinds of experiences. They need the opportunity for play, for conflict, for self-regulation. We all learn these things the same way, experience. The learning and mentally disabled need more experiences than the rest of us, not less. Whatever you do, keep your child in the game. Don't let them retreat from the world.
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Thursday, April 22, 2010

Book Review: The Everyday Advocate

The Everyday Advocate hit shelves this month. It's written by Areva Martin, lawyer and mom of a child on the spectrum. There are a lot of good things to say about the number of voices out there aimed at parents, and there are a lot of bad. This book contains mainly good information. As with most of these books, it seems aimed toward those on the high end of the spectrum, or those with the most abilities. There is education to be found here, though, for any parent with a child on the spectrum.

If you have a child with a disability, you are their advocate.  You became their advocate on the day they were born. Many, many parents hesitate to take up that role because they feel they can't. Mrs. Martin captures in her first chapters that basic fact that you can, anyone can. She also lays out the map for getting there.

She devotes a lot of time to inclusion, and that's great. However, many parents with low functioning children find it easy to get discouraged when inclusion is the focus of the discussion. Don't get me wrong. The numbers are in on this and inclusion is hands down the best possible outcome. When kids are severely autistic, it becomes impractical and difficult to implement. I am not of the school that believes separate environments when appropriate are discriminating against our children, nor am I prone to think that it promotes ignorance in the general public about autism. I think the general public is prone to ignorance all on its own. I would have like to see her focus on individuals more fully in making her recommendation. One size does not fit all.

With that one proviso, I recommend this book highly.  It's concrete and complete. It's easy to read and empowering. It's full of good information and one of the books every parent should have at the ready.
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Saturday, April 10, 2010

My One and ONLY Reply

This picture was reworked by the Fotowerkstatt...Image via Wikipedia

 Hitler didn't do it, Autism did!:
The things we'll say online and how none of themwill find a cure.

The internet is a wonderful thing. Ten seconds of pushing buttons and the whole world is connected. Lately, I've looked up a few things, maybe out of morbid curiosity, on the argument to vaccinate or not to vaccinate. OMG! In internet speak, that means "What was I thinking?"

There are camps on both side of the river, and the battles rage fiercely on. There's Generation Rescue and Age of Autism, and there are skeptics found on sites like Scienceblog. There's Jenny McCarthy beating the drum, and there is the NIH and CDC waving the flag. In between, you have serious vitriol and hyperbole. Oh, Sweet Lord, the hyperbole!

On the above mentioned Science blog, I stopped to share our story. Don't ask me why. Temporarily out of my mind, I assume. Much later, I followed a link back and found the replies. For several posts, it appeared to have degenerated into actual conversation instead of the acidic shouting of words like "strawman", "Hitler" and "Babykillers". Having come to my senses,  I've decided something. Nothing about any of this really matters, and I wanted to post my response here because some of what I said bears repeating often for both camps in this little forum war to nowhere.
I actually hadn't checked on this site in some time. There isn't enough time in the day to "lurk" on a forum. My mind reels.
" Why are the trials, tribulations and questions from those of us who had our children injured by the actual diseases more trivial than those who claimed it came from the vaccine?
What makes having the disease and suffering very real consequences not as dire as yours?"
Holy crap! When did I even suggest such a thing? That is an assumption drawn from your emotional state. This is what I mean. Having reviewed this entire thread, there is no value in any of this, and those of you having petty discussion on Dachau and Hitler and whether Jenny McCarthy is a slut or D-list actress, whichever side of the argument you rally to Vac or Non-vac, are wasting time and energy. This is a personal decision made within a family.
In free societies, it should stay that way. Removing mercury from vaccines was easy. It's done for the most part. What did it hurt? Removing Pthalates and other such chemicals? What could it hurt? Are they necessary in the product? Usually not. Does any of this matter? Not a bit. It may help and it may not. Like recycling, should we do it? Again, probably.
My family, like many others, still gets up in the morning struggling with our personal choices and circumstances. Nothing said here changes any of that. Remove morality and emotion from the equation for a second, all of you. Is there a problem and is it growing?
My suspicion is that we have a genetic propensity meeting modern day diet, chemicals, etc. Does that change my son's life? Not one bit. What changes his life? Hard work, education and repetition of tasks, research (lots of it), and keeping things as simple as possible. Our bottom line is that parents have the right to parent their children and decide their medical care. Period.
We can spread balanced information. That helps. We can educate parents on the issues facing their child now. That helps. We can work to fund research into every aspect of autism and developmental disorder. That helps. But the stuff above, that doesn't help. It only hurts the hurting and frustrates the already frustrated. I'm speaking to all of you. Age of Autism included. Put your energies into the things that help, and put comments and ugliness like all this in the garbage where it truly belongs.
My experience is that there is a middle ground between name calling and silence. It's called discourse. As a society, we should all take a look at the mark we leave on the world. When we want to solve the problem, it will get solved. In the meantime, let's stop alienating everyone around us. To Quote last night's episode of Stargate Universe, Divided, "Remember, we have to live with these people tomorrow".  This is my one and only reply. Acting like children won't help our children.
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Monday, April 5, 2010

We All Have Autism.

In the very beginning, it was important; no, imperative, to me that the other two kids not lose their childhood to this disorder. I saw it as the enemy, and still do sometimes. No way would it ruin things for everyone. They would get to be children for as long as they were children.

A few years in, I had started to calm down a bit, but the fruits of my labor were beginning to show. When D would melt down, the other kids complained, whined, threw fits all the way home. Family outings became segregated. Worse yet, I didn't like the attitudes they harbored against their brother. They resented that he was different, that he interrupted their fun. They didn't want a sibling with autism.

I had been parenting all wrong, and it was long past time I pulled my head out of my behind and did something. So I got them all together in one room and said, "Newsflash! We all have autism." That got their attention.

I'd been teaching "every man for himself" when I wanted to teach "all for one and one for all".  Families stick together. Families shoulder each others' burdens. They work together as much as they play together, but I'd been too concerned about preserving their carefree childhood.

There are mental health professionals out there clucking their tongues at me right now. I know the common wisdom, but I wanted my children to learn uncommon wisdom. We never wanted our son's siblings to carry the load, but neither did we want them to be one's to leave it to someone else either. We wanted them to be the kids who included the autistic kid on the playground, not the ones running away from him. How will they ever learn compassion and loyalty if we put their comfort first? We seldom learn wisdom in comfort.

The Result:  Since our family changed our motto, the kids are closer. They care for D like a true sibling, and an unexpected thing happened. Our oldest, I realized, has many disabled and learning disabled friends. He's truly including everyone he can, and that's so much better than a carefree youth. When all is said and done, I'd rather be able to say our kids are empathetic, caring individuals who work for the greater good, than to simply be able to say "well, they had fun".

There is no fear in love; but perfect love casteth out fear.
 1 John iv. 18.

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Thursday, April 1, 2010

Socially Acceptable

The Indiana Resource Center for Autism has some amazing trainings. I was lucky enough to attend one just in time for our Case Conference Committee. As we all know, autism challenges a child's social skills. Schools, with limited time and resources, assign value to social skills training. As any parent will tell you that equals 15 minutes of social skills training every two weeks. Right?

There is a study out there suggesting 30 hours a week isn't enough! If you work extensively with autism, you know that every moment of the day has some opportunity for social skills training. 30 hours shouldn't be that hard to reach- if we're creative. Teachable moments occur all the time.

Another surprising thing I learned was that teacher gender may matter. This related to my own experience in the classroom. When teaching kids to be socially adept and maneuver into a conversation, I would often teach them to interrupt me politely with a hand on my arm. How girly is that!  Obviously, I need a new strategy for the guys.

The trainings were led by IRCA staff such as Dr. Cathy Pratt and Scott Bellini. If you get a chance to go, I say jump at it. April 9th, Dr. Bellini is giving another conference on video self-modeling. This is a method we intend to try with our son, showing him how he looks successfully completing a task or behavior. The study on video self-modeling, Increasing Social Engagement in Young Children with Autism Spectrum Disorders using Video Self-Modeling, has been published in School Psychology Review.
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Outrunning Autism: Children's Health News - The Hidden Dangers of Phthalates

Outrunning Autism: Children's Health News - The Hidden Dangers of Phthalates

TRUE! All True.

Tax Dollars Circle Drain- More at Eleven

The Governor has done it again. He has found more ways to piss away the tax payers money. Fiscal responsibility never looked so frivolous as it does in the lawsuit against health care. The constitutional precedent is there and the attorney general, Greg Zoeller, chooses to ignore that precedent in the name of politics.

According to eyewitness news, Indiana joined thirteen foolhardy states in an expensive attempt to overturn legislation they don't like. "I believe that it's in the best interest of all and that includes those people who support the new legislation that we raise the constitutional questions that are apparent to the United States Supreme Court," said Zoeller; this, from coverage of the event. It is in all our best interests to engage the state's funds in a legal battle that will not be won. OOOkay. Is there any other response, but to shake our heads in wonder and amazement?

Meanwhile back on the farm, Indiana schools had an average shortfall of 3 million per district. That was the average. Job after job has gone on the chopping block in area schools. Industry is moving out of our state, and the governor issues marching orders to engage in frivolous spending. Indiana is no longer the republican bastion it once was, and this lack of fiscal common sense seems poorly judged for our man, Mitch.

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