Autism and Floorplay with Your Kids

Article first published as Autism and Floor Play with Your Kids on Technorati.
One of the interesting behaviors that both my sons tend to exhibit that is unique to most children with autism is their relative willingness to socialize. My oldest child had a friend at his last school, and likes to play with other kids he knows. He loved playing with his cousins, as did my youngest son. Yet this is unique to children on the spectrum, as most find it difficult to socialize, even with their parents.

I hadn't thought much about it, because in our home we get down on the floor and play quite a bit with our kids. I remember when my oldest was a lot younger (shortly after he was diagnosed), he would often lose interest when we played. Now he can't wait, often tackling me when I sit down, just to right on my back. The difference is that I would play a lot with him, trying to get him to give me eye contact. I would sit and tickle him, praise him for giving eye contact, and tickle him again. We went the rounds quite a bit, and he still loves to be tickled.

Apparently, according to a study published in the Journal of the American Academy of Child & Adolescent Psychiatry, Children who received the Early Start Denver Model therapy saw a significant change in their brain functions relating to normal social behavior, normalizing those functions to coincide with the control group. The study was well done, and fascinating to read.

Of course, this begs the question: what is the Early Start Denver Model, and what does it have to do with playing with your kids? Well, the Denver Model is a version of Applied Behavioral Analysis (ABA) therapy that takes the therapy to the floor with the child. Parents can quickly learn to use this method to help their children, and it all comes from integrating play with the therapy. I'm sure there is a lot more that goes along with it, but the core is teaching while playing. Early Start Denver Model is specifically designed for those children between the ages of 12 and 48 months to help them while their brain is developing.

So it seems that while I was playing with my son, I was implementing, at least in a rudimentary form, the Denver Model to help his development. From that period he gained some pretty impressive skills for his age at the time, and they have helped him as he goes through school now.

How did I get the idea for playing with the kids all the time in order to reinforce behavior? Well, my parents did the same thing while we were younger. I knew what to focus on because the psychologist that evaluated our oldest had told us, "work on his eye contact". So that's what we did, and apparently it worked.

Special Needs and the Magic Kingdom

Article first published as Special Needs and the Magic Kingdom on Technorati.

Several parents have talked about their experiences taking their child with autism to Disneyland. Some parents have shared their experiences and advice which I have always found helpful. In fact, I've posted about this previously myself. But I really wanted to share my recent experience.

Last weekend we went to Disneyland and California Adventures with extended family. On the last day for the extended family, we went to Cars Land. While their kids were in (a very long) line to have their pictures taken with Lightning McQueen, we went around the corner from the Cozy Cone to have our son's picture taken with Red, the fire engine.

While in line, witnessed something amazing that sort of outlines why we go to Disneyland every year. A young lady with special needs, all dressed up, went right up to red and gave him a hug (at least as best as she could). The character assistant had a huge smile, the cameraman was snapping pictures like crazy. I started to tear up. She took a good 5 minutes or so to interact with Red, and Red responded back (I'm still not sure how they do that, I think their might be someone inside the vehicles). It was awesome.

Disney, with their theme parks, cast members, hotels, vacations, etc. seem to have this policy that every experience with Disney needs to be magical for everyone. It doesn't matter who you are or what your abilities are, they treat everyone as special guests. And it's infectious, as many guests try to keep that same tenor that makes Disneyland the happiest place on Earth.

My own experience comes from hearing my sons' excited squeals as we go from place to place. They both dance for joy, run to the characters they love so well from countless shorts, and give each one a hug. And the characters even play with them! It's heartwarming to know there is always one place they can just be themselves, and enjoy such a crowded, public place.

Promising Research in Autism: But Far From Cure

Article first published as Promising Research in Autism: But Far From Cure on Technorati.
The journal Science has an article entitled Shared Synaptic Pathophysiology in Syndromic and Nonsyndromic Rodent Models of Autism, which found a common bond between Fragile X and autism. And what's more, they were able to "reverse" the autism-like symptoms, in mice. The article that drew my attention to this research was Neuronal Dysfunction Found In Autism can be Reversed, posted online at the Examiner. Imagine my surprise, and excitement, when I read that an effective cure for autism had been found!

Of course, I checked my excitement and started to read the article. It seems that scientists have managed to duplicate the genetic effect that causes autism-like behaviors in mice with Fragile X Syndrome in mice with "autism". Basically, they introduced an antibiotic (an environmental stimulus), which caused the neuroligin-3 gene to turn off. This gene is instrumental in developing glutamate receptors and neural pathways. Without this gene, the brain just connects willy-nilly, and as a result causes autism-like symptoms.

The research is ground-breaking, because they found a way to turn the gene off, and subsequently back on. That means, should this gene be defective in persons with autism, it's possible in the future to treat their autism with drugs. It could be possible, perhaps in the not too distant future, to have children with autism retain their minds but be able to engage socially.

So why curb my excitement, if this is such a great breakthrough? There are a few things that are assumed by the news article (though not by the scientists):

• Autism is caused by the neuroligin-3 gene: This is quite an assumption, since there are now over 200 genes found to be linked in some way to some form of autism. Still, as it is confirmed in those with Fragile X Syndrome, this is excellent news.
• Non-environmental disruption of neuroligin-3 can be reversed: This will most likely be the next phase of the research. Biologists and neurologists will need to check to see if, when this gene is already turned off naturally, it can be turned back on using environmental drugs.
• There is a biological consistency between humans and mice: As with most biological experimentation, this research was done on mice. The question now is, can it be reproduced in more complex mammals, such as humans? There is a lot of difference between a mouse and a little boy.

Of course, I'm not discouraged at all. I think any research that produces results such as these are fabulous. Clinical vetting still needs to be done, lots of research to test the theory, and of course there needs to be some test subjects and clinical trials, but all in all I think this is great news. Perhaps one day we will be able to have a way to treat autism's worst symptoms while unlocking the brilliant minds that are just waiting for us.

"Junk" DNA: Could This Be the Unified Theory for Autism?

Article first published as "Junk" DNA: Could This Be the Unified Theory for Autism? on Technorati.
The New York Times has a great article on research done on "Junk" DNA, or DNA sequences that are not genes. The article talks about the part of DNA that are not instructions for building proteins was was previously considered unnecessary appears to be active (at least 80% of it), and needed. This part of the genetic code acts as switches that determine how genes are interpreted, which are used, and ultimately can determine which cell becomes, say, "a liver cell or a neuron".

What's really interesting about these switches is how they are activated. It seems that environmental factors can change which switch is active, which is used, and how the body can be (or not be) prepared for illness. There have been at least 6 articles published in the journal Nature about these switches, and they have already have found links between them and diseases like multiple sclerosis, lupus, rheumatoid arthritis, Crohn's disease, and celiac disease (see links in the NYT article), and can even dictate a person's height.

After reading this article, I couldn't help but wonder: how do these switches relate to autism? The debate into causes of autism have been raging (and I'm one of the ragers, I know), and has divided a lot of research funding amongst many different theories. Right or wrong, it has been frustrating for parents, advocates, and politicians as everyone starts taking sides.

But when I hear that environmental changes can affect how switches are turned on and off, and I think about how much genetic evidence seems to be there for autism (in that certain genes need to be dominant, certain mutations need to happen, etc.), and tie that all into the various diseases already associated with these switches, I can't help but wonder if there is a direct correlation between many of the claims of autism causes and our "junk" DNA.

Now, please note, this is purely my speculation, but what if these switches are responsible for autism, or at least responsible for when those mutated genes that are associated with autism are activated? It would explain any environmental relationship with autism, it would also explain any autoimmune conditions that cause autism, and a lot of the other conditions that seem to be related to autism. And once we know the cause, we know where to look for treatment.

Now, again, this is purely speculation on my part, and there is no research to back this up. Please take it with a grain of salt until someone does research in this area. But it's exciting to me to think we are at the cusp of something so significant that could mean so much to us. Perhaps it is the answer, perhaps not. Still, I can't help but hope for the breakthrough that brings us all together under the same umbrella. Because once that happens, our internal squabbles can be put behind us and we can spend more resources on what's important: our children.

Selling an Idea: Autoimmunity and Autism is the New Snake Oil

Article first published as Selling an Idea: Autoimmunity and Autism is the New Snake Oil on Technorati.
On Saturday, the New York Times ran an article in their Opinion column with the following title: An Immune Disorder at the Root of Autism. The article made a very clear, glaring assumption: All children with autism are subject to a self-destructive immune system, which is caused by a lack of parasites in the body. By the end of the article, the author (not a doctor, by the way), claims that by introducing whipworm into the system in order to treat autism in children. Never mind the dangers of such a decision, the illness it could cause, it's all because we don't balance our immune system by being too clean.

With such a wild assumption, particularly with the recent finds in Iceland regarding genetic mutation likely in aging fathers, it needed to be checked. According to the author, research has been done to prove this theory. From what I could read from doing a quick Google Scholar search, all studies revolving around the connection between autism and immune systems were inconclusive, requiring a lot more research. Most of the research out there is sparse, and much hasn't been duplicatable in additional studies, casting doubt on the connection.

The problem is, the author, who is flogging his book, "An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Diseases", which will be available September 4th, makes claims without any substance or citations. Biologist Emily Willingham took him to task in an article that is well worth the read. She did a lot of the legwork in searching for research, sifting through the author's claims, and pointing out the glaring problems in his article.

The problem is, people are going to believe him. The same people who are determined to believe that vaccines are the root cause of autism are taking this up as "proof" that their theory is correct. Others will start giving parasitic eggs to their children, infecting them on purpose, in an effort to "cure" their autism. Children are going to get sick, if not die, from malnutrition and anemia because parents are going to panic.

I've long maintained that autism is a condition ripe for misinformation, as no one knows what causes it. As such, much like the uneducated peasants of old, snake oil salesmen can come in with their crazy ideas, sell a book or treatment, make millions, endanger children in no position to defend themselves or tell their parents they hurt, and have a following vow that they are right and anyone who doubts is a "hater". It's scary, it's frustrating, and it's wrong. The only thing that can combat such charlatans is good education, of which there are plenty, and yet many people refuse to be educated, refuse to do the research, and therefore give up their responsibility as parents to someone else.

Now, I'm all for new theories, and new research. But to make an explicit claim that ALL instances of autism are caused by anything has to be backed up by a significant amount of research before I'll take it seriously. New research is just that, new, and assumptions are made based on the results of the study and the biases of the researchers. Additional studies need to be made with the same results being found, in order to reinforce the theory or find an actual connection. Until that has been done properly, Mr. Moises Velasquez-Manoff has cast himself as a snake-oil salesman looking to generate sales of his book, and not to help children and adults on the autism spectrum.

Sir, shame on you.

Is Autism a Death Sentence?

Article first published as Is Autism a Death Sentence? on Technorati.
I don't envy doctors. They take a lot of grief from patients who are not happy about aches and pains, get drilled on all the latest advertised drugs that anyone with a television seems to think they need, and once in a while they are placed in an untenable position: They have to decide who gets to live, and who doesn't.

Recently, it was reported by ABC News and other news outlets that Paul Corby was denied the waiting-list for a heart transplant, because he has autism. He has autism, which is defined medically as a psychiatric condition, and because of the potential issues with drugs necessary, at the age of 23 he was denied the chance to wait for a heart. Why did he need one? Because his left ventricle didn't close when he was born, and his heart doesn't pump enough blood. It's a dangerous, life-threatening condition that would require a transplant. And yet, he can't have one.

I don't know of any other reasons why he was denied, what factors were weighed, or whether or not it was an attack on his autism as opposed to legitimate reasons, so I can't comment on the decision itself. But It does beg the question: should autism restrict anyone medically? Should someone with autism be excluded from blood transfusions, organ transplants, or revolutionary new procedures? We all know that organs are rare, and there are long waiting lists for organ transplants. Should someone without autism be considered in front of someone with autism?

It's so easy to see someone with autism or another physical disorder and see only that disorder. You don't see that children with autism can also be children with the flu, children with chicken pox, children with measles (yes, if you don't get them vaccinated), and children with a cold. Our kids get sick, and often without us knowing right away because they can't explain how they feel. It is frustrating for parents enough when you know they will be out of school for a couple days. I can only imagine what Paul's poor mother is feeling, knowing her son's life isn't worth the same as others on the waiting list, just because her son has autism.

The media has been reporting on this story for days, and I'm sure they will talk to every expert out there, get plenty of public opinions on the matter, and even find some celebrity to make a comment on the situation, on the outside. My heart goes out to the doctor that made the decision: that unpopular, inflammatory decision that could be very damaging to a career, should anyone find out the doctor's name. It's a responsibility that I would never be able to manage, personally. I'm really glad that I'm not a doctor.

Autism's No Joke

Article first published as Autism's No Joke on Technorati.

Monday night, July 2nd, 2012, prominent rapper 50 Cent received a tweet from one of his 8 million + followers threatening his life if he didn't release a new album. It was a stupid tweet, and one that would have prompted an FBI investigation. But instead of taking an official method of dealing with this one follower, 50 Cent replied with the following:

"yeah just saw your picture fool you look autistic."
"I dont want no special ed kids on my time line follow some body else"

Instead of taking the high road, he shot back by using a very vulnerable portion of the population as a weapon, much as the"R" word was used during the 80's and 90's. The comments were unbelievable, and prompted quite the outcry against the rapper. The best that I have seen was from < href="http://missjia.com/2012/07/05/holly-robinsonpeete-amused-50-cents-autism-jokes/">Holly Robinson Peete, where she called on 50 Cent to remove the offending comments, at the very least.

I'm not a follower of rap music by any means. I have a very eclectic collection of music, but rap is one thing I never really got into. I don't own, or have I ever wanted to own any music by 50 Cent, and now I'm less inclined to make any such purchases in future.

Why do I feel so strongly? Because while growing up my brother, who was never diagnosed with autism (they didn't do that sort of thing in the 70's and 80's) was often the outcast. He was even used as a punishment on the bus while going to Junior High (If you were a problem child, you had to sit next to my brother). It was frustrating, and I often got into disagreements with the bus driver (and did a lot of walking home) over this very thing.

People with autism are just like everyone else. They have feelings, they care about what others think of them. They want to have friends, socialize, and be "normal". They don't need prominent celebrities alienating them in a public forum, even if it's in response to inappropriate behavior.

Some have called on 50 Cent to apologize. Others have called for a boycott. Personally, a boycott for me wouldn't mean anything, as I never have and probably never will want to purchase his music anyway. But I do think something very powerful needs to be said here. Autism isn't a joke. I don't want it to be turned into another attack by kids. I don't want to see what happened to my brother happen to anyone. Ever.

50 Cent, I'm sure you don't care about what the autism community is saying about you. I'm sure you think you are safe in your record deals, fame, and fortune. Sure, you didn't make a racial slur, or attack anyone because of their sexual preference. But you did attack my two sons. And that's just not cool. Perhaps you should have thought before you wrote anything.

Addendum: 

Apparently, a lot of people have been video-taping themselves smashing 50 Cent CDs, which has caught the attention of CDSweep, a national fundraiser for Autism by using donated CDs and DVDs. They provide funds for the Autism Science Foundation (ASF), a 501(c)(3) public charity that provides funding directly to scientists and organizations conducting critical autism research. They would prefer that those who are outraged with 50 Cent's conduct instead donate their CDs to benefit autism and autism research. I can't think of anything more poetic then that.

The Move

Last week I posted an article on why I was moving, but I didn't talk about the actual move.  The decision to move was a tough one.  We really liked the school our son was attending, and liked the path he had gone through so far.  We had some great memories in our home.  But we have been feeling a little cramped, and with an increasingly indifferent State Legislature when it comes to Autism coverage, it seems Utah, as much as we love it, is becoming a difficult place to live with a child with Autism.  So, I started looking for other places to live.  I had the following criteria I wanted fulfilled in a new place to live: 

1. Great place for Autism coverage
2. Moderate climate (my wife doesn't like the cold, and I can't stand heat)
3. Close to autism-friendly attractions
4. No hurricanes (my wife's rule)
5. Small homes

The small homes section I chose because I wanted to more or less force our family to wittle down our collection of "stuff" so we would have a simpler feel to our home.  I managed to get rid of my jeeps (sold one, and gave the other away), culled out a lot of clothing that I didn't wear anymore, and cleaned out a lot of stuff from the garage that we just didn't use.  My wife has done the same thing with her stuff, and we have done the same with the boy's stuff.  We went from what would probably have been a 20 foot truck move to probably a 14 foot truck move (though we will probably go with a 17 footer, as it's the same price at uhaul.com).  

Anyway, I started looking at different Countries about a year ago.  Autism is well supported in the UK, Ireland, and Germany (from what I had read), and I've always wanted to live in Scotland, and so I started applying for jobs.  The problem is immigration to the UK is difficult, particularly now.  While I would qualify with a sponsor from a company, none that I applied for were willing to make the leap for me.  It was a pitty, since there was one job in particular for which I was considered that would have been awesome.  So, with Scotland out, Ireland going through a very rough economic situation, and Germany being out since my wife isn't keen on learning the language, I started looking Stateside. 

So with that criteria, I looked at all the States that have great Autism coverage and programs.  While there were a lot of States on the East Coast, California managed to pick up all the criteria we had, provided we chose a large city.  That's problematic, because the Sunshine Tax is pretty high in San Diego, Los Angeles, and the San Francisco Bay area.  But, I started to apply to several jobs and we crunched the numbers.  We started paying off debts, cards, and anything else we could, cleaning up our "stuff", and did a lot of praying.  It wasn't until after I had made the decision that we needed to move that I told my wife I was applying for jobs in California (she's from San Diego and has always wanted to move back there), so she had no bearing on my choice of location.  Though once I told her I wanted to move, and where I wanted that move to be, she told me I could have a motorcycle if I got her back to San Diego.  Good thing I came through, since I got my motorcycle two months ago.  ^_^ 

Anyway, it was a nerve-wracking decision, because of obligations here in Utah and my teaching schedule here at the University of Utah.  But it was a move that needed to happen, one that was a long time in coming, and one that took a lot of soul searching, planning, and prayer.  And after applying to 45 different companies (at least), and for about 50 or so positions, I landed a job at the University of California, San Diego.  This was the school that was my second choice for my PhD (the first was St. Andrews in Scotland).  Perhaps I will still be able to make it to that PhD goal, when the kids are a little older.  

Anyway, it was a great journey looking for a new place to live, and I'm looking forward to the move in just over two weeks to San Diego.  Once I'm there, I'll post some of my experiences of Autism in San Diego, so don't worry about me going away.  But, just in case you were wondering why I was quiet on so many topics in the past few months, it was because I was a little busy.  ^_^

Compression Garment Alternatives for Children with Autism

Article first published as Compression Garment Alternatives for Children with Autism on Technorati.

This summer has been a rough one for my son. He’s starting to regress from saying some words and spelling to nothing again, and his behavior has become more agitated every day he is not in school. We needed to do something.

We have been told about weighted compression vests before. Our son’s occupational therapist has mentioned weighted vests, and his response to them at school as part of his sensory integration therapy. Compression vests, much like weighted vests, increase the sensory input and helps some children with autism who suffer from to little sensory stimulation calm down. There’s some interesting research done by Lang et al which outline the sensory needs of children on the spectrum found here.

Anyway, I’ve priced the weighted compression vests before, and they tend to be pretty pricey (about $54 each). So we have been agonizing over whether or not to pick one up. But then, just by chance at a Costco, we saw something that made me think. Children’s life vests are made of Neoprene, much like a weighted compression vest. They are heavy, but not too heavy (not great for weight, but works), and they are easy to get on and adjust the pressure via the straps.

We were thinking of something for the kids anyway when we get to the beach for our summer vacation, so we picked them up to see what they would do. The change was dramatic, more than I was expecting. My son went from running around and jumping on the furniture to walking and sitting. It was a little too tight for him, but a little adjustment worked wonders later on.

The vests were about $30 a piece (we got one for our other son too), which made for a great comparison to a compression vest. It also gets him used to wearing it, so when we are at the beach he will have no trouble with it on. And the change made all the difference in the world for him.

Now, I’m not telling you all to go out and get a life vest for your child with autism, just because it works for my son. It may not work for your child. But it’s something to check out, and with the prices of vests at discount club stores like Costco and Sam’s Club, it might be a better alternative to expensive vests when you don’t know how well it will work for your child.

Autism: It IS Personal

Why is Autism so personal? Why do you have advocates of various Autism-Cause Theories fighting amongst themselves, or have parents desperately seeking out the latest and greatest treatment to make their children “normal”? Why is Autism so compelling, so intensive, and so consuming that parents are willing to spend themselves into bankruptcy just to get their kid to the point where they can hold down a job? It’s a tough question to answer, and it’s going to be slightly different for every parent. I think I can speak for most parents when I say, it’s all about the potential.

The Autism Spectrum is so diverse in it’s manifestation that it’s difficult to pin down what exactly is the cause. But one thing is very common: those with Autism definitely have a mind. They are smart, able to reason out much of their surroundings, and make connections between physical and abstract concepts. These are traits are clear signs of intelligence, but often they are hidden in the behaviors of Autism, such as sensory issues, inability to speak, issues with gross motor and fine motor skills, etc.

As a parent, we can see the potential in our children, if only these things were resolved. Some parents seek a “fix” to “cure” their children, others try therapy to teach their children to be “normal” in order to interact with others in society. More parents are seeking answers when there are none (currently), while doing everything they can for their children.

Regardless of the efforts being made by parents, society has been judging others based on the behaviors of their children on the Spectrum. Even though I know it was made in ignorance, I still remember a comment made by a patron of a local IHOP as we passed by, “I’m so glad my kids are well behaved”. Our son was 3, barely diagnosed with Autism, and we were still trying to wrap our heads around it. All of a sudden, through that comment, my son’s Autism was “my fault” as a parent, and I should have raised him better.

That seemingly passing remark became a very personal attack, perhaps because for generations (since the 60’s), it was believed that parents of children on the Spectrum were neglectful parents and they just allowed their children to run free without discipline. To this day prominent media figures have made this same assertion, in spite of the overwhelming evidence of genetic links of Autism and the growing research into environmental links. It’s a personal attack on parents when we already feel sensitive about the behaviors of our children. As such, many of us have delved deep into three aspects of Autism: Causes, Therapies, and Managing the Condition.

Causes
Autism is a difficult beast to get ahold of, even for researchers. It’s diagnosed based on observed behaviors, as opposed to blood tests, genetic research, or even physical appearance. Because it’s based on behaviors, anything that can cause that behavior can be technically called “Autism”. That’s why Autism is a spectrum of disorders to encompass any that have similar behaviors from clear genetic Fragile-X Syndrome kids to Asperger’s, PDD, and more severe Autism.

“The Cause” of Autism is just as elusive, because there are so many different disorders that can cause Autism-like behaviors. For instance, currently 26 genes have been identified with Autism, but if someone has a rare condition where they are unable to process gluten and cassein properly it can cause Autism-like symptoms. So while there are genetic links to Autism, it’s possible an intolerance and environmental stimulus can cause the same behaviors. Which is Autism? Both, by behavioral definitions. And that’s just the tip of the iceberg.

Therapies
Therapies are wide and varied from the tried and true ABA therapies (proven through double-blind clinical tests to be effective) and various alternative therapies that can have potentially fatal side effects and no clinical testing for evidence of effectiveness (heavy metal removal, IV transfusions, etc.). Many, if not all therapies are expensive. Some are covered by insurance (depending on your insurance and State laws requiring coverage), and others, including a diagnosis of Autism, is not covered at all.

Before you think about a therapy for your child, consult your doctor. If he doesn’t know much about Autism or the therapies related to Autism, he will know where to look or to whom you should be referred. Always keep in mind three things: Safety, Effectiveness, and Cost. If it’s potentially life threatening, don’t do it. If it’s not proven effective, don’t pay for it. If it’s too expensive, don’t dig yourself so far into debt that you can’t get out again. If any two of these are aligned with the therapy, hold on to your wallet and walk away slowly. If the therapy meets all three, run.

I’m not going to tell you which therapy you should try, or which one works. I can’t, because I don’t know what your child is doing or anything about their situation. But I can tell you that often your child’s public school district will have experts on hand that can help guide you, if they don’t already provide many of the services themselves.

Managing the Condition
School is great, and understanding Autism helps, but nothing compares to the day to day operations that keep you and your family sane. As a parent of your child, you know their in’s and out’s. You know what seems to generally set off your child into a meltdown (though you may not know why), and you know your child’s habits. As such, you build up a home life that comfortable and safe for your child, and the rest of your family. Sometimes this causes struggles with siblings (both yours and your child’s), and often it will great raised eyebrows.

For example, we found that our son loved to wander. It’s a common trait in children with Autism, and he was keen to go walking around the block. Often we would find that he would just disappear, and we would go searching frantically for him. To solve this problem, we installed a double-locking deadbolt on our front door so you need a key to get in and out. We then installed a security door with double-locking deadbolt on the back door. Our back yard is completely fenced in, so he cannot wander out of the back yard. Eyebrows were raised when the security door was installed in the neighborhood, but once it was explained the neighbors were fine with the decision.
Day to day operations also include going out in public. You learn how to manage your child’s condition through tools (my youngest is easily distracted by an iPod Touch or iPhone), or through games (my oldest likes to be tickled). It’s all about finding a happy medium in managing your child’s behavior while in public. You also learn to avoid situations where your child’s behavior just can’t be managed. We take our children out to eat generally an hour before or after “rush hour”, so as to manage crowds and noise when we eat. We go to places we know both our children will enjoy, and make sure we move at their pace.

When you are a parent with Autism, you are pouring your entire lives into your children. There is no “ME” in Autism. And while you still find time to decompress (when the kids go to bed, generally), you really are trying to be a super-parent in helping your child learn how to be the best they can be. And so to all you parents of children with Autism out there, I salute you, and I know what you are going through. We are all in this together!

Five Things I Didn't Know About Autism

Article first published as Five Things I Didn't Know About Autism on Technorati.
I’ve been told that having a child with Autism will change your life. Things will not be the same as they were before. I was also told that having a child will change things. But if you only have children with Autism, you don’t know just how different things become. So here is my list of things I don’t know are different:

1. Raising Children: I’ve always been told that raising children would be challenging, and when we had our first child I wondered what all the fuss was about. Sure, he would need attention (which meant less time on the computer games), but other than that I had a great first child. My oldest was generally quiet, curious, and loved to play. Everyone told us we were lucky, until we found out that he had Autism when he had turned three without saying even two words together. ?Then things like his inability to sleep at night unless he was held, his fascination with mechanical things (wheels, fans, etc.) and his desire to stack and order became clear. But until it was pointed out, I didn’t know I had a challenge raising my son. We just worked with him as best we could without pushing too hard, and ended up with a generally well behaved child with the exception of the occasional melt-down when something triggered his Autism.
2. Approach to Teaching: I’m a teacher by trade (or instructor, as I’m at the University), and an instructional designer. I spend a lot of time trying to think of ways to better approach my students, reach out to them, and help them retain the knowledge they want from me. Most of this is done on the fly while teaching in front of a class, with a lot coming from past experiences with different types of students. So when it came to teaching my son to write, read, or practice Math, it all came down to the basic skills I use with Adults that I try to apply to him. And I would get results that tended to last for a while, though they would occasionally regress (which is normal with Autism). ?The thing is, I didn’t know this was an issue. I thought this was what all parents did with their children. I mean, don’t all parents like to sit down with their child during their play and try to see what they do, how they react, and how you can tie in what they are doing with what they should be learning? Apparently, that’s not the case. Many parents out there trust in their children’s natural instinct to imitate their peers and parents to get a lot of their learning done. If you are a parent with a child on the Spectrum, you know that imitative learning is not common. So everything, from reading, to writing, to speaking becomes an exercise in trying to learn via other means. We’ve found that digital methods (multimedia and games) tend to work well with our sons, and we let them go with an iPad or iPod Touch. But again, this was something we just did, and didn’t know we had a unique and difficult situation.
3. Bolting: When my oldest was younger, we would constantly walk with his hand in ours. Perhaps it was because I was over-protective, but he would often just take off and run without looking back. Occasionally I would let him get quite far before I would race after him, but I didn’t think much about it. We just learned that when walking with our kids, we held their hands. They felt secure, and we felt secure. We didn’t know about bolting. ?Bolting is an Autism trait that most kids on the Spectrum go through up to the age of 4. They will just take off an run without looking back, forward, or to the sides. Their Wanderlust is pretty well documented, and many children on the Spectrum have been endangered or lost because they have been unable to keep close to their parents. We naturally wanted to keep our kids with us, and so we always walk with their hands in ours. We didn’t know you were supposed to, we just did it.
4. Diet: Our sons are picky eaters, but not in how you would imagine. One son will only eat meat, dairy products, eggs, and some breads (not white, but wheat, sourdough, rye, etc.). The other son prefers salads, dairy, all breads, and eggs. Occasionally we can get them to try something new at a restaurant or buffet, but they usually keep to their specific likes and dislikes. So, we kept them on the diets they like, making sure they get as much from the four food groups as possible within their constraints. ?What we didn’t know was that persons with Autism tend to have specific likes and dislikes because of the type of food. Not so much because of taste (though that is in the equation), but rather texture, color, and smell. My oldest likes his textures more firm like cheese, or crunchy like chips. My youngest loves soft breads with crunchy chips, crisp lettuce and veggies, and firm cheeses. It wasn’t until we learned that other children learn their likes and dislikes more from social queues (I don’t like lima beans because they are not popular in my cartoons!), as well as flavor. Rarely is it because of texture. That’s unique to Autism.
5. School: Our boys both go to a special education class where they focus on the skills necessary to become mainstreamed within the classroom. We have regular meetings with the teachers, keep in daily contact with them through notes in a notebook, and try to reinforce what they do at school in the home. I had assumed this is what every parent did when they were concerned about their child’s education. Apparently I have been wrong. ?Teachers look to the day when working with parents becomes the normal, established way to reach all children. Teachers can only do so much, particularly when you have 20 to 30 kids to one teacher (and no aides). They want all parents to come to them for a plan, and back them up when it comes to trying to find ways to get their child to learn. But apparently parents get defensive when teachers suggest goals with which parents could help at home, and teachers are slowly getting jaded or hesitant to suggest anything. I can often pick out a teacher who has been in the business for a while, because they are hesitant to mention anything negative about your child. It shouldn’t be that way. Teachers should be telling the parents where their child is struggling, and with the parents help make a plan to help their child achieve their potential.

So those are the five things I didn’t know going into parenting a child with Autism, and I’m glad I’m still learning. It’s a great opportunity to learn how to help your children.

Flame Retardant Chemicals and Autism? No Clear Connection

Article first published as Flame Retardant Chemicals and Autism? No Clear Connection on Technorati.

While reading my daily articles I came across an article in the Press Release section of the San Francisco Chronicle called "Study: Autism Linked to Flame Retardants - The Futon Shop's Chemical Free Mattresses are the Next Step in Helping to Reduce Rates of Autism". It sites a research study done by Irva Hertz-Piccotto, Ph.D. chief of the division of Environmental Health at the University of California Davis that supposedly proved a connection between PBDE's, which are flame-retardant chemicals used in furniture (and other things), and Autism. It's a PR piece done by a furniture company that doesn't use PBDE's, and so they are trying to "inform" (or better yet, scare) consumers into purchasing their products.

Anytime I see any claims like this, red flags fly all over the place. I found it interesting that so important an environmental connection as this would be so unknown, and only first published by a furniture company. Nope, something wasn't right. So I pulled open Google Scholar, and searched for the research paper.

It wasn't easy to find, but I found the article in the journal Environmental Health (2011, 10:1). The article is located here: http://www.biomedcentral.com/content/pdf/1476-069X-10-1.pdf, if you care to read through it yourself. The research project was more of a survey, looking to compare PBDE concentrations in children with Autism and those in the control group. The qualifiers were that though current levels could be influenced by a number of conditions (such as diet, current exposure, previous exposure, etc.), the hope was a possible connection between fetal exposure to PBDE's through the mother would reflect an environmental cause for Autism.

The research pulled plasma samples from the Autism group and the control group. Their PBDE concentrations were tested, and compared. The results? "Children with autism/autism spectrum disorder and developmental delay were similar to typically developing controls for all PBDE congeners, but levels were high for all three groups." So, based on this research, there was no difference between concentrations of PBDE's and a correlation between PBDE's and Autism. Now, that doesn't mean there isn't any possible environmental triggers or causes, but it just points out that the possibility of a connection between PBDE's and Autism are remote.

So, to the Futon Shop, the company that made the claim, I would say they need to check their sources a little closer before they try to use scare tactics to sell their products. I'm all for naturally produced and protected products, but I'm not a big fan of using Fear, Uncertainty, and Disinformation by any company to induce sales.

Keeping Autism Awareness Alive

Article first published as Keeping Autism Awareness Alive on Technorati.

Today marks the end of April, and the end of Autism Awareness Month. All month businesses have had special promotions to raise funds for research about this very prominent condition, while also focusing on providing events for families who deal with the condition every day. But, like Breast Cancer Awareness Month or Black History Month, it seems the public mindset feels they have done what they needed to do when they were assigned to do it, and will move on without another thought. African Americans don't stop contributing to our Country just beacuse it's not February. People don't stop getting breast cancer just because it's not October. And parents, siblings, and children don't stop working with those on the Spectrum just because it's no longer April.

So what can you do every day to help someone with who deals with Autism on a daily basis? Here are a few pointers:

1. Don't Judge: Don't be judgemental of someone who is struggling with their child. Chances are that child may have Autism, even if he doesn't "look" it. Autism doesn't really have a visual cue or physical "look" that identifies it. Children with Autism look just as beautiful as neurotypical children. Parents of children on the Spectrum are acutely aware of their child's behavior, and don't need your reminder. Sometimes a reassuring smile is all you need to give in order to help a parent feel more comfortable.
2. Don't Stare: Children on the Spectrum are completely aware of their surroundings. They know when you are staring, and they know what proper behavior is supposed to be. They just can't control themselves in their own behavior. Don't stare, because that makes them feel uncomfortable (just as you would feel uncomfortable when someone stares are you). They are real people, and want to be treated as such.
3. Don't Talk As If They Are Not There: Again, children with Autism are acutely aware of their surroundings (often too aware), and can hear you. Just because they don't speak or don't look at you when you are talking doesn't mean they can't hear you. Let me give you an example. Early in our oldest's diagnosis, we went to IHOP. It was loud, and the service was very slow. Our son became agitated and needed a walk to help calm him down, so I walked him around the unoccupied areas of the restaurant. A patron, talking to her friend, said "I'm glad MY children are all well behaved". This set my son off into another bout of fits. Needless to say, we have never returned to that IHOP again.
4. Try to Understand: Children with Autism are puzzles. They think differently, have unique perspectives, and want to know all about their world, or at least specific aspects of it. If you take time to watch them, you can gain insights into their world. Just minor glimpses, but it's often enough to hook you in. You will want to learn more, and it becomes an exciting endeavor to become part of their world.

Autism has increased in diagnosis to 1 in 88 children in the US, and 1 in 47 children in Utah (though there are some questions as to those numbers). It's becoming a more common diagnosis in our lives, and is most likely impacting you, the reader, in some form. You may have a child, neice, nephew, cousin, brother, sister, or have a friend that lives with a person on the Spectrum. Instead of writing them off as "stupid", "dumb", or any other adjective that could be applied, start looking at the way they learn, interact, and explore. I can guarantee that your life will change, and definitely for the better.

Light It Up Blue for Those with Autism

Article first published as Light It Up Blue for Those with Autism on Technorati.

April is Autism Awareness Month, a month to think about the causes of Autism, the impact it has on our lives, and the opportunities we can take to help those with Autism apply their unique gifts for us all. Municipalities and private homes are using blue lights to draw awareness to Autism.

The media seems to have used this time to focus on research into the causes of Autism, the recent CDC announcement of 1 in 88 kids in the US having Autism, and the various results of surveys that have been used to identify areas in need of research. But instead of focusing on the progress, they seem to be more concerned with the "scare tactics" to boost interest. In particular, they are focusing on the results of a survey that identified a trend between older fathers and obese mothers as being at increased risk of having a child with Autism.

The survey is very useful, as it identifies some common issues and tries to narrow the field of research. It's been used in the past for every medical condition from AIDS to cancer. And in the past the media has been right with them, reporting "causes" of cancer to be eggs, cranberries, cell phones, etc. Instead of taking the survey data at face value, the media seems to have taken it upon themselves to draw the conclusion of a link.

With Autism, it started with vaccines. One "doctor" (who has since been exposed as a fraud) had research data linking the MMR vaccine to Autism. It's since been disproved, but the media jumped on it with a thirst for ratings, readership, and advertising funds. Now, for the first time in decades, several large populations are at risk for Measles, Mumps, and Rubella. These are potentially deadly "childhood" diseases that had all but been stamped out in this country, and they are coming back with a vengeance. Why? Because of the scare of Autism.

Autism isn't scary. It can be frustrating when your child doesn't want to look you in the eye, or doesn't seem to want to talk at all. Or embarrassing when your child is screaming bloody murder in the supermarket because of the lights, starts head-butting everything out of frustration or takes all their clothes off in the back yard (or front yard, for that matter), because they don't like the feel of the fabric on their skin. It can cause panic when your child runs off and you can't find them, knowing they will not find their way home on their own (or think to).

But Autism can be amazing. The amazing abilities of these kids provide such a feeling of awe as they accomplish things their neurotypical peers wouldn't even dream of doing, such as tearing down a vacuum cleaner and putting it back together again (and it works!). These special children have the ability to create such a feeling of compassion in so many people, it's inspiring, because it's not pity, but rather a feeling of love for children who are so close to their feelings and very honest about their thoughts.

For Autism Awareness month, we are lighting our front yard light in blue. It's for all the kids who are in need of a voice, those who can't defend themselves against thoughtless comments, bullies, judgmental neighbors or family members. It's for my two boys who astound me every day with their progress toward mainstream education, and the smiles they bring to me and each other when we play. It's for the sleepless nights when dealing with night terrors that turn into full fledged meltdowns.

Article first published as What Autism Means for Me on Technorati.

This month is Autism Awareness Month. All month organizations will be trying to bring the awareness of Autism and it's impact on families to the forefront of all who care to listen. It's a cause that is near and dear to my heart, having now both children on the Spectrum.

So what is Autism? It's a disorder, and in ever-deepening levels. First, it's a disorder of the brain that causes social dysfunction, speech delays, and odd, repetitive behaviors. It's a disorder in that parents need to spend more time focusing on their child on the Spectrum to help them learn and keep up with their peers. It's a disorder that changes family dynamics for siblings of a child with Autism as their parents spend more time with the child on the Spectrum than with them. It's a disorder that places a burden on school districts to provide classes that focus on the Autism Spectrum disorder. It's a disorder that affects a family's choice of school districts, places of worship, daily routines, places of employment, and even the choice of where to live. Everything seems to revolve around this disorder.

The United States Center for Disease Control has increased the estimate of Autism occurance in the United States to 1 in 88 children. It used to be 1 in 150 when my son was first diagnosed, and then went up to 1 in 110. There are cries of an epidemic, calls for funding to find a "cure", rallies and walks to raise funds in order to help these children. Governments are being tasked with finding ways to fund therapies to intervene as early as possible in order to increase the chances of a child on the Spectrum to contribute positively to society. Companies are being established that use the unique abilities of many adults with Autism in order to help them take care of themselves. Political candidates, talk show hosts, researchers, and parents are doing everything they can to bring awareness to their particular point of view of this mysterious condition.

So what is Autism? For me, Autism is an older son that, at 7, remains simply on the cusp of speaking but not quite there. Yet he can type on the computer, use an iPad without difficulty, write, read, and now draw faces and stick figures. Autism is a boy who will do everything himself if he can, yet has trouble with some basic functions like using the bathroom. Autism is a son who has an amazing mechanical sense, able to take toys and, well vaccuums apart, and put them back together again (and they work).

Autism is a younger son, 3, who speaks in memorized phrases instead of words. A son who can also type, has taught himself adding and subtracting for the most part, excellent at matching objects and a love of reading. Autism is a son who is happy to see you one minute, and then frustrated that you don't understand his needs immediately.

Autism is a wife who is tired after getting up early with a son who had trouble sleeping, excited to learn what she can to help her children, and willing to accept conditions as they are and move on. Autism is a family who, in a true stoic sense, look to help in anyway they can while understanding the limitations we as a family have.

Autism is getting up at 1:30 AM and putting on old Basil Rathbone Sherlock Holmes movies to quite down a now wide awake 3 year old while trying to snooze on the couch. Autism is making time to talk with my sons' teachers to discuss what they have been doing in class what what needs to happen at home to support their efforts. Autism is accepting that my sons will most likely never be sports stars, popular at school, or accepted by their peers when they are mainstreamed. Autism is accepting the heartache that will come when my children will be bullied at school because they are different.

Autism is coming home from a long day at work, exhausted, and finding two children bouncing off the walls full of energy, giggling and waiting for a good tickle session. It's missing movies that you would be excited to see because you want to put your children's needs first. Autism, to me, means being thankful for the support and love of those around you, even when you can't seem to find the words to thank them personally.

If you have a child with Autism, perhaps you can relate. If you don't, it's hard to explain what is so different about the experience than raising neurotypical children. It's difficult to say, as I do not have any neurotypical children. But I love both my kids, and wouldn't have it any other way.

Autism Support Without Insurance Mandate

Article first published as Autism Support Without Insurance Mandate on Technorati.
The Salt Lake Tribune posted an article about a new program being piloted within the coming weeks by the state of Utah and area businesses: Providing funds through voluntary donations from local businesses and others to provide autism therapy at the critical ages between 2 and 6. The idea is amazingly simple, particularly since prior to this the only way parents with children on the spectrum could get any support was to petition insurance companies to cover autism.

The debate is not new: insurance companies have cried foul over the possibility of needing to raise rates in order to keep their shareholders happy. Parents cry foul because insurance doesn't cover a biological condition. Insurance companies counter with doubts to that research, and parents become more desparate in trying to find some support. All the while, children with autism go without critical intervention during the formative years, and become further distanced from society. Eventually, these children will grow up, and perhaps end up Wards of the State, as they would likely be unable to care for themselves.

Something needed to happen, and happen fast. Many States have passed insurance mandates to provide autism therapy. Many people cried foul at this for fear of having to pay even more for healthcare insurance, soon to be mandated itself (or face crippling penalties). Utah had a similar bill, which was effectively killed on Capitol Hill by many who shared these same fears.

But Representative Menlove (Republican from Garland), saw an opportunity. Several businesses, while not wanting to face increased insurance costs, were willing to donate funds for autism therapy. The benefit is clear: Not only do the charitable funds help them come tax time, but none of the funds are lost in administrative costs (as they would be in an insurance mandate). The funds are not acquired through a mandatory tax either, so no taxes are being levied against businesses or individuals.

And the best bit? Children will now get support where they previously didn't have any hope. The initial running through the pilot will be small, with only about 350 children being treated, yet it's a good start. It's a testament to the generosity of local businesses, and the recognition of the Utah Legislature of the need for autism support.

Intrigued by the report in the Tribune, I looked up the bill on the state website, and reviewed the voting record. In the past I have voiced my concern for children on the spectrum to both my house representative and my state senator. I received no reply from either (seems to be growing concern with local representatives, no replies from anyone).

My representative, Democrat Susan Duckworth, voted for the provision, which won in the house with an overwhelming majority of 67 to 5, with 3 absent or not voting. This is not surprising, as she has been supportive of autism bills in the past.

I then checked the senate vote, which won with an overwhelming majority of 21 to 8. Interested in which way Senator Daniel Thatcher, my senator, voted, I found that he voted nay. Needless to say I was very disappointed, though not surprised. Senator Thatcher has voted against any autism support bills that has come up before the Senate. I have tried calling three times, twice to let him know that I, as a constituent of his, would like to see autism supported in some form by the State and once to ask why he voted against the autism bill I supported. I sent him multiple emails, both as a follow-up to the calls and as initial contacts, to let my Senator know how autism affects my family and why I support it. But all these contacts have seem to fallen on deaf ears.

Prior to this non-mandated autism support bill, I had only seen Insurance coverage as the way. But even when given a bill that had so many positives and no funding impact, he voted nay. While I can't do anything about his voting record (and he clearly doesn't seem to be too interested in my vote), I can at least be thankful that other representatives and senators were more understanding.

This is a revolutionary bill, and one that could help autism families in states that refuse to vote for Insurance mandates. I look forward to the day when autism therapy is provided in some form or another to all children in the state of Utah, where currently 1 in 77 8-year olds have been diagnosed as being on the Spectrum. Perhaps it could become a model of corporate and government cooperation that benefits Wall Street, Main Street, and everywhere in between.

Oh, and Senator Thatcher, know this: you have lost at least one voter over this policy of silence, and that's me.

Siblings and Autism

Article first published as Siblings and Autism on Technorati.

On Thursday, March 15th (the Ides of March), our school district held another seminar on Autism. The topic this week: siblings of a child with Autism, and how they deal with their situation. With more children being diagnosed with Autism, and many within a family where several children are neuro-typical, it’s raised some questions on how these children feel about their sibling with Autism taking more time and attention from their parents.

We started with a panel of siblings, and they fielded questions about what they were expecting, and how Autism has influenced their lives. And then we had a presentation from Utah Family Voices about how siblings have expressed their concern. The presentation was very informative, and doesn’t just apply to siblings, but for any children that feel “neglected” by additional attention being given to a child with Autism.

Dating
One question that came up was how having a sibling with Autism affected dating. Most of those who answered the question said they haven’t seen a problem, as they tend to look for someone that is more compassionate and find their sibling as a perfect test. Others have said that it has changed their dating experiences, but often they were not “serious” relationships that were affected. What the director from Utah Family Voices shared is that most siblings want to find someone who is understanding of their family, including their sibling with Autism, and want someone that is supportive. Personally, having grown up with a brother who was undiagnosed but has Aspergers, I found that he was a very good judge of character in many of the young women I was dating.

The Role of Caregiver
This was a big one: the Role of the Eldest Child in taking on responsibilities of the Parent when they are gone. The reality of many children on the spectrum is their dependence on others to live. They require care at some level, and parents will not generally outlive their children. It’s difficult for many parents to think about that eventuality, but it is nonetheless true. And often, parents assume that their oldest child will be willing to take care of their sibling once they are gone. For the sibling, they often resent this assumption.

Of course, this doesn’t change the reality, and many siblings just deal with that requirement. But the time to talk about the responsibilities and how it will affect their lives is early on: they need to know when they are in their early teens what is expected, and what they want to do with their lives. It helps them have that responsibility in mind, and perhaps give them the chance to decide if they want to be a care-giver, or just a support. It’s a tough discussion to have for all concerned, but one that needs to be had as early as possible.

Explaining Autism to Friends, Family, and Strangers
This was a big topic as well, because it’s something with which we have all had to deal at some point or another. It was focused on friends of a sibling, but it became more of a discussion on how others perceive Autism, and how we can educate them. Autism is a genetic rewiring of the Brain that we are just starting to understand. As such, those with Autism behave differently than others, but don’t have any outward differences that distinguish them as “special needs”. During the 1960’s, it was believed that Autism was the result of bad parenting, and that has somehow stuck. So we talked about how we can educate others to the realities of Autism.

There have been a number of different responses. Some talked about cards with details and websites that explain Autism listed. Others talked about various t-shirts that exist that say “I have Autism, be nice to my Mom”, or “You can stare all you want, but I still won’t acknowledge you”, or my personal favorite, “If you stare hard enough, you may cure me, and then we can work on your social issues”. We found that the best response to the criticism of Autism is to handle it with humor, and then find ways to educate others. For family, often it’s a good documentary on Autism (found on most PBS stations, websites, and video stores), or a news piece. For friends, the News or websites that outline what Autism is, and how it affects the lives of those around them. For everyone else, websites that outline research generally helps, particularly for those healthcare and education professionals that seem skeptic as to the realities and extent of needs children with Autism have. That is where the cards come in handy.

Siblings
Siblings often get angry, resentful, and frustrated that their lives are changed from “normal” because of a child with Autism. And while we would like to think that our children are completely supportive because they understand how important it is we help our children with special needs, they have a natural reaction of wanting more attention. They therefore find ways to act out, sometimes even to the extent of declaring their hatred of their sibling.

What we as parents need to understand is that our children are reacting normally, and that these feelings are real and need to be discussed. Sometimes our children will not want to discuss their resentment, because they know it’s wrong and feel guilty about those feelings. But while they may not be what we expect, they are still very real feelings that need to be addressed.

How do you know your child is resenting their sibling with Autism? They will often react in one of the following ways:

• Mimicking behavior: they will start to act like the child with Autism in hopes of getting the same sympathy and attention.
• Rebellion: common for many children wanting attention, rebellion against their parents is a way of getting attention, even if it’s negative attention.
• Vocal about Resentment: often, particularly the younger children, will declare their “hatred” of the other child. The younger they are, the more truthful they will be in the moment. It doesn’t mean they really hate their brother/sister, but they may hate the situation for the moment.

So what can we as parents do to help our children deal with their feelings?

• Acknowledge their feelings: let them know they are important by letting them vent. Sit down and talk with them about their feelings, and let them be heard. It may not be immediate, but it needs to happen without any judgement. Your children need to feel comfortable coming to you with these feelings, even when they know it’s wrong (and especially when they know it’s wrong!).
• Don’t use Autism as the Reason: Never tell your child “We can’t do because your brother/sister has Autism”. That immediately breeds resentment. Instead, talk to them about limitations, and ask them what they think would happen if their brother/sister were put in that situation. How would they feel? How would their brother/sister feel? How would others react? How would the family feel?
• Keep it in Perspective: make sure your children understand the impact that special needs place on everyone’s life, including your own. They need to know what you are experiencing as well, to put their feelings in perspective.
• Not Equal, but Fair: Often children feel they are not getting equal treatment, and think it’s not fair. The story that the director from Utah Family Voices shared was a child who felt they were being neglected because their parents were always having to take care of her brother with Autism. Her parents turned to her and, after acknowledging her feelings, pointed out that she was more than welcome to take care of her own brother. At that point, she realized all that her parents managed for her, and she didn’t want it. She realized that it may not be equal, but it was fair to her.

We as parents worry a lot about our children, whether they have special needs or not. And the good news is that most siblings of a child on the Spectrum tend to be more compassionate people, and go into the compassionate fields like teaching and medicine. And as such, they look for those who are like-minded, regardless of with home they think they are in love at the moment.

The Dark Side of Parenting a Child with Autism

Article first published as The Dark Side of Parenting a Child with Autism on Technorati.

On Thursday, March 15th, Philly.com posted an article about the hard questions of Autism. The writer, a father of a child on the Spectrum, talked about the two most difficult questions that we are parents of a child with a disability face: what is in store for our child in the future?

His son mentioned how he worries about what his future will be like, and worries about what to do when his parents are too old to take care of him. Both questions are good ones, and often questions we as parents try to avoid asking, or even thinking about. They are legitimate worries that don’t have any easy answers, and the outcomes are completely out of our control.

Within our own homes, we can create an environment that will help our children develop, progress, communicate, and succeed. At school, with an IEP, we can help our children learn in an environment that is optimized for their needs. But with all these special requirements, what employer will be willing to invest in such a bright, intelligent child with so many special needs?

Usually I just try not to think about the future of both my sons, knowing that worrying now will not help them or me. Instead I focus on what I can control, which is his education and what help I can give them. I focus on the IEP, the steps for helping communication and social skills, building those basic life skills needed to survive in the world.

I can see my oldest take something apart and put it back together again, have it work, and then inspect each part, and I immediately see him as a brilliant engineer. My youngest I see play on many of my instruments and see him as a brilliant musician. I have my hopes for my kids, but I don’t know how to unlock those futures for them. That’s the frustrating thing about being a parent of a child on the Spectrum.

If you get a chance to read the article mentioned before, I would highly recommend it. It’s a very good read, though you may have to suffer a few tugs at your heart strings.

What the IEP Gives You: Services and Transitions

Article first published as What the IEP Gives You: Services and Transitions on Technorati.

So to date we have covered the IEP and what to do when you get one assigned. But what happens once you get it? What does the IEP give you?

Well, first and foremost, the IEP gives you the ability to develop your child's educational program (until 18, but we will talk about that). But it also gives you access to related services. Let's first talk about the related services, because they often determine where you would like your child to be, and which classroom setup should be made available for your child.

Related services are services that are not directly involved in your child's education, but are required in order to supply an environment that is best dedicated to your child's education. These include developmental, corrective, and supportive services as well as transportation to and from class.

1. Speech and Language Pathology and Audiology: If necessary you can get a speech and language specialist to help guide your child through their education by developing their language skills. This is pretty common with non verbal and semi-verbal children with Autism.
2. Psychological services: if your child requires counseling or any type of psychological support, the IEP allows for that support to be provided. Not often required for children on the Spectrum, it may be necessary for any child who has had a tramatic event in their life and it gets in the way of their education.
3. Interpreting Services: For those children who need an interpreter, generally for those who are deaf, one can be provided. This may also be an aspect of your child's language services, if your child's therapist determines sign language is the best way for them to communicate.
4. Physical and Occupational Therapy: Very common with children on the Spectrum, these therapies are designed to help them perform common tasks. But they can also be used to find ways to calm a child down when they feel too stressed and are unwilling or unable to attend to the learning task at hand.
5. Recreation: Every child needs to blow off steam when stressed, just like the rest of us. Recreation, and even therapeutic recreation is an essential part of the child's daily routine. That should be provided for your child's educational success.
6. Social Work Services: Again not very common with children on the Spectrum, but if a social worker is necessary, those services are available.
7. School Nurse Services: If your child has other health problems, a school nurse may be necessary. The IEP will outline those requirements and require the school to have a nurse on staff.
8. Counseling Services: Great for those who need them, including rehabilitation services.
9. Orientation and Mobility Services: Sometimes it's necessary to require ramps or other mobility aides be available for your child.
10. Medical Services: Sometimes just a nurse on campus isn't enough: your child may need full diagnostic or evaluation services for their medical condition. The IEP will outline those requirements to the District and School, and provide you with a way to address the issues.

All these services are provided when needed, and that need is determined by the IEP team. If you as a parent feel that your child has a specific need, address it with the team. If you as a team agree it needs to be fulfilled, it will then be the team's responsibility to see it done. If you don't agree, have some evidence or reasoning to back up your need. Keep in mind that while you are the parent, your child will likely act differently in class than at home, and teachers will only see what your child does in class.

Okay, so you have your requirements, and the class is going swimmingly. You have a regular communication schedule set up with your child's teacher, and you get updates. You or your teacher finds that a change is necessary in your child's IEP in order to increase the child's performance: what do you do? You will, as a team, meet to discuss your child's progress and evaluate any changes you may need to make to the IEP. Some teachers are great at this, others are not. Our son's teacher if fantastic at keeping up with his IEP, and will even send us a copy a couple weeks in advance of a meeting so we have time to review it.

Transitions
Okay, so now it's at the end of the year, and your child is moving up to the next grade level. Normally this isn't a problem, as most "registration" happens in the late fall, and most children just get assigned a new teacher. But for your child on an IEP, this can be scary. I remember wondering what was going to happen once my child moved from Preschool to Kindergarten, and then to 1st Grade. It was scary, and if it wasn't for the IEP meetings, I would have been panicking come the end of August.

Every transition period will have an IEP that focuses on five essential goals:
1. Training: What can your child do, and what can he not do? What type of class will he need to attend when it comes to the next grade, and will the staff be available to meet his need?
2. Education: How is your child performing in school, and at what grade level? Again, this is where having a general education advisor is handy!

3. Employment: At some point, what employment skills does your child have? This ties in to later-life occupational therapy. Currently I don't have to worry about that too much, but I still do (and my son is only 7).
4. Independent Living Skills: This is a critical skillset that we as parents need to give our children. My goal in life, actually, is to have both my children living indepentently when they graduate, and be able to function. I would like them to have jobs that will let them live on their own, contribute to society, and have them be productive. These are taken into consideration as part of the occupational and physical therapy sessions.
5. Transition Services: If your child is moving from one classroom to another, such as my son did when he moved from Kindergarten to 1st Grade, then you need to have a plan in place. The goal is to mainstream your child so that services are no longer necessary, and often that can mean transition services. These include evaluating what services are necessary to move from one classroom level to another, or what skills have been met that will allow a child to move from one classroom to another.

For instance, when our son went from Kindergarten to 1st Grade, his teacher, though she wanted him to stay in her class another year, felt his needs would be better served in a more advanced class that would cater to his academic achievements. So, instead of staying in the same class for another two years, he got moved into a more advanced class. It was stressful for him at first because of the change, but in the end was the best thing for him.

One last thing to say on transitions: age. Once your child has reached the age of 18, that child is now considered an adult and can refuse an adult's presence at their IEP team meetings. A way to guarantee that you as a guardian can continue to attend would be to obtain guardianship of your child. This might sound rediculous, but keep in mind that schools need to comply with the law, and the law does not treat adults with Autism any different than adults without Autism.

When your child is about to reach that age of maturity, you should receive a letter (about a year in advance) to notify you and your child of that responsibility, and what is expected of them.

The Individualized Education Program: IEP

Article first published as The Individualized Education Program: IEP on Technorati.

The IEP, or Individualized Education Program, is a tool used by educators to keep track of your child's progress through their disability. The process involves a lot of people, but is there for one purpose: to help your child get as close to mainstreaming as possible, and keep them educated with their peers. But the process can seem a little scary, or perhaps a bit intimidating, and a lot of parents seem to feel lost when they meet for their IEP with their team.

An IEP is generally generated after the school system has evaluated your child and determined there is a significant learning disability of some sort. Autism falls in that category, as does any kind of hearing, sight, speech, or developmental delay. Once the team has determined a disability or delay is obvious, they look for reasons behind it. It should be noted that language barriers or "bad teachers" are not reasons for an IEP, just actual disabilities that impair a child's ability to learn.

It should also be noted that the IEP process is different with each State, though just about every State Board of Education has the IEP process, and it should cover just about all the same services. If you have any questions regarding your specific State's IEP process, contact your school district's Special Education office. They can give you all the details you need.

Once you have a confirmed reason for an IEP, the process starts. At this point it doesn't matter what the school's determination is for the reason, because the IEP is not standard for each "diagnosis". Rather, it's designed to be customized to the needs of the child, as determined by the IEP team.

So who is this team I keep talking about? First and foremost, it is you as a parent, and your child. In addition, your child's Special Education teacher should be present, a representative from the school's Administration team (principal or delegated representative), any General Education teachers involved in your child's education (including any that advise but don't teach directly), and someone that interprets any evaluations given the child (generally a school psychologist).

The first three are pretty obvious: you, your child as the student, and the Special Education teacher. But why have a member of the administration there was well? Well, IEP's are conducted by State regulations, and has the ability to allocate funds if necessary. They are often called Local Education Agency (LEA) Representatives, though they are generally from the Principal's office.

Also, why have a general education teacher if your child is only in special education? Well, a general education teacher is there to represent the requirements expected of mainstreamed children. They know what the required educational goals are for typical students, and can help the Special Education teacher set goals that will bring the child closer to being mainstreamed. Because that is the goal of every IEP: to bring the child up to their grade-level expectations, and keep them there.

So now you have your team, but what do the do? Well, they start by having written statements about present academic achievements and functional performance. These are done through either direct or indirect assessment (tests or observation), and evaluate where the child is currently performing. It forms a foundation on which the team can plan how to build your child's education program. Another way to look at it is a road's starting point.

Next, your team will write down measurable goals for both academic and functional performance. Measurable means that your child will need to accomplish certain tasks X number of times, or attend to an activity for X number of minutes. Percentages doesn't mean anything in the measured world of your child's education, so don't let anyone get around you by adding that as a "measure". Focus on achieved results within specific time-frames and X number of times. If you have any questions on how something would be measured, it's not clearly measurable, at least to you. It may also help if you ask how it will be evaluated and assessed, that way you can do the same things at home to build on what your team has in store.

Next comes written statements on whether or not your child should attend to specific activities (for the sake and safety of the child), any needed accomodations for measuring academic achievement (someone to read questions to the student that can't see or read, for example), and when the services will start, stop, and how long they will last. All this should be in your child's IEP, and you should recieve a copy! Interestingly enough, our oldest son's teacher will send us a copy of the IEP ahead of the team meeting, so we have a chance to review and come in prepared for discussions. It's unusual, but definitely welcome!

So what should you as a parent ask when you meet with your team? Well:

1. Are the IEP goals measurable? I focused on this quite a bit, and for good reason. Make sure you can measure your child's progress, and then you know your teachers can as well.
2. Is my child in a regular education environment all or part of the day? Why or why not? If you feel your child should be allowed into a mainstreamed classroom, voice that concern! This is your opportunity to make sure you are heard.
3. Does the IEP list your child's accomodation needs? That includes any State-side and district-side testing needs, not just the teacher's testing needs. That way you know when they get their Standardized Testing done, they have the accomodations and modifications necessary.
4. Are the goals realistic for my child? Is the school listing goals YOU feel are attainable for your child? This is a tough question for everyone concerned, because you want to set goals that can be reached, but not so simple as to not challenge your child. The good news is that if the goals are reached "too soon", then they can easily and quickly be revised!
5. Is my child expected and able to meet graduation requirements? Graduation is something that every parent looks forward to, and every child should as well. But you need to make sure the goals are working your child toward that point, even if their disability makes it seem almost impossible now. Always push for that point in your child's future, and look for ways to help make it happen. That's the whole point of the IEP anyway!
6. When will the IEP be reviewed? This is a tough question. The State of Utah requires a review at least once a year to once every three years, but the review frequency is really up to the team, and that means you. If you are seeing significant improvement in your child's performance, or have any questions that need to get addressed, don't hesitate to contact your team members and request a review.

So now that you have gone through the IEP process, you are going to be asked to sign the IEP. Most States see this signature as an agreement to the document. But not Utah. In Utah, it means that you were present at the IEP process, and even if you don't agree with the IEP you can sign without binding yourself or your child to it's goals and guidelines. I've never had an IEP for my child with which I didn't agree, so I don't worry about it too much. If you do have any concerns and you are not in Utah, don't sign until they are addressed. Of course, that also means that the IEP can be implemented without parental approval in Utah, but there are safeguards for that, though that is another post.

So that is the process of going through an IEP! I would like to thank the folks over at the Utah Parent Center for their presentation they offered to the few of us there on Thursday night! It was a great deal of useful information that was definitely needed.

I'll post more on the IEP process later, so as to not overwhelm you all with posts.