Diagnosis, Shmiagnosis.

Today, Melissa and I enjoyed a conference in Denver put on by CARD, or The Center for Autism and Related Disorders (www.centerforautism.com). There, one of the speakers was Joe Mohs (joeslivingproof.com), a young man who is considered to be recovered from autism. He showed a few videos from his childhood, proof that he was indeed autistic. He told his story, and answered many questions at the end. It was interesting. As I was observing him, I found myself looking for signs that I'm so used to with Brody. Discomfort with eye contact, unusual speech patterns or tones, even things like posture or how he rested his hands on the podium. Nothing odd, he seemed to be quite typical. Very nice to see, encouraging... and somehow discouraging at the same time. Let me explain.

The program he went through is called ABA, or "Applied Behavioral Analysis". I'm not going to take up your time explaining what ABA is exactly (that's why I provided the link!). Suffice it to say that it can be a very intensive program, depending on the needs of the individual. 40 hours a week of one-on-one therapy for months, even years. For Joe, it worked. He started at about 3-1/2 years old, and by the time he was ready for school, he was mainstreamed. They didn't even have to tell the teachers that he had previously been autistic. Judging from the videos we watched, he was easily on the same neurological level as our son, maybe even worse. So it is impressive!

The discouraging part about ABA is that it's crazy-unrealistic-expensive without coverage. They interviewed a few parents who had seen great success with ABA, and this is probably a snap judgement, but none of them appeared to be middle or lower class. Recently, things with insurance companies have changed, and it seems possible that you could get it covered, but it would still be difficult. I'm sure there are grants available as well. We may look into it.

Which leads me to the importance, or rather, the unimportance of the diagnosis. We decided to pursue the diagnosis in 2008 (as I mentioned previously), and it was a mixed bag. In my opinion, the best thing about it was an awesome day at Disneyland that we wouldn't have had otherwise. But there is this idea out there that you can be cured, or recovered, from autism. If we wanted to, we could have Brody evaluated again some day, and it is possible that they might change his diagnosis.

Some people are offended by the idea of being cured from autism. I'm not, but I can see the reasons to feel this way. After this much time, we have come to appreciate the brilliance Brody possesses in his unique mind. We recently discovered that he has something called "perfect pitch" (more on this in a moment). He has such a fascinating perspective on things. He is a wonderful reader, he's great at math and spelling. He has a great sense of humor, even if telling a joke or recognizing sarcasm isn't his thing yet. These are all things I would have to assume would be diminished in someway if he were more of a typical kid. So, I think we learn to embrace what makes him special, and the thought of him being any other way is really kind of foreign. Who cares what some doctor says? We love our kids, and every single one of them deserves to feel appreciated for who they are.

Brody recently was taking a group music therapy class, and the therapist noticed that Brody has a knack for recognizing notes. She suggested we meet with a CSU music professor, and she confirmed that Brody does have perfect pitch. He can recognize or even sing any note you tell him to. He can tell you what key a scale is in. He can recognize two notes played at the same time. He can hear a few notes, and sit down at a piano and play the same notes. He is already reading sheet music. And this is with probably less than 8 hours of one-on-one lessons.

A couple of months ago, even before we got him started on one-on-one lessons, he told Melissa that our Food Saver played 2 different notes on low, and 2 notes on high. Now, I would never say that I am a musician- but I know how to play several instruments a little, and I can't even fathom the raw ability he has. So, we hope we've found something that will be a way for him to express himself artistically, and gain some of that all-important self-esteem. We just bought an upright piano, something I never thought we would buy. Ah, the things we do for our children!

To update you on where Brody's progress is at: He is currently in 2nd grade, with minimal assistance throughout the day. He is advanced in spelling and math, but behind on comprehension and anything related to abstract thinking. His biggest deficit is still social interactions. He does have friends at school, the girls especially seem to enjoy his company- although I feel a little concern that he is not really viewed by them as a peer. He loves to play video games, we find that is his favorite reward and motivator, along with the occasional treat. He is currently getting speech, occupational, and music therapy. It is obvious that he continues to have issues with recognizing where his body is in relation to everything around him. He has trouble sitting still. He has improved greatly with writing and art, so it is encouraging to see his fine motor skills making progress. He is still gluten-free, but we occasionally allow other foods that he used to be restricted from. His gastrointestinal health is the biggest of our medical concerns (specifically constipation), although he does require less supplements than he used to.

Probably the most helpful thing I heard at the conference today was something I've already talked about here, but I have not applied it completely. These kids are capable of so much. You must keep your expectations high. We partially applied this in the sense that we would not allow him to use inappropriate behaviors for any reason (something I learned from Temple Grandin). But you have to look at the positive ways that you keep up your expectations. It's easy to say, "He can't interact properly with other people because he is autistic." But the truth is, he should be expected to try, we just have to give him the tools, and put him in the right situations to accomplish what we expect of him. You must expect a lot out of yourself as well.

There are some online resources for do-it-yourself ABA therapy, and we will most likely pursue that avenue. We still struggle with the school system- it seems you must be the squeaky wheel to get anything truly helpful accomplished. Home schooling seems to be in our future, we just do not know how soon. Feel free to post any questions if you are curious about specific parts of his progress.

Brody continues to be the greatest part of my life, and even though things are difficult at times, we always have fun together, and I would never want him to be any other way. I just want to give him a chance to one day be a happy adult, and even though it is a lot of work, stress, and anxiety, it is worth every second. ;)

The Cause and the Happy 1/3

The cause of autism (or at least the reason more and more people are being diagnosed with it) is probably one of the biggest mysteries in medicine. On one hand, there are solid measurables to prove that it is one the rise. On the other hand, it's been around for a while. Some people insist that Einstein was autistic, and having seen how good Brody is with math (He's doing multiplication now. Yeah- he just turned 6.) at such a young age, I believe it. Years ago, these were people that were shunned by society as being weirdos: people who struggle to interact normally with the rest of the world. People who are so ridiculously focused and intelligent that they never could fit in. Being that autism is a spectrum disorder, you have varying degrees of these effects.

One argument is that the vaccines are contributing to the problem, are they? Filled with all kinds of materials that wouldn't normally be in our bodies (such as aluminum, formaldehyde, MSG, and mercury), I think it's a worthy thing to consider. Doctors tend to be adamant that these vaccines absolutely are not the source of the problem. Some of them may say that even if they do create their own set of problems, they save lives by preventing certain illnesses. I think that's a somewhat more reasonable argument, but it feels like we're a long way off from knowing the answer to that question. Brody got most of the same vaccinations other kids get up until age 3. His doctor spread out the shots a little more than other doctors, but he ultimately got all of them. When we found out that Brody was autistic, we decided to be much more careful with vaccines... however, there's not much out there that he didn't get (other than tune-ups). Could it have contributed? Absolutely. But there could have been other factors.

One of the more interesting ideas is the use of antibiotics. I think it's pretty safe to say that we get way too much antibiotics as a society. Basically, if you go to the doctor with a cold, you will leave with a prescription for antibiotics. Our bodies can't fend for themselves, apparently. The problem is that not only do we deprive our bodies of developing their own defenses, we kill off the good bacteria.

People talk about how the day their child was born being the greatest day of their lives. Not me. It was terrifying. I am thankful for every day I get to be the father of this wonderful child. The day I found out Melissa was pregnant was a much more meaningful day to me. But the day he was born? That was a nightmare. (Stay with me, I promise this goes somewhere related to the topic.)

He was a few days late, which always (I imagine) adds to the anxiety of the delivery day. Things went relatively smooth all day... contractions 5 minutes apart for a while, then down to 3 minutes. Finally, the hospital let us stay. As Melissa is getting hooked up to the machines, things are still fine. Being that everything was okay, I head down to the car to get our stuff, as we would be staying for a while. When I get back, nurses are running in and out of Melissa's room, so I knew there was a reason to worry. Apparently, while I was gone, they poked Brody's head with some kind of sensor, and his heart rate dipped way down. They got it back up, but every freaking time they did something to him, his heart rate dropped.

After a couple hours of this, it finally dipped down to "emergency" status, and they rushed Melissa off to a room where I couldn't go with her. They made me sit outside for, like, 10 minutes while God knows what was going on in there. Melissa was terrified, she didn't know what would happen, she was alone. Finally someone let me in the room, where I got to hold Brody for the first time.

It had been an emergency c-section. His APGAR score was quite low, it was 3 out of 10. He had a pretty strong cry going by the time I was in the room, and his second score was 9, so he was obviously doing better by the time I met him. I got to talk to Melissa briefly, but they were busy doing stuff with her innards that I wanted nothing to do with. I got to show her Brody, but before I knew it, they were shuffling us off to another room. A few minutes later (maybe 30), we were all together again in Melissa's recovery room, and she finally got to hold him after 3 hours.

My memory of that time is also disturbed by what happened a week later. While everything seemed okay with Brody after the excitement of his first day, things were progressively getting worse for Melissa. She was swelling and putting on water weight. Her blood pressure was high. There were warning signs before we were discharged, but the doctors ignored them. Melissa had a heart problem.

Melissa was admitted to the hospital so they could see what was wrong with her heart. There was the myriad of tests and theories, everything was chaotic. I spent one night wondering if Melissa would live through the night. Fortunately, Melissa's family was able to help us take care of Brody, because we couldn't for a couple of days. After they gave her a diuretic, she lost 30 pounds of water within a day or two. To make a long story short, she had a "post-partum cardiomyopathy", or a fancy word for "we don't know what the hell is wrong with her." A few months of worrying followed that, as 1/3 of the people who suffer from this ailment have to have a heart transplant. Another 1/3 will be on medication for life, and the fortunate 1/3 recover.

I'm glad to say we were the happy 1/3 (so far). A few years later, someone suggested that the hospital pumped her too full of fluids during her c-section, and that may have been the cause of her problem. That sucks if it's true, because we decided not to have any more children because of the danger to Melissa. We will never know the answer, but I'm just thankful to have everyone alive at this point.

So as you can see, the first day & following week of Brody's life are not a good memory for me. What's interesting is that a lot of our friends who have autistic children have similar childbirth stories. There's a lot of c-sections going on out there. One thing we've heard is that the hospital administers a lot of antibiotics under the type of circumstances we were in. So, welcome to the world, Brody! By the way, we're now going to kill all of the good bacteria in your newborn body. It makes sense to me that this would lead to developmental problems.

Metals are suggested to be a problem, as I mentioned with the vaccines. Mercury and aluminum are being pumped into our kids. Another suggested problem is with mercury-based fillings. Melissa has a few mercury fillings, and it seems completely possible that Brody was exposed to an unnatural amount of mercury while he was growing inside her. Melissa is looking into getting different fillings, as we figure that mercury is probably not doing her any favors either.

I can't say if any one of these things are the cause of autism, although I am certain they don't help. Genetics surely play a role- as I mentioned before, I have family members on the autistic spectrum. I'm certain that I am on the spectrum. After a while, you tend to worry less about what caused it, and more about what you can do to help your child. I imagine that one day we'll look back in disgust at some of the things that are considered good medical practices, but that's just part of being an imperfect human. I mean, they used to bleed people who were sick! How stupid was that?!

November 2010 Update

It has been almost two years since my initial blog. First of all, I really appreciate everyone for taking the time to read it (I know it was ridiculously long). There are books upon books, and stories upon stories about lots of people who are going through a similar situation. The latest estimate is that 1 in 91 children are being diagnosed as autistic, and there are countless others who fall on the autism spectrum. It is impossible to gauge "how autistic" our son is. I do know that he has overcome a lot in the 42 months since we found out about this challenge. As I covered in detail, things like talking and basic interactions were still question marks back then. Now he speaks wonderfully, but there is plenty of work to do. In 2008, we were desperate to figure out how to get him toilet trained ("My kid can't go to kindergarten in diapers!"), and sensory issues actually became a much bigger problem after I wrote that blog. I've gotten used to telling people that we seem to just trade one problem for another, but the truth is that he has had an AMAZING year.

Around the time I wrote my initial entry, Brody was still in preschool. He seemed to develop a heightened sensitivity to noise around that time. He was very quick to cover his ears, for even low noises. This also seemed to be related to certain kids in his preschool class who liked to push his buttons, they apparently seemed to enjoy what appeared to be overreactions to loud noises.

Imagine that, kids like to tease.

This quickly turned into Brody f-r-e-a-k-i-n-g out every time another kid so much as looked in his direction. I could tell you story after story from this past year about how we couldn't be around any other kids without some kind of incident. And I'm sure you can imagine: if gaining friendships is such a necessary part of life, how will this kid EVER make friends when he covers his ears and yells "Don't look at me!" at any kid who is around?

It was certainly an inappropriate response, but you have to take care here: Sensory overload is painful to any person who is autistic. I mean, it is LITERALLY torture. When Brody would hear a loud noise, I could feel him break out in a full-body sweat and his heart would race. When these other-kid reactions would take place, we would try to calmly manage his reaction in the moment. Later, we would have conversations about what IS an appropriate reaction. You could tell that it was a real struggle for him.

Soon after I wrote that initial entry last spring, we finally had a breakthrough in the toilet-training department! It doesn't make for a very good story, so I won't go into much detail. We found that using a "chore chart" was the best way to motivate him, and we rewarded ANY progress he made. Like any parent would tell you, it is like a switch gets flipped. One day he was done with diapers, and we never looked back. I think his personal awareness needed to develop to a certain point. Autistic people do not have a built-in awareness of themselves like most people do, BUT it can be taught.

Something interesting about his mind: I see a real structure to how he looks at things. Timelines are fascinating to him. He is always talking about being a baby, then toddler, then kid, then teenager, then grown-up, then husband, then father. It is very methodical. We use this to his advantage- if there is something he needs to work on (like toilet training), we remind him that he can't move on to the next step unless he reaches a certain goal. It's easy with something very tangible, but as we go, I see the need to work in more subtle things. Things like making eye contact, understanding personal space, etc. He is emotional at times, but also very logical. Generally, he will accept any decision we make as long as we give him a reason that makes sense to him. We really deal with hardly any tantrums, thanks to his logical nature. If he wants us to buy him something, the answer is simple: We don't have enough money. He might say something like, "We will get it when we have more money." And just like that, no more problem. If it is a rule, we follow the rule -period-. You parents of neuro-typical kids are probably a little jealous, huh?

Well, if you've ever been to Disneyland, you would definitely have been jealous of us last summer (2009). Disneyland will make accommodations for children with special needs. As we prepared for our visit, we knew it would be a nightmare waiting in line with hundreds of kids around, and Brody freaking out about any one of them who so much as looked in his direction. So, we decided to take advantage of this provision. We barely had to wait in any lines. I'm talking, 15 minutes, TOPS, for any ride. I'm not gonna lie, it was awesome. For one day, it felt like we had it easier than all the other parents. Considering the other 364 days a year never feel that way, it was nice, and I really appreciate that they would do something like that at Disneyland.

Last fall, we had a chance to see Temple Grandin speak to a small group of people. Temple is a professor at CSU, a writer, and she is autistic. HBO did a great movie about her, it just aired for the first time in February 2010. It was fascinating to get her perspective. Many things she said stood out, but one thing really made an impression on me: When she was a child, she was not allowed to stim openly.

I spent a few paragraphs addressing stimming (self stimulation) in my initial post, so I won't spend too much on it here. With our son, he mostly likes to spin in circles and stare at random objects in unusual ways. Stimming has a calming effect for autistic people. A lot of these behaviors are not socially acceptable, so I thought it was interesting when Temple said she was simply not ALLOWED to do it openly. She said she was permitted to do whatever she wanted in her room (behind closed doors) for a half-hour every day, but beyond that, it wasn't allowed. She even laughed about how she knew how strange some of these behaviors were, like chewing on a piece of wood, but at the same time, it did help her feel better.

We took this information and applied it at home. We don't allow certain types of behavior, whereas before, it felt like we had no choice. If Brody wants to spin, he has to go do it in his room-- mind you, not as punishment, but as a way to teach that if you're going to do something like that, do it in private. I think he usually feels like he would rather stay where he is at, than go through the trouble of going all the way to his room. He never protests, although he does occasionally forget the rule.

Last year also marked Brody's completion of kindergarten. As I mentioned, he was terrified of other kids, so we figured it would be difficult. We also did not plan our vacation very well, and we ended up out of town for the first day of school. Oops. It was especially difficult when he did go, because everybody else already knew the routine. We felt like bad parents for not thinking that part through.

He caught on pretty quick, though. After about a month, he started occasionally having days without some kind of meltdown. He actually likes school a lot! It was hard to watch him around these other kids, because it was pretty clear that his reaction to any attention from them was making it more difficult to make any friends at all. Of course, recess is chaos, so we observed him walking by himself a lot. It's hard to tell if he wanted to be involved... I've read that a lot of autistic kids WANT to play with other kids, but do not know how. With our son, he really seems content in his own world. This could be good, as far as being happy in general. But it could also be bad, because he needs a certain amount of social interaction so he can gain some of the skills we all need as adults. Just as it was with getting him to use his speech to communicate, we had to find a way to draw him out.

We have had a few meetings with his teacher and the special education administrators to try to organize things a little better so that he could get worked in to the mix, so to speak. Their idea was to have him "shadow" another kid, and they chose one of the girls. This actually worked really well- he would follow her around at recess. If nothing else, I'm sure it looked like he was playing more like a typical kid would play. It ended up being a fantastic idea!

I couldn't tell you which day it was, but suddenly, he was not afraid of other kids any more. What a relief that was! I am glad that he always finds a way to overcome each challenge he is faced with, and of course, that means we inherited a whole new set of challenges. Now, we have to find a way to help him understand turn taking in conversation, nonverbal communication, etc. We constantly have to remind him to address us by name (Mom/Dad, as opposed to just saying whatever is on his mind without directing it to a person), and he still asks questions when he means to make a statement, problems we have had since the beginning.

It is really all about pushing him out of his comfort zone. In the most unlikely of places (The Jim Rome Show on AM talk radio), I heard one of the best pieces of advice I have ever heard: In order to be successful, you have to get comfortable with being uncomfortable. As a parent, you can never accept that you child CAN'T do certain necessary things, you simply must find the right way to teach them.

As I write this, Brody is currently in 1st grade. We see continual progress, but his digestive issues are as mystifying as they have ever been. He likes school in general, gets along with the other kids as far as we can tell, but focus is a real challenge. He loses things, can't remember how he got hurt, and you can only expect the school to do so much. He had an especially spacey week, and the school lost him three times. This was unacceptable, obviously, so we had to meet with everyone responsible for him to make sure we had a plan to never let that happen again. It would be nice if he could be trusted to go from point A to point B without getting sidetracked or distracted, but we're just not there yet. Sometimes he gets distracted on his way to the bathroom! Stimming has taken on the form of walking along the edge of sidewalks, or really anything with boundaries. He bounces off of walls sometimes. At home he walks around the room, bouncing off of the furniture over and over. He has a real need for structure, and sometimes he has to do things that create that feeling. I'm sure a good occupational therapist could help with that sort of problem, but like so many things, we are kind of on our own until a means of paying for that sort of thing manifests itself.

That's really the frustrating thing for many parents of autistic children. Every one of these kids could really benefit from daily work with lots of skilled, knowledgeable professionals... but this is the real world, and most of us can't afford it. We love our kids, and we do what we can for them.

I'm going to make an effort to update this blog with a little more regularity, and keep the posting size down. When you have almost two years to catch up on, it's hard to fit it all in! Thanks again for reading! If you have any questions you would like me to address, please send me an e-mail, and I will try to answer in any way I can!

Autism - Our Story

Anyone who knows me is aware that I don't say a whole lot of serious things... ever. I don't even like most serious TV shows or movies. Considering that April is Autism Awareness month, I thought maybe some people could benefit from our story. It's not much of a laugher, really, so it's a bit of a departure from my usual internet activities. To those of you who don't know us: Our son, Brody, who turns 5 this August, was diagnosed with Autistic Disorder this past summer. We have been aware of it since June 2007, just 2 months before his third birthday. He is an amazing, intelligent, beautiful (takes after the wife in that department!) child with a kind heart and a constantly cheerful disposition. He, like myself, loves to laugh. (picture - Melissa and Brody, March 2009)

Expectations. I'm sure most first-time parents have some basic expectations of what it will be like to have a child- from simple things, like playing catch, riding bikes, giving advice, yada yada yada. From the start, nothing has been what I thought it would be with our son. When he was born, there were complications. Melissa had to be rushed in for an emergency c-section, I couldn't even be in the room. I missed the birth of my son! That was kind of symbolic of how things would go from there.

(picture - Newborn Brody at Poudre Valley Hospital, August 2004)

Really, the first few months were pretty uneventful. He started crawling a little late (7 months). Looking back, I remember wondering why it was so difficult to establish eye contact with him. Also, as soon as he started eating any kind of food, even in mush form, his bowel movements got erratic. (Much more on this later.)

(Brody at his grandparents house - 8 months old, February 2005)

One thing I think most parents look forward to is hearing your child ask for you. "Mom! Dad!" I'm sure to lots of parents, this is something that is far more annoying than endearing, once you've heard it 20,000 times. To this day, Brody still doesn't address us this way. So, when he was going from infant to toddler, we expected "Mom" or "Dad" to be a first word. He said "Mom" a couple times, but that was it for probably a year and a half. He could repeat some basic sounds, but could not express a need with language. There was babbling, but there was no meaning to it. This was true early on, and all the way up to his third birthday.

Next up: walking. He was slow to pick that up too. Around 14, 15 months, I got fed up with it and spent a whole night holding him by his arms and making him walk around. Amazingly, that seemed to do the trick, and he was walking soon after. The doctor said "he's just learning at his own speed." Let me tell you something: Doctors are not helping anyone when they say these words.

(Brody was about 14 months in this picture - still not walking, but cute as could be! October 2005)

By now you can see how your friends' kids are developing, and the gap is getting wider. At 2 most of them are at least working on toilet training. They talk in short sentences. They run, play, throw stuff. Brody liked examining objects, lining them up in a specific way. He could type the whole alphabet, several words, he could count to 100. But there was still no talking, really, and hardly any interaction with anyone other than us or his grandparents. Looking back, it's amazing I didn't figure it out sooner. But he didn't act like "Rain Man" either- there was always good non-verbal communication when he needed something. Again the doctor said, "He's just learning at his own speed. He'll probably go from not talking at all to talking in full sentences." I'd like to go back in time and slap that doctor, because it would have been nice to get a head start on this thing back then. But, you want to believe that things are "normal," so you take comfort in the "expert" advice and bury your concerns for a few months.

(Brody at 2 years, September 2006 - he could type and sing the alphabet, but you can see the repetition.)

So now we're approaching his third birthday. He's still not talking. Yes, he can spell his name, repeat a few things. But there's still no meaning to any of it. Out of nowhere, he counts backwards from 100 to 0. ABCs from Z to A. We didn't teach him that. So, yes, we take comfort knowing that this kid is gifted! But it's not enough to curb our concerns. On a side note, he poops maybe twice a week. (This is important.)

(picture - Brody in the middle of one of his routines in the back yard, just 3 months before we became aware of his condition)

The most important thing that happened came thanks to my chiropractor, Monty Wilburn. http://www.drmontywilburndc.com/ While I was in for an adjustment, we had a conversation about Brody's development. Monty has a background in special education, thus, he really is much more than just a chiropractor. After explaining what was going on, he suggested talking to the school district. He never said autism, even though he was thinking it. This is important: I think lots of parents aren't ready to hear that their child has autism. I wasn't. However, I did share with Melissa what Monty said. I think that conversation led us in the right direction, and that was something we needed.

One awful night, probably just a few weeks later, Melissa asks me to come and look at the computer. It's open to WebMD, to a page about autism. "Oh my God, most of the symptoms describe my son." I was shaking, fearful, ready to cry but I couldn't. I knew it was right.

The following 8 points are from WebMD:

1. Difficulty with verbal communication, including problems using and understanding language. Check.

2. Inability to participate in a conversation, even when the child has the ability to speak. Check.

3. Difficulty with non-verbal communication, such as gestures and facial expressions. Check.

4. Difficulty with social interaction, including relating to people and to his or her surroundings.
Inability to make friends and preferring to play alone. Check.

5. Unusual ways of playing with toys and other objects, such as only lining them up a certain way. Lack of imagination. Check.

6. Difficulty adjusting to changes in routine or familiar surroundings, or an unreasonable insistence on following routines in detail. Check.

7. Repetitive body movements, or patterns of behavior, such as hand flapping, spinning and head banging. Check - mostly just spinning.

8. Preoccupation with unusual objects or parts of objects. Check.

That month was just horrible. You start researching. It's overwhelming. Yet, life somehow must go on. I had my master electrician exam at the end of the month, I needed to study. I had to keep working my usual 50 hours a week. Melissa was working at the time. Brody was fine, but we had this truth we had to deal with somehow.

The doctor told us we were wrong. Seriously?! Are you kidding me?! So we found a new doctor. He said the same thing, and "oh, by the way, he's behind on his shots." And if he's going to go to preschool, he needs his shots, right? (Bad idea- the heavy metals in vaccinations are a major trigger for autism.) We were just being thrown around by a hurricane at this point. I failed my exam (I never did study), thus killing my plan to start an electrical contracting business. We had to decide whether or not to sell our house, because we decided Melissa needed to be home with Brody. The house couldn't sell at a high enough price to pay a realtor, and we didn't have time to sell a house ourselves on top of this mess, so we let the bank have it back. Yay, we get to file for bankruptcy and move into an apartment now too. Could things get worse?

It didn't matter how bad things were, it was time to get to work. We started with getting Brody to express in words what he wanted. It was a tough process, but soon he was saying "I want" whatever he needed. Speech came along slowly, but steadily from there. The whole key is that he wasn't motivated to talk. People with autism don't have that built-in desire to communicate, so you have to get into their world somehow. This is the foundation of everything you work on with them- what motivates them? Once they start doing whatever it is, they will see that there are benefits. Thinking back to walking, he didn't want to do it, until he saw how fun it could be to walk around. That was a motivation problem, not a "physically or mentally-can't-do-it" problem. Same thing with speech.

(An example of Brody's babbling around the age of 2 1/2)

As far as speech goes, choices are an amazing way to draw out a kid who never talks. Make him say what he wants: "The Skittles or the Starburst?" Say it before you get it. Worked like a charm. To this day, when we can't get an answer out of him, giving him a choice will force him to say what he wants, even if he doesn't feel like talking.

There are thousands of better places to find out what autism is than this blog, so don't take my words as being proven science. There's opinions all over the place, most of which are valid. The problem is that there is not one thing that causes autism. It's a combination of genetics, environmental factors, carelessness with the products we take into our bodies, and so much more. But you have to start somewhere. We got Brody enrolled in the Head Start program here in the Poudre School District (considered to be one of the better places in the country as far as an overall school system). By age 3 he was in half-day preschool with a mixed class- some kids on the spectrum, and some "typical" peers. Social interactions are vital, so this was necessary.

(Brody's first day of preschool, just after his 3rd birthday, August 2007)

We got him weekly physical therapy and occupational therapy. People on the spectrum tend to be less coordinated, so therapy is a major component to intervention. With autistic people, it's been found that areas of the brain aren't coordinated like a typical person's, so it makes sense that physically, some work needs to be done. Even oral coordination is a problem. Simple things like chewing different types of food would help him to eventually speak more clearly. I took Brody to the park almost every day that summer, and it was a great way for him to work on this stuff while we had fun together. That's my happiest memory from that summer.

Something I haven't talked much about is stimming, or self-stimulation. It's explained as being something that many people with autism need to do to make sense of their world. It might be walking in a certain pattern, or lining up toy cars, staring at something up close, flapping arms or hands, even banging heads on walls or floors. With Brody, it has been something that evolves, but never goes away completely. To see a kid just flapping his hands wildly, that must seem strange to a lot of people. While Brody's stims are often less obvious to everyone else (like playing with a toy in a very repetitive way), for us it is another reminder that he isn't a typical kid. I found that trying to include myself in his routines helped to open him up a little, while reducing the frequency of the stim. If stimming is something he has to do, the goal is to develop stims that he can do privately, in order that it doesn't affect his social relationships.



(An example of Brody's repetitive patterns - you'll note that Melissa even comments about it, even though we didn't know Brody had autistic disorder)

Here's where I can relate. I think on some level, we all "stim." For me, I can watch Arrested Development over and over and over and never get sick of it. I could listen to Van Halen's 1984 a thousand times and love it every time. That might not sound strange to some people, but let's face it, that's not going to fly with anyone but me. Fortunately, Melissa can put up with a lot, so I don't suffer too much. Why not listen to a Radiohead CD I've never heard? Why not watch CSI Wheeling? I just want to watch or listen to something I'm familiar with, it makes me feel comfortable, happy. So, when you see a kid with autism flapping his hands, it's just like me when I laugh my ass off at Gob Bluth dressed in a giant banana suit, or Eddie Van Halen doing things with the guitar that I can't even imagine doing. I just know that it's socially acceptable to do it in private. I might even play some air guitar or drums if no one is around. If someone with autism can learn to do their stims privately, they can live in "our world" a little more easily. It's a good thing I don't do my stims in front of people... except that I just told you. Good thing I don't care if I embarrass myself. (Okay, I care a little, but I'm trying to make a point.)

This is the point where I want to mention what an amazing person my wife, Melissa, is. She researches tirelessly, never satisfied with status quo. There's so much to learn, and she never stops. I don't know how single parents could do it. She keeps up the house, cooks tons of food specific to Brody's diet (much more on that later), plays with him, teaches him, takes him to school, she even keeps our books straight- as if the rest of it wasn't enough! If it wasn't for her hard work, Brody would be nowhere near where he is today, and for that I will always be grateful. I rely on her for everything that has to do with our son. I know she would take absolutely zero credit for it, too. Every child with autism needs a parent like her. If it were completely up to me, I don't even want to think about how different things would be for Brody.

Melissa's Gluten-Casein-Soy-Egg-&-Nut-Free Recipes can be found at http://mvmommy75.blogspot.com/

(Melissa and Brody - December 2007)

Probably the most intense change for Brody was his diet. It seems to be a very common thread with people on the spectrum. Google "GFCF" and you'll see what I mean. That stands for Gluten-Free Casein-Free, and it's a diet that eliminates Gluten (wheat) and Casein (dairy). What has been discovered is that gluten and casein can have an opiate effect if it gets into the bloodstream. In Brody's case, he always had digestive problems. We already had the evidence manifested by his continual constipation. The theory (which I absolutely believe) is that people on the spectrum can have a "leaky gut," allowing gluten and casein to enter the bloodstream. Now, imagine if you gave your kid heroin. How well do you think they could develop? "Gluten fog" is a perfect way to describe Brody for his first three years, because once we eliminated gluten and casein from his diet, he really made progress. From what I hear, this can be done at any age, and it will have a positive effect. Melissa just told me that there was a 30-year-old non-verbal person with autism who started the diet and suddenly could speak! It's incredibly difficult, though, because you can't eat out, you have to cook everything. You basically can't have gluten in the house, because you have to worry about cross-contamination. And the only way to know if it works is to do it for 6 months. IT WORKS. Again, without Melissa, I don't think we could have done it.

I'd like to talk about insurance companies. They can all suck it. Apparently, if you can't give it a pill or cut it open, they don't want to do crap. So we do everything with no help from insurance. In fact, having to pay for insurance (that covered absoltely nothing) prevented us from having more money to pay for tests, supplements, diet, and so on. I'm sure there are insurance companies that can help us, but they aren't looking for you- you have to find them. And then you have to pay for them. While we're on the subject, the government can suck it too, because you have to be a genius to figure out how to get help from them. Thankfully, I'm married to one, so maybe we'll get to write off a thing or two.

I would like to invite most doctors to suck it also. Medicine is clearly a business first to many doctors, and these are the ones who told us over and over not to worry. Again, just like insurance companies, if you can't medicate it or perform surgery on it, they don't really care to spend their time on it- especially when there's someone on the schedule after you with an easier problem to solve and an insurance company who foots the bill.

Enter the DAN Doctor. DAN (Defeat Autism Now) Doctors should at least give you a shot at getting some straight answers and interventions that work. We found one in Boulder, an hour drive from here. His name is Steve Parcell, Naturemed is the name of his practice. http://naturemedclinic.com/ Without a doubt the most helpful doctor so far, he suggested tests that led us to find out that Brody has severe food allergies. Not only is he allergic to gluten and casein, but also eggs, peanuts, soy, turkey, citrus, and zucchini.

(Brody playing at the Oak Street water feature - July 2008)

That was the next big revelation: Even though he was already on the GFCF diet, his gut was still getting torn up by these other foods. (Brody loved eggs, and that seemed to be his worst allergy) Next we had to adjust the diet even more, eliminating the above items. But, the difference was amazing. He was 3 1/2 at this point, and he really developed a huge vocabulary at this time, and started interacting with other people a lot more. To this day, Brody is strictly on this diet, and every time he gets gluten or any of these other items, we can tell. He disappears into his own world, and his crap is messed up for several days.

This is our biggest complaint with school: While the social interaction is great for him, he's already far too advanced for the class, and no matter how well-intentioned the teacher is, he eats things he's allergic to when nobody is watching. I don't even have to be told when it happens, I already know based on how he is acting when he gets home from school. It happened this week.

When Brody eats something with gluten or casein in it, he almost totally loses concentration, rolls on the floor, plays with toys inappropriately (just staring, or lining up), he looks stoned (dialated pupils), and he becomes resistant to communication. So, I'm sure you can imagine why this is upsetting to us, when we put so much work into keeping him gluten and casein free.

As if the mental effect isn't bad enough, at least that only happens for a day or two. His gut really suffers. He gets a swollen belly, gas, diarrhea with mucous, and then constipation for several days. It takes at least a week for him to recover, and that's if we can keep him clear of the foods he's allergic to.

Other than being the place where Brody regularly has dietary infractions, school is an absolute necessity. It's the only way Brody gets to be around other kids with any regularity, and this year we have an excellent teacher who really tries to draw him out. He gets to interact with lots of people, and that's important- even if the diet stuff sets us back at home. Brody is scheduled to go into kindergarten this fall, and the funny thing is that he probably won't learn a thing (he reads at least at a 1st grade level), but he'll be around typical kids, which is what he needs.

(Brody and Lily going to the park - June 2008)

Maybe this would be a good time to talk about how smart this kid is. Okay, all parents think their kid is amazing in some way. I'm guilty of it too. Brody's uncle recently gave him a book that taught him every body part in Hawaiian. He listened to the CD that came with it, and after a week he knows every body part in Hawaiian. He quizzes us all the time- it's really amazing! I can't remember more than two or three words, and he knows, like all 30. His mind amazes me.

(Brody quizzing us on how well we know body parts in Hawaiian - Fabruary 2009 - Melissa graciously allowed me to post as long as you agree not to look at the mess in our bathroom, and ignore the fact that she's not "camera ready.")

Genetics play a big part in autism. Back in 2007, I had no idea about any of this stuff. Once you look at it, you may realize that there are traits in your bloodlines that would point to autism running in the family on some level. That's the case with me. I don't want to get specific here with my relatives, but let me just use myself as an example (once again):

I believe that I have APD (Auditory Processing Disorder). A person with APD has difficulty filtering out background noise. I found out that a close relative was diagnosed with this, and upon hearing the explanation, I realized that I have it too. I have trouble with large groups of people, talking on the phone, being in noisy environments, and this affects me in several ways- most notably social anxiety. I prefer very small groups. This might not sound too weird, but APD is on the autistic spectrum, with things like ADD, ADHD, Aspergers Syndrome, and a bunch of other disorders.

So, if I'm on the autistic spectrum, it would seem that Brody inherited some measure of autism from me. Maybe, for example, that is combined with genetic digestive problems inherited from Melissa, which aggravate his ability to think clearly, and you've got full-blown autism. It's just a scenario, but to me it makes sense. (By the way, I'm allergic to eggs, so he probably got his food allergies from me, too. I like to assume Brody got all the crap genes from me.) If you don't find a way to heal the digestive system, they could be stuck in the fog for the rest of their lives.

(Brody enjoying one of Melissa's GFCF cupcakes. )

Sensory issues are common with people on the spectrum. Maybe certain textures make your skin crawl. For me, chalk on paper is just horrifying. For Brody, loud noises are very intense, but he has learned to cover his ears. He does it a lot, but I'm proud of him for learning to do that- because now he can be around loud people and things, when he couldn't do it before. Here's one thing that's still a mystery: If someone sings a song he knows (and loves), many times it triggers a tantrum. It's been that way since he was very young. We learned to just never sing around him (which used to be hard, since I love music! But I got used to it.). Maybe someday he can explain why it is so upsetting to hear someone sing a familiar song, but for now we just steer clear.

Some random things that have helped: Recently, we found out that vitamin B12 could make a difference, and it has. He really has opened up lately (since we started him on Syndion , a solution of vitamins and minerals - find info at http://syndion.com/)- talking in sentences, playing with other kids, expressing not just needs and wants, but feelings. He takes glutamine and probiotics to help his digestive tract, although we still struggle with what exactly messes him up, as he still doesn't seem to be "normal" in that department. Tests have shown that he has improved dramatically, but we still have work to do there. He's probably going to have to be on a strict diet for the rest of his life.

People tend to think in terms of "curing" autism when they talk about it. Of course, if there were a cure, I'd be in line for it. On some level, though, I almost find the idea of a "cure" to be offensive. Weird, right? Once you accept the diagnosis, your perception of the situation changes over time. Brody might always have difficulty relating to people, but he's so smart and unique. Einstein would have been diagnosed with autism, if anyone knew what it was back then. I see the potential for him to be so brilliant (he already is), and to say that we want to cure autism is almost like saying we would have to throw away that gift. I think you have to approach it with this mindset: I'm going to change how I teach, not how he learns. I have to change my expectations of being a parent, but that doesn't mean my son can't live a happy life. My idea of happiness doesn't have to be his idea of happiness. Okay, so he won't be a NFL quarterback, but maybe he'll cure cancer. As long as he is happy, so am I.

(Brody and I in Estes Park, CO - Brody was about 27 months old here.)

Today, we still have challenges. We struggle with toilet training, eating habits, sleeping habits, antisocial behaviors, managing over-stimulation, and understanding emotions. Even with all of that, the next breakthrough always seems to be right around the corner. Something as simple as a sticker chart reward system has gotten him to consistently sit on the toilet, eat vegetables, clean up after himself, and sleep in his own bed. I continue to believe that the key to teaching him is to find what motivates him.

These days, Brody has a huge vocabulary. His receptive vocabulary is age-appropriate (meaning he understands what we say most of the time). Even his expressive language is now considered just below where he should be. Socially, he will interact with kids and adults, whereas 2 years ago he didn't acknowledge most people who weren't family. Sometimes he doesn't understand who you're supposed to hug or kiss, but we're working on it. There are a lot of challenges ahead, but I don't worry as much about his future as I once did.

Even with all that we have done for Brody so far, there are a lot of things we haven't even tried yet, mostly because they are prohibitively expensive! The following list represents things we would love to do for our son, but would have to be wealthy to provide:

1. Chelation (a process to remove metals from the body) $$$$

2. Hyperbaric Oxygen Therapy (this has produced amazing results in people with autism) $$$$

3. Physical, occupational, and speech therapy (the government, school system, and insurance companies do not make enough of these services available at a reasonable cost) $$$$

4. ABA Therapy (Applied Behavioral Analysis - a mixture of psychological and educational techniques that are utilized based upon the needs of each individual child, at a cost of $30-50,000 per year)

5. RDI Therapy (Relationship Development Intervention - a teaching method that instills basic social skills that typical children have built in, also at a cost of $30-$50,000 per year)

6. Countless other supplements, dietary modifications, and further testing to determine what other environmental toxins may be affecting him. $$$$

If anyone knows someone with a disgusting amount of money that they want to throw around, send them our way! I promise not to buy a Porsche with the money. Anyone who wants to e-mail our story to Oprah, you have my blessing.

In all seriousness, it's expensive and difficult to find the programs that can help you. It takes time to educate yourself, but all the while you need to get to work as soon as possible once you are aware that your child might have autism. Our challenge financially is that we make too much money to qualify for very much assistance at all. Truth is, I don't know a lot of people in this town who can survive on one income, let alone one income plus a child with special needs. We pay out-of-pocket for:

• supplements
• tests
• office visits to our doctor in Boulder (Not just the visit, but the gas and time)
• special food (example: quinoa flour, an important ingredient in Brody's bread, costs $10/lb., compared to regular flour, which is less than $.50/lb.)
• Diapers

At the same time, our hearts go out to people less fortunate than we are. There are certainly a lot of people with more financial hardship than us. There are people whose children have terminal illness. Even among people with autistic children, the prognosis can be much less encouraging than ours. It's hard, but things could be worse. Our faith helps us keep a positive outlook. Most of the time it feels like you're on top of the wheel, but occasionally it feels like the wheel is rolling over you. That's life, I guess!

Yes, it's devastating to learn that your child has autism. It doesn't always stay that way. I got my master electrician license a year later and still started a contracting business. We live as simply as we can stand to (always a challenge in this world), and in a way we feel fortunate to have to worry about how our son is growing up- as opposed to worrying about living in a nice house or driving an expensive car. Both sides of our family have been wonderful and supportive, and we have a lot of friends that have been great through all of this, even if we don't see them very much. I even started talking to my father again after 11 years of silence, and I attribute that to the fact that something like this makes you evaluate what is really important.

(Melissa, Brody, and myself - August 2008)

Well, I gotta go watch some Arrested Development now!