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!