A Story of Autism

Always best to start from the beginning, I think. Daniel was due on Christmas day in 2002. But the doctor, not being eager to deliver on Christmas, and either was I, talked me into delivering a week prior. On December 17th, I woke up, got my big butt out of bed and got ready. It's terrible knowing when you're about to have a baby. You can't sleep the night before, and it's as though a mosh pit is going on in your stomach. I got Roger up, who was in a fantastic mood knowing that soon he would have a son. Something I'd always wanted was a house full of crazy boys, but so far, had two very girly girls-loads of pink. We drove up to the hospital, and some morning radio show played a song they made up called wiper blades, and it was raining pretty good. When we arrived, they took us up to the room, got me ready, and checked me all out. For those of you who don't have kids, all modesty goes right out the window while in this room. Finally, they started things up and I was in labor...with wiper blades going through my head. I told myself I was going to do it naturally, but who was I kidding? About an hour into it, they offered an epidural, and I took it! Eventually, my doctor showed up and after only four hours, I had a sweet baby boy. He was awesome.

Roger's sister already threw me a big baby shower, and we were set when we got home with Daniel. We had Kimberly eleven months before, and I was busy. I thought it would be a lifetime before I gained any sanity. I was trying so hard to find a groove. One would finally lay down for a nap, but the other would wake up...it was nuts-o in my house.

Daniel was growing and developing just like any other. Every kid has a whole seperate personality. Caitlyn was sweet and curious, Kimberly was ornery and fun, Daniel was outdoorsy and a cuddle-bug.

Around the age of two, we started noticing that Daniel wasn't picking up on new words, and he was actually losing others. He had all normal ones, like dada, mama, and others, but not saying things like book, shoes,etc. Roger's mom kept saying that it wasn't a big deal, after all, his sister didn't speak until she was three, and when she did it was an entire sentence. We were going to the Health Dept. for their care at the time, because it was either Medicaid or free back then. Roger was working two jobs, and neither provided insurance. When we inquired about Daniel's lack of speech, they said all sorts of things. If I wasn't there, they'd tell Roger that I'd spoiled Daniel. If I was there, they said he was a "catch-up" kid, late bloomer, boys are slower than girls, blah blah blah. I was at a loss. I just kept reading to him, I bought flash cards, I was jabber-jawing to him all the time, but I kicked it up a couple notches. Any chance I saw to interact with him, I was on top of it. When you have a baby, you just kind of take for granted that they're going to speak. Did I do something wrong? Did I not do something enough, or at all?

We let time pass hoping that maybe he was a late bloomer. We didn't want to pause for one moment to think that something could be wrong with our baby. Even if there was, how would we ever find out what it was anyway? We've received about thirty opinions so far, and none of them medical!

I was flipping through channels one day, and a conversation stopped me. People were on television talking about autism. I'd never heard of it, but these people looked serious and fired up. I thought, what's all this about? Someone shortly spoke about symptoms. I remember thinking how similar they were to things that Daniel was doing, but not exact. Nah, couldn't be.

More and more shows like this were popping up, and Jenny McCarthy, someone I only knew from my teenage years as being a great burper on MTV, was going nuts. I'm sure you've heard her story, so I'm not getting into it. I found myself watching and analyzing everything that Daniel was doing. He was four now, and had no speech. When in extremely stressful situations, he'd say something that sounded like 'mama', but that was all.

My aunts stopped by the house and asked me if he was retarded. They, of course, did this in the kindest way possible, but it still feels like someone's hitting you in the chest with an elephant. I said, no, he's not retarded. He's brighter than both his bigger sisters, but just without speech. In so many ways he is, those girls just don't know when to quit. My aunt said she heard something about autism and how it sounded like him, and it did. The more I heard, the more I prepared myself.

One day, I got a call from my mom, who works at a hospital out of town. She told me about a doctor who diagnoses people with autism. I told her that was impossible, because I've already been told that I would have to drive clear to Toledo or Cincinnati, which may as well have been Phoenix. She said she gets charts all the time from this guy, and autism is on some of them. She gave me the name and number, I called. There was an enormous amount of relief when the receptionist said that they accepted Medicaid, so I made the appointment.

When I finally saw the doctor with Daniel, he asked me loads of questions. Again, similarities, but not always exact. The doctor came out and said it. He's autistic. I've seen moms on the internet say that they couldn't stop crying, it was a horrible shock. I was so relieved. I didn't cry at all. I thought, well, that's it- he's not retarded, he's not a late bloomer, and he's not spoiled. He's autistic. The doctor was quick to let me know that I hadn't done anything wrong. He too had a son with autism. (At this I had to restrain myself from pouncing on him with a boat load of questions). He told me that Daniel looked healthy, that he was good-looking, and I should just love him. I thought, 'ya don't say', but there's gotta be something that people are doing. He said there's no pill to get rid of it, just try to find a good place to stick him during the day, made a suggestion, and we were off. I was far more upset by what was said after the diagnosis than the diagnosis itself. That made me cry. A sense of helplessness is the worse thing in the world. I've been raised to believe any person can achieve anything that they set their minds to...so, what was this? Sorry Daniel, you'll never speak? Sorry, but you're never going to be on a date? At the big game? Never drive? With a few short sentences from a doctor, I became aware that my son was going to be denied some of the greatest joys in life. The joys of discovery, learning, and freedom.

After a few days of not being able to think of anything else, I decided that we weren't going to just lay down for it. It would be a huge failure on my part, as a mother.

Later that month, we went back for an MRI. Daniel was given a sedative, but it didn't take. They gave half of another dose, and it still didn't take. Instead we sat in a room watching him walk around looking like someone poured a keg down his throat. So, we left. I'm supposed to go back when I think Daniel will be able to be calm and still for an MRI. Great.

Immediately, I began pouring over books, magazines, pamphlets, anything. I was desperate to get my hands on any helpful information. I got on the internet, and googled my butt off. I found a social site full of moms who had kids with autism, and joined groups. I practically lived in those groups waiting to get information. I posted topics with questions I had and gave answers to questions that other moms had. After a few months, I realized that most topics were titled "Help!", but they didn't really want help. Any answers that were given to these women by anyone were not appreciated, and rarely even looked at. Some love drama. As for me, I try to keep it at a distance. Life hands a person enough drama without seeking it. So, I left.

Soon, all my googling was beginning to pay off. I soon found a wealth of information about treatment. This was great, because I now knew what that arm flailing was all about. I knew why he was lining things up, why he'd scream in a noisy place, and why he wouldn't touch certain foods. Sensory! Okay, so what do I do about that? Then I learned about the GFCF Diet. I'd always known that there were great benefits to eating right, but this had nothing on that. I learned that most autistic kids suffer from Leaky Gut. This means that a lot of these foods that we give Daniel, he's unable to process. So, these toxins in our foods are leaking straight into his bloodstream, then organs. From there, I started learning more about what was in our foods...it's nasty. I can't even watch a commercial for something "cheesy" without wanting to hurl. Some foods can even give you cancer. You can be a non-smoker your whole life, exercise, do everything right, and still die from cancer given to you through your food. So, I grabbed a copy of the no-no list, and went to the store.

After 2 weeks on the diet, Daniel was sleeping through the night. Prior to this, he would be up all night running through the house, sobbing as he straightened everything up. Sobbing. Can you imagine the torment of being up all night because you're so compelled to line things up in a row? My heart sank. After starting the diet, he grew calmer- temper tantrums were rare, he held my hand while walking across the street, no more banging things, it was a breath of fresh air. I took him to occupational therapy, and his therapist was in awe of how calm he was. He was much more focused as well. But the benefits didn't stop there. Daniel was starting to make sounds again...past "buh".

I decided to try the biomedical treatment with Daniel, since the diet is going so well. We've stuck to the diet, but he does get an occasional treat. We started him on great multi-vitamins and omega-3's, as well as probiotics. After a few weeks on these, we noticed that he was even better. Daniel was always a huge flight risk. He'd always run, and fast, and always east, which is weird. Now, we barely have to watch him while we're outside because he sticks around. I was gearing up to get him a locater bracelet, but as it turns out, we won't need one.

There are many steps to the biomedical treatment, and none are easy. Parents spend loads of money on supplements only to find that most aren't working. It's like a giant cocktail that you have to mix just so. But if you go on the diet, and see improvement, it's worth every effort to try. I've come across moms who say "Just love him as he is", and I do. But I refuse to believe that there isn't something greater going on inside of Daniel.

Daniel went to public school for preschool before the diet or diagnosis. Let me tell you, he could make the pope cuss. The school provided speech, occupational, and physical therapy for Daniel. But it was for 30 minutes each, spaced throughout the week. Back then, it would take Daniel 20 minutes just to calm down. I remember going to parent-teacher conferences and getting crappy looks as soon as I walked in. His own teacher couldn't even look at him without her nose scrunching up. His physical therapist said he had poor upper body strength because he couldn't open a bottle of water. We suggested that he try to open a bottle of soda...what kid is aching to open a water bottle? It really is the little things. We kept him out of school after that year. We started taking him to the therapy programs at the hospital, where he made little progress.

Last spring, my mom sent me a link for Easter Seals. After clicking around a bit, I found a link for the Ohio Autism Scholarship Program. There it was. Daniel would be able to get ABA therapy for school, it would keep him out of public school, and these people were willing to do it at my home. I knew Daniel would be more apt to learn while at home, and he would grow comfortable with these people,enabling him to do well in a special school next year. Great thing is, the scholarship pays for the schooling and materials. Materials are crazy expensive. The flash cards alone cost over five hundred dollars. ABA therapists around here typically charge about 20,000.00 a year. Some charge much,much more, and it's crooked.

I went through the scholarship process, scared to death, but determined not to let it show. In the first meeting with the public school, they were happy to let me know that they'd spoken to their lawyer. About seven stuffy-looking people looking down a long table at me. Tons of info sitting in front of them, and a few papers in front of me that I just wanted signed. After the initial haggling, they were.

Daniel's still being home-schooled with ABA until fall, when he'll be attending a great school. He breezes through matching, categories, and nearly anything they throw at him. He's still getting prompted with signing, he's just no good at sign language, but he'll learn.

After Daniel's diagnosis, I took him to the doctor for a regular check up. Daniel was not on the diet yet, and was bouncing off the walls. The doctor did his usual, then asked if I wanted a prescription for Daniel. I said "for what?". The doctor said that Daniel seemed hyper, and suggested pills. I declined, suggesting that the doctor take note that Daniel was five, and he's autistic, a great cause for bouncing off the walls. The doctor then suggested that Daniel wasn't autistic, but may have ADHD. My reply was a look of utter confusion. I got home, threw my stuff on the counter, called my friend, and cried. I went to the doctor to get a check up and a referral for an allergy specialist, and came home knowing that my doctor was on the opposite end of everything I stood for. Note: Do not give your children drugs, unless you've exhausted all other possibilities. I'm not the type of parent to take the easy way out when there's a possibility of a whole underlying problem. At this point, I'm doing all I can to get toxins and junk out of his body. Why put Ritalin in?

I was at a loss, and my husband didn't have any suggestions, except to find a new doctor. This means changing our insurance settings, finding a new one, putting them on our list, hoping the doctor isn't ignorant to autism, perhaps finding that they are, and starting again. So, I came to the conclusion that if my doctor's willing to be my puppet, I'll stay. This means, that if I need a test ordered, I simply need to have the good explanation of why. Not so tough.

I came across a list of Defeat Autism Now (D.A.N.) doctors, and to my surprise, there was one in Bluffton. I tried to set Daniel an appointment, I was so excited. This DAN doctor doesn't accept insurance of any kind. You have to pay out of pocket for tests, then bill your insurance company in the hopes that they'll cover any of it. But don't worry, if you don't have the money, there's still a wealth of information out there. Do what feels right, but get your doctors input. Some supplements are in high dosages, and you need what's right for your child's body weight. Doctors are helpful with this.

Explain the things that you're going through to your doctor. Ask them to attend a DAN conference. Beg. If they won't bend, leave. They make more.

The GFCF diet isn't cheap, but nothing can shake a mothers resolve. Your husband will fight with you over money, over missing bread, over bacon. Everything. I married someone who was raised on a farm and loves home cooking. When I started removing certain foods from Daniel's diet, I removed them from the whole house. His withdrawals, when he did have them, were fierce...and so were Rogers. The last thing I wanted was everything being undone with one piece of bread. And it didn't end there. I'd catch him lapping up dish soap. You wouldn't believe the many places that you'll find gluten.

There were many fights, many tears, and I'm certain the neighbors thought we were nuts. A lot of divorces are the result of autism. Hang in there, and talk. Don't shut the other out, address every issue that pops up, and stay positive. You'll make it.

Hope is a wonderful, yet dangerous thing. Here are mine. I hope Daniel's autism is one day reversed. I hope he leads a full, wonderful life. I hope someone out there whose child has just been diagnosed reads this page and finds hope instead of isolation. I hope someone else reads this and decides to stop staring at the grocery store. I hope they stop judging people thinking they're bad parents, but rather parents in the middle of Hell trying to find their way out. I hope you may see this as a way to start counting your blessings, because I've started counting mine. I'm so blessed to have a great husband, kids, and a mom that is depleting the forests from all the information on autism she prints for me. I'm blessed to have found such a beautiful, supportive friendship in Tasha. We're both blessed that she has such a great mom, that we're able to find peace and wisdom in her words. I'm blessed! Find your blessings, and hold on, because those will fill you with strength when you need it the most.