Friday, January 28, 2011

My Autistic/Celiac Gluten Experience

I was a mother of an unhappy baby. Everything I did seem to make this child cry. He cried and threw a tantrum from the time he got up, to the time he went to bed, both of us exhausted. He vomited, had a difficult time going to the bathroom, stared off into space, and appeared deaf. He played with toys inappropriately and had major behavior problems. He didn’t seem to want to connect with anyone, including me.

I had my best friend, Trisha since 4th grade, come to visit. Trisha earned her PHD in Economics and was a professor who adopted a special needs child. I asked her to take a look at my son and see what she thought might be the problem. She watched him for about an hour and told me her findings. She thought he had Autism.

“Fine,” I said, “okay, how do I fix it?”

“You don’t,” she replied. I was stunned.

She sent me to the right people to call and ask for services. My search for a cure began when I had him assessed by the State, for pre-school. He was almost 3 at the time. My other son was a “normal behavioral” child, so I figured it was nothing I was doing wrong. The doctor finally concluded that he had a form of Autism called Asperger Syndrome, PDD/NOS.

Considered a “high functioning autistic,” I was totally devastated as I saw no high functioning going on. I went home in a shocked numbing state. I cried my eyes out and mourned for my child’s life, because the doctor said I wouldn’t be able to handle him by the time he was 14 and he would end up in an institution of some kind.

It made my skin crawl. Then I mourned for my family’s life because it would change things forever. I finally broke down and cried for my life, for it would take a spine of steel to get through this event. I was already battling arthritis and it was hard enough to get around as it was. At the end of my crying jag all of the sudden I sat up and said out loud, really loud, “NOT ON MY WATCH”.

I got busy and did research on Asperger Syndrome only to find that what I read was this: Asperger is caused by a non-caring unemotional and unavailable mother. I was floored. What? This can’t be. I was dumb-struck. How did I go from having a wonderful 1st born son and did a great job with him, and now I am not a suitable mother for this child? I started doubting myself; I really had to take a week and think about it. I was appalled.

Then I got mad…I mean really mad. I slammed down the medical book at the library making a huge commotion in the dead silent room, and said a few….Ok a lot…of choice words, and left. The book remained on the table where I was reading with my marker in place.

As I was leaving, a gaggle of women ran over to the book to see what was up (I love women’s desire to “know”) and started reading. They were all hunched over the book then stood up, hunched over it again and back up looking at each other and talking like magpies.

I drove off. I went home and cried some more. I cried so much my eyes felt like they were bleeding. I was madder than a hornet. Once I was sufficiently mad enough I decided to do something about the problem.

“Why am I crying? I am not the one that has Asperger,” I thought. “What must it be like for him?”

I was now on a mission to free him of this horrible Asperger thing. Or at least try to make it better. I feel in my heart that God gives us all we need to fix anything…we just have to get off our asses and find out what it is.

One day we were having a really hard time together. My son was sitting in my lap (a short time-out) and he looked up at me and said “get me out of the window,” which meant that he understood that he really wasn’t completely here and functional. Shocked, I said….”I am trying son, I am trying”. He then sat back in my lap for the first time in six months without kicking or biting me and went to sleep, knowing I was trying to help him break through that window.

I thought it was a brilliant way to describe Autism. He was at that point where he not only understands something isn’t going right for him, but that SOMETHING is keeping him from being who he should be. I tried never to discuss the autism in front of him. But he was AWARE. This was the first sign that someone was really IN there and he was trapped. He had lost most of his language by then.

I read where some mothers thought that the shots changed their baby. I was convinced also because after he had his DPT/MMR shot his thigh swelled huge. The doctor said that sometimes it happens that it would go down and it did. However that’s when all the crying started happening. My child was in pain and there wasn’t anything that would make him feel better.

We finally took him to the hospital and they deduced that yes, he was in pain (I think they thought we hurt him) and then they thought he might have meningitis. They told us not to leave and there was a police officer in the hall. We had no idea they thought we had done something to him.

They would have to do a spinal tap. We were freaked. It took 4 male orderlies, 2 nurses and one doctor to get the job done on a 2 year old. He was very strong for such a little guy. They came out, sweat pouring off of them with the news. He did not have meningitis.

“Well, what is wrong then?” we asked. They would run more blood and other tests to find out. Nothing was ever found, and they had no broken bones or marks of any kind to implicate us for child abuse, so they couldn’t arrest us. That’s when my son changed completely.

So here I was ready to take on the world to fix my son. I told God I wanted him to only send me people that would help me with my son only because I wasn’t interested in people of any other kind. The next day, I got a call from Santa Barbara University to come and bring my son to be assessed for ABA treatment (Applied Behavior Analysis).

Meanwhile, my husband’s sister came across an article written by Karyn Seroussi: We Cured our Son’s Autism.

Pfffft..really? … Fine, I will read her book, do what it says, then write her a scathing letter about how incompetent she is, giving false hope to parents about changing their child’s life. Who the hell does she think she is? “This…this Queen?”

Well, for 3 weeks I did the vitamin therapy (crucial) then took away the milk and all milk products. Anthony drank a ton of milk, which I changed to soy. He didn’t like it at first. After 3 days the frequency of tantrums reduced by half, and after a while they were down to just one per week. It was a flipp’in miracle. Okay, now I can deal with things.

Anthony had a cerebral allergy to milk, of all things. Who knew? I didn’t know your brain could be allergic to anything! Then I started him on the gluten-free diet. For almost 3 weeks he would hardly eat anything, crying and begging for milk. He finally drank the soy milk, but still he wouldn’t eat. I put the food in front of him but he refused to eat.

Over the course of this, he got really skinny and my husband threatened to turn me in to the police for child abuse. By the third week he looked so weak I decided that we had had enough of the gluten-free diet. I started doubting myself again. I said to God: “Okay, God, I apparently don’t know what I am doing here. Show me what to do now… I give up and I am going to give him regular food.”

Lo and behold, that very day he decided to eat. He started eating the gluten free food!

Fortunately, a doctor friend of mine advised, “when they are hungry enough, they will eat.” So he has been on the diet since he was 3 years old and he is now going to be 18 this year.

My first trip to the market at the local health food store was an absolute disaster. I just looked around and there was everything he couldn’t have. I asked for help—surely someone here understood autism.

I found a wonderful woman whose name escapes me, and asked her about food for autistic people. She just looked at me. We kept looking at each other—eye to eye contact now—deep in thought. Nope, she didn’t know anything either. I just stood there with a perplexed look on my face…Didn’t this woman KNOW? Wasn’t she the owner or manager? She couldn’t help me?

The cart was in the middle of the Health food market, I started crying uncontrollably so loud I made a commotion. Everyone was walking around us to see if they could find out what was going on or help somehow. “All I want to do is feed my child something he can eat” I wailed. “It shouldn’t be this hard!”

She saw I was a meltdown in action (poor woman! Picture the wicked witch of the west melting, with that blood-curdling scream: “I’m melting! I’m melting!”) and asked if she should call someone.

“No, I said, between gulps of air, “I just need some food … for my son”.

“Okay. Okay, okay,” she said. “Just stay right here and give me a few minutes, I will be back with some Kleenex, and I am going to do some looking up.”

She brought me a BOX of Kleenex and I waited. I would have waited until midnight if I had to. People were very upset that I was upset. “Great,” I thought to myself….”go and make a spectacle of yourself.”

She made a few phone calls, looked in books, talked to other people. She returned with a few suggestions: Rice, bread that tasted like cardboard and eggs and meat with no spices for now, until she could do more research. I was entirely grateful. I was to come back in about a week and she would see what she could come up with.

I was in a daze, exhausted from the week from hell, and I walked into the store feeling very defeated since I just came back from a screaming match with Anthony’s new doctor. He was yelling at the top of his lungs “why hasn’t this kid had his shots?” He even told me he would turn me in for child abuse, even though it is my choice about whether my child should have the vaccination.

Stunned, I retorted that Anthony didn’t need shots at the moment and they weren’t that far behind, and kindly asked if, when he had time, he would read this article that Karyn Seroussi wrote and help me with it. But he didn’t hear me over his own voice; he was screaming at me so loud everyone could hear out in the waiting room.

I started crying. There was a nurse at the desk… “Turn ME in? TURN ME IN? I DON’T THINK SO!” I screamed….I looked at him, called him an ASSHOLE and yelled….”YOU’RE FIRED!”

I felt empowered and really physically strong. I felt like the incredible hulk. I don’t think anyone had ever fired him before. His jaw dropped. The whole place was silent. “You’re an asshole because you won’t listen,” I hissed, “I’ve had a normal kid before and this child isn’t normal. I need professional direction and obviously YOU don’t have it! So YOU’RE FIRED!”

He was fit to be tied. He stomped off in one direction and I started out the door. The nurse caught me and pulled the papers I brought for him to read out of the trash can he threw them in and said, “I am interested in these, I will read them. There are other parents who feel like you do.”To which I nodded my head weakly with thanks.

I could hardly see with tears gushing down my face, I had no control over my emotions as I took my child and went to the car. I somehow got him into the car seat, sat in the driver’s seat and balled my eyes out. I finally got control and went to the market. I wasn’t feeling like the incredible hulk anymore—more like a whipped puppy.

I get into the market with my son in the cart and market manager runs up to me (big smile on her face) and says with exuberance, “I am so glad to see you—I am so glad you came today!” To which I bust out in tears all over again trying to control myself and apologize profusely.

This took about 10 minutes of precious shopping time to calm my meltdown. No one seemed to want to see me, if anything all they seemed to do was yell at me…and not help. We talked and she gave me a list to start on. I bought what I needed, grateful for her help, and left. If the woman in the market ever reads this and recognizes herself I want her to know just how much our meeting affected our lives and how grateful I am to her helpfulness.

Back home, I unpacked the stuff and set to work. There…I had a start. My husband came home, saw the bill, and blew up. Enough said. By then, we had to move to San Diego, and I was greatly distressed that I would have to find help in another city of strangers. Fortunately, San Diego turned out to be my life saver. There were much more choices in brands, food, and stores in this area. Once settled in Vista, I went into the gluten-free diet full force.

This diet has changed Anthony’s life. He has had learning issues in the past but now his grades are acceptable and in regular classes, too. He plays a mean Metal guitar and has a band started. He is doing fine. I would recommend this diet for any family on the Autism spectrum. Try it for a year for best results. Eliminating cross contamination (say, cutting your gluten-free bread on the same cutting board as the one someone else cut regular bread on) is the key—if cross contamination occurs, you’ll have tampered with the outcome of a 100% gluten-free diet.

If the gluten-free diet is working for your child, keep him on it forever. The earlier you start the diet, the better the chances of recovery. I have helped many families with my knowledge of gluten-free foods and we’ve come a long way; it’s not as hard now as it was back then. In 1998, there was virtually nothing going on in the gluten-free department.

I sheepishly wrote Karyn an email, thanking her for her work on Autism and the book which I followed the explicit directions she gave, told her how it changed our lives and how grateful we were, then I told her that yes, she was “The Queen”. She actually e-mailed me back. I felt honored. She laughed at being the “Queen” and she thought my e-mail was entertaining at least. I try to use humor in scary situations to ease the stress. Every time I think about it …it brings tears to my eyes.

TO THE CONVENTION:

I am strolling around the convention looking at all the available expensive food that I couldn’t afford and I happened to look up on the wall. There on the wall was a list of symptoms. If you have 7 or more of these symptoms you most likely have Celiac.

I went through the list out loud: “check, um yes, check, check ,check, check, check, no, check, check, no, no, no, check,” and from behind me comes this voice saying “when were you diagnosed”?

I whipped around, “oh me? No, I haven’t been,” and was ready to explain why I was really here.

“Well, you are now,” he says. “I am getting my license to practice on Tuesday and my specialty is Celiac and YOU HAVE IT.”

Astounded, I stood there gaping with my mouth wide open. What? Come again? YOU HAVE CELIAC. Oh…My…God. I had just read an article how many parents (one or both) of Autistic children are Celiac and don’t even know it. I just stood there.

He went back to take care of his booth. I had to find a chair, and fast. I sat down. This was unbelievable news. This whole time I felt sorry for my son who would eat bread that tasted like cardboard for the rest of his life. Now I would have to embrace this joyless event too. I had been trying to find good bread and better tasting food for him but it seemed impossible. This was now my plight, too. Yipee.

I drove home with my bag of free goodies in tow, climbed out of the car and sat down at the table with my booty, ready to taste test. Many of the cookies were dry and crumbly. The bread still tasted like cardboard and sponge. There were a few items that seemed doable but my son didn’t want anything to do with them. Great, all that for nothing.

From then on, I changed how I ate and decided that I wasn’t going to make two different dinners. I was overwhelmed. I had to clean house, take care of a special needs child, and help my husband with his business, along with dealing with my disabling arthritis. I had irritable bowel-like symptoms, bloating, and stomach pain. At this point, we moved to San Diego county, which is where my search for good food began.

One evening, I told my husband that I wasn’t going to make two different dinners anymore. We were to all eat the same thing. If he wanted something special, he could go out to eat it. I was eating with my son to show him that, yes, other people eat this stuff too. Then after he went to bed I would eat “real” food. But now, things changed. I was on a mission. I finally decided that to do this as inexpensively as I could, I would only shop the perimeter of the store. Meats, fruits and vegetables. As for bread I bought different types from the frozen food section, hoping to make it seem better than it was.

Finally more and more books started coming out such as Lisa Lewis’s cook book that I started out with. The information in the front of the book is priceless and worth the money just for that part alone. I also ran into Carol Fenster at the next celiac convention and I bought a book which she signed and I use constantly. Her food tastes “normal”.

As I gained more confidence cooking gluten free, I started making bread for myself. I bought a bread maker, Kitchen Aide stand mixer, rice cooker, blender, and a food processor. These are the staples in my kitchen in terms of helpful tools. I also use my crock pot a lot, and my newest addition, a pressure cooker. I say pressure cooker with a smile on my face. How ever did I do this all before this little pot came along?

This is a quick preview of my beginnings with Celiac. My goal is to help you through all the difficult stuff and make life easier for you. There are many people out there going through the same as you and I. Thank you for taking the time out to read this post and I sincerely hope you will enjoy our time together.

No comments:

Post a Comment