Sunday, January 8, 2012

Oli’s Autistic/Celiac Gluten Experience

People have asked me how I started and why I am doing this. Here is a quick version of my story and I do it to make others lives easier. It's a way of giving back to those who have helped me along the way and to those dealing with new information and diagnosis for they have no idea what to do next. I understand.

I was a mother of an unhappy baby. Everything I did seem to make this child cry. He cried and tantrumed 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.

  I had my long time best friend, Trisha come to visit. Trisha has a PHD in Economics…one of the few women in that field, and a Professor. She also has adopted a special needs child.  I asked her to take a look at him 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, ok, how do I fix it? “You don’t” she said. 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 in Santa Maria, California. He was almost 3 at the time.

 I had a “normal behavioral” child before, so I figured it was nothing I was doing wrong. The doctor finally concluded that he had a form of Autism called Aspergers Syndrome, PDD/ NOS. Considered a high functioning autism, 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. Then 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 Aspergers only to find that what I read was this: Aspergers 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 Aspergers. What must it be like for him? I was now on a mission to free him of this horrible Aspergers 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 thy 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 tests etc. Nothing was ever found and they had no broken bones or marks 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 the rest I wasn’t interested in. 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 Karen Serroussi …How I cured my son of Autism. Phhhht..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. He drank a ton of milk, which I changed to soy. He didn’t like it at first. After 3 days the tantrums went to half, after a week they were down to one a week. It was a flipp’in miracle. OK, now I can deal with things. He 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, still he wouldn’t eat. I put the food in front of him but he refused to eat. He got really skinny and my husband said he was going to turn me in to the police for child abuse. By the third week he looked so weak and I decided ok, enough. I started doubting myself again. I said to God. Ok 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.  Low and behold, that very day he decided to eat. He started eating the gluten free food! Fortunately a doctor friend of mine said…when they are hungry enough….they will eat. So he has been on the diet since he was 3 and he is now 18.

My first trip to the market at the local health food store was a 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 whom I cannot remember her name for the life of 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 saying 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”. OK, Ok, Ok, 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 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 my son’s new doctor. He was yelling at the top of his lungs “why hasn’t this kid had his shots”! Told me he would turn me in (not getting  shots …are not against the law) for child abuse.

 Stunned, I retorted that he didn’t need shots at the moment and they weren’t that far behind and please, when he had time, would he read this article that Karen Serroussi wrote and can he help me with it. 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 ASS HOLE and yelled….YOUR 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 have 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 but 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 melt down. 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 impacted our lives and how grateful I am to her helpfulness.

 I went home 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 diet full force.

This diet has changed his life. Our lives. He has had learning issues in the past but now his grades are great and in regular classes. 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. Cross contamination is the key.  If it is working for your child keep him/her 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. 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 Karen 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.

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, che…..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.

 I was dumbfounded and 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 enjoy 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. 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 dealing with my disabling arthritis. I had IBS like symptoms, bloating, and stomach pain. We were in San Diego County at this point and here is where I really started my search for good food.

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…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, since the convention, 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 them seem better than they were. 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.

 I 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”. Here is where I started making bread myself. I bought a bread maker, kitchen Aide stand mixer, rice cooker, blender, and cuisinart. 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. However did I do this all before this little pot came along? That's what this site is about. I don't "create" like so many others do. I don't have that much talent. But I do adapt things and make some of my own things up. Cooking is about experimentation about the foods you love. Hopefully, you will find things you miss that you can now cook for yourself again. So let’s get into it shall we? How do we start? Take a look around.

1 comment:

  1. Olinda, What a beautiful post. Thanks for sharing your experience with the rest of us. Your son is lucky to have you and your determination to fight for his health.