My oldest son was diagnosed with Autism at the age of 2 1/2 years old. At that time my oldest sister suggested I try a gluten and dairy free diet for him. She has a friend who runs a program for Autistic kids and has them all on gluten and dairy free diets. Since I wasn't sure what that had to do with Autism, I went on line to see what there was out there about a gluten/dairy free diet and Autistic individuals. What I found was many sites claiming that individuals with Autism often have problems digesting the proteins in gluten and dairy products. Furthermore the claim was that the younger the individual the better the results. What we found was that when our son stopped getting cows milk he stopped the head banging, self injurious behaviors, melt downs became less frequent milder tantrums that could be redirected, his less than 20 word vocabulary started increasing, he more fully pronounced the words he already knew, he started using words as a way to communicate his wants and needs.
He never before used words to tell us what he wanted. Before this he would grab our hands and lead us over to the fridge or to a cabinet or where ever the thing was that he wanted. We then had to guess exactly what it was he wanted. If we guessed wrong a melt down would occur. It was this behavior that caused me to think "something has got to give because we can't go on this way." I realized that whatever was going on with our son was beyond my ability at the time to help him. He needed help with his language skills. That much we knew. Even though I have a nephew who is Autistic and many years older than my son, I never connected the dots to think my son may be Autistic. To say that I never thought about it is untrue. There were times I would wonder and then dismiss it. Even my sister and her husband didn't see it. They said that my son was so much different than theirs that they didn't think he was Autistic. My son liked to cuddle and was very loving not at all like their son who didn't like that kind of contact at all. A speech pathologist came to evaluate him. She saw things we didn't. She couldn't tell us she thought he may be Autistic but referred us to see a pediatric neurologist for further evaluation. A sinking feeling began to grow. My sister shared very little about what it was like to raise an Autistic child but I knew that it really limited her ability to even leave the house before she got a cell phone. The school was always calling her about one thing or another. She had to be reachable at all times. I took my son to the neurologist and by the end of what felt like a long interview the neurologist told me that my son is Autistic. It dropped like a lead weight on me. All I could do is thank the Dr and gather up my children and get to the car. I held it together that long. Even now my eyes are filling with tears at the memory. It was probably the worst day of my life. The Dr said the last thing I wanted to hear. When I called my husband to tell him the news, I told him I had the "worst possible news." My husband was thinking some awful life threatening condition until I said our son is Autistic. For me, it was like watching all my hopes and dreams for the future go up in smoke. It was like someone close to me had died. I was grieving and I couldn't see past my grief to know what to do next. I had to deal with coming to terms with it before I could go on to the next step. A few days later (I am not sure exactly how many, it could have been a week later) I was talking to my sister-in-law and telling her about my feelings and how I was struggling with it all. She said something that I will never forget, something that made me put it all into perspective. She said "at least it isn't terminal and he is not going to die." She was right. I had been feeling like I was losing my child. I am not sure if I sounded over dramatic to her but everything I was feeling was real to me. That single sentence made me realize I wasn't losing a son that I know and love. It wasn't like he was going to change over night into someone I didn't know. He wasn't going to stop being the affectionate loving child I know and love. All the things I love about him were not going to suddenly go away. I wasn't ready to do the dairy and gluten free diet just yet. I was too overwhelmed with all the knowledge bombarding me. The speech pathologist that evaluated him determined that he was delayed significantly and needed early intervention.
In comes Arizona Early Intervention Services. We now had a coordinator and she got a speech therapist assigned to come to our home once a week to work on our son's language skills. We also had an early interventionist coming to our home once a week to work with him. Then after a small wait an occupational therapist was assigned to come here once a week to work with him. It was the speech therapist telling me I needed to get him off the bottle that started the dairy free way of life. At the time my son was drinking 3 gallons of milk a week, sometimes 4 gallons. He refused to drink from a
sippy cup. She explained that drinking from the bottle were preventing his mouth muscles from strengthening. Muscles that will help his speech. By the end of the week I came to the conclusion that the only way to get him off the bottle was to go cold turkey. We had tried slowly weening him off before but in the end it didn't' work. He just didn't understand why he could have the bottle some times but not others. The first day was difficult but I didn't cave. I told him it was the
sippy or nothing. In the end he took the
sippy but refused to drink milk out of it. The next two days were better he only tested us to see if he could get a bottle a couple of times. After the third day it was done, he accepted the
sippy cut but still refused milk. With in a week we saw the big changes I described earlier. He finally signed "more" and I rejoiced. It was a great big explosion of happiness. He was so surprised by my reaction. He learned that by simply signing "more" he would get a big reaction out of me. Soon he was not only using more signs but he was also trying out the words. It was like a door had finally opened and let the light in. He could finally see a use for his words, how he could get what he wanted easier. What once had been a nearly non-verbal child, is now years later quite the chatterbox at times. Language is a gift that many people take for granted. It is a beautiful thing that I am grateful every day for (even when I wish he would stop talking for a minute). I have gotten ahead of myself.
At the start all that we had taken away from his diet was cows milk. He still ate foods that contained milk. A few months later we made a trip up to Phoenix to meet my sister and her husband and go to the Phoenix Zoo and then stay the night at a hotel before they traveled on to their vacation destination. We had a great day at the zoo. No major tantrums and we were there for something like 5 hours. Which is a lot for a 22 month old. In reflection at the hotel, we realized he had nothing with dairy in it all day long. Actually for the past 24 hours. It was then that we decided to remove milk totally from his diet. That was not easy since so many foods have some form of dairy in it. He had improved with just the removal of milk but he still had meltdowns now and then. Removing all sources of it took us to yet another level of improvement. It would be many more months before I would be ready to tackle gluten. Two months after we decided to go diary free I met with a nutritionist who specialized in Autism. She provided me with what felt like an endless list of ingredients to avoid on a gluten and diary free diet. It was very overwhelming. She also gave me a list of places to go on line with more information. What I didn't get was any sort of guidance from her and how to start this diet. I didn't get suggestions on where to start other than a big list of websites. I even asked her what kinds of things she buys (since her child is also on the diet) but she didn't help me out there, her child is on a liquid diet. I felt thrown to the wolves on this. She told me I should try it but didn't give me help on where to start. These are the things that contain gluten and diary, read labels. That is it. WHAT!!! THAT IS ALL YOU GOT?! I was looking for advice on what kinds of everyday products were options. What did she buy? Having lists of websites is all well and good but when you are already overwhelmed with information on a disorder you only months ago learned your child had it is just overload. You reach a point of saturation and at some point your mind wants to let no more in until it can assimilate what it has already learned. I was still swimming in a sea of information and feeling like I was going to drown. I looked to her for a life raft and was left behind with only something that should keep me afloat if I used it right.
It would be about another 4 to 6 months before I would embrace going totally gluten free for our son. I took her list of ingredients to avoid and made it business card sized (two sided and very small print) so that I could start to try to make choices on products to buy. We didn't get rid of bread right off. I just started buying items that when there was a gluten/dairy free choice, I would buy it. As time when on I finally made the choice to pull all gluten from his diet. In order to do that we all had to go on a gluten dairy free diet. He was 3 and a 3 year old with communication difficulties just does not understand why everyone else can have something when he cannot. Especially something he loves like bagels. We began to experiment with the different rice pastas and found that there are some good ones out there and some not so good ones that quickly over cook. Later I will post my choices on the products we liked best. Some of the options were so totally unacceptable to me that it lead me to do more and more of my own baking. Bread for example. The frozen gluten dairy free breads out there are in my opinion not good at all. They are dry and have a grainy texture. Not at all soft and moist like traditional breads. If you never knew anything different that would be one thing. However, when you have had soft moist bread, eating thawed out dry grainy bread is not at all appealing. Cookies also tend to be grainy not to mention expensive (also many of the gluten free options are not dairy free). It is much more economical to make as much of the baked products as you can. One day I found a cook book on the clearance table at the health food store. The Gluten Free Gourmet is the name of the book. It is my bible. I had tried to make chocolate chip cookies with a recipe that used only rice flour. They were not great. The recipe in my new cook book was much closer to what I think of what a chocolate chip cookie should taste like. This book empowered me to be able to take many recipes and make them gluten/dairy free. What we found by going gluten free is that our son's speech and behaviors began to improve. Not the wow factor with dairy but still. Up until this point he always had runny stool, that normalized. His sensory issues decreased even more. Pain tolerances that were unbelievable up until we went gluten diary free were now seemingly normal. Before he could bang his head on concrete with out seeming to feel it. I am talking about head banging that worried anyone to witness it about brain damage. Seriously. I use to think our friends little girl (two months older than our son) was over sensitive because of how she reacted to what I felt was a minor bump. I just didn't have the experience of my baby screaming when he bumped his head on the table when learning to stand. We would wince and wait for the cry that never came. Soon we began to not react because we figured it wasn't that bad. Hind sight is 20/20. He was always Autistic. He was always a little different. Yes, he stopped chattering/ talking at the age of 18 months. Up until that point he was making the normal sounds many babies make with early speech development. However, it was not at 18 months that he became Autistic. He was not a baby with colic that some describe. He was a fairly contented baby. Before he could move on his own he preferred to be held rather than laid down. He in some ways needed the skin contact that nursing provided. So much so that he would not take a bottle from his father unless he had skin contact. Motion from a swing was very soothing to him. Often times he would fall asleep in the swing. Later when he was older he had to have a pen at all times. We would pull the ink barrel out of Bic pens so that he could carry around the tube. Even in sleep he had to have it. If he dropped while sleeping he would wake up and cry until we found it or gave him another one. Little clues like that were there all along.
Once we went full steam into a gluten and dairy free diet for our son it got easier little by little. I was able to find a fair variety of foods at my local New Life Health Food center. If our son ate anything with gluten or dairy in it, we would know. The first sign would be a terrible stomach ache that would keep him up all night crying. Then the return of melt downs and he would be hard to work with. In a way some of the more sever Autistic behaviors would return. If he had dairy it would last for about 3 days. If he had gluten it would last much longer at one point it seemed like it took him weeks to get back to "normal." Even trace amounts cause a noticeable reaction, though not as severe. I am very careful not to get items that say they may contain trace amounts or manufactured on equipment that gluten or dairy products are produced on.
Enviro kids brand is the one exception to that rule because I have never seen him have a reaction to their cereal bars. At this point he has been on the gluten/dairy free diet most of his life. He learned that the terrible stomach aches were from foods he can not have. For a long time we would simply tell him that the food he wanted would make his stomach hurt and that was all it took. Over time that initial reaction started to fade. Now his stomach does not hurt when he eats gluten or dairy but the rest of the response remains. His social skills decline, less patience, more likely to physically strike out, scream and throw a tantrum, unable to attend to tasks, more sensory issues, overall grumpy. When ever I try to explain this to some one they don't quite understand what I mean until they encounter him on gluten or dairy. Then they understand just what it is I mean. It is then that they understand just how important it is that he not be allowed to get even trace amounts.
Some day I hope to feel comfortable enough to eat out with him. For now I am loath to trust some one we don't know to make sure his food is prepared in a way that it is not cross contaminated with other gluten/dairy containing foods. For now we do it when we have no choice. So far I have been able to be prepared enough not to have that issue. I pack everything but the kitchen sink it seems, even to go to a friends house.
My hope for you is that you won't have to be thrown to the wolves as I felt. My hope in this is that I help at least one person's transition to this diet easier. My hope is that you have as much success as we have. Our son is high functioning and I am thankful every day for that. We are not yet done with the first semester of his 1st grade year and he is fully mainstreamed with one on one support for only two subjects. His special ed teacher is still there in the background making sure things go smoothly. For that too, I am grateful. We have a lot of special very supportive people in our lives and we won't ever forget that. (It is November and I am feeling especially thankful)
Thank you for reading all the way through this long introduction.
