Friday, May 16, 2008

Working With The School

After about two years of intense ABA therapy at home, I decided to start Connor in public school. This was a tough decision since I knew autism was so knew and the teachers were not trained at all in ABA or similar teaching therapies to help Connor. I knew I needed to start working with socialization and the only place I could get that was at school. Because I had a little baby at home, I couldn't go with Connor to school everyday. Instead, I hired a BCBA (board certified behavioral analysis) to go to the school and train his teacher and his para professional. I had no idea at the time how hard this area of his life was going to be.

Since Connor started school, I have learned many great lessons, most of which I learned after the fact. I now know to have a meeting at the beginning of the year with Connor's entire staff of teachers, paras, and specialist teachers. When I first suggested this, (insisted is more accurate) the teachers fought me. They insisted they never all meet at one meeting and they weren't about to change things for my child. I explained to the principal and the rest of the staff that I wasn't asking their permission and that we were all on the same team. They begrudgingly met with me all together. I described to the staff how Connor had regressed at fifteen months old. I showed pictures of Connor before the regression, during the regression, and after starting biomedical treatment. I showed some of his tests results indicating toxic amounts of metals. I described his OCD and how bad it was. I described how I used ABA to teach Connor. I asked for their help with food and making sure he never touched gluten or casein either in food or art supplies. After the meeting the entire staff told me how much they appreciated being included in the meeting and how nice it was to understand more about a student with special needs. I wanted them to understand that I was recovering Connor and that I was going to need their help to make it happen. Connor can be difficult because of his OCD and his inability to articulate what he is wanting clearly. He can have anger issues and lash out. If the staff doesn't understand why it is happening, then they might misinterpret the situation. I need everyone to be on his side and help make school a success for him.

Connor is now at the end of second grade. When I first started Connor on biomedical and diet, I really believed Connor would be recovered by kindergarten. I had no idea the depths of autism or how much a child needs to know. I underestimated the subtleties of communication and relationships. School is still a roller coaster at this point. He might go months with no issues and then have a week of behaviors daily. I hold my breath when the phone rings wondering if it is going to be the school saying he had an issue and I need to get over there immediately to tend to him.

Connor is learning about peers more everyday. He is learning that just because someone tells him to squirt a girl in the head with juice doesn't mean he should. Unfortunately he is learning most things the hard way. The lesson I take from such times is that he is interested in peers. He wants to make them laugh. He wants them to like him. I love that he is aware, the rest will come with time.

School is going to always be tough for me. I want more out of teachers and administrators and even students. I want Connor to never be teased or made fun of, but that is not reality for anyone, is it? Everyday I question whether Connor should continue in an institution that isn't set up for special and gifted kids like him. Should I continue to try to fit a round peg in a square hole?

Saturday, May 10, 2008

ABA Therapy

After I got the diet and biomedical underway, I started researching ABA (Applied Behavioral Analysis). I have a degree in education and thought that maybe I would be able to do this sort of teaching on my own. There were no schools in the area at the time that specialized in autism or ABA and I knew time was critical. Connor had started coming out of his "fog" of autism and was learning faster and easier than before. The only problem (not that there was only one) was that I couldn't find any books that taught moms how to teach ABA! I knew it couldn't be rocket science, and I thought of my self as a capable person, but I couldn't find anything to teach me step by step how to use the principles of ABA.

I don't know how well I can describe ABA. I read a lot of books by moms who said that it was the only teaching method that worked for their kids. I also read the statistics that showed of all the teaching methods for autistics, ABA was the only one with real data on recovery. I read a lot about other methods too, but I didn't see any concrete stats on success stories. I went with my gut and focused on ABA.

After talking to other moms, and doing as much research as a could, I decided to hire a consultant to train me and to run my program. For those of you calculating the costs up to this point, I know, it is crazy how expensive everything is! I got the name of a certified BCBA (board certified behavior analysis). She came out to the house and met with Connor and me. She brought data sheets and books I could read to understand what I was about to do. She explained to me how I would do everything hand over hand at first, ten or so times to get him to understand what I was asking of him. I would put him on my lap and hold his hand and ask him to point to a cat on a sheet of paper with animal's pictures on it. I would say, "Point to the cat" and then I would make his hand point to the cat. I would repeat that many times. Then I would ask him, "Connor, point to the cat" and wait a couple of seconds to see if he could do it by himself. If after just a few seconds he couldn't point to the cat, I would hold his hand and make it point to the cat. If he could do it, I would tickle and hug and kiss him saying what a good job he did. He loved the praise! He worked really hard for me to say "Good Job!". Some kids require food or a toy as a reward, but Connor never did. Praise was enough for him.

Imagine having to teach a child everything in this way. It is impossible to understand how much a typical child learns by watching and listening to other people. Since Connor couldn't do that, everything had to be taught "hand over hand".

Not long into this process I realized I couldn't do this by myself. I had just had another baby and needed to pay attention and take care of him as much as his brother. My parents were wonderful enough to offer to pay for a girl to come out and help teach Connor ABA. Where do I find such a person? They didn't have people on lists looking to do ABA any where that I knew. I started calling the local colleges and asking the education department for suggestions from any of their students. It took months of calling and emailing before I finally got a girl who was interested. Soon after starting to work with Connor, she came to me and said it was too much. Connor was aggressive and sometimes violent with his OCD (obsessive compulsive behavior) and would scream for an hour after something triggered it, which could have been her turning on the light. She told me she wouldn't be coming back the next day. I thought I was going to explode. Little did I know that everything happens for a reason. The next parent support group meeting I went to I got the name and number of a girl who was interested in working with autistic kids. She worked with some of the moms in my support group. The moment I met her, I knew it was going to work.

Now that I had an amazing person working with Connor, I could relax a little. I still had the BCBA coming to the house to give us our topics to teach and to do some more training. She taught us how to "break" Connor of some of his OCDs by just letting them happen and not letting him get his way. Of course that is easier said than done. Sometimes it was just easier to work around something. We soon realized though that the longer we allowed an OCD, the harder it was to break. In those days, we couldn't flush our own toilet or turn the TV or lights on. Connor was the only one who could do those things.

We still do ABA with Connor but it isn't as structured, it is just how we teach him. When Connor started public school, we had to bring in a BCBA to train his teachers how to teach him. School is a difficult place for Connor sometimes because of the inherent lack of structure. Connor still thinks in black and white, right and wrong. He is learning how peers feel and about subtle things like body language.

A good link for books on ABA.

Friday, May 2, 2008

Biomedical Intervention

Soon after I started the gfcf diet with Connor, I heard about a local autism conference that was going to be held. One of the keynote speakers was Lynn Hamilton. She had written an amazing book about recovering her son with a combination of diet, supplements and ABA. ABA is Applied Behavioral Analysis. She talked a lot about ABA and how well it helped her son. I was very interested in starting ABA with Connor, but I knew that would take time to learn how to use this particular teaching strategy.

At the end of her lecture she was asked if she had a local doctor who helped with her son's recovery. She pointed to a tall, thin man in the corner of the room. She said he was her son's DAN doctor and that he was helpful in running test for her and guiding her through his "biomedical" aspect of recovery. I was intrigued. I knew I had to meet this doctor and have him start this "biomedical" stuff with Connor. After the conference I got his information and immediately made an appointment with him.

I never do anything without researching it first. I don't buy toilet paper without knowing which brand is the best. So before going to see this mysterious DAN doctor, I decided to do some research on what exactly DAN means.

I credit DAN (I know now is Defeat Autism Now) for the info I used to do much of Connor's healing. It was the first association started with the idea in mind that autism is treatable, if not curable. It is a group of doctors and researchers and parents working together to find a way to help these children.

I saw our DAN doc for the first time not long after that conference. I had done some research on biomedical things being done to help autistic children. The biggest one being talked about at the time was chelation. Chelation is the pulling out of heavy metals. Since most (if not all) autistic children have severe heavy metal poisoning, it is the belief that by removing the metals, the body can start to function on its own to rid itself of toxins again. We started chelation treatment with Connor just before he turned two years old. I wanted to wait a full six months with the diet before trying anything that invasive. I wanted his body to be as "healthy" as it could be before potentially ripping it apart with chelation. VERY soon after starting chelation therapy, we started to notice words again. Connor was actually starting to talk again. Before he regressed (around 12-15 months old) he had about five or six words. Since his regression, we couldn't get him to say anyting. The diet cleared his mind in a lot of ways, but it didn't allow speech. Now we were getting five to ten new words a day. Soon he started speaking in short sentences. We were ecstatic by the results. We really saw the light at the end of the tunnel. We thought it wouldn't be long before he was playing typically with his peers and carrying on typical two year old conversations.

Not long into the therapy (maybe six months) I started to wonder what it was doing to Connor's body long term. I could see he was doing better externally, but what about his inner body? That is when I decided to take him off the therapy. I wanted to try nutrition and natural remedies. Many of you may wonder why I would mess with something that was apparently working, but my instincts told me it was the right thing to do.

I don't regret any decisions I have made with Connor. I followed my instincts and did a lot of research before doing anything with him. I continued to follow the DAN protocol. I went to their conferences in California and Oregon. I learned a lot about chemistry and anatomy (both of which were my worst subjects in school). I continued to see improvements with Connor. Each time I tried a new vitamin or added or removed a food, I saw a change. Not all changes were good with Connor, some changes made him worse. He was talking more and learning more, but he was still very obsessive compulsive and still wouldn't make eye contact. Everytime I thought we were getting closer to the end of the journey, I would see how far we have yet to go. Children are complicated beings. It is hard to see all that they are. Since I didn't have any other children at the time, I didn't know all that he wasn't doing.

I was randomly google-ing something one day when I came across a web-group of people following a protocol from a doctor. I was intrigued. It really seemed to make sense. The doctor was having people run genetic tests on their children to determine what supplements were right for them. It was very child specific. That was always my complaint with DAN. I felt they were throwing darts at a dart board. Now and again it would hit the target for your child, but you never really knew if it was going to be the right thing for your child. With this new protocol, I felt like we weren't guessing. I read the suggestions from the doctor on what I should do for Connor, just Connor, based on his genetics. It has been a relief every since.

Dr. Amy Yasko is the doctor, and the Yasko protocol is what we now follow for Connor.

Thursday, May 1, 2008

The GFCF diet

I started reading books by moms who had recovered their sons by using "the diet". I loved the book by Karyn Seroussi. She was so inspirational and down to earth. She talked about her search to cure her son and how she found the science behind the diet. I knew this diet would help Connor. Her son sounded so much like my son. Her story was so similiar to my story that I knew this was something I needed to try. Again, with the mindset that if it won't hurt him and might help him, why not?

At first the diet seemed so daunting. What is gluten? Is it as simple as not giving him bread? The more I learned about gluten and casein (milk protein) the more I felt udderly overwhelmed. Gluten is in EVERYTHING! Not only is it a hidden ingredient in almost everything, you also have to worry about the contamination issue. Contamination is actually a bigger issue than most people realize. When moms tell me that they tried the diet and they didn't see any change in their child, I always ask if their house is a gluten and casein free zone. Do they use the same pizza wheel to cut gluten and non gluten pizzas? Do they cut a piece of cheese and then cut something for their child with the same knife or on the same cutting board? Also, did they call the manufacturers of the packaged food they are giving their kids to make sure there is not a hidden gluten ingredient (like misc spices) or if the manufacturer uses dedicated gluten and casein free assembly lines?

When you are first starting this diet there are a lot of things you have to look into, but once you have done a bit of research (thank god for the internet) you can feed your family with confidence.

I believe you have to find fun things that taste good and are healthy for our kids, especially in the beginning. Our kids only eat chicken nuggets and milk for breakfast, lunch and dinner. Many parents believe their child would starve to death if they even attempt to put them on this diet. The question you have to ask yourself is, would you allow your child to eat poison if that is all they wanted to eat? It is hard in the beginning, but it only takes a couple of days before you start to trust your decision.

What do I feed my child? That is the first question I get with new parents. The answer is, whatever he/she will eat (in the beginning). I gave Connor Rice Dream icecream for breakfast the first week we started the diet. I knew he would eat it and I knew it was a safe food. We don't need to do everything at once. The important thing is to have a plan. Don't get discouraged when your child won't eat what you made (or bought at the store) in the beginning. Children in general are fickle about food. They like certain textures and spices more than others. I spent a fortune in the beginning finding out what Connor liked.

I made a lot of mistakes the first six months. I didn't know that Rice Dream milk had gluten. I didn't know that some french fries have gluten. I didn't know that wheat free doesn't mean gluten free. I also used soy as a replacement for a lot of his favorite things. I don't know if this was a mistake, but it is not the best way you can do it. Soy is like a cousin to gluten and casein. It isn't tolerated by our kids. I didn't take soy away from Connor's diet for at least a year. Luckily he didn't mind not having it.

I think that this diet was the first thing we did that really made a difference for Connor. His mind cleared. He stopped the weird giggle. He didn't stim as much. He really seemed like he was taking in more of his world. It was not a miracle pill for Connor like it is for so many other kids. It was a piece of the puzzle.

I would like to share some ideas for what to feed your kids (and yourselves). It is hard to come up with new ideas that don't have all of the no-no foods in them. I use to make homemade flour tortillas every day and homemade pizza dough. Now I don't allow gluten flour in my house. I hardly allow gluten or dairy in my house at all. Now we have taco night with crunchy shells and spaghetti night with rice pasta. It is different than before, not worse, just different.

My best friend and godmother to Connor is an amazing cook and pastry chef. She has offered to share some recipes and dinner ideas that your whole family will love. She is busy with her little boy (cute little blonde handful) but she will post ideas whenever she has time. Thank you Aran.

Please take time to think about the diet for your child. Remember, it is only food! There are so many things you can make or buy that your child will love if you just allow them the opportunity.