Gluten Free/Casein Free Diet (GFCF Diet)

When I first heard about this diet I didn't think it was very 'do-able' for us because Liam's main diet is very limited, and wouldn't you know that it all contains wheat and/or dairy. But then a friend, who also has a child with Asperger's Syndrome, told me about a book called Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders by Kenneth Bock, Cameron Stauth. Reading this book, that is full of scientific reasons and explanations for the sudden 'outbreak' of Autism, really has me thinking. I have seen improvement with Liam since he's attended Preschool and with our Reward System in place. But what if by changing his diet he can conscentrate a little more, improve his repetitive behaviors, make his speech a little clearer, and maybe even rid him of his nummular eczema and his inflamation on his cheeks. I feel that if I can help him in any way then why not try it?! I have started to switch him over to gluten free cookies (with no complaints) and I'm gradually going to introduce more gluten free products and then hopefully after the break in his school schedule in March then I can send him to school with his own lunches. Atleast there's more choices in the stores for buying gluten free/casein free foods. I have bought gluten/casein free breakfast bars, cookies, noodles, and whole grain bread mix. The thing that will be the hardest for him is his love for cheese! I'm hoping that with this new exploration in food choices that he will be more open to foods and maybe helping his symptoms and giving him a better life. Liam has gone from being bogged down with such emotion that he was hurting, to being free and acting like a kid should. We go through a pattern of 2 weeks of a 'normal' acting kid to 3 weeks of an emotionally tortured kid. I am trying my hardest to have that silly, imaginitive, smart kid come out and play every day!

Our Reward Techniques.

The Happy Face Tokens...

Whenever Liam expresses good manners, such as 'Please', 'Thank you' or 'excuse me', he receives a happy face token and when he collects 6 tokens then he can buy a car. He usually reaches his 6 tokens by the weekend. This really encourages good behavior and manners without having to remind him much.

The Ribbons...

Liam gets a ribbon every time he accomplishes something new or does something by himself. I write down his accomplishment and he gets to stick it up and when he reaches 5 ribbons (hopefully by Monday) then he gets to take it to school and share with the class.

The Stocking...

This is to encourage daily routines such as brush teeth, bath time, but it's mainly used for potty time. I made cards with pictures of the act that I want him to do and then I put it in his stocking when it's time to do something and I say, "Go check your stocking!" and he will pull out a card and then he will go do what the card says and when he comes back then I have a reward waiting for him inside the stocking, like a Hershey kiss, a sweetheart, or some little candy reward, for doing his task. This helps when he doesn't want to take orders directly from me and so I make a card up and put it in there and he will follow it without arguing.

I really try to think of new reward techniques so that he is always looking forward to his praise and rewards. He really appreciates positive reinforcement now. I used to try to give him a candy or sticker and he would freak out and have a melt-down over a reward. Now he understands and the stocking has made him look forward to surprises because he doesn't know what he will get. Surprises were hard for Liam to handle but this has helped him understand that surprises are good and are suppose to make you feel happy and excited. I just hope I can keep the ideas going so I can change it up and keep his interest because we are on a roll!

"I can ride my motorcycle!"

Liam finally got the hang of his tricycle! He was so proud of himself! He has had trouble
trying to figure out how to peddle and get himself going and keep going. He also learned, the very next day, how to turn the tricycle. He has learned how to catch a ball, jump with both legs off the floor, and ride a tricycle all in this year, mostly because of the influence of pre-school and his teacher. In this photo he has the happiest face I have ever seen in a year and a half. He is finally living in the moment and he has let go of his "inner-struggle" with himself. Adrian will be so shocked at how far Liam has come in this past year. He has really begun to show more confidence and carefree personality, not anxious or overwhelmed at all. He will let me praise him and not get upset. He used to get mad and have melt-downs every time I would praise him or give him any positive reinforcement. Now he seeks out praise and is proud of himself. Learning to ride the tricycle is a huge accomplishment for Liam, I'm so proud of him and how much progress he has made.

Inappropriate Play...working progress...

I have constant eyes on how Liam plays with Gwyn. I have a camera in his room that has a portable monitor so I can see what he is doing at all times. Now that Gwyn is older and into more things, I have to know what they are doing. Liam doesn't know how to play with Gwyn yet. His usual behavior with her is to get in her face and yell "aaahhh" in her face (like in this picture) and then flap his hands around. He doesn't know that he can't sit on her like a chair or step on her like a stool. He has no knowledge that he can hurt her and he doesn't care when she cries. AS children have no empathy for others and they fail to make the distinction between accidental and deliberate acts. When Gwyn touches his shoulder he yells at her and tells me "Tell her NO! She hit me!" I have to always remind him that it was an accident but he will repeat it over and over until you acknowledge his complaint and talk to Gwyn about not hitting. The one moment I didn't have an eye on them he ended up pushing her down and she bit straight through her lip, making a scar, all because she was touching his chair and that was the only way he knew to respond. He wasn't angry with her, he was just solving a problem. We are still working on this behavior just by reinforcing good behavior when he is being appropriate and letting him know when he is inappropriate. He gets a happy face token whenever he displays good behavior and if he collects 7 by the end of the week he gets to buy a car...his favorite "special interest".

Daddy Larry and Little Daddy Larry.

We went to the Zoo with Nana and Daddy Larry. The excitement of all the animals and the outdoors was plenty of excitement for all the children, except for Liam. Liam was more interested in copying Daddy Larry's walk, stride, pace, and movement. Only Daddy Larry could talk to Liam the whole time, if I suggested anything it was shot down quickly and almost resulted in a melt-down. Daddy Larry would suggest the same thing and he would quietly go along with it. It was amazing to see how intent Liam was on watching Daddy Larry's feet and arms and how well he mimicked the motion, and kept in stride with him. I later found out, in Tony Attwood's book, that AS children are great mimics, and portray themselves as the other person. This is why Liam would just stare and watch children play for hours (4 hours at childcare) but would not have any intention in participating because in his mind he was participating through the other children. It was very interesting to read that AS children play through other children, while they don't physically play along, they imagine themselves as the other children. This was almost calming for Liam to concentrate on walking and acting like Daddy Larry, he didn't talk or say a word the whole time he was mimicking. If you notice in the top right photo that he sits there with a serious face and is avoiding the camera, he was in his mimic mode and can't stop and pose for a picture.

The beginning of head banging out of anger.

This is Liam banging his head out of anger. This only shows a brief glimpse of the severity of his tantrums, I didn't want him to do it for long, but I just had to video tape it for a record. To break him of this behavior, I sat in his room for 3 hours every night and wouldn't give any attention and when he started to bang his head I would get up and put him back on his pillow and sit back down without saying a word or looking at him. I did this for 2 weeks and he finally stopped this behavior for bedtime. But he still acted out when he was mad during the day and I would restrain him for hours until he stopped fighting me.

Hush little baby...

Liam's first 4-5 months of life consisted of eating and the 5 S's.

1. Swaddle
2. Shush
3. Side/stomach (laying)
   Swing
   Suck (pacifier)
   
   If not done in this order, he could not be soothed to sleep. I found this pattern when he was 2 months old. He would only respond to dramatic and over stimulation movement. We went through 3 swings because the motors all burned out on them...all brand new. The noise in his room was a loud ocean noise that we had on constantly until he was 1 year or maybe alittle older. He would never 'cry himself to sleep' he would just cry for 3 hours. I used to say around 3 months old that he's going to need to learn anger management when he gets older, some of that is true...because he had absolutely no instinct to self soothe. I had to soothe him to get him calm enough and then get him to sleep before putting him to bed. I knew he was demanding but I just thought this was normal behavior, not realizing that he truly had difficulty with his emotions. Now I know it's all neurological and that it's not just a stubborn streak. This would have been helpful to know if the pediatrician took my complaints serious. I did research and found the 5 S's technique and it worked right away and I thought, WOW, I can maybe get some sleep now, and he can rest and not be exhausted. This was very helpful info that I was grateful to have, even if I didn't know the cause of all this behavior at the time.

When is it MORE than the TERRIBLE TWOS?

I remember asking this question, to myself, everyday. Liam started acting out emotionally and physically harming himself. In this picture you can see his bruise on his forehead from banging his head on his crib. He had a constant bruise on his head when he was 2-2.5 years old. People at grocery stores would notice and say "oh my, what happened?!" and it got to the point that I was scared that I would be blamed for this bruising. I kept thinking to myself, I know terrible twos are suppose to be terrible, but how terrible? I would ask his pediatricians and they would tell me that he wouldn't bang his head hard enough to damage himself, but I saw him when he was in that 'state of mind' and it was scary. You can't tell me that bruising your head isn't going to damage anything. My husband even thought about getting him a helmet, but I was against it because I didn't want to mask over the problem and let him keep banging his head, I wanted to fix the action. I ended up physically restraining him when he was full of rage for 2-4 hours, until he calmed down. In this picture, you will also see 'the face' he gives you when he's uncomfortable, confused, overwhelmed, and anxious. I just noticed this connection about 'the face' to emotional outbursts that would happen maybe right after, or hours after. I showed this to his teacher and today when he gives her 'the face' she notices and takes him out in the hallway to discuss his feeling. What a difference that has made in our lives. Less emotional outbursts today, and instead of tantrums with head banging, it's totally prevented and he hasn't had an episode in 7 months. His emotional outbursts are shorter and last maybe an hour, instead of 2-4 hours (sometimes it would be all day). Our lives have changed within this last year because I kept pushing with the doctors until I had him tested and he qualified for the Early-Intervention Program with CDSA, which then lead to Early-In Preschool Program transition. He was labelled "developmentally delayed in speech and social behavior, with behavior problems". He started speaking at the normal age but it was limited and 'made up' language. When he would say a word, he stuck with it, no matter if it was right or not. YahYow-water, KahKu-sucker, DahDooDoo-helicopter, DahDah-Rosey(our dog), Kye-car. His speech has come a long way, he has trouble saying words and you can tell he has to think for a minute about what he is going to say but his language sounds more like the word that the made up version. Preschool has been the best progress for him. ABA therapies, Play therapies, At home therapy visits, speech therapy (outside of school), none of this helped Liam at all...It wasn't until 3 weeks into Preschool that he had progress at school and engaged in activities. The teacher described him to have "Dr. Jekyll, Mr. Hyde" conflicts with himself. He would not let himself participate but you could see he wanted to. Before Preschool... When I dropped him off at day care for 4 hours (only to get him out and socialize) he would stand in the same spot that I left him and not move until I came to get him. Now he has one friend at school and participates in most activities with nothing holding him back, no internal conflicts.

some of Liam's behaviors that should have sparked interest and concerns in doctors:

• headbanging to the point of bruising
• "rage fits" that last 2-4 hours
• making up own language
• everything ending in a melt-down (we had 5 melt-downs a day)
• withdrawn and overwhelmed by other kids his age
• repeating the same question every 2 minutes after given an answer
• hard time with transition
• needs a very structured routine (only mommy fixes my breakfast, not daddy)
• When angry it escalated to RAGE
• Personality at school is different than that of the one at home (behavior problems at home, none at school)

I kept pursuing these issues because I had support from family and friends that dealt with special needs children and autism. Everyone kept reassuring me that this is not normal and to keep pushing the doctors until I find one that listens and explores more. I'm grateful for that support because it's easy to blame yourself and think that maybe you haven't given discipline enough or maybe you let him get away with things too long. But the people who supported me, knew that I wasn't a push over, and I had structure and routine. I know I asked myself many times "Have I done a terrible job? How could I have raised such a brat." I couldn't help but think it was my fault, but then his teacher suggested Asperger's in passing and I did research and came across a book by Tony Attwood, "The Complete Guide to Asperger's Syndrome" and there I read the first 2 chapters and found hope. It was like the book was written from a study of Liam! It explained every behavior and then gave instruction on how to address such behavior. It was such a relief to have explanation on why your child acts the way he does and to get an understanding of your child that will now lead you to building trust and security in our relationship. Now he trusts that I understand what he's going through and how to handle it.

Introducing myself and my family

My name is Jenn, I'm 29 years old and was on the road to becoming a graphic designer when my life took a turn I never planned on, having a family. I grew up working since I was 16 and went to college and planned out my whole career, little did I know that you can only plan so much of your life and that now I'm a stay at home mom (which is the hardest and most satisfying experience than any job that I've had) and wife to a soldier. I have an amazing husband who is in the Army and two wonderful kids. Liam who is 3 years and recently diagnosed with ASD, and Gwyneth who is 1 and has only been with her dad for 4 months before a year long deployment disrupted our lives. I guess I'm writing this for myself, and to help someone going through similar situations, and hopefully learning things from others. We have gone through so much in this last year, and all the while my husband has been living his life , the best he can, over-seas, in hostile territory. I thought of myself as independent my whole life ...until... before I knew it we have made a family of four and I depend on them for love, support, and encouragement. No matter how independent you are in the world, you always are dependent on your loved ones in one way or another. I never thought this until put in the situation of a deployment of my best friend and husband.

I have learned to never let doctors over-look your concerns for your children. If you have a question, you need to be persistant until you are satisfied with the answer, if you aren't, then find another doctor. I've gone through so many pediatricians until I recently found one that listens and explores your questions even if they don't know the answers, and refer you to someone that may.