Day 45

After I put Julia to bed I went to Ryan's room to kiss him good night. As I approached his door I could hear him crying. I walked inside and asked him what was wrong. He was pointing to his stuffed animals on his toy chest; he looked sad and worried. Apparently Phil had forgotten to put the stuffed animals in his bed before he left the room. I grabbed them for Ryan and placed them in his bed in the precise places he wanted them. He looked content.

Ryan is all about routines. Every night he goes to sleep with his music playing, his Cars night light on, and at least three stuffed animals in bed with him. His Mickey Mouse sleeps to the left of him, his Blues Clues dog sleeps to his right, and his little brown bear stays somewhere under his face or arm. We've learned these routines and memorized them and when he decides to change them, we relearn them. It is stressful, but not learning them leads to even more stress.

These are the routines and parental jobs that nobody else sees so it can be difficult for them to understand why Ryan does certain things, and even more difficult to understand why Phil and I make some of the decisions that we make. We've had four years of practice getting to know Ryan's strengths and challenges. We've learned from our mistakes, and we are still learning. Every decision we make happens after we first think "How will this affect Ryan?"

Over the years we've been judged and labeled as the "strict parents" in our family and amongst our friends. We're usually the ones to leave parties early so not to miss a bedtime, and not let our kids eat certain foods or participate in certain activities.

We've also been judged by strangers. We've endured the whisperings at restaurants when we've needed to let Ryan watch the portable DVD to keep occupied to avoid a meltdown waiting for his food. What the other diners don't realize is that while typical children can easily pass the time coloring, being forced to color for 20 minutes is torture for a child with fine motor difficulties. We've received plenty of annoyed and disapproving glances from onlookers while in line at the supermarket. What the other customers don't realize is that waiting in line or waiting a turn can be difficult for a child on the spectrum. While these things are embarrassing for us, they have also made us strong. We've become protective of our children and their feelings, maybe overprotective at times, but I prefer it that way. I'd like to think that this experience has also taught us to think first before we judge others.

Last summer we took our kids to Disneyland while out in California visiting family. We guessed the kids would last about 3-4 hours and we would be on our way. You can imagine our surprise when we were able to stay at the park for about 8 hours! We were also able to go on many rides, including the ones with a 30 minute or longer wait. This is because we had a deal going with Ryan. While in line he was allowed to keep his "binkie" in his mouth, but had to give it back to us when we got on the ride. (Ryan had just turned three and was having difficulty giving up the binkie, especially after seeing his sister with one.) During one of the line waits, I saw a young woman staring at Ryan. She had a look of disgust on her face. She turned to the guy with her and whispered in his ear. I could tell he was looking around for Ryan. When he couldn't find him, she pointed towards Ryan. They both had a little chuckle. It was like a knife through my heart that someone was laughing at my son. I didn't say anything to them, and at times regret my decision.

The next time you see someone having a difficult interaction with their child, before you say to yourself, "That mother/father has no idea how to be a parent", please have some compassion and give them the benefit of the doubt. Don't stare, don't laugh, and definitely don't point your finger!

DC

Day 44

Ryan's first overnight trip since we started the diet. We are up at my mom's house for the night. They were prepared with several items that Ryan can eat, and everything is working out fine so far. We made sure we packed all of his supplements, and Ryan took them with no problem this evening. He had several onlookers who clapped for him and he was proud!

Ryan's skin has improved greatly. Dr. Bock said that we need to "lubricate his body from the inside out". That is what the fatty acids and fish oils are doing. His skin is almost as soft and smooth as it was when he was a baby. He scratches a lot less than he used to, and his cheeks are red and blotchy on occassion rather than daily. We've noticed a lot of the same changes with Julia, who has dry skin issues as well. Once she realized how much attention Ryan gets during "supplement time" she started demanding medicine and vitamins. We give her omega-3 vitamins in the form of a gummy bear and she loves them. She is proud of her softer skin and when I ask her why her skin is so smooth she says because she takes her vitamins.

It was nice this weekend to see family that we don't get to see too often. They had nice things to say about Ryan's progress and because they haven't seen him in a while they noticed a big change. I saw the progress a lot in the beginning and now it seems as if things have hit a plateau. It is easy to forget how awful things used to get at times and I question if they were really all that bad or if it was "in our heads". When I hear a family member comment on how much he has changed it validates what we are doing and what we have done. I guess I have to get used to the fact that this "new" behavior is going to hopefully be the "norm".

DC

Day 43

Today we drove down to White Plains for a College Graduation party. Again, it was another party that both Dawn and I were able to enjoy. There was food there that Ryan could eat and we also brought extra food just in case. He did not ask for anything that he could not have and had a great time. He played with his sister and cousins and had a blast with the bubbles and water balloons. He even got wet and only asked once to change his clothes. The great part was that he used to be so sensitive to being wet that we would have to changes his clothes immediately or he would go into a complete melt down. While he did walk a little funny with the wet clothes he kept them on until they dried.

We got home late and he was so tired and cranky that he really gave us a hard time taking the medicine. But his skin is getting so much smoother and his melt downs are now age appropriate that we really can not complain.

PC

Day 42

Well the pizza that we were all worried about turned into a big nothing. We made his own pizza and he took three bites and wanted to watch a show. He never asked for the take out pizza. Even Julia only took a few bites and then went to watch the show with Ryan. We will have to try Chinese food to see if we have the same luck. He used to eat an entire order of fried dumplings if we let him!

Today he spent the entire day at Day care and we had to pack his own lunch. According to daycare he had no problems with the food and ate the whole helping of corn pasta. He came running into the house today to show me his new prize box toy. If he gets five stars on his chart then he gets to pick a small prize out of the prize box. He gets a star if he remains on the "happy" side of the behavior chart. It was always depressing for us to look at the chart before the diet and see all the other children with stars and Ryan having none. He would have several meltdowns a day and rarely receive a star. Today he received two stars and that gave him enough to get a prize. He is now sleeping with his small helicopter. While this is not his first prize out of the box, this was the first prize the he was truly happy and proud to have!

PC

Day 41

Happy Birthday Phil!

Ryan, Julia, and I were invited to Phil's job to join in the celebration for his birthday. Ryan did very well eating his GFCF cookies while everyone else had birthday cake. Prior to this diet he would have had a full-fledged meltdown if we told him he couldn't eat chocolate cake. But he was content eating his cookies.

Prior to that he had his second "interview" for a new school this fall, and the directors feel he will fit right in and accepted our application. One more thing to check off of our list of things to take care of to set up Ryan's schooling for September.

Phil thought we could go out to dinner at the Outback but at 4:30 the kids were "off the wall" and we thought it best to stay in for dinner. Ryan didn't have much of an appetite. We made turkey burgers and put his on GF toasted bread but he only ate about 1/3 of it. He was a bit cranky the rest of the evening and I'm thinking it may have been from something he ate earlier in the day.

We began him on another supplement tonight, a type of vitamin E. It is the 4th one that Dr. Bock suggested out of the 6 we took home. So combine these four with the three we were already doing prior to seeing Dr. Bock, and we're up to 7. It took over 10 minutes before just to prep all of his "medicines". Some are liquid and were added to his drink. The capsules were broken open and mixed with other foods.

We have a friend coming over for dinner tomorrow night. I think we might try our first take out pizza since we started the diet. We'll put Ryan's pizza in the oven and get him psyched about it and then maybe he won't feel so bad when he sees the box from the pizzeria. We'll let you know how it goes! Until then...

DC

Day 40

It is amazing to us that we have been at this for 40 days and looking back at all the progress it is nothing but amazing. On the drive home today Dawn and I both commented how calm they were in the back of the car and that they were sharing Ryan's snacks. Before this diet, the car ride home was always a stressful situation and sharing food was out of the question. We have come a long way and if you told me that 40 days ago this is were we would be, I would have thought that you were crazy.

Tonight for dinner was organic chicken, rice, and special ketchup. Which he ate well until he noticed Julia putting rice into her straw and thought that was too good to pass up! Vegetables have always been an issue with our children. Well, not an issue, they just do not eat them. Tonight Ryan wanted carrots. So I gave him one and thought that I would be finding the partially chewed carrot somewhere in the living room. However, this time it was different. He ate the one, then went into to refrigerator, took the rest of the container to his seat, and proceeded to eat the rest of the carrots. I do not think I have seen him eat this many vegetables since he was a little baby.

Like, I said, it has been 40 days and this diet is working wonders with Ryan. I can not imagine what the next 40 days will bring for him.

PC

Day 39

I'm so exhausted. I wanted to skip the blog tonight but I feel guilty not writing. So I'll make it short and comment on two new things today. First, I made GFCF french toast for the first time tonight and Ryan really enjoyed it. Second, I have been researching a school's responsibility to provide a special lunch for children on a particular diet. There are requirements that must first be met involving the child's doctor and the child's IEP. I'll elaborate once I have all of the information, and when I am better able to keep my eyes open. Goodnight.

DC

Day 38

We often ask the question why us? Why does Ryan have Autism? Why did none of the doctors pick up on this? Why is the diet working for us and not others? Why? Why? Why? It is often difficult to look past all of the things that we have to do for Ryan and look at the big picture. We have a little boy that is thriving, engaging, laughing, singing songs, and telling us stories. He is changing every day right in front of our eyes and we have the belief that he is going to get better. He will struggle with things that other children will never have to think about and he will fall but we will teach him how to get back up.

Thank you to all those that read this and for all of you who are going to help Ryan as he grows up.

PC

Day 37

What keeps me going...

Phil was reading Ryan a bedtime story. I entered his room to say goodnight, and when he saw me he hopped out of bed, ran up to me, gave me a hug, and said "I love you, mommy. Thank you for giving me my medicine." Heart melter!

I asked him if it makes him feel better, and he said, "yes." Then he added, "And I like getting a cookie for taking my medicine!" Heart melter, and a comedian!

DC

Day 36

Waiting for Benjamin

On most Saturdays Phil takes Ryan to the library. First Ryan returns last week's selections and then he browses through the videos and picks out one or two (they are usually about Thomas the Train). Finally, he chooses a book shelf in the children's section and randomly picks 2 or 3 books, and then proudly heads over to the counter to check out with the librarian. Today, one of his random book selections was called "Waiting for Bejamin - A Story about Autism" by Alexandra Jessup Altman.

I just read the book and it is a touching story, one that hits home. The book describes some of the emotional challenges (such as disappointment, frustration, embarrassment, and uncertainty) that occur in a home with an Autistic child from a sibling's point of view.

I often wonder what Julia's thoughts are but usually get interrupted with something else before I can finish a complete thought. At times her behavior can be unlike that of a typical two year old. I wonder if some of her unruly outbursts and rapid increases of independence are her reactions to our family dynamic, and her plead for attention. I'm embarrassed to say that we don't devote nearly as much of our time to Julia as we do Ryan. I feel awful about it, and guilty, and will work hard to set aside time this summer for her and I to do things together when Ryan is at school. She is only 2 and a half and wouldn't fully grasp the meaning of the book, but I can see myself checking it out again to share with her in another year or so.

It actually feels good to worry about Julia for a change, and maybe Ryan's "random" book selection wasn't so random after all.

DC