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
Monday, May 31, 2010
Sunday, May 30, 2010
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
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
Saturday, May 29, 2010
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
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
Friday, May 28, 2010
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
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
Thursday, May 27, 2010
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
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
Wednesday, May 26, 2010
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
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
Tuesday, May 25, 2010
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
DC
Monday, May 24, 2010
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
Thank you to all those that read this and for all of you who are going to help Ryan as he grows up.
PC
Sunday, May 23, 2010
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
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
Saturday, May 22, 2010
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
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
Day 35
Today Ryan started his OT and from the reports from Daycare, the session went well. Hopefully we get an official report from the OT evaluator as to how he did and what they worked on today.
Tonight we tried brown rice spaghetti for dinner. Since we arrived home so late we just made the whole pound for the family and not a separate dinner for the rest of the family. We have been starting to find ourselves just making GF/CF meals for everyone. It is a lot of time to prepare these meals and apparently daycare does not feed our children because the moment they walk in the door they must eat!
Ryan is taking his supplements a little better but each night we are having to find different ways for him to take the powder supplements. Until he learns to swallow a pill we are going to have to hide it in different foods. Tonight we hid the powder in soy ice cream.
PC
Tonight we tried brown rice spaghetti for dinner. Since we arrived home so late we just made the whole pound for the family and not a separate dinner for the rest of the family. We have been starting to find ourselves just making GF/CF meals for everyone. It is a lot of time to prepare these meals and apparently daycare does not feed our children because the moment they walk in the door they must eat!
Ryan is taking his supplements a little better but each night we are having to find different ways for him to take the powder supplements. Until he learns to swallow a pill we are going to have to hide it in different foods. Tonight we hid the powder in soy ice cream.
PC
Thursday, May 20, 2010
Day 34
Today we tried a new brand GF/CF cheese pizza for lunch. Ryan was not going to his therapeutic Nursery school and had to have lunch at his daycare facility. We were told that he like the pizza and ate most of the french bread and vegan cheese pizza for lunch.
We also received a call this evening from the person that is going to be giving Ryan his OT. When Ryan had is annual review Dawn was able to convince our school district to grant him OT twice a week for the remainder of the school year. The good part is that this person is able to be flexible and already has someone in Ryan's class at his daycare facility. Hopefully she will be able to meet with Ryan tomorrow.
With the end of the year coming so rapidly both Dawn and I are getting very stressed and we are all looking forward to the summer break.
PC
We also received a call this evening from the person that is going to be giving Ryan his OT. When Ryan had is annual review Dawn was able to convince our school district to grant him OT twice a week for the remainder of the school year. The good part is that this person is able to be flexible and already has someone in Ryan's class at his daycare facility. Hopefully she will be able to meet with Ryan tomorrow.
With the end of the year coming so rapidly both Dawn and I are getting very stressed and we are all looking forward to the summer break.
PC
Wednesday, May 19, 2010
Day 33
I sat down several times tonight to write today's blog but kept getting interrupted. It seemed like the kids fought about everything since I've picked them up from daycare... they fought over who was going to give daddy a flower, who was going to set the table, who was going to turn on the light, and so on.
I had every intention of venting and writing about how many things I'm trying to manage on my plate right now, and how difficult this is and how exhausted I am. Instead I need to recognize how blessed I am that my children are alive and well, and safe. As tough as things may seem, they could always be worse, and I'm grateful that I have this opportunity to be a mom.
DC
I had every intention of venting and writing about how many things I'm trying to manage on my plate right now, and how difficult this is and how exhausted I am. Instead I need to recognize how blessed I am that my children are alive and well, and safe. As tough as things may seem, they could always be worse, and I'm grateful that I have this opportunity to be a mom.
DC
Tuesday, May 18, 2010
Day 32
Meltdowns!
With all of the progress that Ryan has been making we sometimes forget that he is only 4 and he will still have his meltdowns. When we went to pick him up today his teacher told us that he was off today. He was fighting with his friends and that he was very upset, throwing his water bottle across the room and was having a melt down. We figured out that the afternoon snack was pretzels and we did not pack pretzels for him as a snack. He was not happy and it took about 40 minutes for him to calm down. We even went to vote for the school budget and he needed about 15 minutes in the car to calm down. But once he did he wanted to go and vote. He then told Dawn, who took Julia in with her, that he pulled the lever to vote today.
Even with all the progress and all of the positives that he has been having, we still have to be on the look out for issues. He is still taking him a lot longer to get over disappointments and he easily reverts to previous behaviors when he is upset. Hopefully with time he can learn new ways of dealing with disappointments.
On a positive note, we tried a GF/CF fish stick for dinner and he ate it with his special ketchup. It is a secret recipe of organic ketchup, probiotic, and the sugar companion. The sugar companion is a new supplement that is designed to curb the sweets and help the body break down carbohydrates. They are both a capsule but since he does not know how to take them we had to figure out a way for him to take these without tasting them (for they taste terrible!).
Hopefully tomorrow will be a better day for him.
PC
With all of the progress that Ryan has been making we sometimes forget that he is only 4 and he will still have his meltdowns. When we went to pick him up today his teacher told us that he was off today. He was fighting with his friends and that he was very upset, throwing his water bottle across the room and was having a melt down. We figured out that the afternoon snack was pretzels and we did not pack pretzels for him as a snack. He was not happy and it took about 40 minutes for him to calm down. We even went to vote for the school budget and he needed about 15 minutes in the car to calm down. But once he did he wanted to go and vote. He then told Dawn, who took Julia in with her, that he pulled the lever to vote today.
Even with all the progress and all of the positives that he has been having, we still have to be on the look out for issues. He is still taking him a lot longer to get over disappointments and he easily reverts to previous behaviors when he is upset. Hopefully with time he can learn new ways of dealing with disappointments.
On a positive note, we tried a GF/CF fish stick for dinner and he ate it with his special ketchup. It is a secret recipe of organic ketchup, probiotic, and the sugar companion. The sugar companion is a new supplement that is designed to curb the sweets and help the body break down carbohydrates. They are both a capsule but since he does not know how to take them we had to figure out a way for him to take these without tasting them (for they taste terrible!).
Hopefully tomorrow will be a better day for him.
PC
Monday, May 17, 2010
Day 31
Blood drawn... another thing to check off of our list! What a relief! He had two tests done: an Oxidative Stress Panel, and an Ion Profile. Phil said that Ryan did great. He wasn't too upset and he handled it well. There were lots of vials that needed to be filled but he did a good job, and of course afterwards he asked for his cookie that was promised to him last night and this morning! He was fine with fasting and we were lucky to get him in to get it drawn before 8am. Phil brought him to Saint Francis Hospital. We had a lot of difficulty finding a lab that would draw it for us. When we called Dr. Bock's lab they said they didn't open until 9. We felt that would be a long wait for Ryan and after numerous frustrating phone calls we out found St. Francis would do it and their lab opened at 7am.
I'm so grateful that Phil took the morning off from work to bring him. It wasn't a great day for me to take off, but if I had to I would have. But truthfully, I'm not sure I could handle another session of him screaming "Please stop, I don't like this!" To top it off, he then had to go to his pediatrician for his annual check up. I had no idea he was going to have to get shots! The pediatrician gave him one of his tetnus boosters and his MMR vaccine. Instead of getting four vaccines at age 5, she likes to split it up and give him 2 this year and 2 next year. But again, Phil said that Ryan did really well. He cried for one of them because it hurt (probably the MMR) but the booster didn't really phase him. Phil had an extra lollipop with him and once he saw that he was content! Bribery works! (or it at least makes us parents feel better about making them go through something painful and scary- it's their consolation prize and rids our guilty conscience!)
DC
I'm so grateful that Phil took the morning off from work to bring him. It wasn't a great day for me to take off, but if I had to I would have. But truthfully, I'm not sure I could handle another session of him screaming "Please stop, I don't like this!" To top it off, he then had to go to his pediatrician for his annual check up. I had no idea he was going to have to get shots! The pediatrician gave him one of his tetnus boosters and his MMR vaccine. Instead of getting four vaccines at age 5, she likes to split it up and give him 2 this year and 2 next year. But again, Phil said that Ryan did really well. He cried for one of them because it hurt (probably the MMR) but the booster didn't really phase him. Phil had an extra lollipop with him and once he saw that he was content! Bribery works! (or it at least makes us parents feel better about making them go through something painful and scary- it's their consolation prize and rids our guilty conscience!)
DC
Day 30
Today we added a new supplement from Dr. Bock's list. This is now the 5th supplement and we have four more sitting in the shopping bag just waiting to be opened. We haven't added a new one in about a week so we figured we'd give it a try. This one is called Sugar Companion. I didn't know much about it so I looked it up and found that it is supposed to help reduce cravings for sweets. This was a big problem for Ryan before we started this diet and continues to be an issue, although it has diminished somewhat. I'm not sure how long it takes to work its way into the system but it didn't take effect today. He's been craving salty foods the past few days and that continued today. He asked for chips countless times, to the point where we gave in and let him have 2nd and 3rd helpings. It was out of control and by the afternoon we were super frustrated. He also asked several times for lollipops and cookies.
Phil's mom visited for lunch and Ryan was very talkative (he started some of the conversations) and made lots of eye contact. She noticed the recent improvements he's been making, even a few new ones after just seeing him last week for his birthday.
For dinner I made a GFCF pizza from scratch. He ate a little bit but wasn't crazy about it; the crust was bumpy looking and he said it had potatoes on it! It didn't help that Julia took one bite and made an announcement about how yucky it was. At Nature's Pantry today I found a GFCF frozen pizza and purchased it to try out. I would love to find pizza that Ryan is content with. I miss eating pizza at home, but can't bring myself to ordering it and then telling him he can't have it. Same goes with Chinese food. We used to order Chinese take out at least 2 times a month. Since we started this diet we haven't ordered out at all.
Most of the homemade pizza got wrapped up and put into the fridge and he ended up having toast before bed. We wanted him to have a full stomach before his 12 hour fast for his bloodwork. We spent time warning him about the morning and telling him that he was going to wake up, go to the doctor, and then eat breakfast. He asked if he could have cookies and we said yes. So we had him practice saying the routine aloud: wake up, go to the doctor, eat a cookie.
It was a very stressful day for me worrying about him going for bloodwork in the morning.
DC
Phil's mom visited for lunch and Ryan was very talkative (he started some of the conversations) and made lots of eye contact. She noticed the recent improvements he's been making, even a few new ones after just seeing him last week for his birthday.
For dinner I made a GFCF pizza from scratch. He ate a little bit but wasn't crazy about it; the crust was bumpy looking and he said it had potatoes on it! It didn't help that Julia took one bite and made an announcement about how yucky it was. At Nature's Pantry today I found a GFCF frozen pizza and purchased it to try out. I would love to find pizza that Ryan is content with. I miss eating pizza at home, but can't bring myself to ordering it and then telling him he can't have it. Same goes with Chinese food. We used to order Chinese take out at least 2 times a month. Since we started this diet we haven't ordered out at all.
Most of the homemade pizza got wrapped up and put into the fridge and he ended up having toast before bed. We wanted him to have a full stomach before his 12 hour fast for his bloodwork. We spent time warning him about the morning and telling him that he was going to wake up, go to the doctor, and then eat breakfast. He asked if he could have cookies and we said yes. So we had him practice saying the routine aloud: wake up, go to the doctor, eat a cookie.
It was a very stressful day for me worrying about him going for bloodwork in the morning.
DC
Saturday, May 15, 2010
Day 29
Today we had a good day with him and the diet with supplements. We went to a party this afternoon and he was very content to eat his food. The only thing that he really wanted was chocolate covered strawberries. But they had fresh strawberries and he was content. However, we did have to give him some more potato chips to get his mind off of the chocolate covered strawberries. He was great at the party, no meltdowns, and played great with the other kids. His behavior was excellent and he really was able to interact with others at the party. Another party that Dawn and I could enjoy without having to run after him constantly.
He is taking the supplements but we have been using OJ to help get him to take them easier. However, OJ is high in sugar and Phenols and we have to start getting him off these two. Now that we have him on the GF/CF diet, it is time to start the sugar and Phenol battle. We will keep you informed.
Today I took Ryan to the A&P (which is not a very friendly store for GF/CF products) to do a regular food shopping. It is the biggest food store that is closest to our house. We have switched to a lot of Organic products, one of those being Organic chicken. We can all now taste the difference with the chicken. There was none on the shelf so we asked the butcher. He was able to look in the back and get us a package. He asked us about the taste of the chicken and we told him that we could taste the difference, especially the kids. We also started talking about Ryan's diet since Ryan asked if this was his or Julia's chicken. As I was talking about the GF/CF diet and autism, the person behind me interrupted us and asked us if he heard us correctly that Ryan was diagnosed with Autism. He then called over what I found out to be his son and daughter-in-law and told them that this little boy was diagnosed with Autism. Which at this point Ryan said that he was not a little boy he was Ryan. This blew the couple away. They asked how old Ryan was an he responded that he was four and that he had a pirate party but not today. The asked what types of therapy was in and what medications he was taking that made such a big difference. I told them the he was granted OT, which did not start yet and that he was only on the GF/CF diet and supplements. No medicine. To say they were shocked was an understatement.
We talked some more about the Diet and they were amazed that I brought Ryan to the store and Ryan chimed in that we went to the Library first. I found out that they were visiting and that they left their son, four and a half at the house and that this was their break. Apparently their son was much farther down the spectrum then Ryan and was difficult to bring to different places. They wanted to know about what we were doing and how we found out about the diet. I told them to start with Dr. Bock's book Healing the New Childhood Epidemics, to find a DAN! doctor, and research the diet. I told them that this diet does not always work, but for us it has been a total life saver with Ryan. I shared a few stories about Ryan, how he would act, re-act, and how he would eat before we started the diet and they just nodded their head in agreement. I forgot to tell them about this blog but I hope that I gave them a good start. At the end of our 20 minute conversation (Ryan was telling me that it was time to go and getting antsy sitting in the cart) they thanked me and the mom started to cry. I wish that Dawn had been with me for she would have been such a better resource for her and a better source of comfort. I hope that I gave them what so many parents of children with Autism need: Hope.
PC
He is taking the supplements but we have been using OJ to help get him to take them easier. However, OJ is high in sugar and Phenols and we have to start getting him off these two. Now that we have him on the GF/CF diet, it is time to start the sugar and Phenol battle. We will keep you informed.
Today I took Ryan to the A&P (which is not a very friendly store for GF/CF products) to do a regular food shopping. It is the biggest food store that is closest to our house. We have switched to a lot of Organic products, one of those being Organic chicken. We can all now taste the difference with the chicken. There was none on the shelf so we asked the butcher. He was able to look in the back and get us a package. He asked us about the taste of the chicken and we told him that we could taste the difference, especially the kids. We also started talking about Ryan's diet since Ryan asked if this was his or Julia's chicken. As I was talking about the GF/CF diet and autism, the person behind me interrupted us and asked us if he heard us correctly that Ryan was diagnosed with Autism. He then called over what I found out to be his son and daughter-in-law and told them that this little boy was diagnosed with Autism. Which at this point Ryan said that he was not a little boy he was Ryan. This blew the couple away. They asked how old Ryan was an he responded that he was four and that he had a pirate party but not today. The asked what types of therapy was in and what medications he was taking that made such a big difference. I told them the he was granted OT, which did not start yet and that he was only on the GF/CF diet and supplements. No medicine. To say they were shocked was an understatement.
We talked some more about the Diet and they were amazed that I brought Ryan to the store and Ryan chimed in that we went to the Library first. I found out that they were visiting and that they left their son, four and a half at the house and that this was their break. Apparently their son was much farther down the spectrum then Ryan and was difficult to bring to different places. They wanted to know about what we were doing and how we found out about the diet. I told them to start with Dr. Bock's book Healing the New Childhood Epidemics, to find a DAN! doctor, and research the diet. I told them that this diet does not always work, but for us it has been a total life saver with Ryan. I shared a few stories about Ryan, how he would act, re-act, and how he would eat before we started the diet and they just nodded their head in agreement. I forgot to tell them about this blog but I hope that I gave them a good start. At the end of our 20 minute conversation (Ryan was telling me that it was time to go and getting antsy sitting in the cart) they thanked me and the mom started to cry. I wish that Dawn had been with me for she would have been such a better resource for her and a better source of comfort. I hope that I gave them what so many parents of children with Autism need: Hope.
PC
Friday, May 14, 2010
Day 28
Today we kept Ryan home because he woke up with a 101.6 fever. I stayed home with him figuring that I could get my work done. I never thought that I would say this but Ryan would not stop talking! He spoke more today then ever. When Dawn called to check on him he would get another receiver and start talking to Dawn. He would be engaging in conversation and answer all of her questions. It was unreal. Even Dawn noticed when she got home that he was talking more.
Ryan colored pictures for Dawn today and could not wait for her to get home to show her the pictures. He even asked if he could make pictures for Grandma and Nonna. These are things that he never did and we are starting to think that it is due to the new supplement Probiotic. He has been taking that for a few days and that is all we have really changed in the last few days. The diet is going so well, Ryan is not even tempted to try non-GF/CF food. We were having lunch together and he asked me for a sandwich with his bread not Daddy's. It is amazing.
Hopefully he will start to feel better and we are looking forward to the continued progress with Ryan.
PC
Ryan colored pictures for Dawn today and could not wait for her to get home to show her the pictures. He even asked if he could make pictures for Grandma and Nonna. These are things that he never did and we are starting to think that it is due to the new supplement Probiotic. He has been taking that for a few days and that is all we have really changed in the last few days. The diet is going so well, Ryan is not even tempted to try non-GF/CF food. We were having lunch together and he asked me for a sandwich with his bread not Daddy's. It is amazing.
Hopefully he will start to feel better and we are looking forward to the continued progress with Ryan.
PC
Thursday, May 13, 2010
Day 27
While the diet seems to be working great his skin stills is so dry and scratchy. We had hoped by this time we would be seeing a change in his skin. Some people suggest removing food high in Phenols. We seem to be getting a good handle on the GF/CF food and he is doing such a great job with the new diet. Having a new set of food that we have to watch for is going to be another challenge.
Ryan is doing such a great job with the food he has even told other people that he can not have certain foods. Today in daycare they were having Goldfish for a snack. The teacher was in such a rush getting the snacks out for the other children she forgot and gave Ryan a plate of Goldfish. He went up to the teacher and told her that he can not have Goldfish and that he wanted his special snacks. Even at four years old, he is recognizing what types of food that he wants and can have. We often wonder if he recognizes the effect that the diet is having on himself and what he was before the diet.
We have also been noticing that his memory is greatly improving. He is hearing songs on the car radio and singing them. He never did this before. He is also telling us the songs that they are singing in school, which is also a first. We attribute this to the diet and also the supplements that Dr. Bock had prescribed for Ryan.
The only bad thing today was that I had to pick him up early from day care because of the croup. He was coughing badly and was withdrawing from others. He has been doing so well, we decided that we were not going to push it. His regular doctor prescribed a liquid steroid to help with the coughing and it seems to help. Hopefully tomorrow will be a better day for him.
PC
Ryan is doing such a great job with the food he has even told other people that he can not have certain foods. Today in daycare they were having Goldfish for a snack. The teacher was in such a rush getting the snacks out for the other children she forgot and gave Ryan a plate of Goldfish. He went up to the teacher and told her that he can not have Goldfish and that he wanted his special snacks. Even at four years old, he is recognizing what types of food that he wants and can have. We often wonder if he recognizes the effect that the diet is having on himself and what he was before the diet.
We have also been noticing that his memory is greatly improving. He is hearing songs on the car radio and singing them. He never did this before. He is also telling us the songs that they are singing in school, which is also a first. We attribute this to the diet and also the supplements that Dr. Bock had prescribed for Ryan.
The only bad thing today was that I had to pick him up early from day care because of the croup. He was coughing badly and was withdrawing from others. He has been doing so well, we decided that we were not going to push it. His regular doctor prescribed a liquid steroid to help with the coughing and it seems to help. Hopefully tomorrow will be a better day for him.
PC
Wednesday, May 12, 2010
Day 26
Ryan turned 4 today! Many people proudly wore their Ryan Express t-shirts today. We stood out all around my school today and it was awesome to feel that kind of support!
His teachers said he enjoyed his GFCF brownies with his friends at school today. Unfortunately his cough has not improved. We took him to the pediatrician and she said it is croup and put him on a steroid medication.
Phil and I have both noticed that Ryan's memory seems improved. He is singing the words to songs that he was never able to sing before and just in general when we tell him something it doesn't go in one ear and out the other. It's nice to hear him singing songs on the way to or the way home from school!
My brother wanted to take everyone out to dinner tonight. We looked at some of the menus of local restaurants that specifically have GF menu items. We considered Uno's and Bugaboo Creek before settling on Outback Steakhouse. I was a little worried because I knew Ryan would want the french fries, but the menu specifically said that the fries are not GF. I ordered him grilled chicken and asked the waitress about the fries. She assured us that they are indeed GF because they will fry them in a separate frier and use oil designated only for GF items. So we ordered the fries (to be honest I was going to order them anyways). There was no way we were going to get him to understand why the rest of the kids were eating fries and he wasn't. All 9 of us were wearing our Ryan Express t-shirts and several employees and patrons asked us about them. I took several pictures and will post them on The Ryan Express Facebook page.
DC
His teachers said he enjoyed his GFCF brownies with his friends at school today. Unfortunately his cough has not improved. We took him to the pediatrician and she said it is croup and put him on a steroid medication.
Phil and I have both noticed that Ryan's memory seems improved. He is singing the words to songs that he was never able to sing before and just in general when we tell him something it doesn't go in one ear and out the other. It's nice to hear him singing songs on the way to or the way home from school!
My brother wanted to take everyone out to dinner tonight. We looked at some of the menus of local restaurants that specifically have GF menu items. We considered Uno's and Bugaboo Creek before settling on Outback Steakhouse. I was a little worried because I knew Ryan would want the french fries, but the menu specifically said that the fries are not GF. I ordered him grilled chicken and asked the waitress about the fries. She assured us that they are indeed GF because they will fry them in a separate frier and use oil designated only for GF items. So we ordered the fries (to be honest I was going to order them anyways). There was no way we were going to get him to understand why the rest of the kids were eating fries and he wasn't. All 9 of us were wearing our Ryan Express t-shirts and several employees and patrons asked us about them. I took several pictures and will post them on The Ryan Express Facebook page.
DC
Tuesday, May 11, 2010
Day 25
The GFCF brownies are in the oven cooking. We're sending them to daycare with Ryan so that he can celebrate his birthday with his friends at school. They smell good and I even added some mini chocolate chips (GFCF chocolate chips, of course).
Ryan did well taking his medicine tonight. He's developed a routine already. He has to sit in one particular spot on the kitchen counter. And he must take it in a syringe with me holding his chin. And after each small push of the syringe he swallows, takes a sip of water, and then continues to take the medicine. I tried to give it to him tonight in the opening between our family room and kitchen so that he could continue watching a show (another bedtime ritual) but he said, "No mama, I have to take it here" and he proceeded into the kitchen to his spot at the counter, where I had to hoist him up.
And we were able to get a third day of stool samples. We packaged everything up according to the directions, and FedEx is picking up the box tomorrow. I was getting nervous that we weren't going to get the third sample, and the lab has to receive it within five days of the first sample. So tonight was our last chance, and he pulled through for us! What a good boy!
Tomorrow is Ryan's birthday; 4 years old! Many friends and family members will be wearing our official t-shirt of The Ryan Express.
DC
Ryan did well taking his medicine tonight. He's developed a routine already. He has to sit in one particular spot on the kitchen counter. And he must take it in a syringe with me holding his chin. And after each small push of the syringe he swallows, takes a sip of water, and then continues to take the medicine. I tried to give it to him tonight in the opening between our family room and kitchen so that he could continue watching a show (another bedtime ritual) but he said, "No mama, I have to take it here" and he proceeded into the kitchen to his spot at the counter, where I had to hoist him up.
And we were able to get a third day of stool samples. We packaged everything up according to the directions, and FedEx is picking up the box tomorrow. I was getting nervous that we weren't going to get the third sample, and the lab has to receive it within five days of the first sample. So tonight was our last chance, and he pulled through for us! What a good boy!
Tomorrow is Ryan's birthday; 4 years old! Many friends and family members will be wearing our official t-shirt of The Ryan Express.
DC
Monday, May 10, 2010
Day 24
Let's talk diet, annual review meeting, and then the mushy stuff!
Ryan didn't want to eat dinner tonight. He remembered we had a leftover piece of cake in the fridge and he spent about an hour whining for it. Even my two-year old commented that he was "cranky". On the way home he told me he wanted soup for dinner. So I made him soup with some GF broth and GF elbow pasta. But as soon as I put the bowl down in front of him, he didn't want it. We offered him several other options but he kept whining for the cake. Julia finished dinner and ate her cake, and the tears poured out. I felt so bad watching him cry. He was craving sweets! I didn't want to give in and make him think he was going to get cake every time he refused to eat dinner and cried. So I told him if he took his medicine he could have his cake. He immediately got up and drank the cod liver oil, and then enjoyed the cake. We still can't pinpoint what is going on with his skin. He came home with some severe scratch marks, red blothes, and of course his cheeks were red. I wish we didn't have to wait until July to get his test results to see if there is something evident causing an allergic reaction.
We attended Ryan's annual review today. We're happy to report that he will maintain the current services he is receiving, and then some. He will continue his program through the summer, and for the fall his program was increased from 1/2 a day to a full day (5 hours). He will also continue with speech services, and they added O/T and group counseling.
I was very touched by yesterday's blog. I received several emails from people commending me for what I do for Ryan. The truth is I wouldn't be able to do even half of it without the support of my husband, family, friends, and colleagues. And let's not forget the wonderful people who help Ryan all day long while we're at work. All of you motivate and inspire us. We're so grateful for the people in our lives. Thank you for helping us help our little boy!
DC
Ryan didn't want to eat dinner tonight. He remembered we had a leftover piece of cake in the fridge and he spent about an hour whining for it. Even my two-year old commented that he was "cranky". On the way home he told me he wanted soup for dinner. So I made him soup with some GF broth and GF elbow pasta. But as soon as I put the bowl down in front of him, he didn't want it. We offered him several other options but he kept whining for the cake. Julia finished dinner and ate her cake, and the tears poured out. I felt so bad watching him cry. He was craving sweets! I didn't want to give in and make him think he was going to get cake every time he refused to eat dinner and cried. So I told him if he took his medicine he could have his cake. He immediately got up and drank the cod liver oil, and then enjoyed the cake. We still can't pinpoint what is going on with his skin. He came home with some severe scratch marks, red blothes, and of course his cheeks were red. I wish we didn't have to wait until July to get his test results to see if there is something evident causing an allergic reaction.
We attended Ryan's annual review today. We're happy to report that he will maintain the current services he is receiving, and then some. He will continue his program through the summer, and for the fall his program was increased from 1/2 a day to a full day (5 hours). He will also continue with speech services, and they added O/T and group counseling.
I was very touched by yesterday's blog. I received several emails from people commending me for what I do for Ryan. The truth is I wouldn't be able to do even half of it without the support of my husband, family, friends, and colleagues. And let's not forget the wonderful people who help Ryan all day long while we're at work. All of you motivate and inspire us. We're so grateful for the people in our lives. Thank you for helping us help our little boy!
DC
Sunday, May 9, 2010
Day 23
Mother Warriors
Jenny McCarthy wrote a book about her son's battle with Autism and referred to some of the other mothers as warriors in this battle. Well Dawn fits this profile exactly. She is Ryan's warrior. She is relentless in her pursuit to help Ryan. I mentioned in an earlier post that our original appointment with Dr. Bock was on November 8, 2010. Yet, Dawn managed to get Ryan appointment on May 6, 2010.
Dawn tracked down Dr. Sydney Baker, one of the founders of DAN (Defeat Autism Now!). He was one of the doctors that help to train Dr. Bock. She somehow found his home phone number. She spoke to his wife for a little while and then she gave Dawn Dr. Baker's cell phone number. When she called the number he answered! They spoke for a while and he was able to get Ryan in next week. He asked for Dawn's email address so he could email the forms that we would need to fill out for the appointment. The only bad part was that his office was in Sag Harbor on Long Island. Instead of just taking the appointment Dawn called Br. Bock's office and left a message telling them the story. That afternoon Dr. Bock's office called and said that they had a cancellation and could fit Ryan in on Thursday. While we know that the office had a cancellation we had a feeling that given the situation and the fact that Dawn was talking to his mentor we moved to the top of the list to be rescheduled!
If you have been reading the blog or following the Ryan Express face book page you will have noticed that Dawn is a huge driving force in helping Ryan. She has set up our team to do the Autism walk, designed T-shirts, developed this blog, set up appointments, read every book on Autism, started Ryan on the GF/CF diet, found every store in our area that has food for Ryan, looked into all of the supplements that Ryan will need on the new diet, contacted his schools to be sure Ryan would be able to stay on his diet, and is in the process of setting up a Not-for-Profit organization in Ryan's name to help those that can not afford to see DAN doctors or buy food for the GF/CF diet.
Like I said Dawn is Ryan's Warrior and on this Mother's Day Ryan is very lucky to have Dawn as his Mother! Happy Mothers Day Dawn.
PC
PS The cake was fantastic and a big hit!
Jenny McCarthy wrote a book about her son's battle with Autism and referred to some of the other mothers as warriors in this battle. Well Dawn fits this profile exactly. She is Ryan's warrior. She is relentless in her pursuit to help Ryan. I mentioned in an earlier post that our original appointment with Dr. Bock was on November 8, 2010. Yet, Dawn managed to get Ryan appointment on May 6, 2010.
Dawn tracked down Dr. Sydney Baker, one of the founders of DAN (Defeat Autism Now!). He was one of the doctors that help to train Dr. Bock. She somehow found his home phone number. She spoke to his wife for a little while and then she gave Dawn Dr. Baker's cell phone number. When she called the number he answered! They spoke for a while and he was able to get Ryan in next week. He asked for Dawn's email address so he could email the forms that we would need to fill out for the appointment. The only bad part was that his office was in Sag Harbor on Long Island. Instead of just taking the appointment Dawn called Br. Bock's office and left a message telling them the story. That afternoon Dr. Bock's office called and said that they had a cancellation and could fit Ryan in on Thursday. While we know that the office had a cancellation we had a feeling that given the situation and the fact that Dawn was talking to his mentor we moved to the top of the list to be rescheduled!
If you have been reading the blog or following the Ryan Express face book page you will have noticed that Dawn is a huge driving force in helping Ryan. She has set up our team to do the Autism walk, designed T-shirts, developed this blog, set up appointments, read every book on Autism, started Ryan on the GF/CF diet, found every store in our area that has food for Ryan, looked into all of the supplements that Ryan will need on the new diet, contacted his schools to be sure Ryan would be able to stay on his diet, and is in the process of setting up a Not-for-Profit organization in Ryan's name to help those that can not afford to see DAN doctors or buy food for the GF/CF diet.
Like I said Dawn is Ryan's Warrior and on this Mother's Day Ryan is very lucky to have Dawn as his Mother! Happy Mothers Day Dawn.
PC
PS The cake was fantastic and a big hit!
Saturday, May 8, 2010
Day 22
Ryan attended a birthday party today and did great in regards to food. He sat at the table and watched kids grabbing at pretzels and cheese doodles. He didn't reach out his hand at all. I could tell he wanted some, but he didn't touch them. He looked at me first and asked if it was okay for him to eat them. I told him I would give him a special snack and he was fine eating something different. That is basically what happened for lunch and birthday cake. When they were passing out the pieces of ice cream cake he announced that he wanted his special cake. I wonder if he is okay with all of this because he recognizes that it makes him feel better. Wow! I am so proud of him!
We are celebrating Ryan's birthday in conjunction with Mother's Day tomorrow (he'll be 4 on Wednesday). Our immediate family will be here to help us celebrate. I made a GFCF chocolate cake and vanilla frosting. Ryan was excited to watch me make it and is looking forward to his pirate birthday party. The cake looks like a typical birthday cake but it isn't as tall; the cake cooked on the flatter side. Now I just hope it tastes okay and everyone doesn't mind eating it. I figured on his birthday he shouldn't need to have something different from everyone else and ask for his "special" cake. We're all going to eat Ryan's cake.
DC
We are celebrating Ryan's birthday in conjunction with Mother's Day tomorrow (he'll be 4 on Wednesday). Our immediate family will be here to help us celebrate. I made a GFCF chocolate cake and vanilla frosting. Ryan was excited to watch me make it and is looking forward to his pirate birthday party. The cake looks like a typical birthday cake but it isn't as tall; the cake cooked on the flatter side. Now I just hope it tastes okay and everyone doesn't mind eating it. I figured on his birthday he shouldn't need to have something different from everyone else and ask for his "special" cake. We're all going to eat Ryan's cake.
DC
Friday, May 7, 2010
Day 21
New foods. Tonight I made GFCF pizza for the first time. Granted, I bought the dough premade, but I've been wanting to try it to see if Ryan would eat it so I thought tonight was a good night to try it out. I topped it with fresh tomato sauce and a Vegan tofu "mozzarella" cheese. The cheese melted and got all bubbly and tasted really close to the real thing. Ryan walked through the door and immediately noticed the smell of the pizza cooking. And he said, "Mommy, you're making pizza?" So I felt good that it at least smelled like real pizza. And he ate it and I think he liked it. He asked for a second helping. He certainly didn't eat as much as he would have prior to this diet but he ate it. And we ate it too. Well, not all of us. Julia took one little bite and announced that she didn't like it. She has no filter! But it was okay because it didn't stop him from eating it.
Next task was to make a GFCF cake because we are celebrating Ryan's birthday on Sunday. I had good intentions to do it tonight, but it was a very exhausting and emotional day and I need to walk away from the computer and rest. Tomorrow is another day!
DC
Next task was to make a GFCF cake because we are celebrating Ryan's birthday on Sunday. I had good intentions to do it tonight, but it was a very exhausting and emotional day and I need to walk away from the computer and rest. Tomorrow is another day!
DC
Thursday, May 6, 2010
Day 20
Dr. Bock
Today was our appointment with Dr. Bock. Originally this appointment was for November 8th but Dawn managed to get Ryan an appointment today. I will talk about how she managed that one in another posting.
It was a crazy day but one well worth the time. The only bad part of the appointment was the fact that we had to have Ryan fast to get blood work. This never ended up happening. Now that his body is accepting the GF/CF food he has regained his appetite. So by 7:45 AM he was getting very upset telling us that he was hungry and that he wanted his special toast! The appointment lasts over 4 hours and the blood drawing does not occur until the end of the appointment. There was no way we were going to be able to keep Ryan from eating until noon.
Dr. Bock seems like a very nice man and he was impressed with the progress that Ryan has been making with the diet. We described what Ryan was like before the diet and what he was like now. Ryan did great with the appointment. He sat and played in the office as Dr. Bock went over the huge intake packet with us. We even had Dawn's parents meet us at the appointment just in case Ryan could not handle the appointment. Ryan did amazing. He watched the phone company repair a downed wire outside the building. He even waved to the worker in the cherry picker fixing the line. He was such a trooper.
Dr. Bock was also impressed with the fact that we read his book and that Dawn was able to share the progress that Ryan has made on the diet. The doctor shared with us that it is a good sign that in such a short amount of time Ryan has made such great progress. He even commented that Ryan had good eye contact! This was probably the first time that anyone has ever said that about Ryan.
After the appointment was over they handed us several test kits to collect more blood, stool, and urine to get tested. The directions are unreal and we feel completely over whelmed with all the stuff that we learned and that we have to now do to help Ryan. Finding a lab that will draw the blood needed and test for the specific items that he wants is a huge task. Dawn is still sorting though all the directions and going crazy finding a place that will do these tests and at a time that we can have Ryan fast but not have him go crazy about wanting to eat.
The last part of the appointment was going over all the supplements that they want Ryan to take. This is a huge undertaking and the directions alone will make your head spin. Take this now, this later, this with water, this with food, this twice a day, this needs to be in the frig, this can not be in the frig and the list goes on and on.
As over loaded with information as we are, we do feel much better that we are now under the care of a doctor and not his book. While the book was a huge help and a great resource, having a human being talking to us and a plan of action is so reassuring. We are hopeful that with the supplements, the continued diet, the OT, continued speech and whatever else he wants us to try we are going to see even more progress by his next birthday! Today we received what has been missing in a while: Hope.
PC
Today was our appointment with Dr. Bock. Originally this appointment was for November 8th but Dawn managed to get Ryan an appointment today. I will talk about how she managed that one in another posting.
It was a crazy day but one well worth the time. The only bad part of the appointment was the fact that we had to have Ryan fast to get blood work. This never ended up happening. Now that his body is accepting the GF/CF food he has regained his appetite. So by 7:45 AM he was getting very upset telling us that he was hungry and that he wanted his special toast! The appointment lasts over 4 hours and the blood drawing does not occur until the end of the appointment. There was no way we were going to be able to keep Ryan from eating until noon.
Dr. Bock seems like a very nice man and he was impressed with the progress that Ryan has been making with the diet. We described what Ryan was like before the diet and what he was like now. Ryan did great with the appointment. He sat and played in the office as Dr. Bock went over the huge intake packet with us. We even had Dawn's parents meet us at the appointment just in case Ryan could not handle the appointment. Ryan did amazing. He watched the phone company repair a downed wire outside the building. He even waved to the worker in the cherry picker fixing the line. He was such a trooper.
Dr. Bock was also impressed with the fact that we read his book and that Dawn was able to share the progress that Ryan has made on the diet. The doctor shared with us that it is a good sign that in such a short amount of time Ryan has made such great progress. He even commented that Ryan had good eye contact! This was probably the first time that anyone has ever said that about Ryan.
After the appointment was over they handed us several test kits to collect more blood, stool, and urine to get tested. The directions are unreal and we feel completely over whelmed with all the stuff that we learned and that we have to now do to help Ryan. Finding a lab that will draw the blood needed and test for the specific items that he wants is a huge task. Dawn is still sorting though all the directions and going crazy finding a place that will do these tests and at a time that we can have Ryan fast but not have him go crazy about wanting to eat.
The last part of the appointment was going over all the supplements that they want Ryan to take. This is a huge undertaking and the directions alone will make your head spin. Take this now, this later, this with water, this with food, this twice a day, this needs to be in the frig, this can not be in the frig and the list goes on and on.
As over loaded with information as we are, we do feel much better that we are now under the care of a doctor and not his book. While the book was a huge help and a great resource, having a human being talking to us and a plan of action is so reassuring. We are hopeful that with the supplements, the continued diet, the OT, continued speech and whatever else he wants us to try we are going to see even more progress by his next birthday! Today we received what has been missing in a while: Hope.
PC
Day 19
Ryan had a bad day. One of his teachers called me to tell me that he had several meltdowns and he was acting differently than he has been the last two weeks. She said he was whiny and cried because he finished his snack and wanted more. We haven't given him anything new in the past 24 hours so I'm not sure why this happened. He flipped out on the car ride home because Phil had to stop for gas and he wouldn't let Ryan get out of the car. He then cried even harder when Phil drove a different way home due to his detour to the gas station. The only thing I can think of is that he deviated slightly from the diet the day before when he grabbed Julia's bag of pretzels instead of his own. He had 2 or 3 mini pretzels before we stopped him. Note to self...we need to come up with a color code system or something similar so that he doesn't accidentally eat someone else's food. At home we can just switch Julia over to some of the GF snacks (although she is not taking a liking to them the way Ryan has). But at school he's going to have other kids' food around him all of the time. Who knows... maybe he snuck more non-GFCG food that we don't know about.
On a positive note, he took his dose of cod liver oil much better last night. We mixed one part oil with one part water. This helped to dilute it and not be so oily. We then gave it to him in two different syringe sessions. This is the first day that he hasn't spite some of it out. I don't know if it is because he is getting used to the taste or because we diluted it, but I'm going to keep diluting it in the future!
Off to Dr. Bock tomorrow morning! Our November 8th appointment got moved up to this week...Miracle! Dr. Bock is a specialist, a DAN! (Defeat Autism Now!) doctor.
DC
On a positive note, he took his dose of cod liver oil much better last night. We mixed one part oil with one part water. This helped to dilute it and not be so oily. We then gave it to him in two different syringe sessions. This is the first day that he hasn't spite some of it out. I don't know if it is because he is getting used to the taste or because we diluted it, but I'm going to keep diluting it in the future!
Off to Dr. Bock tomorrow morning! Our November 8th appointment got moved up to this week...Miracle! Dr. Bock is a specialist, a DAN! (Defeat Autism Now!) doctor.
DC
Tuesday, May 4, 2010
Day 18
As we were driving home today we realized that we have not had takeout since we started this GF/CF diet. We have to find places for us to order out food in case we run into times when making food at home is not a possibility. Ryan is doing so well on his diet that we are constantly getting reports of what a different child he has become and it is amazing.
Today Ryan was re-tested for OT and we have to wait for the official report. However, as Dawn was talking to the evaluator she was telling us that Ryan did such a great job of doing the activities. When she was interviewing his teachers they were telling her stories about how Ryan would not sit still, would not listen, or follow directions. When she was evaluating Ryan she was thinking that everyone was lying to her. Ryan did a fantastic job. He held her hand and walked her over to table where they could work. He followed directions and stayed on task for the testing. Before this diet Ryan had a very limited attention span. To hear that he sat through the entire test and followed directions is nothing short of miraculous. While he does have some areas that will need to be addressed with some OT therapy, he is showing improvement since his last OT evaluation six months ago.
PC
Today Ryan was re-tested for OT and we have to wait for the official report. However, as Dawn was talking to the evaluator she was telling us that Ryan did such a great job of doing the activities. When she was interviewing his teachers they were telling her stories about how Ryan would not sit still, would not listen, or follow directions. When she was evaluating Ryan she was thinking that everyone was lying to her. Ryan did a fantastic job. He held her hand and walked her over to table where they could work. He followed directions and stayed on task for the testing. Before this diet Ryan had a very limited attention span. To hear that he sat through the entire test and followed directions is nothing short of miraculous. While he does have some areas that will need to be addressed with some OT therapy, he is showing improvement since his last OT evaluation six months ago.
PC
Monday, May 3, 2010
Day 17
No thanks, I am good!
The diet is going well and Ryan seems to be adjusting to the GF/CF food. We received a report today that Ryan did a great job during circle time at his daycare. This used to be a huge issue. He never wanted to sit during circle time and would destroy this event at daycare. His teacher told us that he is listening much better and that he is much calmer since he has been on the new diet.
Ryan is taking the cod liver oil a little better but we still have to force the issue with him. However, tonight Julia decided that she wanted some of the medicine. She hates being left out and tonight she announced that she wanted some of Ryan’s medicine. So Dawn gave her a plastic syringe with a small dose of cod liver oil. She put a little in her mouth, made a very funny face, and gave Dawn back the syringe. When Dawn asked if she wanted the rest Julia replied "No thanks, I'm good!"
PC
The diet is going well and Ryan seems to be adjusting to the GF/CF food. We received a report today that Ryan did a great job during circle time at his daycare. This used to be a huge issue. He never wanted to sit during circle time and would destroy this event at daycare. His teacher told us that he is listening much better and that he is much calmer since he has been on the new diet.
Ryan is taking the cod liver oil a little better but we still have to force the issue with him. However, tonight Julia decided that she wanted some of the medicine. She hates being left out and tonight she announced that she wanted some of Ryan’s medicine. So Dawn gave her a plastic syringe with a small dose of cod liver oil. She put a little in her mouth, made a very funny face, and gave Dawn back the syringe. When Dawn asked if she wanted the rest Julia replied "No thanks, I'm good!"
PC
Sunday, May 2, 2010
Day 16
Another fabulous day! He sat with me for an hour playing different board games, including Chess. He actually said, "Mama, will you play with me?" Of course he didn't play the way adults play, but he made up the game as we went along and was content simply moving the pieces around. He took the balls for the Chinese Checkers game and arranged them into different patterns. He got a really good fine motor workout in! I've never seen him sit still for one whole hour and stay entertained playing games. At one point I leaned over and kissed his head. Normally he would squirm away from me, and then wipe his head where I touched it. This time he looked at me and said, "Thank you, Mama." How lucky am I to get my Mother's Day gift a week early? He melted my heart. What a gentle soul!
Ryan's appetite has returned. He ate well all day, and did not have a meltdown when he asked for something he wasn't allowed to have and we didn't give it to him. In fact, he already knew he wasn't allowed to have it, but he half-heartedly asked already knowing the answer. And it wasn't like he was devastated or felt deprived he couldn't have it. He drank the rice milk again today, but we tried pear juice and he didn't like it. For dinner he ate a hot dog (no bun), an entire boneless chicken breast, and a bowl of rice. He's still not interested in vegetables, but we'll take whatever victories we can get.
DC
Ryan's appetite has returned. He ate well all day, and did not have a meltdown when he asked for something he wasn't allowed to have and we didn't give it to him. In fact, he already knew he wasn't allowed to have it, but he half-heartedly asked already knowing the answer. And it wasn't like he was devastated or felt deprived he couldn't have it. He drank the rice milk again today, but we tried pear juice and he didn't like it. For dinner he ate a hot dog (no bun), an entire boneless chicken breast, and a bowl of rice. He's still not interested in vegetables, but we'll take whatever victories we can get.
DC
Saturday, May 1, 2010
Day 15
Today was a great day. For breakfast he ate 2 organic marshmallow bars, one waffle, two pieces of toast, and two cups of rice milk. Not a bad breakfast! Today was also our first true test of the diet. We had a first Holy Communion party today and we knew that most of the food at the party was not GF/CF. Dawn packed his food and off we went.
At the party there were pasta, meatballs, chicken francaise, rolls, manicotti, cake, M&M's, and a huge hero sandwich shaped in a cross. There were potato chips, butter pretzels, and cheese doodles for snacks. Before the diet this would have been right up Ryan's alley. He would have eaten for the entire four hours we were at the party and whined for more when we told him that was enough. Today was a much different story.
He did ask for some things but we simply told him no and offered him something else that we brought. Dawn had packed organic GF/CF chicken nuggets, organic french fries, and organic ketchup for his dinner and he ate it without complaint. He did not go up to the buffet table and beg/demand for food. He ate all of his food and continued playing with his sister and the rest of the cousins. We were so proud of him!
It was also great to observe Ryan interacting with others. The hosts of the party had brought arts and crafts for all the kids to play with to help pass the time. In the past, Ryan wanted nothing to do with these types of activities. We used to have to bring a portable DVD player and let him watch a show in the corner to calm him down. Today was a much different story. He sat and participated in the arts and crafts. There were small foam shaped objects, like sail boats, surf boards, and such that had a small piece of paper on the back that had to be peeled off. Ryan sat down in the middle of the group and peeled these little pieces of paper off for over 30 minutes. He never once asked for help. He then stuck these foam shapes onto a little picture frame. He kept showing his art work to some of the high school aged cousins and he was the one that was engaging the conversation. When asked what he was doing, he said that he was making a gift for Mommy. Even when Dawn had to step away to change Julia he waited for her to be done and ran up to her to show her what he had made!
At one point during the party, Dawn was talking to one of her relatives and was telling her about Ryan's diagnosis of Autism. The woman was shocked and told Dawn that the doctor must have been pulling her leg. Ryan looked fine. He was talking to people, interacting with his cousins, playing appropriately, sharing toys, and did not have any melt downs. This was the first family gathering that we did not have to be running around after Ryan and we were able to enjoy the party.
When it was time for cake we thought that we would be in trouble. We had been there for four hours and both of the kids were getting tired. One of the people at the party had made GF/CF brownies for her son and made a big enough batch to share. Ryan had two brownies and cut up strawberries. He asked for cake once but Dawn told him no and again offered him an alternative. He did ask for a second brownie. Once he finished, he just got down and continued to play. It was amazing. The fact that he was the only person at the table not eating cake did not bother him at all! In the past it would have been a nightmare if he did not have what everyone else was having, especially cake! Like I wrote at the top of the blog today was a great day!
PC
At the party there were pasta, meatballs, chicken francaise, rolls, manicotti, cake, M&M's, and a huge hero sandwich shaped in a cross. There were potato chips, butter pretzels, and cheese doodles for snacks. Before the diet this would have been right up Ryan's alley. He would have eaten for the entire four hours we were at the party and whined for more when we told him that was enough. Today was a much different story.
He did ask for some things but we simply told him no and offered him something else that we brought. Dawn had packed organic GF/CF chicken nuggets, organic french fries, and organic ketchup for his dinner and he ate it without complaint. He did not go up to the buffet table and beg/demand for food. He ate all of his food and continued playing with his sister and the rest of the cousins. We were so proud of him!
It was also great to observe Ryan interacting with others. The hosts of the party had brought arts and crafts for all the kids to play with to help pass the time. In the past, Ryan wanted nothing to do with these types of activities. We used to have to bring a portable DVD player and let him watch a show in the corner to calm him down. Today was a much different story. He sat and participated in the arts and crafts. There were small foam shaped objects, like sail boats, surf boards, and such that had a small piece of paper on the back that had to be peeled off. Ryan sat down in the middle of the group and peeled these little pieces of paper off for over 30 minutes. He never once asked for help. He then stuck these foam shapes onto a little picture frame. He kept showing his art work to some of the high school aged cousins and he was the one that was engaging the conversation. When asked what he was doing, he said that he was making a gift for Mommy. Even when Dawn had to step away to change Julia he waited for her to be done and ran up to her to show her what he had made!
At one point during the party, Dawn was talking to one of her relatives and was telling her about Ryan's diagnosis of Autism. The woman was shocked and told Dawn that the doctor must have been pulling her leg. Ryan looked fine. He was talking to people, interacting with his cousins, playing appropriately, sharing toys, and did not have any melt downs. This was the first family gathering that we did not have to be running around after Ryan and we were able to enjoy the party.
When it was time for cake we thought that we would be in trouble. We had been there for four hours and both of the kids were getting tired. One of the people at the party had made GF/CF brownies for her son and made a big enough batch to share. Ryan had two brownies and cut up strawberries. He asked for cake once but Dawn told him no and again offered him an alternative. He did ask for a second brownie. Once he finished, he just got down and continued to play. It was amazing. The fact that he was the only person at the table not eating cake did not bother him at all! In the past it would have been a nightmare if he did not have what everyone else was having, especially cake! Like I wrote at the top of the blog today was a great day!
PC
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