You gotta love Jenny! She gets to the bottom of what everyone else is hiding. I have learned so much from her and also from other mothers who have sons that are recovering (not cured!!) and are doing great. I was having a really hard time with things a while back and then, out of the blue, I get an email from my angel that I never knew existed! She had seen my blog off of another friends’ blog and had contacted me. I truly believe in the power of God and that He sent her to me! She has a son that is recovering and will go to Kindergarten next year! Amazing!! She is my encouragement because she has been through it and knows that there IS hope! Thank you so much, Lauryn. First, for reaching out to me, and secondly, for your wisdom, compassion, and inspiration! The world needs more people like you!
Riley had an appointment with our DAN! Doctor this week and also had the backscratch test. My mom went with us in case I needed her. I really enjoyed her being there with us. Riley’s back was too small for the whole test, so they just did the food portion of the test. The nurse took a sharpie and divided his back into three columns and then around 40 dots for 40 sticks on his back. It didn’t hurt him but he didn’t like the fact that people were messing with him and he couldn’t see what was going on. We were to stay in the room and wait for whelps on his back to pop up. He had fun playing in the room and the 15 minutes went by quicker than the 50 minutes that we waited to get into a room. It wouldn’t have bothered me but when we walked in, that same nurse was hanging around the reception area doing NOTHING!! Then all of a sudden she’s busy for 50 minutes? Come on!
Anyways, he is intolerant to dairy but peanut butter is okay and I am happy with that! The doctor said from one of his other tests, he should be allergic to lots more and they were probably chemicals or environmental factors. The main thing that he was worried about was the way that yeast was affecting Riley’s body. Read this article to learn more about that. This is the first time that we had been back to the Dan! Dr. since finishing all the tests so he was ready for Riley to start on anti-fungal medication. Two prescriptions later and 2 more supplements, I am hoping that we will tell a difference when the yeast starts leaving his body. I have heard GREAT things! Of course, we do have to take sugar out of his diet. Just more stuff he can’t eat.:(
Last night, Alan and I spent time with the kids. Kylie was talking so much about her trip and her day at school. Sometimes she IS Chatty Kathy. Riley was doing great things, too. When I asked him where everyone was he would tell me and point to them. POINT!! Are you kidding me? This is something he hasn’t done since Easter 2005!! He had a rough couple of days after things were injected into him with the test, but he was back to his new self last night and I was getting good conversation out of him.
The first thing that Kylie said when she got into the van at the airport was, “I want to see Riley’s back scratch!” I guess Alan had told his family and she had overheard. I love how she interprets things sometimes! I’ll post pictures of their trip this weekend!
Saturday, April 19, 2008
Monday, April 14, 2008
Update On Riley Roo
I haven’t written about Riles in a long time and I have so much information everyday to document. Like that he has been on the GFCF Diet for almost 3 months and is doing great! We haven’t had pizza or McDonalds since the first of January! That is huge!! When I think about all the times that I talked to a mom who had started the diet and told me great things about it, and I thought that we just couldn’t do it, I cringe. I thought that Riley was THE pickiest eater in the world! There was no way that he was going to eat food from Whole Foods or places off the internet. We seriously wasted TWO YEARS on that negative thinking!! I even had a mom tell me “RIley looks like my little boy BEFORE we got him on the diet. He just looks spaced out and in his own little world.” Thank you, Angela! That is seriously what I needed to hear. After that conversation, and many talks with my Autism-guru friend, Kendra, who said to change the things he would eat with ones that were GFCF, I took the plunge in January and switched some things FOR good!
The first thing that I took out of his diet was food additives and preservatives. Those goldfish and fruit roll ups were making him crazy! He would want a whole meal of those things! When I took them away, it was like he went into withdrawal. No kidding. He craved the stuff. It was like living with an addict coming down from a binge. I still can’t take him to the store or any supercenter for that matter. I am sticking and he is much better for being off of that poison!!! I added lots of GFCF snacks like animal crackers and things from an online store (crazy expensive!) and that’s all he ate for a while. Better than nothing!
Next, I switched his bacon and pepperonis for all natural and NO nitrates or BHA/BTA. Instead of getting the microwave bacon that cooks up crispy in seconds, we had to get a kind at Whole Foods called Applegate Farms and cook it like they did in the old days, in a pan on the stove. It took more time but he liked it just as much. He is now totally off of bacon. His choice.
He still loves pepperonis and I have only found one acceptable form of these. They are Applegate Farms and they are the size of softballs. When I first introduced them to him he looked at me like, “seriously?” He ate them and still eats them. He will ask me for “pepperoni pizza!” and that is what he gets!
Next I found Glutanos which is an acceptable form of Cheerios. He will eat those for breakfast. Now he will also eat wheat-free waffles which I am finding in more and more places. Kroger Signature Stores has a big section and I find almost everything except meat and chicken there.
Some days he would not want his new foods so would fill up on Juicy Juice which is supposed to be 100% juice, but who knows, right? Then I got smart and started giving him Organic Pear Juice which I know is approved but costs an arm and a leg for 2 glasses worth. So, we recently added Organic Lemonade which he squints when he drinks it, but it is cheap, comes in gallons, and doesn’t fill him up so he eats more.
He loves homemade french fries and will eat Bell & Evans chicken fingers. He mainly wants PB&J now for every meal! I got GFCF bread which stays in the freezer and takes some work not to make it crumbly, and organic peanut butter and organic strawberry jam. He LOVES his pb&j and sometimes wants it for breakfast on the way to school. He likes me to cut it in triangles and eats every last bite!
Other things that he likes are hot dogs (without the bun) and fruit leathers (sticky but real fruit made into a strip) This morning he ate waffles with peanut butter on them. He will try new things if I tell him to take ONE bite about a million times. I’m learning that he needs to be coaxed and will do it for me.
He still will not eat fruits or vegetables or any mixtures like spaghetti or anything with a weird texture. We are working on it and I see him trying new things before Christmas. Once his little gut is healed, he will be a new man and want new things, I just know it!
We just received allergy test results and he is highly intolerant to dairy. So, definatly no dairy for him which he cringes at anyway. I used to sneak milk into his juice, too because I thought that he needed the calcium. UGH! So, we are going back to the DAN! Doctor for a back scratch test in the middle of April and that will tell us exactly what foods he is intolerant of. I hope it’s not peanut butter or jelly!
We have seen less stimming and more focus from Riley being on the diet. Once you teach him something, he can learn it quick if he wants to. If he doesn’t, he will file it away and bring it back out when HE wants to. He has got a smart mind, the trick is just getting it all out! Sometimes I think that I am the only one that can do this, but then I see things he has learned from school and it makes me so happy!
We have also seen less fits. We made the mistake of letting him have queso on spring break and we saw signs IMMEDIATELY that we should not have done that at all! The fits and uncontrollable crying made Alan and I see that this is what we used to live with. We don’t want to go back!!
So, that’s just a little something that has been going on in our little world. Riley is turning out to be a great artist and I love the interaction that I get from him daily. It’s not fun to be ignored by your son. People just don’t get it that that’s what is going on when your child has autism. Sometimes he didn’t even look at me, much less listen to what I was saying. Now we can have some sort of conversation going on. I am thankful for that!
Hopefully, I will write more about RIley every week. He does something everyday that makes us smile! I couldn’t imagine life without Riley!
The first thing that I took out of his diet was food additives and preservatives. Those goldfish and fruit roll ups were making him crazy! He would want a whole meal of those things! When I took them away, it was like he went into withdrawal. No kidding. He craved the stuff. It was like living with an addict coming down from a binge. I still can’t take him to the store or any supercenter for that matter. I am sticking and he is much better for being off of that poison!!! I added lots of GFCF snacks like animal crackers and things from an online store (crazy expensive!) and that’s all he ate for a while. Better than nothing!
Next, I switched his bacon and pepperonis for all natural and NO nitrates or BHA/BTA. Instead of getting the microwave bacon that cooks up crispy in seconds, we had to get a kind at Whole Foods called Applegate Farms and cook it like they did in the old days, in a pan on the stove. It took more time but he liked it just as much. He is now totally off of bacon. His choice.
He still loves pepperonis and I have only found one acceptable form of these. They are Applegate Farms and they are the size of softballs. When I first introduced them to him he looked at me like, “seriously?” He ate them and still eats them. He will ask me for “pepperoni pizza!” and that is what he gets!
Next I found Glutanos which is an acceptable form of Cheerios. He will eat those for breakfast. Now he will also eat wheat-free waffles which I am finding in more and more places. Kroger Signature Stores has a big section and I find almost everything except meat and chicken there.
Some days he would not want his new foods so would fill up on Juicy Juice which is supposed to be 100% juice, but who knows, right? Then I got smart and started giving him Organic Pear Juice which I know is approved but costs an arm and a leg for 2 glasses worth. So, we recently added Organic Lemonade which he squints when he drinks it, but it is cheap, comes in gallons, and doesn’t fill him up so he eats more.
He loves homemade french fries and will eat Bell & Evans chicken fingers. He mainly wants PB&J now for every meal! I got GFCF bread which stays in the freezer and takes some work not to make it crumbly, and organic peanut butter and organic strawberry jam. He LOVES his pb&j and sometimes wants it for breakfast on the way to school. He likes me to cut it in triangles and eats every last bite!
Other things that he likes are hot dogs (without the bun) and fruit leathers (sticky but real fruit made into a strip) This morning he ate waffles with peanut butter on them. He will try new things if I tell him to take ONE bite about a million times. I’m learning that he needs to be coaxed and will do it for me.
He still will not eat fruits or vegetables or any mixtures like spaghetti or anything with a weird texture. We are working on it and I see him trying new things before Christmas. Once his little gut is healed, he will be a new man and want new things, I just know it!
We just received allergy test results and he is highly intolerant to dairy. So, definatly no dairy for him which he cringes at anyway. I used to sneak milk into his juice, too because I thought that he needed the calcium. UGH! So, we are going back to the DAN! Doctor for a back scratch test in the middle of April and that will tell us exactly what foods he is intolerant of. I hope it’s not peanut butter or jelly!
We have seen less stimming and more focus from Riley being on the diet. Once you teach him something, he can learn it quick if he wants to. If he doesn’t, he will file it away and bring it back out when HE wants to. He has got a smart mind, the trick is just getting it all out! Sometimes I think that I am the only one that can do this, but then I see things he has learned from school and it makes me so happy!
We have also seen less fits. We made the mistake of letting him have queso on spring break and we saw signs IMMEDIATELY that we should not have done that at all! The fits and uncontrollable crying made Alan and I see that this is what we used to live with. We don’t want to go back!!
So, that’s just a little something that has been going on in our little world. Riley is turning out to be a great artist and I love the interaction that I get from him daily. It’s not fun to be ignored by your son. People just don’t get it that that’s what is going on when your child has autism. Sometimes he didn’t even look at me, much less listen to what I was saying. Now we can have some sort of conversation going on. I am thankful for that!
Hopefully, I will write more about RIley every week. He does something everyday that makes us smile! I couldn’t imagine life without Riley!
Saturday, April 05, 2008
Just The Facts, Maam
A while back I ordered puzzle piece pins for the men in my family to wear on their lapels. Since then, I have read that the “puzzle” is a controversial sign for Autism and that some people are unhappy with it. I am not one of those people, however, because sometimes I do feel that Riley is just a little puzzle that we are trying to figure out.
Anyways, I have been keeping a card from the pins in my jewelry box that states facts on Autism and such. I just got it out and looked at it and it has the facts that you see everywhere, “1 in 150 children are diagnosed, 1 in 94 boys” We all know these facts by now. What I wasn’t really aware of, was the amount of private funding that Autism receives. I will list them here, but first, I want to state that out of all these diseases, I am not saying that because my son has Autism, it is more important than any other disease or disability out there. We have dealt with cancer, alzheimer’s, diabetes, ADHD, etc. in our family and they are all horrible in their own ways. I am just shocked at how more people are affected by Autism, yet there is less funding. What is up with that? It’s almost like, “Oh, they have Autism. Well, there’s no hope for that person so we are only going to pay for therapy, and, oh yeah, it’s only the therapy that we choose in our network, and, oh yeah, it’s 50 miles from your house but near your zip code, and, oh yeah, we are just going to deny coverage and see you squirm!!!!!” Can you tell that I have insurance issues? Here’s the chart:
Leukemia:
Affects 1 in 25,000/Funding: $310 million
Muscular Dystrophy:
Affects 1 in 20,000/Funding: $175 million
Pediatric AIDS:
Affects 1 in 8,000/Funding: $394 million
Juvenile Diabetes:
Affects 1 in 500/Funding: $130 million
AUTISM:
Affects 1 in 50/Funding: $15 million
Ridiculous! These are facts from 2005 and I have researched to see if they have changed with no luck. These are still listed on autismspeaks website. Funding and research seriously needs to catch up and I’m excited to see so many blogger moms and dads out there to make people aware of what’s going on! Yea bloggers!! Keep it up because I learn something from each one of you!!
Here’s a picture that Riley drew on the whiteboard yesterday. Can’t the world just be rainbows and sunshine?
Anyways, I have been keeping a card from the pins in my jewelry box that states facts on Autism and such. I just got it out and looked at it and it has the facts that you see everywhere, “1 in 150 children are diagnosed, 1 in 94 boys” We all know these facts by now. What I wasn’t really aware of, was the amount of private funding that Autism receives. I will list them here, but first, I want to state that out of all these diseases, I am not saying that because my son has Autism, it is more important than any other disease or disability out there. We have dealt with cancer, alzheimer’s, diabetes, ADHD, etc. in our family and they are all horrible in their own ways. I am just shocked at how more people are affected by Autism, yet there is less funding. What is up with that? It’s almost like, “Oh, they have Autism. Well, there’s no hope for that person so we are only going to pay for therapy, and, oh yeah, it’s only the therapy that we choose in our network, and, oh yeah, it’s 50 miles from your house but near your zip code, and, oh yeah, we are just going to deny coverage and see you squirm!!!!!” Can you tell that I have insurance issues? Here’s the chart:
Leukemia:
Affects 1 in 25,000/Funding: $310 million
Muscular Dystrophy:
Affects 1 in 20,000/Funding: $175 million
Pediatric AIDS:
Affects 1 in 8,000/Funding: $394 million
Juvenile Diabetes:
Affects 1 in 500/Funding: $130 million
AUTISM:
Affects 1 in 50/Funding: $15 million
Ridiculous! These are facts from 2005 and I have researched to see if they have changed with no luck. These are still listed on autismspeaks website. Funding and research seriously needs to catch up and I’m excited to see so many blogger moms and dads out there to make people aware of what’s going on! Yea bloggers!! Keep it up because I learn something from each one of you!!
Here’s a picture that Riley drew on the whiteboard yesterday. Can’t the world just be rainbows and sunshine?
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