Monday, August 30, 2010

Progress??

Well, we have been doing the GFCF diet for a couple weeks now. The question is: Is it worth the hassle? Can I tell a difference? The short answer would be: YES! We have been very constant with the diet change besides some exceptions here and there. We want those exceptions to just be once a week. (if that) It is not always that easy though. Suppers at home are easy to control and make GFCF friendly. And, we eat at home most of the time. However, it's things like have the 5 roast beef sandwiches for $5 coupon at Arbys. Sitting down and everyone eating, than realizing Luke's not supposed to be eating it! For some reason, I knew in my head that he could have Subway (which is what I wanted) so, we headed to Arby's. Yeah, I know. Go figure!!

Grandma Yarbrough's birthday party was a couple weeks ago. I made a regular vanilla cake and cut it to make a flip flop. So, there were extra pieces of cake around the house. Which, of course, the kids munched on. Then, at the party, Luke had a large piece of cake. Geez!! The next morning, he was terrible! He was past the high functioning autism child he is and down to the 'typical' autism child you imagine. That Sunday, he was so cranky and out of sorts that he stayed home with Kent from church. People asked where he was and I just said he's sick. Which in my mind, he was. So, we're learning as we go. I got some lactose free cheese slices, which is not casein free and not on his diet, but it's the closest that I found at the store. I've taken ham slices and one slice of cheese cut up and rolled it in 2 corn tortillas. That's been in his lunch box a few times and he likes it. He doesn't seem to have any behavior changes with it. So, it might be a keeper in his diet. We will see.

I'm seeing a difference. Other people are seeing a difference. (he's communicating more) I can really tell when he has something that's not good for him!! :~) I don't think he'd be functioning in middle school as well without this change. I'd really hate to see him go through all these changes without the diet now. We are sticking with it. After school, the kids want to stop at Wendy's and get a frosty. Or McDonald's and get a $1 sundae. So far, it's Sonic with a slushy once in a while. Or home where I know I can find something safe. This journey is a bit rocky, but no one said it would be easy.

Friday, August 27, 2010

Just A Bit Tired...

Have you read this book before? It is one of my favorite children's books. "Sometimes I like to curl up in a ball, so no one can see me because I'm so small." Do you ever feel like that? I know that I am not alone in that feeling. We have all been there. Stress over kids, bills, work, even what's for dinner some times! I am an outgoing person. I love people. To meet new people. To help people. To talk with people. But, when it comes to conflict or feeling overwhelmed, I just clam up. I know this stems from my childhood. I know it but it's just a part of who I am.

"I find somewhere soft, somewhere cozy and small... And that's where I like to curl up in a ball."



Of course, that is not always the best thing to do. I realize that just because I put off that problem, it doesn't go away. The bills are still there. The kids are still hungry. (again!!) The job stuff will be there tomorrow. And, I still have to advocate for what's best for my kids no matter what a pain in the booty I become to the schools.


Where does that leave me? And maybe you? Do you see yourself in any of this? My Hope is that tomorrow will be better. For the Lord knows where this Journey is taking me and He knows my tomorrows. He has been with me thus far, He's not leaving me now! My Faith is that I don't walk alone. If the Lord has his eyes on the sparrow, I know that He is there with me. But, yes, I do get tired. I just want some one else to handle everything. I do believe that I am here on this Earth to learn many lessons. They are not easy ones. If they were, how would I grow? But, my 'somewhere' soft, cozy, and small is in God's Everlasting Arms. Isaiah 40:29-31



"He gives strength to the weary and increases the power of the weak,
Even youths grow tried and weary, and young men stumble and fall;
But those who Hope in the Lord will renew their strength,
They will soar on wings like Eagles,
They will run and not grow weary,
They will walk and not be faint."



We all stumble. We all fall. We all cry. But, even as I type this it's a lot easier to put "we" then it is to put "I". So, let me try again... I stumble. I fall. I cry. But ~ I also HOPE.

Saturday, August 21, 2010

Grateful...


Yep, it's midnight. Yeah, I've already went to bed once. I was laying there talking to God again. About the day...the week...what's going to happen. And He seemed to tell me to slow down ~ Breathe. Just stop for a moment ~ and be thankful. To appreciate the blessings He has already given me. Remember the song about Counting Your Blessings One by One? Remember the saying about God opening window when the door is closed? Sometimes I get busy looking for a ladder to get up to the window ~ that I don't Thank God for the window until much later.


Breathe...


James 1:17 "Every good gift and every perfect gift is from above"


Usually when I think of this verse, I think of motherhood or about Jesus. What is more perfect than a screaming, beautiful bundle of joy? Or to have Jesus die on a cross for me? But tonight when I think of this, my heart and mind opens to my other good gifts from above. The blessings in my life or the windows that were cracked. I am thankful that this new diet for Luke seems to be giving me my son back. I am thankful that my Dad is no longer in pain and can watch over Luke. I am thankful for wonderful teachers who have loved my kids during the day. I am thankful for friends that want what is best for me, even though it's not always the easy route. (and will tell me!) I am thankful for my health. I wasn't even near the borderline diabetes number! I am thankful for my job because it may not be the best ~ but it is best for my kids. I am thankful for my family. Family is not always the ones you are born with, but the ones you make memories with. I am thankful to be living here, where the beauty around me reminds me of my Creator. The mountains. The rivers. The lakes. The Eagle soaring above us. I am very grateful for my life. This journey that I am on has it's ups and it's downs. But, I am learning. I know that God has it figured out even if I don't and for that ~ I am grateful.
"You can complain because roses have thorns, or you can rejoice because thorns have roses." ~Ziggy (comic strip)

Tuesday, August 17, 2010

Life is the journey...

Let's start off with school. It starts on Thursday. Luke is less than thrilled. He's nervous like all of the other new sixth graders starting at a different school. Tonight was the meet your teacher and get your schedule night. Luckily, he does have a nice home base teacher. She was Joey's favorite teacher last year. Then, the bad news. He knows one other person in the class. She is actually Faith's best friend's sister. So, I know that she is a sweet girl. However, I know he'd like to have a guy in class just as much as she'd like to have a girl in class. The assistant principal has come up with some kind of pass where he'll be able to go and see his friends. I am willing to give it a try. Luke is feeling very overwhelmed, which is normal. Hopefully, in another week, Luke will be not just okay ~ but happy. Joey is happy because he has friends in his pod and he's starting band. Faith is happy because she has her best friend in her class and the teacher she wanted. So, we are praying for a good year.


We did get Luke's blood tests results back. One of the things that was super high was something called Alkaline Phosphatase. When I looked it up I read that it's when the liver, bile ducts, or gallbladder are not functioning properly or blocked, the enzyme is released into the blood stream. (it goes back to the gut) Another thing that was very high was his Eosinophils level. This is one of the five major disease fighting white blood cells that controls inflammation. This tends to be on the higher side of normal for people with asthma but Luke's was beyond the 'normal' range. (what is his body fighting so hard for?) He also had protein in his urine which is a sign of his kidney function. (that gut area again) Of course, according to the doctor the labs are fine. But if one of the normal ranges are 30 - 200 and my son is 309 ~ that shows to me that something needs changed. I am not a doctor but it looks to me that Luke's kidneys and liver are not processing things correctly. So, even though the doctor pointed out there is no proof for the GFCF diet to help autism, I am still going in that direction.


In the two weeks that we've been doing it, I've already seen a difference and so has other people. His ears are not red and his rash has gotten smaller. He is with us a lot more and his alone time has gotten smaller. Last week, Luke spent the night at my in law's house and she noticed how he was out and talking to them so much more. Yes, his diet has slipped. He had one slice of pizza at a church function. But we made him eat before he went so he would only have one piece. I think Kent took them and got a donut a couple days ago, but it was one smaller one. (he usually wants an apple fritter) So, I know there will be times when he wants to be like everyone else. And ~ seriously, if he does this for a lifetime ~ you have to leave room for things your not supposed to have. But, hopefully, if he stays on the diet for the majority of the time ~ his body will learn to handle the mishaps once in a while. After all, life is not the destination. Life is the journey getting there...

Saturday, August 14, 2010

Out of my hands

I feel that music can touch you everyday in your life. Sometimes just hearing a song can change your frame of mind, give you hope, or make you cry. This is one of my favorite songs. It has helped me through alot. I just wanted to share. I hope you listen to the words ~ and it can touch your heart and bring you hope as well.

Thursday, August 12, 2010

The Path Of IEP's



The Individualized Education Program...

Luke started speech and occupational therapy when he was 4 years old. He had an IEP going into kindergarten. They wanted to start him out with no support because although they'd like the kids to write their name and know their ABC's ~ it's technically not required. Just let him fail for several months, then give him some support. That didn't go over well with me. It didn't make sense not to try and actually help him when it's clear that he's already a slow learner. I had to call in support from Springdale's special education department to go over the school's plan, but I did get him services starting in kindergarten. Every year there's more testing of some kind. Another IEP. New teachers. The worry of getting the right or wrong teacher. Now, Luke starts not only another school year ~ but another school. Middle School. More responsibilities. More kids. More classes. More teachers. More bullies. And yes, we did another IEP at the end of 5th grade to get ready for all these changes.




One of the things that his classroom teacher, speech teacher, head of special ed, and myself wanted and put into his IEP was that he get placed with his two friends. Luke has had two friends since second grade. They are all each other has for the day. All three a bit odd in their own ways. Fitting together well. All they needed to do was put them in the same pod so they could at least have one of their classes together. Just one.....seriously is that too much? Maybe have PE together where they could laugh and have fun? Or even their wheel with music and art? Just something. Just to know that 5th block might suck but just hang in there until 6th block when I can see my friends. Just something... Do you remember those days in jr high where you couldn't wait until a certain period to see your BFF. Well, take that and multiply ~ that's how important it is for Luke. So, guess what they did?




Luke and his two friends are in three different 'pods'. None of them are together. I've spoke to the vice principal (nice guy) and counselor (still undecided about her). They are telling me that they will see each other at lunch/social time. Well, yeah. We knew that when we wrote the IEP and decided that Luke needed more time with his friends. They told me that they talked to his homeroom teacher and she is going to help him make friends. I laughed at that one. Seriously! Do you not think that every teacher in every grade has not tried to help Luke made other friends?? Does she not know anything about special needs kids??? The end of last year after his IEP, Luke was scared and worried. I told Luke that he'd have his two friends. I might have to be the mother every principal dreads and hides from, but I am doing my best to see that I keep my word to Luke.




I am trying to point out that his IEP was made the end of last year and should have been taken into account when doing scheduling. Just because they didn't open that e-mail when working on the schedules, it's not my son's fault. Of course the counselor is telling me that it's "recommended" and "if possible" is what it states in the IEP. That just lets me know that she's trying to wiggle out of the problem. (that would be the reason I'm undecided about her yet) So, Friday will be another day of phone calls and worries and high blood pressure. Tonight ~ I am going to pray that God will open up that window and make it possible. Help me find that path that is right for my son...




Monday, August 9, 2010

A New Path Brings Change


Well, it's been a little over a week since we've started the GFCF diet for the family. I won't say that everything has been rainbows and tasted awesome, but it's been okay. Luke has his gluten free cereal with rice or soy 'milk' for breakfast. The rest of us are still using skim milk. There are a few cereals at Wal-Mart or Harps that are gluten free like Chex (rice, corn, honey nut), so that has helped. I've been making a fruit smoothie with the soy yogurt, blueberries, and his 'milk'. They taste just like the other ones I made with regular yogurt. Faith knows they're different and acts like they don't taste as good, but I think they taste better.


We did try some of the gluten free bread. And well ~ it's okay if you toast it. But seriously, if that was your only option ~ my sandwich consumption would go waaaayyyy down. I've checked out several books and got a lot of recipes for breads and even cakes that I can't wait to try. I've made spaghetti with rice noodles and realized that it's going to take 2 boxes instead of one to get the 'normal' amount as a wheat spaghetti box. But, I like the taste better than the wheat noodles we've been eating for years. I was never very fond of the nutty flavor of the wheat pasta. I also made chicken and noodles one night. I found the large rice elbow noodles and they were great. I cooked them in a separate pot and stirred them into my chicken mixture after they cooked. The water with rice noodles seem a lot starchier, so I don't think I'll ever cook them into my dish like I used to. Today I made gravy to go with some mashed potatoes and ham. I realize I need to have more chicken broth on hand. (some for the potatoes and some for home made gravy) It's not like I want my potatoes or gravy to have a 'vanilla flavor' that the soy milk has and every dinner I make has got to be for all of us. Luke feels different enough, I'm not going to give him a separate dinners. He's been wanting hamburgers lately. We had one without the bun the other night but it's just not the same. I've found a recipe to make hamburger buns that I'll have to try. So, I am learning as we go.


The thing that matters on this path is Luke. Can I see any difference yet? In the week that we've been doing it, Luke has been more social. He's not in his room watching TV or having his alone time as much. He is actually in the living room with us more. His ears do not seem as red. Pretty good for about a week! The true test will be when school starts and he has that stress in his life. I am going to see this diet through for the next few months ~ get his system cleaned out. We did go to the doctor to get his levels checked out. Poor guy has veins like his Momma. The nurse at the doctor's office wouldn't touch him and wanted him to drink lots of water and come back next morning. Next morning wasn't any better and she sent us to the hospital to get it drawn. One of those ladies wouldn't touch him so the other nurse had to. It took two sticks and an infant needle, but they got enough to send off. We should get the results the end of this week, maybe next week. I honestly don't think they'll find anything, but wouldn't it be terrible if years down the road we find out he had something we could have caught? That's the only reason the doctor agreed to get blood work. All this diet and vitamins for autism kids are still debated in the medical community. I am not waiting for them. It's my kid's future at stake. If replacing rice flour for white flour will make a difference, I'm willing to give it a try.

Tuesday, August 3, 2010

A New Path...

Well, we are starting a new journey together as a family...going down a new path to see where it goes. The book I've been reading, "Healing our autistic children," has given me something to think about, pray about, and more things to look up. Dr. Buckley describes autism as a "series of malfunctioning - gummed up, rusty, broken - gears or cycles, interacting in a child's body. These dysfunctional cycles play havoc with the child's cellular chemistry." And ~ according to the theory ~ if we fix the broken cycles going on inside their body, autistic children have a chance to recover some of what they've lost. It has helped a lot of severe autistic children lessen their 'fog', improve their speech, and eye contact. What about the high functioning children? I'm honestly not sure. There isn't documentation about the effects on those children. If fact, the other books I've read about the autism diet didn't even sound very hopeful that it would help. That would be the reason I haven't tried it before now. But, this book gives me other things to look for that are signs of bowl problems that the GFCF diet could improve such as: chronic diarrhea or constipation, foul-smelling stools, bloating, red ears or cheeks, eczema, dry skin or chronic rashes, chronic sinus drainage, recurrent infections, erratic behavior, hyperactivity, moodiness or irritability, and sleep problems. Luke doesn't have everything from the list, but he has enough to me to take notice and consider...


GFCF means a gluten free casein free diet. Gluten is a protein found in wheat, oats, rye, bulgur, barley, and durum to name a few. Which means, that all of the whole wheat bread, wheat tortillas, and wheat flour I've been buying and using for years thinking I was helping ~ really could have been making things worse for Luke. Casein is a protein found in milk ~ more specifically anything juiced from an animal. Including breast milk!! Luke had colic when he was born. Serious colic. Tried everything for months and months while breast feeding. Bottles and bottle of that Gas X stuff for babies. Until he was around 6 months old. I always believed breast milk was best because doesn't your body make it just for your screaming bundle of joy? But, I switched him to the colic soy formula to see if it would help. His colic decreased from all day everyday to about 2-3 hours in the evening for a few months until it disappeared at 9 months. Yes, I realize that it could be that Luke grew out it. But, what if he was allergic to my breast milk?? What if?


So, there is enough symptoms that I'm taking this path. At least for 3 months because it could take that long for everything to get out of his system. I'm going to get blood work done on Luke to see where his levels are. (yeah, that's going to be a bad day!) We are going to be trying this together as a family. Yeah, I'm going to have to tweak some recipes. And discover a few new ones. I'm still discovering pointers and facts about how to follow the GFCF diet. (Like Lactose free is not casein free...lactose is milk sugar but it's still from animal products.) So, I bought our first carton of rice 'milk' and we are beginning this journey...

Sunday, August 1, 2010

Did you know?

The Center for Disease Control stated in 2008 that 1 in 150 children in United States were diagnosed with autism. (four out of five patients are boys in case you were wondering) However, when the CDC look at children diagnosed with other disorders on the autism spectrum, such as ADD, PDD-NOS, Asperger's, ect., the number of children went to 1 in 6.

One in six children.

Out of a class of 30, statistically five are likely to have an autism related disorder.

That is not the only thing to think about. In the 20 years from 1975 to 1995, cancer rates for children rose by 20%, most rapid rates for children under 13 years old. A study also found that asthma among preschool children aged 3 - 5 years old rose by 160% from 1980 - 1994.


That scares me. It really opened my eyes to think about what's really causing all this? I was living in the 80's. It doesn't seem like that long ago. Yet, look at how things have changed. I have a child that is one of the statistics. And actually at that time, he was one of the many children out there without a diagnosis. And with the books I've read and the searches I've done, several doctors talk about autism being a psychiatric disorder. Give the child some therapy and hope for the best. A few books describe it as a medical illness. No quick fix available, but the earlier the diagnosis the better. Evidence over the past 30 years is starting to suggest autism may involve imflamation of the central nervous system. (AutismSpeaks.org) I know from experience that therapy does help. Luke's been in speech and occupational therapy since he was 4 years old. This last school year, he 'graduated' out of OT, which is such a big deal. But, I'm looking for more. I want more for my son. He wants a 'normal' life. And ~ I want that for him.

But, looking at the number of illnesses taking place in our children ~ something is wrong today. Generations are not living longer. Children are sick. I don't have the answers. I am just one of the many parents who are searching...