Autism, Celiac and Gluten… oh my!

Last fall was when I first hard about the GFCF diet (gluten free, casein free). Before that, I don’t really know that I knew what gluten was. But, I knew I loved bread, and things with wheat. 🙂 in fact, I always tried to find 100% whole wheat, cause, you know, it’s healthier.

So last fall I hear about how there is this protein in wheat, barley and rye called gluten. And if you have a child with Autism, and take gluten out of their diet, it can help them. And then there was casein, that is in all dairy. I got to thinking about what my boys ate, and pretty much all they ate was crackers, yogurt, chicken nuggests, crackers, cheese, french fries, crackers.. You get the point. They also ate fruits and a few other foods, but literally the majority of their diet included casein and/or gluten.

In children with Autism, their guts cannot process these proteins (gluten and casein). They then get absorbed into their bloodstream, cross the blood/brain barrier, and attach to the same receptor sites as opiates! (heroin). So quite literally, they are high when they eat foods containing those proteins. I did not fully realize the extent of their “addiction” right away. I was a little nervous at the idea of not being able to feed them anything, so that’s why it took a while to implement the diet.

We took the boys off casein in early December. They made that transition pretty well. We noticed an immediate change, within only a couple days, of their behaviour and speech. They were MUCH calmer in situations that would have been very stressful, and their sentences were getting longer. During the time we had snow before Christmas, about 2 weeks after taking casein out, Tyrell pointed out the sliding glass door and said “I see snow outside!” So there was a definite change.

After coming back from the Son-rise Start-Up at the Autism Treatment Center of America, we had a new determination to start the diet. We had the confidence that yes, our children will in fact eat when they are hungry. And we just have to be stronger than them. (At that time, they still ate gluten, and crackers were a HUGE staple in their diet). But with getting the playroom set up, and planning for our program, we still didn’t take them off gluten.

In the mean time, Adisyn had been sick off and on for a while. She was getting mysterious fevers with no other symptoms that would last 4-6 days, about every 6 weeks. We were on the 4th round of that, when her doctor started ordering more testing. We didn’t find anything that time, but he said to come right in the next time it happened. Gradually Adisyn was starting to loose weight, and looked malnourished. She didn’t want to eat much, except toaster waffles, pancakes, yogurt and some fruit. Then she got sick again, so I took her in immediately. Unfortunately, our pediatrition was out of the office for the week, and I did not like the one we saw. She was in the room under 3 minutes, checking only her ears and throat, not listening to my concerns.

By Sunday she was still not looking well at all, so we took her to the after hours clinic. We saw an awesome pediatrician who ordered a bunch of labs, and was talking about Failure to Thrive. Adisyn had lost more weight, and was down to just under 28 lbs. Since we went to the doctor earlier in the week, she lost almost a pound! I was freaking out about the Failure to Thrive, I thought that only happened in infants who didn’t want to eat. I was feeling SO guilty, thinking it was because I was letting her eat pancakes for dinner, and not a whole meal. When we had just sat down in the lab for the blood work, the nurse came in and added a Celiac panel to the orders. I didn’t know what that was, and didn’t think anything of it. The next day we hear from the doctor that everything looked good, blood counts were normal. And her fever was gone.

Then, it’s a week later, and the nurse from our pediatrician’s office called to say that Adisyn tested positive for Celiac, and they were referring us to a Pediatric GI (gastroenterologist) doctor in Portland, since there aren’t any down here that see kids. I was kind of surprised, I didn’t realize there were labs taken that we didn’t already have the results for. I didn’t even think to ask the nurse what Celiac was, until I got off the phone. So, I go in and google “tested positive for celiac” and all this information about Celiac Disease comes up.

Since then I’ve read a bunch, and found out that it is an auto-immune disease, and the trigger is gliadin, which is in gluten. It triggers an auto-immune reaction, resulting in the destruction of the villi on the small intestine. That is where all of your nutrient absorption happens. That is why Adisyn was loosing weight, and looking malnourished. Because she was.

I called the Ped GI doctors office, and it was a 2 month wait to get her in. There was no way I was going to wait 2 more months to take gluten out of her diet, when I was already semi-familiar with it since we needed to start it with the boys. In fact, it was just the kick-in-the-pants that I needed to take it out of the boys’ diets as well. We noticed a big difference in Adisyn right away. She started gaining weight, her sweet little personality was back, she seemed happier, and she was eating like crazy! The boys’ transition was a little harder. They went through withdrals. Majorly!! It was a really hard week for us, but that just proved to us how addicted to gluten they were. After they had that withdrawl time, they seemed to come out of a fog. They were way more alert, and improved in almost every area! Gluten free was definitely a positive thing for our house.

Then, we went and saw Adi’s GI doctor, and she said that we need to do an endoscopy to confirm the lab results. Since you cannot recover from Celiac, and it is a lifetime diet of eating gluten-free, it is important to have the “offical” diagnosis. They will take a biopsy of her small intestine, and confirm that there is damage to the villi. So, we had to put her back on gluten to do that. We saw immediate changes with that as well. She complains of her tummy hurting almost every day, wakes up at night, has diarrhea, has lost weight, and her tummy is distended. I called the GI doctor last week, and said we had to move up the appointment (it was originally July 13th) or we were going to cancel, because I couldn’t put her through this for (at the time) 3 more weeks. They moved it, and so we go tomorrow, Monday.

It is a pretty basic procedure, under an hour long. She will be under anesthesia, and that makes me a little nervous, since she’s never had that before. But we will be at a Children’s hospital, with all the specialists for pediatrics, so I know she will be in good hands. I need to double check, but I think we can start gluten free right away, so hopefully by the end of the week, she’ll be back to feeling like her ol self again. 🙂

In the mean time, the boys and I went and got tested. The boys’ are negative. Now, we don’t know right now if that is because they don’t have Celiac, or because they have been off of gluten for 2 months. The Ped GI doctor said that if their numbers were as high as Adisyn’s they would not be back to normal yet. But since they are gluten free right now, it doesn’t really matter. What it will mean is that if/when we end their GFCF diet, we will get them retested after a month. I, on the other hand, have also tested positive. I have my first GI doctor appointment thursday, and will probably also have an endoscopy scheduled to confirm my results.

I am SO SO SO happy that we found out about this at this time. Celiac disease is a disease that can go undiagnosed for a long time. Some people have symptoms as severe as Adisyn’s, and some people’s symptoms aren’t as evident, like mine. Without Adisyn’s diagnosis, I could have gone years without finding mine. This will be a huge lifestyle change for our family, but I am thankful that it can be fixed with a diet change. As for the boys, the change in their behavior and their growth in all areas of development are definitely worth the effort of eating GFCF. And… they’re much more interested in trying new foods! They still don’t eat a huge variety, but definitely more than they used to, and they are willing to try more too.

So now I’m off, need to get ready for tomorrow so it’s not such a crazy morning.

Adisyn being silly and dressing up Daddy with her hat. 🙂

The brothers, Terrence – yellow, Tyrell – blue, enjoying their bubbles, and the beautiful weather as they watch us do yard work.

A few of my favorite things

My kids just say the cutest things. We waited so long to hear the boys talk. To get more of a glimpse into their personalities, and what they are thinking. I love hearing what they have to say, and I try hard to not shush them.

Tyrell: “I go playroom (with) Mommy!” – usually tugging my hand, pulling me towards the playroom, with the biggest smile on his face that could light up the city.

Terrence: “I happy!” – usually said while throwing himself at me in a huge hug.

Adisyn: “Mommy, want to dance with me?” – as she holds out her hand waiting for me to twirl her around like Cinderella.

Such sweet, sweet kids. And I am incredibly blessed to be their Mommy.

This morning at breakfast…

Terrence: “Mommy! A Mommy help you, more milk!”

*I was in the other room, so he said it a couple times. Usually it would have escalated quite quickly, and become yelling, but he just repeated himself 2 or 3 times.

Mommy, when I reached the kitchen: “Ok Terrence. Thank you for using your words!”

Terrence: “You’re welcome.”

So sweet.

Garden

So I know it’s been a terribly long time since I’ve posted, and I promise a very long update will come soon. For now though, just wanted to post a few pics of our vegetable garden.

This is the first year I have planted anything, so it’s really exciting. 🙂 The kids love it too, and go help water every day.

My Dad built these great raised beds, and Joseph made tons of trips back and forth to unload the dirt.

My mom helped us pick out everything we wanted to put in, and plant it. In the first bed there is lettuce, cilantro and chives. As well as pumpkin, bush beans and carrot seeds. In the second bed there are zucchini seeds, 3 different tomato plants, jalapeno peppers, Thai hot peppers, sweet red peppers, bell peppers, lemon basil, orange mint and parsley. Our friends gave us some raspberry bushes too, that are along the fence.

This is 8 days post-planting. All the seeds have come up! The beans were the biggest, but the pumpkins, zucchini, and one little carrot had all come up as well. I was so proud. 🙂

And these are 2 weeks post-planting. We added another row of red leaf romaine lettuce. All the kids were helping me water, but only Tyrell and Adisyn were into a photo-op. 🙂 Adi was so proud of helping me plant the lettuce. This is the one she did completely by herself. And you can see how big the carrots and beans are getting. Yay!

Here’s a cute pic of the three of them. We went for a walk all around Dorris Ranch. They had a blast! I will try to post the update of our Son-rise program this weekend. The boys have been doing AMAZING, and have grown so much. I’ll also have more pics from Adisyn’s birthday tomorrow. She will be 3!!

Attitude

So today is one of those days where I’m feeling sorry for myself, and quite grumpy. Joseph has been gone since wednesday, and won’t be home until tomorrow evening. I still have this stupid cold, and can’t hear out of one ear. The kids are missing daddy, and the boys are finishing their detox off of gluten. So, I’ve decided that I need to write out things I am thankful for, and blessed by, to put things back into perspective.

1. I am thankful that in this economy, Joseph has a great job.

2. I’m thankful that the company he had to make a trip to, is close to his mom and sister, so that he can visit family and we don’t have to pay the airfare.

3. I’m so glad that we realized how addicted our boys were to gluten (I had written about this previously, but children with autism don’t digest gluten, it goes into their blood, and into their brain, where it binds to the same receptors as heroin and morphine. Quite literally, they were addicted, and are having withdrawl symptoms), and I’m glad we’re almost to the end of the detox. (hopefully).

4. I’m so thankful that my stupid cold has not turned into bronchitis or pneumonia, and that my ear pain is gone. Hearing myself talk and breathe all day is annoying, but manageable; having that intense pain was close to unbearable.

5. I’m thankful for our Son-rise volunteers! Today, specifically, Nana, who is in the playroom so I can clean my house. (and write a blog) 🙂

6. I’m so thankful for finding the Son-rise program! Going through these withdrawl symptoms with the boys has reminded me of how far we have come! I’m so glad that we now have hope, and the knowledge of what to do to help our precious boys.

7. I’m so blessed by my children! That in between their crazy behavior, they ask for hugs and say “Mommy hold you”. Who can resist that?

8. I’m thankful tomorrow is Easter, so that I take the time to slow down and remember what my Savior did for me.

9. I’m blessed by my family! My husband, kids, parents, siblings, grandparents, etc. I’m glad that tomorrow we can all be together. And I’m thankful for my friends who help me to keep my sanity.

10. My life is blessed every day by the sacrifices that we make for me to stay home with my kids! It can be frustrating, and I do get grumpy, but I would never choose anything over this. I love that I spend the most time with my kids. I’m so thankful for days like this when my Heavenly Father reminds me to slow down and remember the important things. Thank you Jesus!

It’s been a while…

I can’t believe it’s been this long since I’ve updated, because so much as been happening! About 2 weeks ago now, we had our playroom up and running for our boys’ Son-rise program. They absolutely love it! They really love the 1-on-1 time, and ask to go in there. They caught on really fast the idea of taking turns, which was one of our concerns, since we only have 1 playroom.

We converted the boys’ bedroom into their playroom, and moved their bunk beds into Adisyn’s room. Terrence didn’t like the change the first couple nights, but they have adjusted very well.

Dad built these awesome shelves so that they toys are out of the boys’ reach. The reason for that is, to get what they want, they have to go through us. So it gives an opportunity for social interaction, using their words, etc. They LOVE jumping on their trampoline, which I found at Goodwill for only $14.99! I was so stoked about that. They also love rolling on their bellies on the exercise ball, or sitting on our laps while we bounce. Lots of good opportunities for eye-contact, making up games, etc. They also love watching themselves in the mirror. 🙂

They like sitting at their little table and playing, and drawing on the chalkboard. It’s fun for me too, makes me feel like a teacher. 🙂

This room, is where all the magic happens!! The point of the playroom, is to provide a distraction-free environment, where it’s child-centered, full of fun and play, where they are learning and growing. We have done regular time in there for about a week and a half and have already seen progress! The kids fight much less between themselves. For a while, ALL we were hearing was “Mine! My toy!” and screaming and yelling as one chased another around the house. They still do that occasionally, but not as often.

Because they are in control while they’re in the playroom, they are much less likely to seek it outside the playroom. The teachers at Son-rise told us that would happen, it was just so amazing to see it after such a short time! When we ask them to do something, or give them directions that they don’t necessarily want to do, they adjust much faster. The overall amount of tantrums has gone way down. Also, when they are asking for something, and we are requesting for more, they are more likely to give it. For example, if they say “a drink” when asking for a drink, it usually would have been “a drink. A drink! A DRINK! A DRINK!” until we gave them the drink. If we would have asked them to say “I want a drink”, they more than likely would just say ‘A DRINK’ louder and louder and have a meltdown until we gave them one. Now, even if we have to prompt them a few times, they will say the longer sentence.

The last couple days we haven’t been in there at all, the boys are pretty sick, as am I. I really miss being in there with them. It is a great opportunity to have good quality time with them, and it’s just really fun! We have had some amazing volunteers commit to playing with the boys, and we are so blessed. The boys’ lives will be changed forever by this investment of time, and we are so honored that you are a part of that. Thank you!

The last thing we have to do to get the playroom ready is the observation mirror that will go in the door. It should be in any day now. That will give us a chance to give much more quality feedback, and to have volunteers able to observe Joseph and I. I’m hoping the boys will be better to go in there tomorrow for a while, but we’ll see. Next week they are back in school, so we will be doing afternoons and evenings only. We are going to watch that carefully, to make sure there are no regressions, or slowing down of progress with them being back in school. They only have about 6 full weeks left until summer break, then we will add a morning session as well.

So there’s the update with our Son-rise program.

I got to meet my beautiful niece this last week too! My brother-in-law’s girlfriend and baby came out for a visit from NJ. And… he proposed while she was here! So I will have a new sister-in-law. I am so excited for them. It was so fun to meet Mikayla. The only time the boys have met their cousins was when they were 8 months old, and that was only their 2 older cousins. They enjoyed meeting Mikayla, except for Adisyn. She was a tad jealous.  She’s not used to sharing the center of attention. 🙂 Over the time they were here, she had seen Mikayla probably 3 or 4 times, and she refused to have anything to do with her, or go near whoever was holding her. We tried to get a picture, but she wasn’t too into it, as you can see by the picture. 🙂

I’m really glad that they will be moving out here after the wedding. It will be fun to have more of Joseph’s side of the family close. Well, I am off to bed. Hoping and praying the boys will have a more restful nights sleep, that way I can sleep too. Here’s another pic of Mikayla. Such a sweet baby girl…

“No, I’ll use my shirt”

Well we are in the midst of the sickies here at the Koffa house. Terrence sneezed all day thursday, and woke up with a full blown cold friday. He was kind enough to share it with his brother saturday. Yesterday I had a horrid sore throat and today Adisyn and I had the cold. We’re hoping Joseph can escape those germs. Adisyn has also been sick for a while, with stomach issues. I will spare the details, except Joseph and I were awakened at 1:40am Sunday morning with puke all over our bed. Fun stuff! I think she is finally all over that. She had lost a pound in a week and a half, a lot for her tiny body, so our doctor ran blood work just to make sure there wasn’t an underlying issue. Thankfully everything came back perfectly normal. We just need to get her on a long enough healthy streak to put some weight back on her.

I’m hoping the boys are well enough to go to school tomorrow. They only have tomorrow before they have 2.5 weeks off for their spring break. Terrence seems to be doing a little better, so hopefully they’ll sleep tonight.

So today Adisyn was sitting with me before nap, and her nose was running, again. I asked her if she wanted to go get a tissue off the table and she said: “No, I’ll use my shirt”. 🙂 She said it so matter-of-factly, like it was perfectly normal to wipe her nose with her shirt. I can’t really even remembering telling her she could do that. The only times I have is if we’re out, without any kleenex. Funny girl. 🙂

“Duh, Mom…”

I have a feeling Joseph and I will be in-for-it when Adisyn is a teenager. She is already getting a sassy little attitude. Most of the time she does really well, and is well mannered. She has been feeling under the weather lately, and her attitude is a little quicker in coming out. I was in the back of the house picking up, and walked to the living room. She’s sitting reading a book, and there are little squares of a graham cracker all over the floor. I said “Uh, what is that?”, with the tone of: why are there pieces of graham cracker all over the floor? Adisyn looked at me and said “Crackers?” With the tone of: Duh, mom…. don’t you know what graham crackers look like?

It was pretty funny. Of course I didn’t let her see that, we’re not wanting to encourage this little attitude of hers. 🙂 I’m sure she gets it from me, I can remember many times that I got in trouble for back-talking my parents. 🙂 Now I’m off to make sure she has cleaned them up.

Oh, I love it

This morning, I was helping Tyrell and Terrence get dressed. For some time now, a couple months probably, Tyrell has been quite independant with his dressing style. He will not wear a long-sleeved shirt. He will wear sweatshirts, but his t-shirt has to be short-sleeved. Occasionally I can grab 2 out from the closet, and he will choose one of those. Most of the time though, he has to pick out his own. 🙂

This morning I took out 2 long-sleeved ones to see if he would choose one of those. He didn’t, of course, and went to the closet to pick out his own. I was still helping Terrence in the living room, and Tyrell was in his room saying “I help you, I help you.” I told him I’d be in there in just a minute. He started calling out “Mommy! Mommy!” I just love it because, we have waited so long for him to communicate that way. He not only used his words, when before there would have just been crying or screaming. But he was using me to have his needs met. He realized that if he communicated that he wanted me to come to him, I could help meet the need he had. (getting his shirt down). It was really so sweet. I made a big deal about it when I went in, and he was very proud of himself.

We have waited so long to hear those sweet little voices, and I love it when they say our names. Such a sweet sound…  I want to never get tired of it, or wish for quiet. 🙂

The 10 Things

I know I meant to write a whole lot more about our Son-Rise start-up program while we were gone. It was just such a full week! Every day there was so much information, and I just couldn’t formulate my thoughts to make a meaningful post.

On the last day, we were asked to pair up with another person, and write out the top 10 things we learned during our Start-up program. In no particular order here are mine:

1. The Stimulus -> Belief -> Response Theory. The point of this is that I can’t blame the stimulus for my response, and I do have control over my beliefs, and that’s how I change my response. An example they used was with rain being the stimulus. To a farmer who hasn’t had rain on his crops for a year, the rain is great! It is a blessing, and he loves that it is raining. To a bride-to-be who planned an outdoor wedding, the rain is horrid. She hates that it is raining. But in reality, the rain is neutral. It is neither good nor bad. But our belief about the rain says what our response will be. For a personal example, I might say that my boys were making me frustrated that I couldn’t take them to get formal pictures done. But my boys aren’t in control of my frustration, only I am. So I have to look at the real reason I am frustrated. And that leads to the next things I learned:

2. I have to accept and be comfortable with my boys’ Autism in order to love and accept them unconditionally. This right here was the basis of so much of my frustration. I needed to realize that their autistic behavior was not naughty behavior. Most of them times I would get frustrated was when I wanted them to just act typical. I was too caught up in my own frustration to be able to step back and see that. Then they would pick up on my frustration, and the situation would escalate. However if I am comfortable with what is happening, I would be doing things different. First of all, I would probably avoid certain situations where I know it would be too much for them to handle. (the professional pictures, etc.) Then in situations that were unavoidable, and even in things that would come up at home, I would be comfortable with the response they would give, and my frustration would not add to whatever is going on.

3. At this time, School is not necessarily beneficial to them. Before we left, I didn’t think we would be making any changes to the boys’ preschool program. They have made HUGE progress since starting 1.5yrs ago. And the son-rise teachers weren’t bashing on schools. Simply pointing out the things about it that might make it harder for our special children. The stimulation was one. Autistic kids perceive stimulation much differently than typically developing kids. There is a lot going on in the classroom that probably overloads them, and they’re so busy trying to cope with that, they aren’t advancing in other things. Even when they appear to be coping well, they are working really, really hard. For me also, I had to realize that I am capable to running this program for them, and I don’t need outside “professionals” in order for my kids to recover.

4. I learned the importance of joining with my boys’ “isming”. This is the first key step in reaching our children. We have to show them that we accept them the way they are, and are interested in their world. This is our step we take to their world, to make the connection with them, to be able to show them our world.

5. I learned the importance of giving space to my child while I’m trying to make a connection with them.

6. I learned that I am not alone (and Joseph, as parents we are not alone). That there are other parents experiencing the exact same things we are.

7. I learned, well I guess was reminded again, to love myself, husband, kids, and just love in general, with no conditions.

8. I learned that Volunteers can love love my kids and believe in them just as much as I do (and Joseph). Before we went, I had sort of an outline of what I thought our program would be like. I figured it would be mainly myself and Joseph, my mom and maybe a couple other family members involved, working with the boys in their playroom. I didn’t want to feel like a bother asking other people to volunteer. But I also thought that we’d be the best people to be in there, since we believe in them the most. Well, a couple of the teachers there were not just teachers, but they had volunteered in many different playrooms for many kids. Seeing their love, and belief in those kids made me realize that there are other people here that can believe in my boys and love them the same way. And speaking of that, we are looking for volunteers, so let me know if you are interested!

9. I learned that I can believe anything for my boys. That I can accept and love them unconditionally, but at the same time hope for the sun, moon and stars for them.

10. I learned that the playroom is like a greenhouse. In there, they can grow in a safe, controlled environment. Then they will be able to go out and thrive in all environments/seasons/weathers.

This is just a small portion of what I learned this past week. It truly was one of the most amazing experiences ever. I am so so grateful that Joseph and I got to go together. We are very excited about getting our program started. We’ve already started getting the playroom togeter. We’re going to go through the toys we have and decide what needs to go, and what we need to add to it. Then we will get going part time, while we round up some volunteers. We hope to get a fuller schedule going in the next couple weeks. Anyone who would like to volunteer, let us know! We are asking for a commitment of 6 months minimum, and we will be doing training, and have lots of feedback, etc. You won’t just get thrown in there with no idea what to do. 🙂 We will also have team meetings every other week for brainstorming and catching up on how everyone is doing. Anyone else who is just interested in the Son-rise program, I highly recommend the book Sonrise: The Miracle Continues by Barry Neil Kaufman. Barry and Samahria are the founders of The Autism Treatment Center of America, and developed the Son-rise program when their son Raun was a toddler and severely autistic. We got to meet Raun! He is now the CEO of the ATCA and is currently doing a lecture tour, and will be in Eugene the first part of April. If anyone knows anybody with an Autistic child, they should go!

Anyway, I have much more I will write about our week there. Just wanted to get this posted. We want to say a HUGE Thank You to all who helped us out financially. You guys made this trip possible. This program is going to be life-changing for our boys, and you were a part of that! THANK YOU!!!

I will also have pictures up later. It was the most beautiful campus. About 95 acres in the middle of a forest. So beautiful. Hope everyone is having a great week!

Love, Kacy & family