Sunday, December 21, 2008

AUTISM UPDATE


Ok, I know most of you don't read my blog because I have a son with Autism. HOWEVER, sometimes I feel the need to share for people who might 'come across' my blog, or have a friend with a son recently diagnosed. For someone with a child who is recently diagnosed, Autism can be an extremely scary unknown world. If you know someone, maybe this will help you, understand them. All opinions are based on my personal experience and knowledge about MY SON. Autism is a WIDE spectrum of behaviors and symptoms. Very few are related to each other. There will never be a case where I say to another mother, THAT IS EXACTLY LIKE MY SON! It just won't happen. Technically speaking, my son has (currently) been diagnosed with PDD-NOS. It is considered on the "spectrum" and most of his issues are with developmental delays both educational and social.




Luckily, Jaxon has GREAT DESIRES to be social. He doesn't have classic "stimming" issues (hand flapping, high pitched noises) but can occasionally get too aggressive in playing. Not that he wants to be mean, just that he gets "overly excited" and can't control his desire to jump on someone (it is a sensory issue). He can talk, tell you what he wants, but many children with Autism have problems answering W questions concerning, WHAT, WHERE, WHY, WHEN. They just don't have the ability to handle it cognitively. He will answer the question, but usually not accurately, or he will say, "I don't know". Overall, he is a fun kid who keeps us laughing and we enjoy his personality... If you have read any of my Jaxonisms, you will know why.




Jaxon was diagnosed around the age of 3 when I tried to put him into pre-school and he couldn't handle the social aspects of it. He played too aggressively with some kids (usually other boys who wanted to play rough, but Jaxon didn't get boundaries), didn't want to transition to different activities (follow the crowd) and would "melt down" when he was asked to conform. Not to say he never had issues before then. He had a hard time sharing, would get too aggressive with other kids, and has absolutely NO fear of strangers as well as a very high pain threshold. But, we would chalk it up to being two. I mean, how can you tell the difference between 2 and Autism. It is tough when you have a mild child like Jaxon.




Of course, there is lots of controversy around Autism and how/if it is treatable. I think Jaxon has a very specific case. He had chronic ear infections from the time he was 5 months old to 2 years old when we finally decided to put tubes in his ears. He was on antibiotics pretty much that whole time all the while getting his immunizations along the way. I am sure any of you who have put your child on an antibiotic EVEN ONCE know what it does to their bowels system.. usually causing diarrhea. I am sure it isn't a stretch for anyone to realize that back to back antibiotics for 2 years would hurt anyones' digestion, not to mention a small child. In regards to the immunizations. I don't think it was those that CAUSED his Autism, but, the fact that he continued to receive them when he wasn't well didn't help. Your child should be well, and have not had any sicknesses for a week or so. That was never so in Jaxon's case.




Our philosophy with Jaxon has always been, "we will give it a try". I had a friend in Spokane who started her son on a Gluten Free/Casein Free Diet and was doing a Vitamin Regimen to help cure some of her sons symptoms. They were using a specialist in TX. It seemed too drastic for us.. No wheat, No dairy. If you know ANYTHING about me it is that I love to cook and bake. Changing our lifestyle this way seemed out of the question. Not to mention the fact I wasn't going to take Jaxon to TX to see a specialist. But, once we moved to Arizona, there were many specialists here and many people who had seen great results from this method. With it being so close, I had a hard time telling myself it wasn't worth it. These types of Dr. s are called DAN Dr.s which stands for Defeat Autism Now.




I went in blindly at first. Not really knowing the science behind it, but thinking, why not try it? I wondered why wheat would be such an issue, but then I started to learn more about Celiacs Disease. Celiacs is becoming more and more common and is wide problem among children with Autism. Actually, allergies IN GENERAL are very common among children with Autism.




What I found it that Celiacs is not just an allergy, but, a problem with the way that the bowels react to Wheat. The villi in the intestine cannot process the wheat, so they lay flat, prohibiting absorption of anything into your system. So, celiacs is a problem not because of an allergic reaction, but, people can actually die of malnutrition because their bodies are not absorbing critical nutrients. Now, back to Jaxon. Two years of antibiotics I think had caused his digestive system to shut down. Not only prohibiting essential nutrients for brain function, but at the same time we were injecting him with immunizations that his body could not process, causing a toxic environment. After hundreds of blood tests and lab work, that evidence came out and Jaxon was found to be lacking in several essential nutrients in his body that would allow his body to function properly not to mention the finding that he had very high levels of toxic materials in his body.




We have had him on the GF/CF diet for about 6 months now and have seen some great results. No, there is no magic bullet and I am not sure Autism can be "cured". Maybe in some very specific cases, but definitely not ALL. He responded almost instantaneously with taking Dairy out of his diet. He had increased eye contact and decreased melt-downs. He didn't even melt down very often, but, in situations where he would have normally melted down, he was having many more "typical" responses.




The best result we have seen from the is Jaxon's ability to work with those W questions. We went to the Temple a few weeks ago to see the lights. Jaxon asked about the pool of water outside and asked if that is where they do baptisms (that would be the first miracle.. how he would assume that is beyond me) I said, no, and told him that they do those INSIDE. The missionaries came to dinner a week later and asked if we had been to visit the lights. Jaxon told them, with perfect recall, that he had been to see the lights at the temples and thought the water was for baptisms, and that his mom told him they do the baptisms inside. It was astonishing, truly. Sometimes it is hard to tell if what you are doing is really helping, but, in this case, it most certainly is.




Our goal with the diet has always been to try it for 3 months. We have been on for 6, and have decided to take him off for the Holiday because it is just too hard to police with plates of cookies around. It will be an interesting test to see if there is any difference in his behavior, but one I am excited for! We will see how it goes, and may put him back on the GF/CF Diet after the Holidays. We are grateful for these kinds of "interventions" and we do others as well such as Speech Therapy, Occupational Therapy and ABA Therapy that help teach him more of the social aspects of being in society. Hopefully, with all of these things put together, Jaxon will be able to enjoy life like all of the rest of us. He will probably still have challenges throughout much of life, but we want to give him the best chance we can.








13 comments:

Natalie said...

I love your awareness and willingness to try. The kids that I have known with autism have the most AMAZING spirits! Often times, kids with AMAZING spirits need parents who will work a little harder on their behalf. Jaxon was sent to just the right mom:). You're amazing! KEep up the good work!

Melissa-Mc said...

I have 2 nephews with autism. One is on the spectrum of Aspergers and the other is very extreme (15 and can't talk, etc). You are doing a great job with Jaxon and he is blessed to have you as a mom.

danandjulee said...

Thanks for sharing your experience and your insights, Lindsey. I'm so glad that the diet change seems to be helping Jaxon. Please keep us posted on other treatments and techniques you try with him.

The Grant Family said...

I think my neighbor who's son has Autism is on that diet. They even bring their own bread for sacrament meeting. I'm so glad that there are some things that can help. I just pray they find more. Take care & Merry Christmas!

jessica said...

I totally appreciate your autism updates. I think it's great that you share this with everyone. I may not have a child with autism but I do have a cousin that does. Every one knows someone that is touched by this. And besides... it's part of your life so I want to hear about it.

Ilene said...

Interesting! Keep us updated. That story about the temple is fantastic.

Bridget said...

I think its great that you share these things. I am sure they are very helpful to other parents with autistic children. I think its great you are willing to try anything and I"m happy for you that you are seeing good results with the diet. That's awesome.

Leah said...

You are a great mom...don't EVER forget that. Jaxon came to the right family.

Thank you for educating all of us. I love to hear more voices out there that I can relate to.

Chad could not do the W questions at Jaxon's age too. It was hard. Now it is no problem and he's been able to do it for several years. I share this with you only because I know there is hope. When Chad was younger and more in the depths of autism, it was a dark time. Things are really good now. Not perfect or easy, just really great, a ton of fun, and lots of laughter.

Jaxon I know will amaze you as he grows. I see he already does. These kids continue to surprise us and we don't take a single thing for granted like eye contact!

Leah said...
This comment has been removed by the author.
calibosmom said...

Wow. So interesting. Thanks for sharing your stories with us. I'm really curious to know how he does with his holiday eating-let us know.

gab said...

Your guy sounds so so much like my guy. The aggression, the ear infections, the WANTING to be social... but not knowing how.

All I can say, is that he is almost 10 and has come SUCH a long way. Still battles ahead, but I can't believe all he can do.

Motherhood is not for wimps! Good for you and all you are doing, Lindsey!

Tate Family said...

This is so interesting, Linz. Wow what a journey you are on. We've had similar struggles with one of ours who has anxiety/ADHD and finding our own answers has been tough. Much love...

Jenibelle said...

Very interesting! I had celiac as a child and outgrew it around the time of puberty, interestingly though, I have major food allergies in other categories, melons, fresh vegetables and raw tomatoes, corn etc...Still,When I eat too much wheat stuff I still have problems. When I was in college I used it as a weight control method. After almost killing myself with a lack of nutrients, I have gone the opposite direction. I can't seem to find a balance. Good luck with Jaxson's diet, you are a good, well informed Mom; if something stops working for the good, read more and try something new. You're amazing.

LinkWithin

Related Posts with Thumbnails