autism, asd, recovery, hope,

This past week has been difficult. Accidents, emotional outbursts and a lot of stimming behavior. My wife suggested we slow down with his supplements, I suggested we continue on. Sometimes recovery looks like regression until a breakthrough. My experience in working with my son is that from day to day it is hard to know what to expect. Keep good notes and maybe a pattern will emerge, but maybe not. He finally broke through a few days ago. His improvements cross many areas. He is speaking much more fluidly, he can find the words without spacing out as much, his movements are smoother, and more spontanious, he hopped for the fun of hopping, not as an excercise we encouraged. The potty training is back under control. We even sang a song together from Signing Time Songs. Sometimes I see you stuck For such a long time A daily nothing new Pretend I don’t mind With lists of things you’ll never do Until somehow you do And you do — you do — you shine The days and months and years, they run together Is it just one day? Or is this forever? You’ve taught me in your lifetime More than I’d learned in mine And you do, you do, you shine

Omega 3 and Autism Recovery

We didn't know what to think. AJ started to have an accident daily. He was getting his cod liver oil. Luckily JC remembered we had received a free sample at Autism One last year and left it in the car all day. The heat from the sun all day may have destroyed the beneficial fatty acids in the cod liver oil. Earlier in the week we attended a seminar where Dr. Jorn Dyerberg, one of the pioneer's of Omega 3's and heart health, talked about the value of fish oils. He outlined the importance of Omega 3 and Omega 6. Omega 3 includes both EPA and DHA and has anti-inflammatory properties. Omega 3 also improves cognitive function and acts as an anti-depressent. Dr. Dyerberg stated that 20% of the brain and nervous system are made up of essential fatty acids. I wonder if this is why accidents happen when AJ doesn't get his. With his body constantly trying to cope with the excess toxins he needs all the Omega 3's he can get to keep things working properly. I think we're going to double his dosage for a while and see if there is any improvement in his coordination and mood. I asked Dr. Dyerberg about it, but he has never studied the effects of Omega 3's on children effected by autism. Dr. Jorn Dyerberg also mentioned several tests to have done to measure health. He suggested a non-fasting triglycerides test, most Doctors do a fasting test. Elevated non-fasting results warn of possible heart disease. He also suggested checking your 24 hour HRV, heart rate variability. A good high HRV indicates your heart can adapt to changing needs. The last test he suggested was the Omega 3 Index, which measures the amount of EPA and DHA in red blood cell membranes. I believe this test was pioneered by Dr. Harris and Dr. Von Schacky, but I haven't tried to follow up with it yet. I also had the opportunity to talk to John Carlson the founder of Carlson's fish oil about the difference between fish oil and cod liver oil. He told me the cod liver oil includes vitamins A & D and is suggested for use Sept.- March when we don't get as much natural sun light. The fish oil doesn't have those vitamins included.

Two Steps Back. This is Recovery?

This is the hardest part of AJ's recovery. The last several days he has been an emotional powder keg. We have had crying fits, refusal, he even had an accident today. It's been weeks since the last accident. He wants to "stim" all day. At the sink, by the washer, the dryer, watching paper or receipts flap over the heat registers, watching flames in the furnace (we have latches to keep the doors closed,) but he will release the lowest one, crack open the doors, peak through the slats of the louvers, anything for his fix. We used to get freaked out during these phases, thinking maybe the supplements weren't working, maybe the pediatrician was right and there is nothing that can help him. Maybe we are making him worse instead of better. Our Dr. U warned us this would happen, but it is still difficult to go through it. As the toxins are released they can cause effects that look like regression, behaviors increase, accidents happen, AJ's temper flares. His body is "dumping" the toxins that were stored safely away in the fatty tissue of his brain and other organs until he was healthy enough to release them. This disruption to his system looks like we are losing progress and the temptation to quit creeps in. Now my wife and I remind each other, "looks like a developmental leap is coming" and we pray we're right. We pray we are doing what's best for him. We remind ourselves all the parents we've talked to who are successfully recovering their kids feel the doubt, all face the fears, all the successful ones keep going. Relentlessly forward in faith. I can't wait to see where his next great leap comes from.

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It covers:

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• How to get traffic to your blog.
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I'll let you know what I think once I've had a chance to check it out. Meanwhile, go grab yours while it's still free.

PB&J the GF/CF way

I used 4 knives to make two PB&J's for my two kids. AJ is gluten-free, casein-free, KJ is not. We are carefull to avoid cross contamination of the peanut butter and jelly jars. Usually I make AJ's sandwich completely before starting on KJ's. Then I carefully drop the needed PB&J onto her bread, without touching the bread, then finish by spreading it out. The knife never contacts her wheat containing bread until I'm done using it to get the PB&J out of the jar. But today KJ asked, "Why does AJ always get to be first? I want to be first today." She struggles with seeing AJ's extra help and attention, but not having the understanding of why. I can't imagine how she's feeling to know there's a difference, but not knowing why. It's all she's ever known. So I made hers first. I spread the peanut butter and realised I needed a new knife for the jelly. Spread the jelly and got a new knife for AJ's sandwich. As I was spreading his jelly, she asked me to cut her sandwich, I did. And I needed the fourth knife to finish up his sandwich. I'm just glad we don't have a super sensitive kid that can't even have the crumbs from wheat near him.

Forgiven

Two days ago I finally did it. I forgave myself. My gut told me not to get AJ's vaccinations. I relented under the pressure of all the "experts" and all the other people in my life who love my son and wanted the best to keep him healthy. They truly believed it medically important and I had only a gut feeling it was not. I remember how I was treated at the hospital the day my son was born and I refused to allow the first vaccine. The nurse told me about all the terrible effects of Hepatitis and how without the vaccine I was needlessly exposing AJ to danger. We talked about the fact that hep. spreads primarily from sharing dirty needles and having unprotected promiscuous sex. I felt as a new born he was at very low risk for those issues and the vaccine could wait. She reacted like I was a crazy person putting him at risk. I didn't know enough then to know why I felt that way. I hadn't done any research into vaccines, I just went with my gut. Eventually I buried my feelings, I never did my own research, and I allowed the vaccines that delivered the toxins pushing him over the edge into his autistic spectrum disorder. I blamed myself for not following my instincts, for not doing the research, for letting it happen. I knew that if I was stronger my son and my family would not be going through this now. I can't change any of my past decisions. I forgave myself, I cried, and I am moving forward open and engaged.

Christmas Without Cooking, a GF/CG Miracle

This was the first Christmas since we started treating AJ through diet and biomedical intervention we didn't have to prepare his meal and bring it somewhere. My mom bought and prepared the entire holiday meal for everyone using organic and gluten free, casein free ingredients. The diet has become such a part of our lifestyle I hadn't realized how strange it would feel to not have to worry about "what is AJ going to eat?" Usually at a family party there is a huge spread of food and JC or I prepare his meal separately. We have a bag with GF/CF containers of whatever is being served. Little containers of AJ's special food highlighting the fact his needs are different then everyone else. This time AJ appreciated walking through the line just like anyone else. He picked and chose exactly what he wanted to eat. My Mom also commented that once she got over the scary feelings of the unknown, it was not hard to do. GF/CF really means roasting more veggies, eating more fruit, less baking and less depending on butter to provide the flavor. Now we tend to use more spices, oregano, rosemary, dill, basil. Overall I believe we eat much healthier then we used to.

Thank God for Dr. U and Our Family.

Today I stopped at AJ's Doctor's office to replenish some of his supplements. Today's tab ran $261.23. Insurance will cover none of it. They are not pharmaceuticals. Thankfully my wife and I are not in this alone. This months supplements were covered by an unexpected gift from one of her relatives. As I left the office I saw a man loading an SUV with a baby stroller. They were from out of state, visiting our Doctor. As I looked around the parking lot the license plates reinforced how fortunate we are. Wisconsin, Indiana, Iowa, parents drive with their kids affected by Autism to seek out treatment for the untreatable. In previous visits we have met people from Missouri, Nebraska, Texas, even as far away as Italy and other countries in Europe. We are blessed to have such a wonderful Doctor, a true healer, 25 minutes from our home. When we contacted her 3 years ago the wait list was 8 months long and because we were local we only had to wait 4 months. We jumped at an open slot with a few days notice, from someone who had to cancel. Now her wait list is at least two years. I prayed for our son to begin his treatment before his 4th birthday and the first week of July an appointment opened up. I took the appointment without question and cried tears of joy. With the support of our Doctor, true science, family, and friends, we are recovering my son. When I am able I will help others recover their children. This blog is helping me focus my efforts for my son and I hope will help others as well. I just received an offer in my email box for a program to teach how to profitably blog.

I'm evaluating a multi-media course on blogging from the folks at Simpleology. For a while, they're letting you snag it for free if you post about it on your blog.

It covers:

• The best blogging techniques.
• How to get traffic to your blog.
• How to turn your blog into money.

I'll let you know what I think once I've had a chance to check it out. Meanwhile, go grab yours while it's still free.

This should be interesting.

Wet Pants, Bloody Noses, and Supplements.

This was a good week for reminders of how important A's supplements are. During the hectic holiday season A's supplements are not always given. We try to keep up the routine, and God bless people who can do it 100%. I admire them. My wife and I stumble at times. Sometimes we run out, sometimes the kids are with their Grandparents and don't get the supplements, sometimes we are rushed and forget. The Omega 3's from the fish oil seems to help with his ability to know when he has to use the bathroom. I noticed a couple of times he had a small accident with wet pants, not a full jean wetting soak, but his underwear was damp. Maybe he doesn't realize he has to go until he feels it on the outside. I don't know why, but making sure he gets his Nordic Naturals will cure that problem. Nose bleeds mean he needs more zinc. When we were shoveling the other day he looked at me holding his shovel smiling, "I'm doing good shoveling. Right Dad?" I looked up to see his eyes shining bright, his toothless grin, and blood running out of his nose down the sides of his mouth. He had no idea. He does not seem to have much sensation under his nose and around his mouth. We've been through this before though. I checked with J later that night and turns out we ran out of his liquid zinc and the powdered form got missed a few times. At least we know what to do, even if we don't completely know why.

Get Everyone on the Same Page to Move Forward

On Friday I went to a presentation at AJ's school called "Supporting the Growth of Positive Behavior in Young Children". Great information from a wonderful resource in Illinois, Star Net Region II http://www.thecenterweb.org/ 1-224-366-8579. The school provided babysitting and at the end of the presentation KJ and AJ were brought into the room. The aide, JD, worked with AJ on zippering his coat. As I watched I realized she was teaching different then I was teaching. Which may be different then the way my wife is teaching, and his grandparents may have a different approach. No wonder AJ still can't zip his coat. AJ needs one way taught across every environment, he will learn with consistency and reinforcement. We gave him different methods in different environments. I have to create a sheet with the goal to teach, the steps involved, the words to use, and the prompts to use. With everyone using the same methods to teach the basics AJ will progress much faster, his frustration level will decrease, his confidence will increase.

Autism What is it? A parent's answer.

Autism is one of the scariest words a parent can hear when it is about their child. All of the parents with ASD kids I've talked to spent time denying Autism, many still do. I know my wife and I spent over 1 year chasing other names for what we saw in our son, sensory integration disorder, low tone, hyper sensitivity, PDD-NOS. Ultimately to treat him we had to accept the label of Autism or ASD-Autistic Spectrum Disorder. By accepting the label we found doctors and researchers who are helping kids like ours. Autism is a spectrum disorder, effecting children in different ways. Autism is polarizing, people argue about causes and cures, epidemic vs. better diagnostics, genetics vs. environment, acceptance vs. treatments, behavior modification vs. biomedical, vaccination vs. no vaccination... Autism is frustrating, your pediatrician patronizes you, your insurance company denies you, your family and neighbors tell you you're overreacting, your school system placates you, your child is suffering, you know it, and you don't have answers. Autism is hope. My son's autism has opened my eyes to a new world. A different world. A world where the smallest accomplishments are celebrated. Progress is measured and all things are possible. This blog is going to help me make sense of this world I hope it is useful for others as well.