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.

Recovery = three steps forward, one step back.

AJ was banging the wall, yelling "Bad wall. Stop it! You don't hurt my sister!" KJ bumped her head on the wall and AJ came to her support. We consider it a positive social development. He is engaging with his surroundings aware of his sisters' pain. He has had several positive developments in the last several days. He's been asking more complex questions, why questions, where questions. He stood on one foot after his bath, looking at the bottom of his other foot. He did it without thinking, without hesitation, and without the typical startle reflex he used to display with only one foot on the ground. I asked him to check his other foot and he did without a problem. Six months ago in Yoga class he was nervous bringing one foot off the ground. His social awareness seems to have lept forward, along with some of his physical coordination. However, he lost, hopefully temporarily, some other skills. He has had a few accidents this week, after being accident free for months. Skills come in bunches, but at least they are coming. His emotions are still unpredictable, but seem to be calming down.

Autism, ADD/ADHD, PDD-NOD, Sensory Processing Disorders, and Chiropractic

Last night I attended a presentation by Dr. Charles Chapple called "The Structure and Function of Sensory Processing Disorders; From ADD to Autism." Dr. Chapple has published two papers in medical journals and is working on his third. One of the most important and interesting facts Dr. Chapple pointed out is the current medical diagnostic criteria for autistic spectrum disorders doesn't even include sensory problems. Most doctors would be familiar with the DSM-IV-TR which for Autism focuses mainly on delays in language, behavior, and social interaction. Dr. Chapple's talk pointed out the fact that by not even including the sensory piece most physicians are not even aware some of the root causes of the language, behavioral, and social issues can be traced to the central nervous system and missed milestones. The brain, brain stem, and central nervous system have not developed properly creating some of the symptoms. He outlined the normal nervous system development from the primitive instinctive brain to the fully developed reasoning brain. Showed how some of the behavours we see in our kids relate to an incomplete nervous system. All of the ASD kids I know have some kind of sensory issue. Somehow our ASD kids have gotten stuck. To me it is reasonable to assume assisting the complete development of the central nervous system can help alleviate some of ASD's effects. The other thing I really liked about Dr. Chapple's approach is that at no time did he sound like this is THE answer to Autism. He recognizes each child will need multiple therapy's and recovery will require an individual plan with multiple practitioners.

"Daddy, I ... I can't get...my shirt off."

AJ's eyes were welling up. He was taking short deep breaths through his mouth. His arms were partially raised above his head. He was overwhelmed. On the verge of crying. I reassured him, "It will be OK, AJ. I can help you. Show me what the problem is." He grabbed the end of his sleeve and pulled his arm in. He strained against the fabric, but his arm was stuck. He couldn't get it all the way out. This shirt has 3/4 length sleeves, unlike any of his other shirts. "See... see Dad ... I can't get ... my arm ... stuck." he choaked out trying not to cry and meltdown. He strained against the fabric and began shaking back and forth. "OK AJ you are right your arm is stuck. How can we try a different way. Maybe you can pull your shirt up first and then get your arm out. He lifted his arms up, pulled his shirt over his belly and struggled to free his right arm. All the tension released from his face and body as his arm came free. He gave me a warm gap-toothed smile. Said "OH" and ran happily off to get in his Epsom salt bath. To teach him to dress and undress we taught him first one arm, then your head then your other arm. When that didn't work he saw no other alternative and felt trapped. I have told him "can't is a four letter word we don't use in our house. We ask how can I... When you think can't you need to change to How can I and try something else." Hopefully with enough practice he will learn to come up with new ideas on his own.

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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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.