Why Autism is like Lost. Wednesday, Jan 28 2009 

Let me start this one out by saying that I didn’t start watching the TV show Lost until mid December 2008.  A good friend had given my wife and I the first season DVDs as a gift the preceding Christmas, and I didn’t find time to watch them until almost the next Christmas!  You parents with kids on the spectrum can relate, I’m sure.  So, the wife watched 10 minutes of the pilot with me, saw the guy get sucked into the jet engine and said “I can’t handle this.”  That left me to watch by myself.  Naturally, loving a good story told by gifted writers and actors, I was hooked.  I have spent every free moment watching Lost for the past month, and I’ve managed to make it through all 4 seasons in time for season 5.

Now let’s start comparing the two.  First off, the characters are involved in a plane crash that strands them on a deserted island.  I feel like our plane, made of expectations for our son, crashed and left us stranded on the autism island.  Like the island, autism is a mystery, with scary possibilities and very real and concrete dangers attached to it.  Maybe there is no smoke monster, but there are plenty of other challenges!  Not just that, but immediately after the “crash” we were totally in shock.  However, once we saw the passengers, or our son, needed help, we sprang into action.  We started out a little like Jack, full of immediate solutions but no long range plan.  We were hoping to be rescued.

Then, as time passed, we began to accept that there was no rescue.  That’s when Hurley showed up, and told us to enjoy ourselves a little.  After all, the island is very lush and beautiful, and provides some opportunities for fun.  Once we began to understand how to play with Raymond, we started having a good time again.  The island also provides nourishment to the survivors.  The nourishment I have received from my son has been spiritual in nature, and has fundamentally changed my attitude and beliefs.  This seems similar to the way the people in the plane crash had to adapt to survive.

Now let’s talk about attitudes and philosophy.  My favorite character on the show, Locke, represents faith, belief and hope.  He knows the island has wonderful potential, and he has seen it heal him and others.  I feel in some ways that autism has done that for us.  I’m not trying to belittle the pain and suffering it causes, because it is hard on a family.  The divorce rate and financial woes are well documented.  However, when your dreams are shattered and reduced to nothing, you are forced to take stock of what you believe.  At that point you have to make a decision: Do I approach this with a poor attitude and live my life in misery, or do I approach this with hope and faith?  Hope, when realistic, is a powerful emotion.  Faith can move mountains.  I’m not talking about moving a mountain all at once.  I’m talking about waking up every day and carrying away a shovel full of dirt. Every day, without exception. That’s how mountains are moved.

We started small.  We hoped we could help our son learn to use verbs.  When he learned to use verbs, we tried to help him make short sentences.  He did that, and we moved on to the next goal.  That’s how we make progress.  Do we hope that he “recovers?” Yes, but if he doesn’t that doesn’t matter.  The concept of “recovery” is not the panacea some folks hope for, at least not in my mind.  Recovery for me is improving function to the point that the symptoms are gone, and the way to do that is to keep chipping away at it once piece at a time.

Back to the point, we know the island can heal people and work miracles.  I’ve seen miracles in my son since we started. Every time he looks at me and says “Hi Daddy” I get the same feeling I did when Locke first wiggled his toes, only 1000 times stronger.

Life is hard on the island, but luckily the survivors aren’t alone.  They have each other.  The other survivors are the people I talk to on the internet.  These people who, like me, don’t have time to go to meetings, protest, organize, or the like, but still want to help and do so online when they get a spare minute.  We know we might get off this island someday, but as long as we are on it we have to work together.  Live together, die apart.  So I want to thank my fellow survivors for helping me, telling me stories, warning me of dangers, and showing me pathways in the wilderness.

So if you’re new to this, I want you to know that there are other people on the island, and we will help you.  You have a choice in this.  Will you live moment to moment with doubt, like Jack, only acting when forced into a crisis?  Or will you choose faith and hope, like Locke, and me, and so many other folks who are on the island?


The Feingold Diet Phase 1: Week 2 Monday, Jan 26 2009 

Raymond lost in thought

Raymond lost in thought

Okay, this diet is amazing. We are getting some cognitive and creative things we have never seen before. However, there is still a down side. We are still having some behavior issues. However, after talking to his pediatrician last week, we feel that those may be due to the fact that these chemicals are passing out of his body, and once the six weeks of Phase 1 is over it should improve.
In fact, it has improved somewhat. We made one big discovery this week. Monday was tough, as he was active, all over the place, crying and out of sorts. Tuesday at about noon I knew something was going on. I called another mom we know who has been on the diet for years and started talking about what we were giving him, what his diet was like,etc. She had some great suggestions.
We had been giving Raymond a cup of lemonade in the morning with all his supplements, and then sending him off to school. This mom suggested that maybe he was getting too much sugar without the stabilizing influence of a protein. She said her kids were great as long as she paired her sugars and carbs with proteins. That made a lot of sense to me, so we tried it.
Wednesday we skipped the lemonade and sent a bagel with egg in to school for his breakfast. He had a turkey sandwich for lunch, and when he came home he was calmer, more possessed and more well behaved all the way around! Success!
We have since determined it is not just sugar, but he has a specific reaction to lemonade. I don’t know what it is, but we switched his drink to pineapple juice and he tolerates it better. He still needs protein, but its nothing like the lemonade.
We also had to take him off some of his supplements. This diet is more work intensive than anything I’ve done yet, but the rewards are outstanding. Raymond is pooping in the potty, which we had despaired of ever happening. He also has made some major changes in his art.
Raymond loves to draw, paint, color or do anything involving art. He normally draws trains. Although they are very detailed, he is totally limited in his subject matter unless we insist he draw something else. That is, until now. He spontaneously drew the front of trains, with faces, instead of the sides. He also drew mountains, animals, and people on his own. We were ecstatic!
Not only that, but he is also expressing a new interest in math. Raymond has always loved numbers, but now he is trying to add and subtract. We are overjoyed that he is finally growing this way, and look forward to more.
Oh, and I made one more discovery. Instead of sweetener in my pancake batter, I started using butternut squash puree. It is more fibrous and gives a greater nutritional value to the pancakes. Plus, Raymond can’t tell its in there and he loves them! Thanks to Jessica Seinfeld and her book Deceptively Delicious for the idea.

How it all started 4: What dreams may come Tuesday, Jan 20 2009 

Eleanor Roosevelt wrote “The future belongs to those who believe in the beauty of their dreams.”  I think she is right, because most folks don’t pursue dreams that they find hideous or malevolent.  This is one of the harder parts of our little journey, and it got really dark before the light started coming back again. 

In the middle of our darkness, two large family events occurred.  One was meeting my daughter, who I will not discuss here as I have not talked with her about this or gotten her permission.  Short form is this: I met my 16 year old daughter for the first time when Raymond was 2, so right in the middle of this we had those family issues to deal with. It was tough, and we handled some things well and some things poorly, and that’s where I’m going to leave that for the purposes of this blog.

The second major hit was my wife was diagnosed with panic disorder.  I’m not going to delve too deeply into that either, because I haven’t really talked to her about publishing this, but we had to really restructure our lives and change many of our methods to help relieve stress on her and create a haven in our home.  Without getting too specific, we had to learn how to come together in a crisis instead of attacking each other.  I can state for an absolute fact that if we hadn’t learned how to do this, we would be divorced today.

I mention this last part because my wife’s panic disorder ironically ended up helping us in a major way.  It introduced her to her therapist, who is now our therapist.  I highly recommend therapy for those of you that can afford it and are going through this.  Not necessarily for the “magical psychology fix” that people seem to expect from therapists.  Mainly because it is helpful to have a third party hear what you are going through and reinforce that it is terrible, it is difficult, and you are doing the right thing.  Also, having a referee to help sort out tougher issues is really a good way to get some positive dialogue on an emotional subject.  We have been seeing him for over 2 years now, and it has really helped us keep the lines of communication open.

I finally started to wake up from my funk about October 2006.  We first heard the word autism in February 2006, and I had been researching furiously since then.  We had managed to implement some changes for Raymond in spite of my denial, and a big part of that came from another accidental discovery.  Raymond came down with a nasty rotavirus in late spring of 2006, and ended up in the hospital due to starvation and dehydration.  He literally could not eat or drink without throwing up.  Once we got out of the hospital, our pediatrician told us to double his dose of probiotic.  We did, and we got more language and more eye contact!  That’s when I started considering the possibility that biomedical intervention might help him.

I also have to credit my wife during this time.  She never gave up, and approached the subject from every different angle imaginable to help me see.  She was researching as much as me, and through that learning I finally began to figure out what was wrong with Raymond.  We got in some pretty nasty fights, and those who know me can attest to my acerbic wit.  However, by October I was ready to step out of the darkness and help move Raymond into the light.

The funny thing about it is how much better I felt after accepting things.  It took some time to understand that the end of my expectations was not the end of my family. I understand now that there is always a future, and in most cases it will have surprises, some pleasant and some unpleasant.   However, I am happier now that I accept my son’s condition as a part of his life.  Autism is a part of my son, but not his all. Some people can only see that limitation, but thanks to what I have been through I see only possibility.

The Feingold Diet Phase 1: The first week Monday, Jan 19 2009 

Okay, since I haven’t posted much over the holidays I will try to make up for lost time this week.  First off, we started back on vision therapy with Dr. Kaplan, and visited his office in lovely Tarrytown NY last weekend. We had a great visit, and our new vision exercises are much easier than the last set.

Second, we started the Feingold diet.  For those of you who are not familiar, the Feingold diet was designed by Doctor Feingold, an allergist at San Francisco’s Kaiser Permanente Medical Center.  He began working with patients who he thought had aspirin sensitivities, and discovered that many of these patients also had allergies to various food dyes and additives.  Next, he documented changes in behavior due to the allergic reactions.

The Feingold diet eliminates ALL food dyes, food additives, artificial colors, artificial preservatives and artificial sweeteners. Additionally, it removes foods that contain salicylate, which is a substance similar to aspirin. Oddly enough, many foods contain salicylate, which came as a huge surprise to me.  Apparently salicylate is a natural pesticide that plants produce to protect themselves from insects.

Anyway, we got started a few weeks back when we described some behavior to our pediatrician.  Raymond and I had just come home one day, and Raymond promply went and sat down beside one of our friends.  Then, after a few times of his mother saying “Raymond” he looked up and said “Mommy!”  Then he quickly ran over to his mother and sat beside her.  We believed that, since our friend was sitting in his mother’s usual seat, he assumed she was his mom and didn’t do any visual “follow up.”  We have seen this sort of tuned out behavior a number of times with Raymond, and his pediatrician commented that it was typical for kids with ADD/ADHD.  That led her to begin questioning his diet more, and we settled on Feingold as it has been shown to be effective in treating ADD/ADHD.

Next step was to join the Feingold Association. The link is http://www.feingold.org and costs $82.50 to join.  Believe me, that is money well spent.  These folks investigate food more thoroughly than any other group I’ve ever encountered.  So we joined and our books arrived a few days later.  We received the general guidelines to the diet and a foodlist, as well as a restaurant guide.  The restaurant guide was pretty thin, as most restaurants use stuff that is off the diet.

The next step was to take an entire sunday and create a menu, shop, clean out the cupboards and prepare foods.  Let me tell you, that is too much for one day.  We only got a 5 day menu done, but it did help us become really familiar with what Raymond could and could not eat. We made a shopping list, and hit the store.  Then, since we don’t have any local breads that fit the bill, we spent the rest of the day baking bread and cleaning out the pantry. We gave away a huge box of food, and threw away about half that.  We were careful to keep things that are allowed on stage 2, but since the pantry had mostly processed foods that didn’t apply very often.

After that, we started the school week!  We decided to follow the diet as well, thus reducing the possibility of having something in the house that was off the list. One of the first things we noticed monday was how calm Raymond was!  According to the literature, some changes may be immediate, some may occur over several days and some may several weeks.  Apparently many of these chemicals accumulate in the body, and it takes time for the body to shed them.  At any rate, Raymond was wonderful on the first day until…

We went to our pediatrician’s office to pick up some supplements.  We set Raymond up with some magic markers to color while we talked to her.  As soon as he got some marker on his skin he became uncontrollable.  We racked our brains until we put 2 and 2 together.  The markers are full of artificial coloring!  We got Raymond home and calmed down, and then realized we had a bigger job ahead of us.

Many of these additives are also present in cleaning products, soaps and other household items.  We have a fairly toxin free home, as we have weeded out all of the paraben, phthalate and sulfate products in addition to removing all chemical cleaners, candles and soaps.  However, there were still some additives in his soap, shampoo and other things that he couldn’t tolerate.  We lived with them for the week, but I’m happy to say that after a trip to Whole Foods (and a ridiculous amount of money) we finally have a clean environment for the diet.

Tuesday was rough.  It almost seemed like Raymond was going through some withdrawal.  Wednesday was better, although he was still a little off.  Thursday was wonderful.  Not only did we have school, but he also had speech and OT.  He did great in speech, but would not cooperate with his OT until she found some trains. Still, the fact that he was able to do both therapies in one day in addition to the work we did at home says a lot about his ability to concentrate and sustain activity.

Friday was a nightmare, which didn’t make sense to me.  He woke up in a good mood, and was great all the way to school. When I picked him up, his teacher and para both told me that he had a rough day, which didn’t jive with what I experienced that morning.  It bothered me so much that I called back about an hour after we got home.  Raymond was wired and on edge.  I’m sure plenty of parents have had days like that, where your kid is into everything, climbing the furniture and doing everything he knows not to do.  Well triple that and you have our friday!

My first thought was that he had a dietary challenge. So I called the school and spoke with his para, who said he definitely didn’t have any food off the list.  Then I thought about the markers, and asked about that.  Then she said that he did get some marker on his hand, but it wasn’t very much.  I knew it didn’t take much, but somehow felt there had to be more to it.  After all, Raymond had marker on his hand earlier in the week and it hadn’t been this bad.

Then the teacher called back and we went through the day step by step.  Apparently one of the kids had an accident in the bathroom, and they had to call the custodial staff.  Then, after they left, the teacher sprayed lysol all over the bathroom.  That clicked with my wife, as she had spoken with another mom who has a very sensitive child, and lysol has a number of chemicals that affect her kid.  Finally we knew!  We explained to the teacher what happened, and why he was so difficult, which was a relief.

Saturday and Sunday were okay, but we did eat out at a restaurant for the first time since starting the diet.  Let me tell you, that is tough.  One of the stage one no-nos is tomatos, which are tough to avoid in an italian restaurant!  Still we got by, and Raymond had a good weekend. We’ll see how this week goes.

A few words on style Monday, Jan 19 2009 

A few people have asked me why I chose the fleur de lis as the symbol of my son’s blog.  Many people associate the symbol with Mardi Gras, or France in general.  However, I do not use it for that purpose, but prefer to return closer to the symbol’s roots.

First off, the fleur de lis is typically the symbol for a lily.  It translates from french as “lily flower.” Lilies typically denote peace, which is part of what we are trying to accomplish for our son.  We want him to be able to experience rest, relaxation and mental calmness, which is a big part of our journey.  It is one of the most difficult steps on the path, because he is a nonstop dynamo, constantly in motion.

Second, and more importantly, the fleur de lis is often used on compasses to denote “north.”  My hope is that this blog will serve as a compass for my wife and I, and help us remember which direction we are going.  It also reminds us of where we have been and what waypoints we have passed, and will hopefully help us stay on the path we have chosen.

Finally, since these questions forced me to dig a little deeper into the fleur de lis (thanks, wikipedia!) I have begun attributing a third meaning to the symbol.  Apparently it is an international symbol of scouting.  That seems fortuitous to me, and a good omen, if you believe in that sort of thing.  The reason I say that is that I often feel like we are searching a vast forest for a hidden path that will help our son.  Since we are having some success, I think we are decent scouts, at least on an intellectual level.  Also, we are succeeding in rescuing our son from his wilderness and guiding him back to civilization, so I think that one works on a few levels.

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