From here to there

Well, its a new year. I never get caught up in the hubbub of new years resolutions or even of new years for the matter. I love the idea of cleaning and cooking on new years eve to sit, relax, and enjoy new years day with family. I usually try and do some sort of Japanese feast, but this year Peter’s parents were here and we made a grand Egyptian feast. Actually, I was just sous chef to the event. Learned alot though.

The way in which one day O can wake up and be so happy, then turn on a dime is such a huge mystery to me. We went to see Alvin and the Chipmunks The Squeakuel. A high quality movie. We went with my mother in law it was her first outside experience with O ‘flipping out’. He was really unsettled during the movie. Then after the movie he was spacing out. A lot. There was a water fountain at Bellevue Square and he was somewhat mesmerized by it and didn’t want to move from it. Finally, I coerced him to go to the bathroom as he was doing the potty dance. We found a restaurant for lunch and he wouldn’t have it. Almost kicked the table over. The waitress was so cooperative. As soon as the food came, I looked at her and said, ‘I don’t know how long we’re going to last here, so could you please bring the check and some take out plates in case we have to bolt’. Thank goodness she was very helpful and we ended up having to leave early. O was yelling and was physically escalating into a tantrum. I was in a ‘high alert’ parenting mode. I was contemplating which would be the safest route to the car…carrying him up two flights of stairs, and crossing the sky bridge, through the building, up an escalator, over another sky bridge, down an elevator to the car. Or, we could walk across two very busy crosswalks then down the elevator to the car.  I chose the latter because I didn’t have the physical strength to contain him for a long period of time. I was thinking, ‘which is worse, jumping over the sky bridge, or running out in the middle of the intersection’!! We made it to the parking garage. Holding on tight. But then I forgot where I parked the car!!! Went to P5, not there, P4, not there, P3, still not there. Everyone was losing it. Finally found it on P2. Then we got in the car and he would NOT wear his seat belt. I pulled out my book, read a page, and asked him if he was ready then. ‘Okay, I’m ready now’ was his answer. Don’t know what set him off, but I’m beginning to recognize some of the beginning signs of when he might have a tantrum. The covering of the ears is a big one. Even if something isn’t that loud, he covers his ears tightly with his hands. Like he wants to separate himself from the situation. From there he seems to start shouting more than usual. I think that at that point is when we should change venues. I think that my mother in law felt helpless as she watched this whole incident unfold. To understand that someone has autism in theory is very different from watching an autistic tantrum evolve before you and be powerless to it. He started to cover his ears during the movie a lot. I thought that it may have been too loud. That is probably partially true. Another piece to the puzzle.

There has been quite a bit on autism on the news in the past few weeks. It’s hard to decipher what is true and what studies were manipulated to prove a point of view. I’m very suspect about studies. The latest report out is that there is a lack of evidence that special diets work to help in autistic children. What I got out of the article is that there just isn’t enough information to say one way or the other. This is good, because it states that we need more information and more research in this area. Enterocolitis, or leaky gut, as it is called, is this kind of pain that O seems to suffer from. Random, IBS like pain. There are theories on ways to help. But, in researching these theories, I’m constantly looking at the sources of the information. Not very much of it is yet substantiated. I would love to meet someone for whom any of these therapies worked for.

I’ve started to substitute gluten products, like bread, etc, for gluten-free alternatives. Successfully so far!  Today he had gluten-free cereal for breakfast. For lunch, quinoa pasta (it was actually pretty good.  E and I ate it, too!) He even ate some gluten-free bread with his peanut butter and jam sandwich! For dinner gluten free bread, peas, and cheese. Then he saw Daddy eating a delicious macaroni with bechamel sauce that grandma made and he ate some of that.  But, that was the ONLY gluten food that he ate today. That was better than I thought that we’d do today. My goal is to gradually replace all gluten foods with a non-gluten version whenever possible at home.  The challenge is going to be the ‘if I see it, I want it’ way of eating that O (and most kids) have. I am sure that there will be other challenges in this that I haven’t even considered yet. That’s what makes this a challenge.

I don’t want to set a date for the diet, or for anything for that matter because I want to remove the pressure to go all or nothing. I don’t want to feel the sense of urgency to ‘heal’ my son of autism that I am receiving. I think that the last thing that O needs is me being anxious. I have enough anxiety as it is, no extra anxiety please.

What O does need is us to feel confident in our choices. Indeed, there are certain behaviors that we need to work on. The tantrums, the OCD, the eye contact, socialization, etc, etc, the list goes on. It is my belief at this very moment that there is no cure for autism. If there is, I’ll be thrilled, but prove it to me. I continue to look into secretin therapy. I hear so many mixed reviews of it. Some places (websites) state that 85% of the children on the therapy see very positive results. Great! That site states that they actually only take the secretin for 2 weeks, then continue the vitamin therapy. Our doctor researched it a bit and found that the therapy ran $200/month and had to continued indefinitely, and had only found one positive case study. Hmmm…you can tell that I have more to research here.

2 thoughts on “From here to there

  1. Mom

    You are so perceptive! I am thinking back to when I tried to take him to a movie and he did the same thing, putting his hands over his ears. Then he sat in the aisle and was very unsettled. We casually left at that point when he said he didn’t want to see it. I am also sensitive to loud sounds, and I thought the sound was too loud. Maybe we all have a little autism in us! I am sorry you had that experience. I haven’t seen this for a long time. He was such a gem yesterday getting onto the bus and going off by himself to school. (However, I was already to go with him, if necessary). Love you and admire you. Mom

  2. Mark Houghton

    Hi Karen!

    Twoey passed along your blog so I thought I’d say hi. My 9 year old is Autistic so I know a lot of what you are experiencing. Feel free to email me.

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