Thursday, January 29, 2009

high fructose corn syrup

A friend shared this interesting link (thanks Hartley!): this article is also found on the Washington Post
http://www.organicconsumers.org/articles/article_16627.cfm
http://www.washingtonpost.com/wp-dyn/content/article/2009/01/26/AR2009012601831.html

So, how difficult is it to go HFCS free? I am putting this to the test and am going to pay close attention to everything I buy and we eat. Cutting this out of our diets has to help!

So long Yoplait yogurt!

I like this quote: "While there are a few slightly more terrible liquids out there - lighter fluid, for example..."

I will keep you posted on how it goes.

Some additional resources:
http://www.westonaprice.org/modernfood/highfructose.html
http://www.marksdailyapple.com/sneaky-syrup/

Monday, January 26, 2009

memorizing

Thank goodness for the ability to memorize everything, which is one of my son's strongest points! We would never ever ever EVER survive spelling tests without his ability to memorize words.

Is it ok that he is learning words through memorization and not through phonics? We do try to keep spelling the words out to him. With phonics alone he gets halfway through spelling the word and forgets what word he was spelling and loses focus.

Wednesday, January 21, 2009

sensory issues

It is interesting to find out now that all of the oddball things that my son do could be due to "something" instead of just stubbornness. My newest quest is to try to find ways to help him deal with whatever sensory issue is causing the below...

1. noise issues - he hates loud places and school is proving to be very difficult, specifically the lunchroom. He has social skills issues so I want to try to do everything possible to make it so he doesnt stick out in the crowd, but I also don't want the solution to be that he eats alone with the teacher. It seems like the lunchroom is a golden opportunity for socializing if he #1 has the want and #2 can handle the noise. At first we allowed him to listen to his mp3 player during lunch, but then he said he didn't need it. However, he has again started to get irritated by the noise, which could be because they aren't able to go outside after lunch due to the cold. I have thought about getting him little earplugs that he could keep in his pocket just in case he needs them. Any other ideas?
2. messy eating - I would love for him to be able to eat/drink something without needing to use his fingers to touch it first...how great would that be! It would also save us on all of the uniform shirts that have gotten ruined this year -- I think we are up to 8 throw aways now! This isnt a big issue though, but could start to add to the social skills issues as he gets a little older.


Crisis occurring, will post more soon!

Tuesday, January 20, 2009

not a good start to the day

This morning we got to school and Boy realized he left his science homework at home. I should have triple checked everything like I normally do, but the long weekend really made me forget the routine. He was instantly upset, even though other kids had also forgotten. He is an extreme rule follower so forgetting homework really ends up making for a crappy day!

I like to think that the look in his eyes upon forgetting his homework will make me that much more diligent in making sure he does not forget again, but here is one of those "learn and live" situations that he can learn from. Just like any parent you want your children to learn by the mistakes they make - "oh you forgot your homework and it made you feel awful, then next time you will make sure you check before we leave".

The hardest part of all of this is picking and choosing the battle. There is nothing more valuable in life than these lessons that we learn to deal with as children, but I find that I sometimes shield him from these things because the lesson learned does not feel as important as the potential tantrum/meltdown it would cause.



Monday, January 19, 2009

terminology to know

When my son was first diagnosed there was so much lingo that flew around between doctors, teachers, counselors that I was completely lost. I was constantly googling everything that I heard to try to learn as much as I could about what "everyone" was talking about. In addition to resources seemingly being available only to a special inside group (I know that is truly not the case, but from my end it seems like there is this elite group of individuals who have all of the answers and are secretly holding them in a vault with limited access) there is also an entire language that only this special group of people knows and understands.

With all of that said, it is amazing how easily you will start to throw about the lingo once you have learned in. In a previous post I mentioned that you will do it to feel as though you know and understand the spectrum...no matter how much I read or research, I don't think I will ever have enough understanding of any of this.

I thought I would put together a helpful list of terminology and its meaning for anyone to reference, so here it is. If anyone has anything to add, please let me know!

Happy Bloggin'!

Words to know to sound like you understand what the heck is going on:
Neurotypical: individuals not diagnosed with a disorder
Presents: displays, exhibits
on the spectrum: a diagnosis that falls within the autism spectrum
ASD: Autism Spectrum Disorder
OT: Occupational Therapist
IEP: Individualized Educational Program
SI: Sensory Integration

Sunday, January 18, 2009

how does he present?

Present is a word that is thrown around often in relation to the spectrum disorders and it is funny how quickly you also start to use it. I wonder if it is just to sound like you know something about what your child is going through, even though I imagine most of us are quite as clueless as the next, but "present" certainly makes you sound as if you have endless amounts of secret knowledge buried inside of you.

So anyway, below are some of the characteristics my son presents with... (I started this list and realized how extensive it could become so below is not truly ALL of the characteristics that we have found, but some of them and I will continue to add to this).
  1. Obsessions - even at an early age we noticed this. It started with batteries and remote controls and for a time we were worried that he would grow up be a TV repair man because how could he ever want to be anything else with such a great love of batteries and remote controls!
  2. Rocking, hand flapping - from what I have read these characteristics are not typically associated with Aspergers and are more so related to Autism, but come on...there is nothing "typical" about anything on the spectrum disorder. It started with the rocking....just rocking upon rocking upon rocking. Sitting on the couch he will rock and rock and rock, driving in the car he rocks and rocks and rocks. It seems to soothe him. It is amazing that he can rock so strongly and still be able to focus on TV. Looking back at when he was an infant I can remember that he was only content to fall asleep if I rocked him quickly. For quite a long time I thought that I was the cause of his rocking behavior. I'm not sure when it happened, but he developed a hand flapping "thing" that he does. It's kind of like a really excited clapping flappy thing.
  3. Lacking imaginative play - he never played with toys in the "traditional" sense. He played with batteries and remotes, he took video cases to bed with him and "snuggled" them and he never played with the Little People. He lined things up, perfect rows in specific order over and over and over again. I will never forget when he was maybe 18mths or so and we had a playdate with a girl friend of us 2 weeks younger than him. She was playing with the Little People Carnival and she took the clown, put him on the ferris wheel, and spun him around. Watching her do that was shocking to me. I will never forget that moment because I sat back and though "Huh, look at that." My son had never ever done that and still to this day would never do that. His obsession now is Star Wars and watching him you wouldn't instantly catch the lack of imaginative play (this is why it took us so long to figure it out!) because he could play for hours with a lightsaber...but if you watch very closely you will realize that he is acting out the movie, verbatim. There is no changing the scrip, there is no veering off the dialog, and heaven help you if you dare try to make Darth Vader kill Luke...enough said!
  4. Social Awkwardness - my son loves other kids and has a true desire to make friends. For the longest time my husband and I would joke "Uhoh, here comes stalker boy" because our son would tell us that he wanted to make friends with someone and that meant that he would walk circles around them from three feet away, whispering off to the side "Hey kid, want to play something", which really only seemed to weird the parents out. This is the hardest of all of the characteristics because I see in his eyes the desire to make friends, but he just feels helpless on how to make it happen. He will often ask us to help him befriend someone. This worked for a while because he was so young, but as he gets older we need to help him build skills to make this less terrifying.
  5. Lack in eye contact - this is a hard one to point out sometimes and we were not strong believers for quite a while. When he talks to us, he has moments of great eye contact, but that is because of his comfort level with us and even sometimes he is too flustered to talk and connect even with us. I recently went to a seminar about Aspergers and the speaker gave us an exercise that I think is extremely helpful in demonstrating how difficult eye contact can be for these children, here it is: We had to discuss at our table how we felt the seminar was going, did we like it, not like it, etc. The twist was that whatever words we said could not contain the letter 'n' in any part of the word. Try it, you will see how difficult it is to try to organize your thoughts, make eye contact, and generally follow the typical set of social interaction skills that we develop through interacting with people. You will find that you will stare off, look at your hands, the table, anywhere but at someone as you try to figure out what to say next.

interesting discoveries

So occasionally I leaf through my Sensory Processing Disorder Answer Book and randomly read answers to typical questions that are asked of the disorder. Today I opened the book to page 150 and a question immediately jumped out at me: "Why does my child have to strip off all his clothes before he can go poop?" Yes, please tell me why that is because up until this very moment I never associated the odd way that Boy has to go to the bathroom as being sensory processing related. I was so excited that I instantly called my husband and his response was "No kidding?!".

For anyone who knows him, they know that this is definitely a trait of his. While on vacation last year driving to Florida, my Father-in-law volunteered to take him to the bathroom while we were eating breakfast...he quickly came right back out laughing hysterically that Boy had to get completed naked before he could do the deed. I can't wait to share this finding with them!

So the answer, for any of you who also have a similar issue - "...there are two possibilities that he may be experiencing: under-responsiveness or over-responsiveness from tactile/proprioceptive input. If he is under-responsive to sensory input, it may take more concentration than normal for his nervous system to register internal processing such as a bowel movement. Removing his clothes allows him to register that information and go to the bathroom easier. If he is over-responsive to sensory input, it may be overwhelming for him to process the bowel movement as well as take in the sensory input from his clothes. (Some children who are over-responsive remove all of their clothes, turn off the light and demand complete silence)."

Overall, this is a private experience and as such you should always respect the child's wishes when appropriate.

Saturday, January 17, 2009

a time for healing

Our son was diagnosed with Asperger's syndrome June 2008 and looking back now I often wonder why it was not more obvious to us because now it seems as though there could have never been a different diagnosis. I suppose it was because of our lack of understanding of autism and aspergers, not to mention the lack of resources available even now...there was really nothing to point us in the right direction. Things that I think of now that are so blatantly obvious, I had no idea they were a clue to this puzzle. I hope that whatever I find out through this journey, this process, I hope that whatever I blog here may help someone else.

Looking back now I can see that his quirky habits were much more than that. He was our first child so we were clueless. At a year he owned every possible toy you could imagine a one year old could own, but instead of imaginative play with these toys he preferred to play with batteries and remote controls. He spent endless amounts of time taking the remote apart and putting it back together again. Even to this day he is fascinated with batteries and gets nervous if a remote or controller is the slightest bit in need of a new one.

Batteries were his first obsession, next came Baby Einstein, but instead of obsessing over watching the videos he would obsess over arranging them. Lining them up, stacking them up all very specifically and he knew whenever one was the slightest bit out of order. He also obsessed over sleeping with the cases in his bed. At age 4 he struggled with writing his name in preschool, but could spend hours at the table writing the various Baby Einstein movie titles on paper...strictly from memory.

He could memorize anything and everything. It seemed as soon as he could talk he could navigate the car for us, telling us insistently that we were going the wrong way to a destination if we chose a different route. He could memorize music and songs with amazing ability. Schoolhouse Rock became an obsession and he could recite each and every song, even the obscure ones. My husband and I would joke that we could teach him physics if we could just sing it to him.

He was always so talkative, so much to the point that he would tell everyone our business, everything about us. In 4 y/o preschool he told us all about all of the friends that he had, but at the end of preschool the teacher informed us that he was the only kid to never make a friend. We thought she was crazy because of course he had made friends, he talked about them to no end. What we did not realize was that he wouldn't interact with the kids, but instead would watch from the sides and to him he had made numerous friends simply by watching them play.

He has a late birthday so the school recommended developmental kindergarten and we agreed that it would be beneficial. By the end of that year the teacher suggested that he might be autistic, but it would not be until the end of kindergarten that we would get a diagnosis.

We were so afraid to hear the words, so afraid of what the label would mean, but now we have realized that the label isn't bad at all. He is by far the coolest kid that we know and that most of our friends know. He has his quirks for sure, but beyond those quirks he has the most amazing abilities.

There is nothing "wrong" with a child with Aspergers, they simply see the world differently than the typical person. They are just as normal as any other child. Everyone is different, everyone learns differently, everyone has their own quirky thing...if we weren't all different, how boring would the world be?

We have to be advocates for our children and attempt to give them the means to be the happiest people they can become. My hope is to provide him with the tools he needs to feel comfortable and confident in his own skin and that should be the goal of all parents, whether their children are neurotypical or not.