long time, no post

Nothing new here, just continuing to try to change our world. I met up with a girlfriend from HS for lunch (several of us really) and the one does vision therapy for autistic children. She has a ton of tricks to teach me that help with all different aspects of the spectrum. I have to give her my list of issues so she can gather some techniques for us to try.

How exciting is that?! I will share everything I learn!

On other notes, today was both good and bad. He is very on today, but also very easily annoyed and his annoyance instantly turns into huge frustrated fit. Tonight I had to hold him tight, which I still don't understand the concept of how this works, but it really does work. In general he pulls away when you try to hug or hold him just to love him, but when he is melting down if you hold him super tight he calms. I have been doing this trick since he was little, before I even know why or what it was helping.

One step at a time.

On a perfectly wonderful note - here is the reason why I love him so much --
He is the best over complimenter and over worrier in the world. For example, there is a boy in his class who is always getting in trouble. We he decided that it is his job to teach this boy how to behave because he knows that the boy's life will be better if he would only learn how to behave. He has been putting together little motivators for this boy and his newest motivator is for me to throw a party at home for the class if the boy can go one whole day without getting in trouble.

We're still dealing with the noise. I'm trying to teach him calming techniques that he can do himself when it gets to loud to help calm himself.

Any ideas are appreciated!

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/

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.

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!

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.

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

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.