Monthly Archives: May 2015

My First “Autism” Movie

Posted on by autismodysseys

  
Many say that Rainman was the film that introduced them to “Autism”-  and while I saw it as a senior in high school, it didn’t make a huge impact. Alright, I’m not going to lie – Tom Cruise made an impact, the rest of the movie did not.

The movie that opened my eyes  was House of Cards in 1993 with Kathleen Turner and Tommy Lee Jones. The synopsis from IMBD:

When Ruth Matthews’s husband is killed in a fall at an archaeological dig, her daughter Sally handles her father’s death in a very odd manner. As Sally’s condition worsens, Ruth takes her to see Jake, an expert in childhood autism. Jake attempts to bring Sally out of her mental disarray through traditional therapy methods, but Ruth takes a different route. She risks her own sanity by attempting to enter her daughter’s mind and make sense of the seemingly bizarre things that Sally does, including building a wondrous house of cards.

For some reason, this movie stuck with me throughout the years and was my first thought whenever I heard the word Autism. I have not seen it since 1993 and I am curious as to what my impression of it will be now. I remember thinking how  difficult it would be to have an autistic child. It seemed so “foreign” and rare. Fast forward 20 years to when my twins were first diagnosed and it’s like a entirely different frontier. 

I’m putting this out there now based on my original 1993 viewing of it. I plan to watch it this weekend and compare what I know now, with the portrayal of autism in this movie.

When one twin gets held back…..

Posted on by autismodysseys

 I am the mother of identical twin sons, who are now 11 years old (they will be referred to as “C” and “R”). Both of them have an autism spectrum disorder diagnosis, but the level of impairment is different between the two (one is prone to anxiety and impulsiveness). After completing first grade, only one was able to be promoted to the next grade. The other, had to repeat first grade thereby beginning a spiral of events that I am still unclear as to how far-reaching the effects will be.

A little background on my twins – They were born at 33 weeks, but weighed over 5 pounds at birth and avoided time in the NICU. We were originally told they were fraternal twins because they had separate sacs and placentas –  a DNA test later confirmed they were identical. I learned that if the egg splits within the first 72 hours, you get the separate sacs and placentas. I found it interesting because I too, am an identical twin and identical twins happen randomly (I’m very random evidently).

Both boys were delayed reaching all of their developmental milestones (as was their older sister). What was always consistent was how C would work and work at something until he could finally do it. R would not noticeably work at something and then just do it one day. This happened with crawling, walking and talking, and still exists to a point, today. Their autism diagnosis came at age 3, which is the subject for another post.

They attended a preschool for kids with autism and then kindergarten at a school for kids with learning differences. Throughout this time, they had been in the same classroom primarily because there was just 1 class available. They continued to first grade  together where it quickly  became evident that they needed to be in separate classes. R had fits of aggression  that impacted his learning and completing assignments. He would knock over classroom furniture – C would get so upset about it, he had a difficult time focusing on his own work. Towards the end of the year, it was first brought up that R be held back because there wasn’t a way to seperate them otherwise.  We reluctantly agreed because the other choice was the public school system, which wasn’t an option as far as we were concerned.

We didn’t elaborate the following year when C started second grade, and R began first grade again. In fact they really didn’t ask about it until the end of the third/second grade year. At that time, they became very aware of it because they were asked by peers on a daily basis. That led to questions at home, which led to even more questions because they were now acutely aware of how things were supposed to be.

What am I going to do in the year that R is still in school? Do I have to wait for him to start college? Are we still twins even though we aren’t in the same grade? Why can’t R be moved ahead? Why can’t I move back a grade?

These questions are asked consistently and I wish I could answer them to their satisfaction. I have worried about the long term damage that could be done by this separation (mixed in all with the other dark-of-night worries). Unfortunately, at the time, it was something that needed to be done. Now that they are getting older, it’s like a invisible weight around our necks. They WANT to be in the same grade, I want them in the same grade. As they enter middle school, these questions amplify even though they will remain at the same school.

So, now what? There is no section covering this is in any book I have seen. I’m thinking I may have to write it myself.

  

A request to the autism community

Posted on by autismodysseys

imageYesterday was interesting with all the articles, shares, and talk about the family that was escorted off the United flight because of their “daughters autism”. Public opinion quickly divided. One side was completely outraged that an airline would “divert a flight because someone was autistic” I saw petitions, threats of lawsuit for discrimination etc. There were testimonies from the passengers that the girl wasn’t disruptive, which fed the public outcry.

The other side was quick to place the blame on the mother because she “should” have had the forethought to bring a heated meal for her daughter. I saw much of this side in emphatic comments on articles, posts etc.

It’s a true testament to the power of social media in that details were skewed to place the blame on one side.

Ironically, the entire reason for the diversion was NOT because of the girls actual behavior onboard the aircraft – it was because of what the mother said would happen if they didn’t accommodate her request. (Meltdown, scratching etc). The crew has to treat any comment by a passenger as a threat. (We’ve seen enough tragedy to understand why that is the case). Whether they could have done something to remedy the “threat” and continue to their final destination, I don’t know. I wasn’t there.

Being in the airline customer service sector prior to having kids, I feel that I can speak to what can happen when people travel via airline. It can bring out the absolute worst in people – not having “control” over situations. I’ve seen it innumerable times – I have even BEEN that person (last week as a matter of fact). So, I’m not going to speculate or judge the mother for what she may have done.

I’m not judging the flight crew either, for their decisions, because we DON’T know the entire story that led up to the video of the calm girl we saw being escorted off the plane. I’m definitely not going to judge a company and thousands of employees by the actions of 1 flight crew.

What I would like to see is for people to be objective about what happened – Instead of placing blame, try to understand where both sides were coming from so we can see where the breakdown may have occurred Then try to prevent it from happening to someone else in the future.

Why I love Five Nights At Freddy’s…..

Posted on by autismodysseys

  You may have heard your kids talking about this game in recent months ? It’s a strategy based jumpscare game where you are the security guard in a “chuckie cheese’esque” pizza place & have to “survive” nights. There are animatronic creatures that meander about and the player has to use their resources in order to not perish.

Little by little, my 4 kids (ranging in age from 8-13) began talking about it at home, in the car, at school….. It soon started to permeate every aspect of their lives (particularly the 3 younger ones). Before we allowed them to play the game, we made sure that it wasn’t too frightening for them since it is rated 12+ (it wasn’t for them). As with any obsession that makes its way into my house, I learned the “lingo” so I could look kind of cool to them. If nothing else, it gives me conversation starters to enter their world, which often is more successful in facilitating meaningful conversation.    

It started with plush things “staged” all over the house

 In all honesty, my husband and I don’t get the game, or the attraction of it. That’s ok, because We don’t NEED to get it. What is important, is that we “get”  their high level of interest in the game. Aside from the obsessive factor, we have seen some significant communication improvements in recent months. Such as:

1. Reciprocal conversations – this is perhaps the biggest area of change we have seen. My kids have long, detailed conversations about the characters. At first, it was in asking each other who their favorite animatronic was and why. This evolved into conversations about what animatronics they would create for their version of the game. Answers had to include details as eye color, animal type, background of the character and behaviorisms. If these details weren’t provided, they would be asked for them. These conversations occurred daily and they would take turns sharing their information.  This happened so frequently, we had to start giving my twins melatonin again because they would talk for hours in bed. 

 

One of the first times I have seen them united over a game

  2. Imagination – since this game isn’t completely commercialized yet, their desire for memorabilia wasn’t able to be fulfilled. On their own device, they scoured through their plush creatures and found ones they could use. Their next move was to make construction paper modifications to authenticate the characters. 

 

The modification process

   

They were proud of these,


Once these were done, they explored other medias together.

   

  

  

  

Their new undertaking is FNAF Cosplay so this will be updated when that happens. I’m trying to get them to document their ideas for future games

In conclusion, I love the fact that this game has motivated my children and given them the platform to stop, collaborate and listen (sorry about the Vanilla Ice lyrics there). One of my twins who has struggled with conversation skills, has recently initiated conversations with his teachers of whom were so impressed, they let me know immediately. These are the type of milestones that are important to our family, and if that motivation comes in the form of a video game, I am going to be its biggest fan.