Martian Child and Autism Acceptance (Journal #62)

It was a rainy day...a day deserving of making yet another appearance at our local theatre. Yes, even after last weeks attempt at "Mimzy", Disneys "The Robinson's" has been on our list for awhile. To add risk to this outing, our theatre was showing the digital 3D version. Let's just say that Sam gave it a big 2 thumbs up. But that was not the only thing that touched me at the theatre today...it was the previews. I was in tears during a preview for the first time ever.

Maybe I am a little behind the news, but I knew nothing of this new movie coming out in June, called Martian Child. You have already seen the trailer attached. I don't know about you, but this was screaming "acceptance" to me loud and proud. This little child, whether he is from Mars or not, sure does resemble a unique and special child who could be autistic or have Asperger's Syndrome. The lengthy trailer at the theatre displayed this adorable child in a manner that reminded me of some of the interesting, cute and quirky things that Sam does or would do. The way he examines his world like the boy checking out the trees in the car. How he appears to wear sunglasses frequently, reminding me of Sam's sensitivity that he used to have to light. The way the boy just wants to have a family and learn human"ness". I believe all our little ones are like that. I am telling ya, I had tears from the stupid preview, I can't imagine what the movie will be like.

But what I hope the movie "really" is like...is that it teaches the world a lesson on acceptance of everyone, not tolerance ( I HATE that word, we should never just tolerate others), but acceptance...acceptance for everyone- autistic or neurotypical, black or white, Jew or gentile, rich or poor, short or tall, skinny or large...but all.

The line that caught me in the preview was when the little boy says to John Cusack, "Is it good to be like everyone else?"

I can't wait to see this movie!

A Twist of Faith
With Holy Week here, I hope everyone is reminded of that incredible Savior who wasn't accepted nor tolerated and was put on the cross. Put there in fact, so that we all may live a life full of acceptance and love for everyone.

Rated S.O. (Journal # 61)

As I have stated in earlier posts, we have learned to do a lot of things in our family in pairs. Zach and Brent do an activity while Sam and I do another activity. This, mostly because we want to respect Sam's needs and how he will handle certain situations. We have learned that there are some things that we won't try to do as a family because it would be too much for him and one of us would end up leaving with him.

However...family time is so important for us, that we have forced Sam to like a couple areas that the rest of us love, for the sake of doing it as a family. One thing we do "as family" is make sure we hit every family feature film as soon as it comes out. Sam has learned how to handle the previews. He covers his ears and then has me put my hands over his for extra support. The next time you go to the movies, check it out...the previews really are louder than the movie.

This past weekend we hit the theatres, with me convincing the men in my family that "The Last Mimzy" was a better choice than "TMNT (Teenage Mutant Ninja Turtles)". Uggg, being the mother of boys. Well my charm won all three of my boys over, and I got my way (or did I?).

This is a warning to all parents of autistic little ones. "The Last Mimzy" is not autism friendly. Sam and I had to leave a little before halfway through. For our little ones that deal with a lot of sensory issues, this movie has them. There are lots of flashing lights, blue and white to be specific. Along with the flashing lights of Mimzy's gear comes a high pitched hum whenever the Mimzy stuff communicates (which is a lot). It was just too much for Sam. So, instead of just rating this movie PG, it should also be rated S.O. for sensory overload!

On a side note. I didn't want to leave. I had loved the movie up to that point, and it also received high reviews from Zach and Brent, so on a personal note, I would still recommend this movie (just not for our little ones who already have sensory issues).

A Twist of Faith
Sometimes we learn through trial and error. I don't believe that it is error in having Sam learn to enjoy the things we like as a family at times, as he is part of our family. God created us to be together as a family. Just as we are learning about his world, he too is always learning about ours. What was an error was us not really checking out the reviews for that type of setting.

Let us consider how to provoke one another to love and good deeds, not neglecting to meet together, as is the habit of some, but encouraging one another, and all the more as you see the Day approaching.

-Hebrews 10:24-25 (NRSV)

Ch-Ch-Ch-Ch-Changes.....Part 2 (Journal #60)

“When you’re finished changing, you’re finished.”—Benjamin Franklin

....as David Bowie sang, "Ch-Ch-Ch-Ch-Changes...." I hope are coming our way. We have made some changes with Sam this week.... (This was the beginning of my post on February 28)

Just wanting to do an update since we have started Risperdal. Have received lots of e-mails from those of you who have had experience with it, and we want to thank you all for them.

At this point, we are still in the honeymoon stage. Sam started it a month ago next week. We have our follow-up appointment with our pediatrician to see how things are going next Friday.

Dosing:
Sam is on .5 mg a day in tablet form. We have the option of increasing to 2 tablets a day for 1.0 mg. We started out with low dosing, increasing every 3-5 days to where we are. We have been at this level for a full 2 weeks. If things change, we will then increase to 1.0 mg a day.

The honeymoon:
We have been "amazed" at the difference seen in Sam. We are pinching ourselves and almost trying to be a little apprehensive, so that we aren't too disappointed if the honeymoon ends. The two behaviors we wanted it to address have worked at this point (knock on wood).

Behavior 1~ When he is having melt downs (was averaging 2 major ones a day that would and could last at least an hour each time), he has become very violent, and quickly hurts anyone and anything in his way.
Ch-Ch-Ch-Changes~ We have had only 2 items thrown in a month and nobody else hurt in that time (big brother, usually the target, is very grateful).

Behavior 2~ During his melt downs, he has become self injurous (not uncommon among autistic children), but to the point that they were increasing in degree. They would range from head ramming, hitting self, to throwing himself down the stairs.
Ch-Ch-Ch-Changes~ He has not hurt himself once in a month.

It was incredible in church on Sunday to hear people telling me that they were noticing something different about Sam. He seemed happier they said. They also commented that it appeared as though he were interacting more too. I speculate that he isn't feeling the anxiety and frustration that would lead to the melt downs. Hence, we have a little boy feeling more comfortable expressing himself with others, even if they don't understand him at first and even if he isn't sure how to.

It is not that this is "the miracle drug", and I know medications are not the route for everyone...but for us right now, we are thankful for the Ch-Ch-Ch-Changes. We continue with our other therapies as well, but this has been a change we have waited for.

A Twist of Faith
Just as autism is treated in many forms, behaviorally to medically, there is not just one tride and true method that provides therapy and treatment for this disease. Each child with autism has a variety of symptoms and degrees of each. The point is that there are many ways to work with the whole child.

Faith is the same. There is not just one way that we seek God and worship him. There are many. What is important is that we intentionally seek him out in all areas, including daily prayer, worship and service. We have to be many things to him, not just one mode.

Medications aren't our only source of work with Sam, and prayer, worship, or service can't be the only source of work for God. It must be many combinations in all those areas, and in many ways, that is in constant service. For one to say "I pray", that is good enough, is never good enough (that is just my personal belief). We should always have Christ as our focus in all that we do.

We know that all things work together for good for those who love God, who are called according to his purpose.

-Romans 8:28 (NRSV)