Saturday, March 31, 2007

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 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 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.

Sunday, March 25, 2007

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. 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)

Wednesday, March 21, 2007

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

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

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)

Tuesday, March 13, 2007

The Candle (Journal #59)

The thing that I had decided since Sam was 2 , was that he was going to learn to talk, he was going to use words and not screams to communicate. From age 2 to 3 years, there wasn't a whole lot of progress until we received our autism diagnosis around 3. After learning everything we could about autism, I then decided that, not only was he going to learn to talk, he was going to have receptive and expressive language, joint attention , as well as reciporcal language, some of the most challenging speech areas for our little autistic ones. I did/do my own form of "ABA" therapy. I have been in his face, making him repeat (without rewards), having real conversations but by telling him what to say, making eye contact if it meant making my eyelashes touch his, all of this "in your face" method since he was 3.

Sometimes I don't know what he remembers, or how much info is too much or too little for him to retain. But this time he conversed with me about something I didn't know he knew. My little sister died 4 years ago at a mere 31 years. Sam was only 17 months at the time. I keep a picture of her with each boy in their rooms. For Zach, I want it to remind him of the times he had with her. For Sam, it has been there so that some day I can share with him who she was. He doesn't remember her of course, but he too has the picture in his room. I can't remember when I have said anything more to him on any occasion other than she is my sister. I know he remembers a lot, and maybe he has heard conversations with Zach and I, but last night was the best.

Last night at dinner, we were lighting our (electric) candles as we do each time we eat for someone we need to pray for. For the last three months, Sam has lit a candle for a boy in his class. He says the boys name every meal.

Last night he said to me "tee tandles" (three candles).

Who are your three candles for Sam? I asked.

"bantie" (the blanket his Aunt Darla made got wet today and he was very upset about it).

"Neal" (the boy in his class)

"mommie's titter" (mommies sister).

Sam, why are you praying for my sister?

"see died, in heaben" (she died, is in heaven).

He broke my heart with happiness. Maybe he understands so much more than I ever give him credit! I love him!

Below are pictures from the last time he spent with my sister before she passed away.

A Twist of Faith
Philippians 1:21 "For me to live is Christ and to die is gain."

Thursday, March 08, 2007

If You're Happy and You Know it...(Journal #58)

...thump the person behind you. Forgive me, but that is what I felt like doing today but knew better not to. Why? I will fill you in on that later.

Because the best part of today was the dream date I had with someone I love dearly. Sam. We had two tickets to the tour of "Go Diego Go Live". We have had them for awhile and have been counting down. The performance was in the Hennepin Theatre District in downtown Minneapolis, at the beautiful State Theatre, shown below. We were only a few rows from the stage. It was awesome. Sam was super happy. He has two extreme's of happiness that one must know about him. One is the "super silly, spinning around, smiling, laughing, can't stop moving" happiness. The other is the "this is serious, don't talk to me, don't touch me, don't sing to me, just let me be to enjoy this" happiness. Both of them are as equally happy times for him, of that only a mother can know.

So, the usher gets us to our seats, I just sit down, and there is a tap from a father behind me, "Mam, could you please change seats with your son so my daughter can see?" I quickly nod my head and exchange seats with Sam. I place my hands under his arms to lift him so that it will be smooth and quick, but Sam doesn't want to move from his seat. I turn back to the gentleman and tell him that it may take awhile to get him to move, that I would try again in a little bit. Under his breath I heard him say, "and who is the parent here?" I chose to wait before trying again, because I do have a little experience with my son, and while yes, I am the parent, I don't think the man behind me would like to hear the shrilling "noooooooooooooo" that would emerge, as well as some jostling of the body parts from a meltdown, that could result in elbows reaching the row behind us where he sits. (Editors note: however, even though we are a week into Risperdal, and things have been great, I didn't want to test the waters.)

I let Sam sit, for a few more minutes. I thought if I asked him if we could take his coat off, that it might losen him up a bit. He firmly told me no "toat on". Now, if you didn't know Sam, and you looked at him compared to every other kid in that theatre, you would have thought there was something different about him, but in my eyes, it was just his different way of thinking. I knew exactly what he was thinking. He had looked forward to this day for a long time. He was so excited. He was enjoying it and taking it all in. The lights that pulsated around him. The familiar music pounding from the speakers on stage. The fuzzy seat that rocked up and down. He was "seriously" enjoying it, even though his face seemed intense. Okay, so back to the changing of the seats saga. I found my moment to slide him over to my seat with ease, at which point he finally agreed to take his coat off very slowly. I refused to look at the row behind us to acknowledge our compliance.

As the show continued, parents and kids were up singing and dancing together. Parents singing the Diego theme songs, smiling with their youngster. Sam didn't want me to smile today. He made that very clear every time I tried to look at him. So I didn't push it. I just watched him when he didn't think I was looking. He remained in his seat, just watching all the motion around him, but you could tell that he was just taking it all in the way he wanted to. While those that know me, know that I don't just like to sit, and that I too would have rather been up singing, acting silly and having fun. This little ol'e elementary teacher knows how to act silly with the best of them. But I needed to be what Sam wanted on his special day. I was just fine, until...

...intermission...and the wonderful gent sitting behind me just couldn't stop being "father of the year".
"Wow, you two sure know how to have a good time and live it up! He doesn't seem real happy to be here. " he said.
I replied, "On the contrary, he is delighted to be here. He is just taking every ounce of it in. That is how he enjoys himself. "
I turned back around and asked Sam if he wanted to go for a walk. Quick exit needed before I started talking snitty.

What has Sam taught me? I have mentioned before that he has taught me to better understand the diverse ways we think and communicate and to respect everyone's differences in regard to that. I have learned that Sam can be happy but look serious. I respect how he wanted to share the joy he had of seeing Diego today. So therefore, I must respect that "father of the year" just has not had the opportunity to experience many people in his life that are different than himself. And for that, it is not his fault that he doesn't understand my son nor me in our short encounter. I am not learning anything from Sam and his Autism, if I can't apply it in life. Dear "father of the year", I do commend you for being a dad, who took time to take his daughter to a great show, I commend you for wanting to live and enjoy life to its fullest, may you never lose that. And I, I will respect you for who you are and what you said, not what I would have preferred you to be or to have said.

A Twist of Faith
If you're happy and you know it...shake hands and make peace!!
Maintain good conduct among the Gentiles, so that in case they speak against you as wrongdoers, they may see your good deeds and glorify God on the day of visitation. 1 Peter 2.12