Thursday, May 04, 2006

It's all about faith... (Journal #19)

One of the hardest things to teach Sam, will be about God. Of course we have already been doing it, but he is still 4, he is still in that concrete stage of learning developmentally. But...Christian faith is more than concrete, it is the most abstract concept one can understand, and you truly can't believe it without faith.

In remembering my undergrad days and child psych classes, of course it is Piaget (the educator in me) and his theories that I recall most, and then I think of Sam. I remember the clinical experiences when I was to work with a child in all of the developmental areas and apply his tests. My first paper revealed appropriate responses from the children I worked with at each level. I wonder if Sam would have fallen under the category of "appropriate".

Tonight I was looking at some old texts and remembering those trials and thinking of where Sam would be in those stages of intellectual development. Sadly, there are a lot of things that would reveal he is still in Piaget's sensorimotor stage. Many times he is still easily thrown with the simple concept of even object permanence. And of course with all of his sensory issues, it makes me wonder if he is stuck in it.

This all takes me back to my original thought about God, faith, and teaching it all to Sam. You see, by the time we are in college, most people should have acquired Piaget's last stage of intellectual development, the "formal operational" stage. This is where abstract thinking really comes in.

Sam is so literal and black and white in his thinking. There is never any gray. He does not understand concepts like "in a minute" (even though he can say it), or "I don't know" or "maybe". He has to have yes or no questions. When he first started developing more language, his echolalia language really demonstrated that.

He used to repeat the same question over and over and over again. It would drive Zach (my oldest son) and I crazy if we were in the van with him (and couldn't escape it). So...brilliant me, would ask the same question again, but before he could repeat it this time,I would immediately follow with "say yes or no". So now, Sam frequently asks a question and immediately says "say yes or no". Then you have to guess which answer he wants. If you say the wrong one, look out, as he will keep saying the same question over and over until you answer it the way he wants.

Hence, some of this babbling (which my close friends know I am good at) does lead me to my true inner thoughts. Will Sam ever have a meaningful understanding of God? Does he need to? I know many people and friends who are fundemental in their faith, who would lead me to believe that if my son never understands Jesus as his Lord and Savior, that he will never go to heaven. But, I say to my fundy friends, why do we have missionairies? Churches send them to share the word of God with those who refuse to believe and those who have never heard. I have always believed that God would never throw away a child in Africa who has never even been told about Him. What kind of God would that be? Not the God I know and love. While Sam has been told, how does he understand it and comprehend it if his mind can not do that the same as you and me? To me, God see's him like that child in Africa.

In Psalm 103:13-14 it says, "Like as a father pities his children, so the Lord pities them that fear Him. For He knows our frame; He remembers that we are only dust." God knows our weaknesses and understands. God knows all about us and who we are, he knew us before we were born. He is the only one who knows the mind of our Sam and autism.

For us (Brent and myself), we trust, believe, and have faith in a God that will provide for Sam. We just want him to be able to experience what God's love feels like. And even if Sam can't, he still has agape.

So how do you teach a child with Autism about God? You still pray with them, you still try to teach them to pray, you tell them the Bible stories and you love them. One good thing about our Sam and his autism, is his memory. He memorizes every routine in our life and he memorizes stories, movies and books. He has also memorized our meal prayers and our bedtime prayer. And while he can't really say a bedtime prayer, he lets me say it with him and he folds his cute little hands. Our prayer every night ends with God blesses. I say God bless, and he tells me who. Grandma, you will be happy to know that you are the first God bless each night for the last couple years running, even though he calls you "damma". I know he will be able to say the Lord's Prayer some day too.

Faith from family and friends...
I write this a good three weeks or so after Easter, but this whole faith thing has been on my mind. Easter was a very stressful time for me this year, when it is supposed to be such a wonderful ending to the Holy Week. We were going home for Easter to Brent's folks in Iowa for the first time in many, many years. Brent and I have been youth leaders at church for the past decade, and the youth always do the sunrise service. Our pastor has been graciously letting us dwindle our way out the last couple of years.

While I was very excited about celebrating with family on the farm, I was very nervous about church. Brent's home church is a beautiful little church with historical architecture that includes wood pews and a graduated wood floor. I love this church. It actually feels more like a church than our own at times, as our church in Minnesota has more of a contemporary feel. I also knew that Brent's old church does not have a nursery. What to do with Sam? He has a real hard time sitting, and church can be hard with him when hymns are playing, as he usually would retreat under a pew/chair or something. Will he scream? Will he need to run? I didn't know how to prepare, other than before we left from our home, I had showed him a picture of a pew (we have chairs) and talked to him about quiet voices, yada yada yada.

I was already sweating bullets before we left the farm house. And, as luck would have it, there was a full house in church on Easter Sunday. And, where was the only large enough space to accomidate Brent's entire family and everyones children? Yes, the front pews, where no one ever wants to sit. By now, my Secret Deoderant was no secret. Okay, what is in my purse? Do I have enough of his sensory things that he would rather line up anyway? Did I remember our sugar free Tootsie Pops? Oh, and where are my kleenex for his drooling, I can't dry clean this outfit again? I was freaking, but trying to look all calm and collected.

While all this is going on, my rock is firm beside me. Brent. He is always my rock. He can tell when I am losing it, which is usually followed with a gentle, inconspicuous tap on my leg, which I usually follow with a loud "WHAT?". I am such a butt sometimes. He is keeping Sam between us while I keep Zach and my neices preoccupied. I am trying not to think about what Sam may do.

Then the organ starts (oh Lord, literally). We have carpet in our church back home. Sam was not ready for how loud it would be with the accoustics. What is he going to do? I am trying not to look at him or let him see me look at him. Then I feel his cold little hands pulling on mine. He is covering his ears but he motions for me to put my hands over his ears too.

I comply.

"HARD" he says loud over the music. I try to press harder.

"HARD" he says again. I feel like I am placing suction cups on his little head.

I am calm. This is the same routine we go through at movies. It is familiar to me and him now, and I think we both are better.

As the service progressed, it was obvious he was needing more space. My fear was him going under the pew. Where would he go from there? We are in the front row. Would he dart straight up to the communion table?

Calm down. He just needed to create his own space (as Brent reminded me). He sat quietly on the floor between Brent and I. He took all the Bibles and hymnals and placed them around him to create his space. "The door" was next. Sam has to always create these spaces for himself, and then he adds "a door" as a final touch.

"The door" this day would be my backpack purse. He nudged at it from the other side of my legs and affixed it perfectly to enclose his safe place. I looked at Brent, he smiled this calm, "see, he is okay, he just needed his space" look at me. I was calm now.

After church, I was reminded of my own little lesson on faith. Sometimes (as a good friend once said) you have to "let go and let God". Yes it is a saying heard forever, but our friend Judy made it real. I should have listened. Thanks Brent for your faith and being my rock.

As I was preparing to leave (and had left Brent to fill the van with our own boys and all of my nieces, sorry Brent), Brent's pastor pulled me aside to tell me about Build a Bear Workshop . She told me that they were having a special bear for Autism Awareness Month. She just thought we would like to know. I thanked her, and told her we had heard, and that Sam and I were planning a special trip there together. What I didn't tell her was that the special bear they were using is called "Nikki III", which has even more meaning for me, as my little sister who died a couple years ago was named Nikki. So Sam's little snuggly bear we would make, was also his little angel watching over him. Just Brent's pastor acknowledging the Autism, and letting us know she cares, provided yet another lesson..... "faith and friends".

Then later in the day, while all of Brent's sisters and their families and his aunt and uncles came, another lesson on "faith and family". Brent's Aunt D (who is in her 60's and facing her own challenges with Parkinsons) pulled me aside also saying "Is that underwear Sam is wearing?" She knew we had been struggling with potty training for awhile.

"Yes, we finally did it! We took a week straight of potty bootcamp at home." I replied with super excitement, as you can guess.

Aunt D went on to tell me that she was so happy and so surprised. She said, quote, "wow, all of the stuff and novels I have been reading about Autism lately say that it is sometimes 6 or 7 years old or later."

Aunt D doesn't know, but that right there said so much to us. That first of all, why would she care to catch up with Autism when she has so much with her own health going on, and second, that she is taking the time to care and understand our child better. ...."Faith and family."

One of my favorite quotes is "Faith is not believing that God can, it is KNOWING that God will".........again, it is all about faith!

3 comments:

Carrie said...

wonderful blog... I'm a speech therapist in CA, working with kids with autism, and love reading your story. I'd love to tell you about our church's spiritual resource ministry (kids' sunday class for those with special needs) and the private inclusive school that a family in our church started (where I work now). Let me know if you'd like more info... maybe it could help you to pilot a program in your local area or if you ever come to the Bay Area, you have a church where Sam will be welcomed. My blog is www.our-legacy.blogspot.com.

Big Orange said...

wow, that's a good'un!! I love the imagery and the detail.

You know, I would have to say that teaching ASD children about God is much the same as any other child: you learn the words, you learn the movements, and eventually as your mind grows, what you've been doing begins to make sense in a cosmic and spiritual sense. Someone once compared it to learning to play the piano: you start with tedious and often dull scales, but until you know the theory and your way around the keyboard, you'll never be able to make sublime MUSIC.

Peggy Lou Morgan said...

I love this post. Have struggled with this with my own son.

BTW could you email me at peggy@lighthouseparents.com. Tried to find an email address on your blog yesterday because I wanted to talk to you about a comment on my blog but couldn't find your address.