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!

A year ago... (Journal #18)

A year ago...we first heard someone tell us what we already suspected. "Your son has Autism." Are you sure? He just likes things a certain way. He lines up his toys instead of playing with them because he is too mature for toys and he is bored (that is what daycare thought too). He just has to have his socks put on first because........or he just flicks his middle finger and thumb together because his great Grandma Cottington used to do that. "Are you sure he isn't Asperger's though?". Hmmmmm....straight up Autism. Okay.

I wish Brent and I could have looked at things so simply. While I had suspected it since Sam was 4 months old off and on, it still slapped us on the face when we heard it from the first psychologist.

When working with the school assessment team for the educational diagnosis, the teacher in me tried to act all cool, like I knew everything. Yah, right. I was freaked. I remember crying to myself in the middle of the night. I remember Brent and I replaying everything Sam did since birth. I would question it saying, no it can't be because he can do..... and then Brent would say, yes he is, he does this and this and this. Brent and I would challenge each other, question each other, try to doubt the diagnosis, but we always came back to "we know better, quit denying it." We both knew in our hearts that he had too many of the symptoms, the lack of speech, routines and rituals that ruled our life, difficulty understanding us, tons of sensory issues, motor issues, loss of skills he had, incredible infatuations with weird objects and things, he drooled, had problems feeding himself, he seemed fearless, pain free, all to name a few. At 18 months he could count to 20. At 4 years old today, he needs help counting to ten and sometimes 12. He forgets colors and things he has known before.

We got the educational diagnosis first. When the school psychologist told us their final results, it was a beautiful spring day. I was teaching in my classroom at school when I got the call (previous contacts had eluded to autism and they had been using the word with us frequently, but it was just getting that final confirmation call....ugh). It was Brent first. He was with Sam. They had just left the last day of his testing. Brent said they confirmed the "autism" word, and that I should call the psychologist myself, to see if that is the same thing I would hear. So, during a break in between classes I called her back. It was true. Brent was hearing things right.

The rest of the day I spent at school, while Brent could not go back to work. He couldn't. He needed to be as close to his little boy as he could. He yearned to start seeing things the way Sam did in his own little world. His eyes tells us everything about him.

After hanging up the phone, I couldn't stay in the classroom in front of my students. I teach alternative education to middle school students. The most challenging students in our building and district. Many are involved in gang (wanna be) activity. While I connected with them, showed compassion and care and love for them, there was still a side of me that could never let them see me cry. Having my co-teacher and EA still in the room, I excused myself then ran to the bathroom to have a good ole cry. As I was coming out, I will never forget that God had me literally run into one of my best friends, confidant and co-worker in the building. R was who I needed to run into. She noticed my face and of course I spilled my guts within seconds. I will never forget our walk around the school building that day. At the end of our walk (when I needed to be getting myself back in that classroom acting normal), R said to me, "Laura, God couldn't have given this to two more perfect people. He knew you could handle it and make great things with it."

"I can handle it?" Yeah right. Like I try to be this great Christian or something. Who am I that would be so blessed to have this happen too? But.....it is there that I stopped any conversation with God about this in a negative light. I really did. I never once blamed God for this neither did Brent. Although I do blame myself still wondering about my pregnancy and care and exposure to the environment that I may have done. My first child was premature and now the second autistic. Maybe I just did not do prenatal care as good as I thought. I know I slipped in a couple extra Diet Cokes with Sam. Oh, who ever knows. What I do know, is that R provided for me that day, something that a mother might do. It felt warm, caring, and she is always sincere, and I will be forever grateful that she was in my pathway as a charged out of the bathroom that day.

While all this was going on with me at school. Brent had resided to take the rest of the day off and go to the park with Sam. I received pictures via our camera phones that Brent sent of Sam playing in the rocks. Brent just wanted to take him all in and love him till the ends of the earth. I have truly been blessed with an incredible man. As the school day seemed to go on forever, I couldn't wait to get home, pick up Zach from daycare and join up with Brent and Sam.

After school was out, I started to panic. Wait, we need a medical opinion, we need a second opinion. How can this be? As I drove to get Zach, I put in a call to Sam's doctor to tell him what we found out and to find out what we do from here. I had to leave a message, but I knew he would call later.

All we wanted to do tonight was to spend time together (Brent and I) to process, to figure it all out. But, as is life with little boys, our night was crazy. Brent was taking both boys with him to Zach's soccer practice while I was going to attend (ironically) Zach's parent meeting for the districts talented and gifted program of which he tested into. On this day, literally, one child was staffed into our districts special education program, while the other was staffed into TAG.

I was waiting in the parking lot when Dr. Kuperman called me back on my cell. I was so upset and still denying, but he was so kind and caring. He said he wasn't real surprised and told us exactly what we should do next. He had referrals ready the next day for speech and OT therapy. He really helped to calm us. He even gave us some suggestions for some thorough medical diagnosis too, and where to seek those.

Finally bedtime. Brent and I could be together alone, to talk, to be sad, to be mad, to wonder, but to smile too. Whenever we talk or think about our two beautiful boys, they just make us smile. Even when it is sad news.

It is a year later. Sam is speaking so much better. We are still in speech and OT therapy, he also receives therapy at school in his early childhood/special education program.

While we have no clue what his future will be like, we do know this...
...that God is bigger than all of this and can take care of us
...that Autism is not a death sentance, it is just another way of life
...that if you keep humor in your life, there is less pain
...that if you keep family close, there is more love
...that if you live for each day, each moment will last forever!

A year ago....we thought our world would end.
Today...we are better, closer, more in love with God, each other, and the world. All because a year ago...we learned to look at the world more differently and unique, through Sam's eyes.

Ufta, Saliva... (Journal #17)

Ufta, Saliva...and I am not even Norwegian. But truly, yesterday was an "ufta" day. Sam had one of the most challenging days he has had in a long time. Oh, and saliva was a big part of the day. So, if you have a weak stomach, don't read on.

The day started like any other school day, except he had a hard night sleeping, which might account for the crazy day. His meds have been working so well, I am really hoping it was just a glitch.

Transitions were a little more difficult getting clothes on and ready for school. Eating is always an issue, but I don't recall that he ate any more or less than he usually does. He definitly did not want to get on the bus. And to top it off, he had a substitute bus driver, which could have added to the day.

After he gets off the bus each day, he has his little routine. It is actually very cute to watch. It usually takes us awhile to get into the house, as he spots every new leaf, seed or rock that lands on the driveway. He always insists on picking up each one. We finally get to the front door, he rips off his coat and shoes and runs up the steps to see what I have on the table for lunch. Same routine every day. But........today, I knew we were in trouble when he got in the door, and instead of him taking off his coat, he looks at me and screams "OFF!!!". Saliva is drooling out like crazy. He is slobbering all the way down his coat, which now is as shiny as a tire rim. When his drooling is worse, it usually means something is going on. Sometimes he is sick, sometimes he is tired. We just never know. I calmly say to Sam, "Use your words. What off?" Even though I know it is his coat. "MY TOAT OFF!". I again respond with a calm voice, saying "please?". Knowing that to ask him to try to take it off first as usual, was out of the question today. "PEASE!" he yells.

So, we get done with the coat ordeal. Now he starts throwing his body and legs all over the foyer. It is obvious that he is trying to take his shoes off by standing up and not using his hands. He is screaming and throwing himself all over. I again say in a quiet voice, "Sam, mom help with shoes?" He shakes his little head yes, but he has tears in his eyes and he looks exhausted by now. I know he is a big boy and 4, but I can't help but sweep him up in my arms and carry him upstairs to the table to eat. He lays his little head on my shoulder and snuggles in for the short ride.

I always have his lunch ready, as his bus gets back from school well after 12 noon and he should be hungry (but never is). Eating has become a whole other issue, perhaps worth a blog later. We get to the table and of course he starts screaming. He is not happy with the turkey and green beans he sees. Our typical song and dance at the table has begun. I try to trick him, convince him, encourage him to at least sit down (a rarity). I tell him he has to have four bites of turkey and count them out to a single place where he can see them. He takes the meat and throws it at me and the floor (Chicago, our dog, is in heaven, and hmmmm.......no wonder she was 3 pounds heavier at her appointment this week). Sam continues to stand up on the chair screaming "ALL DONE". I tell him "sit down". "4 bites" yada yada yada.......the dance would continue forever. He finally puts a bite of turkey in his mouth (which he has liked before), but opens his mouth and lets it all fall out, chewed up and all.

Needless to say, the rest of the day was similar. Little use of his words, nor were they appropriate when he did. He would ask for water or other drinks throughout the day, but when you gave it to him, he would take a drink, open his mouth and let it fall down him to the floor, then laugh.

He spent a great part of the day running his fingers over everything and knocking everything on the floor. He has always been very tactile, needing to touch all that he sees. When he stands next to me, he always pushes into me touching my arm and feeling my hands. Wherever he goes he needs to touch and run his fingers over the object or person. Today was just one of those days that put me over the edge.

It seemed he was doing lots of sensory seeking things today. So, I even did some brushing therapy, did the old joint compressions, wrapped him tight in a blanket, and made him sit in his "bean tub" for some time (which usually calms him).

Then it came time to pick up his brother from school. I showed Sam his schedule so he could visually prepare. Gave him lots of warning. Used our cool timer (the Time Tracker by Learning Resources) so he could mentally prepare, and bam! Major melt down when it was time to pick up Zach. I can usually spare a couple minutes, but today was rainy, and I knew that faithful Zach would be in the same, unprotected by the elements spot, he usually is. While Sam is screaming, I resort to picking him up and putting him in the van while he is kicking, clawing and hitting me.

While being a stay at home mom now, after 15 years of teaching , I have finally begun to adjust. The one area I am not adjusting is the parent pick up/drop off scene. I don't really fit in. We only live 3 blocks from school. All the neighborhood parents, especially this time of year, walk together to pick up the kids. Every day I drive by, and they just look at me. I am sure they think I am stuck up or lazy. It is too hard to try to explain to them that walking with Sam is too hard. That it is much easier, no matter what his mood, to put him in the van and buckle him into his booster seat. Instead I feel like the fat, lazy loser who doesn't want to walk. Are you kidding? I love our Burley trailer/stroller, I love walking our dog Chicago with us. It just comes down to the fact that when I have to be somewhere by a certain time, that a lot of the time, no matter how I prepare Sam, it is usually a battle.

Needless to say, Zach was a saint and so patient with his brother. More so than his mother. Sam continued to refuse to use many appropriate words and screamed the rest of the day. He insisted on putting everything in his mouth, licking almost everything and spitting everywhere for no reason (it appeared, we know otherwise, in his little mind, he was trying to tell us something). Supper was chaos, bedtime was nuts, and all I have to say is....."Ufta, saliva!" Too much for me today :) Smile, there is tomorrow!!!!!!!!!!!