Wednesday, May 31, 2006

Paul in love...(Journal #24)

Tonight, Nightline will be featuring a special on Autistic adults in love, specifically a gentleman named Paul. This is the video clip: Autistic love in bloom

Just an FYI. Not much time to blog today.

Wednesday, May 24, 2006

To Katherine McCarron (Journal #23)

Today is a day of mourning in the autism community, as yet another parent is accused of murdering their Autistic child. The last two weeks have been witness to two murders of autistic children. Christopher Degroot, 19 years old, and 3 year old Katherine McCarron. Both deaths have struck me, but especially little Katherine, just a year younger than our Sam. The Autism Hub, is dedicating today as a memorial to Katherine McCarron to honor postings for her, and tomorrow it will be shut down as a day of silence for her as well. I inserted a picture of the flower Freesia. Freesia resembles innocence. I can not help but think of the innocence of Katherine. It is hard to even think of what to write, so I will share a brief thought and some blogs I respect who have dedicated their posts and wisdom to Katherine this day:

What we must do!
None of us may have known Katherine physically,
but we all knew her little soul to a tee.

We never knew her well educated mother, a doctor,
but I hope she pays the price for what she did to her daughter.

No matter what our children do,
they never deserve to lose their life too.

As an autism community may we never lose sight,
to come together and do what is right.

Not right for ourselves or what we want our children to be,
but right for our children so all the world can see.

They are people too with minds so curious and new,
to love them and care for them is what we must do!

Thanks to these fellow bloggers posts, whom I respect, on your words today:
Left Brain/Right Brain
Autism's Edges

Thursday, May 18, 2006

The good, the bad, and the ugly...but it's all good (Journal 22)

The was such a perfect spring day today. It was a "no afternoon therapy day", which meant I got to enjoy Sam in his sandbox in the back yard, sitting on a warm deck amongst nature.

The scene was gorgeous. I was on one of our upper level decks which sits among tree branch level. One particular branch actually touches the deck from a storm last fall. It is surreal in that you feel like you are literlly floating at tree level.

The feeders were attracting everything today from Blue Jays, Cardinals, Gold Finch and Sparrows. They were actually congregating around the feeders instead of arguing.

But Sam...he was the most beautiful site. Watching him sit and sit and sit in his sand. To watch his eyes as he ran scoop after scoop of sand through his fingers, or onto his dump truck. He would occassionally stand up and walk through the garden on the stepping stones, pounding each one firmly as he plodded through. Only to go back to his sandbox on the top terraced part of the garden.

And Brent and Zach...they were as beautiful (even though not with us). Brent had taken a day off of his incredibly busy schedule to volunteer as a chaperone on Zach's 2nd grade field trip to the Mill City Museum. Zach was in heaven to have dad go. I could not wait for them to open their sack lunches on the trip, as I had packed them each an M&M's M-azing bar, and had wrote "you are" on the top of the wrapper, followed by "love mom". Picturing them together on a bumpy school bus ride, sent me goose bumps of long needed happiness. This day was so good!

The bad...has been the last couple weeks. I am in a rut spiritually, weight wise (eating every bad food I can), emotionally, oh, and let's just add physically for the fun it! Trying to deal with my little stinko attitude of late, I decided to relax on the deck, to meditate, and to get my act back together again. I decided to jump into the kitchen and grab my new attempt at being healthy, a V8 Fusion. Since I had made it this far into the house, I decided to check e-mail. (I have been more and more comfortable leaving Sam for short spurts since our back yard is fenced in, gate locked, and video monitor of him at my computer).

When I got to the computer, an e-mail had arrived from a fellow autism blogger asking me about the discussion about the new Autism Speaks video entitled Autism Everyday. While this video has sparked many rampant posts among autism bloggers, I will not go into detail on my opinion of it. I am very on the fence, and feel there have been many eloquent writings about it already from both sides of the fence.

What I walked away from my computer feeling was even more "bad" and sadness. I am so sad to be a part of a community that seems so divided. Before the video there have already been intense debates over "treatments, to cure, to not cure, remediation, chelation, biomed, minerals, vitamins, GFCF diets, ABA therapy, whether a child has autism, or the child is autism, the list goes on.

I am sad because the autism community can be so divided at times, instead of coming together to focus on ways to improve awareness of autism so that life will be better for those in our lives with autism. It is the awareness piece that the world can benefit from, to better understand our loved ones.

We don't have to agree on causes, treatments, cures, etc...I enjoyed the Time article from last week that compared autism and recent findings to cancer. For me personally, I have always believed that autism has many possible causes, from environmental factors to genetics to mercury to name a few. I have also believed, as in with cancer, that treatment, if one chooses varies among individuals as well. We all just have to do what works. Just because some have done on form of treatment and worked, it does not mean it will for the next. I wish people would understand that. Do you think in the cancer community, that a breast cancer survivor would get up and say, "Well, yes mine was in stage 3 like yours, but we fought it aggressively by doing, this, this, and this. If you would have chosen the same treatment, you would have been cured too." When in fact people acquire same types of cancers, but they often respond to the same treatments differently, and need to choose a different course, and may still die from it. What I am babbling and trying to say, is that those in the autism community should be less concerned with judging one another and their treatment/non treatment methods, and more concerned with creating an awareness in the neurotypical world about autism and just how individual it is.

The ugly...happened. As I sat on the deck with an upset stomach thinking about all of the debate and judgements being made, I felt it. I felt this incredible plop on the back of my head. It couldn't be a rain drop, there wasn't a cloud in the sky. Oh Lord, no it wasn' couldn't be. I raised my left hand up over my long blond hair to the back of my head. I felt. I brought my hand back and looked. NO!!! This could not be. Not ever in my 37 years has this happened to me. I brought my hand to the front and stared. There on my hand was a slimy, greenish, yellowish mixture of BIRD POOP! Yes! A bird pooped on my head. This was a perfect ending to a bad last couple weeks. Bird crap on my head!!!!!!

But it's all good...really. Because my day turned around. Later that evening I received an e-mail that was "all good". It was from a mom of quads, with two sons on the spectrum from an area suburb. She saw a comment I left on a fellow bloggers page and noticed that I was from Minneapolis also. We have already had e-mail conversations, and I look forward to chatting with her more and meeting her in person. I look forward to creating a community with her that may allow its members to agree to disagree, that will be there for one another and try to create a better awareness of this world called autism. So what if it is only us for now, for Jesus said, "whenever 2 or more are gathered."

It was the good, the bad and the ugly...but it's all good!

Thursday, May 11, 2006

It's been a "Dandy" ole time! (Journal #21)

"Dandy"lion time that is! Sam's eyes are always looking. He is constantly going, constantly seeking the details in his world. We enjoy watching and waiting to see what is next.

When I speak in terms of next, I mean, what will his next fixation be? What will be the thing that sticks in his mind obsessively the next couple of months? I remember all too well all of the diagnostic tools and assessment questions when Sam was being evaluated. I remember the questions about odd play or lining up toys, or overly obsessing over an object. I knew what those questions were looking for in terms of answers, but I didn't want to give it to them in a way. For Brent and I knew that what we would say, would further lead to the diagnosis which I, personally, had always feared. I curtailed my answers somewhat, and I actually remember not telling the full truth on his educational assessment because I did not want him to have Autism. I wonder how many criteria he would have met if I had been totally honest.

But here, this is why I did not want to tell the whole truth...I felt like some of those questions made him seem like he was completely thoughtless. That lining up toys in bizarre fashion had no meaning. That doing the same thing over and over again was absurd. But it was the opposite for me in my understanding of Sam. I always felt, and continue to feel, that he always has a purpose or an outcome that he wants when he fixates on something.

If it is lining up objects, there always appeared to be a reason. You could just look at his little face thinking so hard and know he had a purpose. His little eyes squinting. Crawling on his hands and knees to get floor level for a better look at what he had done. Laying on his tummy, holding his head up with his hands, staring endlessly at what he had just created. He was proud! Not thoughtless. He was thinking about what more he could add on to it. Not thoughtless. Above picture shows how he took all of his books and my potted plants and lined them all around the perimeter of the patio one day last May. The picture below is him ,over a year ago, creating inside.

For Brent and I, the most amazing thing is his memory of what he has created. We call them "shrines". Sometimes we have to leave them for days. He screams with great pain if anyone even touches his creations. Poor Zach can't come within feet without a shriek from Sam. Zach is seriously, the most patient and loving brother in the world.

Perhaps what is most intriguing about these creations, is that they contain many objects, toys, and "latest fixations". Many times there are too many objects to count. If he is out of the room, and you move an object an inch, and one that isn't even real visual, he will notice immediately. He memorizes every position and angle that he has arranged everything. He has a purpose. Sometimes Brent and I think he is creating some type of map or layout. We think he will be a famous architect some day.

In his "shrines" or lines, or whatever they are...they always look like they have a purpose in his mind. The challenge is the "fixation" of the day, month, week, or year. What is the object or idea that he will incorporate into everything he does? Well...for the last 2 weeks and still holding is the dandelion. Walking anywhere near those lovely weeds is virtually impossible, as Sam believes he needs to snatch every single one up and bring it home.

This has been his latest ritual:

1- pick dandelions all day when outside or at brother's soccer practices

2-place them in a ziploc baggie as soon as I can

3-carry baggy with me

4-put them on the floor in toyroom and create a "shrine" of lines for them

5-when they look dead... cry, scream, yell and throw them out of the baggie (along with all the grass I have collected) on the floor, scattered as much as possible

6-repeat steps 1-5

We just love his little mind so much. While sometimes it is frustrating when we don't understand, we always know he has a purpose for everything he does. This weeks issue of Time helps us to reaffirm what's in his beautiful brain...

...of why he has his little stims

...of why his routines and rituals are important for him to feel safe

...of why he says or doesn't say things

...of why the way an autistics brain works is so amazing

...of why we are going down the path of acceptance that we have chosen is all to honor this "dandy" little boy!

Monday, May 08, 2006

This week in Time... (Journal #20)

Hope everyone takes "time" to buy this weeks issue of Time Magazine. We're looking forward to getting it delivered in our mailbox anyday. Thanks to everyone who shares with us their desire to learn and understand Sam and us, this may be an additional resource that will help. A fellow autism blogger, Kristina Chew , did a review of the article at Autism Vox . Happy reading.

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!