Friday, February 24, 2006

A glimpse of the future... (Journal #13)

When you get the diagnosis of Autism in your family, it is a lot like when you get a new car. You know what I am talking about. You do all this research on your new purchase. You want an automobile that meets your needs, has your favorite color, all of your required, unique specs! Then the car comes home, and you notice there are other people driving a car like yours.

It is like that with Autism. Before, when I heard the word, I didn't know a lot about it, but I did know that I prayed I would never have a child with Autism ( I really did), and that it seemed like a death sentence to those who had it. Then Autism enters our life...and every time you hear or see the word Autism, whether it be in print, news, or in passing, you are drawn to it.

The weekend after Brent and I received the educational diagnosis, we went straight to Barnes and Noble and bought every book we could on Autism and read them. We stormed the internet, we couldn't get enough information.

A glimpse of the future...while doing all of this, the real lingering pang was that I didn't even care about the here and now with Sam, I wanted to know his future. All parents hope, dream and wonder what the future holds for their child. If they will marry, if they will be grandparents, if their child will be happy. Now, our focus changed......would he be able to live on his own if he wants to as an adult, will he have meaningful relationships with people in his life that he can share love and laughter with besides family, will he have a job/career that is fulfilling and makes him feel needed? We just want to know what his life will look like.

A glimpse of the future...we see it occasionally. We see children older than him at therapy each week, who look like they are functioning, learning, etc... I am so intrigued when I meet another family with Autism in their life, to see what their child looks like, and how does Sam compare.

A glimpse of the future...we find it occasionally. I constantly read blogs at to understand the way they think. It is inspiring, interesting, and hopeful to understand Sam more and what he might be like.

A glimpse of the future...we can watch it occasionally. Sometime this year, the movie "Snow Cake" starring Sigourney Weaver will be released. It is about a mother who is Autistic. A chance to see a portrayal of an adult with Autism in the movies other than Rainman.

A glimpse of the future...we can witness it occasionally. Like yesterday, which is what inspired me to write today.
Yesterday, when 17 year old, Jason McElwain, scored 20 points in the last 4 minutes of a high school basketball game. With 18 of those points coming from 3 point shots, and the other one had his foot on the line. He got his chance to shine, and he too has Autism. While I know nothing about his individual journey with Autism, I know everything about how that mom must feel!

A glimpse of the future...we can never take in too much of the word Autism. We can never see too much of it, like when you notice that new car of yours being driven by others too. Sam is our own unique 2002 model loaded with extras. His Autism is not the enemy in our home, it is our friend. It is our son. It is our hope, that he gets every opportunity to be who he wants to be in the future, and not what we want him to be!

Sunday, February 19, 2006

Writer's Block (Journal #12)

Wow! I am surprised if anyone checks back on this site. I haven't been inspired to write (while I am always, still inspired by Sam) in awhile. Everytime I start something, I am distracted, or just don't feel like putting it to words. Lazy, hmmmmm. Truly, I write just to get it out anyway, so maybe the fact that I haven't written for awhile means I am coping. Ya right :)

Actually, I have been busy figuring things out. Taking Sam to therapy for speech and OT two entire afternoons a week starts to wear on you. Okay, how does that relate to my topic sentence. Well.........I am trying to figure things out as I am overwhelmed by the parent autism connections I have. While Brent and I have great support through agencies like Minnesota Autism Society and the Osseo School District, it is at North Memorial Hospital's Rehabilitation waiting/observation room that I find support that can overwhelm me at times. I spend two days a week freaked out and trying to figure things out.

First of all, the staff at North are awesome to say the least. They love and work so well with Sam. What happens is, that you wait with the same group of parents every week all afternoon. Many are there for various reasons, but at the time we go, the majority are also parents of autistic children.

I am trying to figure things out, because sometimes I feel like I am not doing enough for Sam, but yet in my heart I feel we are. There are parents there I have grown very close to, but differ so much in views with Autism. There are those on the whole "mercury" rampage. Those who only do biomed. Those who swear by hours of ABA therapy (one of the most proven successful therapies for autism), and those who have successfully done the gluten/casing free diets (of which we saw NO change in Sam when we did), and last but not least is "doping" (my term, it's Olympic time you know) their children with every vitamin therapy there is, close to chelation as well.

I really don't believe it was the immunizations for Sam. I knew something was well different with him well before the first MMR immunization. Sometimes I still even blame myself, wondering how much tuna I ate, what I exposed him to in utero. I don't know. I will never know what caused his autism, but I do know I am making peace with the fact that he has it. It doesn't mean everything is "peachy keen", but it means we accept it, and Brent and I say okay, let's go forward, not backward.

Okay, so I could go into how it seems the Autism community is becoming divided on the biomed/accept not cure Autism debate. We, however are blessed and very pleased with our accepting of Autism and our own medical community. We have one of the best pediatricians in all the Twin Cities (truly, he has been voted one of the "top docs" the last 3 years). He is a pediatrician who has specialized with children with developmental disorders like Autism and other things like ADHD.

Dr. Kuperman has been there for us with frantic calls after hours, when we were first finding out about the possible Autism through our school district first, when they assessed him. He returns every call the same day. He takes time for Brent and I to come in alone to process and talk. He has referred us wherever needed with the autism, from speech/OT to a neurologist. We have covered all bases. He is so patient with Sam, even when he refuses to cooperate, when he forgets to use his words and screams instead, and when he is literally bouncing off his walls. We trust our medical community. We are getting things figured out. We are providing Sam with between 25-30 hours of therapy week including the speech and occupational therapy and the therapy he receives at school through early childhood special education. We give him lots of our home grown ABA therapy (which by the way, is not rocket science), lots of nurturing and most important, lots of love. We are figuring things out.

And........I guess my "writer's block" is gone. Look out!