Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.


Thursday, October 26, 2006

How I Feel About Autism/PDD – One Week Later

I’ve started to write this, and stopped, a few times now. I have so many things I want to share, and feelings I need to get out, that finding the beginning seems impossible. The chronological beginning is too far away. Besides, this is not a justification of Sandis’s diagnosis, it is a summary of my feelings, and how tricky these can be, and how often they make so very little sense!

Soon after kindergarten started, I started asking Sandis if he had made any friends yet, and who his favorite little boys were in class. Sandis responded: “I don’t have any friends mom. I don’t want any friends. I like playing alone.”

Autism is my son not wanting any friends and being okay with that.

The first behavior slip I received from Sandis’s kindergarten class was because Sandis had hit another child. When I asked Sandis why he hit the child, he said he didn’t know. It turns out that Sandis plays with this little boy quite often, and they are friends.

Autism is Sandis hitting a little boy who is his friend, just to get his attention. Autism is Sandis not understanding why he did this. Autism is Sandis not understanding social graces and being oblivious to social cues.

I always thought autism was reserved for those children with learning delays. When I thought of children with autism I thought of children who could not play with toys, who could not smile, who could not talk, who had no means of understanding their feelings, other’s feelings, much less how to come to terms with their own. When I thought of autism, I thought of withdrawn children, children who don’t seem to belong to this world. Sandis is not like this. Sandis is vibrant. He seeks out friends, although he does not understand how to maintain a friendship beyond asking for a friend. Sandis’s signs of autism are so different than what I thought autism was/is. Over the past week I have felt so misinformed, especially as I have read about other children who have autism and what they are like!

High functioning autism is a diagnosis fraught with self-doubt. Is he just a normal little boy? Is this normal behavior? Is it just that he is learning how to interpret social cues a little late? Will he be just fine without intervention? Are the friends and family telling me that Sandis is just a normal little boy right? Are the doctors wrong? Is my intuition wrong?

I can’t defend this diagnosis. I can, but I won’t. I will offer it to my friends and family and it will be, because I KNOW something is not right, I SEE things that are not right. Being developmentally delayed IS a learning delay. If you cannot socially interact appropriately, if you cannot appropriately respond to new situations, if your senses are an assault rather than a benefit, you cannot learn normally.

How do I feel about autism? I don’t know. I’m all over the place, but I am accepting, and I want to learn more. I want to understand how to make my family more responsive to Sandis’s needs. I want to do this while I reinforce to my peanut miss Gracie how invigorating and awesome I find her presence to be, despite expending some extra energy right now on her brother. I want to be SHE-RA and be the master manipulator of time and money and make this work so that no child is left behind, and not in politics, but in my family.

Can I do this? Absolutely. Just like with my diabetes, the variation is great (The average of 50 and 300 is 175, right?), but over time, if you reduce that variation, you can zero in on the really problematic areas. Right now with autism and my family, we are new on the pump with ONE basal rate. But………..I’m gonna wake up every hour on the hour and check to see whether I’m dropping or rising….And that, my friends, is all I can do!


Scott K. Johnson said...

Hi Sarah,

Very touching post here. I've expressed my thoughts on just how awesome of a mom you are. So, yes, I do think you can do it.

Minnesota Nice said...

Sarah, I think we're all learning something about this (when it's so easy to make inaccurate generalizations).
And, I loved the punkin' pics.
Have a good weekend.