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.


Friday, November 03, 2006

The Act of Being Normal

What is normal? How do we define that? Being normal seems to be exactly what you need to achieve in order to make it in our public schools or to be accepted by a loving group of friendly coworkers. Why do so many of us feel out of this normal loop? Why do I personally work so hard to achieve a status of normalcy that really seems to have no true definition?

I’ve been thinking a lot about what is normal lately, and how this affects my family, and most recently how it affects my son. When I think about my son, I think about his passion. I think about his joyful smile. I think about how his behavior generally tests me and shows the truth concerning my patience levels (very low presently) every single morning. I see all of the wonderful things in my son that expand my heart, fill me with pride. Sandis has an energy that overflows. I wish I had that overflowing energy for myself, the energy and the passion to lift myself up with every afternoon. Why is it that when he is at school, they do not see this as the gift it truly is, but rather as a negative in that he cannot focus on what they are doing? What should I focus on? Their negative or my positive? Why does their negative influence my positive? Why can’t he be both? Why isn’t the fact that he is a happy and joyful child enough?

Special Education. (IM NOT NORMAL). Occupational Therapy. (IM NOT NORMAL). Speech Therapy. (IM NOT NORMAL). One-to-One Aide. (IM NOT NORMAL). Psychologist in Class. (IM NOT NORMAL). Rocking Chair. (IM NOT NORMAL).

I may as well just paste a big fat red sign on his head that says “HEY! PICK ON ME!” I remember being in school. I remember the cruelty of young children. I wish I could save him from that. I also want to ensure that he can be the most adult that it is possible for him to be. Do I let him go along, as he is now, with tools that are inadequately suited for meeting the world’s expectations, without much intervention? Or do I step in and offer all that I can, trying to change the little boy that has so touched my heart? (Sandis has both enraged and melted me! He has truly done a number on my heart!)

Why can’t he be normal? Why does everything we do to help him have to make it so clear to EVERYONE ELSE just how normal he ISN’T? Why is this such a struggle for me?

I am still learning to accept my son. I am still learning to work WITH him rather than against him as we try and meet our goals for him. What are his goals for himself? I am still learning to accept my son’s needs. I am still trying to ESTABLISH my son’s needs. I hate that he isn’t breezing through school. I hate that every day at school makes it so much more clear how much extra help he is going to need to get through these next few years.

I hate my OWN limitations. I hate how I myself do not meet their “normal” standards. I hate being the odd family out. I hate feeling like I do not fit in. This is not about diabetes, this is about me, who I am, who my son is, who my family is.

I am trying to pave a way that, although separate from most other families and other kids, has the same goals as other families. We are just getting their differently. Our path has some pretty awesome scenery. We learn a whole heck of a lot on the way. And in the end, even though our goals may be the same (Grow up, be healthy, be happy, find personal success) we will get there so differently, even our results will be different. Our goals will change color and the hues will no longer match.

What is normal? Is there a normal?

I know this for certain, I don’t think we are normal, but maybe we are? If all parents want the best for their child, and all children have different needs…..And I am just doing what needs to be done to meet my child’s unique needs as best as possible…Am I not the most normal parent ever? If all my son really wants is to play, eat, and be loved is he really any different from the child next to him who is not autistic?

Perhaps normal is not something that is defined by someone else? Perhaps normal is not something that is defined by society, but something that is defined more by our instinctual physical and emotional needs more than anything else?

I want to love. I want to be loved. My son wants to love. My Sandis wants to be loved. We share this. I bet you share this attribute with me too.

Let’s celebrate this “normal” trait among us, I’m fairly certain all of us have it!


Scott K. Johnson said...

This is a very touching post Sarah.

I don't have any special words that will make things any easier for you - but I want you to know that we are here to offer whatever support we can.

You have a lot going on, and having shoulders to lean on is never a bad thing.

Bernard said...


I hope and pray the your situation will get better.

As I read your heartfelt post, I couldn't help thinking that there are none of us (NONE) who are normal.

Know why? Because we're all individual. That's how God made us.