Family is Forever

Family is Forever

Sunday, April 20, 2008

My New Normal

Trish, I'm borrowing your title for just this one entry, ok??? My co-teacher and I wrote a grant for our kiddos to go on a field trip. We got it approved and took them to a marine place last week. Reality hit me hard this time. Let me start off by saying that I am NOT embarrassed of my students, so please don't think that. (for confidentiality, I'm not using names, just first initials) I guess we get into our routine and its all normal for us. Its no big deal that A has to be tube fed at lunch or that T wears a bright orange vest on the playground so that he can be seen at all times. We know that when TC repeats what you say that means he wants whatever choice you gave him. Its not a big deal for K to hum 'Bob the Builder' but use picture cards to express his needs. And as for W... we know that when he starts laughing uncontrollably and twisting his hands, that well, he's laughing at his guardian angels we can't see. To give you a little background we have 2 kids on the spectrum, 2 with chromosomal differences, 1 who is delayed as a result of mom coming into contact with CMV during her pregnancy and one who, well, has some serious behavioral issues which we think may be linked to drug exposure while in utero. One of our SLPs was sweet to say that J is a perfect little 14 month old instead of stating, "despite being 4 years old, his behaviors are 2-3 years below his chronological age." While writing our transition statements for kindergarten, my co-teacher and I were careful to state what our kiddos CAN do versus what they can't. We didn't sugar coat things but we tried very hard to be positive.
Sorry, I didn't mean to ramble but I thought I should "set the stage" in order to make sense of what my reality was that day on that field trip. As I was saying, we get into our routine, we are positive about what all the kids can do and then we go on a field trip and reality hits. My two friends with autism are so overcome with anxiety. One has like 4 or 5 magnetic letters he's fumbling to hold onto for comfort. The other one is humming/moaning. It was as if he was saying, "ok, this is new, not sure where we are or what's going to happen. I'm in overload mode." My crack baby (I know that is so politically incorrect but forgive me just this once,) is jumping up and down trying to wriggle himself out of my hands, my CMV kiddo is screaming at my co-teacher and of course, my sweet chromosome friends are smiling, enjoying the view and taking it all in. As I was about to threaten bodily harm to my crack baby who was wriggling out of my hands, it hit me, we are not normal. Myself included. But then I asked myself, what is normal anyway? I'll save that entry for another day.
It also made my heart ache for their parents. Can you imagine, day in and day out, having to "set the stage" for your child with autism only hoping that you've done so in the right order and way so as to not start a rage? Or what about the gracious foster parents who are raising the crack baby? His foster mother hugged me the other day and said she appreciated the positive notes sent home. She said she knows its not an easy task teaching him. I said, we could never do as much as she and her husband are doing by raising this child. I could go on and on.
I'm not really sure why I felt the need to write this entry but I did anyway. I know I've written another similar one in the past but I felt the need to revisit. By the way, after the field trip, we went to McDonalds for lunch. My co-teacher caught me lining up ketchup packets in a row. (for those of you who aren't abreast to what's so special about that... its a red flag for autism!) Welcome to My New Normal!

2 comments:

Unknown said...

It can be shocking what becomes your normal when you think about it. I just wish that when others see a child throwing a temper tantrum, or behaving in a way that they think is inappropriate or not "normal" that they would try and give parents or caregivers the benefit of the doubt that they are not just not disciplining their child or teaching them what is right or wrong. Hugs to you for all you do for those kiddos! You are making a huge difference in their lives and such a wonderful support to their families!

Patyrish said...

aCK YOU MADE ME CRY AGAIN!

*you can totally borrow my title any day*

I love how you feel normal with these kids and how you don't think twice about their differences. I wish to God everyone felt this way but unfortunately it's a cruel world.

What I love most about you Janie is that you arent normal, and that's a huge compliment...I promise you.