Thursday, December 16, 2010

Dear Teacher,

Thank you for always assuming the worst of my child. He really wants to try his best knowing that you will criticize his every mistake. Refusing to praise his positive behavior is a great tool, and one we would like to try at home. I think the withholding of praise will make Noah try harder to do his best each day.
You are right to punish him vocally in front of the entire class. I'm sure that you're right and it will not affect the other students' views of him at all. He is an evil child and needs to be broken in a way only you can do.
I also appreciate your daily criticism of my parenting. Knowing that you assume everything I tell you is either a lie or misguided makes my day so much better. I look forward to opening your e-mails each day to read the gems of wisdom that you have for me. I'm considering starting a scrapbook of all of the lovely typed letters that come home in Noah's backpack as well. What a great keepsake. Thank you! Please continue to berate my child for the affects of his disability. It makes life so lovely for our family. I'm so glad you're a part of our team. Enjoy your snow day. I know we will!

Friday, December 3, 2010

Changes Through The Years

At the top of my blog you can see the following statement that I wrote when I first started this blog:
This is the story of my life as a SAHM to a deaf-blind former 24 week preemie. Isolating, frustrating, heartbreaking, and so worth it.

Things have changed a bit since then.

I'm still mostly a SAHM, but I do substitute occasionally at the school where I used to teach now that Noah's in full day kindergarten. It's nice to get out of the house, although it is sometimes weird to me that everyone else's normal, seeimingly stress-free lives continued while I was at home drowning.

Noah's still got that dual sensory impairment, but he's learning to use his remaining hearing and vision to his advantage. He still strongly prefers auditory and touch input to visual, but he does use his vision as well.
The preemie thing will never go away, and it haunts my dreams. I can't bear to deal with my friends with newborns, but warm up by the time the babies are a 2 months old or so (which, coincidentally is the adjusted age that Noah was when he came home from the NICU). I'm afraid to have another baby, and sometimes I think I'm more afraid to have a full term baby and hate it then I am to have another preemie and deal with all the drama and stress that it brings.

Life is still frustrating and often heartbreaking, but not so isolating anymore. I have managed to build a wonderful support network full of moms who understand what my life is like. Many of them only know part of my story, having either a deaf child, or a blind child, or a preemie, but I think having a child with any type of struggle makes you more open to other families with less-than-perfect children.

The one thing that hasn't changed at all is that it's still so worth it. For all the stress and drama and heartbreak, I can't imagine not having my sweet, smart, charming little boy in my life.