Star Student (I knew this day would come)

I just received an e-mail from Noah's teacher that Noah will be star student next week. The star student has a board in the classroom where all sorts of information about them are posted. There are also pictures about their life: the family vacation last summer, learning to ride a tricycle, baby pictures, etc. Every time I look at these boards I feel a lump in the pit of my stomach. I knew that this day would come and I would have to make a decision. I have numerous baby pictures of Noah, many of which I cherish, but none of them look like normal baby pictures. I have a pictures of Noah coming home from the hospital: all 3 times. I have a picture of his first extubation and the day that they put two IVs in his head and he looked like he had horns. I have a picture of him propped next to his pulse ox the first time he satted 100 without O2 and pictures of him covered in tape from the times where he had to have O2, hearing aids, and eye patches all at the same time. These are all fond, happy memories, but I'm not sure I'm ready to share any of that with Noah's kindergarten class. They're my special memories and I don't think the teachers and parents would understand why they're so special. At least I have until Monday to decide.

Dear Teacher, (the real letter)

We would be happy to discuss your concerns about Noah mentioned in the frequent notes and e-mails prior to Christmas break. We don’t feel that we were able to communicate effectively with you in writing, so hopefully an in person meeting will help. Please let us know a few possible times and we will get back to you with what is best for us.

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!

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.

Potty Training and other significant delays

Yesterday my sister in law posted on Facebook that her son had been accident free for 4 days. It was day 9 of potty training. Noah is a full 3 years older than his cousin and I think he's only ever had one accident free day in his life. He is making success with potty training, and this year is easier than last year, and someday maybe (hopefully) he'll start knowing when he needs to go and/or become willing to try to go at school eventually. Clearly that day is not coming anytime soon, though.
Yesterday at church Noah was chasing his friend's baby brother around the church. He chose to chase him because he could never keep up with his friend (6 months younger than him) or his friend's little sister (2 years younger than him).
On Monday I substituted in a 3 year old preschool class. Many of them needed less assistance than Noah does for regular things like putting on a coat or opening a backpack.

It can just be a little depressing.

It's not that Noah can't do those things, because he is always making so much progress and I know he'll do them someday. The hard part is watching Noah's friends, and then his friends' little sisters, and eventually his friends' baby brothers pass Noah at lightning speed, knowing that although he's chugging away he'll never catch up. I'm so thankful for all he can do, but someday he's going to realize all the things he can't do that other kids his age can and I dread that day.

Pre-Teaching

One thing that our AV therapist always drilled into us was the importance of pre-teaching material to deaf children. If Noah is spending all of his day trying to figure out what was said, he's not going to have much time left for learning. If we introduce important vocabulary or concepts in advance it puts him on a more level playing field with the rest of the class.

As Noah gets older I imagine that pre-teaching will be boring and tedious, but in kindergarten it's lots of fun. It's apple week at Noah's school so we decided to take a pre-teaching field trip to a local orchard. We came home with a half-bushel of fresh picked apples and a boy tired enough to go right to bed. Noah came home with lots of new vocabulary (and a few new bruises, but at least he didn't fall down the mountain!). All in all it was a great trip.

Observation

I'm getting ready to head out the door for my first observation of Noah in his new classroom. Our new district is pretty strict about parent observation: I had to get permission from the principal and I'm supposed to keep my time in the classroom to just 30-45 minutes. It seems a little ridiculous to me since I won't even get to see the entire math lesson, but I'm trying to play nice. I find it very interesting that although I was 99% sure that Noah was not yet using an FM system at school, it was not mentioned to me until yesterday afternoon. So much for Noah not listening or paying attention. He has to be able to hear to do that!
I almost cancelled on them today since this will be Noah's first day with his FM and he's not liable to be acting like himself. I decided that at the very least I'll get to check out his FM system if I come in today. Plus I didn't know if I'd get another chance to observe since there are so many hoops to jump through!
Even without the FM system he's coming home with a lot of new language. I think it's great to hear all the little kindergarten slang words, although I'm not sure I'll be thrilled the first time he brings home a naughty word. I really hope he acclimates well to being in this inclusion setting, because he's benefitting so much from being around the other kids. Only time will tell! Nine more days 'til the IEP.