Saturday, May 30, 2009


Today is Noah's 4th birthday. I should be happy, right?

This has been a year of realization of just how far behind Noah is and will continue to be. In some areas he's right where he should be, or advanced (heck, he's starting to read!). He continues to exceed expectations in so many areas and works hard to lean new things that are easy for other kids. But there are so many things he can't do, so many things that he'll never do.

Today on his birthday I can't help but think that those things are my fault. He was perfectly content inside me, happy as a clam, and they took him out almost 16 weeks early to save MY life. With the exception of ONH all of his delays and disabilities are a direct reult of his premature birth.
When he wakes up I'm going to be happy and excited for his birthday and we're headed for the amusement park, but for now I'm just sad. It's just not fair that such a great kid should have so many obstacles in his little life.

And yet, look at how far he's come...

Wednesday, May 20, 2009

To Whom It May Concern (a vent)

To Whom It May Concern:
I'm sorry that changing Noah's CI batteries is an inconvenience at school. I'm sure that if you thought about it you'd realize how much more inconvenient it is for him to not be able to hear.

To Whom It May Concern:
If Noah was really able to intentionally throw a plastic lion at a classmate in order to hurt him, someone should notify the physical therapist. She has yet to have success with getting him to throw a ball with any type of aim - perhaps plastic lions would work better?
Punish Noah for throwing a toy, but don't assign malicious intent when none was meant.

To Whom It May Concern:
A few therapy appointments does not give you the right to tell a parent that they have royally screwed up their child's IEP. Please keep your opinion to yourself unless requested, particularly when it doesn't concern your area of expertise. It would certainly be nice if all OT appointments could take place in a mainstream classroom setting, but working on Noah's goal of removing his pants independently hardly seems like a group activity. Once you know me better feel free to berate me for being a bad advocate for my child, but you haven't earned that right yet.

To Whom It May Concern:
Jesus commands his disciples to preach the good news to everyone (Mark 16:15). That includes children with disabilities whether you like it or not. Meeting my child's spiritual needs is a mandate from God to his church. That doesn't mean that all Christians are called to that ministry, but it does mean that saying it's too much effort for little benefit or it takes resources away from the normal children is wrong. Get over it, because I'm not going away and neither is Noah.

Thursday, May 14, 2009

s-p-e-l-l-i-n-g (aka my kid's a genius)

Noah has for some time now been able to tell you the first letter sound of a word that he heard. He would spell his name "N-x-p-y-t-q-n-n-b" (or some other variation) because he knew that it started with the "n" sound and then had a bunch more letters. He's recently begun hearing more sounds in a word and is now pretty decent and getting most of the consonant sounds correct. Anyone care to guess what word he "spelled" in the picture?*
He also has quite an extensive sight word vocabulary. It's pretty impressive for an almost 4 year old, even if you don't take into account that the only print he has access to is 24 point font or larger (just the title in most books). He's also pretty good at guessing other words based on words he does know. So I did a little test with some refrigerator magnets, and here are some of the more interesting results. (the word-what Noah said)
just - jump
you-thank you
I didn't include any of the words he actually got right, which was basically any animal or color that I could think of plus the days of the week, months, etc. As a general rule if it's on the calendar at school, on any of his movies, or in the title of any of his books he knows it.
Since Noah loves spelling so much, yesterday for part of "new ear" time I got out scrabble and had him spell words that I said. He was so focused on finding the letters to spell that he didn't notice that he was listening. I might have to try that with the ling sounds too, since I'm always looking for new ways to trick him into repeating them.
* Hint: Noah's life revolves around his favorite activity, shopping.