Sad, take 2

I really do have happy things to post about, I promise. Field day and field trips and birthday parties... it's been a whirlwind of fun. But alas, again this evening I'm sad.

I'm sad for a family that has been through so much trauma who now have to go through more.

I'm sad for a sick little girl who is likely very confused right now.

I'm sad for a mother who felt her only solution was to harm her child.

I'm sad for those of us whose children are sick just because they're sick who might now face a little bit more suspicion or questions - maybe we're causing our kids' issues too.

So sad.

Sad

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...

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.

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

we-Wednesday

you-thank you

down-brown

up-SuperWhy

she-share

this-think

them-come

so-socks

like-bike

little-light

some-sorry

they-tree

be-bear

with-white

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.

2 "ears" are better than 1

The official report from school is that Noah is actually holding conversations with them and responding to questions occasionally. He's had lots of issues with background noise in his classroom (don't even get me started on THAT situation) and he tended to keep to himself because, in my opinion, he didn't have a clue as to what was going on.
I got to see the improvement with two CIs first hand on Friday when I went to pick up Noah. He was able to hear his 1 on 1 saying goodbye to him and respond appropriately in spite of the facts that there were 2 classes of rowdy second graders in the hallway, he was facing away from her, and he was talking to someone else at the time. Wow!
He also seems to be doing well with just the new ear, although being the bad (read: busy) mom that I am, he hasn't been getting nearly the hour a day of new ear work that we had planned (closer to 30-45 minutes most days, and not at all yesterday). He's much more consistent about repeating the "s" sound from across the room than he was earlier in the week, has no problems answering questions about familiar books or topics, and seems to follow about 90% of conversation (only having trouble when I talk too fast or don't annunciate clearly). He is able to do all his ling sounds with background noise and although he still occasionally mixes up "oooooo" and "mmmmm" with each individual ear, he's getting them every time with the two ears together.
Overall I think he's a superstar and deserves some kind of award for his amazing brain-making-critical-connections abilities. I, on the other hand, am still a little overwhelmed at the have-to-keep-track-of-two-processors-that-aren't-interchangable-with-two-batteries-that-die-at-two-separate-times thing. Not to mention the get-less-sleep-and-do-less-housework-because-you-spend-all-day-Monday-going-to-Northern-VA-for-therapy thing. Maybe I should get an award too!?
I'd settle for a nap and a maid.

Slow down, Noah!

Noah is moving way too fast for me with this new ear thing. I know that he's supposed to acclimate to this ear quicker than the old one, but not THIS quick. Our new AV therapist (the one we're starting with on Monday) said that for the first month or two we would be working on the "learning to listen" sounds from way back when. Getting him to turn to the "aaaaaaaAAAAA" sound, getting him to pick out the airplane from a group of toys when he hears it, etc.
So when we've been having new ear time (about 30 min./day right now), one of the things I've been doing (besides reading familiar books, singing songs, etc.) is I brought out all those old learning to listen toys. Day one when he picked the cow out when I said "moo" I was pretty impressed. Today not only was he hearing all of the learning to listen sounds, he was repeating them all correctly (no more robot talk - apparently we sound normal now). He was also able to answer simple questions about a familiar story after we read it ("What color is the fox?" - "orange", "Where was the rabbit sitting?" - "under the leaf", "What does a blue bird say?" - "tweet tweet").
I know he's not understanding things as well as with his other ear (obviously!) but he's picking up a whole lot more than I thought he'd be able to. Is that normal?

T Shirt

Those of you who know Noah know that he likes to make his presence known. One of Noah's favorite things to do is to sing boisterously while shopping. We get a lot of looks and a lot of comments. Most often I hear "What's wrong with him?" so I've come up with a helpful response:

Seriously people, there's nothing wrong with him. He just likes to sing. And it's not exactly polite to say "What's wrong with him?" He CAN hear you, you know. Has it ever occured to you that you might be the one with the problem? Just thinking out loud...