I pledge...

Is he not the most adorable little boy ever?!

I wanted to post this video for 2 reasons:

1. How cool is it that he memorized the Pledge of Allegiance?

2. Aren't kids so funny? He was trying to make a joke by saying "The United States of A-Noah". He was obviously quite pleased with himself over it. Where do they come up with this stuff?!

School revisited

Noah is finishing up his third week of school and things are actually going fairly well. So well, in fact, that I've had time to worry about next year.
Next year Noah will be in Kindergarten. Had he been full term we probably would've held him back a year since mid September is right on the border but he was born 16 weeks early.
As a reward for 7+ months of hospitalizations, a lack of vision, a lack of hearing, major fine and gross motor delays, virtually no feeding skills, and some pretty significant sensory issues we've decided to accellerate his schooling. It doesn't seem quite right to me, but neither does another year of preschool when he's ready academically for Kindergarten now.
Kindergarten is a whole different ball game than preschool. I've been looking at the Kindergarden SOLs for our state and I'm terrified. Absolutely scared out of my mind.
Because I think he can't learn the material? No, I know he can learn it. I'm terrified because I have to trust someone to effectively accomodate Noah's special needs so that he can access the information.
I visited Noah's mainstream class on Tuesday, and I was pleased with what I saw. He was doing the activity well and it actually wasn't as loud as I expected. They made sure Noah sat in the front for circle time, and they had his special scissors right there ready when they were doing a cutting activity. The table that he sat was at the edge of the classroom in a not overly visually stimulating part of the room, but not in such a way that he was isolated. While he didn't attempt to make small talk, the other kids did talk to him and try to include him in their group.
But then the teacher held up the paper so "everyone could see" as she gave the directions. Everyone except for the kid with no peripheral vision that is. According to his IEP he's supposed to get to manipulate all materials, which means he should've either had another copy of the paper to follow along with (ideally) or she should've held it down to reiterate her directions before or after she held it up. I have no doubt that it didn't even occur to her that it was a problem, and I have no doubt that the vision teacher will talk to her and she will always hand Noah his paper before she reads the directions from now on. But I can't always be there for every activity, and I can't think of every possible issue that could come up.
He missed the directions for an activity on Tuesday, but he already knew the information. There is so much in Kindergarten that he doesn't yet know, so missing out on even a small part of the instructional time is huge. He can learn if he can hear it and see it and stay on task and not get overwhelmed or distracted and if he has the background information to understand the concept, but those aren't exactly easy things to overcome. Scary. Terrifying. How many more years of this are there?

School

One week from today Noah will be going back to school. He is very excited, but I'm a little stressed about the whole thing. I'm not sure what a great placement would look like for Noah, but his current situation is ok. Not great, but adequate. I suspect that some of my concerns are just personality issues with his teacher. She's a wonderful teacher, but we don't always see eye to eye on things.
What I like about Noah's school:
1. vision services - this is the #1 reason that we don't want to change things. His vision teacher is awesome! She's also dual certified in O&M which is a huge plus in our book.
2. related services - PT & OT rocks! It would be nice to have a speech therapist familiar with deaf students, but I have no complaints about his current ST.

What I don't like about Noah's school (the abbreviated version):
1. Lack of communication. Perhaps I was spoiled by working at a private school that expected parental involvement, but it would be nice to know the date/time of class parties before they happened rather than after. The only time the school seems to want to talk to me is when Noah is misbehaving.
2. Discouraged interaction. I would love to be the room mom, to volunteer for things, help out, and get to know the teachers, students, and other parents. I definitely got a vibe that that was not encouraged. Heck, I was told parents weren't allowed in the classrooms at all (the principal mentioned the school's open door policy at an IEP meeting partway through the year or else I'd still think that).
3. Punishment for disabilities. This isn't an overall every day issue, but there have been times when Noah has been put in time out for "not listening" or "not looking". Ummm... yeah. Deaf-blind, anyone? I get that Noah can cause trouble when he wants to, but if he can't hear/see what you're doing he can't listen/look at things. It would just be nice if they verified that before they punish him.
4. Lack of hearing services. Noah's hearing services consist of a (wonderful, which is the only reason it works) teacher of the deaf talking on the phone to Noah's SPED teacher a few times a month. I really wish there was at the very least someone at the school building who could see him in class and point out that he can't hear the teacher when he sits next to the screaming autistic child. He had hearing goals last year, but they weren't worked on until the end because he didn't have direct hearing services and no one wanted to take responsibility for them. Hmmmm....

What I'm nervous about..
1. Noah has a new 1 on 1 aid that has not been trained on his feeding protocols (yet - that's Thursday) and as far as I know can't tell a cochlear implant from a bluetooth headset.
2. Swine flu. Ok, sickness in general. Noah is aversive to soap and I'm not sure that they're particularly keen on pushing the issue. His lungs held their own fairly well this past year, but that was only minor illnesses.
3.Social interaction. Noah loves other kids and he tries sooo hard to play with them, but he doesn't get it right very often. He does have friends, but not at school. He'll be in a regular classroom for part of the day this year, and I'm not sure how that's going to go.

Summer

Somehow I had the mistaken impression that when summer came things would slow down a bit and we'd have a nice break. Alas, summer is almost over and things are busier than ever. I find myself wondering how exactly we will fit 4 days of school into our already packed schedule.
Well as I posted in my last post we ended May with Noah's awesome birthday party at Chuck E. Cheese. He had a blast and it was the first time that I really saw him interacting with other kids without prompting. Most parents tell me that Chuck E. Cheese brings out the worst in their kids, but Noah's always been a little different.
June brought the end of the school year and an awesome vacation in Williamsburg. Noah absolutely loved the living history aspects of Historic Jamestowne, although he also enjoyed going to the pool each morning before breakfast, swinging at the playground with his cousin, and just generally hanging out with extended family.
July was busy with therapy. We had our drives to DC for AV therapy, drives to Richmond for feeding therapy, and ESY services on the other side of the county (OT, PT, Speech).
In August I actually got away for a bit, to the Low Incidence Disabilities conference at Penn State as well as a day workshop in Richmond dealing with kids & deafness. Grandma was happy to fly down for a few weeks with Noah, which made it much easier for me to get away. ESY was done, so we were down to just the AV therapy and feeding therapy, along with normal doctors appointments, mappings, etc.
For those of you who are thinking, "that's not so busy", don't forget that we have to spend 45 minutes 5 times a day working on feeding skills, one hour a day of "new ear" time plus additional set aside time working on localization and listening in noise, 30 minutes a day for handwriting/fine motor work, 20 minutes a day for Braille, 30 minutes a day for math skills, 30 minutes a day practicing balance skills/stair walking/etc., and now recently, sit with Noah at the potty for 10 minutes out of every hour. It reminds me of when Noah first came home from the NICU - after all of the required tasks are done, when are we supposed to sleep? In reality I don't spend all of that time on all of those things - who could? I just try to fit in some of each of those things into our daily routines (except for the potty, because not prioritizing that leads to puddles). Most of the therapists seem to understand, and the one that doesn't doesnt like me anyway so I tend to just tune out the lectures.
So, what have you been doing this summer?

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.