My Noah

Noah's never been normal. He's always done things his own way and in his own time. He's lived through things that should have killed him and he's met milestones that the experts said he would never meet, but he's just never been normal.

We often hear from people things like "How can he _____________? He can't even _________________!" Often times the comments are ignorant, things like "He can speak, so he should've been able to hear me." or "He saw that, so he should be able to see this." and in that case somebody needs a bit of an education. But sometimes you just have to admit that as little sense as it makes, Noah's strenths and weaknesses are what they are.

Noah is reading at about a 1st or 2nd grade level, but most of my friends' 1 year olds have surpassed Noah in feeding skills. How is that possible? Well, chewing and reading just really aren't all that related. Although most kids can chew before they can read, there's not any direct link between those 2 things.

But sometimes the skills ARE related and Noah can do a complex skill, but not the seemingly easier one. For instance, Noah is able to repeat back a long sentence, but has difficulty with a shorter string of words. How is that possible? After much confusion we've figured out that Noah can recall the sentence because he's using his comprehension skills, but with just the list he can't bring that strength into play.

Or how about this... In AV therapy this week we were having to guess a hidden animal by asking questions about it. When it was my turn to guess Noah was able to answer all of the open ended questions about his animal correctly (where does it live, what does it eat, what color, etc.) but if I asked a yes/no question he got stuck every time. So for instance if I asked him "Where does the animal live?" He could correctly tell me "the jungle". But if I asked "Does the animal live in the ocean?" he couldn't tell me "no". Even when we ask those questions back to back, it goes something like this...

Where does the animal live? the jungle
Does he live in the ocean? yes
I thought you said he lived in the jungle? yes
Which one? Does he live in the jungle or the ocean? The jungle!

Sigh.

Maybe sometime I'll understand all his little quirks and why he is the way he is. In the meantime he just is what he is: my Noah.

Stuff

We're deep into the planning process for our summer trip to the John Tracy Clinic. The more I'm thinking about it, the more overwhelmed I am by the number of things we will have to take with us.
Remember those first doctor appointments after the NICU when I had to always bring a friend because Noah and all his stuff (O2, monitors, feeding pump, diaper bag) couldn't all be carried by one person? When we got rid of the feeding pump I typically tried to do it myself, although not always successfully. I'm surprised the ENT even made us go through with the ABR after that appointment when I grabbed the monitors with the wrong arm, disconnected everything, and sheepishly walked back with my (still sleeping) baby and two different alarms blaring. Boy am I glad those days are over! Even so, just getting ready for Sunday School still involves two bags.

At any given time we typically carry the following:
- food for the amount of time we'll be out of the house, including one extra meal and some extra milk in case a "do over" is needed
- Ikea plastic spoons and one of the few types of straw cups that Noah likes
- bibs, cloths for face wiping or mopping up messes, and "pukeys" (aka barf bags)
- a few books or small toys for feeding rewards
- some type of seating for good posture while eating (either a car seat, stroller, or a booster chair depending on the situation)
- whatever medications will be needed in the time period we'll be out
- Thick it and any calorie additives that haven't yet been added to the food/formula
- a change of clothes (two if we'll be out all day)
- pull ups, and wipes
-stickers for potty rewarding
- extra batteries and headpieces
- Mr. Cane
- a dome magnifier
- a hat in case of unexpected rain

So what do you take with you when you go out?

Cafeteria Lunch

Yesterday at the grocery store Noah asked me when he could buy lunch in the "cafe-too-ia" like all the other kids. Noah loves food. He likes to look at it, smell it, and talk about it. Sometimes he's ok with touching it. Eating, not so much. I don't mind this most of the time. I'm more than happy to let Noah lick all the chocolate off a thin mint or practice putting green beans on a fork when we have them with dinner. I'm even ok with ordering an overpriced applesauce side dish at restaurants when we go out to eat so that Noah can feel like a part of the group. But for some reason I balk at this one. I wouldn't mind letting Noah buy lunch occasionally if it was something that he would actually eat (like a la cart applesauce, for instance), but paying for the priviledge of letting Noah look at the cafeteria food seems a bit ridiculous to me. I just can't see spending money on that.