'Ni 'Ni

Tonight I helped serve at the middle school youth group mystery dinner. The kids are given a menu with 16 items such as "butcher's helper(knife)", "Golden rod (carrots). The kids each chose 4 items per course for 4 courses. Some kids had a knife to eat corn with or a toothpick to eat jello with. They all had a blast.

We came home to K, Nate & Nick watching Star Wars Episode 1. Nick said "Ni Ni, sleep" so, he hugged everyone and I took him up and put him to bed. He is so sweet and he likes his sleep.

A fun day, Nate is recovering, a little bored since I kept him home today to recover some more.

CTTD #1

That's Cute Things They Do. Last week Nick rediscovered the viewmaster. He was walking around looking into it bumping into walls. Of course, he has to share.

The Wizard of Has (Oz)

One of Nicky's birthday presents was the Wizard of Ha's a Veggie Tales version of the Wizard of Oz. And he's been watching it over and over...and so have all of us. But it made us realize that the older kids have never seen the original Wizard of Oz movie. They know the rough story and most of the pop culture references.

The reason they haven't seen it is that I can't stand the movie. When I was little, it scared me to death. I couldn't sit still and watch it instead ran around the room. Especially in the scenes where the Wicked Witch of the West steals Toto and those in her castle. For some reason, my mother was frustrated and aggravated with the running around. So year after year we'd watch the stupid movie when it came on tv, I was scared and she was irritated.

It makes me wonder how many things I do as parent just because that's what everyone does that aren't the best ideas

Nicky to Nick

Another transition in the past year has been from Nicky to Nick. It started with the OT at school requesting that Nicky be taught to write "Nick" since the letters K and Y have diagonal strokes which are difficult to execute. His teachers started calling him "Nick" and we've sort of picked up on it. Nick seems a bit more grown up especially for my big six year old. (she says somewhat wistfully).

Catch Up Post #1: Nicky Turned 6!

Last Month Nicky Turned 6!

Obviously, Lightning McQueen and Woody are still among his favorites (we should have bought stock in Disney)

What an amazing year it's been:

• Nicky finally put it all together and started walking independently.
  
• He can now climb up and down stairs holding onto the hand rail and occasionally uses reciprocal steps.
  
• He is putting together two, three and longer sentences. Some are just words and some are combinations of words and signs.
  
• He can reliably recognize all of the letters and tell you the sound it makes.
• He can write NICK.
• He can count to 5 and recognize some numbers.
• He is starting to use pronouns correctly, although I do miss "carry you".
• He still loves music but is starting to be a critic of family members' singing.
• He knows how to operate the DVD player and can turn on the tv with a remote.
• He can operate the mouse to play computer games.
• He knows animal signs for a vast number of animals and can make the animal's sound.
• He's getting very good at bossing everyone around and ignoring us when he doesn't want to do something.
• He can throw and kick a ball.
• He's just such a love and a blessing.

Start of 31 for 21

Tried to post every day in October last year in honor of Nation Down Syndrome month and didn't succeed. Maybe this year will be different.

October 1 is a special day for us because Nicky came home from the hospital after 13 days in the NICU on October 1st, 2002. So, now it's been six years!

School Days

Everyday, after he gets off the bus, I ask Nicky how school was and if anything happened. Usually, he says "bus" since the bus ride seems to be the highlight of the day. Today, he made the sign for Police Officer (the letter C held to your chest). It's career week and the father of another student, a police officer came to visit his classroom. Guess he made a good impression. A nurse also visited but she obviously didn't make as big of an impression.

Nicky can also pick out his name from a list of four names, write an N and an i, and tell you all the letters in his name!

Letters vs. Numbers

Nicky can recognize all the letters, tell you what sound they make and even tell you some words that start with that letter. He knows that putting letters together makes words and can even recognize a few sight words. But, for some reason numbers are really tough. He can count to ten but if you show him a number he can't make the connection between the number and the word for it. I find it both fascinating and frustrating and for the same reason. He can obviously make a connection between an abstract concept of a written letter and the sound it makes. And the connection between a group of letters and a word and what the word means. But he does not apply the same numbers. With my older kids learning letters and numbers happened simultaneously, why not Nick? Something more to ponder and research.

In the Land of Pooh

Unfortunately, not AA Milne's cute cuddly character but the other kind. Nick's lower GI issues continue. The good news is he's getting lots of practice using the potty. The bad news is he doesn't always make it. This too shall pass..

I love Nick's school

I don't know what the future will bring for Nicky's education, but right now I just love his school. He's in an inclusion pre-K class, something I didn't think would be possible a few years ago. Tonight was curriculum night. Nicky has been sick since the weekend so he hasn't been in school. All his teachers wanted to know how he was doing and said what a delight he's been so far. I had so much anxiety about this placement and in the first two weeks has done well. He's been writing the letters N, I & K. He's learned their routines and is starting to use the potty regularly. And they are ok with the pull-ups.

Sigh

Warning: this a a feeling sorry for myself post...

My next door neighbor is having a party for all the rising kindergartners and it's driving the dog nuts. But, it's not the dog that's bugging me (or at least not most of it), rather that Nicky should be going to K this year and would be if he were a typical kid. Meanwhile, I've cleaned three pairs of poopy underwear in the past hour. So much for potty training which means he'll likely be moved either to the self-contained Pre-K class or back down to the Inclusion Preschool class he was in last year. Sigh. Now, it really wouldn't be moving back just staying in place. Sigh, sigh, sigh.

Light at the End of the Tunnel?

Sometimes, I look at my friends with typical kids about Nicky's age and am so envious of how independent their kids are and how dependent Nicky is. But, we've seen so much growth in the past year. Walking is a huge part of it, no longer having to carry Nicky has made life easier, we even go places without the stroller and he walks. He can feed himself and drink from an open cup. He's working on dressing himself. He's speaking more and understandable to others outside the family. He definitely can make his needs and wants known. If taken to the potty regularly, he's generally dry. BM training is not happening at all at the moment. Unfortunate, since he has between 1 and 3 per day it's a problem. It'll come in time, but I'm still hoping for an instant miracle.

Connections

Nicky's current movie favorites are the Ice Age movies. This afternoon he was watching the movie. I went to unload the dishwasher and he'd disappeared. He came downstairs a few minutes later with his stuffed elephant. He is now watching the movie copying Manny's actions. I just love it when he makes these sort of connections.

Milestones!

Nicky is officially walking! He's been taking independent steps since before Christmas but now he's doing it on his own and walking long distances without holding on to things. We went to the orthotist today and he was casted for AFOs (or was that SMOs). He didn't like the process one bit, he doesn't like anyone messing with his feet and the casting process is exothermic which he found more than slightly uncomfortable.

The other milestone is figuring out the computer mouse. He can now start up his favorite programs from the icons and click where he wants. His favorites are Dr. Seus's ABC and Cat in the Hat. I'm looking for suggestions for other programs he might enjoy. The kids received a new computer for Christmas and it doesn't run any of the programs I have from the older kids. It's an Intel based iMac.

Rip, Thunk

Nicky loves to take his shoes and socks off, will do it anywhere, anytime, he's given the chance.

We were driving over to M.E.'s school for a dinner and an open house. It's a short drive, less than 10 minutes. About halfway there I hear rip, thunk, rip thunk from behind me.

"Nate, did Nicky take off his shoes?"

"Yep"

"Nicky, don't you dare take off your socks."

After a minute of silence...

"Na, na, na..."

"Nate, did Nicky take off his socks?"

"Yep, and he's saying na na na boo boo."

Sure enough, in the rearview mirror, I see that Nicky has his thumbs in his ears, waggling his fingers singing "na, na, na"

I did the only thing I could, laughed.

I wish I had a Crystal Ball

We had Nicky's IEP meeting this week to set new goals and decide his placement for next year. His current teacher was somewhat bemused (or more like what the h---?) with his previous goals. Oh well, I think his new goals are more understandable and measurable.

His placement for next year will be in an inclusion pre-Kindergarten class. The other options are to keep him in the preschool class he's in or a self contained Kindergarten class. They pre-K curriculum is language based with an emphasis on pre-reading. I worry that we are selling him short and that he should be doing a Kindergarten curriculum next year. But, pre-reading is where he is, he recognizes most of his letters, is starting to associate sounds with them, can count to 5 more or less. Because of when his birthday is he will be in school until he is almost 22, so a few extra years at the beginning may be the best thing. But, we don't know for sure.

Also, they are not seeing any of the behavior issues we saw last year, with difficulty transitioning and refusing to work with or for therapists. We also decided against a full psych evaluation at this time, having him keep the developmental delay label. There are pluses to having him evaluated now but he also doesn't test well more by refusing to perform than by not having the ability.

That Potty Thing

We've been working on potty training for over 6 months now and are on a plateau now. Before Winter, break Nicky was using the potty regularly at school. Over break he was sick and I was lazy resulting in regression. Since school has been back in session school has had mixed results. He is starting to tell us AFTER he's gone. Progress? He is getting mixed messages by my slacking off at home. I wonder if he is developmentally ready or not. He certainly can hold his urine for several hours and is aware but it resistant. Oh well, no one ever said it would be easy.

STEPS!!!!!!!!!!!

I've heard reports of Nicky taking steps but never seen it. He's been getting to standing without holding onto anything and is very solid. Today, at a birthday party, I saw him take 3 small steps and then 2 more. YAY! He may be ambulatory one of these days.

Name Calling

The other night we were at our neighborhood pool. There was a father there with three boys, ages roughly 2, 4 & 6. Towards the end of the evening Nicky and the 4 y.o. were on the tennis courts chasing each other around. Nicky was growling and the boy was laughing. The 6 y.o. then joined them and started calling Nicky "idiot" and the 4 y.o. joined in with "poopyhead." As I was about to intervene the father came and grabbed both boys, berated the boys in the tone of voice usually associated with times when your kids have totally mortified you. After a few minutes of lecturing the father bought the boys over and they apologized to both Nicky & me.

Nicky was oblivious and had thought it was all just good fun. I, on the other hand, was very upset, visibly, so that I couldn't do much more than thank the boys for apologizing. If Nicky was a typical kid, the incident probably would have passed without notice or perhaps escalated with Nicky hurling his own insults. But, he's not, and this is the first time, I've experienced unpleasantness on his behalf.

Could the incident have been handled any differently? The boys' father was so furious I'm not sure they understood why their father were so angry. Not having overheard what he said to the, did he explain that Nicky has a disability? Should I have said anything? And, how to prepare for the next unpleasantness of this sort?

One step forward, two steps back

(or Nothing is as easy as it first seems)

First things I have learned in toilet training Nicky:

1. Nicky can hold his urine for over two hours or until underwear or a diaper are put on.


2. Dogs are good at cleaning up BM and seem to like the taste.


3. While his siblings enjoy potty humor they are grossed out by potty accidents.


4. Warm water on hands really does trigger urination.


5. Staying home most of the day is really boring.

I've been letting Nicky hang out around the house bottom-less most mornings (much to the chagrin of big sis). Then I've been putting him on the potty at intervals. We've had some moderate success and some major failures. This morning started out with a pee accident. Then about an hour later Nicky took his walker into the bathroom. When I went in after him has said "potty". Put him on the potty and he had a BM. Hooray!!! Call Daddy. Give Nicky a cookie

Less than an hour later again he says "potty". Put him on, he sits a while, strains a bit, says "all done". Not five minutes later he had another BM, this time on the porch (this is where the dog comes in.) SIGH. Then about 20 minutes later another BM. SIGH, SIGH.

And, yes he did have three BMs in less than two hours. That's part of the reason I'm pushing for potty training. We are in the midst of a work-up for Celiac. He had the blood work yesterday and I took a stool sample in today. (Had lots of collection opportunities.) Looking over Nicky's record, he hasn't gained any weight in the past 18 months, but has grown almost 2 inches. This is somewhat typical for toddlers but he's at the top of the DS charts for height but falling on the weight charts.

One of these days I will post some knitting. Been doing a fair amount, but lots of startitis.