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!

First Day of School Pics

Only about a month late, first day of school pictures.

Nick & Dad waiting for the bus

M.E. & N at the door, a traditional shot

N at school, I took this one to annoy him

M.E. at the bus stop another chance to bug my kids

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.

Seven Days From Now...

Is the first day of school! Yay! Boo! Never thought I'd say this when the older two were younger but the summer is much too short. Only 11 weeks, it goes much too quickly. Is time speeding up? Or just old age?

Most of what I wanted to happen this summer has. But Nicky still isn't potty trained. He's supposed to be trained for the program he's enrolled in this year. At this point, he's mostly dry if put on the potty at regular intervals. But, he doesn't initiate anything, so I guess I'm the one who's trained.

Still hoping for a miracle.

Why?

Why is it that I obsess about what could have been, or might have been or should have been, instead of what is? Especially since what is is pretty darn good?

And awfully darn cute?

Sorry for the long absence from posting, the end of school and start of summer has just been crazy. Back to semi-regular posting soon.

Encounter

A few weeks ago, I took Nate to urgent care for an ear infection. Nicky came along. While we were sitting in the waiting area, a woman sat down across from us. Somewhat hard to understand, she asked if Nicky had Down Syndrome. I replied that he had.

Then she said: "I had Reye's Syndrome when I was 6 years old. I almost died. Now I can walk and talk. I'm a miracle baby!"

Writing, it doesn't sound all that remarkable, but this woman's joy in her accomplishments and life was so contagious I just had to share. I hope my own miracle baby has as much joy in his life as she did.

You're Weird...

There is a restaurant in our village with a large grassy area in front. After eating their dinners the kids play while their parents finish up or enjoy another glass of wine. Sometimes, I'll send Nicky out with M.E. and others I go with him. He's walking but still looks a little like frankenstein. Last weekend, I went out with him while K stayed behind to pay up.

As we were walking out a little girl, about the same age, ran out of the restaurant next door. She saw Nicky and started running circles around him taunting "you're weird" in a sing song voice. It hurt and made me angry. I know, if something similar had happened to M.E. or Nate the incident would have been laughed off and forgotten. But because Nicky is different it stings and I can still hear "you're weird" running through my head. Also, because 99.9% of our interactions are positive this one sticks out even more.

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.

Nate's First Place Tech Fair Project

Nate won first place in our state technology fair for third grade, multimedia. Here is his project, originally in powerpoint, now turned into a movie.

Considering I was a chem major..

I should be able to pass this thing. Although, I did need help from M.E. on one thing.

I've always suspected that...

Walking to school with Nate the other morning he said:

"Two boys, a husband, a girl and a dog, you have a tough life. You know you're our slave don't you?"

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.

Things I never expected to say to my daughter

Don't point your epee at that boy just because he threw snowballs at you.

I couldn't handle a special needs child...

I don't know how many times I've heard that phrase. Usually followed by some sort of praise or comment about how strong I/we are. But, that's not the case.

When I was pregnant with Nicky, the AFP indicated possibility that he had Down Syndrome. Throughout the pregnancy I prayed he didn't have Down Syndrome since I was sure that I couldn't handle it.

When Nicky was first born (at at times since then) I've been totally overwhelmed by the thought of the future and was sure I couldn't handle it. While he was still in the hospital I joined several Down Syndrome news groups, mailing lists and online forums. The information and new words were overwhelming, IFSP, OT, PT, IEP, hypothyroidism, hear defect, Hirshsprung's... the list goes on and on. Before leaving the hospital we were referred to early intervention, a program that provides therapy in home to children under the age of three with birth defects, and delays. we were also given paper work to apply for Medicaid for Nicky.

Once Nicky was home we realized that caring for a baby with Down Syndrome isn't all that different than a typical one. He was a little more floppy, we were worried about weight gain and he had a few more doctor's appointments. But day to day it was the same. I learned I could handle a child with special needs at home.

When Nicky was a month old we had our first visit from EI. A caseworker came with a nurse and a special educator. They complemented us on Nicky, how cute he was, all the things a new mother loves to hear. They suggested because of his tone we should have an evaluation by a physical therapist. She came a few weeks later and we started into the whirl of therapy, by the time Nicky was three he had 4 therapy appointments a week. But, along the way I learned that I could handle therapy and a child with special needs.

Turning three means a transition from EI to the school system as the provider of therapy and education for a child with a disability. For about a year before hand I was very apprehensive about the transition. The terms were sometimes different and the process was slightly different but the end result was the same, a group of therapists and teachers working towards Nicky reaching his full potential. Afterwards, I realized that my apprehension for Nicky's transition from EI to the school system was very similar to the transition of my older kids from preschool to kindergarten. And I learned I could handle a Nicky and the school.

Nicky's future as a teenager or an adult with a disability do overwhelm me at times. But, I realize that by that time I will be the parent of a adult with a disability not the parent of a preschooler. And I will be able to handle him and whatever come.