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.

Anne's Excellent Goodwill Adventure

Cate's post on cleaning reminded me of my own adventure cleaning before Christmas.

It all started when I went into the junk heap basement store room looking for Christmas decorations and couldn't even reach them. A fit of recycling, tossing out, trips to Goodwill ensued. Not sure why we had saved every box from every electronic, computer, peripheral we have bought, but we did. Out they went.

The 6 boxes of stuff that were moved unopened from California containing hubby's bachelor kitchen equipment were dispatched to Goodwill.

Turns out the kitchen boxes contained dishes that my MIL had collected week by week with a grocery store coupon. Could I possibly check with Goodwill and see if they still have them?

Over to the drop off location. The truck has been sent on.

Over to the nearby store. Meet a very nice lady named Peggy who called the central office and see where the truck ended up. Go home and find a box with 10 diner plates.

Call Peggy again, still no news.

Go back to the store the next morning. Good news the truck ended up there! Buy back the dinner plates, bread plates, and cups & saucer. No bowls, though.

Tell hubby couldn't find bowls. He says "oh yeah Mom never bought bowls." 

I'm not sure what the moral should be? Never get rid of anything? or Ask hubby first?

Oh the storeroom still contains an old furnace we kept when we replaced when the A/C died a month after we bought the house, since we might some day build a vacation home and need it. Ditto the oven & cook top from when we remodeled the kitchen.

Space Cadet

Last week, I had to cancel a dentist appointment because Nicky had strep. I called and rescheduled it the same day. I could have sworn that the receptionist said Wednesday the 23. But it turns out that it was Wednesday the 30th. That I didn't called to confirm yesterday should have been a clue. Oops, showed up today and was told it's next week.

Scary Things you Don't Want to be Told

"Here, hold this fire extinguisher in case the wiring starts to spark while I flip the light switch."

"That hump in the floor should go away after I put the header in and take the jacks down."

Yes, hubby is redoing the basement, including replacing headers, sure hope he knows what he's doing.

Snow!

Yesterday we had a somewhat unusual occurrence, although it's happened twice within the week. That is snow.

Neighborhood kids at the top of the hill.

 Nate sledding

Nicky looking out at the white stuff. He kept expecting Frosty.

Our back yard, blanketed.

WIP (Work in Progress)

Since this is sort of a knitting blog as well, here's a peek at some of the WIPs that aren't my children.

I've been playing around with mitered squares lately. Here are some knit with Patons SWS. Someday they may end up as an afghan. Don't know if it will be ugly or just interesting. M.E. has been playing with different layouts. I still have a lot of squares to go and not sure if there will be a border between squares or just around the edges. I debated between stockinet and garter mitered squares and ended up liking the feel of stockinet better. But they are slightly trickier to knit.

The beginnings of a baby sweater for a co-worker of K's. I fell in love with the feel of Berroco Comfort. It's worsted weigh nylon/acrylic. I was looking for something in a nice supper-wash wool but nothing struck my fancy. This pattern was originally written for DK, so the fabric may be too stiff. Plus the yarn is more than a little splitty.
Argh, in looking for a link I noticed that a DK weight is available as well. Didn't see that at the yarn store.

Seven Things Meme

Some time ago Beth at Not That You Asked tagged me with a meme to list 7 random/weird things about me. So here goes:

1. I have a weird fetish about double light switches. We have one in the hall at the top of the stairs that controls the upstairs hall light and the foyer light. Both switches have to be in the up or down position, not mixed, I'll even climb stairs to change them.

2. I was an organic chemist in a previous life. I once set a fume hood on fire when potassium metal boiled out the end of a condenser tube. I used a one of those solid fire extinguishers to put it out. There is a cartridge that needs to be replaced after they have been fired. Someone forgot to do it, the next lab fire was pretty serious and the solid fire extinguisher wouldn't work. The entire building was evacuated because of the fire. Fortunately, it was put out.

3. My job was eliminated while one maternity leave with my daughter, I'd really wanted to quit but it still hurt to be fired. The 6 months severance did help ease the pain.

4. I've been pregnant 10 times, but only 3 live children. During my last pregnancy we filled up all the spaces on form.

5. My middle child's name came to me in a dream about Nathaniel Hawthorne. Otherwise, he would have been Nicholas, which we then used for Nicky.

6. I can't stand the taste of celery, don't like the texture much either.

7. I've never been on a diet per se, I'm now 30 pounds more than when I got married, I really need to work on eating healthier, but I like to bake too much.

I'm not sure there are any readers anymore so, if you read this consider yourself tagged.

Setting the table

The other night Nicky wandered into the kitchen and saw that I was making dinner. He sat at his seat for a moment, then picked up his plate, silverware, and napkin. Carried them back into the family room and set the picnic table set up in front of the T.V.

He was so cute, I had to take a picture, and then another..

Ouch! That light hurts my eyes.

When I told him that he had to eat at the kitchen table, he brought his stuff back into the kitchen and reset his place.

Cozy?

Here are 8 of the 24 dish clothes I knit for teacher & friend holiday gifts. I packed them with a bar of melt & pour soap. However, it's obvious from some of the thank you notes that the recipients had no idea what the dish clothes were. Several thanks were for a "cozy", what's a cozy?

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.

Cleaning

Some days I feel like such a housewife and others, well you know. I managed to clean the main floor (dusting, vacuuming, moping, cleaning toilets, counters, etc.) in just about an hour. The actual cleaning never takes that long once I start but I have such a mental block about starting. I also like to have at least a 3 hour block to devote to cleaning, but haven't had that in two weeks. So, since feet were starting to stick to the kitchen floor...

A lot of cleaning time is really just picking up, if I could just get the kids to pick up after themselves, life would be better. In September, I did a major declutter but I noticed things are starting to junk up again. It's mostly stuff being thrown in the laundry room or on the dining room table rather than being put away.

I'll get to it, after Christmas? We'll see.