Friday, December 2, 2011

I am a Lioness

When they told me that a mother is her child's best advocate, I listened. Or should I say, I heard, but didn't really listen. I go through these hot and cold periods; sometimes, I am all about pushing Son to learn things, other times, I'm all about just being a mom. Just leave us be, I think. Just let me be a mom. I don't want to be thinking that Pez make a good OT exercise, or that we need to be doing sit ups right now. I just want to play for playing. But there comes a time where you realize the truth of the words - the only person who is going to stick up for your son is you. I've made decisions in the past that I wasn't sure about, and today feel that we may have gone down a different road had we made different decisions in the past, but I don't dwell on that. I believe I made the best decisions for that point in time, and perhaps, faced with the same decisions, I wouldn't be surprise if I chose the same way I did back then.
It's been two years since Son went to Kindergarten. For two years, we've put him on an hour long bus ride one way for him to get his public education. Every year at his CSE meeting, we revisited our desire to have him educated in our home district, in his home school, and every year I felt it wasn't right. First, it was because our school district was revamping the entire special ed department the year Son entered Kindergarten. I preferred to send him into a stable environment where I knew he would succeed. This year felt right, somehow, and it seemed that the stars were aligned.
Our family met with the Superintendent of our school system, who was an elementary school principal during a time when a boy with Down syndrome was fully included. That boy completed K-12 in our school district and is now aging out of the system. The Superintendent was very welcoming. He suggested we visit both our home school and a neighboring elementary school within the district that houses the self-contained classrooms. Once we visited both schools, we scheduled a followup CSE to discuss which school Son would go to. At least, that's what we thought we were going to discuss. I won't bore you with the details, but I wanted to share some of our experience at this meeting. The school side of the committee came into the meeting with their minds made up - there would be no place for Son within the school district next year. They based their decision on testing that was deemed unsatisfactory at our previous CSE. The person who headed the meeting quoted laws that I later learned did not pertain to Son. I was numb with shock. I never expected this sort of outcome. I remember hearing the words - we are not required to provide him a program. We're only required to make sure he is educated. - or something to that effect. I left that meeting devastated. When I came home and spent a day or two shell-shocked, pacing the house, I realized that my time had come. It was time to overcome the hurdle of confrontation, it was time to stop worrying about what other people think, it was time to push for what I felt was best for Son. It took a bit of self-coaching, but I picked up the phone and called the Superintendent. I asked if I had misunderstood the welcome I felt from him and the principals we had met on our visits, and I asked if he could help me answer my questions as to what happened at the meeting. Within two hours, the Superintendent had the assistant director of special ed in his office, and set the tasks to have Son transferred to our local elementary school into motion. Of the many things I have accomplished in the almost 7 years of parenthood, and thirty-something years of living this was one of the most rewarding moments of  my life. I am a Lionness, hear me Roar!

Wednesday, September 14, 2011

What a Difference a Day Makes...

Is it possible that a few days in a different environment can make a difference in your child? Son started Kindergarten (again) last week in a general education classroom with a special ed TA just for him. As I write this, I am struck, once again, at how incredible this is. And I feel compelled to jot down the changes that I've noticed in Son in just the last week.
Son has typically developing friends at school! Perhaps Son had friends in his previous school, but I didn't know who they were because we lived so far away, but I do know that Son interacts with his peers in a completely different way. Instead of playing on his own, or just with his sister, he now initiates contact with his peers. He did so before, but only with children that he knew well. Today, on the playground, I saw him playing in ways I hadn't before...standing with a group of boys, waiting to see what they would do next, climbing with them, running around with them. Of course, it's not all perfect; he zoned in on one kid and followed him around everywhere, chasing him, engaging him. That kid may have gotten a little sick of that...
The most mind blowing to me is that in this new environment, in this new school, with children he didn't know before, within the first days of school, Son is requesting to go to the bathroom. Any parent of a typically developing child may be shocked that this is mind blowing to me, but I am telling you that Son spent two years at his previous school having accidents and never requesting to use the bathroom. At home, accidents were a rare occurrence, but at school - pretty common. So it is mind blowing to see this change in behavior, and continues to lend support to my theory that Son was unhappy at his previous school. And I am grateful beyond grateful to know that Son is part of the North Shore school district. They have been amazing so far, and I see Son going far here. He is already leaping forward from where he was.

Tuesday, June 7, 2011

Carnival Fun!

Note: this post was written on May 20.

Baby's schedule was unusually late yesterday, and in celebration of him not having to be in bed at 7, I wanted to go out to dinner. It's so much fun to be able to go out without worrying that Baby's up past his bedtime, or that he may have a meltdown. So into the car we piled, and for once, the destination was my choice. On the way, though, Husband all of a sudden said, I know where we're going! Dread filled me. Great. I guess I should explain. My husband is the King of Buffets. He always wants to get the most food for his money, and if he can have a sampling of a variety of foods, he's most happy, so I wasn't too excited to hear where he wanted to take us. But I was in for a pleasant surprise! The St. Boniface Feast by the Shore opened last night.We ate hamburgers, the kids had hot dogs, and we bought them all inclusive bracelets, so they got unlimited rides. It was great! We were completely unprepared - no stroller for Baby, no sweaters for the approaching evening cool, and most importantly, no camera. After dinner, I drove home and collected sweatshirts, the stroller, and of course, the camera. The kids ran from ride to ride. Amazingly, they even rode the ferris wheel by themselves without tears! Admittedly, it was a little hard to watch Son lagging behind because he doesn't run as fast, and it was tough watching him sit by himself on the rides, because Daughter and their friend got on the rides first and found seats next to each other. I know it wasn't done intentionally, and I look at this way. He is old enough to sit by himself, and he was excited about it. And it is such a fortunate thing to watch him participating. He was running, he was laughing, he was having a great time!
Running to the next best thing :)

Teacup Ride!

Airplane Ride

But I also see it as an opportunity for me to teach Daughter that she always has to watch out for her older brother. On a daily basis she totally knows that, but when she's as excited as he is, it's understandable for her to forget. Not to mention that she's only four years old, and what four year old is so empathetic as to be aware in those excitable moments?
Anyway, another interesting observation, besides all the fun we had, were the volunteers of the festival that came to talk with us. It was Thursday night, the volunteers were still fresh, and it was pretty quiet at the carnival, but I believe that Son brought the attention. People just gravitate to him. He makes people smile, and that is a wonderful thing to see.

Thursday, May 19, 2011

Silence, Clothes and Pez

Silence is golden. That is what always runs through my mind when I am alone in the house (which rarely, rarely happens) or when Daughter and Baby nap at the same time (which also rarely happens). I sit here, tea in hand, and listen to the silence. I can hear the birds singing, and my fingers clicking on the keyboard.'s all relative, I guess.
These days, I'm up to my neck in kid's clothes. I've probably written about this before, but I'm going to write about it again. I hate the clothes swap - summer to winter, winter to summer, swapping smaller clothes for bigger clothes. But it must be done. Not to mention the stuff to give away. No more babies in this house after Baby. No more little girls after Daughter. At first, seeing the clothes made me emotional, knowing that none of my kids will wear those clothes again, but at this point, I just want them out. However, I am attached to them enough that I can't just dump them into the good will box. I feel the need to give them to someone I know. So they sit, in their own area, waiting. I just hope they don't have to wait too long...
Son has been improving in his fine motor skills! Although I've seen him color for longer periods than I've ever seen him color before (of course, only when it's Toy Story coloring pages, but still), it didn't hit me until I gave him a Pez dispenser filled with candy. I was sure he wouldn't be able to get the candy out himself, so I sat ready to respond to his request to help him. Instead, I watched, with my mouth agape - (interersting - two definitions to this word. one noun, one adj/verb. different pronunciations, same spelling. Cool) - okay, I'm back from my nerd world - as Son opened, tugged and ate his way to the bottom of the candy stack! The only help he wanted from me was to refill the thing! Yay! And that's when I have to love having a child with a disability. Just as they told me when he was born, it's those little moments that become big moments for me. And it's not just for Son, because if I get the chance, if I happen to notice the fast changes in the others, those little milestones are celebrated for Daughter and Baby as well. Thanks to Son, we are so much more aware of the Bigness of everyday miracles of putting on your socks. Or getting Pez candy out of its holder.

Wednesday, April 13, 2011

Wednesday Ramblings

Does anyone else get the feeling that they are suddenly thinner the minute they start a diet? After one day on Weight Watchers, I always feel like my eyes are huge, and that there is no longer a double if it's possible to drop 10 lbs just by thinking about losing weight! Although, for the record, I do believe my husband is able to do just that. He says to me - oh, I think I want to lose some weight, and within three days has dropped at least 5 pounds. What is up with that, people?!
Tomorrow is Daughter's first day of ballet class. A rite of passage for our little girl. She called to me after her bath, and standing halfway down the staircase asked me - what are we going to do in ballet? What else? and what else? I've been preparing her for the disappointment that ballet class will not be an Ella Bella story with a magical music box, but I'm not sure it's sunk in yet.
I remember when I took ballet. My most vivid memory (and only memory) is of my cousin and I getting kicked out of ballet class because we were not behaved enough. Little did the teacher know that my cousin's neighbor would get us riled up, then sit back and let us be disciplined. In any case, it wasn't meant to be, because my butt is too big anyway.

Tuesday, April 12, 2011

Weighing In...Weighing the Options

Six months after Baby was born, I am back on Weight Watchers. My intention was to go back earlier, but, simply put, the coffee cake was just too good. Then last Friday, I walked by the full length mirror and caught a glimpse of myself. I kept walking, sat down at the computer and signed up for Weight Watchers online.
I am firm groupie of Weight Watchers. I have been on Weight Watchers (how many times can I use those two words in this post?) on and off for the last 10 years or more. I am a believe in the system, but do I follow it? No. This time, I will succeed, because in addition to it being 10 years that I have loved Weight Watchers, it our 10 year wedding anniversary this July. And I don't want to be walking by the full length mirror disappointed!
On another note, I am excited/scared/overwhelmed to say that Son may be going to the local school in our district, after attending an elementary school 40 minutes from home. Today, we went to look at the school and met with the principal. She was so warm, and expressed such interest in having Son attend her school. I was comforted in seeing such acceptance of him as a child needing to be educated. My fears are not in the education of Son, but more of a fear that removing him from the homogeneous class of Down syndrome students will later be a disservice to him when he may seek friendships within his own. Children do gravitate to those most like themselves. I think. But he can learn so much from diversity. Oh, the age old question: how do I know I am pushing for the right things?

Friday, April 8, 2011

A Royal Tea Party

This year, Daughter was so into her birthday that I couldn't not do anything smashing, so here goes...She loves the book Annie and Snowball and The Teacup Club and she also loves to be a princess, so what better combination could there be than a Royal Tea Party...come dressed as a knight, a king, a princess or a queen. And come they did!

To decorate their own crowns and partake in finger licking little weiners, pizza bagels, and of course, tea and cake! Most memorable was having a little boy (age 6) come up to me and say - can you fix my crown and make it like a real king? Apparently, kings wear their crowns high up on their heads and don't let them fall to the middle of the forehead...

Friday, March 25, 2011

Moving On

Our attic is a mess. It runs the whole length of the house, and literally half of it is full of clothes that is either too small or too big. Seasonal clothes. Shoes. Bins and bins of them. Baby clothes is organized by size and sex. You can see our evolution from plastic bins to plastic bags that are more "smooshable." Is there a better word for this? Probably. But I can't think of one right now.
When Baby was born, the order of the bins became chaos as we tried to fish out the right sizes for the right sex.
Having our third child, I was excited to be able to give the "other sex" clothes away, and restore order to the "clothes monster." As it turned out, the girl clothes, since we had a boy. I've been planning this for months. A number of my friends were pregnant, and I was waiting for one of them to have a girl, but they all had boys, so I decided to start giving the boy clothes away as Baby started growing out of them.
Tonight, the first batch went, and although I had been so excited to do this, emotions came whirling at me. A wave of nostalgia came over me as I went through one of the girl bins last week, looking for white onesies. I would never have a baby girl again. Their time in our family is finished. And the girl clothes are just so cute! The clothes that went tonight, Baby was wearing just a few weeks ago. As I sorted the clothes into two piles, each for a friend, I thought of my first born, who wore these clothes six years ago. How can I put into words the sentiments that the clothes evoked? The milestones that our first born hit while wearing them.  Our favorite outfits. The laughter and the tears that came with having him enter our life. As I was carrying the bags down the stairs, I said to my husband, "Here's the first batch of Son and Baby's clothes to go, and you probably don't want to know which ones." He said, "Maybe there are some we want to the cute Peter Rabbit ones...." You don't want to know, I replied, and off I went. I was proud of myself for holding to the task at hand, but when my friend asked me if I want the clothes back when her son has grown out of them, I said, "No, I don't think so..." and later, "Can I think about it, and let you know?"

Tuesday, March 22, 2011

Unexpected Joy

A look. One look can bring you up, or bring you down. I woke up *mad* today because my 4 month old woke up before 6 am and would not go back to sleep. I hate getting up before 7 am. I hate getting up at 7 am too, but that's pretty much when the other kids get up, so my day has to start.
Growl, growl. I growled at everyone this morning, especially my 4 year old. The house is a wreck. What else is new, but it was more so because last night we made жаворонки (zhavoronki) in honor of the 40 martyrs.

This morning, the plan was to deliver some zhavoronki to some members of our parish. The house was beckoning me: clean me, clean me! My four year old was whining: read to me, read to me! and the baby wasn't napping according to plan. Of course. I did the dishes. I read to child. I picked up baby. We got in the car. In the back of my mind I'm thinking, is this worth it? Why am I doing this. I have 3 kids to tend to, I have a dirty house, I need to be cooking. The answer came to me at the third stop. Although I called some people to warn them of our arrival, I hadn't called here. We knocked on the door, and daughter handed over the bag.
-"What is this?"
-"We made zhavoronki for you."
And there it was. The look. The look that brought me up, the look that made it all worthwhile. We had brought joy into someone's life. Unexpected joy. For them, and for me. My heart soared, and I thanked God for hearing my prayer to see us through this good deed. That's when I realized that this wasn't just about us. It wasn't about going home feeling good about ourselves for handing out our baked goods. Our good deed actually touched people. Bringing joy into someone's life today made our life a little easier somehow. Daughter seemed happier to play independently as I cleaned the house. I was able to cook and clean. Baby still didn't cooperate, but hey. You can't have it all, can you?