Monday, March 29, 2010

Knitting for Two: Baby Gifts for Twins

Doug's cousin is due in May with identical twin girls, so I knit up some baby gifts for them. I really love making these little gnomes!

I had plenty of yarn leftover so I made matching newborn size hats for the babies too. These were made using an inexpensive cotton yarn, so it will be easy for the new, busy momma to wash. I can't wait to see them on the babies!

I modeled a hat on one of Ella's baby dolls and boy was she mad that I didn't let her keep the hat for her baby! Looks like I might have to make a doll hat next.

Saturday Salads: Spinach, Strawberries & Goat Cheese

I took the kids out of town for part of spring break last week to visit my family, so my Saturday Salad post was actually Sunday dinner and I am just now making time to post it. :) It's not terribly unique, but was very good!

Spinach, Strawberries & Goat Cheese

1 box of Organic Baby Spinach, tear big leaves up a bit
1/2 a quart of fresh ripe strawberries, sliced
1/2 a red onion, sliced into thin rings
1 package Alouette Goat Cheese crumbles
Kraft Light Raspberry Vinegarette Dressing (leftover from previous salad night)

Loosely tossed together and served with a grilled chicken breast half.

If I would of had some pecan halves, I would of added those. I also thought this combo might be nice with a Poppy Seed Dressing, but Doug voted for the vinegarette.

Monday, March 22, 2010

Welcome back, Spring!

Yesterday, we had planned to attend a World Down Syndrome Day event at the Sedgwick County Zoo that was organized by the Down Syndrome Society of Wichita. Of course, it snowed Friday & Saturday so the event got postponed. Instead we spent the day going to church, taking the kids to eat at Braums, then hanging out at home the rest of the day. It was a nice day together, but not the same as a trip to the zoo. :)

Today, it is gloriously nice out and we can hardly believe there was snow on the ground just a day ago! The kids and I have spent the afternoon outside playing in the yard. I definitely need more days like today! The boys are on spring break this week and I am planning on taking them up to visit my parents, sister and nephews for a few days. Hopefully the weather stays nice and we can enjoy some outdoor time up there.

"Danger! Look Out, Wild Kids"

Mini-trampoline bouncing

Having popcorn in the "Snack Shack"

Saturday, March 20, 2010

World Down Syndrome Day, 2010

It's March 21st again and that means it's time to recognize World Down Syndrome Day. When this annual event was founded a few years ago, it was a day I looked forward to with a sense of pride and happiness. I thought, "How cool, March 21st- what great day to celebrate and build awareness for our loved ones with Down syndrome!" The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome, hence 3rd month of the year and 21st day of the month. I had fun finding a special way to mark the occasion.

Last year, I was a little less enthusiastic about it because I was feeling disappointed in society at the time. President Obama had made his blunder about bowling and the Special Olympics. Tropic Thunder had been given Oscar nominations. I felt like society had a lot of learning to do about respecting the differently-abled and I wasn't sure anything I did could make a difference.

To be honest, this year I am feeling even more disappointed in society. In fact, I feel downright RUN OVER by the world outside of my home. I feel like my child is so raw, naked and vulnerable to mean spirited people who find joy in the verbal and physical cruelty they inflict on people with Down syndrome. It's completely affected my reaction to how I communicate online. I haven't wanted to blog much, I've considered changing my blog from public to private, I restricted access to my Facebook photos, I'm even more sensitive to people misusing the R-word.

Why, people? Why does this have to happen? Why is it so amusing to you to make a face and say "Look at me," I have Down syndrome. Yeah, that's funny.

I'm angry. I'm angry that I feel this way. I'm angry that attitudes like that put my child's life and well-being at risk. I'm angry that more people are not angry that insensitive people like this are hurting innocent people like my son. I'm angry that I can't share the ups & downs of his life without worrying that some jerk is going to take my photos and use them to laugh at my son.

And it makes me sad and scared, too. I'm scared to death to have him in school, unable to defend himself. Unable to understand when someone is being mean to him. Unable to tell me when he's been hurt by others.

I'm doing all I can to help him. To protect him. To educate anyone who will listen to me. I'm told "it's too much, Deborah" "You're taking it too seriously, Deborah." "She didn't mean it that way." "Don't let it get to you! If you do, that means the bullies win."

I don't know what the answer is. I don't know how to make a difference, how to change the world. I don't know if I still believe I can.

All I know is that I hurt where I only want to love. I want to push that anger and those fears away and wrap myself and my family up in a cozy blanket of security and comfort.

I just want us to live together, with respect, understanding, empathy, and peace. Give me this one day to believe that it can happen. Can we all try to 'Aim High Enough' today?

*Edited this morning, to share a beautiful message created by an advocate I adore. This brought tears to my eyes this morning because the music says it all. Look for our smiling boy, 2 minutes 4 seconds in.

Saturday, March 13, 2010

Saturday Salads: Pear, Feta, Radish Salad

I made this salad for Sean's Teacher Appreciation lunch this week and they asked for the recipe. So I thought, hey, maybe that can be a blog post or even series idea. I LOVE salads and often make ones we like then forget later what I put in them. Hopefully this will help me remember them. :)

Pear, Feta, Radish Salad

1 box Organic Baby Romaine Lettuce
1 ripe fresh pear, chopped
4 radishes, sliced
1 pkg crumbled traditional feta cheese
handful sliced honey-baked almonds
Kraft Light Raspberry Vinegarette Dressing

Combine and toss. Makes enough for 2 as a main dish or several as a side (I add more radish and pear if it's for more than 2.)

Thursday, March 11, 2010

Preparing for Kindergarten Transition, Phase 2: The Evaluation Report

Deep breath....

This evening Doug and I went to our Parent-Teacher Meeting at Sean's school. The school has volunteers do childcare in the gym so both parents can attend the meeting, thank goodness because it turned into a much longer meeting than I expected. The kids were happy and excited to play together in the gym. Doug and I headed towards Sean's classroom, where we usually had meetings, only to be re-directed to the conference room instead. Awaiting us was Sean's teacher, the school's physical therapist, speech therapist and occupational therapist. New to us was the district psychologist that I had talked to on the phone once before about the ABAS form. Usually, we only get this kind of gathering when we have IEP meetings.

Tonight they gathered to tell us about the various cognitive and behavioral testing they'd been doing with Sean over the past month. This wasn't a typical sit-down-and-look-at-art-projects meeting. Butterflies swarmed in my tummy as each person went around the room and told us how they think Sean is developing.

Thankfully, they are all very kind people, with wonderful, gentle personalities and truly love their jobs. That made hearing things that I guess I maybe wasn't ready to hear easier. Don't get me wrong, I knew it was coming, I knew we were going to go over the testing... but... the NUMBERS. The numbers get to you even though you know they are probably right. There really wasn't too many things I felt I needed to say, "Huh? Sean can do that. You must of caught him on a bad day." In fact, they all had many positive things to say about Sean's progress. For Sean, he is making progress and IT'S GOOD.

Compared to other children his age without disabilities... eye yi yi. Not in the same ballpark. Miles and miles away from the same ballpark. And miles.

I guess I felt a bit naive. He's not our first child, surely I should remember what typical 5 year olds are like? And seeing Ella just zoom right thru babyhood, making giant steps towards preschooler-ish behavior sure is bridging the gap between Sean's cognitive age and hers. I mean, for Pete's sake, she's just 19 months old and can jump, clearing both feet off the ground a good 4". Sean just started jumping last summer. Um, yeah, hello? Light bulb?

These numbers. Harsh.

Sitting here, re-reading the report, seeing "Chronological age=65 months" and seeing the oldest developmental age listed is 46 months (that works out to be roughly a 3 year, 8 month old child) for a skill area defined as "Personal Responsibility." Personal Responsibility, that's stuff like taking his dishes to the sink, throwing away a tissue, washing his hands. They said he marked high in that area because he is potty trained. All other areas he ranked under 39 months (3 years, 3 months). Language was his weakest area, not surprisingly, he is developmentally around 2 years old.

Sucks in air.

I'm supposed to send my almost 6 year old child to Kindergarten when he can only communicate like a 2 year old?

Hold my hand. Squeeze tight.

It's very overwhelming.

And you know what? Since I can't possibly begin to fathom what it is like for a child of Sean's abilities to be in that environment, you know what I asked about? Something so NOT important, I am sure. I asked how Sean will be able to manage the school uniform requirements of tucking in his shirt and wearing a belt. Sean's never worn a belt, neither had Aidan until his first day of school. We taught Aidan how to buckle his belt in a few days. Within a couple of weeks he'd gotten the hang of tucking in his shirt. I'm worried that it will make Sean's potty independence difficult if he has to struggle with a belt or ask for help every time.

Silly, I'm sure.

I was reassured that the school would not hold the uniform issues against Sean and that they'd work something out.

We talked at length about Sean's food issues and our worry about how it will affect his lunch at school. Those questions will be worked out in detail at the IEP meeting (to be held in April) once the elementary school staff can be involved. Doug and I actually wondered today if one of us would have to go to school every day to feed Sean. I doubt that will be the solution, but that does show you how much we have been worrying about it.

So that's that. We heard the numbers. We have the results written in black and white. Our son now has the official diagnosis of Mental Retardation.

He's still Sean. Those numbers haven't changed him. He's still the witty, silly, lovable, stubborn, consistent, loud, trouble-seeking little boy we know. He's ready for Kindergarten and we will be too.

*I'm throwing in photos of Sean, busy being a kid living life to the fullest, in this post not to throw off your reading rhythm, but as a reminder. A reminder that the piece of paper may say one thing, but the spirit of the child says another. My child is full of spirit, he's fun to be with, he's capable of learning new things. This is just the beginning.*

Sunday, March 7, 2010

Life as a 7.5 year old Boy

Lately I have been thinking about all the fun things Aidan says and does that just excite us. Watching his mind explore different thoughts and learn new concepts is so fun. I can't say enough how pleased I am with his public school education, we feel very blessed to have found a great school for him. Doug and I try to go over concepts they are learning in school at home and also to talk about things we think interest him. Sometimes it is hard to get to really talk with Aidan about things, because he has his active siblings vying for attention as well. We often find we get the most out of our little one-on-one errands we do with him. I thought I'd jot a few recent conversations down that made us smile.

1. Doug and Aidan went for a drive to check out some videos one afternoon. Aidan mentioned to Doug that several houses had recycling bins like ours. "They must care about the environment, too!"

Then, "That house doesn't have one. They are SHELLfish."

LOL, Doug proceeded to tell him about the difference between the words shellfish and selfish and their spellings.

2. I was making scalloped potatoes for dinner one night and in a hurry to get it in the oven because it takes a long time to bake. The phone rang, I answered it and it was someone wanting to do a survey so I hung up. Went back to preparing the dish. Phone rings again, I told the kids, "Don't answer! I can't talk right now so I am going to let the machine pick up."

Aidan walks into the kitchen, talking on the phone, "Sorry. Mommy can't talk right now. She's cutting the cheese."! I started laughing so hard I almost cut my finger! I quickly washed my hands and took the phone, relieved that it was my mom on the phone and not anyone else! I think she was also laughing so hard she had tears coming down her face.

3.This one did not make us smile, but did illustrate what a kind-hearted boy we have. Doug picks Aidan up from school every day and one afternoon a girl in Aidan's class stopped Doug to tattle on Aidan. She claimed he had called her a name at recess. She said, "Aidan called me retarded today!" Doug looked at Aidan then looked back at the girl (who has a history of rubbing Aidan the wrong way) and told her, "I'm quite sure he did NOT say that to you. That is not a word we use in our home."

Aidan added, "See! I told you, J! I don't even know what reTARTed means!"

Doug told her that we do not like that word, it is a very hurtful thing to say. She seemed sullen that he didn't fall for her story.

This happened right before our parent-teacher conference, so we did bring it up with his teacher and ask that she help with that relationship.

4. Aidan got the idea that we need to have one more baby, another sister so we can have two of each. I told him that God doesn't let moms & dads pick if they have a boy or girl, He gets to decide for us. I said if we adopted a child that didn't have a mom or dad then we could pick. I said we could even pick how old they are, what they look like, and could even find a sister that has Down syndrome like Sean.

He determined, "I want a sister with blond hair in pigtails, blue eyes, and light skin like me."

I assured him that as nice as that sounded, we are content to stay a family of five.

5. Aidan has been reminiscing about preschool. He has asked if he can go to school with Sean for a day. "Sean's school is more fun. You get to play in the ball pit (sensory therapy room), go to P.Mooney (speech therapy session) and paint with cool things (fine motor therapy). First grade is tough."

I've been talking to hm about Sean starting kindergarten at his school. He's excited to walk Sean to his classroom in the morning and wait outside with him for Daddy after school. He questioned me, "What are you and Ella going to do when we are at school all day? Just stay home and be bored."

Yep, the boring life of a mom!

Wednesday, March 3, 2010

Our New Family Members

Several months ago, a friend was decluttering and offered us a small fish tank. I thought the kids would enjoy having fish, so I took it. And it's sat empty on our buffet for the past several, several months. Finally, this Sunday we decided to get a little fish family for our tank. I set it up on Friday so the water could cycle though the filter and be ready for fish.

We looked around the pet store and decided on goldfish. They come in lots of colors and like cold water so we wouldn't need a heater. Each of us picked out one fish and we brought them home.

We named most of them after characters in the Monster House movie, since it's a current favorite. Aidan named his fish Lance Vance because he is small and speedy.

Sean was very excited to take a photo of his fish to show his classmates on Monday morning. He said and signed, "Sean fish! Fish swim. Fish eat. Fish POOP!" See? They are providing pet therapy already.

We quickly realized we'd bought too many fish for such a small tank (my guess is that it's a 5 gallon tank.) I looked at goldfish care websites and read that they need a much larger space. The smallest estimate was 2-3 gallons per inch of fish. Therefore, for five fish we'd need a minimum of a 10 gallon tank.

I went out and bought another tank last night, with the intention of moving some of the fish into the bigger tank and leaving some in the smaller tank.

Sadly, one of the fish was discovered belly up this morning. Hopefully we won't lose anymore before the new tank is ready.

RIP Jenny!