Saturday, October 30, 2010

31 for 30

A few of my friends have been talking the last couple of days about how their children with Down syndrome has a sixth sense.

C could probably qualify as having a sixth sense.  When he was younger, he'd give everyone hugs (and kisses--which are VERY wet).  A few years ago, probably when he was in kindergarten. He stopped hugging everyone.  That was partly because of his interpreter, she would encourage him to shake hands instead.  But now, C is very picky about who he hugs.

One summer day, about 2 years ago.  We were at a t-ball game.  C left the game and went to sit next to a lady who was sitting in the stands.  By the time I got to him, she was in tears.  She told me that C had come up to her and given her a great, big hug and then sat down next her.  She said that she had been having a very bad day and that she needed a hug.

So, if you get a hug from C, you are extremely lucky.:)

Friday, October 29, 2010

31 for 29

Well, considering this is the first year I've done the 31 for 21 posts, I guess I've done pretty good.  Maybe next year I'll do better.

Last weekend, we (DH, C, Raine and I) went back to Oceanside to be recertified for public access.  We passed!!!  We drove down Thursday.  Had a workshop on Friday.  Then drove back on Saturday. 

One of the first things C signed when we got there, was Nanny's S's name sign.  He kept asking for her.  Her boyfriend (is he a boyfriend yet?) has some competition there.:)

One the way home, we brought a dog back who was being released from CCI's program and being place as a pet.  She was raised as a puppy by my sister (my sister is the one who "introduced" us to CCI) and was actually being place with a friend of mine.  Because "S" was a pet dog, we let C hold her leash a bit when we took potty breaks.  We were still trying to get C to hold Raine's vest handle, which he doesn't really want to do.  He wants to be in control of the dog, not us.  He really liked holding "S's" leash and was a little upset when we left her at her new home.

This past week, one day, I put a different leash on Raine's flat collar (our leashes are blue and C is not supposed to hold it) and gave the leash to C.  He had a ball leading Raine around the house and giving her "commands."

He would take her up to a light switch and say "pu."  The first time, Raine just looked at him like "what do you want me to do?"  Then I'd hear "BA"  (That's my name.:) )  So I went over and told Raine:  "Push."  She got up on her hind legs and pushed the light switch.  C praised her and then, for about 5 minutes, walked her around the house, opening drawers or cupboards and telling Raine to "pu" and she'd push the drawer or door shut.  C has said "pu" before (when we're pushing him on a swing), but it's nice to know that he hasn't "lost" that word.

I think I'll put that leash on Raine more often this week.  This leash, we can actually put on Raine's vest, maybe C will hold this leash out in public better than the harness.

Wednesday, October 13, 2010

31 for 13

I know...I have been skipping days in the 31 for 21 posts.  I wanted to post this yesterday, but it wasn't ready.

Yesterday was Renee's funeral. 

One of my friends ordered tulips for us to send to Renee's family.

When one of our children dies, or sometimes we have lost one of our "sisters," we send tulips.    We do this because of  an essay that was written a number of years ago.  This essay has been passed around among people who have a loved one with special needs.  Today I'm going to share this essay with my readers.

(If this is too small to read, click on the picture.  It will open it in a new window and then you can zoom in to read it.)

Monday, October 11, 2010

Sunday, October 10, 2010

31 for 10

This is a picture from a year ago.  If you look closly enough, C is looking at a caterpillar on his hand.

Saturday, October 9, 2010

Renee...You will be greatly missed.

I am sorry to have to report, that Renee died early yesterday morning.

Renee was a sweet little girl, who fight long and hard against the cystic fibrosis. One of the things she really enjoyed doing (and she did it well) was swimming. Her mom was always so proud of her accomplishments. She will be greatly missed by many people. My thoughts and prayers continue to go out for Renee's parents and brother during this time. I love you Geo.

When C was about a year old, I found a support group of moms with children with DS. This group started on ivillage and has broken off to other support groups of the years. But many of us still keep in touch with each through Facebook and the T21 groups. So Renee's death has affected a great number of people.

One of my friends posted on her blog yesterday about the closeness of us women. I could never say it as well as she has so I am going to post a link to her blog instead.

For My T21 Sisters

Some of these women I have met in real life, but most I have not. But, I do feel very close to them and when one is hurting, I hurt for them.

Thursday, October 7, 2010

Please pray for Renee...

Renee is a little 10 year old girl.  She has Down syndrome and Cystic Fibrosis.  Renee is one sick little girl and needs your thoughts and prayers badly.  She's been in the hospital for most of the last two months.  It started with an infection in her lungs.  They ended up needing to place a feeding tube.  Now she has been intubated and is on 100% oxygen.

Her mother, Georgianna, on her FB page, says:  "We are running out of options, Renee is doing very poorly. Please continue all the prayers you can for her."

Please pray for Renee, her parents and her sweet big brother.

Wednesday, October 6, 2010


When C was about 18 months old, he suddenly become deathly afraid of the water. He hated baths and showers. I signed him up in the mom & tot class. The first year we sat on the side of the pool. He wouldn't even touch the water. (The pool's water started out at an inch and then slowly got deeper.) C really liked to watch the divers and other swimmers but he would not get in the pool. The next year he would finally get in the water, but it couldn't go past his ankles.

Each summer, I would sign the kids up for lesson. They would take lessons all summer long. And each year C progressed a bit more in feeling comfortable in the water. Of course, since we didn't do swimming in the winter, it would take C half of the summer to catch up to where he was at the end of the summer before. We finally got to the point where he enjoyed baths again. And C slowly got to the point where he would allow the water to get to his knees, then his waist, and finally he is up to his chest.

Last summer, C actually swam. So that is my picture for today.

C is telling us to "watch" him. That is why he keeps waving his finger.:)

And of course, this picture says it all!!!

Tuesday, October 5, 2010

October is Down syndrome Awareness Month

Some of my blog friends do a post each day during the month of October.  They call it 31 for 21.  I'm not a very eloquent writer.  So I won't be writing something each day. Instead, in honor of C and all others with Down syndrome, I'm either going to post a picture each day of C or post a poem or saying that is dear to my heart. 

Of course, since I didn't think about this until yesterday, I won't be doing 31 posts.  But I'll do as many as I can.:)

This picture is from C's surgery last Friday.

Sunday, October 3, 2010

Definition of a broken record:

This was a conversation that I had with M this morning (who is 3 turning 9, she says).

"Mom, can I wear my new dress?"

"No, M."

"Mom, can I wear my new church dress?"

No, M."

"Mom, can I wear my new dress that you bought me?"

"No, M."

"Mom, can I wear my new church dress.  The one you bought me?"

"No, M."

I swear, this went on for at least 10 or 15 minutes.  I'm sure she thought I didn't know which dress she was talking about.  By the end of the conversation, I was laughing so hard, I couldn't answer her.

So, what is a definition of a broken record?  A three year old who won't take no for an answer!!!

****Disclaimer:  The reason M could not wear her new dress (she actually has three new ones I bought at Deseret Industries for less than $10 total--so cute) was because we weren't attending church today.  Instead we watched General Conference on television.  Instead, she had to wear a play dress.  Next week she'll get to wear one of the new dresses.

October update!

I can't believe that it's been a month since I last posted.  I keep thinking about posting, then get busy doing other things and then I forget!!!

We finished up our canning fruit.  This year I did peach jam, bottled pears and peaches, and made salsa.  Salsa was a first time for me.  My sisters and I did the salsa together one Friday.  It was fun!  I think we are planning on doing salsa again next year.  Hopefully my garden boxes will be in place next year so I can plant tomatoes and do pizza and spaghetti sauce also!!!

The primary children had their program last Sunday.  That is one reason I have been so busy since I get to write program (with the help of the children) and organize the practices, etc.  I'm so glad it's over!  The kids did great!!  We teach them a song in ASL each year.  I always hope that C will start signing along with them.  This year he did sign more during the practicing.  But he was being stubborn the day of and wouldn't even stand up when the other kids did for the songs.  But he did say his part.

The song the kids leaned in ASL this year was "I Know That My Savior Loves Me."  It's a beautiful song--both sung and signed.

We are trying to get back into a decent schedule for homeschooling.  We tend to start later than I want to in the morning and end up working until 4:30 in the afternoon on our school work. 

K started orchestra last week.  She wanted to take orchestra at the junior high this year.  But we found out that she needed at least a year of either private lessons or orchestra at the elementary school.  So, we compromised and K is taking orchestra at the elementary school.  Next year, she'll be able to enroll in orchestra at the junior high.  She'll probably take a couple of other classes also.  She is keeping busy with skating also and is really enjoying it.

C is progressing in his math!!!  It's so nice when he understands a concept.  We started over in Saxon Kindergarten and he is whizzing through most of the book.   C is still struggling with shape names.  But he likes to look for different shapes around the house when we talk about the shapes.

C hasn't been able to wear his hearing aids for a while because he's had an ear infection.  Friday he had surgery.  He had tubes put in both ears.  He also had tubes placed in his tear ducts.  His eyes are always watery and he is constantly rubbing them.  We brought Raine with us to the hospital.   She was with us in the waiting room, etc.  The anesthesiologist was very impressed when Raine opened the door to the operating rooms. 

Raine, of course, couldn't go back to the operating room.  We had brought a lap top and had turned on "Cars."  So the anesthesiologist took the laptop back with him.  That worked well, since later a nurse said C didn't even notice when they put the mask on him and he fell right to sleep without any fighting.

DH took Raine when he had to run home, so she was not in the recovery room right after the surgery.  C was very agitated, hitting the nurses and trying to rub his eyes (he wasn't supposed to).  All he wanted was his dad, and kept signing for him.  DH made it back in time when they transferred us out of recovery so Raine was there.  Caleb got to have her up on the bed with him and between her and "Cars" he was a lot calmer.

N and J are working hard on their reading and math.  This year they are doing Zoology 3 .  They are excited about the experiments.

M is constantly asking, "Can I do my preschool box?"  She is also doing a few workbooks to start practicing tracing.  She is right there during school time listening and soaking everything in.