Success!

Success! I was able to complete the 31 for 21 challenge this year. (I know, I did cheat a few times with photos.) It has been a great experience to get back into the swing of blogging again.

Today was busy. Dad, Ruby and I got up early to drive up to Lawrence for the 5A/6A State Cross Country meet. What a beautiful day for a run! Richard posted a personal best time on a very challenging course.

We got home just in time to get dressed for Halloween and do a quick pumpkin carve. Here is my little pirate longing to go outside. Please ignore the smudgy window. Between Ralph and the dog, I give up!

Going to find the other kids.

Oops, forgot my treat bag!

My handsome boy! I can't believe how much he has grown in just a year.

Ralph with his "crew."

Ralph had his first trick-or-treating experience tonight. He LOVED it. He started banging on the door for the whole group. He did one of his Ralphie screams instead of yelling trick-or-treat. Then after holding his bag open for the candy to be dropped in,  he helped close the door at each house! 

A friend commented that he seemed to enjoy the experience more than other typical two-year olds. I agree. He's not a bit shy and he totally "gets" the whole thing. Great job Ralphie!

Happy Halloween and Happy Down Syndrome Awareness Month! 

21 Things about Ralph

I've cheated on blogging for the past few days with photos! I thought I should actually write something today so here it is. (I totally ripped this idea off from http://theheflinfamily.blogspot.com/)

21 Things about Ralph

1. Ralph goes to bed very nicely. He sleeps all night-he always has!

2. Ralph has super narrow flat feet. They roll in when he stands or walks, so he wears SureSteps-AFO's.

3. Ralph loves to look at himself in the mirror and brush his hair. 

4. Ralph knows lots of sign language. He tries to fingerspell sometimes and it cracks me up!

5. Ralph doesn't talk much, yet. He tries, though. When he says his brother Chipper's name it sounds like he's trying to hock up a loogie. He does it the same way every time!

6. Ralph loves to drink. Water, milk, juice, it doesn't matter! If he is yelling or screaming, chances are he wants a drink.

7. Ralph loves to watch Signing Time videos. He will ask for them by signing "signing" "time!" He doesn't care that much about any other childrens' show.

8. Ralph had a hole in his heart. It was repaired with an AMPLATZER® Septal Occluder. He went home the next day. I'm still amazed.

9. Ralph has not been hospitalized at all in 2009! (I wouldn't say anything if I believed in jinxing!)

10. Ralph loves to eat macaroni and cheese above all else. It the one thing I can count on.

11. Ralph loves his daddy. I mean he weely, weely wubs his daddy!! He throws his little arms around daddy's legs when he comes home from out of town.

12. Ralph loves to close doors. Doors must be closed. He likes to make sure that he is on the wrong side first.

13. Ralph likes to play in the cabinets and rearrange my canned goods. He likes to stack up jars of baby food. 

14. Speaking of baby food, Ralph loves to eat it. He has rediscovered baby food now that I'm starting Ruby on fruits and veggies. 

15. Speaking of Ruby, Ralph adores his baby sister. He loves to hug and kiss her and sit on her, too! Gotta keep an eye on him.

16. Ralph loves people. He has what I call gravity. He attracts people with his cute and friendly ways.

17. Ralph is tough. He hardly ever cries when he falls down. 

18. When Ralph does cry, it is so pitiful that I just melt.

19. Ralph likes to "GO." (Picture him pointing with both fingers) He often packs a bag, grabs a purse and gets his baby strapped into the carseat!

20. Ralph has trashed more than one computer keyboard in the past. Nowadays, he is more likely to grab the mouse and run away or start clicking it, or BOTH!

21. Ralph is an amazing gift from God! We are blessed to be his family.

Found on my camera.

I found these photos on the camera when I downloaded them Tuesday night after the women's dinner. Only daddy would let her fall asleep like that! 

Pretty cute. I wonder where I was that night? I never go anywhere but the grocery store!

  

Wordless Wednesday

My big project

Now that it is done it doesn't look so big! In honor of Down Syndrome Awareness Month I decorated a table for my church's Fall friendship dinner! This is probably the most fun ladies event at my church. 

The theme of my table was celebrating and protecting children with Down Syndrome all around the world. My my colors were blue and yellow with a globe for a centerpiece.


I tied blue and yellow bows on each goblet. I had a slide show of Reece's Rainbow children playing in my digital picture frame. The Gifts book was available for my guests to browse through.

Here is a wide shot of the room. There were so many beautiful tables.

I was very nervous, because I've never done this before. I don't have a lot of beautiful dishes and table accessories. I borrowed the tablecloth and coffee cups from the church kitchen.

I made little table tents with RR children from different countries. The tent held a mini flag of that country. On the back of the tent I listed the adoption program requirements for each of the eight countries that I chose.

Before the dinner started, the guests toured the room to view all the tables. I was able to visit with them about Down Syndrome awareness month and Reece's Rainbow. The speaker/singer really spoke to my heart. I have much to treasure from today. What a fun evening!

Funny, it took me several days to put this all together and about 15 minutes to break it down! haha

Day 26, Post #300 The good neighbor.

 

Wow, I just noticed that this is my 300th post here. Cool. I hope that you enjoy reading what little I have to share!

I was sitting on the couch nursing Ruby the other night while Ralph was toddling around the living room looking for trouble. He knows when I'm feeding her that it takes me a little longer to get up. He knows that it is the perfect time to get into trouble! 

He ended up climbing up into daddy's chair and playing with the porch light switches. I was pretty tired (imagine that!) so I just let him have some fun turning the porch lights, driveway lights and entry way lights on and off. He wasn't hurting anyone. He wasn't hurting himself. No harm, right?

After a while the phone rings. It is my neighbor. She asks if I'm OK. I say, "Ummm, yes? How are you?" She said that she saw my porch lights and driveway lights flashing and she thought I might be in trouble. Then it suddenly dawned on my that Ralph was still playing around with the lights and I burst out laughing!

It never occurred to me what flashing lights might signify to my neighbors! I'm really blessed with some friendly neighbors, huh?

By the way, I'm still working on a big project and I hope to have some pictures to share tomorrow. I'd like to remind you that Reece's Rainbow Angel Tree is coming SOON. I'll have more information to share in the coming days.

I'm a Christmas warrior for Maxim this year. My goal is to raise $1000 for his adoption grant fund. He is one of the most at-risk of all the waiting children because he has already been transferred to the mental institution!

This is no place for a child with Down Syndrome. He should be getting ready for Kindergarten! There is a family out there that would be able to bring him home with a little extra help from you and me. Please join me in giving and praying for Maxim this Christmas season.

Update on October giveaway.

I'm busy working on a big project tonight so I'm going to quickly update my October giveaway. 

In honor of Down Syndrome awareness month I'll be drawing for a copy of Gifts 2 - How People with Down Syndrome Enrich the World. I'll put your name in the hat once for each comment or question that you leave for me here during the month of October.

The good news - there is still time for you to comment on any one of my October posts. This is a great opportunity for you lurkers, and you know who you are, to come out of the proverbial closet and give me a shout out.

The bad news - you have your work cut out for you to beat out Barbara of TherExtras who has left me some blog love on nearly every post. Regina of The Road Less Traveled is coming on strong, but each person has a chance of being drawn!

Hope you have a great week!

Busy boy

Ralph has been a busy boy. Here he is watching Signing Time with his baby.


Looks like Ralph is taking his baby out for a drive.


It's cold and windy today. Better drape the blanket over the seat.


I watched Ralph arranging the blanket over the top of the car seat for a few minutes. He was so careful and intentional. And then, it is hard to see in the photo, he hooked him arm under the handle and tried to pick up and carry the seat. 

This is exactly what I do to get Ruby ready to go, exactly the way I pick up the car seat. He's a clever little guy.

Horsey

Ralph loves to play horsey with his big brothers.


Got to get the saddle (washcloth!)on just right.


Then he mounts up like Dudley Do-right!

I spoke too soon.

I knew it would be a crappy day when I walked into Ralph's room this morning. He had taken off his diaper and...you don't really need me to spell it out for you, do you?

So of course, I freak out because I'm trying to get Leroy to the bus on time and get the other kids out of bed and making breakfast. I'm thankful that Wesley was home to get breakfast for the kids so that I could deal with the mess.

After trying a couple of baby wipes, it became apparent to me that the job really called for a hose. I picked Ralph up by the shoulders and carried him through the house to my bathtub. He got two baths. One to get the stuff washed off. One to get the icky water washed off.

Ralph's EI teacher came a little later and we worked with matching and some beginning consonant sounds. He was an angel for her as always. And he was squeaky clean.

After she left I sat down to nurse Ruby and let Ralph watch a Signing Time video. He toddled around the front room, not really interested in watching T.V. He walked up to me and gave me a little hug and then I noticed it. No hearing aids.

I panicked. Wes was still home so I called for him to look around for the hearing aids. I scolded Ralph and I asked him to go get his "ears." Ralph walked over to the dining table at the same time Wes found the hearing aids floating in my glass of ice water!

My heart sank.

I was going to call the hearing doctor today and let her know how well Ralph was doing with the new earpieces. I was just waiting for my dead phone to charge. Instead, I whipped out an email SOS. What do I do with wet hearing aids?

I took the wet batteries out and put them into the drying canister. I'll be checking them tomorrow to see if they still work. If not, I'll be mailing sending them back for replacements. They WERE insured!!

The rest of the day was really smooth after all that. Until later when we were about to run out of toilet paper. I was looking for a parking spot at the store when I witnessed an assault! A man with a scar across the back of his head beat the stuffing out of another man right in front of the store.

I saw the man with the scar shopping in the store a little later! Unbelievable. I think I'm going to bed early tonight.

 

Breakthrough

I was so reluctant to take Ralph to his hearing aid follow-up appointment in Kansas City this week. I didn't really have the money. I didn't have anyone to be home when Leroy got home from school. I didn't have the car, only the big van. I just kept coming up with all kinds of reasons not to go.

Really, I think it all boiled down to the fact that Ralph has not been wearing his hearing aids. I haven't been making him wear them. I get frustrated because I'm busy nursing the baby or whatever else and I can't catch him before he rips them out. 

Those cute little electronic wonders cost a pretty penny! How can I accept the financial assistance that we have received for them if I'm not going to make sure that he wears them ALL the time? What a blessing! 

I took Ralph to Kansas City anyway. The gas money fell out of the sky. I took Leroy out of school to go with me. I drove the big van, no big deal. I'm so glad that I did.

When we first got his hearing aids, the part that goes into his ear canal was made using the wrong material. It was a hard plastic instead of the squishy material that it was supposed to be. The audiologist re-ordered them and swapped them out on Monday.

The new material reminds me of stale, green gummy bears! They grip the surface of his ear canals. It is more difficult to get them into Ralph's ears, BUT it is also harder to get them out. ha-HA! 

After three days, I can say that we have had a breakthrough. Ralph kept his hearing aids in the whole way home from Kansas City. He kept them in all day yesterday. He kept them in all day today! It must be the new material. I'm so pleased.

Now...I'm feeling like we need to hit speech therapy hard. Ralph has a different EI teacher coming to the house tomorrow. I think I'll discuss it with her. (His regular teacher just had a baby and his regular speech therapist is pregnant and on bedrest!)

 

Drama

After my marathon road trip yesterday, I was hoping to have a quiet day at home. I enjoy putting around, picking up, vacuuming, cooking first thing in the morning. I like to do these things early in the day.

Nope.

This morning I got a phone call from Chipper's school. It was the school nurse. Apparently, he was hit by a van while walking to school this morning. 

What? I was a little confused because he leaves before 7:00 am and it was 8:15 am when she called. Where was he now? A teacher overheard him talking to a friend and sent him to the nurse.

He was crossing a street at a nearby intersection on the way to school when a van with no headlights hit him. He went up on the hood and then fell to the ground. The van was slowing down for the stop sign, so it was not going fast. Chipper insisted that he was not hurt at all. Thank you God!

Here's the kicker - when Chipper got up off the ground the van peeled out and drove away.

Coward.

Moron.

P.O.S.

I'm not complaining, but I didn't get around to much around the house today. I contacted the authorities to file a police report. I needed to be at the school so that the officer could interview Chipper so I had to quickly pack up Ruby and Ralph and head out. 

Chipper is a great kid, but...oh my. He gets near perfect grades. He's very respectful. He helps out with the little kids. Why am I so worried about this kid?

Day trippin'

I drove to Kansas City today with the three littles, Ralph, Ruby and Leroy. Ralph had a follow-up appointment with the Speech and Hearing clinic at Children's Mercy. Each of the kids were very well behaved on the trip. Phew! No screaming in the car today. Lots of "are we there yet" though! ha ha

Ralph got his new ear molds for his hearing aids and we love them. They have a little grip and are more difficult to rip out. Ralph kept his hearing aids in all day. As soon as we got home he ripped them out. Maybe it's too loud around here?

After the appointment we played on the playground since the weather was so pretty. Every time I asked Ralph to look at me he would shake his head "no." On the way home he started running a fever. I'll bet he wasn't feeling that great and didn't feel like smiling for the camera.

Can you tell he's feeling puny?

Ruby can sit up!

Seven months old, yesterday.

My helper for the day. He only ran away twice today!

I think I'll take his photo by the big piano every time we go. It will be fun to watch him grow a bit each time!

Coping with the flu.

It's been a rough week at our house. It must have been the dreaded flu virus. This girl was hit hard.

Fever, cough, sore throat, runny or stuffy nose, body aches, headache, chills and fatigue. Check!

I feel pretty good letting her run a fever. I reason that the fever aids the body in fighting off the infection. I just make sure that she gets lots of extra fluids

My 8 year old son, on the other hand, gets Tylenol with his fever. He had several febrile seizures when he had RSV as a toddler. If I never again see a child have a seizure, it will be too soon. His dentist believes that his teeth that have enamel defects were damaged by the extremely high fever. 

It is so hard to know what to do for your children sometimes. Now that the flu has been through the house is there a reason to get the seasonal flu vaccine? What about the swine flu vacccine? What about natural immunity?

What about diet? Is it coincidence that the kids fell ill after gorging on candy from the Fall festival parade? I hear that sugar can lower your immune system.

I use my mother's intuition, and I read a lot, and I listen to experts with my critical ears on. I haven't yet decided on flu shots, even for Ralph. I have decided to make sure that the kids get some sunshine whenever possible and to cut back on sugar.

I'd love to hear your thoughts on the subject of flu shots.

Day 17

I'm going to share a beautiful piece of fiction today from The Unknown Contributor. I hope you like this...

Lunch at Pizza Hut

In my dream I am sitting in Pizza Hut because that is where I first saw her. She wanders over to my table with her big blue eyes locked on mine. She has curly brown hair... curls... rare for a child with Down syndrome. She holds her baby doll up and asks if they can sit with me.

“I don’t want to be your mother.” I blurt out.

She slides into the seat and looks at me with surprise.

“Why not?” she asks.

I suddenly feel guilty and defensive. “92 percent of mothers just like me don’t want to be your mother.” I answer foolishly.

“Why not?” She repeats her question.

“Well, because you are not as smart as other kids.” I begin.

She cuts me off with a song, “a, b, c, d, e, f, g...” After it is over she continues, “Your shirt is blue. I know that and so I am too smart.”

I thought she was four or five years old but now I see she has a gap where a bottom tooth has gone missing. This must make her more like six.

“I think you will cost more.” I tell her.

As if she is reading my mind she says, “I don't wear diapers anymore. Those are for babies.” To prove this fact, she lifts up her baby doll and shows me its diapered bottom.

“You might get sick.”

“I already was sick.” She answers. “See?” She says as she pulls her tee-shirt up over her face to reveal a faint scar running vertically down her whitish-pink chest.

“Did that hurt?” I wonder aloud.

“I don’t remember. My dad says it hurt him real bad.” She answers, her small voice muffled by the cotton shirt.

“Put your shirt down.” I say and she does.

“You might grow up to be ugly.” I know this might hurt her feelings but I have to say it.

“All grown ups are pretty.” She laughs, “Except for the boy ones. Some of them are stinky.”

“I mean, you might drool or your tongue might protrude,“ I clarify.

She sticks her tongue out at me. “My tongue is pretty,” she says, “and I only stick it out when I am tired.”

“You might die.” I feel bad saying this but she needs to know the truth.

Her answer is soft, “If you won’t be my mommy, I am already dead.”

We eat in silence for a while. When my slice is finished, I tell her that I must be going now.

“Will I see you again?” She asks.

She has worn me down. “Yes,” I tell her, “I think so.”

Great idea for flu season.

Every now and then I find out about something I should have done for Ralph when he was younger but didn't know about. Here is one.

This cute little tag from http://www.mytinyhands.com/comes in different colors and can be hung from a car seat/baby carrier or stroller. I can't tell you how many times I brought Ralph to church only to have multiple people come up and grab his pudgy little hands. It's totally understandable because the kid has gravity. He draws people to him irresistibly.

But, ewwww. How many other hands did those people shake that morning? How many of those people coughed or sneezed into their hands? How many forgot to wash after using the restroom? I could go on.

I was beside myself each week trying to figure out a way to ask people not to touch his hands without sounding harsh or paranoid or embarrassing them. Really, you only have a split second to make the request before it's too late. I actually had to excuse myself once to take Ralph to the restroom to wash his hands.

I sound crazy, but I'm not. People can spread germs and viruses before they even know that they are sick. Most illnesses are contracted by touching contaminated objects. Any cold or flu virus can be deadly for children with underlying health conditions like pulmonary hypertension. Add the fact that people with Down Syndrome may have a lower level of immunity to cold and flu viruses.

Ralph is a big boy now and does not ride in a carrier. But, he still attracts the same kind of attention. Do you think I could talk the "My Tiny Hands" folks into making t-shirts?

PSA - What to say.

I guess I should balance my "What not to say" post with one about what TO say, particularly to a new parent of a child with Down Syndrome. This can be a minefield! It may or may not be a frightening time for the new parents. They may or may not have had a prenatal diagnosis. There may or may not be additional health issues.

They may not be answering the phone! Seriously folks. I was so traumatized after Ralph was born that I would not talk to anyone for weeks. (It was mostly because he was so sick. Down Syndrome was the last of our worries at the time.) I can laugh about it now. No one had the opportunity to say the wrong thing to me because I wasn't talking to anyone.

This minefield is really easier to navigate than you might think. Isn't he cute?

Here is what you could say:

Congratulations! Appropriate for any new parent. Often accompanied by a gift!

Wow! He is really beautiful! You can substitute pretty, handsome, cute, or groovy.

Can I hold him? You won't regret this. Babies with DS are so soft! (Please always ask before you grab or touch a baby or child with DS. Germ-o-phobes like me will appreciate you.)

What could you say to a parent of an older child with Down Syndrome? What would you say to any other parent of a typical child? It's usually safe to ask questions. Ask about their interests. Ask about school. Invite them over. Set up a play date with your children and theirs. Offer to babysit.

Parents of a child with Down Syndrome often find themselves becoming socially isolated. Your invitation or offer will reassure them that their child is accepted and respected. That's a treasured gift.

PSA - What not to say. Day 14

I was visiting with a dietician today about Ralph and his eating habits. She was a friendly, well intentioned person so I chose not to correct her when she told me that she could tell that Ralph was "high functioning" because of his mild Down Syndrome facial features. I found it very hard to focus on our conversation after that.

First of all, this is totally not true. Secondly, he's two. Sure, I think he's as smart as a whip, but just like any child of two, his potential is unknown. Thirdly, just who do you think you are, anyway?

I'm a little bent out of shape so I'll need to vent for a minute. For those of you who are unsure of what to say to someone who has a child with Down Syndrome, take note. (Just for the record, I'm not known for always saying the right thing.)

Do not use the word or any variation of the word mongoloid. This is archaic and racist. 'Nuff said?

Do not tell me how happy and loving people with Down Syndrome are. This is a sweeping generalization that takes away a slice of their humanity. Human beings display a wide range of emotions. People with Down Syndrome are human beings.

Do not talk about how high/low functioning my child is. I have a very bright eight year old who cannot tie his shoes. He's great at math facts. I guess function level depends on the task at hand.

Don't tell me I'm a saint or how you "don't know how I do it." That is insulting to me. If not everyone can be saintly, like me supposedly, then perhaps killing an unborn baby with Down Syndrome can be justified. I'm just a mom doing her best to raise her children. You'd be surprised (shocked?) at how unsaintly I can be. You'd be surprised at what you could do if it was required of you.

Whew! I feel better now.

Day 13

I'm getting sick. I can feel it coming on. I would share my crazy day but I can't even type straight.

In order to stick to the 31 for 21 challenge I will quickly share one of my favorite things to do...surf the Reece's Rainbow website. This organization is an international Down Syndrome orphan ministry. 


I love to look at all the children, pray for them, and let my heart break for them. I mean, just look at this beautiful face!

This bright smiling boy is most likely a social orphan, meaning that he has living parents that can't or won't take care of him. He is almost 5 years old and is running out of time. He'll soon be transferred to a mental institution where he may not survive even another year. 

Just because he has Down Syndrome.

In a more perfect world he would be headed to Kindergarten.

Sunday, October 11, 2009

Fun with pretend

Ralph loves hats. He loves looking in the mirror. He loves looking in the mirror when he puts on (and takes off) hats. 

Strangely, I can't recall ever playing dress up with him, though. I think that he understands the concept of pretending, based on the way he plays with phones and things that resemble phones.

So today I'm thinking about the value of dress up in response to Barbara at TherExtras. She is holding a blog carnival on the topic of the developmental benefits of costuming for Halloween.

Over the years I've been a bit ambivalent when it comes to the celebration of Halloween. I so want my children to remain innocent of evil (Rom 16:19). Anymore, I let the kids dress up and collect candy. We just don't make a huge deal out of it. 

Why should we put on costumes only one night of the year anyway? If it is so fun, why not wear costumes more often? I decided to explore costuming with Ralph this week .

Rose and I have been known to drag out my massive collection of makeup just for fun. (I'm a recovering makeup artist.) I hope that this is beneficial to her development. What does it mean to be a grown up woman? Wearing makeup plays a huge part in the mind of a little girl. My guess is that this kind of play helps to crystalize a child's identity while stretching their imagination at the same time. 

Here is Ralph, the scaliwag! Don't you wish you were this happy while looking at your mostly naked body in the mirror?

I'm a pirate!

Showing off my sexy chest

Completing the look with a little facial hair.

Time to clean up and get back to reality.

We had fun costuming today! I've been looking for some new activities to keep him busy and learning while the big kids are at school each day. I'll be dragging out the duck and dog costumes tomorrow for some non-human dress up experience. I wonder if I can get Ralph to sign "I'm a dog?" 

More (rambling) questions than answers today.

Today I couldn't help but think of this post by Debbie at Three Weddings on the topic of wandering and eloping. Ralph has learned that he can open the door of his Sunday school room and escape. Is this going to be a problem? Will Ralph be a wanderer? An eloper? Is it common for a child with Down Syndrome to run away? 

I worry about these things from time to time. I'm reminded of 16 year old Nathan Vredevelt who died after wandering onto a freeway last Spring. I'm looking for ways to give my son the freedom he craves and teaching him how to stay safe at the same time. 

I came across a kid leash while shopping at the mall last week. You know - the kind with a little bear shaped backpack...or was it a monkey with a long tail? Is this the way to go? Am I robbing him of opportunities to learn to restrain himself by restraining him? I'm going to need to bounce these ideas off of my collection of friends with older children with Down Syndrome. Do you have any thoughts on the matter? 

To be fair, Ralph is not the only one of my children to attempt to "escape" Sunday school classrooms. Thomas and Leroy immediately come to mind! Perhaps this will only turn out to be a two year old thing with Ralph? 

Time to lighten up already. Photos anyone?

These are from the Fall Fest parade yesterday. I'm chuckling when I say Fall because the weather was windy and COLD!! At least I saved the $25 I would have spent on carnival rides! (I'm so cheap)

Check out the playpen on the back of this tractor!

Leroy doesn't care if it is cold.

Pink is good.



I just love that chin dimple!

He's looking tough in the monkey hat!


I don't normally care for the saggy baggy look, but I think Ralph can carry it off!