Low Expectations

Theo continues to surprise me. Over and over it seems, I underestimate him. I'm trying to understand why I don't have higher expectations for him.

When we met Theo for the first time, http://psalmsixtyeight.blogspot.com/2010/07/where-to-start.html, the orphanage caregivers told us that he did not understand anything? Did I somehow take that to heart?

Low expectations are partly to blame for the fact that he laid in a crib so long. Starving. And starving for love. May I always remember that and never fall into the trap of low expectations.

He understands:

Yep, it was a big day.

Guess who came home today?

And guess who was happy to see him?


That's right, Richy is home for Christmas. We've not seen him since May.


And I'm also happy to say that Ralph had a great report today from the cardiologist.


Ralph's pulmonary pressures are near normal after 2 months of being off his medication. YES!! I couldn't have asked for better news at Christmas time.

Big day tomorrow

Life has been proceeding at warp speed around this house. Therapies, homeschooling, muddy puppies, laundry, dishes, doctor appointments, gotta get home (or out of bed) before the bus gets here!

Now Christmas is almost here, but no time to think about that. Ralph has a cardiology appointment in the morning. Somehow I will get the children fully dressed off to school by 8:30am so that I can get Ralph fully dressed and off to the doc by 9.

My little love went cold turkey a few months ago and quit his pulmonary hypertension meds. (I just realized that I'm having trouble blogging these days because I quit staying up for his midnight dose.) We did this last year and it didn't work so well. He ended up going back on the medication and my hopes that he would outgrow his condition were dashed.

Tomorrow we will find out if Ralph has kicked PH butt or if he'll be back on medication again. It's a big day.

Back soon...

Been a little preoccupied...

Be back soon.

Pondering thankfulness

Wow! Where did November go?

I spent the last week in Ukraine getting Project TLC off the ground. Now I'm home and so very thankful, but perhaps not in the ways you might expect.

After living with Ukrainians and spending time with Ukrainians and trying to understand life in Ukraine I'm less thankful for what I have.

Did you get that? I'm less thankful. At least for my material possessions.

I'm more thankful for the experiences and relationships that have blessed my life. I hope to explore this more completely in the near future. But, for today, let me ask this question: are you holding onto something of material value that might be interfering with the relationships of value in your life?

Thursday is Thanksgiving in the United States. Instead of heading out to the grocery store to gather the ingredients for all the traditional American Thanksgiving dishes, I'm going to do something different. I'm cleaning out my freezer.

In the past I have bought things to stick in the freezer, and they are never seen again. Why must I hoard food this way? So today I started with the top shelf. I found a mini loaf of cocktail bread, some fruit and pecans and some freezer burned stuff that went straight into the trash. The pecans will make a nice pie. Ruby and I ripped up the old bread to use in stuffing.

It was fun to spend time with my daughter, working together in the kitchen. I look forward to finding more ways to put relationship over possession as we move toward Christmas.

Sleep Over!

Ralph finally had his sleep study last night!

New recommendations from the AAP are for children with Down Syndrome to have a sleep study done by the age of four. You can read the updated guidelines for yourself HERE. I don't agree with all of the recommendations, particularly the updates related to AAI and AOI. Read what Renee has to say about that HERE. But, back to the sleep study...

I did sleep studies with Zhen and Theo back in September and that was a disaster! Theo had to have arm restraints and Zhen had to be held down until he went to sleep.

Ralph was a totally different story.

We arrived at the sleep center right at 7:30. Ralph was the only study of the night. We took a look at the room and I was disappointed that they didn't have a crib big enough for him. We set up a side rail on one side of the bed and I planned to sleep on the other side of him.

Next we went to sit in the little room where he would be wired up. Thank goodness for the HUGE mirror on one wall. If there is anything that makes Ralph happy and relaxed, it is looking at himself!

As the technician started applying stickers and wires to his legs and belts with wires around his trunks, I told him that tonight he was going to be a robot. We did a little robot thing with our arms and made some machine noises. This was fun! Ralph was an angel while each little electrode and wire was attached to his head. (Thank you, Yo Gabba Gabba!)

Back in the bedroom, Ralph got a mustache-like sensor applied to his face along with a nasal cannula. It's been years since he has worn a cannula, but he didn't seem to mind a bit. Once all the wires were plugged in, and the lights were turned down, Ralph laid back on his pillow and promptly went to sleep.

Ralph slept fine.

Me on the other hand...I just cannot seem to fall asleep at this place. I counted sheep. I prayed. I couldn't get comfy. I couldn't turn off my mind. Just knowing that I had to take care of children in the morning was making me desperate to fall asleep.

Oh, and when I say that Ralph slept fine, that means that he flopped around and punched me all night long. I did eventually fall asleep, but was regularly awakened by a sticky head of hair in my face. One time I had to grab Ralph before he plunged over the far side of the bed.

About 5:30am we got up and the technician and I removed all the tape and stickers and stuff from Ralph. He went potty, and we headed for home. Not my idea of a fun sleepover, but it was done. And he was a very, very good boy.

I did get to look at Ralph's study chart briefly before we left. He has some obvious issues during certain phases of sleep. I anticipate surgery for him as well and Zhen and Theo before the year is out.

Fun on All Saint's Day

I took about 50 photos of these children sitting on the steps and not one of the photos was perfect. The experience was something like herding cats! This is probably the best one.

Miss Rose, looking WAY too grown up for my taste.

This morning before school we had a little discussion about All Saint's Day. Then I told the children about Martin Luther and the stunt he pulled on October 31st with his 95 theses. Shame on me for neglecting their education this way, but the conversation went something like this:

Me: You do know who Martin Luther is, right?

Assorted Children: You mean Martin Luther King Jr.?

Me: Umm...no. Martin Luther.

Assorted Children: You mean Martin Luther King Jr.?

Me: No, the first Martin Luther. He was born over a thousand years ago.

Assorted Children: Was he Martin Luther King Jr.'s dad?

Me: Isn't it about time to watch for Theo's bus?

Photo catch up...

I'm not so sure how Ralph is doing since he stopped getting his pulmonary hypertension medication. What do you think of those dark circles under his eyes?

He's still full of energy. Playing in front of the mirror is his favorite thing.

This is my view in the morning. And at bedtime. All three of them were making poop sounds and laughing! And, do you know anyone who sits Indian-style on the pot like Ralph? So weird.

Here are some leftover photos from our fun day with the McDonald family. This girl is cra-zay about Zhen!

I think this is the best photo we could get of the three Ukrainian boys! ha! At least TJ knows how to ham it up.
See what great lengths we went to? Sit. Stay. Get back up there. Sit. Stay. Smile!!
Cute! Toby was giving Theo some valuable advice.

Crazy boys

I had so much fun last weekend that I'm still recovering! Here is a small taste of the craziness that I enjoyed while trying to get a nice photo of these three Ukrainian boys:

Is it me, or do these boys all have the same exact color of hair?

Challenge FAIL

I've failed the 31 for 21 challenge. But that's ok with me.

You see, I have stayed up late for years to give this boy his medicine at the proper eight hour intervals. It would be easier, and earlier in the evening, if he didn't go to afternoon preschool. But, it is what it is.

Or, what it was...

Ralphie had a cardiology appointment last Friday. During his heart echo, I could see that his pulmonary pressures were as low as I had ever seen them. The doctor confirmed this to me later. Low is good. Got that?

I had the choice of letting Ralphie continue to grow out of his pulmonary hypertension medicine, or giving him another two month trial off of the medicine. If you remember, we tried this earlier in the year and were disappointed.

I chose the two month trial. I have no illusions. I'm well aware that this might not work, so my hopes are not high.

But, now I get to go to bed at the same time as normal people. Don't be surprise if this blog continues to suffer the loss of my prime late-night blog time. It's OK.

Beating PH and grinding it into the ground trumps late night blog time. Can I get an "AMEN!"?

Birthday boy.

I was very busy with my birthday boy tonight. He'll be the first to tell you that he's mommy's boy.
Over sweet & sour pork tonight, he told me that he wants to be an animal doctor. This is new!
One thing is not new. Those eyes. What would you do for eyelashes like that? No fair!

Looking back tonight

Ralph is four years old. He has great, I mean GREAT, receptive language. He knows heaps of signs. However, he just struggles to hard with the spoken word.

Well, that is starting to change.

Umm, yeah. He's got one word that comes out clearly and without a doubt. Can you guess?

Yup, we have "no." AND, we have a boy with a mind of his own.

When we get home from church and it's time to get out of the van, Ralph slips into the back of the van and give me a "no!" At lunchtime, when he slips away from the table to eat his sandwich on the couch he gives me the "no!" When I ask him to stop strangling the puppy with his particular brand of affection, I get the "no!"

On days like today, it helps to remember when he was really little and really helpless. haha!

Here is Ralph in his car seat for the first time ever, on the way home from the hospital for the first time ever.

And asleep in his own crib for the first time ever.
No way would this sweet little thing ever backtalk his momma.

Ralph and church.

Gathering with our church family on Sunday morning sets the stage for the week. Without it, I feel a bit disoriented and off kilter. It builds me up, too. So we make it a priority for the whole family.

Over the past four or five years, several children with additional needs have either been identified, started attending, or have been born into this church family. As a result, a Friendship program has been initiated to assist children who need individual assistance to participate in Sunday school classes. There is also a Friendship classroom which is self contained.

Ralphie has been included in the nursery setting since he was very little. He used to push his little oxygen tank around in a toy shopping cart! I've just been so very pleased with the way he has been received and loved. We have pushed through fear, at times, and made things work.

Now that Ralph is four, he is too old for the nursery. I had a little anxiety attack earlier this fall when I realized that he would be sitting through services now. He was just not ready for that.

Thanks to the Friendship program, Ralph has several volunteer helpers for Sunday school. One has worked with him for over a year and is actually a sign language interpreter. It is wonderful to see them working and signing together. She can only attend two Sundays each month due to her work schedule, so Ralph has two other young women who alternate assisting him in Sunday school on the other weeks.

But what about the worship service? What was I going to do about that? Does he look like the kind of child who can sit quietly and listen to a sermon?

This is where the Friendship classroom comes into play. Our fantastic Friendship coordinator was able to find one more helper for Ralph each Sunday. This lovely young lady sits with our family in the back row of the worship service during the announcements and the worship songs. I get to hold Ralph in my arms while I sing praises. I get to encourage him to sit quietly and patiently. When the sermon begins, he and his helper slip out the back door and head for the friendship room to play until it is time to go to Sunday school.

Isn't that great? It works so perfectly! I really feel spoiled by all the love and care given to me and my family at church gatherings. I'm so grateful for the ladies who give up their time and energy to work with my children.

Next time, Zhen and Theo!

blech

I'm not feeling so hot tonight. HOMY has offered to stay up and do meds for me, so I'm going to hit the sack.

In the meantime, check out the new blog for Project TLC. It's a work in progress but stop by and "follow." Zhen says do it!

Sunday

I was going to title this post "A Typical Sunday," but upon further reflection, there is no such thing for our family. Instead I will just tell you about today.

Dad is an usher at church and today he had to be there at 7am. My teenager was away at an academic weekend at KU. You know what that means for me. Yup, me vs. eight slippery little kids. The goal is to leave the house at 9:15.

I get Zhen and Ralph up first. The go straight to sit on the potty. I ruffle Theo's hair and then I raise the blinds in the little boys' room so they don't get destroyed by rough hands later in the day. Then I move Zhen's crib so that it sits on top of the air register. If I don't, the boys will stuff all their toys down there later.

Hopefully, the little boys are still sitting down. Zhen is great. He always sits until I tell him to get up. Ralph won't sit too long. When he is done, he is done! Theo waits a little longer while I get Ruby up and sit her on her potty next to Zhen.

Next Theo gets a fresh diaper and heads for the highchair. He gets started on breakfast while I help Ralph, Zhen and Ruby get pants on. Next we flip on the radio, because our rule is "no TV on Sunday morning."

At this point, I'm looking around for my older children. I assign a buddy for each little child a buddy to make sure they eat. We do bagels or cereal before getting anyone dressed. Someone always spills something, right?

This the point where I start freaking out because I didn't lay out clothes and socks the night before. So I start the hunt for matching socks. Ralph, Zhen and Theo get pants, socks, braces and shoes on. No shirts until we are ready to load the van.

Next I have to convince my fuzzball two year old that beauty shop is fun. Sometimes it works, sometimes not. Today she tolerated me combing her hair just long enough to get two crappy little pigtails in place. Good enough.

Everyone is ready to go. Except me. I'm still in jammies and haven't even considered eating. I get 10 minutes to throw on some clothes and a little makeup and we load up the van. I'm usually sweating, so it's nice to leave the house and hit the cool air. Ralph gets buckled up first or else he will end up in the driver's seat pushing buttons and "driving." The other three littles are easy and we roll down the driveway at 9:30.

Late again.

Next time, adventures in the church building.

Buddy Walk fun!

Can we get going already?

Ready!!
Today was our annual, local Buddy Walk to raise awareness for Down Syndrome. It's one of my favorite events each year. I love gazing at the faces, lit up by the unmistakable beauty of an extra chromosome.

Oh, and the unmistakable flop-n-drop!
Buckle up!

Grab your blue gorilla! And go find your picture along the route.

The event ended too soon due to the arrival of chilly rain while we waited in line for food. Another disappointment is that there were no medals left for our children as they crossed the finish line. I didn't even get photos of that.

On a positive note, we won a gift basket in the raffle and it was delivered to our home by our good friends, the Hendrich's. Hanging out and chatting with them for a few hours was so fun!

October is off to a smashing start!

Best month of the year.

Hands down.

Meet Bruno.

Meet Bruno. One of the newest members of our family.

He is an English Pointer. For a bird dog, he's extraordinarily calm and mellow. He officially belongs to Jordan.

In keeping with our family's adoption style, he has a minor disability. haha! He's missing almost half a hind paw and a toe on a front paw. He was attacked, along with his puppy brothers and sisters, by an unknown varmint as a wee little baby pup. Could have been a rat, or a tomcat, or who knows.


He's settling in with our family and growing very fast!

I just had to share this photo of Ruby eating beets. This was our afternoon snack. She's so open minded about trying new foods, especially when the other children are away at school. There was no one around to make disgusting faces and noises when I opened up the can of beets!

I actually got some video of her saying, "I love beets!" I'll be saving that for when she's older and refuses to eat her veggies.

The unexpected.

Parents of babies and children, and adults too, I suppose, with Down Syndrome are typically very deeply in love with their children. It is not more, certainly not less, but different somehow than the love I feel for my other children. It's a kind of "us against the world" type of love that knits two hearts tightly together.

I'll admit, I often carry a chip on my shoulder when it comes to my boys with DS. Because as much and as deeply as I love them, I'm acutely aware that the world typically sees them differently. As less. As less important. As more work. As more trouble. I've come to expect it. And I'm ready for it. I have built a little wall around my heart. And some tougher skin.

And then...

the unexpected happens.

This boy in the stroller, my precious Theo, started Kindergarten last Tuesday. He is in a life skills program at a small school in a neighboring town, but joins a regular ed Kindergarten class for classes like phys ed, music and library.

The school change was rather sudden for my taste and I was fearful and emotional. So, I dropped in unannounced this week and took a tour of the school with him. I arrived with my old friend, "Chip Ontheshoulder," not knowing what to expect.

Theo walked down the hall between his teacher and I for a good long stretch. I decided to carry him when he stalled out near the library. As we prepared to take a look inside the library a class of children was lining up to return to their classroom.

It was Theo's Kindergarten class.

These precious little children walked out of the library and spontaneously lit up when they saw Theo in my arms. Without exception, and unprompted, each child said "Hi Theo!" and cooed over him as they passed.

I could not help myself, I cried. The walls came down. My heart was softened.

I spent some more time looking around the school after that, but I don't remember much else. I had already seen what I needed to see.

Once again I'm blown away. The little boy who laid starving and alone in a crib for four years has people all over the country rooting for him. Now he has a fan club at his new school, too. I wonder if it will ever cease to amaze me?

Beauty shop

Look who is all ready to go to school! One problem...she's only two! Oh well, we'll just start her out at home.
Look who finally has enough hair for pigtails!

If you only knew how difficult it is to get her to allow me to even comb her fuzzy, curly hair! We play a game called Beauty Shop. She sits on the bathroom counter top where she can see in the mirror, with her toes in the sink, with the water running slowly. I carefully pick out the knots while the water distracts her.

Sometimes it works. Sometimes it doesn't. She is strong willed.

She loves to do school. But is she right handed?
Or left handed?

I'm leaning toward left, as her grasp looks a little more natural. But, she does switch back and forth with ease.

She's a treasure.

How typical is that?

When Ralphie was a baby I wondered what it was like to have a child with Down Syndrome. I mean, really, he was a baby. He was just like all the other 7 babies I had previously cared for. I was so curious what life would look like when he was older.

Ralph is not a baby anymore. He's four. And now I know. He's just like the 7 other children that have previously raised to this point. For the most part anyway. Communication is his biggest challenge.

He's pure boy.

He's busy.

He's so typical! So much so that I often forget about Down Syndrome altogether.

He's just Ralph.

He puts his underwear on like every other four year old boy I've ever known. How typical is that?

New school for Theo

I never have cried when my children go to Kindergarten. I never got in the car and raced the bus to school to get their photo stepping off the bus for the first time. Just not my style.

Until now.

Theo is so very delayed. When you take the delays caused by Down Syndrome and then you add severe neglect, zero stimulation, and near starvation for four years you end up with a very damaged child. You can take the child out of the orphanage, but it's tough to take the orphanage out of the child.

Theo started preschool in January, going three afternoons per week. He has made some solid physical gains over the past year. In other areas he is just not making good progress, so I asked to have him reevaluated.

Last Friday we had Theo's IEP meeting and have decided to move him to a new school where he will attend 5 full days each week. It's what he needs. It's what he is ready for.

I wasn't prepared for the wall of emotions to hit me. Theo will be gone...all day long...in a neighboring town. He will have more face time with his teachers than with me. I have to buy school uniforms for him. haha! I'm going to miss him like crazy!

This morning his new bus driver called me to make arrangements for transportation. She sounds quite nice. Very grandmotherly. He gets picked up @8:20am tomorrow. Oh goodness, there go the tears again.

I may have to try to beat the bus and get some video or photos!

He started it.

I never imagined that I would have a child with Down Syndrome.

I had nothing against it, it just never even crossed my mind. Funny, because I have a cousin with DS. I also have a very close friend whose daughter has DS and shares a birthday with me. (I cringe when I think of the awful questions I used to ask her. Boy was I dumb! That's one reason why I don't really mind when people ask me dumb stuff. I remember when!)

Ralph started it.

Because of him I started blogging. Because of him I met some incredible people, some of them doctors! Because of him I go to Buddy Walks every October. Because of him I learned a new language, filled with acronyms and initials. Because of him I learned some medical skills and can change an oxygen bottle in complete and utter darkness. ha!

Because of Ralph, I did loads on internet research on Down Syndrome. In the process, I found that children with DS are still routinely placed in institutions in many countries in the world. In the process, I found Theo and then Zhen, two orphaned (rejected by their parents at birth) children with DS from Ukraine. They are now a part of my family. In the process I met some more incredible people and darling orphan children.

Soon I'll be headed back to Ukraine to try to help those children live better lives.

Ralph started it.

I'm so glad that he did.

I'm Baaaaack!

Grab This Button

I'm back from from my unofficial, lamey bloggy break in observance of Down Syndrome awareness month. Each October, I take the 31 for 21 challenge to bring awareness and education about Down Syndrome.

I have three boys with Down Syndrome. Theo is five years old. Ralph and Zhen are 4. My boys are quite young and so I still feel like a newcomer to the DS scene. It's a scene that I'm proud to be a part of.

If you want to join this blogging for DS awareness challenge, visit HERE and sign up. If you have any questions for me, leave a comment. Happy October!!

Theo

Zhen

Ralphie

Sweet 16

Chipper, not his real name, turns 16 years old today. Of course he's sweet, but he also got to scrape out the frosting bowl!

He asked for an ice cream cake this year. Not my best decorating effort, but still, it's butter and sugar so who cares?


Theo tore into his cake. He can't just sit and wait for a bite. He meets you halfway or more if you are too slow.

Grandma C came over and a few cousins, too.

I did learn one thing yesterday, don't try to make the whole ice cream cake in one day. It needed more freezer time. Overnight would have been ideal.

More miscellaneous photos from yesterday. Rose. She takes a nice picture, huh?


Ruby in her typical pose, fingers in mouth and belly button.


Zhen actually keeping his glasses on! I've not been forcing the issue with the glasses, but I need to. The eye that had the cataract is still not developing correctly.