Me ‘n Jack: New teachers, new room, new friends [Down syndrome, preschool]

Today was the first day of school!  I didn’t get to stay the whole time since I’m not all the way better from surgee yet, but I had a lot of fun while I was there!

 

Me and Jack decided to wear our shirts that he got for us on his trip a few weeks ago.  He came to my house before school so we could take some pictures.

 

“Good morning.”


Braska: “We’re not going in the house. Pictures are outside today. You ready?”


Braska: “Come over here, and we’ll let KiKi in the picture with us.”

Jack: “What if I want to just stand here?”


Girls: “Is he going to sit down?” “I don’t know.” “Does my hair look ok?”


Braska: “What if we kind of sit like this?  It’s what the cool kids do.”


Jack: “Ok, I’m here. What now?”

Girls: “Just wait for Mommy to take the pictures. Do your hands like this.”


Jack: “You want cheese? I’ll give you cheese!”

Braska: “Don’t look now but he is being goofy again. No! Don’t look!”

KiKi: “He’s still pretty cute, though.”


Then we took some more pictures in the hall by our classrooms.  We’re not in the same class this year.  I don’t really like that, but at least he’s right next door.  It was really weird to go to meet new friends without Jack.

”Are we done yet?  It’s almost time for school!”


”Please, God, help me make some fun friends in there.”


”Here’s the plan… if you miss me, just knock on the wall three times and we’ll meet in the hallway.”


”I like my cubby, but seriously… why can’t Jack be in my class with me? Where is he?”


Me and Jack both had good days at school.  Tomorrow I get to stay the whole time because there’s only 3 kids on my small class days.  Then next week I get to go regular all the time!  I like my new teachers and I think my new friends are really nice too.

 

While Kinlee was waiting for me to get done at school, she played on the pirate ship.

 

She went around and around and around and kept going down the slide.


Then she found some great big balls. Almost big as her!


Here’s some little movie of Kinlee playing.  (Grandmas like these kinds of movies.)

Make an on-line slideshow at www.OneTrueMedia.com

YAY for school!!!

Comparing comparisons [Down syndrome, siblings]

Today I received an email from a blog friend (who I didn’t recognize immediately…sorry!) asking a question that prompted what I have been meaning to post about for a while.  So I asked permission to share the email and response, removing identifiers, for a couple reasons.

1. I don’t like to rewrite things when I don’t need to.  Who has the time?
2. I know there are SEVERAL of you other blog buddies out there who can relate to this situation, and I’d really love to share your input with her as well.

So read along, and please share your thoughts…if you want to do a post of your own, or you already have one that’s relevant, leave a link in the comments. Thanks.  Online support is VITAL, I think. I’d be lost without all the things I’ve learned from the other “DS moms.” (I know…not PC.)

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Her email:
I have a 2 1/2 year old who has down syndrome, and an 11 month old who is 'typical'.

My question for you is: how do you not compare them? At 11 months, V is doing more things than R did at 18 months. 

It scares me how fast V is learning and reaching milestones.  I am ashamed that I even compare them at all.  It's so hard to watch R at her therapies, struggling to climb stairs, or say a word, or stack a block, yet V can do those things and we haven't even showed her!

I'm sorry. I don't mean to vent. I just thought you might have some advice for a mom with an older child with special needs and a younger child who will soon surpass the older.

Thank you.
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My response:
Hi,

I’ve been debating a post about this, formulating it in my head very recently.  Funny that you happened to write today.  I don’t know that I have any great advice, but I’ll share how it looks for me.

As you might know, my girls are 27 months apart, Braska will be 4 in November and Kinlee is a few days away from 17 months.  The simple answer is that I DO compare them, sometimes just because they’re my kids and I think every parent marvels at how different and how similar their kids are, no matter what their chromosome count is.  Sometimes I enjoy looking at how Kinlee at 17 months is the same size Braska was at almost 3 years old.  It’s fun to me, not to Braska’s insult, but just because I enjoy their differences.  I love to take pictures of Kinlee in things that Braska wore, though now, they are wearing many of the same things!

That said… there are times when it’s not as “cute” to compare, and I’ve found that recently I’ve been faced with the hardest issue.  It surprised me, but I’ve had to deal with it a little more than I expected.  You see, Kinlee and Braska basically started walking at the same time…Kinlee was 13 months, Braska was 40 months.  Braska has progressed well, is getting stronger, and has gained better balance, but she is still very wobbly and very much a “new walker.”  Kinlee sped right past her, handling steps more skillfully, climbing more, balancing better, almost running at this point.  Braska is significantly delayed in her gross motor—it is one of her toughest areas, as she has severely low tone.  We know this, we knew this would happen, and it was ok.  I’m not too bothered by the walking issue.  BUT in the past couple months, Kinlee has taken off in her speech and language.  This is Braska’s STRENGTH!  Braska’s done extremely well with speech and enunciation, especially in the realm of kids with DS, and we’ve been very proud of her.  We work with her, but it is clearly a natural strength of hers.  With Kinlee fast approaching Braska in the speech “race,” I realized the other day that soon, ALL of Kinlee’s skills will be beyond Braska’s.  And that was hard for me.  I could deal with Kinlee passing her up in the weak areas, but once she overtakes her in the area of strength…what else is there?  She already uses “yes” and “no” more appropriately than Braska, who only this past week has started using “no” when she has a preference that would make it the right choice.  She can make her requests, follow directions, and understand a more complicated situation much more easily than Braska can.  It’s all a little hard for me to accept, but yet I am excited Kinlee is doing so well.  How to live in both of those worlds?!?

I never expected this to be a concern for me.  We don’t really struggle much with what Braska “can’t” do. I’m fine with her pace of learning, I expect her to do her best, but I don’t care too much about where she falls on a chart or in comparison to other 3-year-olds.  And yet, I’m hit by this situation of Kinlee preparing to fly right by her in the milestone sprint she’s on.  What to do about it?  I don’t know.  I must refocus back on the fact that Braska is a phenomenal kid, just like she is. She is by far the sweeter, more compliant, consistently happier, easier to deal with, and more loving child.  And I love that about her.  Kinlee is pretty great in her own right, but she’s a challenge in many of these areas, which I think is probably to be expected, and yet we don’t really KNOW what to expect. 

I do SO get what you mean about how the younger can just GET things, like without being taught specifically for hours and hours before producing a result.  It’s been amazing to watch Kinlee surprise us over and over.  Last night I took her to the store with me, and she looked over at the side while I was choosing a loaf of bread and said “Buns!”  And she was right.  They were hamburger buns.  Something we NEVER have in the house.  I think we’ve used them once at her grandparents a couple weeks ago… how in the heck did she know that?!?  And animal sounds… we basically were reviewing with Braska, as we often do, just playing the “what does it say” game, and Kinlee knew them all right on after the first time through!    I can’t get over how one day she doesn’t know (fill in the blank) and the next day she knows it completely!  Braska has serious feeding issues, is on a g-tube, and isn’t anywhere near feeding herself, because she doesn’t really want food in the first place.  Kinlee was given a spoon, shown how to use it once, and she has a decent grasp of it.  Not that it’s perfect, but she gets it.  Amazing!  We often refer to Kinlee as the “superhero” of the family.  But then Braska is the one who has endured open-heart surgery and thrived with beauty and grace throughout the whole struggle!

Would I want to change Braska to make her “keep up” better?   Nope, not at all.  I’d love it if she were to be able to learn more easily or grasp concepts more fully, but I don’t know what other things we might lose in that adjustment that I’m not willing to let go of.  I have come to believe, once again, that she is precisely who she was designed to be, and I can only adore her for being so purely that.  There is no pretense to her, she doesn’t try to be what she’s not.  She’s 3, she’s a girly girl,  and that’s all that’s there.  And I like it that way. 

I don’t know if this helps any, but I can only encourage you that there are a lot of us out here who are in the same boat.  I have a few blogger friends who have a kiddo with DS as the oldest and then another one within the next couple years.  It’s amazing how similar our stories are, and yet how we each handle it with our own style.  If you wouldn’t mind, I’d love to post your question (names removed, so you wouldn’t be identified at all, if you like) so that some of the other moms in this position could offer their insight as well.  Would that be ok with you?

The day that Kinlee uses her first full sentence in a more concise and language-appropriate way than her sister, I’m going to have trouble with it, even while I celebrate her accomplishment.  I hate to see Braska be truly “behind” her little sister, but I know that Kinlee is going to be a great leader for her to follow after.  Braska will benefit greatly from Kinlee’s being “ahead” of her!

Many blessings… love them like crazy, and celebrate them, no matter how quickly or slowly they got to the sweet spot. :o)

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How would YOU answer the question??

Having twins! [Down syndrome post]

Did you do a double take at the title?  Did you jump right into the post to get the “big news”?  It’s funny what a couple words and an exclamation point can do to some people.

We’re not having twins. Or babies of any kind.  Just to be clear.

I get asked a lot about how the girls are doing in terms of development and size, relative to each other.  Only a few times have I been asked when we are out if they are twins.  I think the difference in hair length is the big giveaway for most, at least that’s been the “tip-off” for a couple people who mentioned it.  But we do get a lot of comments about how similarly sized they are.

There have been many times in the last few months when I’ve thought that this must be a little peek into what it’s like to have twins.  At least for this little period we’re in right now.  Developmentally, they are so close in age in many ways.  Not all.  Braska still has Kinlee beat with speech and language, that’s for sure.  But Kinlee is picking up words and signs faster than I can keep up.  But with gross motor, Kinlee has passed Braska by.  Kinlee can climb more efficiently, walk steadier and more quickly, she is far more balanced and solid on her feet, and she has a great deal more stamina than Braska.  With fine motor, it’s the same story.  Kinlee can manage small things, open lids, sign some things more correctly, and she can push any button she wants with great accuracy.  These are things that Braska struggles with.  Though Braska knows far more signs, she doesn’t necessarily do all the intricate finger work correctly because her little cute, stubby fingers don’t cooperate with her.

Clearly, they are very different little girls.  But for this short period, one that will probably be fading away by mid-summer, they are interested in much the same things, entertained by some of the same things, and they function very similarly in the home setting. Soon Kinlee will be enjoying her role as the leader, which she is practicing currently when she gets the chance, and Braska will be following and learning from her.  And that’s ok.  That’s not bad, in my opinion. It’s just what is.

I’m not selling Braska short, and I’m not saying Kinlee won’t learn from her later on.  I think Kinlee will always learn from Braska, and there are definitely areas where Braska will maintain her “lead” for quite some time.  But the reality of developmental delays is that at some point, the younger child will surpass the older child in some physical and cognitive realms.  We’re ok with that, because we believe Braska is exactly who she is supposed to be.  She doesn’t just “happen to have” Down syndrome, and she definitely doesn’t “suffer” from it.  She was created just as she is, and though there are some times I wish I could help her in ways that I cannot, I wouldn’t change anything about her most core qualities and design.

Comparisons can be dangerous, I know. But I am comfortable that we are enjoying this time that they are so nearly matched and we’ll celebrate them both as they grow and progress through the next stages.  We cheer Braska when she takes a bite with proper mouth and tongue position and when she closes her mouth around her straw, even if she doesn’t drink, because this is huge!  And we cheer Kinlee when she eats her whole meal by herself—veggies, meat, pasta, fruit, and all, washed down with a big cup of milk.  Different celebrations, but the same excitement for each.  We’re impressed with them both for all they do, and just because they look so similar in size right now doesn’t mean that we don’t recognize their individual needs.

It’s fun that they can share clothes. It’s fun that they both love to wear bows in their hair.  It’s fun that they both like to hold hands and walk to the car after church.  They will change, we will change, and all the elements around us will evolve as we go through life.  But for now,  it’s kind of fun having this little tiny glimpse of what it might be like to have twins.

Growing up numbers

Today Miss Cathy came to see me.  She helps me make sure that I’m eating good healthy things and getting enough cal-lor-ees.  She has one of those silly scales that I have to sit on to see how big I am. 

My new numbers are bigger than I’ve ever been!  The scale said 23 pounds 4 ounces today.  And I was 33 3/4 inches tall!  Woo!  I’m getting bigger!

Mommy says I still got alot of growing to do, but it’s good that I’m trying hard.  My jeans have not been fitting me very well lately because my belly is getting smaller.  (And I don’t really have a belly anyway!)  I even had to change my pants at school today before Mommy left me for the day because my jeans wouldn’t stay up.  Ha!  I had droopy drawers, Mommy said.

Me and KiKi can wear the same pants, but KiKi is a little shorter, so I need my pants to be a little bit longer.  But when we wear our summer clothes, we can wear the same ones.  Isn’t that funny??  I need to get to working harder to grow so KiKi doesn’t get bigger than me real soon!

KiKi did her numbers today, too.  She was 21 pounds and 4 ounces.  And she is 31 inches tall.  So she’s going to catch me soon, I think.  She already has a bigger belly than me.  I think it’s funny when we’re in the bathtub to play on her belly like a drum because it’s kind of big and out there.

We’re getting bigger.  I guess that’s what we’re supposed to do.  But Mommy and Daddy are trying to get smaller, so I don’t know what’s going on with them.  Maybe they want to get little like me and KiKi because we’re so much cuter!

Windy Weekend: Part 1

Remember when I told you about my long ride and showed you the silliness me and KiKi were having on the bed??  (If you forgot, you can go here.)

Well, we had a really fun weekend with lots of nice people and some new friends.  We went to Aunt Karol and Uncle Jim’s house a bunch, and it was fun every time!! They have lots of kids to play with and some great toys.  I’ve got a LOT of pictures to show you, but I’ll do it a little at a time so you don’t get too tired.

We got there on Thursday and Mommy had to get our things out of the car. Here’s what me and KiKi did when Mommy wasn’t looking.


Then we went to watch Jade run.  She is SO fast!  Uncle Jim and Aunt Karol took us right down by where she was running so I could see really good.  We said, “Go Jade!!!”  (Well, I was thinking it, but there were alot of people around that I didn’t know, so I didn’t say it loud.)  It was REALLY windy the whole time, so Jade had to work super hard to run fast.


We got to meet lots of nice people.  Most of them were brothers or sisters or cousins of somebody.  That is a really big family up there!


When the sun was going away, it got a little chilly, so I put on my warmer shirt that they gave me. This is when the wind was blowing so hard that I almost fell over.  I said, “Whoa!!”


I did lots of walking, too. I’m getting pretty good!


Me and KiKi held on to the fence and watched everyone walking around and all the kids running.    

Can you see what my shirt says???

It’s special for Laynee because she was always the best cheering girl and the prettiest girl at the running games.

We slept alot that night because we were so tired.  That always makes Mommy happy when we sleep good and don’t get her up in the night.  It was a good day!!

Come back to see more pictures and stories tomorrow, because the next day had more fun. (and a little scary parts too I think!)

After a long ride…FUN!!

Before we forget to say it… Happy Birthday, GGJM!!! We love you!!

We are having a great time visiting Miss Karol and her family.  They like to play and we got to do some fun new things.  I’ve got lots of pictures and I’ll show you some soon.  Did you know that horses are SO BIG???  I’ll tell you about that later.

But since Grandma C and Grammy liked our movie the other day, we’ll show you one that Mommy took of us yesterday after we got to our room where we’re sleeping.  Me and KiKi LOVE to play on the bed, but we don’t get to do it much because sometimes we might get hurt.  But Mommy let us play for a few minutes… you can see how much fun we had.

Make video montages at www.OneTrueMedia.com

Playing in the sun

Yesterday we went outside in the front yard to play a little bit.  It was really nice and sunny, and we didn’t have to wear our coats or anything.  Mommy put some sunglasses on me that she got me when I was a tiny baby.   Since I have glasses for all the time, I have never tried them, but today we did, and I thought they were pretty cool!  They’re called Frubi Shades!  Funny name!


Mommy took some toys outside for us to play with.  I don’t like grass, so we had things that we could play with on the hard part.  I haven’t used my walking toy much lately since I can do walking without it most of the time, but I thought it was fun to play with it outside.  Mommy wouldn’t let me go for a walk by myself though…I kept trying to go where the cars go, so she made me turn around.

KiKi didn’t feel very good still, so she wasn’t wanting to play much.  And she doesn’t like the sun.  Oh, and she REALLY doesn’t like me to wear sunglasses.  She got very upset til I took them off.


But she finally found a flower that she thought was pretty, so she played with it a little while. 

I pushed her on my little bike with three wheels but we didn’t take a picture because Mommy was trying to keep us from tipping over.

We had a pretty good time, but we didn’t stay out too long.  It was pretty warm in that sun, so we went in and played the rest of the day.  But it felt nice to be outside a little!

Some answers for our normie

Just got back from the dr's office with KiKi. She has blisters on the back of her throat. Well, whatta ya know?! Something IS wrong! I'm relieved in a way, because this whole deal of the unknown is the most challenging to me. Dr. A also gave me a script for lactulose to help with her constipation too. Braska had this issue and did well on this med, so I'm glad she agreed to try it for Kinlee. Hopefully, if we can get those two things fixed (just pain support for the blisters) then maybe Happy KiKi will return.

I keep meaning to do a full post on this, but I'll just state it for now: "Everyone" seems to think kids with DS are hard work, but Kinlee is WAY more difficult and more exhausting and more frustrating than Braska has ever been in her almost 3 years. That doesn't mean we don't love her and enjoy her differences, of course, and there are rewards, but for the record, normies are no cake walk either in my book!

(Just to clarify our "normie" and "Downsie" terms... they are terms of affection given by M to the girls. Nobody is claiming they're PC, but if you've been around us AT ALL, you'll know that's not really a forte of ours anyway. So don't be upset... I kind of see it like calling a roly poly baby "chubkins" or "our little Michelin baby" or whatever. There's only love there, people. )

Feed them and they will grow

Ok, so this might be so not exciting to most people on the planet, but my kids are gaining weight. In our house, that's SOMETHING!

When the girls were weighed on Friday, Kinlee was 9 lb 3 oz. Less than 5 weeks old, born at 7 lb 6 oz. What?!? How does that happen? Maybe that's normal to some people, but not for us. I weighed her THREE times just to be sure it was right. I can't believe she's gaining that fast. Braska was at least 2 months, closer to 3 when she got there. She was 11 lbs at her surgery at 3 months after us stuffing her with tube feeds. Then she was back to 10 lbs at 4 months, 15 lbs at 12 months.Which brings us to the next bit of info....

Braska was 22 lb 1 oz!!!!! That's crazy! This from the girl who gained only 4 lbs between her first and second birthdays. 3 months ago she was just shy of 20 lbs, now she's over 22?

I suppose it's about the intake...go figure. Kinlee is eating like a champ, though I didn't think nearly enough to gain that much. And Braska has still been eating her few tablespoons of food a couple times a day, in addition, of course, to her regular tube feeds of Pediasure. But her few tablespoons add up to some decent calories, sometimes 30% more calories in a day, so it's making a difference!

Crazy. Just amazing. But we'll take it.

She's here!

Kinlee arrived this afternoon. She's a peach of a little girl, long and skinny. Things went well, and there are details and pics on her blog at

http://kinleecarene.blogspot.com.

Thanks for all your prayers and encouragement! We're doing very well so far!