Thursday, February 27, 2014

life with lily

I was sorting through photos in my lightroom library just now, and I found a few of my favorites that I realized I hadn't shared.

And then I thought about the fact that I haven't really written much about Down syndrome specifically in awhile on the blog... I guess because it doesn't even find itself on my radar most days..






...but today I'll devote a post to it. Just because.



Lily is four years old right now... in some ways we are seeing the gap widen a bit as far as her "abilities" go. Here's what she can't do (yet) that perhaps a lot of four year olds are doing right now :

Get herself completely dressed independently.  She tries, oh does she try. This usually results in her pants pulled halfway up, over several pairs of her siblings' chonies. (If you're not from the southwest, chonies = underpants.) She can pull a shirt over her head, and maybe get an arm stuck in a sleeve or two, unless it's a loose shirt. She's great at putting shoes on if they're not too tight, but it's 50/50 as to whether they will be on the right feet. But that's pretty on par with a typical four year old, so props to her for that, right ?



Run. She has a lightning fast walk, that almost resembles a run, given how fast her little arms are working to propel her forward. And I guess you could almost call it running, based on how quickly she gets to where she wants to go (usually away from me if we are in a public place and she wants to disobey... she thinks it's funny.) But as far as a knees-in-the-air, full-on RUN... this is not happening quite yet. Probably a good thing, given her love for darting away from me while laughing hysterically, as mentioned a few sentences back.



Speak in complete sentences.  More on what she can do as far as speech in a minute, but a complete sentence such as "I have to go potty" is still something we're working on with Lily. Which leads me to...



Going potty in the toilet. We attempted potty training one year ago. We saw a teeny tiny microscopic bit of success, followed by absolute zero success. If you're a mom who is into being mommy-trained (taking your little one to the potty every twenty minutes a day) then kudos to you. I just don't have the time or desire. We tried again to potty train a few weeks ago...I say that in the loosest sense of the word. With six children to homeschool and a verrrry full plate, I don't have three days to commit to the "three day method" or anything else that resembles strict adherence to a Plan For Potty Training. I spent a few days letting Lily wear chonies (her own, not her siblings) and set the timer somewhat regularly... I employed all the tools we used with previous kids to see if she was ready for potty training, to no avail. Lily is a smart cookie- she gets that she's supposed to "try" when she's sitting on her potty. She makes the appropriate faces and grunts (pretty funny to witness) and she claps for herself and grabs a chunk of tp to finish the job... but there's nothing in the potty to actually validate all the clapping and wiping going on. Five or ten minutes after we leave the bathroom, inevitably, there is a trail of pee following her down the hallway or wherever she is playing. And she's oblivious. She doesn't even look down to see what is flowing from her chonies- and when I call her attention to it, "OH !! LOOK, LILY ! PEE PEE!" she stares at it blankly, and does not seem one bit motivated to get it off her legs.

All of this to say- I don't think she is ready for this quite yet. I'm not frustrated, or concerned, because every mom I've talked to who has been down this road with a child with special needs, encourages me that she will get there. I'm just not into putting a million minutes of effort towards something that she's not ready for right now. We will try again this summer, perhaps, but for now we are giving this area some time.




Sooooo... onto what Lily can do, as a four year old with Down syndrome. I'm sure I didn't exhaust the list of the "can'ts", but those that I listed were the significant ones, I think. This list will be much longer, because that's what we're observing about Down syndrome right now- there seems to be a wider gap in the "can't" section as far as when she will hit those milestones.  But the things she can do ...  well, take a look...





At four years old, Lily can...

Feed herself independently. She needs no help at all in using a fork, a spoon, a sippie cup (she can drink from a regular cup, but I use sippie cups for all of my kids at age four - because I'm anal like that, and I don't like ANY spills on my carpet.)




Sit quietly and read a book. She may not be able to read the words on the pages...yet.. but she makes up her own, and points to the pictures to describe what she sees. She carefully turns pages and takes time on each one before moving on to the next. She typically has her baby doll sitting on her lap as she does this, and often pulls a blanket over the both of them to ensure coziness during reading time. Yesterday I found her lying on the stairs, head propped on a pillow, blanket draped over her little body, laughing and reading one of the kids' books to herself. Every now and then she would chuckle and say "oooohh gosh!", so I knew whatever book she was devouring was a good one.





Climb up onto and down off the couch, the bed, a chair, the stairs.  For the most part she has no problem getting where she wants to go. She is very adept at grabbing onto the sheets and pulling herself up onto our bed, which is several feet off the ground. She can climb in and out of Hayden's co-sleeper with no problem. She loves to climb into cabinets if they're left open, or hide herself in any little cozy spot she can find.




Let the kids know when she wants in on their fun. If they go in their room and shut the door, she is sure to follow - knock loudly - and yell PLEEEEASE at the top of her lungs. In fact, as I'm typing this, she is knocking on the door that leads out to the garage where the kids are, yelling "GUYS ! GARAGE ! PLEASE !" Girlfriend can't stand being left out.


Pack her things up when it's time to go somewhere. If we are headed out the door, you can be sure Lily is grabbing her purse (or two or three) and her baby doll. She might also have a book tucked under her arm, a blanket for her baby, and a set of keys shoved into one of the purses. She is very aware that we take things with us when we go places - if I'm hurrying her out the door she will usually yell OH! if she's empty handed, and run back into another room to retrieve whatever she deems necessary for the trip. If we are at church and announce that we're leaving, she does the same thing- grabs whatever items the kids have left behind on our row of chairs, and toddles out the door efficiently. If I forget something- like a hat or a sippie cup or a Bible- she is quick to remind me. "Mama!" she will admonish me - "HERE!" She is pretty bossy when it comes to not leaving things behind.



Clean up. I can't even begin to tell you what a good cleaner upper Lily is. If she's in the nursery with me during church (I only let her go in when it's my turn for nursery duty) she looooves to clean up the toys. She usually does this on her own, without me singing the "clean up clean up everybody do your share" song... for instance, if we just played with legos and the kids move onto books, she is all about making sure every last lego is back in the box before she picks up a book. If the kids are sprawled out amongst a kajillion toys, and pulling new ones into the mix, she is the diligent mother, stacking books into bins, and piling old toys into plastic tubs.

She is especially good at micromanaging Hayden when he's making a mess of her toy kitchen at home. "LILY!" she will yell at him (yes, she calls him Lily.) "NO NO! lalalalalalalala NO!" as she yanks the wooden dishes out of his hands to stack them neatly in the oven. She's quite bossy with her stuff.





Tell us what she wants. While Lily is not speaking in full sentences with subjects and prepositions and all the in-betweens right now, she DOES know how to communicate her needs and wants to us. here are a few examples...

"Mama! Cheerios, please!" (repeated 12 times in a row, just to make sure I heard.)

"Sissy! Go ! Me!"  (said in the most pathetic tone, with her little pointer finger stabbing her own chest repeatedly. "ME!" means- don't forget about ME !!)

"Mama, wa-wa, PLEASE." (she wants her sippie with water in it.)

"OOOOH ! POOOPOOO !"  before, after or during the fact. And don't let this declaration fool you about her ability to be potty trained. We do try to accommodate the poop sentences, but pee is a whole different ballgame.

"Daddy ! Please ! Up!"

"JonJon ! Lily, garage !" (take me with you into the garage)

When I asked her what she was doing in here...




...she answered, "Car. Baby. Purse. Go."


When we offer her something she doesn't want, she replies, "NO. No want it."

When we offer something she does want, "YES !" perfectly articulated .. or "BABY, YEAH !"  (probably because she hears her siblings say YEAH BABY all the time :) )

And more sentences...

"Mama, please - shoes ?"

"Babby (Abbi) - read ? Book ? Please ?"





She can also ...

name everyone in her family

point to all her body parts and name them

answer questions like "who is going to be at church today ?"  : Koa, MoMo, Bella, Brock...

say sooooo many words :garage, car, book, cheerios, baby, read, milk, cheese crisp, boat, car, cake, cookie, go, yes, yeah, what, pretty, yay, yellow, green, blue, ball, brownies, mouth, birdie, bath, shoe, sock, cards, teeth, eyes, nose, hair, ears, toes, cat, dog, mirror, daddy, mama, sissy, no, tree, please, thank you, pants, purse, keys, dress, doll, ouch, hot, cold, sad, cry, and at least fifty more I'm forgetting.

follow directions...if you ask her to get a diaper and the wipes for Hayden, she knows all the places to look. If you tell her to go get her shoes, she does it. If you ask her to throw something away, she leaves the room and does it. If you ask her where something is, she will go find it. If we give her something and tell her to "go put this in sissy's room" or "go hand this to Caleb" she knows exactly what to do.


give the sweetest kisses in the world





Some funny/cute things she does :

as mentioned, calls Hayden "Lily." all.the.time.

claps her hands and sings during worship at church

raises her hands and sways to the music at church

adores Norah, her niece, but ignores Hayden, her brother. Unless he's touching her stuff. Then she is the bossy mama.

loves to sleep with her siblings

always sings to and rocks her baby dolls

loves for Daddy to brush her teeth or brush her hair...cries when anyone else does it

her favorite sibling is Noah. It was her first word, and she ALWAYS wants to show him things. "NOAH !!!" we hear her yelling all the time...she has him wrapped around her finger.

Koa is her best friend. She absolutely lights up every time he comes over. If we tell her she's going to see him she yells KOA with the biggest smile on her face. They have the sweetest relationship ever- he talks her language. He'll ask her a question like this - "Lily- lalalalala?" and she bursts into laughter. He asks her what she's doing and she answers" Book ! lalalal!" and they laugh together. Cutest thing ever.





So there you have it. Life with Down syndrome as we know it right now. In some ways it's very typical to life without Down syndrome, in some ways not so much. I realize that for other families, that extra chromosome means more health issues, more visits to the doctor, etc...so far Lily has been the healthiest child we've had. She has the easiest temperament, and she is the happiest among us on any given day. She has her grumpy, stubborn moments, but they are few and far between - and she bounces back more quickly than any of her siblings.

I'm sure the future will hold many challenges, but for now we are just enjoying the day to day with Lily...




..which is a pretty wonderful thing.

22 comments:

Jenny said...

Loved this :)

Becca said...

I LOVE this post, Patti. Ohhhhhhh, she could NOT be more PRECIOUS!!!! Love the pics, love her spunkiness, love it all. And about the potty training, you're absolutely right - she'll get it. She's on the right path, and when she's ready, she'll do it! Probably on her own. That photo of her reading on the stairs - my favorite of all. <3

Amy said...

Such a bright little star :)

Jennifer said...

Great post! Love reading about Lily! :) Would love to chat with you about your school plans for her at some point. Will you homeschool Lily? With an IEP? PDP? We are still trying to figure out exactly what we want to do with our girls - and with Oregon's homeschool laws/regulations it's not super easy! :P Shoot me an e-mail or something one of these days! (you know, in all your spare time...)

Mariska said...

Thanks for sharing. She is adorable and quite smart. My little girl with Down syndrome will be three in a few months, and it's exciting for me to see how much progress Lily has made with speech in the last year.

I remember looking at pictures of Lily mothering her babies about a year ago and wondering if daugther would be doing that also some day. And sure enough, now, she is a little mommy to her babies, and likes to feed them etc.

My little one signs some words, and attempts to say some, but not a whole lot yet. So seeing how much Lily has learned this year is extremely encouraging!

Faith Kopp said...

My cheeks are hurting from grinning. What a super post. All our tears and fears were for naught. xoxoxoxoxoxo

kate kopp said...

So sweet! Yay Lily for all you CAN do and kudos to the family for supporting her as much as they do. And also especially to you Patti for focusing on the Can Dos and trusting it will be ok. It is and will always be. I love her sweet spirit! Special big hugs to Noah too!

Mary said...

Such a happy post to read! YAY Lily! You are doing great. I love that she calls Hayden "Lily" it must mean she knows to use as a title for one you LOVE!

Donna said...

Thank you for sharing your little Blessing with us. She is such a cutie as well as your entire family.

cara said...

LOVE reading all about Lily and everything she is doing!!! Benji is reading right beside me not taking his eyes off of Lily, of course. I love how she cleans and how she takes things with her when you all are leaving. Benji is now beginning to clean his toys really well. I am enjoying this! :) I am hoping Benji follows in her vocabulary soon too. I love how well she is communicating. It is strange; I have heard that some people have kids with Down Syndrome that also say they are their healthiest children. And then others that struggle with their health. Benji is doing really good, but his immune system doesn't seem as strong. He has been on antibiotics since like October! :( We are praying for a break from this. But grateful for how well he is doing. He keeps getting strep.

We don't think about Down Syndrome so much either. He is just our Benji. But I still have to say that the extra chromosome makes them a bit extra cute for sure!!!! Lily is growing so much. Beautiful girl! xoxo

Katrina said...

Love all the cute pictures of Lily. She is growing up so fast.

Crystal Kupper said...

I enjoy these occasional updates on Lily's progress. Keep 'em coming! :-)

linda said...

Hi Patti! I loved reading about Lily and all that she can do. I am so happy that you rejoice in her accomplishments without worrying about the "can'ts" She will get it, I know you know that. Her cleaning up reminds me so much of Stacey....seriously, she has things that she won't let any of us do because she considers it her job. It's all good!

Anna Theurer said...

Love the Lily update! You just described our potty-training experience to a T. I am told that she will get there and I believe she will. Just takes a little longer :)

Kathy McElhaney said...

Loved everything about this post. The sunglasses sassy pose is so adorable!

Kelly Marin said...

Love Lilly and all you guys, this was such a happy tears post

Kathy McElhaney said...

Patti,
I read this story on USAToday this morning and immediately thought of Lily.

http://www.usatoday.com/story/news/nation-now/2014/02/28/cheerleader-down-syndrome-inspiration-nation/5893363/

Chris6h said...

Lily is doing VERY very well!!! She is really only mildly delayed. And she is soooo dang cute!!!

Raelyn said...

Patti....
Good afternoon to you!! I discovered your Blog a little over one month ago, and was immediately hooked, but am just now commenting.... ;)
Lily is beautiful!! Actually. My phrase for "special needs" children is Beautifully Unique!! And Lily is just that!! Beautifully Unique!! ;-D
We have several things in common, you and I. I, too, am a church-going Christian. I was homeschooled which is easily my parents' best decision they ever made. And.... I have a 21-year old brother who has Down syndrome!! He is my best friend, we share everything with each other!! Thoughts. Feelings. Interests. Each other's rubber croc-like shoes. My brother and I have twain incredible things in common. One. We were both born with life-threatening birth defects {Mine was congenital diaphragmatic hernia. {A hole in my diaphragm} And also craniosynostosis. {No soft spot} He was born with multiple holes in his heart. {We are "holey" siblings!!} That being mentioned. He and I share surgically-created scars!! We both have always found this to be pretty cool!! The other thing that my brother and I have in common? We both live with "special needs"!! {Or learning disabilities, if you do not mind that phrase!! I am not, in any way, shape, or form writing it negatively!!} My brother constantly amazes me!! As I am not known around the Blogmosphere {Is that a word?} for short comments, I will close this and read your post!! ;)
One more thing. You sing the "Clean up, clean up everybody everywhere, clean up, clean up everybody do your share" song!! From "Barney & Friends"?! So did we!! ;-D
--Raelyn
PS. Lily sounds very smart, like my brother!! ;)

nicole said...

"Oooohhh gosh" she's so cute!

Kiara Buechler said...

Oh I love her! I really enjoyed this post.

Our victory! said...

I loved this post! Thank you patti!! My daughter is 2 months old, and like you said future will hold many challenges.. But right now I'm loving every single day with her.. She's our little angel from heaven!