Celebrating our bookworm

I love my kids’ birthday parties. I love planning them, I love watching everyone enjoy them, I love the photos and memories afterward.

The theme for Lina’s 4th birthday party pretty well chose itself. You’ve never met a kid who loves books more than she does. A quick Pinterest search dug up a fantastic PBS resource for a book party, and we were off and running.

Lina understood what was happening much more this year. She talked for days about who was coming, and a party is just the thing for a girl who loves to be the center of attention. She loved the birthday song and blowing out her candle. She was able to do more with opening gifts, though she still needed lots of help. We served some of her favorite foods, and let me tell you, girlfriend can put away some chocolate cake and ice cream.

But enough talk. I’ll let the pictures tell the story.

img_0819-1

img_8028

img_7893

img_7895

img_7886

img_7900

Story time with the Village People

img_7916

img_7922

img_7927

img_7928

img_7944

img_7980

img_8021

img_8042

img_8049

img_8056

img_8061

Trying out a birthday present

img_8064

img_8066

Anyone who’s seen Corin in the past couple days will have noticed his massive black eye. This is the exact moment of origin.

img_8069

 

Three for one more night

Tonight, for the last time in my parenting experience, I put a three-year-old to bed. Tomorrow, she will be four, and the girl who just weeks ago would rarely put two words together will hand me a book and say, “Mommy, help please. Read.” She will be excited for school in the morning, and when brother is too slow, she will yell up the stairs, “Corin! Come! Backpack! Bus!” She will belt out her made-up songs and dance with her reflection in the glass door. She will count to five or maybe even 10, and she might play hide-and-seek with brother. At some point, she’ll inevitably yell in astonishing volume at the unlucky soul who has crossed her purposes. She’ll laugh at silly faces and sibling antics. When she’s sleepy, she’ll rub my hair and suck her fingers and let me feel, just for a minute, that I have a baby still.

Tomorrow, she will do the million things she does every day to light up my world. But tomorrow, she will be four, and she will be just a little taller and just a little stronger and just a little wiser, and she will need just a little less of me. And I will be so proud and also sad, because I’m a mother, and it’s what we do.

Sleep well, baby girl. Another year begins tomorrow, and there are new worlds to conquer. I’ll be here with you, but just a little further back than I was yesterday.

img_7779

First day of preschool, year 2

On Monday, Lina returned to her much-loved early childhood preschool, where she attends four mornings a week. (Yes, I am four days late with this post. My poor youngest got the short shrift of a very busy week.) She was so excited about going back that she spent most of the drive singing, clapping, cheering, signing “school” and saying the names of her teacher and therapists in succession. By the end of her first day, she had learned the names of half her new classmates. She’s the old pro this year, and the staff tell me she is happy to boss everyone else around. Her speech therapist is ecstatic with the speech development she experienced over the summer. She has a new OT who I think will be wonderful, but it’s otherwise the same team as last year, and we are so excited to watch her progress unfold over the year.

IMG_7777

From the classroom open house on Friday morning

IMG_0787

First full day and ready to go

IMG_0788

13900190_10155098221844745_5088795064837644994_n

I am so grateful for the bond these two have developed over the summer. They sometimes drive each other crazy, as all siblings do, but they have had so much fun playing and laughing together. 

 

Obligatory first day of school post

We have been busy over the last few weeks trying to soak up the last bit of summer. We spent a week at family camp, enjoyed time with friends from out of town, and yesterday closed things out with a pool day and dinner out. Photos of some of those things are forthcoming, but for now, we mark Corin’s first day of the new school year. (Lina had a brief open house and will have her first day on Monday.)

Temperatures outside are still sweltering, but here in the South, we head back to school in August. The lead-up is a little bittersweet as I mark another milestone in my kids’ lives, but there really is something awesome about the first day of school. It has that shiny freshness of a new beginning, with the pent-up anticipation for all that lies ahead. My son’s nervous excitement does something to my heart as he marches off to conquer this newest world.

Happy first grade, Corin!

IMG_7748

 

IMG_7754 (2)

IMG_7756

Corin feels it’s very important for everyone to know that the dinosaurs on his backpack glow in the dark.

IMG_7759

IMG_7764

Drop-off was a whole new experience compared to last year’s delayed start for kindergartners. Mostly, this year involved a lot more walking.

Version 2

Straight to business, with barely time for a smile

 

In lieu of keeping up with baby books…

I’m really not so good at blogging. I’m pretty sure one of the top pieces of advice for would-be bloggers is, “Post often.” Oops.

I thought it might be time for an update on both kids. What I mean by that is, I’ve had an attack of guilt over my failure to record my kids’ milestones and development. Lina’s baby book is pretty much blank, and I am terrible at remembering when things happened for either kid. So, here’s my attempt at a snapshot of the Sharp kids at 6 and 3 1/2. As this is mostly for my own neglected record, feel free to skim or ignore completely.

Corin:

13096335_10154797060639745_3574072658016804606_n

His first time ice skating, a trip we promised as a birthday gift

  • Reads pretty proficiently but still prefers to be read to. We recently finished The Trumpet of the Swan by E.B. White, which he loved.
  • Just lost his fourth tooth last night. It was, by his account, kicked out by his sister. He appeared in the kitchen holding his tooth, with a muddled tale of Lina kicking at something but instead hitting his arm as he wiggled his tooth. On a related note…
  • Knows I am the Tooth Fairy. I do not confirm or deny, but he is unshaken in his conviction.
  • Has an incredibly vivid imagination. He is almost always deep in some fantasy. We are all assigned roles in his games on a daily basis. Yesterday, we were giant robots. We’re regularly super heroes, any variety of animals, pirates, Star Wars characters, and the list goes on. He spins wild tales of grand fights and adventures, and there are always good guys and bad guys. Sometimes the good guys win, sometimes not.
  • Loves macaroni and cheese best of all foods in the world.
  • Also loves scrambled eggs, spaghetti with olive oil and parmesan, pizza (no mushrooms!), crunchy bean tacos, yogurt, veggie “sausage” links, applesauce, bananas, pears, Wheaties with milk, hummus and cheese sandwiches with pickle and lettuce, and for treats: brownies, cookies, M&Ms and ice cream.
  • Eats most vegetables and fruits pretty well.
  • Is very affectionate and gives lots of hugs and kisses and “I love you”s.
  • Wears size 6 clothing, though the pants are sometimes too long.
  • Wears size 11-12 shoes.
  • Loves “specials” – library, P.E., art and music – at school, but also really seems to enjoy the classroom time. The days are long and he is very tired by the time he gets off the bus, but he loves his teacher and friends and has had a positive kindergarten experience.
  • Cannot carry a tune to save his life. This one has taken our musical family by surprise.
  • Is easily frustrated when things don’t go according to his (often very specific) plans. He likes to be in charge and often loses his temper when he doesn’t get what he wants when he wants it. We have spent a lot of time working on this, and I have a feeling we’ll be working on it for quite some time to come. My firstborn is strong willed and likes to have control. (I have no idea where he gets that.)
  • Has a pretty strong grasp of basic math, such as simple addition and subtraction and the very beginnings of multiplication and division.
  • Is very cautious by nature. This kid is not a risk-taker or diver-in. He is learning to overcome nervousness and fear to try new things, and he generally finds his footing with a little time.
  • Learned to ride a two-wheeled pedal bike over the winter/spring. He’s still a little hesitant with it, but he’s getting there!
  • Loves his sister and sometimes plays well with her but often gets terribly frustrated by her propensity for messing up his carefully ordered world.
  • Plays heavily with his matchbox cars and toy planes and also enjoys his train set, musical instruments (small guitar and keyboard), Legos, puzzles and dress-up costumes. He also loves to play board games.
  • Still sleeps with the lion “lovey” he’s had since birth. We recently gave away “new lovey,” an identical lion bought ages ago in an unsuccessful attempt to introduce an alternate. Alas, the original was already irreplaceable.
  • Loves the Cars and Planes movies.
  • Does his own laundry with some help.
  • Goes to bed at 7:30 p.m., gets up around 7 a.m.

 

Eline:

lifetouch_20160504164757

Spring school picture. It’s her, messy hair and all.

  • Has experienced a huge leap in her speech development over the past couple months. She has a vocabulary of hundreds of spoken words that grows daily, which means she relies less on signs (though she does still use them). She has just begun putting two or three words together. Her preschool teacher recently returned from maternity leave, and after her first day back, Lina was able to spontaneously tell me that she saw a picture of Ms. Meri’s baby on her phone. (I checked with the teacher to verify!) You can imagine my elation. Clarity is still a challenge, but we’ve seen progress there, too. She does not currently say “k” or hard “g” sounds.
  • Can climb and descend the stairs independently on her feet, holding the railing. Can jump with both feet off the ground and kick, throw and sometimes catch a playground ball.
  • Loves her friends at school and adores her teachers, especially her speech therapist, Ms. Jody. She is very affectionate and gives fantastic hugs.
  • Has a very hard time with sharing and can get aggressive when someone is in her way or not doing what she wants them to. We are working on this one. She will still occasionally pull hair, but that issue is much improved.
  • Has a well-developed sense of humor. She loves silliness and laughter. Grandma was dressing her the other day and teasingly asked, “Are these the dog’s pants?” Lina thought it was hysterical.
  • Can be downright sassy. If she doesn’t want to do something, she responds with “No!” accompanied by a foot stomp.
  • Likes for things to be her idea. If she feels pressured to do something, she will balk. This girl is independent and very strong willed. She likes to test boundaries.
  • Believes the world begins and ends with books. She carries books with her everywhere and asks to be read to many, many times a day. She understands that letters make words and will point to each word to ask you to read it. She loves Bible stories. Her favorite is David and Goliath, which requires an accompanying song with all the motions.
  • Hates having her hair combed.
  • Knows all her capital letters by name and can name a few numbers, as well.
  • Adores music. Singing is the one thing that will unfailingly calm her in any situation, which has been true since she was tiny. She amused (at least I’m choosing to interpret it that way) everyone in the pews around us at church last week when she responded to a children’s choir song by shouting “Yay!” and clapping enthusiastically.
  • Wears 3T clothes and size 6-7 shoes.
  • Still takes a 1 1/2- to 2-hour nap every afternoon.
  • Goes to bed between 7 and 7:30 and gets up way too early. She is usually awake before 6 a.m. but thankfully plays happily (if rather noisily) in her room until someone comes to get her.
  • Loves bread (toast, waffles, rolls, cornbread), butter/peanut butter/almond butter and honey or jelly, veggie meats (both kids are very vegetarian!), spaghetti or noodles, string cheese, pizza, yogurt, goldfish crackers, applesauce, veggie straws, tortilla chips, avocado and most sweets. She sometimes tolerates broccoli, peas, banana, apple and pear. She usually won’t touch foods she doesn’t like or recognize, but her palette does seem to be broadening gradually.
  • Prefers mommy for some things but definitely prefers daddy for bath and bedtime.
  • Sucks the first two fingers of her left hand when she is sleepy or needs comfort, as she has since she was a few months old. She has a much-loved stuffed bunny (and an almost identical alternate – we learned our lesson!) whose neck ribbon she rubs. She also likes to sleep with a big stuffed bunny she got for Easter and sometimes her favorite baby doll.
  • Can draw lines up and down, across or in circles as requested and can operate scissors with some support.
  • Loves her Little People toys, nesting cardboard blocks, her babies, her little toy piano, dress-up clothes, shoes and hats (hers or “borrowed”), her little play kitchen and shopping cart/food, and did I mention BOOKS?!!
  • Receives one hour of speech, one hour of OT and 20 minutes of PT every week during school, in addition to support toward her goals from all her teachers and aides. We are so pleased with her preschool program and the progress she has made over the school year.

These kids light up my life. I always wanted to be a mom. I fought hard to become one. But not even all the years of longing prepared me for the hugeness of motherhood. The joy, the frustration, the exhaustion, the pride, the love…THE LOVE. It’s all so much bigger than I could have fathomed. Even when they drive me crazy, I thank God these kids are mine.

High five

IMG_5740

Lina had her final visit yesterday with her KidTalk interventionist. (I actually don’t know if that’s the official term.) KidTalk is a research program through Vanderbilt University’s Kennedy Center. It focuses on communication development for kids with Down syndrome or autism.

Based on positive reviews from other families, we enrolled Lina in KidTalk last year. She went through the initial evaluation to qualify her for the study and was assigned to the intervention group (as opposed to the control group, which gets the intervention after the research period is over). For the intervention, we committed to four appointments a week: two in our home and two somewhere in the community, which for us was GiGi’s Playhouse and an office at Vanderbilt. During those appointments, the interventionist worked with Lina on speech development using a very specific play-based methodology honed over many years of research. For this specific study, the team was testing the use of an iPad app as an additional communication tool. The in-home visits also focused on training me in the intervention methodology. In addition to those appointments, we also committed to periodic evaluations at the Vanderbilt offices to track her progress.

Lina began the interventions last June. It was a huge commitment. Honestly, the study, combined with Lina’s weekly standard therapy appointments (speech, OT and PT), pretty much ate up our entire summer. Rather than going to swimming lessons and the zoo, Corin, Lina and I spent our time ferrying back and forth to appointments. I’m not going to lie: it was hard. I was tired a lot. I worried about what it meant for Corin. But I could see Lina responding to the interventions. Her progress became apparent, and that kept me going.

From almost the day Lina was born, Jon and I felt that communication was going to be one of the most important aspects of her development. It was apparent very early that Lina was bright and inquisitive, curious about her world and eager to learn and explore. We also knew that difficulty communicating could keep the rest of the world from seeing what we saw. We were determined to access any help we could find to push her speech development. We thanked God that an infant hearing loss diagnosis (which proved to be temporary) allowed her to qualify for earlier speech therapy than the Down syndrome diagnosis alone would have. She saw a wonderful Vanderbilt therapist weekly from the time she was about seven months old.

And now here we were, slogging through a very difficult summer in the belief that it would all pay off, that all these interventions and research-based methods would give Lina the support she needed to push her speech development forward. Her final intervention appointment was in August. We have since been back to the Kennedy Center several times for periodic follow-up evaluations. The last of those was February 15th. We also received periodic maintenance home visits from our much-loved interventionist, Tatiana.

Lina’s speech progress has seemed pretty obvious to me. We estimate she now spontaneously uses well over 200 words and signs, and even just in the last few weeks, her vocabulary has been exploding. She delighted her school speech therapist just today by suddenly greeting her by name, as if she’d been hanging on to that trick for just the right moment. On the way home, I was serenaded with “Jodie, Jodie” and a wide grin. She busted out the word “railing” on the way up the stairs yesterday. Every day there are new words; I can’t keep track of them all. Her receptive language has always been well ahead of her expressive – typical for kids with Down syndrome, and one reason sign language works so well – but we’ve seen tremendous strides there, too. I can reason verbally with her in ways that seem pretty typical for any three-year-old. She can follow two-plus step directions (although her wildly independent nature sometimes interferes!). She can easily understand advanced “first, then” concepts: “I know you want to play blocks, but first you need to finish eating your apples.” “We can go play outside, but you need to clean up your toys first.” I’ve found I no longer need to focus on simplifying language and concepts for her to understand: She gets pretty much anything I tell her.

But having said all that, I still sometimes second-guess myself. What if I’m overestimating her progress? I know she’s still delayed compared to her typical peers. Are we really pushing her enough? Why is that one word sounding so muddled? The guilt sets in: I haven’t done any KidTalk play with her for days. I need to be working more on that.

You can imagine, then, how I felt when yesterday, on that final visit, Tatiana told me that she had compared Lina’s last standardized evaluation with her initial one. She said, “Lina gained five points on her score.” I had no idea what that meant; five points didn’t sound like much. But she went on to explain that they almost never see that big a change. They expect to see an overall increase in points, because children will naturally be learning and growing over the course of the evaluation period. But in order for Lina to see that kind of scoring gain, she had to show significant improvement compared to typical progress they would expect in that time.

I don’t think the news really sank in for me until I started telling Jon about it yesterday evening. I know all the flaws and problems with standardized evaluations. I know they are snapshots of a moment and place in time and not a full picture of any child. But right now, that measurable sign of progress means the world. It really is clicking; my kid is learning to talk. All the hours we and her therapists have poured into her for the past 3 1/2 years are paying off. Someday soon, the world will be able to hear all she has to say.

I wish I could bottle this feeling to share with parents who have just received a Down syndrome diagnosis. Yes, a lot of things are going to be harder. There will be times you’ve gone over the same activities 1,000 times to little response. You will all get tired. But then, victory comes. Right there in front of you is undeniable proof of the payoff, and it is so, so sweet.

Sure, I’ve always known that work brings rewards, but it turns out it’s taking Lina to really teach me the fierce joy of hard-won milestones.

IMG_5744

IMG_5753

IMG_5757

IMG_5778

Naptime shenanigans, or things that make me smile

The kids finally headed back to school today after blizzard 2016, which means the return to a more normal routine. I picked Lina up from preschool at 11:30, we drove home, ate lunch, and then I put her down for a nap. I headed into my room to catch up on emails.

I think she had missed her toys, because instead of going straight to sleep, I heard her talking quietly and rustling around. After quite a while of this, I thought I’d better go settle her back into bed. As I walked across the hall, I heard a pause, then rapid footsteps, then the squeak of her bed springs. As I opened the door, I caught her trying to shove a book under her pillow. She gave me a wide-eyed look.

Why am I telling this story? It’s no big deal, I know: just normal three-year-old stuff. But that’s the thing. It’s normal three-year-old stuff. To me, that experience represents exactly what a kid her age should be doing, and I can’t tell you how it made me (secretly) smile. When Lina was first born, I didn’t fully appreciate how much the “normal kid stuff” would mean, and the joy I would get from watching my girl lead her boisterous, everyday life.

I suppose that’s one of those things they don’t tell you when they deliver a diagnosis.