The oldest sister

May 2, 2012 at 9:34 AM by Susanna    31 Comments »

Question:   Does Laura feel like she has to be the miniature mother while her mom is pumping, going to appointments, doing therapy?

Answer:  No.  I feel like the big sister who can help when the mom can’t.

I like to go along and help when the little girls have doctor’s appointments.  We just have a few appointments once in a while, anyway.  Not very many.  And mom isn’t pumping anymore.

What I do every time a therapist comes is listen and watch and learn and sometimes help.  I get to count that for school.  Other children work hard at other activities like sports, and I work hard, too.  I’m not very interested in sports.  But I’m learning different things like how to do therapy and how to put an NG tube in.  I like learning how to do these things, and I like knowing how to do them.  I also enjoy teaching them to other people.

Before I had little sisters with special needs, I didn’t…

…have to clean dirty faces,

…have to change stinky diapers,

…have to go to therapy sessions,

…have to be wakened up in the middle of the night by little children like Verity and Katie did to me for a while when Katie first came home,

…have to take so long with activities like mealtimes,

…have to do as much laundry as I do now (laundry is my daily chore),

 

 

 

 

 

…have to miss a special event like my cousin’s wedding in Virginia,

…miss going on a family vacation like we did last year when we were adopting Katie.  We had enough money to go, because it doesn’t cost very much, but we didn’t want to because other people were giving us money for the adoption, and we didn’t want to spend money on a vacation.

 

Now that I have little sisters with special needs, I still do things like…

…have Family Night every week,

…Girls’ Night every month,

…take turns going with Dad on errands like grocery shopping,

…go clothes shopping with Mom,

…take fun trips to the Franklin Institute, the North Museum, Landis Valley Farm Museum, the Pennsylvania Farm Show, Sight and Sound, and Longwood Gardens~

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

…go on family vacations (we’re getting two this year),

…Game Nights with friends,

…spending time with friends,

…celebrating holidays with my grandparents and cousins,

…watching Courageous in the theater,

…hymn sings,

…family campfires,

…writing letters to my friends,

…baking,

…reading books,

…riding bike,

…climbing trees,

…photography,

…art lessons and drawing pictures,

…acting out imaginary stories,

…origami,

…tea parties at home or with my grandma and girl cousins,

…piano lessons,

…playing at the creek,

…picnics,

…hiking,

…frisbee, baseball, and volleyball with my older brothers,

…having Dad read to us every Sunday night until it’s very late,

…learning English country dances, like you can see our family doing here and here,

…playing Mafia and Four on the Couch with my family and friends,

…playing games like Settlers of Catan, Apples to Apples, Scattergories, Scrabble, Loaded Questions, Boggle, and Pictionary with my family,

…hand sewing and latchhook,

…stamping and making cards,

…doing other creative projects like this~

 

 

 

 

 

 

 

 

 

Because I have two little sisters with special needs…

…I don’t think people with disabilities look strange, like I used to.  Now I’m more used to them, and I’m excited if I see them in public or on a video.

…I’m not afraid of doing things like cleaning goopy, crusty eyes and noses, learning to put an NG tube in, or taking Katie to the bathroom.  I am glad God put Verity and Katie into my life to teach me not to be grossed out when I see that kind of thing.

…I feel protective of them and don’t want people to think bad things about them because they have Down syndrome.

 

…I have learned so much and it will be good for me when I grow up.

…God showed me what I would like to do when I grow up.  I would like to adopt as many children as I am able–children with disabilities.  I adore children with Down syndrome, and I am sure if I adopt children with other disabilities, I will adore them, too.

 

The love

Verity and Katie are so sweet!

Babies who have Down syndrome have low muscle tone, and they melt onto you like butter.

Now that Verity knows the sign for love, she uses it a lot.  Verity has a few different ways of telling us that she loves us, and that she wants to cuddle with us.  She hugs and kisses and pats and signs “love” and says “wuv-oo” for “I love you.”

Katie can’t do any of these things except for patting, but we can tell which people she really loves.

The girls are both very cuddly and sweet.  Sometimes when they’re next to each other, they will both reach over and pat each other.  It’s really very cute to watch.

When I write all this down, it seems like the love is just a little part of the whole story.

But really, the love is all through everything and it’s there all the time.

~by Laura, almost 13 years old 

 

Note from Laura’s mom:

I am so grateful to the Lord for putting Laura in our family right where He did.  She is sweet through and through and doesn’t seem to mind doing anything she’s ever asked to do.  I have to guard her free time, because she is so uncomplaining and undemanding.  Here’s a little anecdote that sums up her attitude toward her life with her little sisters–

Recently, I was explaining the next day’s plans to the children and handing out their assignments.  Katie and Verity both had complete hearing exams scheduled.  I told Laura she’d be going along with me to the Clinic to help, and she immediately responded with glee, “Oh, goody!!”

 

 

 

 

 

Wee little update…

April 29, 2012 at 4:36 PM by Susanna    36 Comments »

…on our wee little Verity!

Less than two months until she’s two years old!

She’s wearing eighteen-month to 2T clothes now, but she seems so petite to us in contrast with Katie.  She’s still wearing a size three shoe, while Katie’s feet have gone from a size two to a size five.

To think I worried that Verity was overweight when I got home with Katie!  Back then, even weighing a pound and a half less than she does now, Verity looked so huge and chubby next to her frail sister.

Remember this video?

 

More than a month ago, Verity learned to put herself up to a standing position from the floor, balancing on those tiny feet.  I hope to capture it on video some day soon.

Now she’s learning to shift her weight to one foot or the other, so that she can learn to walk.

“Dance, dance, Veri-ty, back and forth, side to side!”

We’re curious to see what comes first, her second birthday or her first independent steps.

 

For months now, she’s been able to put her glasses on quickly without help, and it is the cutest thing to watch her tiny little hands doing it!  I’ll have to capture that on video also, one of these sunny days.

We can fold the glasses and put them into her lap, and she’ll open them up and turn them until they’re in the right position, then put them on.  If they don’t go on perfectly the first time, she’ll try again as many times as she needs to.  We are so proud of her perseverance.

She is so very far-sighted that the glasses enable her to see the world around her, and she likes that.  Most of the time she ignores her glasses, but she whips them off and pitches them in a flash if they’re dirty…

…or if she’s irritated about something else, as if to say, “That’ll show you!”  Uh, yes…we’re working on that one.

 

Hmmmm, let’s see…

She wakes up bright and cheerful in the morning, but refuses to open her eyes until she decides it’s time to stop sleeping.  She will even lie there talking with her eyes still closed.

She knows what a potty is for and is exceedingly proud of herself when she uses it.

Speaking of which, her constipation issues caused by her low muscle tone were so persistent that in addition to probiotics and dietary measures which weren’t effective enough, we now give her fruit-flavored sodium docusate liquid.  Commonly known as Colace, and also given to her sister Katie.

Both she and Katie have had constant upper respiratory congestion since I stopped giving them my own milk.

Verity does like her almond milk smoothies.  (We’re still not giving her dairy products.)  We’ve discovered that almond milk is very simple to make with the proper tools.  I add a pinch of salt, dates, and a little vanilla.

We also give Verity vitamin D, fish oils, ginkgo, and grapefruit seed extract.

She’s increasing her sign language repertoire, and it’s not stopping her from progressing with verbal speech.  She is willing to attempt to mimic many words, but doesn’t usually use them without encouragement.  It gives me great joy every time she imitates a sound or word.

Her little body is meltingly soft and there are no better hugs than Verity-hugs.

When she needed help refining her pincer-grasp, at the suggestion of her occupational therapist we began putting her puffs or raisins into a mini muffin tin.  Ideas that work are the best!

She can accurately stack the rings on her ring-stacker, and carefully build block towers.

She’ll pick up her socks and try to put them on her feet, and loves to help put her shoes on.  She puts her feet into her pant legs and helps to pull them up.  She knows that barrettes and hats are to put onto heads.

 

She can put a hat properly on her own head, and says “hat” if she notices someone else wearing one.

She defies the persistent stereotype that people with Down syndrome are always happy and love everybody.  She can be grumpy with the best of them, and gives the evil eye to strangers that get too close to her personal space.  She shows no propensity for habits of indiscriminatory affection.  Far from it.

 

A specialist who works with children with disabilities recently spent some time observing her, and then asked me, “Does she have any delays?”

Delays?

Yes, we definitely see her delays and difficulties in learning.

I picture her brain as if it’s surrounded by two hollow balls, one inside the other, both with holes that have to be lined up correctly in order for something to get from the outside in.  We can easily tell when the holes are misaligned, and she’s just not receiving the information.

It’s just as easy to tell when everything’s lined up so she can take it all in.  When that’s the case, her response time is quick as lightning.

We have to work to get her attention, and then give her input, input, input, in the way she can best understand it.  We also make sure she and Katie get their ginkgo every morning, as this makes a noticeable difference in their ability to focus.

 

But in so many ways, Verity is just like the nine other toddlers we’ve had.

She is playful, inquisitive and on the move, gets into things and makes messes, is determined to let her voice be heard, puts all kinds of things into her mouth, throws all her stuffed toys out of her crib, loves being read to, has to be watched so she doesn’t crawl up the stairs, doesn’t like to hear the word “no” unless she’s saying it herself, and makes us laugh every day.

 

I was face to face with her, demonstrating the hard “G” sound.  She had recently said it for the first time, in the word, “Go!”

I exaggerated the sound, showing her what my tongue was doing back there, repeating it again and again.  I told her, “Verity do it!  Verity say, ‘G, G, G!’”

She watched my antics solemnly, giving no other response.

After a good five minutes of trying to no avail, I went on good-humoredly to brush her teeth and wash her hands and face.  Then thought I’d try again…

Mama:  Verity…

Verity:  G, G, G!

 

You are such a little doodle-bug, Verity.  And I love you so much I can hardly stand it.

 

As I handed you to Daniel this morning, he said, “It’s hard to believe some people wouldn’t want her!”

 

 

 

 

 

Questions for Katie’s siblings?

April 28, 2012 at 7:35 PM by Susanna    13 Comments »

As part of our Straight Talk series on special needs adoption, I am working on a post about siblings.  I asked our older children if they would be willing to write, and not surprisingly Laura began her essay right away. <grin>

Both of our oldest boys, ages 18 and 16, offered to answer questions directly.  So if you’ve ever had questions you’ve wanted to ask our older children about having two little sisters with special needs, or about adopting Katie, you are very welcome to leave a comment on this post.  All appropriate questions will be considered and answered to the best of Joseph and Daniel’s respective abilities.

Thank you so much, friends!

 

Oh, and a P. S. too:  ONE WEEK until the Big Families and Friends picnic!  See link on sidebar for more information.  For picnic location, please email susanna@theblessingofverity.com.

 

 

 

 

 

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