Bragging!

We went on a “therapy shopping spree,” at the Dollar Tree.

I just have to say that the BEST Dollar Tree in the world is in Lockport, NY. Every time I go to another one I am disappointed.

Anyways, we bought a ton o’ stuff.

Leah’s been having so much fun with it all.

All of this new stuff has just reinforced how smart my little pumpkin head is.

She has played “appropriately” with all of it, except the wooden beads because I have to sand the inside of them.

Even with those however, she tries really hard to get the string through the holes…

Leah’s speech is improving.

She is beginning to spontaneously verbalize many more words.

She signs and asks for “juice” or “milk” when she’s thirsty.

She signs and asks for “eat” when she’s hungry.

She makes the “yuk” sound when she needs a
diaper change.

(We are getting a potty very soon… had one in the cart today but I think I will wait just a few more weeks until I am ready to work on it with her)

She says “all done” when she’s done.

She says “please” when she wants something.

She says “hi” when she sees someone new…

There is a LOT more but I don’t want to bore everyone…

Leah is trying to jump now and we are working on strengthening her back muscles.

Leah’s core is VERY strong.

I think it’s all of those ball exercises we did to get her to learn to crawl, sit up, and walk.

But, her back is pretty weak and she slouches.

So back to the ball we go.

I’ve also been having her do over-the-head activities as well as wheel barrels to strengthen her shoulders…

I’ve been trying to save for an iPad for her but every time I get some saved, something comes up! :(

Yes, iPads are very beneficial for little ones; it is not just a Mama wish list item.

Hopefully that will come soon.

So if anyone has an extra iPad they’re looking to sell, give me a shout ok? :)

Leah knows (signs, says, and can pick out) the colors red, orange, yellow, green, blue, and purple. We are working on white, black, brown, and pink.

I swear Signing Times music is so helpful with teaching this kid. I don’t know what I would do without it.

Leah definitely has her favorites (Baby Signing Times, My Favorite Things, and Family, Feelings, and Fun) but they are all SO wonderful!

I honestly don’t feel bad letting her watch them more than once a day because the repetition is helping her a ton, plus they teach me the signs and I sing the music when we have Mama/Leah play time, it all just reinforces the skills and words.

Except now she’s learned to put the DVD in the ps3 by herself and sometimes she does it upside down when I’m out of the room!

(I never taught her this, I discipline her when she does it, but that darn stubborn Sones’ trait always comes through! ;))

So, see my baby IS a smarty pants.

I’m not just a bragger! :)

Mended Broken Heart

Last year several of my friends lost their children.

My heart was just broken for them.

And, it continues to mourn with them.

I’ve wondered why Heavenly Father would take these perfect babies, whether they were 3 or 12, into his arms and away from their parents.

Part of me was kinda angry at Him, for them.

My faith let me believe that there was a reason and that was all I needed, but I am positive my faith would’ve been pretty stricken if it was my child, just as it was when we received Leah’s diagnosis.

So…

About a month or two ago Elijah asked me, “What happens to kids when they die, are they grown up in their ‘perfect’ state or are they still kids?”

I told him I wasn’t sure and to ask his daddy or his Primary teacher if they knew.

I was so grateful for our church at that time, as I am most times, because of its encouragement to ask questions and seek answers.

This was definitely a question I was very interested in hearing the answer to.

Elijah came to me a few weeks later and said,

“Oh yeah mom, I asked Brother Durrant the other day that question about babies.”

-(By then I forgot all about the question)

-Brother Durrant is his Primary teacher.

“He said that when children die, their parents get to raise them when they get to heaven. So they might miss out on a lot of things on Earth but when they are all in heaven they do it together there, just better.”

Pretty profound, huh?

It definitely gives me comfort for my friends.

It’s just another reason why I love Heavenly Father so much, He always has the perfect answers for every situation.

I am also grateful for Elijah’s curious mind and how he was able to put my restless mind at ease with his curiosity.

Puzzles

I’m hoping that when school starts for the other kids, I will have more time to blog about our lives with Leah.


Don’t get me wrong, I do NOT want my kids to go back to school in a few weeks.


I love having them home and I can’t believe the summer is already over.


I will miss them terribly throughout my day.


But, I gotta start to try to find things to look forward to or I will become very sad.


I haven’t had much time to blog since we’ve moved.


To be quite honest, I haven’t blogged much in part because of time restraints and also because I have been tip-toeing around things I write.


When I can’t let it all out, I can’t write well. I’m a very emotional writer. So, take away the emotion, take away the writing.


I haven’t wanted to hurt any of my fellow Down syndrome mom’s feelings because of Leah’s abilities and her continued success.


I haven’t wanted to hurt my therapist friend’s feelings because I may come down hard on some of their colleagues.


I haven’t wanted to hurt my other kids’ feelings because I write so much about Leah and not them.


But it’s gotta stop.


I need to blog.


It’s great therapy for me and helps me process my part in Leah’s life much easier.


I also love the input and advice I get when I have a concern about her development.


I can’t have it both ways, so I’ve decided to put all of my guards and protective nature away, and blog with raw emotion.


It’s really the only way I can with any meaning…


…Leah’s therapists are okay.


Some are MUCH better than others.


One, we’ve only seen 3 times in 4 months.


Services are definitely not the same in a rural area.


I’m finding that Leah is having to reprove herself all over again.


In Niagara County, her therapists worked with her pretty much since birth, so they were able to follow her progress throughout her life.


So, even though her skills seemed so shocking and impressive, they knew she could do it; they were just ready for a surprise most visits.


Here, some of her therapists have a typical “Down syndrome lack of abilities” mentality and they don’t have that experience with her to change their thought processes.


They are making her prove her abilities over and over and over again.


Don’t get me wrong, I’ve been preaching repetition, but this really isn’t repetition. They seem to not believe she can do it, so when she does it, it’s a fluke and she has to prove she can do it again, and again.


We have to ensure she masters a skill but even mastery seems like luck, in one particular therapist’s opinion.


For example Leah has been working on puzzles on and off, for what seems like a year or more.


(I think it’s really been about 6 months)


So, her new teacher brings her a puzzle with 5 pieces.


She only lets Leah try 3 of those pieces.


Leah puts them all in and takes them out, plus one she grabs with her quick hands.


Then she puts the 4 back in.


But, her teacher won’t let her try the 5th because, “it’s too far away for her to reach.”


Later in the day I pull out a puzzle that has 9 pieces, which I’ve just been holding onto until she got a little bigger.


She takes out all 9 AND puts all 9 back in the exact places they belong!


So, on Sunday at church I used some of their puzzles and she did…


Every. Single. One.


She also was able to do a very abstract puzzle that just consisted of putting shapes (with no pegs) in a place to make a picture.


She tried fitting 4 triangles in a kite.


No color to match.


No picture to match.


She had to realize what was missing.


She had to find the right shape out of several different shapes (circles, squares, ovals, rectangles).


AND put the triangles in the right way (they were not perfect triangles).


She. Did. Every. Single. One.


I think she’s ready to move beyond the 3 puzzle pieces her teacher was only willing to let her try, what do you think?


How do I ensure Leah is challenged when her therapists don’t seem willing to challenge her or believe she can be?

Two years ago...

Two years ago…

I had some pretty consistent contractions starting around 3pm.

Of course, we were preparing for company who only traveled 1500 miles to see US!

(No, really they were here for the Hill Cumorah Pageant and they just stopped by since they were close, but I like to say it was for US! :))

So we threw them a pizza and said, “See ya later, gotta go have a baby!”

Just FYI, the Wren family is pretty fantastic.

They not only cleaned up after themselves, but they left money for the pizza we were supposed to be providing and even took our trash out to the road before they left!

Gosh, I <3 Mormons! ;)

So, Steven and I took the kids to my parent’s house and we were on our way to have a baby, who's name still remained a mystery.

We arrived at the hospital around 5pm and were sent to a L&D room.

I was put on monitors and started eagerly looking at every wave on the screen.

I was hoping this was IT!

Steven, the kids, and I walked up and down hills for weeks, I was eating fresh pineapple (what seemed like) 2 at a time, I was taking all sorts of natural labor inducing herbs, and using other “techniques” that were “proven” to induce.

We were ready to meet our little girl!

… She was a quiet little girl from the time she was in the womb.

She liked to play at night, but for the most part she was pretty calm.

(It was probably from all that walking! She was worn out! :))

I felt a different kind of bond with her.

Not a better, or a more magnificent, or a more amazing bond then I did with the others, just different.

It was like I knew her forever.

Like we were old souls together once before.

I KNEW her.

Back to the labor…

I was contracting consistently but not consistently strongly.

I was given some cervidil and not much happened with that…

Because of my previous c-section, the OBGYN was taking things pretty cautiously.

(Of course, my OBGYN was on vacation at the time! How dare she leave me with a stranger! :))

So, I was given some pitocin to speed things along.

Then a little more…

Then a little more…

Finally around 3am I started contracting FOR REAL!

I could only sleep on my left side because she was lying on that side.

If I moved to my right it was like she was tearing apart my hips fiber by fiber, even with the epidural.

(I was a strong girl and didn’t need any pain meds until the 2nd upping of pitocin, then I crumbled.)

So, the nurse would come in and check me every 30 minutes or so.

I was starting to make progress little by little.

Around 4:30 she checked me and I was at 5cm.

At 4:45 the baby’s heart rate went down.

The residents on call were worried.

The nurse reassured them that she had just checked me 15 minutes prior and I was only 5cm dilated.
She came in and explained that the residents were worried, “even though she told them that the baby was probably just moving down the birth canal and her heart rate just wasn’t monitoring. It’s normal. These residents just over react sometimes!”

Then…

“Don’t move!”

“Don’t push!”

“Get the Dr..”

“Move the table.”

“Jennifer, don’t move or your baby is going to fall on the floor!”

“Her head is out!”

The doctor runs in.

She doesn’t even have time to put her apron on.

She literally catches the baby.

We have a girl!

And she is beautiful!

Soft and wrinkly.

Warm and snuggly.

Her eyes are wide open and looking directly into mine.

I’m in love.

She goes to her warmer and gets weighed and measured.

She almost falls off the scale!

Well, it IS her play time, you know! :)

Her apgar scores are 9 and 10

Finally, we’re all cleaned up and ready to cuddle.

“What the heck are we going to name her,” Steven says.

“I don’t know, I like Leah.”

Leah was NEVER mentioned before.

Steven says, “Leah?”

“Yeah, she looks like a Leah. It’s a beautiful name.”

“But I don’t know, how about Sophia?”

“Not Sophia. We’ll find something, let’s not rush it,” answered the new Daddy.

We sit there in awe and in love with this little love muffin laying and watching us both watch her.

"Who does she look like?"

"Maybe a little like Emmanuel."

"It's so hard to tell when they're this little."

We do know, however...

She is amazing.

We are proud.

We are blessed.

Happy Birthday Leah.

My lil' dare devil

We have a new teacher!

And, she is incredible!

You know how you just "click" with someone, well we did!

Whew...

I'm going to try not to boo hoo about Leah anymore (or as much) on her blog.

I know there will be trials and stress but when Leah is grown and reads this, I want her to see the good part of her childhood, not just mama whining! :)

So, Leah's been lil' miss social butterfly lately.

She has her play group on Wednesday's, a play date with her buddy once a week, and 2 hours of nursery every Sunday at church.

I've been assigned to one of those hours and it is so nice to watch her play.

I think all of this peer interaction is benefiting her a ton!

Her language has exploded!

Words and phrases are coming out of nowhere!

She has been saying EVERYTHING!

Things like, "bless you".

Sit Down.

Go outside.

Jessie (my sister's annoying pomapoo). ;)

Get up.

Grandpa.

Thank You.

Please...

There's a ton more, but I'm sure you get the point.

She is doing all of this completely spontaneously and appropriately! She says them all at the right times! :)

Lil' smarty pants.

She's also becoming more aggressive physically.

Not the hitting and mean kind of aggressive, but more confident in herself.

She is trying her body a little more then she used to.

She's climbing on EVERYTHING!

I'm the kind of Mama who lets my kids fall a few times so they figure out they need to be careful.

I am a little more careful with Leah because of her neck and joints, but I still let her fall from short distances.

And you know what?

She figured out that falling is NOT fun and has learned how to get down and not to stand on furniture all on her own!

No formal instruction on how to protect herself.

Do you know how hard it is to sit and watch your baby fall and try NOT to stop her?

Don't get me wrong, it's not like I let her go up a flight of stairs and let her fall down them, I just might let her slide down a few steps.

Or, I move the coffee table out of the way so when she falls off the couch she doesn't hit her head on the wood.

And then I'm right there to comfort her when she does fall.

The other day she climbed up her Little Tykes slide, maneuvered her body to sit on top of it, and slid down.

I was about 10 feet away when she did that and I was biting my nails the whole time.

But, she slid down all. by. herself.

So then she had the cheering Mama right there to scoop her up and give her a big hug and praise!

Little moments like those are definitely ones to keep in the books! :)

Inspired

Last week was tough!

Holy Moly!

But this week is MUCH better.

Thank Goodness.

I was talking to Steven one night about my emotions.

I still can't wrap my mind around the fact that Down syndrome hits me so hard, just
out of the blue.

Anyway, I was talking about my concerns with the teacher, and not being able to give
Leah the best that she deserves, and worrying about how I will do it on my own, and...

He was obviously over my whining and really didn't want to hear anymore of it.

That made me sad.

I couldn't understand why he would be so cold towards me when I was so upset.

Steven is an amazing husband and father.

He's the kind of man who makes me feel perfect even on my very worst day.

This reaction wasn't like him.

Then he said, "Jennifer you're an amazing mother."

"You're amazing to all of our children, including Leah."

"Our children are the way they are because you are such a great mother."

"You just naturally know what to do for them and they all benefit from it."

"Stop worrying about things that you have no control over and just be Leah's mom."

"She will be amazing just like the other kids, just because you're her mom."

Maybe those aren't his EXACT words but that's the gist of it.

Yep, I'm a lucky girl, I know.

So, I've been trying to take the compliments to heart.

I don't think that I'm that great of a mom.

He gives me more credit then I deserve, but my kids are pretty fabulous so we must be doing something right.

Then, yesterday Leah's PT was here and he was tapping her hands and feet very rapidly. I asked him why he did that. He said because it helps to wake up her nerves and will help stimulate her resting responses a little because she was being pretty floppy.

She was responding well to the stimulation and he said, "She seems to like it."

Then I said, "I do that all the time. I don't know why I do it, but she loves it when I do."

I've never done this tapping thing with any of my other kids.

It's just something I started with Leah.

No one else has ever done it with her either.

Until now.

Maybe Steven's on to something.

Maybe Heavenly Father is equipping us with the instincts we need to parent Leah.

Maybe I need to have more confidence in myself and not worry too much about the therapists.

Not that I don't appreciate them.

If it wasn't for her PT I wouldn't know why I was doing the things I was.

I love the extra knowledge they give me and their support is irreplaceable.

But I think I need to have more confidence in Heavenly Father and rely more on His knowledge and blessings, and less concern over what I'm not doing.

I love my family.

I especially love Steven.

He is more then I deserve.

He is more inspired then he realizes.

He is more inspiring then he knows.

Yep, you can all be jealous! ;)

I wish I could change...

These stupid emotions!

The other day was a tough Down syndrome day.

It's the strangest thing , the way these emotions pop up.

Literally, one second I'm looking at my sweet princess and I'm in awe of how
incredible she is.

The next minute, I'm in tears for fear of her future.

I think the fact that I felt out of control of her therapies triggered my worry.

I just want what's best for her and I was scared that she wasn't going to get it.

So, for the first time in many months, I was crying for my cutie pie.

Dangit.

I'm all better now.

We will be getting a new teacher.

And, I am going to explain my expectations from our first meeting, so we are both on the same page.

Maybe then we won't have such a conflict.

I'm happy that the past few days are behind me

This roller coaster ride of emotions is the only part of this whole Down syndrome thing that I would change.

Lost

Well, we had to fire our first teacher in our new county.

Which wouldn't bother me too much if there were more then TWO teachers in this county!

She wasn't a bad teacher, just not right for us.

She didn't have much experience with Down syndrome and I believe she didn't think Leah could succeed.

We all know otherwise.

Maybe I'm wrong, but it's the way I feel and I had to go with my intuition.

And, I don't have the patience, or time to waste, to prove Leah's abilities to anyone.

I need someone to teach me what the next steps are, not someone who needs me to teach them the learning styles which are typical of individuals with Down syndrome.

In my opinion, a special education teacher should have that knowledge already.

People with Down syndrome tend to thrive with repetition, consistency, and time to process.

At least Leah does.

And to me, it makes sense that most would, because of synapse speed and connections in the brain.

Anyway, no matter how many times I told her teacher that Leah could do something if you just give her a second to process, she wouldn't listen.

Leah has always amazed and impressed any professional who has, or has not, had experience with Down syndrome, because they gave her a chance to amaze and impress them.

I didn't get this feeling from her teacher.

It was like she was just looking for Leah to fail.

Our last IFSP evaluation had Leah at a mild to moderate delay and that was only so we could continue services at their current levels.

That doesn't sound like a kid who failed to me.

Leah does have some delay, don't get me wrong.

But with proper teaching techniques, she works past the delay and catches up quickly.

So we needed a change.

But, now we don't have a teacher at all!

I'm not second-guessing my decision because I prayed about it and that's what I needed to do, but darn it!

I miss our old therapists so much! (I should say previous, not old... ;))

They taught me so much.

They encouraged me so much.

They had strong faith in Leah.

When we were with them I knew Leah was in the best hands there were.

Loosing a teacher just takes away one more resource to rely on.

Her other therapists are great resources, it just feels like I'm missing a piece of the puzzle.

Make sense?

Leah's previous teacher did recommend a HELP (Hawaii Early Learning Profile) activity guide that would help supplement Leah's therapists in case we didn't have services for a while.

But, I'm a visual/hand's on learner.

I need to watch it done so I can do it myself.

I read the activities in the manual and they make sense, but when I go to implement those activities, they just don't seem to work.

I feel lost.

My baby deserves the best and I feel like a failure because I know she's not getting it.

I don't want her to fall behind because I can't teach her or because I don't know what skills come next.

She is SO smart.

But, she needs help.

She can't do it on her own.

And, neither can I. :'(

Complete

Well here I am.

Finally.

I've missed blogging, but life has been very full for the last few months, so I haven't had any time to justify blogging.

Today a belt broke on the lawn mower, or I would be spending the next 3 hours cutting the grass instead of doing this (dangit! ;))

We are all adjusting nicely to the newest transition in our lives.

The kids are still "rockstars" at their new schools and thankfully their grades have not slipped in any way.

Steven doesn't mind the 45 minute commute too much, because he has the serenity of the country to welcome him home.

I'm falling more and more in love with our new digs every day!

Leah is doing very well.

She is getting very big though.

So far, so good with her new therapists although, I have some reservations about her teacher.

Her speech therapist is very warm and kind and Leah seems to have taken to her quickly.

Her occupational therapist is amazing.

And, we are seeing her physical therapist for the first time on Thursday.

They only have one PT for the entire county!

We were spoiled with our previous therapists.

I miss them all very much.

And, with all of the craziness of the move, we never got to say good bye.

::sigh::

Lately, we've been working on following more broader directions, like: "Leah throw this in the garbage please."

She is starting to understand more concepts but she needs consistency, that's for sure.

Leah is also beginning to use her vocabulary more without needing prompting.

Words like no, all done, thank you, hi, and bye bye come now without anyone telling her to say them.

We are working on more, please, and I love you as well as trying to get her to ask for things instead of just telling us when she doesn't like/want something.

I keep falling more and more in love with this kid.

She's my buddy.

She has an incredible personality.

She's as stubborn as could be.

She's very prissy.

She's incredibly loving.

She is shy.

She is outgoing.

She is silly.

She is super serious.

She is inquisitive.

She is smart.

She is beautiful.

She is amazing.

She seems to know me just as well as anyone else does.

She seems to know more then I could imagine.

She seems far more knowledgeable then her years.

My life wouldn't be complete without her.

Now to decide if there's one more waiting to make it completely complete...

The Move

STRESSED!

Yep, that’s me today.

This whole move is starting to get to me. I know that I have nothing to worry about, everything will be fine.

I prayed about it all; so this is where I need to have a little faith.

Sounds easy enough.

But I will miss Leah’s therapists.

And what if the new ones aren’t as good?

What if she falls behind because I don’t work hard enough for her?

What if she gets mad because of the transition and won’t work hard enough for me?

What if we don’t like the new house?

My heart is full of what ifs.

Down syndrome hasn’t been as much of a focus lately.

Honestly, I’ve been thinking less and less about Down syndrome as a life-altering diagnosis and more like a minor condition.

For example, Elijah is near sighted and so he has glasses, Leah has Down syndrome and so we have therapies.

Make sense?

But now I’m all worried again.

Maybe part of my worry comes from her latest OT evaluation. She had results that I wasn’t expecting.

Maybe it’s just the move.

Maybe it’s a little of both.

So, I’ve spent a fortune on books and toys to take with us so I can do my part.

I’ve been on the floor playing with her for most of the day.

But then I’m not getting my work done around the house to get ready to move.

Good thing the new house has a whirlpool tub (and maybe even the hot tub will work) then I can get rid of some of this stress! :)