The Bus

A few weeks ago, a little girl cheered when she heard that Leah wasn’t going to be on the bus that morning.

My big kiddos became VERY protective of their little sister.

I received a text telling me about the situation, that one of them talked to the little girls, and they were all acting like “mama bears”.

They told the girls how sad they were to hear them cheer.

Asked them how they would feel if someone cheered when they weren’t on the bus.

Told them that they shouldn’t do that again.

I wrote this on my Facebook page:

“To the kids who cheered when they heard that Leah wasn't going to be on the bus this morning: just so you know, if you were my kids and you did this, you wouldn't be able to sit on the bus (or anywhere else) for at least a week. I hope Leah's siblings were firm with you and taught you how absolutely horrible your behavior was, since your parents obviously haven't been able to teach you this yet. And remember, karma's a bitch.”

Way Harsh.

Sigh.

Then a little girl came home crying because she was so worried that one of my kiddos hated her.

Her mama messaged me and told me how upset the little girl was and that her daughter promised she didn’t cheer.

My mama bear mind wasn’t hearing any of it.

My kids were positive it was those girls.

I believed them.

I was irrational mad.

I said more harsh things to this mama.

Sigh.

The next day, I called the bus garage and principal and asked them to look into the situation assuming of course that my children would be validated and the evidence would prove that my child was the victim of hateful discrimination from little, spoiled, mean girls.

Not even close.

A little girl did cheer.

Not the one my kiddos were positive about though.

Not the one whose mama said promised she didn’t cheer.

Not the one who my kids talked to.

A little girl did cheer because she was happy that Leah wasn’t on the bus because Leah sometimes takes her crayons and coloring books.

Not because she was a little, spoiled, mean girl.

Sigh.

If you know me, you know that I LOVE children.

My entire life has been focused on helping children.

I advocate for ALL children whenever the need arises.

From the time I remember thinking about what I wanted to do as an adult, I wanted to be a mama.

My connection with children is intense…

My heart broke that day.

A little girl was crying because of my child.

When a mama called me advocating for her baby, (something I ALWAYS encourage parents to do) I shut her down.

I thought and said hateful things about CHILDREN.

Sigh.

I am reliving this now because I need to explain.

I need closure.

I need to let anyone who read what I wrote or heard what I said know that you did not read or hear the real me.

I AM a mama bear.

I am not ashamed of that in any way.

Honestly, I have NEVER regretted advocating for any of my kiddos, ever.

Until this.

I can’t believe that I was so quick to jump to the worst conclusion about the situation.

I should’ve known better.

Everywhere Leah goes, everyone LOVES her.

They protect her.

They nurture her.

They play with her.

They include her.

They don’t worry about any “differences” she may have.

We have had some pretty devastating experiences with discrimination so maybe I am still very protective of her to make sure that we don’t ever go through THAT again?

I don’t know what my issue was that day.

But I am sorry.

This has been a huge learning experience for us all.

And Leah better never take someone's coloring books or crayons again, or else. ;)

(I have apologized to this mama and my kids have apologized to hers.  They have all very kindly forgiven us. :)) 

Her soul IS great.

Today is one of THOSE days.



Actually, it started yesterday after watching a talk from Robert A. Rasband, President of the Seventy of the Church of Jesus Christ of Latter-day Saints. You can watch it here.


The talk is about the greatness of souls. It talks about the burdens of parenting a child with special needs, and the beauty of parenting a child with special needs. But, you can watch it and see for yourself. You will probably get your own interpretation because that’s how these talks work. This is just my own reaction to what I heard spoken to me.


Anyway, the talk began by making me realize how very blessed we are that Leah is so healthy and is doing so remarkably.


Then I switched gears and started thinking, No, this actually kinda sucks. Why does MY kid have to have Down syndrome…


Next came…


Why did Heavenly Father send her to us, why does SHE have to struggle so much?


If people who are born with, or develop disabilities are so magnificent in the eyes of heavenly Father and Jesus Christ, why do they have to experience so much hardship?


Grateful.


That was what I felt next.


Grateful for all of the love that has been shown to us.


Grateful for the service we have been given that I am not sure I will ever be able to repay.


Grateful for the support that amazes us.


Grateful for the spirit that is guiding us.


Grateful for the gospel and the strength it has given me.


After the talk was over, I started the whole process again.


I cried.


I whined.


I questioned.


I argued.


I realized.


I understood.


This talk drew so many emotions in me, which I really needed to feel.


But those emotions aren’t always fun.


They hurt.


Today, Leah has her last IFSP review.


Today, I will go through these emotions probably another 100 times.


But through all of it…


I KNOW Leah is blessed.


I KNOW we are blessed.


I KNOW the worth of her soul is great.


I KNOW Heavenly Father is with us.


I KNOW we have heavenly messengers around us who have done more for my family in the past 2 ½ years than most people have experienced in their lifetime’s.


I KNOW one day Leah’s body will fit the perfection of her soul.


I KNOW this was all part of a plan that’s bigger than me.


I KNOW it’s going to be ok.


(But sometimes I wish I didn’t need to know it all.)

Who Will She Marry?

We’re back again.



Leah is well.


Sometimes a little too well! :)


Honestly, we are still trying to figure out where we fit in.


Leah is still making huge strides!


Her only “real” delay is in her fine motor skills, and we’ve changed therapists to one who will hopefully help them improve.


Our previous therapist was a really wonderful woman, but she had limitations set for Leah, so Leah was limited. The new therapist is already challenging Leah, she understands my desire to push Leah, and she will not give her an excuse because she has Down syndrome.


Before I made the change official, I spoke to the therapist to make sure she understood my wishes.


She did!


Leah is really amazing.


She has the appearance of Down syndrome.


She has the traits associated with Down syndrome.


She has some health concerns which are common with those who have Down syndrome.


BUT…


She is cognitively at an age appropriate level.


She speaks at an (almost) age-appropriate level.


Physically, she is only minorly delayed.


She is severely delayed in her fine motor skills, but I know that will change pretty rapidly with this new therapist, just as it did when we switched to an appropriate level of services with her new physical therapist.


But, Leah has Down syndrome.


None of her accomplishments are common with children who have Down syndrome.


All kids have unlimited potential, including those with disabilities.


But, Leah is shattering a glass ceiling.


Most of her friends are too, but not as quickly.


Those who shared the same level of accomplishments a year ago are falling behind.


It is so hard for me to brag because I don’t want to hurt anyone’s feelings.


I don’t want people to think I am boasting or prideful.


I don’t want to seem like I’m ever saying my kid is better than anyone else’s.


I don’t want to ever hurt anyone’s feelings…


But, I’m a Mama, and what Mama doesn’t want to brag?!


My heart is sad every time I see someone comment on my Facebook posts that they wished their child did what Leah was doing.


I wish they were too!


I wish we were all experiencing the same miracles.


I wish all of our kids were so healthy.


I wish I knew where we fit in.


We don’t fit in with typical kids because Leah has Down syndrome, we don’t fit in with kids who have Down syndrome because Leah is so untypical.


I know I’ve said this before, but it really is a difficult place to be in.


I wonder who Leah will marry?


Seriously.


Say she continues on her same path.


Say she has a normal IQ and becomes a teacher or something?


What typical boy would want to marry a girl who has Down syndrome?


And honestly, if she is typical in every way besides her appearance, would she want to marry a boy who has Down syndrome?


I just see her heart getting broken.


And, it breaks my heart.


Don’t get me wrong, I am incredibly grateful for the amazing blessings we have been given.


I will be happy with any boy Leah chooses to marry, as long as he is a good boy, and LDS! ;)


I am as impressed with Leah as anyone else is, but I have to understand her limits too.


What mom doesn’t think about who their kids will marry every now and then.

But, who is she limited to?

Where do we fit in?

How do we take joy in our accomplishments when they don't fit in with anyone else's?

Who can we share all of our joy with when no one is at the same place?

Leah's delays make her obviously behind typical kids.

Leah's accomplishments make her ahead of kids with Down syndrome.

If there is someone out there who understands willl you please introduce yourself?!

We could really use some friends right now.

I am tired of comparing Leah, or having Leah compared to other kids and I just want to fit in somewhere!

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?

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.

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...