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.

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. :'(