Yo soy La Lay

adventures in family, faith, and Down syndrome

State of Our Union, February 2016.

It’s time for a good, old-fashioned State of Our Union update.

My lack of writing hasn’t been for lack of topic, or even lack of energy.  Quite frankly, I have lots of ideas rolling around in my head, ready to shake out on the computer page.  What I haven’t found is an environment in which I can feel settled in and focused on the words.  This is just my general state right now – a lot of things in a lot of places (including my own brain) and a routine that is somehow not routine at all.

It’s weird.

We sold our town home in December and are looking forward to purchasing a new home in the Spring, when it is a little greener and a lot warmer.  Still in the midst of Crabuary, John and I are both busy with the odd, mid-year craziness.  For me, I’m in the phase of my year that is still this year, but kind of next year all at the same time.  We talk a lot about events in the here and now, like parent conferences and grades and institute days, but also about next year.  Next year’s schedule, next year’s group of students, next year’s curriculum.

See?  No settled, no focus.  I’m like one of those frustrating novels that keeps flipping back and forth between time frames.

Those make me nuts.

Ellie’s big “news” is that she is officially a reader.  This is something that she is super excited about.  She loves books, always has, and so now that she can start to go through them on her own, she’s thrilled.  Last night, I came home with some kind of cold virus.  She plopped me on the couch, covered me with a blanket, and sat down with Are You My Mother? .  She read me the whole thing, cover to cover.  It took her an exceptionally long time, but she stuck to it.  So cool!!

We’re getting ready to enroll her in Kindergarten next year.  Like most parents, I’m not sure how we got to this point already.  The district that we are in right now offers a Dual Language Spanish program at one of the schools and we are fairly certain that this is the program that we will send Ellie to.  She would start with 80% of her day in Spanish, gradually moving toward a 50/50 English/Spanish split.  We toured the school recently and I feel pretty confident that it is the right fit for her.  We were also very pleasantly surprised that the principal made a point to tell us that they are “fully inclusive,” so sending Tessa in a few years is not off the table.

Please let that sink in for a few moments.  Tessa.  Learning SPANISH.

There is no “no.”  There is only “how can we make this work?”

Speaking of Little Miss… we have an annual review coming up on Monday.  She is on a roll these days!  No, no walking yet.  No, I’m still not stressed about it.  When she gets too heavy to carry, we’ll have another conversation.  Right now, her words and her play skills are totally blossoming.  We are still using sign quite a bit, but she is picking up on words and phrases left and right.  The very latest is that she says “Cheese!” when you hold the iPhone camera up to her face.  It kills me.  SO cute.

Her interactive play has also grown extensively.  Simple tasks like rolling a ball back and forth or playing peek-a-boo took a little extra time, but we are SO there.  She’s gotten quite good at distraction.  When I come home from work, my mom always has a good story about how Tessa has used her charm to get out of therapy or even worse, to get out of trouble!  In public places, she is a total ham with other adults.  This is something she has done for a little while now, but boy, oh boy does she love to wave and blow kisses at all the passersby.

Suffice to say, we’re rolling along now.  Good things are on the horizon, but good things are happening now, too.  It may feel unsettled, yes, but good.

I haven’t had the opportunity to sync my latest pictures recently.  We’re over on Instagram now, participating in the #365ofDisability.  If you want to join us, we are @yosoylalay .  Lots of cuteness going on over there.  🙂

Happy almost-Valentine’s Day!

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Oh mama

Oh mama, you’ve been thrown in the deep end now.  You, with that new little baby nestled in your arms, that little button nose popping out from that flat little bridge, you don’t know what just happened to your world.  It feels broken, I know.

You aren’t going to believe a word I tell you now, but that little fact never seems to stop us mommas anyway.  We’re firmly planted in the After.  You will get there.  I swear you will.

You can’t believe this has happened in your life, but it has.

You don’t understand how no one knew before… All those ultrasounds… No one knew.

No one knew.

You don’t feel equipped to do this. You tell yourself that this isn’t the life you wanted and you don’t know how you are going to manage.

You will manage… more than manage!  You already are. And you will look back and believe me someday.

There will be changes, yes.  Detours in the path.  New lingo to learn.  There is time, so much time.  Your life is moving forward, beautifully.  It’s too much now, but I assure you, it is beautiful.

There will be days when you will yearn to be treated like every other mom.  You will shout from the rooftops that you are “more alike than different!!”  You will balk at the notion that you walk a separate journey.  You will be fierce.

There will be days when just looking at families outside of this circle will make you sad.  Maybe even angry.  Your heart will beg for someone, anyone, to acknowledge that this shit is harder than people can possibly understand.  It’s nothing like what any of those ‘normal’ families deal with.  You will be annoyed.

You own these feelings, mama.  They are yours and they are right and you are just perfect.  Your child is perfect.  You have a new journey, and it will be hers and yours together for awhile, but then just hers and you… you will cheer from the sidelines.

You can, mama.  I swear, you can.  You will.  And so will she.

  

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The Church Fiasco 

I will admit that I work too hard to keep it all together when I’m in public with the family.  Some days are just hard.  Whether it’s uncooperative children who don’t have it in them to listen to their mother or a tired and stressed out husband who just wants to be done shopping, I have a ridiculous, visceral reaction to contrary behavior.

I can’t help it, so y’all are going to have to forgive me.

Now, enter Down syndrome.

Let me be very clear – my little sweetheart does not act out because she has Ds.  She acts out because she is two.  And it’s normal.  Some days are pretty rough.

Aren’t they for all of us?

But this is the perception that I find myself fighting, which has now intensified my need to keep it all together.  I know it’s not really about Down syndrome.  I just really want everyone else to believe me.

Church Sunday started off well enough.  Tessa gave her usual hug to Miss Sheila (who is essentially a stranger, but one of her favorite people) and had a nice snuggle with Uncle Don (who she also adores).  Then, it got a little hairy.

We sit in the pew directly in front of our Praise Team.  John was playing, so it was just me in the pew with the girls.  Ellie was, for once, an angel.  But Tessa decided that it was time to be free.

During the sermon, it started with crawling back and forth.  I tried giving her the Z-vibe, which usually does the trick to calm her. The Z-vibe looks kind of like a purple marker and has a rubber end that Tessa likes to chew on.  When it is “on”, it vibrates.  She loves it.  It’s very soothing.

  
She threw it.

She threw the vibrating Z-vibe and it landed two pews ahead of us, where the most lovely little family was sitting with their children.

I about died.

The children picked it up, having no clue where it came from, and started fiddling with it, clearly amused that God had sent this little vibrating toy to entertain them.  Meanwhile, I’m starting to sweat, wondering how I’m going to survive the rest of service without the dang thing and then ask for it back in a not-awkward way.  Meanwhile, Tessa is now rifling through the diaper bag, throwing hundreds of crayons on the floor (ok, like 15)  and then I’m frantically trying pick up all the crayons (in my stupid Mom Kryptonite skinny jeans) while keeping her from falling off the pew that she is now racing up and down and Ellie’s getting involved and John is just strumming his stupid guitar and watching helplessly from three feet away and I’m seriously sweating now and about to lose my mind.

And all I can think is, “please, Lord, if the people see this, let them see poor parenting and not a poor mom with her disabled child.”

Because it’s not about the Down syndrome.  It’s just my kid, being naughty, as kids do.  I just want people to see that.

 

In case you wondered, we got the Z Vibe back after church ended.  The mother is a special Ed teacher and knew immediately what it was (and therefore, thankfully, what it was not) and who it belonged to.  Thank God for that.

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These boots are made for… crawling.

In case you were wondering, no, Tessa is still not walking.  I don’t expect her to in the near future.  In fact, I’m not sure that a human being exists on this planet that is less motivated to walk than she is.

No, really.

She can stand.  I’ve seen her do it. And she can travel across the room on her feet with very minimal support from an adult.  When she wants.

If she wants.

I’m not fretting about this at all, actually.  Quite the contrary.  Cool as a cucumber over here.  No, this is not sarcasm.  I know, I know, this is not what one might typically expect, given my attitude in previous posts.  One year ago, I was impatient.  I will still working on being “ok” with our own pace.

(In this moment, the fact that I was working on it is almost laughable.  I can’t figure out why, but right now, not being “ok” with a slower pace seems silly.)

In any case, we have put all the supports in place that she might benefit from.  Weekly therapy (which again, is not to speed progress, but to ensure that skills are developed correctly), Spio compression suit and pants, orthotic braces for her legs/feet, the most expensive pair of shoes I have ever purchased (they were 50 bucks… I’m cheap)…. Getting Tessa dressed in the morning burns as many calories as a session with Jillian Michaels.

But I digress.

She will walk, I am sure.  She just needs to find the right motivation.

As a side note, we met with our new pediatrician for the first time yesterday.  The appointment was great… Except when she asked about Tessa walking.  I literally had to bite my lip to keep from laughing when she suggested we try “putting some things in higher places so she has to work to get them.”  No shit.

The good thing is that Little Miss is indeed quite little, still under 22 pounds.  And, she is also quite cute.  Just look at how she charms her way out of walking with her Mimi today:

  

Girlfriend will get there when she gets there.  For now, I’ll just be thankful for the extra arm workout I get from hauling her around. After all, if she walks even half as fast as she crawls, we are in trouble.

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A day to catch up on life

We really put Girlfriend through the wringer today.  We have had a few days like that lately.  She’s a trooper, Miss Tessa.  She really is.

Two working educator parents means days like this – when we have a scheduled day off during the week, it means we have to jam pack it with all the appointments and phone calls and chores that cannot be done otherwise.  I’m sure that others outside of education must work this way too, maybe.  

Actually, I’m not sure.  I just know that sub plans are a pain in the rear, so for us, everything that can wait, does until we get a weekday off for some random holiday or break.

In any case, with Thanksgiving tomorrow, we double-booked therapies for today (yes, we know that’s not very nice) and then threw in a follow-up visit with her ENT (now that’s just mean).  I don’t know if we mentioned that we had a second set of tubes places in Tessa’s ears about a month ago… It was in the middle of our month-long advocacy-themed Down syndrome Awareness Month, so that little tidbit probably got lost in the shuffle.

(If you want my unsolicited, non-medical advice, I will tell you this: when an ENT tells you to get ear tubes, get them.)

I don’t know what Tessa’s hearing was like before the tubes, but I will say that almost immediately, we have experienced tremendous growth in her speech and general ability to react/interact.  There are some minor trade-offs (the whole crying-when-we-laugh issue is back), but she speaks to us nowand other people outside of the family can understand some of the things that she says!

(For example, no.  We can all clearly hear no.)

There are other words… a whole bunch of animal sounds, the number 2, hi and bye, please and thank you, papa, shh, up, and down.

For this, we are thankful.

But golly, it was a long day.  And even with the tubes, the hearing test was not completely clear.  A follow-up in a few months will hopefully give a better result.  Today, she passed “behaviorally”, which means that when they put her in the soundproof box, she showed behaviors that suggested she was hearing.  However, with the other test that somehow measures the function of her ear (note to self: look this up), she did not pass.  And so we wait three months and try again.

There are so many other tidbits to share about life lately.  So much is rushing around in our brains and on our calendar these days.  Those tidbits are for another time… for a day when I didn’t run through the maze of life responsibility that we did today.  For now, gobble gobble.  I wish you a restful Thanksgiving… and a day to check things off your list too.  May your children cooperate better than mine did. 😉 

On an unrelated note, who is this young woman and what did she do with my four-year-old??!  

 

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A Typical Two-Year-Old 

A few weeks ago, I had the rare opportunity to sit in on one of Tessa’s therapy sessions.  Since we moved, her new therapists come while I am at work and I rely on my mom and the therapy notes to learn about what she is working on.  So, when situations arise where I can be a part of the sessions, it is a treat. 

I was sharing with her DT and OT some of the newer behaviors that she has that are making me bonkers.  All kids do goofy stuff, but sometimes the approach to existing with those behaviors is different when a child has some kind of cognitive delay.  In any case, after my little laundry list of items, her DT laughed and said, “well, she is certainly displaying some typical two-year-old behavior now!”  

This was music to my ears!  For as content as I am with whatever level of development either of my kiddos reaches, it’s fun to see them enter a new stage.  And while typical two-year-old behavior is often “boundary exploring” at best (let’s be honest.  “Naughty” is a better word.), it is impossible not to feel equally overjoyed and overwhelmed that she can now stand up at the refrigerator and pull down every single picture, magnet, calendar, and momento that was unreachable, or uninteresting, two days ago.

Bring on the Terrible Twos…

  

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Advocacy #31: Imagine what if….

For 31 days, we have shared a lot about what advocacy means to our family in our little corner of the world.  On this last day, I invite you to image what if with us.

IMG_9574What if we stopped equating smart with successful?

What if we believed that those who are not “smart” still have something to contribute?

Imagine a mom getting a diagnosis of Down syndrome in a world where it didn’t matter if her child would be smart.  What if she knew that the child would be accepted, taught, cared for, and loved regardless?

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What if we presumed competence in all?  And when someone doesn’t understand, what if, instead of being frustrated, we reacted with patience and love?

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What if we stopped believing that a classroom of learners who struggle is a “dumping ground”?

What if we stopped encouraging families touched by disability to band together in separate places and in separate communities and just embraced everyone?

Imagine parents learning that their child has Down syndrome in a world where they knew that their schools and communities wouldn’t bar them from participating in classrooms and activities.  Imagine never questioning whether your child would be allowed to participate in birthday parties, field trips, assemblies, or just in plain old school.

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What if we stopped believing that the brightest are the best and instead believed that those who are joyful, humble, caring, and kind are what we need most?

What if we stopped seeing advocacy as a way of “helping the less fortunate” and instead just saw it as being a human being?

What if we stopped seeing the disabled as less-fortunate altogether?

What if we always, always chose kind?

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What if we could see beauty in the differences that make each of us unique?

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What if we respected people’s feelings and beliefs and didn’t walk through life with the attitude that a different perspective makes someone a bad person or less worthy of kindness and love?

What if we could stop seeing another perspective as an attack on our own thoughts and feelings?

What if we just chose love?  Always.

YOU can make the difference.  YOU can be the Hands and Feet.  YOU can advocate in small ways, big ways, in thoughts, in actions, with money, with words, or with nothing but kindness.

I have a playlist on my iPhone called “Fight Song.”  It is made up of a series of songs that I find motivational and I listen to it on my way to work every single day.  It’s not that I need motivation to go to work everyday. I actually really love my job.  And it’s not that I’m fighting anything or anyone in particular at all.  These songs just tend to fill me up with the energy and positive feelings that I think are so important. They remind me to be brave, to be kind, and to do good.

The first song, the song I start each and every day with, is below.  As a last thought, before we go back to our regularly scheduled program of family antics and less-relevant rambling, I encourage you to watch the video, listen to the words and imagine if this song could drive what you do every day.

Imagine if this is how we lived.

What if?

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Advocacy #26: Include me – support the teachers

As a teacher, the first thing that I want you to know is that inclusion is not easy.

Worthy of the effort, yes, but not easy.

A high priority for students and communities, absolutely.  But it is not easy.

One of the biggest struggles that teachers face is the differentiate (modify) instruction for a variety of students.  Regardless of how many children have diagnosed special needs, when you have thirty students in a classroom and you have to meet the needs of every one of them, it can get dicey.  When you think about the upper grades, where teachers have over 100 students throughout the day, it’s even more challenging.

But still, it is worth it.

I have always taken the stance that I, as a parent, and soon Tessa, as an individual with Down syndrome, will have to spend a lot of time teaching people about her needs.  When the unexpected happens, when unkind words are shared or people are impatient or rude, we can react in anger or frustration… or we can use that time to teach.

Our school teachers are no different.  We can advocate for our children by understanding that their teachers do not know our children and by showing a willingness to help them understand.  They may have have received no training on working with a child like mine.

(On a side note just as an example, in my teacher training, I had one 10 week class on Methods of Inclusion (along with a clinical observation requirement).  We had a little sprinkling of information about all kinds of special needs and how they might show up in our classrooms.)

(And on another side note, teachers who are unwilling to learn about their students receive no sympathy from me.  If you aren’t willing to educate every child that crosses your path, you need to get out of the profession.)

If we, as parents, always take the stance that people just don’t know any better and that we are here teach them, imagine what a difference we could make.  Sometimes, even if you feel they should know better, they don’t.  Even if we think that they should have worked with a child with Down syndrome or Autism or any special need, they may not have.  Or they may not have done it well because no one ever taught them.

You can work with your child’s teachers.  You can talk to their schools about special training opportunities, presentations, and conferences.  You can talk to colleges and universities about their training programs.  Be open to sharing and teaching and people will learn.

People will learn.  We have to believe in them as much as we believe in our own children.

People will learn.

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Advocacy #25: Include me

The law that requires a child to be taught in the Least Restrictive Environment (LRE) is part of IDEA, the Individuals with Disabilities Education Improvement Act, that was passed in 1975 and then reauthorized in 2004.

This does not mean that every child will automatically be placed in a “normal” classroom.  It means that students are placed in the least restrictive classroom in which their needs can be met.  Sometimes these placements are in a general education classroom without any supports.  Sometimes students need a one-on-one aide or paraprofessional.  Sometimes they have some instruction in the general education classroom and have some time pulled out to work in a special education setting.  But school districts need to provide a continuum of services to meet the needs of all learners.

IDEA also stipulates that a child cannot be placed into a more restrictive or segregated classroom based on their diagnosis alone.  All too often, school districts will tell parents that this classroom is where our students with Down syndrome go or that classroom is for students with vision impairments.

That’s a big no-no in the eyes of the law.  Students must be placed based upon their own unique set of needs and abilities.

While schools may try it, they are also prohibited from refusing to provide services based on cost.  In a nutshell, this means that if the appropriate LRE for your child is in a general education classroom with an aide, they cannot deny that placement by saying that they can’t afford to hire an aide.  

It’s also important to remind yourself, your schools, and your community as a whole that when done correctly, inclusive education is more cost effective than educating students in a segregated setting. 

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Advocacy #23: Change the Face of Beauty

We interrupt this regularly scheduled program on inclusion because, quite frankly, it’s Friday night and I can’t communicate clearly on that today.  🙂

Changing the Face of Beauty is a campaign to promote diversity in advertising for major retailers. It was started in the Chicago area by a fellow DS Momma, Katie Driscoll.  She and her amazing team have gotten over 100 companies to commit to including models with a variety of disabilities in their advertising.

Target is the only major retailer to consistently use models with disabilities in their advertising.  That’s sad.

Changing the Face of Beauty.
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