Yo soy La Lay

adventures in family, faith, and Down syndrome

Reflections from Auntie Kelly (on HER birthday!)

If there was a perfect person to raise a child with special needs, it would be my sister.  Having grown up with my brother and I to drive her batty, she learned patience better than either of us older ones ever did.

Today is her birthday.

She wrote this for the series that I did back when Tessa was born and I never got to publish it.  But since it’s her day to shine, I thought today is the perfect day.  Her perspective is unique, as she spent some time working with adults with special needs after she graduated from college.

I very truly believe that the vast majority of events in my life have gone much better for me simply because of her presence.  It’s a “no BS, occasionally dramatic, wow, no one gets this but you” kind of sister-ship.  We make each other crazy most of the time, love each other all of the time, and share a serious obsession with all things chocolate.

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 When Tessa was born, I was so very thankful that Ellie would have a shot at a relationship like I get to have with my own sister.  In the most basic of terms, she is wonderful.  

 

This is the story of Auntie Kelly and Tessa…

As with most life-changing events, on Tessa’s birthday thirteen months ago I woke up with no idea how life was about to change. For me, Tessa’s birthday started as any other day. I woke up, got ready for work, kissed my husband and 4-month-old daughter goodbye and started my day.

Around 10 am, I got a text message from someone – I can’t remember if it was from Maggie or from my mom (aka Mimi) stating that Maggie was in labor. Hooray! I spent the next few hours frantically checking my cell phone. Was the baby here? How far through the process was she? I know the second child always comes a little faster, so what was going on? Why hasn’t anyone answered my texts?

Finally around 1:00, I got a message from Maggie. It’s a beautiful little girl, 6 lbs 14 oz. Labor went quickly in comparison to Ellie’s birth. Doctors and nurses have a few concerns about her, so they’re doing some tests. What do you mean, tests? As soon as I could, I picked up the phone and called Maggie. “What do you mean? Is everything OK?” “They think Tessa has Down syndrome.”

About a million thoughts and feelings rushed through my mind in the next moment, in the next day, week, and months. What do you do with this information? What are you supposed to say? What is my role here?

This is where part of my personal story takes a role. Upon hearing Tessa’s then potential diagnosis, my first solid train of thought went to my first “big girl” job. I first worked at a non-profit agency for adults with developmental disabilities.  It is a company that gives people with disabilities a place to call home and a job that is appropriate for their skill level once they age out of the public school system. The company I worked for specializes in programming for adults diagnosed on the autism spectrum, but my experience there was enough to get me thinking about what life could be like for Tessa in the future.

I have worked with a full spectrum of people who had been diagnosed with a disability. I could spend my morning with one young man who you would never guess had been diagnosed that could generally get along fine, but just needed a little guidance with higher-order reasoning and decision making. That same day, I could interact with another man who could only communicate in grunts and by reenacting noises and scenes from his favorite old western and slapstick movies. (“Bang! Bang!” “Get in the car!” “Whoop-whoop-whoop-whoop-whoop!”)  I’ve trained staff members to handle situations in which someone has a “behavior” (a term I’ve come to loathe). I’ve been bitten, scratched, hit, belittled, and berated. I’ve even purposefully ran towards someone while they swung metal pipes at my head. I’ve driven the streets searching for runaways, administered medications, I’ve cleaned up an adult’s poop, someone else’s ear-wax… I’ve seen and done a lot of things, things that some people would find terrifying. And it was just another day on the job.

These experiences were the thoughts I had when I heard about Tessa. What would her life be like? What was her future? What happens now?

There really are no words to explain that feeling. Fear? Sadness? Disappointment? Anger? No, not really any of those things. Worry. Maybe that’s more fitting. I have a picture of what Tessa might have to face in her future in my mind, and I worry. I know where the world is, and what we have to overcome. If we as typically functioning adults can’t even treat other typically functioning adults who just happen to have a different color skin than the ones we were given with fairness and truth and faith and love, what can we expect for Tessa? What kind of future will she have? What will this world be to her?

We drove down as soon as we were able that evening. We probably arrived at the hospital around 7, minds racing. We didn’t even think about the fact that babies were not allowed past the waiting room, so focused on our ultimate goal to meet Tessa. John offered to stay and watch Grace while we got to go in and see Maggie and Tessa. I will never forget the look on his face.

Grace was just over four months old at the time. I can probably guess at what John was feeling in that moment. He was exhausted, just mentally and physically tired from the shock of the day’s events. I believe he was probably happy to have a break and to be able to sit and digest his thoughts (practically) alone. And sad. He was so sad. His facial expression made that clear. To look at my daughter and feel that this is what he had hoped for his newborn child. To know that his daughter may not have the future that my daughter would. That was a hard pill to swallow.

I don’t have a lot of experience with other people besides Tessa who were blessed with the 47th chromosome. But my life has been enriched in ways that I could never even fathom by countless other individuals, who just happen to have a developmental disability. I may have experienced all those terrifying sounding things I mentioned before, but was I unhappy? No – believe it or not, that was the best part about my job. At the end of the day I would go home exhausted, but satisfied in knowing that I had helped someone succeed at doing something that I otherwise would have taken for granted. Like roller skate. Or buy a favorite movie online. Or write an email. Or communicate with someone. Or use the bathroom. And if my heart can be opened to loving all those people, people who aren’t family to me, people who I don’t even see anymore…  what will Tessa do? How will she turn my life around? She has so much potential in those tiny little fingers, and she doesn’t even know it.

Maybe Tessa won’t be the next President of the United States. Or maybe she will… who knows what her future will hold. Like I said before, if we still haven’t gotten this race thing figured out, I’m not too optimistic about turning around the world for people with disabilities in just one lifetime. (But as a side note, I am optimistic for positive change as we make steps in the right direction with things like the recent passing of ABLE into law.) Whether or not Tessa becomes the President of the United States or the President of the Lay Family household, it doesn’t matter. She matters. Her life matters. The only thing that is truly important is that we make each other happy. That we love one another. All Tessa wants out of life is to love and be loved, just like you and me. And the beautiful thing is, all it takes to make Tessa happy now is to provide her with the basics. A bed to sleep in, some food to eat, a family to love her, and (for now) a shiny mirror to gaze into. How any of us “typically functioning” people can say that about ourselves?

Tessa is one lucky little girl, but we are the ones who are truly blessed. Her life serves as a reminder for us to take a step back and look at what is really important, something we all need to do occasionally. ​I thank God for Tessa. I am blessed to be able to witness her life, and can’t wait to see what she will become. I’m proud to be her aunt!

 

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She’s got the look

I forget that people see Down syndrome when they look at Tessa.  We go about our business day-to-day and most of the time, it doesn’t occur to me that people might notice… and then they do.  And every time, it sort of jolts me.

It happened twice this week, out of the blue.  A much older woman stopped me at a family party to say “I have a granddaughter who is special also.”

“Oh?” I responded.  Because how else does one respond to that statement?

“Yes, she has Downs.  She’s 22 now, I think.”

I just smiled and said “I bet she’s lovely.  This little child certainly is.”

Then today, much later after I had shown a new colleague some pictures of my girls, I absentmindedly starting talking about her weekly OT sessions.

“What is she working on with her?”  she asked.

“Oh, well, her hands…” I stumbled.  “I mean, she has Down syndrome, so…”

Her response was, “Well yeah!  The picture.”

Right.

It is everything and nothing.

And now…. cuteness.

The best ones are always blurry.

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Life, lately

It’s been difficult for me to sit down and write these days. Not for lack of words, I assure you, but simply for an odd restlessness that had settled into my brain. (Hello, 3 am wake ups, can we be done now?)  We’ve had a lot of serious discussion happening in our home about our future and those talks have mostly drained my ability to look at computer screen and write it out.

I realize as I re-read what I just wrote that I sound terribly melancholy. Rest assured, I am not. As a matter of fact, especially this weekend, I have had a rush of peace with the whole idea of our new family adventure. We’re moving forward.  It’s all good.

Very quickly After, we knew the time would come that we would have to move.  For more reasons than I could possibly go into (not the least of which being the cramped quarters of a home we meant to move out of 3 years ago), it’s time now.  And because of the fabulous fact that we bought our house at the second-worst possible time in recent history, our move is going to involve a stint living at home with Momma and Daddy Dub.

I didn’t expect to spend the summer of my 30th birthday moving back in with my mom and dad.  Then again, I didn’t expect a lot of the twists and turns that I’ve taken in life, so we’re rolling with it.  We don’t necessarily have a timeline for selling our current place, which is nice because there isn’t much of a rush to pack it up.  We’ve started, but it’s not all-consuming.  True to my usual manner of business, I’ve got a few spreadsheets rolling to organize us.  No major task in our family is complete with out some help from Microsoft Excel!!

The kids are thriving lately.  Tessa’s annual meeting went really well.  The therapists have been really impressed with her progress and I was able to push for a specific goal that I think will target her communication skills.  We (very necessarily) have focused a lot on eating in the first year.  Now that she’s sitting, beginning to sign (yay!) and beginning to have more feelings and needs, I’m looking forward to working more on communication during our sessions.  We will continue to have OT, PT, Speech, and Developmental therapy each one time a week.  She’ll start wearing a Spio suit soon, which looks kinda like the clothes you wear for scuba diving if you ask me (though it is sleeveless and shorts, not pants).  You should know that we don’t live in a constant state of therapy in our house – that really, truly, most of Tessa’s “therapy” comes from trying to get the toys back that Ellie steals from her.

Just before we had our meeting, I ran across a quote on the National Down Syndrome Society‘s website that was a lightbulb moment for me. On the surface, I knew this, but the words struck me in such a way that I had a productive shift in mindset.  It reads:

The goal of physical therapy for these children is not to accelerate the rate of their development, as is often presumed, but to facilitate the development of optimal movement patterns. This means that over the long term, you want to help the child develop good posture, proper foot alignment, an efficient walking pattern, and a good physical foundation for exercise throughout life.

Ok, duh.  I know this.  But, for whatever reason, the statement that Tessa is 48% delayed in her locomotion (moving) skills hasn’t phased me simply because of this.  Because suddenly, the delay isn’t about me not putting her hip helpers on her for three days in a row.  She should wear them, yes, but it’s not about me holding her back, but more about teaching her to do it correctly.  Weird how things can strike you like that.

I look forward to telling you about my older child’s awesome development soon… at a time when she isn’t hanging off of my arm crying that I put too much milk in her cup.  Ah life… I wouldn’t have it any other way.

A picture of Ellie at hour 10 of an 11-hour Road Trip, just because.  She was 13 months at the time of this picture (same age as Tessa today).

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Basics, Year Two

One year ago today, fresh off our rocket launch into the world of Down syndrome, we (mostly I) started writing.  We began with the basics.  Today, an update:

This is what you should know about my family:

John – Husband. Age at this writing, just shy of 30. Married almost 6 years. Dad, teacher, coach, Fantasy Football Commissioner Extraordinaire. My best friend and favorite person on the planet.  Will give you the shirt off his back and then worry that he could have given you more if he had just thought of it at the time.

Ellie – Child #1, girl. Age at this writing, 3.5 years. Matter-of-fact, sweet, unapologetic, bossy. Self-described “goofball knucklehead bum.”  Still doesn’t color WITH you, but rather tells you what to color and expects you to do as you are told.  Uses a lot of big, adult words and phrases with perfect comedic timing.

Tessa – Child #2, girl. Age at this writing, 13 months. Active, sweet, chatty in small groups. Likes crawling around the house, dumping over bins of toys, and looking in the mirror.  Dislikes being left alone, especially at bedtime.  Her smile will melt even the coldest heart… as will her pout.  Has Down syndrome.

Me (Maggie) – Age at this writing, 29 (gulp.)  Educator (Division Chair/Spanish teacher/whatever else they need me to do). Personality? See Ellie’s description above. She is me, in toddler form (except for the whole “knucklehead bum” thing). I love inspirational quotes, chocolate, and margaritas.  I write for my family and my kids – but I’m happy to take anyone along for the ride who wants to join us.

Year two… let’s go!

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MLK Jr.

Darkness-cannot-drive-out-darkness

Let us not forget light and love…

Light and love.

We have a duty to make things better during our time on this earth.

For better or worse, you can choose how you will fight your battles.

I choose love.

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Prep work

We are getting ready for our next IFSP review. If you remember waaaay back when Tessa was born, I shared that an IFSP is a document that lists all of Tessa’s “goals” for development. The first evaluation and meeting was more than a little overwhelming. Several therapists descended upon my home and spent at least an hour firing questions off about my 4-week old baby’s development…. Then, they asked me what I wanted her to do.

Um. Hmm. Well, she’s a month old, and I have no understanding of reasonable expectations at this point, so I don’t know, you tell me what she should do.

(Which they can’t, because the IFSP is a family plan – family directed. So, fellow Ds mommies, remember that. If you want speech for your child, make sure you write a speech goal. Don’t let them tell you to wait until… until whenever they say.)

I came out of that first meeting more than a little shell-shocked. And I’ve been dreading the annual review ever since.

The difference this time is that her evaluations have happened during regular therapy sessions, so there will be no barrage of questions from four different people at one time. However, I sat through each of her evaluations individually (except OT) and believe me – I have answered enough questions. John also saw his first eval ever (DT). I think it was more than a little enlightening. Now to my most stressful part – goal writing.

Since the first meeting, I vowed to never go into a review without being prepared to get what we need. At the six-month, I wrote several goals for the plan before we met and it made the meeting a breeze – I shared the goals, they wrote them down, we got all our therapies, done and DONE.

Though I know it wasn’t, it seemed easier six months ago. It also seems like I had a lot more no, she doesn’t do that yet answers on her evals this time than last. That is probably not a distorted reality. The older they get, the more checkboxes to conquer. Believe me, I’m ok with the ‘no’ answers today. My own challenge is to figure out how to best help her progress without also making myself feel like I have to spend every waking moment therapizing her (and subsequently feeling guilty when I don’t do all that I can).

No, therapizing is not a word. I know.  Can you forgive my need to make up new words so that I can share our story?  Thanks.  You rock.

She will do what she wants, in her own time. It has been our mantra since day one. And right now, we, her generally mature and responsible parents, are tasked with advocating for the tools she needs to help her do it (whatever ‘it’ is) well. So let’s hope we don’t screw this up. 😉

I’m counting on you guys!!  

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A Year of Ellie-isms

I had to laugh when I looked through my 2014 Year in Review on Facebook.  If you aren’t on Facebook, the site put together a “review” that gathered up your most popular pictures from the year in chronological order and then gave users the opportunity to post this onto the site for everyone to relive their awesome year.  Mine was very sweet… and very full of pictures of Tessa.  As a matter of fact, every single picture was of Tessa.  And this is all well and good (she’s very photogenic), but as I have two children, I felt a little “oops” when I saw the review.

Out of sheer guilt, I went hunting for posts about Ellie.  I’m feeling much better now.

I hope you enjoy our year of posts inspired by our wild and crazy oldest daughter…

January 9, 2014

Weird Toddler Behavior #673: Stashing toys in the pull-up. Apparently she just couldn’t be bothered with carrying her Elmo phone, so into the pants it went. Unfortunately for her, you can’t hide much in skinny jeans…

January 28, 2014
I leave her alone with Tessa for 30 seconds… She tells me that they’re “practicing for Auntie Kelly’s birthday.”

 

February 7, 2014
The joy and terror of popping popcorn…

February 10, 2014

We have such thrilling dinner conversation… Tonight, my favorite lines were “please stop licking the table” and “Ellie, we don’t eat chalk. Spit that out.

February 22, 2014
This morning, we decided to surprise Ellie by jumping into her bed and waking her up. Not only was she already awake when we got there, but she literally smiled up at us and said, “Oh my gracious. You are bothering me. Can you get out of my bed, please?”

February 25, 2014
Me: Hey Ellie, what did you do at Miss Julie’s house today?
Ellie, in the most joyful of voices: I farted!!!!!!!
Me: Oh. What else did you do?
Ellie: That’s all, Momma.

March 26, 2014
…and then there’s that panic-filled moment when your child comes running into the room exclaiming “I really need to screw something!!!” And you turn around and sigh with great relief because she is toting around one of Daddy’s screwdrivers.

April 27, 2014
John: Ellie, walk down the stairs, please.
Ellie: Ahh! I can’t! I can’t live like this anymore!
John: Well, I need your help cutting strawberries.
Ellie: I just can’t work in these conditions!!!!!

May 11, 2014
I am wondering how long this “imaginary friend” phase is going to last. Because I have to tell you, I look like a total nutcase pushing “Millie” in the swings at the park.

May 16, 2014
Ellie: I’m a little girl, so I can drink milk!
Me: Adults can’t have milk? What about me and Daddy??
Ellie: So Daddy has water and beer.
Me: Oh yeah? Well what about me?
Ellie: Just wine!

May 28, 2014
Today when another girl in the doctor’s waiting room refused to share the crayons, Ellie looked her square in the eyes and told her “Fine. Go drink your water. I don’t want to play with you anyways.”

June 12, 2014
Seen: One three-year-old, shaking her naked butt in her little sister’s face yelling, “Do you know what this is??? It’s my butt!!”

June 27, 2014
Happy THIRD birthday to our goofy little comedian, Miss Ellie Bean!!! In true Ellie fashion, when we woke her up singing Happy Birthday this morning, she shoved her little hand in our faces and told us “Not yet. Go away.” Wouldn’t expect any different!!

July 2, 2014
Overheard: “Tessa, are you going to jail with me? We can read books and ROOOOOB the bank!”

July 28, 2014
Three-year-old for sale. Mostly potty trained. Needs work on table manners. Comes complete with a variety of memorabilia from the movie Frozen, an endless supply of jokes with no punchlines, and more sass than a 15-year-old girl. Seller is willing to be paid in chocolate and bottles of tequila

August 24, 2014
Just changed Ellie’s bedding. When I removed her comforter, I found 17 books (12 hard cover), 2 cups, 5 monkeys + 1 Curious George, 3 stuffed dogs, her nightlight, a stethoscope, and a framed picture of John and I. ??????

August 26, 2014
It takes real talent to put a pair of underwear on inside-out, backwards, upside-down, and only using one leg hole. But, at least she’s wearing underwear…

September 12, 2014
5:15 am: Sobbing on the monitor… “I just need ice cream! With all my toppings!! And my favorite circle balls!! I’m scared there’s no ice cream ever again!!”

She’s just like her mother.

October 22, 2014
Half time at John’s football game. Ellie approaches as he is conversing with parents and players.
“Daddy, did you pick out this shirt??”
“Yup, and your pants, too.”
“And did you pick these undies??”
…and proceeds to pull her pants down in front of the entire crowd.
We’re never going back again.

October 26, 2014
So I’m cleaning the bathroom and Ellie comes running in yelling “Oh wow! Thank you so much!” In her arms are all of the Christmas presents that I had already purchased for her.

What am I supposed to do with this child?

November 1, 2014
This morning, she tells us, “I need to eat! I’m not having pancakes. I’m not having oatmeal. From now on, I’m JUST having candy. You all just need to relax.”

 

November 10, 2014
Ellie, teaching Tessa how to eat: “Look, you just swallow, then chew. And if you don’t like it, you just spit it in Mommy’s hand.”

November 23, 2014
Ellie: Mom! Come see! Tessa is awake!
Me: I’ll be right there, just have to finish writing.
Ellie: Mom! Life is all about making children happy. Don’t you know that??

December 4, 2014
Home with a sickie today watching One Direction on Sesame Street.
Me: El, are those boys so cute?
Her: Oh, Mom. Babies are cute. Those boys are so haaaandsome. Play that one again.
And so it begins…

December 30, 2014
In the midst of our heated discussion about whether to fix the old car or buy a new one, Ellie came running into the kitchen yelling, “Guys! Stop arguing! We are livin’ the dream!!”

There were plenty of pictures of our crazy kid, too, many of which I have shared here and a few old ones that really made me smile.  I try really hard to be balances, so today, I feel good about the year we had and where we are going.  One thing is for sure – Ellie is not going to allow us to “forget” to love on her.  What joy (and agonizing frustration 🙂 ) she brought to us in 2014!

Happy New Year!
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