Yo soy La Lay

adventures in family, faith, and Down syndrome

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.

IMG_7455 IMG_7486 IMG_7506

4 Comments »

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).

IMG_2213

Leave a comment »

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.

Leave a comment »

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!!  

IMG_7052

4 Comments »

Reflections from Ellie

More than me, more than John, Tessa adores Ellie.  The bond that these two share is unlike any I have ever seen before. This morning, I stayed at home an extra 10 minutes so that I could see my girls wake up before I left for work.  Ellie is quite the grump in the morning, but John has found that by plopping Tessa next to her in the bed, she wakes up totally happy.

Watching Tessa wake Ellie up this morning was the cutest thing I have ever seen.  (And, I apologize, because I have no video of the event.  Some things are better experienced  when you aren’t looking through an iPhone screen.)

We wanted to share Ellie’s thoughts on Tessa and her birth.  So, we asked her to tell us about the day Tessa was born.  This is what she told us:

5 Comments »

Reflections from Mimi

My mom is the kind of person who knows the life stories of many strangers.  Though I cannot tell you what it is about her that make her this way, when she talks to you, you just want to tell her everything on your heart.  She has a kind face and a gentle smile.  She is an excellent listener.

Later in her life, she studied social work and was trained to work in hospice care with the terminally ill.  In a crisis, she is the one you want to help you process through your feelings.  She’ll “social-work” the heck outta ya and you won’t even know what hit you.

By chance, she was the first person in the room after Tessa was born and for that, I am eternally grateful.  This is her side of the story.

– – – – – – – – – – – – – – –

The secret joy of Tessa hugs.  Those crunches that end with her cuddled into the crook of your neck that are extra special at 5:30 a.m.

The wonders of milestones met.  They don’t happen in the blink of an eye or suddenly.  We get to watch each painstaking step toward achievement.  Milestones that Tessa meets at her very own speed.

The strength of two dedicated, strong parents.  John and Maggie are two individuals, working as a team and meeting the needs of not one, but two special girls.

I have learned so much since Tessa was born.

mom 4

I have told everyone, any chance I get, that being a Grandparent is the BEST gig in the world.  When Ellie (our first grandchild) was born, I thought I’d met the most wonderful baby… ever!  When grandchild #2 came along, I secretly feared I wouldn’t love that child as much as Ellie.  Boy, was I wrong.  Tessa is #4.  And with her birth came an opportunity to learn a whole new meaning of love.

The moment I received the news that Maggie was in labor and headed to the hospital my heart was filled with excitement. As was pre-arranged, I would be available to meet her needs first by caring for Ellie, and then also to be moral support as John tends to get a little bored by labor.  So, when I got the text asking for re-enforcement and lunch (for John),  I settled Miss Ellie with her Papa and headed to the hospital.

mom 6

When I arrived, I phoned the nurses’ station to be allowed on to the floor.  My request was met with obvious hesitation.  I wondered what that was about.  I said, “She asked me to come.”  They let me in and told me which door to go to.  Then there were the huddled whispers that I didn’t understand… until I walked in the room and saw John holding the baby!  Oh, I thought, the baby is here! That was the reason for the looks.

Nope!

Maggie (or John, I’m not absolutely sure) said, “The baby has Down Syndrome.”  Just like that, I knew our lives would be forever different.  I was blessed to have the opportunity to spend time with this young couple as they began to sort through their thoughts and feelings.  I did a lot of listening that day.  I listened as Maggie spoke of a fear of people “feeling sorry” for them.  I listened as John spoke of fears for the unknown future.  We talked about the shock of the news, which could have been broken with a little more finesse.  We talked about those fears and worries. We also talked about unexpected joy and strength that is granted just when it is needed.

mom 5

One truth in life is that NONE of us  has a guarantee to live the way we expect.  No parent can ever be sure that their child will grow up to be who or what that parent thinks they will or should be.  We do the best we can with what we have in front of us today.  We take each day by faith.  And we PRAY!!  We put our trust in Him that knows all.  And finally, we LOVE with all our hearts.

And, oh yes, I forgot to tell you the BEST part of that day.  It was the time I was able to spend holding my newest grandchild, Little Miss Tessa, with whom I fell in love at that very first touch.

mom 2

One year is almost upon us.  I continue to be thankful for the gift of Tessa in our lives.  She is AMAZING!  She is a sweet and funny girl!  I even see a bit of her Mommy’s sassy side from time to time.  John and Maggie have proven to be the perfect parents for this little girl.  That is what you said, Maggie, isn’t it?  “God gave this little girl to us.  Who are we to question??”  Ellie is clearly proud to be Tessa’s sister, as she tells any stranger.  I am excited to see what is in store for our sweet girl.  Happy Birthday Theresa Lynn Lay!

mom 1

6 Comments »

Milestone madness

I swear to you, Tessa comprehends every single thing I say to her therapists. Just as soon as I tell them that she is struggling with anything, she masters the skill and I end up looking a little silly.

Tuesday, our PT and her supervisor came for her weekly session and I had an extensive list for them. I expressed that I was still concerned about her refusal to use her left hand. I shared that she was sort of sitting, and sort of getting into her sitting position from laying down, but that she would not lift her left hand.

As of Friday, we have a sitter. And she’s a sitter who can get herself into a sitting position all by herself. And while she is there, she can play with toys!

I also vented a little about how I have to change the way I laugh because every time I laugh loudly (which is often), she cries. She doesn’t cry when anyone else laughs and I’ve been starting to get more than a little dismayed at being the sole cause of my child’s tears.

Since Tuesday, we have not had even one meltdown.

And, the icing on the cake is that our Little Miss started clapping yesterday. I didn’t even complain about that one yet! 😉 It’s very quiet and sporadic, but it is really happening.

I wonder if I start complaining that she can’t change her own diapers, will she pick that up right away??

Needless to say, it has been a week full of Tessa milestones. This will be our first week of four-days-a-week therapy, along with John’s last day of grad school, his graduation, two evening service projects with my National Honor Society kids, and the usual chaos that comes with the end of the semester for two teachers. We’ll see you on the other side…

And now, cuteness:

IMG_6835.JPG

IMG_6810.JPG

IMG_6831.JPG

7 Comments »

Miss Cranky Pants

Three times I’ve written this and three times, it has been deleted.

Ladies and gentlemen, I am 100% stuck in a rut.  Miss Cranky Pants?  Oh yeah, that’s me.

My hope is that just throwing this out there will somehow help me to snap out of it. I have been told many times that my feelings about developmental delays will ebb and flow… It’s so true. I don’t know if this crabby phase is an “ebb” or a “flow”, but it’s where I am right now.

This all began (kind of) with the planning of Tessa’s first birthday party, which is in a month. I’m thinking a lot about the milestones that are commonly associated with the first year – walking, using a cup, eating table food, first words – and thinking about how hard she is working and how far away these milestones seem to be. She will do them all in her own time. Today, I just wish that one thing would be easy for her. Just one.

I think a lot of this was magnified by the Thanksgiving holiday and time to catch up with family and friends. I found myself talking a lot about what we are working on in therapy and how she is doing. I have an idea in my brain that people have expectations for what an almost-one-year-old should be like. And somehow, I have convinced myself that if people see her and she isn’t that way, the way they are expecting, then they will feel bad for us. Pity is the absolute last thing I want.

She’s so little! Someday, she’ll have her own personality and talents. They are already locked in her little brain somewhere. Because of Down syndrome, the puzzle is a little trickier to figure out, but her strengths will emerge. Rather than frustration, what I really want to feel is cheers for how hard she has worked and how far she has come. She’s army-crawling. She’s holding her own bottle. She’s mostly sitting. She’s babbling like crazy. It’s progress.

In all of this, I would change nothing. Just as I would not change any of the aspects of myself that I struggle with, neither would I in her. All of this serves a purpose. All of the ebbs and flows and smiles and tears and everything else that comes along with an extra chromosome is part of her role in this crazy world. She and all of us are better for it.

There. I’ve said it. I’m in a funk. But I’m feeling better already.

A little cuteness, perhaps? Just one picture today. It’s Tessa, in a restaurant high chair for the first time, while out on a special date with Mommy and Daddy all by herself. Just try not to smile when you see this face…

IMG_6781.JPG

7 Comments »

On letting go

I shared the following exchange on my Facebook page recently. I was speaking with one of my students. All of the kids are fairly “at risk” (struggling to maintain good grades) and this particular girl has been feeling very overwhelmed and unable to catch up.  She spent awhile telling me that she felt like she just can’t learn.  And then she told me this…

IMG_6722.PNG

People really don’t know Down syndrome.

47 chromosomes. Low muscle tone. Ability to exceed expectations. People-first language. Sensitivity to people with different needs. Highly insulting nature of the “r” word. Some people know. Many, maybe even most, do not.

I cannot hold someone accountable for what he has never been taught.

I wrote on Friday about how it drains me to hear the “r” word. In the moment, it’s really crummy. But it’s Sunday now, and I don’t even remember who the kids were that said it. One of my dearest blog friends (who shares her amazing story here) asked me if I had any tips on how to deal with it. My approach comes down to three things:

1. Teach: Remember that people don’t “get it” and we have to teach them. The intention of a person who uses the wrong terminology (like “Down’s baby) is not usually mean-spirited.  Sometimes it is.  Still, we can very simply explain and correct.  When it comes to the “r” words, I usually say something like “hey, so that word kind of bothers me.  Could you use something different?”

2. Don’t preach: Remember that it’s highly personal for us, but not for them.  Ranting and raving doesn’t help. I realize that it should be common sense to avoid the “r” word, but it isn’t. Venting at length does nothing more than make people feel uncomfortable with me. I cannot win all the battles and I win less when I fight with anger.

3. Move on: Let it goooo, let it go! (Are you singing in your head now??) Sometimes, I have to come home and vent to John, but then I stop dwelling on it. For me, the best way to move forward is by treating it as minor in the first place. My student who thought she had Down syndrome? That situation could be handled in three ways… I could ignore it (and probably get mad when it happens again), I could be angry about it (and make her feel upset and I’d probably end up a crotchety old woman), OR, I can see it as a chance to open someone’s view of the world.

The bottom line is this: just as I wouldn’t expect the average Joe on the street to understand the complexities of my child’s needs, neither can I expect that he would understand the feelings that I carry about this beautiful child. When it comes to interacting with the world, I choose empathy. I choose compassion. I choose love. And while I cannot expect the rest of the world to make that choice, I can choose to lead by example.

IMG_6723.PNG

2 Comments »

Lesson #30: Things I’ll never say again

1. “As long as it’s healthy.”

It doesn’t matter.

I said this a lot during both my pregnancies – especially when people would ask what gender we were hoping for. It was an easy response… “Oh, we don’t care, as long as it’s healthy.” I worry a lot about that qualifier and the message it sends to other parents – as if anything less than healthy makes a child unwanted. Nobody wants their child to hurt. However, I really cannot say that I would prefer a child without extra needs. In this family, if a child is not healthy, it will still be loved.

2. Is he (_____)ing yet?

It doesn’t matter.

It’s become a predictable habit of mothers these days to talk at length about what babies are doing. We share their weights and heights like trophies of our success as mothers –
the bigger, the better. It’s silly, really. And to a mom who is worried about her child for any given reason, it can be alarming.

I’ve said this before – it’s very freeing to have a diagnosed child who we know is on her own schedule for pretty much everything. But for those children who have no extra needs and are just a little behind, or those who do have extra needs but aren’t diagnosed yet, the comparisons can be unsettling. Even scary. So I’ll leave the milestone questions to the doctor.

3. Can I hold the baby?

When offered, I will, on occasion, accept. However, I’m not asking for the simple fact that I don’t want a mom to have to feel awkward about telling me no.

When Tessa was a new baby and people asked to hold her, it freaked me out. This really wasn’t about the germs, it was about her floppiness, lack of head control, and preference for hyper-extending her arms. I once (jokingly) asked the PT if I needed to coach every person who held her, fully expecting that she would tell me no, as long as it was a short period of time. And then she said “umm…. Unfortunately, yes.” Oookee dokee. It got really awkward for me, trying to explain to so many people why they couldn’t just hold her like they want. And since you can’t always “see” extra needs, nor do you know if a mom is uncomfortable saying no, I prefer to just avoid the situation altogether.

There is no need to walk on eggshells around other moms, but sometimes, a little empathy… a little consideration for others and their stories… that is what can make all the difference in our interactions with each other.

4 Comments »