Yo soy La Lay

adventures in family, faith, and Down syndrome

Lesson #16: Babies can do Physical Therapy, too!

Our family loves (well-meaning) questions about our kiddo. We share our life with you all because we like people to understand how “normal” our life is – even though we have some fairly unique characteristics.

We get the most questions about the therapy that Tessa gets through Early Intervention, so I’d like to break down what her sessions look like for each area. Today, we’ll tackle Physical Therapy (PT).

We talked about Tessa’s low muscle tone at little bit at the beginning of this month. Because of the low tone, gross motor skills (rolling, crawling, walking, sitting, etc) are more challenging and take more time to master. On top of that, I think there is a natural human instinct to do things the easiest way possible. This can cause long-term issues, so the overarching goal in PT is to teach Tessa her gross motor skills and to teach her to do them correctly. If you remember back, Tessa started rolling at some ridiculously young age (like, 3 weeks or something). While we were so excited about this, it was tempered by the fact that she was doing it wrong. She would arch her back and roll over on her head. Not such a good long-term method.

Tessa has always been a mover. Since the first flutters in my belly, she has not stopped. One of the original evaluators actually wondered if something might be physically bothering her that was making her squirm. In the NICU, they called her “the swimmer” because of how she flailed her arms and legs.  Her motivation to go, go, go is high. So, PT is her strongest area of development. John wanted an athlete – he has one in Tessa!

During PT, her therapist works with her on her various skills. Right now, it’s crawling, sitting, and weight-bearing on her feet. To practice crawling, we physically help her move her hands (and sometimes knees) to teach her to move forward. In sitting, we do a lot of work on an exercise ball, teaching her to balance and not to throw her body backwards. She also likes to use her hands for balance when she sits, so we work to motivate her by giving her toys and objects that help her reach up and grab. She is mostly motivated by Mardi Gras-style beads and her own reflection in the mirror. 😉

Two of Tessa’s main supports in PT are her “hip helper” pants and her kinesio tape. She wears the hip helpers when she’s practicing her crawling. They are little spandex shorts that are sewn together through the legs.  She wore them for awhile when she first started EI to keep her hips from being malformed.  Now, she likes to stick her left leg out in a “splits” position when up on hands and knees and her little hip helpers keep her from doing that.

Kinesio tape is an interesting little invention. I have absolutely no clue how it works. Supposedly, it helps activate the muscles and kind of “reminds” them to work.  It seems strange.. . However, anecdotally, Tessa went all summer without it and it seemed like she slowed down. Once we were taping again in August, she has made huge gains. It may or may not be a coincidence… But I’m not opposed to trying!

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We love PT and we love Rachel, Tessa’s therapist! She has sessions once a week.  We try to practice with her when we can, mostly just through the way we play with her.  We do our best.  🙂  Up next, we’ll share about Speech!

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Lesson #15: We owe a lot to parents of the past

This is part of the 31 for 21 Blog Challenge!

I’m cheating a little tonight…. not because I don’t have time to write.  Actually, one thing I DO have tonight is time.  However, I want to share the words of another mom… words that I’ve been trying to find a way to express for quite some time and frankly, she does a better job than any of the drafts that I have come up with.

Please click below to read…

To the Mother of the Adult Son With Down Syndrome in the Grocery Store Today

Tessa, 20 days old

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Lesson #14: (Not so) Defining Characteristics

This is part of the 31 for 21 Blog Challenge!

It is incredibly difficult to take pictures of an infant who has recently discovered that she can pivot on her belly.  Especially when said infant is highly motivated by the pretty pink iPhone case.

I did my best.

When Tessa was born, both the NICU nurse practitioner (Amanda) and the geneticist that we eventually talked to were sure that Tessa had Down syndrome.  I was very angry with them for a little while… she looked typical to me and I didn’t appreciate their insistence that she had it without any proof.  I couldn’t see Down syndrome in Tessa.  They could.

I can see it now.

I should reiterate that I don’t see Down syndrome when I look at Tessa now.  75% of the time (that’s a total random guess), it’s nowhere in my brain.  But I get what Amanda was saying.  Typically, children with Down syndrome display some or all of the following characteristics:

Sandal toe, a guarantee that no nail polish from your second toe will smudge when it touches the big toe (Am I the only one who has that issue??)

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Straight palmar crease (This is a miracle shot.  Tessa’s OT would be proud that I could hold her hand open long enough to get this):

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Almond-shaped eyes (which crinkle so sweetly with every laugh and smile, and look almost cartoonish when she’s upset):

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Flat nasal bridge… an incredibly difficult picture to get when this little booger just wants to look right at me all the time.

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Brushfield spots… little white sparkles in the blue of her eyes.  These are one of my favorite characteristics (and one of the trickiest to see on camera because of her dark blue color)  🙂

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Ultra cuteness

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There are pros and cons to seeing it.  Pros and cons to people looking into her face and knowing.  That’s a different post for a different day.  This beautiful girl has Down syndrome.  Look and her and you will see it too.  What you do with that information, with the recognition of what makes her unique, is what makes the difference.

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Lesson #13: Advocacy never sleeps

This is part of the 31 for 21 Blog Challenge!

ad·vo·ca·cy

noun \ˈad-və-kə-sē\

the act or process of supporting a cause or proposal : the act or process of advocating something

There are a lot of days that I wake up with a take-charge attitude toward advocacy.  Most, even.  When connected to a community who advocates for special needs, there’s always a cause to fight for.  Some magazine posts an insensitive article about birth defects.  A television program uses the R word inappropriately.  Some crazy scientist tells me that my child is suffering.  Yes, every day, without fail, there is a need for vocal campaigning.  Every.  Day.

Trust me, I’m all about fighting the good fight.  I’ve never been one to shy away from (politely) sharing my feelings.  If someone posts a link to a news story that isn’t supportive or encouraging, I do my research and then I’ll call someone out on it.  I champion the causes of acceptance, love, understanding, empathy, and inclusion through words and actions.  I am all for preaching to the choir, preaching at the devil, even preaching to a brick wall if no one else will listen.

Most days.

Some days (not many, but a few) I’m tired.  I can’t fight every battle.  I do think it’s incredibly frustrating that something happened, but today, I cannot fight.  Because even if advocacy doesn’t sleep, sometimes I must.  Without a break, it’s an effort that isn’t sustainable.

Thankfully, there is a huge network of moms out there ready to advocate for inclusion and acceptance when I can’t.  Not just moms, actually.  A community of supporters stand in the wings, picking up when I’m tired.  I do the same for them.  Together, united behind a worthy cause, our advocacy never sleeps.

True.

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Lesson #12: If I don’t stop blogging, I’m going to be in trouble.

This is part of the 31 for 21 Blog Challenge!

We just returned from a great weekend away.  My parents watched the girls while John and I had the chance to gallivant around our old college town, reminiscing about days on campus, sleeping in until 7 am (!), eating in nice restaurants… it was lovely.

We missed the girls.

Now we’re back and I’m supposed to help John paint our kitchen, which means that you don’t get to hear a lesson tonight.  Because really, if I don’t get my butt off the couch and pick up a paintbrush, there will be mutiny and I’ll have a half-painted kitchen for our Halloween party on Friday night.

That is all.

Three-week-old Tessa.  Too cute for words.

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Lesson #11: Daycare is just the right thing to do (for us)

This is part of the 31 for 21 blog challenge!

There was never a doubt in my mind that I would be a working mom. Some girls imagine themselves taking care of babies and running their households. That was never me. I do all of that stuff, but I also have a job that I love and my kids go to Miss Julie’s house for their daytime care.

I’ll tell you more about Julie when I have a keyboard and I can do her justice. For now, suffice it to say that she has been a true blessing for our family. My girls adore her and her house.

What I love about daycare for Tessa is that she is totally thriving surrounded by older, typical kids. While playing with her sister gives her some exposure to words, movement, big-kid stuff, play at daycare is even more busy and complex. It has been her normal life routine for so long, since she was just three months old. It’s good for her. Case in point:

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Julie sent me that picture yesterday. It looks boring enough, just four kids hanging out around the box of Frozen toys. But the amazing background story is that Ellie and the other two were playing excitedly with these toys and Tessa army-crawled her way across the room to see what they were playing with. Motivation. Example. Acceptance.

She is in the right place.

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Lesson #10: They’re different.

This is part of the 31 for 21 blog challenge!

(Another post from John tonight. It’s a short one (It’s Friday!!!). Soon, he’s going to need his own log-in name. 😉 )

This is a universal truth for parents of more than one child. Our children are very different. Not because of the extra chromosome, just because they are. Simply put, Ellie will make you laugh hysterically. Tessa will make you glow.

a little flashback to summer fun

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Lesson #9: Mornings are far more complicated

This is part of the 31 for 21 Blog Challenge!

(John decided that he wants to contribute…. so this one’s from him.)

The only reason I’m doing this is because Maggie is going to burn out if she doesn’t get some blogging help…and because her blogs need something funny as opposed to serious.

If you are a parent you must know the joy of getting your kids out the door (especially when you have somewhere to be).  My morning is funny.  Mag is out the door before the kids are awake and to be perfectly honest, she doesn’t have a clue about being under pressure.  I know what you’re saying… Maggie was with Tessa in the NICU, Maggie was at Tessa’s ear surgery all alone, Maggie works with the therapists to help Tessa…but she doesn’t get the joy of helping these little humans look presentable before day care.  Therefore, she doesn’t know real pressure.

Here’s a story about real pressure:

This morning Tessa wakes up at 4:00 am because apparently she’s trying to get a head start on daylight savings time.  We have a talk while she eats her bottle.

Me: “Tessa, you need to sleep in later than this.”

Her: “Dad, you need to wake up earlier, today is a new day and you’re wasting it by sleeping.”

Me: “Yes, I understand your point, but you see, Daddy needs rest in order to have patience with your sister.”

Her: “Look, when you share a room with her then you can talk to me about patience, until then, just pass the formula.”

Then Ellie is awake.  At this point we are playing fictional character lottery.  What is fictional character lottery you ask?  Well, every morning when Ellie wakes up she is reincarnated as one of her favorite characters.  It could be Anna, Elsa, Aladdin, The Little Mermaid, Princess Sophia.  In any case, I begin the egg shell walk because if I get the wrong character, our little actress will be upset.  I am a lawyer during cross examination:

Me: “Good morning…Soph-”

Her: “I’M NOT SOPHIA”

Her head goes back under the covers and I let the anger hang in the air.

Me: “What I meant to say was…Good morning…um…Anna of Arond-”

Her: “I’M NOT PRINCESS ANNA”

I’m 0-2.  Third time is a charm or a strike and by now I’m going to be late as it is, so I may as well just keep throwing out names.  I say the entire cast of Frozen in 2 seconds.  She is staring with a look that says, If you think for one second that I’m going to reveal my identity this easily, you should turn around, walk to the bookcase, and re-read What to Expect When You’re Expecting.  Because in that book it clearly states that I AM NOT AN INFANT!

I let her pick out her clothes…part pajama, part scuba gear, and give her some goldfish crackers so I don’t awaken the hangry beast.  Meanwhile, Tessa needs to get dressed.  She wears something cute because she doesn’t realize she is opinionated about what Mags puts out for her to wear.

Ok, Let’s recap…Tessa is dressed, Ellie is dressed.  Here comes the hairbrush.  Combing Ellie’s hair should not be the dramatic scene that it becomes.  Never having had long hair, I suppose I am more sensitive to her “pain” when she gets her hair brushed.  She is able to avoid me at every turn.  If Ellie could move all day like she moves when she is about to get her hair brushed, I would sign her up for the NFL and put her on my fantasy football team because no one could catch her.  She’s like a greased chicken (if there is such a thing).

When I finally set her down to brush her hair we have a heart to heart.

Me: “Ellie, you have to get your hair brushed so you can look presentable”

Her: “Go brush Tessa’s hair, please”

Me: “Tessa doesn’t need her hair brushed, you are the person who needs their hair brushed.”

Her: “Can I brush your hair?”

So, of course, I let her brush my hair to be an example of courage in the face of the comb.  She begins to brush my hair and she looks at me and demands, “Cry.”

Me: “I’m sorry?”

Her: “Cry when you get your hair brushed.”

Me: “You want me to-”

Her: “Cry.”

I shed a few pretend tears and we trade places.  She sits patiently now that justice and fairness has presided over our situation and her hair is now brushed.  (Although, it still looks terrible because I tried to put it in a ponytail but it never looks as nice as when anyone else puts it up).

The finish line is in sight.  We are almost to the door.  We walk to the car.  We sit.  We belt.  We smile.  We realize we have left our favorite pink fleece in the house.  We need to get it.  We will not be calmed.  We will not be reasoned with.  We will all go back in to the house together.  We are now wearing the fleece.  We drive.  We arrive. We drop off.

I realize this ranting sounds like lies and exaggerations.  This is real life.  It is our life. Well, ok, Tessa can’t really talk, but that is a minor exaggeration.  But I didn’t tell you the best part.  When I drop them off they become two great, well-behaved kids (95% of the time).   I wish Ellie a great day and tell her I love her.  She promises me that she will be more well behaved in someone else’s care than mine.  Tessa smiles…it looks like a pity smile but who can tell.

I can’t emphasize this enough…This is not a complaint!  This is hilarious.  I truly wish you could have this experience because while the pressure is on, the time is crunching, and when everything seems like its falling apart… these kids make me laugh… They’re both nuts!  They fit right in. 🙂

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4:30 am Tessa

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Lesson #8: EI, EI, ooooooh do we have goals!

This is part of the 31 for 21 Blog Challenge!

Tessa’s disability qualifies her for Early Intervention (EI).  Any child who is diagnosed with a disability or developmental delay can receive these services in some way.  Most kids would have to go through a series of tests to determine if they qualify for Early Intervention.  Down syndrome is an automatic qualifier.

In Illinois, Early Intervention is not free.  However, the out-of-pocket cost is very low in comparison to what one might pay for therapies outside of EI.  The monthly charge is on a sliding scale based on income.

Potential qualifiers for EI go through an initial evaluation to determine what services are needed to help the child.  The initial evaluation was the craziest part of the whole process for me.  A lot of professionals sitting in my living room, asking a million questions about Tessa and her birth and her progress (at four weeks old) and then asking what I would like her goals to be… not my shining moment as a mother.

What goals would YOU have for your four week old baby??

So anyway, an evaluation happens.  After the evaluation, when we have determined what the delays are, we write an Individualized Family Service Plan (IFSP).  It explains our goals for Tessa, written in a way that explains what we want her to do (and why).  This document helps direct the services that we receive.  Services received through EI must support the written goals, so it is important to write a plan that covers every aspect of your child’s development that may need help.  Here are Tessa’s goals:

Tessa will continue to progress in her feeding, be able to self-feed and eat a variety of textures and temperatures.
Tessa will begin to communicate with people in her environment (something was added
here about all different types of communication, but I don’t remember how we worded it).
Tessa will be able to sit and play without assistance.
Tessa will interact with toys and people in her environment in all of the positions (sitting, back, tummy).
Tessa will begin to move independently by scooting, crawling, and walking

IFSPs are reviewed every six months.  If we want to add any services, we have to have a meeting in which we decide that it is necessary.  John and I are of the opinion that we should “frontload” the therapy now, while we have time (ha.) and it is covered under EI.  The hope is that we won’t have to have quite as much when Tessa is older.  So, she has speech/oral motor therapy, physical therapy, and occupational therapy each once a week.  We currently have developmental therapy once a month, but are planning to increase to once a week in another month or so.  Speech and O/T both go to daycare to work with her.  We have D/T and P/T at home.  🙂

Tomorrow, more on what therapy looks like with a little baby.  I bet you can’t wait.  😉

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Lesson #7: Tessa makes some people uncomfortable

This is part of the 31 for 21 Blog Challenge!

I will preface all of this by saying that the vast, vast majority of people that we interact with make no issue of Down syndrome.  As a matter of fact, we haven’t had a single person express anything other than complete joy about our baby girl and her extra chromosome (at least to our face).  However, it is also not lost on me that there are a couple of people in my life who have literally dropped off the face of the earth since Tessa was born.

We are proud of Tessa and we will bring her into the community and show her off.  She will participate in all of the activities that she wants to and sometimes she’ll do things differently than other kids.  She will go to Chili’s for dinner with us.  She will putz around at the zoo.  She will sit restlessly through church.  She will go Trick or Treating for Halloween and we’ll take her to the Chicago to see the Christmas trees at the Museum of Science and Industry.  She will look different and probably sound different doing all of those things and we are just fine with that.

We know that others are not.

We know that sometimes people will stare because they don’t know what else to do.  Or sometimes, they will refuse to meet our glances because they think that somehow, that’s better for everyone.  Someday, someone will be impatient with her and will grow angry with her slow and steady pace.  I cannot always save her from those people.

I will not be surprised the day that I get a call from the principal saying that Ellie has punched some snot-faced boy in the nose for calling Tessa the r-word.

This is also part of our reality.  It’s a part that we are trying to change, or at least minimize, but we know it’s there.  I know that there are people who are uncomfortable with the differences that Tessa represents.  It’s kind of sad.

To the former friends who have since left, we truly wish you all the best.  Mostly, we hope that someday, you will open your heart to experience the light and love that Tessa brings to our world.  It’s amazing.

And, for the record, the day that I get the call from Ellie’s principal, she is most certainly gonna be in trouble.

Free Printable scripture art.

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