Yo soy La Lay

adventures in family, faith, and Down syndrome

Lesson #26: It still goes so fast

Someone told me that I would get a “prolonged” infant phase with Tessa.  I was assured that I would have more time to enjoy each stage because it would take longer for her to grow up.  And I’m sitting here today wondering who that person was, because they lied to me and I want to find them and tell them.

One hour old baby Tessa

IMG_3908Don’t get me wrong.  We are very, very much still in the infant phase.  Tessa is nothing like a typical ten-month-old baby.  I’m enjoying all the moments, but it still doesn’t feel like time has slowed.

One month old baby Tessa

IMG_4347You see, this weekend, a little tiny tooth popped through Tessa’s bottom gum.  And it kind of has me in a tizzy.  Because I really like her gummy grins  A lot.

Four month old baby Tessa

IMG_5028Five month old baby TessaIMG_5426It took us a little while to get them… and now I love each and every one.  And I know that it will still take a long time before we have a full on, toothy grin.  I just want a few more of these to savor for now…

Seven month old baby Tessa

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Nine month old baby TessaIMG_6276

Time is flying….

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Lesson #22: We take our colds very seriously.

Sitting in the doctor’s office, staring at the little yellow box.  It keeps beeping.  Tessa’s kicking the nurse, willing her to leave her finger alone.  We wait (im)patiently for the reading to appear and it doesn’t seem to be in any rush to do so.  There are fewer moments these days that feel longer than the ones that separate you from a potential hospital stay.

This time, the reading was good.

Sinus infection.  Pink eye.  Round of antibiotics.  Have a nice day!

Colds are a challenge for some children with Down syndrome.  There are a few reasons for that – smaller airways and sinus cavities, low muscle tone (slowing becoming the bane of our existence), which makes it a challenge to build enough strength to cough out the gunk…  All I know is that I’m not interested in another stay in the PICU.  So, I’ve become the hyper-vigilant Mother Bear that I was trying so hard to avoid.

When Ellie was younger, I had no fear about her catching a few minor colds.  Is that odd?  It’s not like I hoped that she would feel crummy or that she would have to deal with the symptoms.  Goodness knows that the sleepless nights weren’t thrilling.  I was just all about building up her immunity while she was young and exposing her to colds is one way to do that.  In no way is this my approach with Tessa.  I have no interest in exposure.  We aren’t living in a bubble, nor do I expect every person who has a sniffle to stay away, but I’m certainly more cautious about who holds the baby.  I would never (Never.) have taken Ellie to the doctor for the cold symptoms that Tessa displayed today.  But this is a whole new ballgame, isn’t it?

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(By the way.. do you see the new greenish paint in my kitchen??  LOVE it.)

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Lesson #20: Developmental Therapy is a thing

This is part of the 31 for 21 Blog Challenge!

Pre-Tessa, I had heard of Physical therapy, speech therapy, and even OT wasn’t completely lost on me.  However, Developmental therapy (DT) is a totally new concept.

We get DT once a month, but now that Tessa is sitting, we will increase to once a week in November-ish.  A developmental therapist is kind of like Tessa’s first teacher.  She works with her on intellectual development – concepts like “in and out,” cause and effect, object permanence, all that fun stuff.  During sessions, we play with toys and watch to see how Tessa interacts with her environment.  In the beginning, we worked on getting her eyes to track objects and to show interest in faces, then toys.  Our DT also works with our family to get us connected to the Down syndrome community.  We talk about our own emotional development, our concerns and frustrations… I don’t know if this is in her job description, but Shannon has been a bit of a social worker along with Tessa’s DT.  🙂

Right now, our major hurdle has been Tessa’s startle response.  When anyone (besides Ellie, that is) laughs loudly, Tessa displays the same kind of reaction that you might see in a child who was just given a shot.  Sweet little pouty face, big fat tears…. She has the same reaction to dogs barking.  Other loud noises don’t affect her at all.  We sit right next to our Praise Team (essentially, a band) in church and she has no negative response to the music.  When we play peek-a-boo with her, she often cries when we reveal our faces.  Some strong smells bother her as well.  I know that many people who interact with Tessa feel bad when she gets upset.  However, it’s important for them to know that we would rather teach Tessa to react appropriately than to create an environment in which she doesn’t have to deal with this stuff.

Sometimes, children with Down syndrome can have a sensory processing disorder that causes them to struggle with different types of input.  We don’t necessarily think this is something that Tessa is dealing with, but it’s certainly part of our conversation about her development.  It’s something that we will continue to work on with her DT and also in occupational therapy.

Soon, Tessa will be at four therapies a week.  Sometimes, that can feel like a lot.  Right now, two therapies (Speech/OT) are at daycare and two (PT/DT) are at home.  We just recently changed her Speech time so that I could potentially be there to help out with that.  Recently, she hasn’t been able to get through a session of speech without crying uncontrollably or shutting down and going to sleep, so we hope that my presence will help her manage her feelings better.  So far, it has worked.  I don’t know if it is realistic to think that front-loading all of the therapy will help her in the long run or not, but if nothing else, the consistency in our weekly routine is nice.  Plus, the therapists give some really great tips for working with Ellie, too.  She is more work than her sister most days!!

Still cute when she cries.

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Lesson #19: Occupational Therapy: No occupation required

The most recent addition to Tessa’s therapy regimen is Occupational Therapy (OT). Around six months, we noticed that Tessa wasn’t really engaging her hands. In fact, she spent most of her time with her hands balled up tightly in fists. There was very little reaching for objects and if she actually got hold of something, it was released almost immediately. At her IFSP review, we all agreed that it was time to add weekly OT.

OT focuses more on the fine motor skills required to function. Since starting with Kate, Tessa’s therapist, we have seen great strides in her ability to use her hands. She will reach for toys and play with them. She plays with her toes. When on her belly, she will use her arms to push up. Most of the time when she does that, she has her hands open.

We are still fighting with her left hand. She has a tendency to keep a couple of her fingers curled up when she’s pushing up onto hands and knees. She grabs more frequently with her right, using her left to stabilize her body. In therapy, we work a lot with engaging the left. Her issues are small, but on the radar.

OT is one of the therapies that Tessa gets at daycare, so I don’t have a lot of info about what a session might look like. However, Kate sends me detailed notes so that I can see how she did. Right now, just like in PT, we are working on sitting and playing with objects. We have to get Tessa to build strength in her core so that she can stop counting on her hands for stabilization. Kate puts her in a lot of different positions (belly, knees/hands, sitting, etc) and then uses different toys to motivate Tessa to reach for them. We’re also working on getting Tessa to hold her own bottle.

OT, PT, and Speech are once a week for an hour. The last therapy, saved for tomorrow, is Developmental Therapy. More on that tomorrow!

Sitting at 6 months (see the hands?!)

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Sitting now… Progress! (Also, the only happy Bears fan in the USA today)

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Lesson #18: Little babies can do Speech therapy!

This is part of the 31 for 21 Blog Challenge!

So, first of all, this happened:

photo 1 (6)Ellie was enthralled with her potty costume… Once her cousin Jimmy came over dressed as Curious George, it was over.  Somehow, Ellie convinced him to shed his costume so that she could wear it and then the two of them had a grand ol’ time pretending to use the potty.  Kids are weird.

A rough transition here…. on to Speech.

It was very perplexing to me that we could start Speech therapy on a 6-week-old baby.  However, with Tessa unable to take her bottle in an upright position, we were set up with a type of Speech therapist who specializes in Oral-Motor therapy.  Oral-Motor therapy teaches a child awareness, coordination, and strength of the muscles of the mouth (all related to that low muscle tone that we keep talking about).

(On a side note, because I know some are curious, no, my children have not really been nursed.  Ellie got 5 days and Tessa got 12.  That’s a whole other story.)

During a therapy session, we work a lot on building strength in her core muscles.  When you think about eating, you use muscles throughout your abdomen, neck, and head to eat effectively.  One of the ways that we can improve Tessa’s eating skills is to build strength throughout her body so that she will be stable when she is sitting and can begin to use her hands to move food to her mouth.  This part of the session focuses on sitting and bringing toys to the mouth.

We also work on direct input to the mouth itself.  We started by providing input with a tool like this:

We use it to teach her tongue and gums what different textures and pressures feel like.  We also work on stimulating her tongue to move around the mouth to react to food.  Lately, we have graduated to putting small crumbs of graham cracker or animal cracker on the sides of her mouth so that she learns to move the food and to swallow it.

We always end our session with feeding.  Well, I shouldn’t say always.  Sometimes, Tessa gets really mad when she doesn’t get fed first.  And sometimes, she decides that she has had enough and just closes her eyes and goes to sleep.  However, we like to do some “spoon work” with the therapist when Tessa will let us.  🙂  We have found that a forward-facing presentation of the spoon (how you or I would put a spoon in our mouth) is challenging for her, so we present the spoon sideways.  However, we also continue to work on the forward presentation.  We are teaching her to get the food off the spoon and swallow.  She also has a habit of sticking her tongue out while she eats, so we have to wait until she puts her tongue in the right place before allowing her to take a bite.  Remember that a tongue is made up of a lot of different muscles, so her low muscle tone affects her ability to keep it in the appropriate place and use it effectively.

Our next steps with Tessa are to introduce a straw cup (recommended over a sippy cup) and to slowly increase the variety of textures that she will tolerate. We have begun to work on the actual “speech” part of Speech therapy with practice mimicking noises,  We have introduced signs for more, all done, eat, and drink.

The most important thing to remember is that while we have made modifications for Tessa and we do have to make a conscious effort to teach her some skills that may come naturally to others, our life is not work.  We don’t live in a constant therapy session, always practicing, practicing, practicing.  When we can, we do these things.  That is all.  There are weeks when we do a lot of practice.  Sometimes, we don’t.  Eventually, we’ll get there.

An excellent resource that I have just started to dive into is Early Communication Skills for Children with Down Syndrome.  Click on the blue link to find it on Amazon.

Blurry, but perfect…

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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 #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 #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 #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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Lesson #6: Tessa has the best faces

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