Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear EI Team

Dear Karen, Karli, Lori, Suzanne, and Beth,

And also Kim, Rachel, Joan, Shannon, and Kate,

And Sue,

Look at you all!!  We have been so blessed with not just one, but two amazing Early Intervetion teams.  I had been so terrified to leave our old home because it would mean a new CFC and a new team of therapists.  We had an amazing team, who Tessa mostly liked, or at least tolerated, and some of the moms can be so negative about their experiences with therapists (and rightfully so).  So we when we moved, I was nervous that we couldn’t possibly hit the jackpot twice.

We did!

You all have been such a positive influence on Tessa and our family. You give great suggestions for modifications that make her path more accessible.  You help us help her and made it so easy to get the equipment that she needs.  But what has been the most influential is that way that each of you has talked to us about her and her unique strengths and challenges.  It’s never about kids with Down syndrome, it’s just about Tessa.

Too often, I hear moms distraught by the delays that their child is experiencing.  They lament the IFSP meetings where the therapists rattle off all of the things that the child isn’t doing.  None of you has ever done that to us.  We aren’t unrealistic; we know that she is delayed.  All of you have helped us navigate those feelings and accept that her timing is all that matters.

As we head off to school in a few short weeks, I’m again fearful of leaving the safety net of our EI team.  As you all keep telling me, she is ready for school, and she is going to love it.  But without your home visits and your detailed reports, and your suggestions for what we can do at home, I’m so nervous!  Her preschool teachers sure have big shoes to fill.

Thank you so much for what you do. You are overworked and underpaid, but so so loved.

All the best,

Tessa’s Mom

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Dear Kim and Karli

Dear Kim and Karli,

This afternoon, when we attempted to get Tessa to walk across the room, she turned to John and said “No Daddy, stop it.” Clear as a bell.  I’m sure I’m supposed to be annoyed by this, but I bet you can guess that we just burst out laughing because it was a speech victory in our minds!

Later, Little Miss Carnivore asked us to take away her half-eaten brownie and for us to give her more broccoli.  We worked for so long on getting her to eat a real fruit or vegetable and look at her now, preferring the broccoli!  

We owe so much of what she can do to the two of you.  She has come so far… from that little lump of a baby who took an hour to drink a bottle while laying on her side to now happily joining in our full family mealtime, veggies and all.  She is going to start preschool with lots of words and signs to communicate her needs.  And she’s going to rock it!

Neither one of you have ever used the word “can’t,” nor have you ever predicted anything about her based on Down syndrome.  You have never told us that she just does something because of her diagnosis.  You have treated her as Tessa, a little girl with as much potential as anyone else.

We are so blessed to have worked with both of you.  Thanks for giving us so many tools to help our girl, and for being so supportive of our family.  I know that Tessa put you both through the ringer sometimes… especially you, Karli, once we put “persistence through non-preferred tasks” into her ISFP.  LOL!  I know she can be quite the character during her sessions. You both have just been lovely to spend time with.  The new littles that you work with are so lucky to have you.

Thanks so much for everything,

Maggie

Normal (messy) family meal time….

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31 for 21 Day 4: A little off the topic of advocacy

We interrupt this regularly scheduled program to share an exciting morning.  Our thoughts on advocacy will continue tomorrow, but I thought it was important to share that Tessa and I had our first conversation this morning.

At an unreasonable hour (5:56 am), Tessa was being quite loud in her crib, so we took her out and made her crawl around in bed with Mom and Dad.  After about half an hour, she got a little restless.

(All words were signed and spoken by me.  Tessa spoke “down” but just signed the rest.)

Tessa:  Da… Da… Da!  (down)

Me: Oh, you want to get down from the bed?

Tessa: Da. (points forcefully at the door)

Me:  Downstairs??  No, wait.

Tessa: Da. Eat. Milk.

Me: No, wait. No milk, no eat.  Wait.

Tessa: Cookie.

Me: Wait.  No cookie.  Wait.

(pause)

Tessa: Cookie please.

BOOM.  Tessa for the win.

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Definition #3

 We re-did our little “office” nook in preparation for The Big Move.  It’s got a cute little bookshelf and cute little chair and it’s incredibly cozy.  While it is not ideal for blocking out the noises of the chaos in our home, it is a partial escape.  I’m still tuned in to what everyone is up to, but I just put my feet up and listen.

I find myself trying to spend a lot of time up here these days.

Somewhere in the mix of this…

and this…


 and this…

and this…

 
there needs to be peace.  
It is hard to come by right now.

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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…

photo (15)

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5 months

Tessa has been five months for a little over a week.  I have not been putting off this update, I’ve have just been waiting for some calm so that I could get all the information in one post.

And then I realized that there is no calm and decided to write it anyway.

At four months, we decided to schedule her ear tube surgery and bronchoscopy.  Then, as is well documented on this blog, we had the pneumonia hospital visit and subsequent recovery.  Now, we wait.  Surgery is scheduled for June 5th, which puts it after school gets out (no time without pay, yay) and during the time that I was originally scheduled to travel to Costa Rica.  Clearly, God was keeping me back for a reason.

Here is where we are at in terms of therapy:

Physical Therapy

Tessa is a rock star on her tummy.  She is right at her age with her “tummy skills.”  She is still wearing kinesio tape to help activate her muscles.  I still think the idea of tape on the belly is kind of bizarre, but we’re going with it.  She’s slightly more delayed with her sitting skills (about a month).  We have had the chance to break out the Bumbo seat and while she can’t last it in for a long period of time, she does kind of like to see the world from a new perspective.

photo (2)

The therapist has recommended using cabinet liner to help stabilize her when she sits in the Bumbo or when we do “couch sitting,” which is when she sits using the corner of a couch for support.  Creative, cheap, useful… It works.

Tessa’s new strange habit is this loud groaning sound that she makes regularly while tensing up all of her muscles.  We’re glad that she’s practicing using the “right” muscles (the ones that flex), but the groan kind of freaks people out.  My theory is that she just likes to hear her own voice (just like her mother).

Speech Therapy

Upright feeding is going great, hurray!!  We are at a point where anyone who wants to can give her a bottle and that makes me a very happy momma.  The next step is building up her core and mouth muscles to prep for solids.  We hope to start with some cereals this summer, but need to make sure that her body is ready for the different textures.  We do mouth stretches with her and use a little tool that looks like of like a solid straw with ridges on it to massage her gums and tongue.  I’m happy with her progress here, but curious to see if the bronchoscopy will reveal anything interesting going on inside her throat.

Here, you can see how happy Tessa is to have to sit at the dinner table, but not get any cupcakes:

photo (3)

Developmental Therapy

So we’re seeing some more pronounced delays here, but the victory is that progress is happening.  Tessa loves people.  All people.  All faces.  All toys with faces.  But things without faces?  Not so much.  She is reaching, which is good, but we need to get her hands to open up a little more.  She can’t interact until she gets motivated to grab at things and explore, so the new development in developmental therapy is that it’s time to call in occupational therapy.

Sorry, that was a lot of terms.

Basically, Tessa’s occupation is to play, so we need to make sure she can do that effectively.  We are going to get her started with some occupational therapy to help this progress… because while Ellie is a great example for Tessa, she does a lot more toy-swiping than toy-giving.

photo 1

photo 2

photo 3

(this is the best of my failed attempt at a cute picture of these three)

Overall, we are joyful at the growth in both of our girls, prayerfully optimistic that surgery will go well, and ecstatic that our summer is finally here.  Just three more days of class for me, another week for John and we will have lots of this…

photo 1 (1)

and this…

photo 3 (1)

and hopefully not so much of this… but I had to send some love to my husband (and dad) for fixing my car…

photo 2 (1)

Welcome back summer, we’ve missed you.

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