special needs | Yo soy La Lay

Mad vocabulary skillz

by Maggie

Today I took Tessa to the doctor. She has a cold and since her last cold put her in the hospital for a week, we are being more vigilant.

Yay, copays! :p

In any case, the doctor we saw was new to the practice, so I had the joy of filling her in on Tessa’s medical history. As we got to the end of the appointment, she said to me, “So, you must be in the medical field. What do you do?”

I wasn’t quite sure how she came to that conclusion. What I do is virtually the exact opposite of medicine. Do schools make people healthy?? No, no, no. Schools breed yucky little diseases and keep these doctors working! I just laughed and responded that I’m actually a teacher, then asked how she got that idea.

“Wow,” she said, “you use medical terminology very well!”

Umm, yes. I suppose that at this point, the jargon is more natural to me than the average Joe Schmoe on the street. I feel a little irked, but also a little proud, that she was impressed by my vocabulary. I don’t necessarily want any opportunities to improve it, but at least I know that if I’m ever at a cocktail party with some doctors, I can blend right in.

Who am I kidding? Me? At a cocktail party?? Not unless they are serving margaritas and Bud Light…

Language and Feelings

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Giggles

by Maggie

Okay, okay, okay. For heaven’s sake, enough with the Debbie Downer posts.

I mean, seriously.

Can I share some good?

First, this kid is potty trained:

Why she wouldn’t smile, I’m not quite sure. I just decided to join in with her. And the cat face? We went to a “Fall Festival” fundraiser for Down syndrome awareness,,, we aren’t really cat people, but Ellie likes to be different.

Anyway…. the potty training… it’s done. They do it when they are ready, ya’ll.

Also, this kid laughs:

I cannot even begin to tell you what joy filled us to hear her laugh for the first time. It caught us totally off-guard and it was AHmazing. I have replayed the moment in my head a thousand times, hoping that the sound and the feeling never leaves my memory. In the following video, you can kind of hear it. Unfortunately, pretty much the only thing that makes her giggle (for now) is an obnoxious, fake laugh from John. It’s a little tricky to hear her, but still worth the view, because her smile alone is rockin’:

Tessa is still rolling all over, pushing up on her arms and now gets to her knees pretty often, too. She can’t really pull her belly up off the floor, but she is engaging her hands a lot more. We have set a very loose goal of sitting by Columbus Day, crawling by Christmas, remembering, though, that she will do it all in her own time. She is loving food of all kinds. We have yet to find a puree that she doesn’t like (of course, we haven’t ventured into the meat variety yet… eew). She is “talking” up a storm, finally mastering a “buh” sound and sometimes a “duh.” As her core gets stronger, she will be able to laugh more and make louder sounds. She spends a lot of time folded in half, chewing on her toes, like lots of kids do. She is infamous for getting stuck underneath the furniture. We think teeth may be coming soon, as she is drooling up a storm and chewing on everything that she can get into her mouth. Still, she is an awesome, easygoing, happy little baby.

And now, cuteness:

family

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Down syndrome doesn’t suck.

by Maggie

I don’t prefer to give most people who berate and belittle people with Down syndrome any consideration. But I just need you to understand something very important today.

Down syndrome doesn’t suck.

I’ve watched a lot of really, really crappy things happen to great people recently. Pain beyond my ability to comprehend surges through the hearts of new parents kissing their babies goodbye too soon. Families devastated by poverty, war, hate. There are absolutely horrific events happening all over my community… all over the world.

And apparently, the birth of my baby girl is one of them.

Recently, Richard Dawkins, a famous geneticist and author (among other things… a**hole being one of them) told a mother expecting a baby with Down syndrome that it would be immoral to continue with her pregnancy, given that she knew about the condition. He said that people should try to “reduce suffering” when they can and that bringing a child like Tessa into the world isn’t right because she will suffer and won’t contribute to society.

But, Mr. Dawkins, what you have failed to realize, is that in her eight months of life, she has already contributed to society. Probably in a better way than you ever could.

Tessa’s smiles light up the faces of family and friends who have long been searching for something to smile about. Some of her loved ones glow in a way they never have before when they see her. The very feat of her existence, beating obstacle after obstacle, has inspired people to do more, try harder, go farther. She has changed the way teachers do their jobs, influencing the education and experiences of an incomprehensible number of children. She has helped people forge relationships that haven’t been strong before. She has been in the world for 247 days and she has made an impact.

Tell me that our world doesn’t need more positivity? More love?

I know a lot of people with 46 chromosomes who suffer or who don’t contribute to society. In fact, they sometimes make our world worse. You made it worse. You perpetuated an outdated, unjust stereotype. You devalued the worth of my child. You scared a mom who doesn’t need to be scared.

People who receive a prenatal diagnosis of Down syndrome deserve accurate information about their child’s future. If you can’t give accurate information, please don’t give any. Next time, send them to the Down Syndrome Diagnosis Network.

Rant over. Special Needs Mom Law #3: Let it go.

Done.

She is so loved.

Language and Feelings Uncategorized

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So where’s my magnet?

by Maggie

Oh Ellie Bean, you sure can keep your momma on her toes.

So, we’re working on thank you notes for all of those who donated to our cause when Team Tessa ran in the Rock n’ Roll half back in in July. We decided to order some ridiculously cute magnets with Tessa on them to send our supporters.

Ellie takes a keen interest in helping me do most anything around the house, especially things that she really can’t easily help with. Like writing thank you notes…. There’s no clear way for her to help write letters to our family and friends, but after ~~more whining than I could handle~~ a little consideration, I decided that she could put the magnets into the envelopes.

At first, she was totally enthralled with these little pictures of her baby sister. But, as her interest in envelope-stuffing quickly waned, she decided to spread all fifty out across the table. “Look at all these cute little Tessas!!” she squealed, lining them all up in neat little rows. Until….

Cue dramatic music.

“So, Momma? Where is my magnet?”

Not upset, not mad, not annoyed. Just confused. And my brain just started to race… What to say, what to say?

We have made a decision that there isn’t a need for a sit-down conversation with Ellie about her sister’s genetic makeup. She’s a smart cookie, she hears us talking. We read her 47 Strings, she hears the words “Down syndrome,” and it’s just a part of our life. She doesn’t know what the difference is, or how it will change all of our lives, but she knows. So how do you explain this cause that we’re connected to, without diminishing the value of the child without a cause?

“Well Ellie, do you remember when we all wore our Team Tessa shirts and watched Daddy run a race?”

“Oh, yeah. Well, I choose this one. This one is mine.” (picks up a Tessa magnet and hops down from the chair)

And she walked away.

Oooooooookay. So my freak-out was unwarranted… this time.

I don’t worry about Ellie getting lost in the shuffle of having a sister with extra needs. Believe me, she makes herself the star of her universe with no problem. As we continue on our journey of this kind of “parenting on steroids,” there will be lots of tough conversations. Perhaps Tessa, too, will have “what about me?” questions.

Perhaps? Who am I kidding? Of course she will! I’ve never subscribed to the “equal is fair” philosophy. I know that each kid will require her own special type of parenting, but explaining any of that to the other is… tricky. Good thing I’m going to get lots of practice.

And now, cuteness…. (which is, somewhat ironically, pretty Tessa-heavy this time.)

This is her “if you think I’m done eating my food, you’ve got another thing coming” face:

family Language and Feelings Sisters

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Reacting Appropriately

by Maggie

And here is the difference that Down syndrome makes:

Belly sleeping must be something genetic. From me to Ellie and now Tessa… we love it. As Ellie has grown, she has embraced more of a “pass out sprawled as awkwardly as possible across the entire bed” approach to sleeping. However, I still remember finding her sweet little diapered butt sticking up sky-high in the crib when she was an infant. There are pictures, gobs of pictures, washed out in the terrible flash of an iPhone camera. It was just darling.

(On a side note: how did we function before digital cameras?)

Tessa, too, loves the comfort of belly-sleeping. But finding her with her knees tucked under her butt, rather than sprawled flat on the mattress, gives me a markedly different reaction.

It’s monumental.

It’s me rejoicing – she can! She can!! She can bring her knees up under her body. She did it!! The practice is working! Miss Kate and Miss Rachel (OT and PT) will be so proud! I’m so proud!!

Every milestone is a rockin’ celebration. I don’t even get pictures of this stuff because I’m too excited to consider a camera. Yesterday, Tessa found herself in the mirror during her bath. I don’t have a clue when Ellie first stumbled upon her reflection, but yesterday, I sat and stared in awe while our little peanut shyly smiled at herself.

Monumental.

This is the challenge now, when there is a child born with obstacles… reacting appropriately to the successes of others. Everything that other kids just kind of figure out takes her so much more. And so commiserating when the momma of a typical child impatiently wonders when her child will be able to XYZ… it’s hard for me, okay? It is. It just is.

And now, cuteness:

Language and Feelings self

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The State of Our Union: July, 2014

by Maggie

Midway through 2014…

What?

Seriously, when did that happen? Our lazy days of summer have been very, very good to us. With the Fourth of July holiday now over, I can already feel the itch to get back to school. Crazy as I know it is, I do miss the routine of our school year.

But not enough to rush back in already. 🙂

Here’s an update on how we’re all doing… skip to the end if you’re only interested in our most-interesting family members (meaning: the kids. I’m not offended if you don’t care much about John and I. 🙂 )

John and I

We’re coming up on our five-year wedding anniversary (this Friday!). As we have spent every one of our anniversaries in the car and this year will be no different, on kind of a whim, we went out to celebrate last week. Hiking in a forest preserve, beers at a local brewery, Buffalo Wild Wings for dinner (because it’s within walking distance from our house), and then walking home in the pouring rain… it wasn’t exactly a romantic celebration of our love, but I think it fit our couple personality well enough. Maybe not the hiking… no part of me is a hiker. But we did it.

Why buy a card when you can just show one to your husband in CVS for free??? 🙂

John is loving every minute that he gets to play with his girls. Grad school is in a lull right now before his final push to the end and Lord knows that no one is ready for that to be over more than we are. He’s also training for the Chicago Rock n’ Roll Half Marathon (donate here), which means a lot of late-night and early-morning runs. I’m so proud of him! And, our team is in first place for the amount of money raised. I can’t wait for the race!! Team Tessa will be out in full force!

I’m settling into a new position at work this summer, which has been a (good) whirlwind. I have also made some good connections with mommas in the Down syndrome community and I, like John, have really enjoyed time with the kids. My travel bug bites are sufficiently calmed for a little bit from all of our mini-excursions, though my recently-renewed passport is just dying to be used…. someday….

Ellie

Can I tell you again how much I despise potty training?

The child is a nutcase and I adore her. She’s smart as a whip and fiercely in love with all things Frozen. We have seriously watched the movie at least 5 times a week for the last month. Now if we could just get her to take a break from her imaginary universes and start listening to her bladder, we could move all move forward. Ellie loves her sister to pieces and we haven’t had a single issue with jealousy or regressing to baby behaviors. What a blessing! 🙂

There is no filter on this picture. Those eyes are going to break hearts someday….

Tessa

We had Tessa’s six-month IFSP review yesterday (her IFSP is the document that outlines her goals for development). She is almost seven months old! Her occupational therapy evaluation was yesterday as well. On the positive side, she rolls like a champion and is actually “advanced” for her age at that skill!! However, she is struggling to use her hands to do more than swat at toys or put things in her mouth. When she was evaluated today, we learned that developmentally, her fine motor skills with her hands are around the two-month range. So, going forward, we’re going to add in occupational therapy once a week. We have to work on her core strength. It’s difficult for her to do much of anything until that tummy strength improves. It will help her move, play, eat, breathe, interact… it’s a huge focus for us right now! As our developmental therapist (DT) explained to us, she’s going to keep developing cognitively and if her body won’t do what her mind really wants to, we have to worry more about her behaviors (which, by the way, happens in classrooms all across the world all. the. time.). In true Tessa form, as soon as she heard her DT say this, she started to improve. I swear to you that as soon as this child hears that she isn’t doing what she should be and we’re going to add more therapy, she hurries up and “gets” the new skill…

This month, we also started solids with Tessa. She seems to be indifferent to it really. Can I also mention how much easier it is to do things like start solids when you just have one child? I don’t know why, but we have been really inconsistent in feeding Tessa at the table. Weird. Anyway… right now, she doesn’t eat a whole lot by spoon and she’s slow as molasses, but she doesn’t spit it out! While we can’t always tell if she is interested in more or not, she will let us know when she is done. With great joy, she spits it all in our faces by buzzing her lips. The joys of parenting… I have started using a few signs with her (“more,” “all done,” and “eat”) and I’m sure that once John reads this update, he will, too. 😉

Tessa’s emerging personality is sweet and easygoing but has a flair for the dramatic, she loves people and being held, adores her sister and daddy (and most other people)… She sleeps well, is now eating well and provides great balance for us and her goofy sister. She is such a great addition to our family!

As our summer dwindles (but not too quickly!), I can’t help but feel so blessed for all that we have right now. Our family, friends, and coworkers have been overwhelmingly positive, supportive, loving, helpful… I could go on and on. For now, I just want to say thanks. If you are reading this, you have been a part of this… of us and we can’t thank you enough.

family self Sisters

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Spotted

by Maggie

I don’t usually see Down syndrome when I look at Tessa, but I do catch a glimpse here and there of her almond eyes or flat nasal bridge. I’m always curious to know if people can see it in her. Not fearful or frustrated, just curious.

I mention this now because we were spotted this weekend by a fellow member of our Ds community and it kind of jolted me a little bit into our reality. It’s something that I have been thinking about and planning for (as if I have control over it) for a long time. I always wondered what it would be like to meet other moms in our Ds community at random. It hadn’t happened yet, up until now.

Really, I spotted the little boy first. And froze. We were visiting a children’s museum in Kentucky with some family over the weekend. As I walked into the open parlor, he had his back to me, but his stance gave him away. I maneuvered my stroller to get a better view and knew immediately that he was one of our community. Watching him play with his typical brother and another little boy with Down syndrome was refreshing. They played and explored as all children do. They caused the same mischief as Ellie does. They laughed and enjoyed the exhibits right alongside their typical peers.

I’m sure his mother saw me looking at him, so, silly as this may be, I tried to keep Tessa turned so that she could see our baby girl’s sweet face. I wanted her to know that I wasn’t one of the people who stare… that I was a momma looking for better understanding of who my child might be.

She approached me, asked how old Tessa was and I shared. I stumbled around looking for something to say back and settled on asking her boy’s age (four). He ran by us at that moment and she grabbed him and showed him the baby. He took absolutely no interest in Tessa and squirmed away and that was that.

I wish I had been more engaging, that I had better articulated how watching her son run and play made me genuinely happy. I was too overwhelmed in that instance that someone knew. I’m just grateful that she was kind enough to approach me, to tell me that Tessa is a doll, and that she wasn’t upset by my awkward glances toward her family.

Kentucky Mom, wherever you are, you totally made my day.

And now, cuteness:

Fish lips

A Princess Anna dress for the birthday girl

Silly faces with Mimi (my mom)

John loves a good Children’s Museum visit…

Hanging out on the moon with Papa (my dad)

family Language and Feelings

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Flip Flops

by Maggie

One thing that I have noticed now, as the mom of a child with special needs, is the tummy flip-flops.

You know how sometimes, people say things or do things that cause a split second, literal gut reaction? Like when you see a cup of water about to fall over and you get a little flutter? Well, that happens to me more often now than it used to. A lot more. And for the silliest stuff.

Take for example, the palm-reading infographic that I came across on my Pinterest board today. I was looking through my pins for something related to animals to use with my Spanish 2 kids and found this:

Leer la mano: A fun activity for practicing descriptions! (tiempo presente) (ser) - Activity description in blog post

You don’t have to know Spanish to tell that it’s a “cheat sheet” to reading a palm… which is something I don’t believe in anyway… but that’s beside the point. So, I’m looking at this infographic and suddenly, I remember Tessa’s straight little palmar crease (the marker that I studied and studied in the NICU) and I get a little flutter that says “Hey! Her palm is different! She probably can’t get her palm read! Can she??” And it’s not a good or bad or sad reaction, it just is.

Here are some other flip-flop moments:

-Listening to a mom tell me that her child would never get into college if she wasn’t selected for National Honor Society

-Any time I walk past a Special Ed teacher or the Vocational Ed classrooms

-Checking the “disabled” box for Tessa on our insurance forms

-Hearing kids called each other “dumb” or “stupid”

-Any mention of college savings plans.

Is this crazy?? A part of me thinks that I might be crazy, but the more rational side says that there is no way I’m alone in these sudden changes in perspective. I’m not bogged down by the feelings, they don’t upset me at all. They are just… there. Kind of like Down syndrome. It just is.

But if anyone else wants to tell me that they deal with the same thing, I’d love to hear about it. 😉

Uncategorized

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Yo soy La Lay

adventures in family, faith, and Down syndrome

Mad vocabulary skillz

Giggles

Down syndrome doesn’t suck.

So where’s my magnet?

Reacting Appropriately

The State of Our Union: July, 2014

Spotted

Flip Flops

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