Down Syndrome | Yo soy La Lay

Miss Cranky Pants

by Maggie

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…

Language and Feelings Tessa

7 Comments »

Happy birthday, Dad!

by Maggie

In honor of my dad’s 55th birthday, I present 55 things I’ve learned from the guy who (along with my mom) raised me. He never reads this blog… but maybe this time, he will.

1. Learn everything you can.
2. Provide for your family. Work hard.
3. Get dressed every day.
4. And for heaven’s sake, wear shoes. (We grew up in an old home that was almost always under construction, so walking around without shoes was a safety hazard)
5. Serve others.
6. Go to church.
7. Take calculated risks. When I was a little baby, we moved to Paraguay, South America for a little while. Random, I know. But sometimes, you have to do these kinds of things.
8. Eat healthy – food is fuel. (Especially oatmeal) My dad eats oatmeal every day. With raisins. And he’ll offer you a bowl, too, if you come for a visit. Only Ellie ever takes him up on it anymore.
9. When you go to a museum, read everything.
10. Exercise. Like, every day.
11. Travel, but don’t be extravagant about it.
12. Read the newspaper.
13. Get all the juice out of the grapefruit.

14. Use tape when painting.
15. Always find the best way to do things.
16. Change your own oil.
17. Cherish family and friends.

18. Give out the good candy on Halloween.
19. Take care of the ill and elderly. Take them out to lunch. Visit them when they are sick. Listen to their stories.
20. Charleston chews taste best frozen.
21. Always have enough beer on hand for a small party.
22. Never mind the GPS, use an atlas. Every car should have one.
23. When mom is gone, you can survive on tuna fish, hot dogs, and baked beans.
24. Falling asleep in front of the TV is in our genes.
25. Rinse out your recyclables before you put them in the bin.
26. Sometimes, it’s easiest to clean a baby’s poopy butt with a hose.
27. Braiding hair can be a three-man job My sister and I had excessively long hair as children and when my mom was gone, we would help Dad braid it. Each of us took a chunk of the hair and away we went!
28. Self-propelled lawnmowers are for the weak.
29. Always be a good host (and throw one hell of a party while you’re at it).

30. Don’t speed. (Especially when driving a golf cart)
31. Invest in your community. You’re never too young to join the historical society!
32. Make lists, on post-it notes if possible.
33. Go to the doctor on a regular basis. Get your cholesterol checked, have a physical, listen to your doctor, take your vitamins.
34. Give. Give time, give money, give support.
35. Do your best in school.
36. Save your money.
37. You’re never too old to enjoy a children’s museum.

38. Save your salad dressing containers. They make excellent containers for nuts and bolts, as well as other random household objects.
39. Wear gloves. And a hat. And boots.
40. When it snows, shovel often…
41. But also stop to build a snowman.
42. Always seize the opportunity to see your favorite bands when they come to town (especially as they get old).
43. Speak little, but say lots.
44. Watch PBS.
45. Get down on the floor and play with the grandbabies!

46. Save your receipts. ALL of them.
47. Log your gas mileage. (Full disclosure: I’ve learned this, but I don’t do this. However, I have at least one sibling who carries on the tradition.)
48. Eating the same meal for lunch every day is efficient.
49. Why buy an expensive picnic table when you can make one in your garage for less money?? And that goes for a lot of things. Be handy, make your own stuff when possible. Be a fixer.
50. If they knock down your mailbox, just build another one. A metaphor for life, perhaps?
51. Mustaches. Not a good look.

52. Write thank-you notes.
53. Insist that others do the right thing.
54. When the work is done and the time is right, take a break and let loose.

55. Practice makes perfect.

family

2 Comments »

November, in a nutshell

by Maggie

I cannot believe that we are almost to the end of John’s Master’s Degree program. He and I embarked on our journey of earning our degrees when Ellie was 6 months old. I finished 4 days before Tessa was born. In less than a week, John will join the club. He tells me that, at 67 pages, he is done writing and that all he has left are some citations (which, at this point, I’d really like to just do for him so that it can just be done, but of course, I won’t, because playing with Tessa and Ellie is more fun than researching APA Style). Craziness (and crankiness) hit their highest point last week and we’re coasting into the finish line now… Here are some pictures of life lately…

Did I post this yet? I can’t remember, but it’s worth repeating anyway..

Trying to stay warm in our most recent snap of cold weather: Tessa loves to play “sooooo big!” We celebrated my nephew’s second birthday… this is my sister, sister-in-law, and I with our kiddos… Sticking out our tongues in solidarity with Tessa 🙂 So serious today… A little happier in this one. 🙂 The media center at my school is having a “Shelfie” contest… Here’s our entry… We put up our Christmas decorations a little early (sorry, Mom) and Ellie decided that Baby Jesus needed a check-up from our dear friend Doc McStuffins. Holding her own bottle is super hard work!! Sister love. ❤

family

2 Comments »

11 months

by Maggie

We have somehow arrived at month 11 and I’m feeling more than a little thankful to be past all of the “monthly updates.”

I’ll be honest with you – along with those ridiculous stick-figure families on the back window of 80% of family vehicles, I loathe monthly baby Facebook updates. You know what I’m talking about? Little number tacked onto a onesie, baby sitting next to some board that lists all the stats… Loves peaches!! Great eater!! Hates going to sleep!! Started doing quantum physics!!

Ugh.

(If you do these with your child, please know that I love you both very dearly and this is no reason for you to stop. Please don’t be offended if I don’t read them though. It’s not you, it’s me.)

Really, I don’t think I’ve given you a monthly update in quite some time. I forget, most days, how old Tessa is. The number floats around in the back of my brain and if asked, I can retrieve it. With strangers, sometimes I lie and tell them that she is younger… usually, that’s just easier than having to explain that yes, I know she’s a tiny little peanut and no, she’s not walking yet. But even if the rest of the world is obsessed with how she measures up to her peers, my thoughts about her have so little to do with what she should be doing and so much to do with how far she has come. I don’t really think much about ‘man, you should be standing!’ There are mostly thoughts about how therapy is helping and how much I want to do what is the very best for this girl.

Eleven wild months. Amazing.

Tessa

4 Comments »

On letting go

by Maggie

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…

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.

Language and Feelings

2 Comments »

(untitled vent.)

by Maggie

I do a lot of language correcting when hanging out with teenagers all day. Normally, I don’t hear the word “retarded” on a regular basis. In fact, I could really count the number of times, Before and After, that I had to correct it on one hand. In a high school setting, that was promising. It seemed like maybe, the word was disappearing.

Until today.

3 different kids in four hours. Each kid got a lesson. One poor child even got pulled into my office and shown 47 pictures of Tessa all over my walls.

Every single time, it drains all of my energy.

I wonder if that ever stops?

What the heck, man??

Language and Feelings

6 Comments »

Lesson #31: There is beauty in this change

by Maggie

This is the last post of the 31 for 21 Blog Challenge!

This is my most important lesson.

Upon returning from my summer Study Abroad program in Ecuador during college, I did something completely uncharacteristic of me: I got a tattoo.

Evidence. And, a new ab binder.

If you were to line up my brother, sister, and I, I’m fairly confident that no one would peg me as “the tattooed one.” I still wonder, on occasion, if the tattoo that my brother got was simply an effort to not be outdone by his nerdy sister. He would never admit it, of course, but still…

(On an unrelated side note, I think that my dad was more than shocked by this. In the weeks following The Tattoo, he wrote the word “Hola” in permanent marker on his foot in silent(ish) protest and then showed it to me every time I saw him.)

In any case, the words permanently stenciled on my left foot are a quote from the Cuban revolutionary Che Guevara. Controversial, I know. In Spanish, it says, “Let the world change you, and you can change the world.”

Never has this been more relevant to me than it is now.

When I think back to my old high school yearbooks, I remember a lot of the signatures urging “stay sweet!” or “don’t change.” Um. Thank God I am not the person that I was when I was 17. Seriously. With time comes perspective and if I could re-sign all of those yearbooks now, from the eyes of my almost-thirty-year-old-self, my message would be quite different….

Change.

Change every day.

Don’t harden your heart when you experience struggles. Grow. Learn. Experience.

Change.

Listen to the stories of others. Open your heart to what they are telling you. Seek to understand, to support, to love. Be compassionate, caring, empathetic, kind. Take what they have to show you and make a difference.

That is all we can do to leave this world a better place than how we found it.

When I think about little Miss Tessa and her place in this world, my prayer is that others will seek to understand when they interact with her. She doesn’t have to perform any great miracles or bust through any stereotypes. But maybe, just maybe, she will teach someone how to love. Maybe someone will connect with her in a way that will open their heart to more patience or acceptance. Maybe her smile will make a difference on a bitter day. Maybe including her in a classroom of typical children will be a greater lesson for her peers than can be found in any textbook. Maybe cheering on her successes will create advocates in unexpected places.

When we allow the experiences of others become a part of our hearts, we can change the world.

Will you let her change you?

family Language and Feelings Tessa

2 Comments »

Lesson #30: Things I’ll never say again

by Maggie

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.

Uncategorized

4 Comments »

Lesson #29: No passing up snuggles

by Maggie

This is part of the 31 for 21 Blog Challenge!

How did we arrive at Day 29 of this challenge already?! Unbelievable. This has probably been one of our busiest months yet. And here we are at Day 29. You are going to have to forgive my short post tonight. I have no excuse except for this:

These days, when we’re running like crazy and the girls are stretching their independent streaks, I cannot pass up snuggles.

At 6:15, Ellie snuck up into my lap with FOUR books. How can you resist a little lady peeking up through mile-long eyelashes, begging you to read “just one more, please?”

After Ellie went down, the other munchkin was ready for her chance at some lap time. Once I wrestled her meds into her (eye drops in this squirmy worm… Yeah right. Anyone who says people with Down syndrome don’t get angry should watch this fabulous spectacle), she settled in for a snooze.

I do not make a habit of holding my children while they fall asleep. It’s not how we roll. But, on rare occasion, it is kind of lovely.

Uncategorized

Lesson #28: I wish it wasn’t on the news (sort of).

by Maggie

This is part of the 31 for 21 Blog Challenge! We’re almost to the end……

Frequently, news articles pop up on my Newsfeed on Facebook with headlines like Couple with Down Syndrome Chosen as Prom King and Queen or Man with Down Syndrome Opens Restaurant. I love these celebrations of people’s accomplishments. They are “feel good” stories. They are inspirational, barrier breaking, door-opening.

They also make me sad.

Articles like the above represent a weird paradox for me. I am uplifted by them because they are a reminder that there are no limits to what Tessa can do. I’m annoyed by them because if society would just stop seeing her as less than, they wouldn’t have to be news stories in the first place.

Celebration and a heavy sigh in the same breath.

I want Tessa to be accepted by her peers and I don’t want someone on the Nightly News to think that acceptance merits a news story.

I want Tessa to do whatever she is capable of and I don’t want anyone to be surprised when she does.

I realize that we are not there yet and so the new stories are necessary. I’m thankful that the message being spread is that people with Down syndrome can (whatever). I know that when we first got the diagnosis, there was a tremendous amount of comfort for my husband in watching a YouTube video of a boy with Down syndrome receiving a college acceptance letter. He probably watched it 400 times during the first week After. I just hope that someday, this becomes so commonplace that we can celebrate in the same way we would for our typical daughter – with a dinner out at Chili’s and an extra scoop of ice cream for dessert.

Someday.