Down Syndrome | Yo soy La Lay

Advocacy #5: Use people-first language

by Maggie

In the Down syndrome community, great effort is made to help the world see our children first. There are pros and cons to having a visible disability. On the positive side, people recognize that you may need help. On the negative, people assume that you need help. It’s a double-edged sword.

People-first language establishes that an individual is defined as a person before any particular diagnosis. It means calling Tessa “a child with Down syndrome” and not a “Downs child.”

I have to assert here that we are talking about the Down syndrome community. Other communities (for example, the Autistic community) have a different viewpoint.

To me though, people-first language means dropping the label altogether as often as possible. I realize that there are times when her diagnosis needs to be communicated and referred to. I’m not in the business of pretending that it isn’t there. However, in my mind, person-first language goes beyond saying “a child with Down syndrome” and just saying “a child.” An example…. humor me here, please…

Say you run into Tessa and I in a Panera. She’s her usual ham of a self, giving you high-fives and blowing kisses.

“Wow!” you might respond, “what a sweet little Downs baby!”

or maybe “Wow! What a sweet little baby with Down syndrome!”

or perhaps “Wow, what a sweet little baby!”

In the Down syndrome community, our preference would be choice three.

But, shhhh, I’ll tell you a little secret. If you mean no harm, I’m not going to correct you on any of it.

I’ll be the first to recognize that for the standard human, there are a lot of rules to follow from a variety of communities who all just want what is best for their members. My plea tonight is not just to those who are not directly tied to the Ds community, but to our own members as well. Fight the battles worth fighting. Make a point to teach a lesson when you can make a difference. Use love and example and above all else, be patient with those who are learning.

If the person is being blatantly rude just to be an ass, by all means, have at them.

But otherwise, lead by example. People first, if you would please.

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

by Maggie

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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Advocacy #3: Give us a smile

by Maggie

con·spic·u·ous

kənˈspikyo͞oəs/

adjective

1. standing out so as to be clearly visible.

2. attracting notice or attention.

synonyms: easily seen, clear, visible, noticeable, discernible, perceptible, detectable; person with Down syndrome

That’s reality right now. Not that everyone in the room notices us, but that everyone in the room who does notice us can see that we are different.

We have run the gamut of responses to Down syndrome (remember this guy??). Not all responses are negative. Most, in fact, are quite benign, even a little sweet. And they bring me to another little way that you can advocate for people with Down syndrome: smile.

Smile at everyone you meet on the street. Good or bad, rich or poor, sick, healthy, clean, dirty, happy or sad. A smile says “Hey, I see you, human being.” I’m not saying you should fawn over every individual that crosses your path, nor should you go out of your way to grin awkwardly at someone who is different. I’m saying that it is pretty cool if you let your eyes meet someone else’s (anyone else’s) and allow yourself to smile. And though you may think it far-fetched, it’s advocacy at its finest.

You see, when you share a smile with the differently-abled, the marginalized, those on the outskirts, it’s not really about them, it’s about the others in the room. It’s about showing the world that it’s cool to be cool with everyone. When you treat everyone who looks a little different with the same dignity and respect as you would that nice-looking, decently dressed human being walking toward you in the grocery store, it sends a message.

We are all humans. Advocate for the humans by smiling kindly at the humans. You can’t go wrong with that.

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Advocacy #2: Donate

by Maggie

Can we just get this one out of the way? It’s uncomfortable for me, it’s probably uncomfortable for you, but it’s advocacy with minimal effort and on a Friday night after Homecoming Week, it’s what you get.

Here is a cute picture to distract you from the awkwardness of this post:

In all seriousness, I would urge you to carefully consider which charities you choose when sending in donations. Some groups spend a lot of money on staff and publications and little on the cause itself. Others promote ideas that do much more harm than good (Autism Speaks, I’m calling you out). We have our own favorite Down syndrome charities and groups (listed below) that support our own viewpoint and mission for Tessa. There are others, but these are the ones that we feel best support inclusion and advocacy for individuals with Down syndrome:

National Groups:

National Down Syndrome Society – http://www.ndss.org/About-NDSS/Mission-Vision/

National Down Syndrome Congress – http://www.ndsccenter.org/mission-and-history

The Down Syndrome Diagnosis Network – http://www.dsdiagnosisnetwork.org/

Local to Illinois/Chicagoland:

National Association for Down Syndrome: http://www.nads.org/about-us/

UPS for DownS: http://www.upsfordowns.org

One more for those who are into medical research and treatment (I’m still undecided):

The LuMind Foundation – http://www.lumindfoundation.org/

Happy Donating! 🙂

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Advocacy #1: Be “In the Know”

by Maggie

Let’s be realistic here: the vast majority of people we meet in the street know little to nothing about Down syndrome. I knew as much as my ninth grade Biology teacher had taught me (I was a good student, but still, not much stuck). Extra chromosome, learning difficulties, yada yada.

I knew nothing.

While I know lots now, I still know nothing.

When I talk with other people, I have learned to assume they know nothing realistic about Down syndrome and take the approach that it is simply my job to teach them. After all, two years ago, I knew nothing. Why would they? In addition to that, people who were born with Down syndrome even 10 years ago have a dramatically different life experience than those being born today. It is important to educate ourselves if we, in turn, want to educate others. Believe me, there is nothing that I love more than setting the record straight when it comes to information about Down syndrome.

Some facts for you… so that you can be “in the know” when someone starts talking about Down syndrome:

Down syndrome (Trisomy 21) occurs when a third copy of the 21st chromosome is present in an individual.

There are three types of Trisomy 21 – translocation and mosacism are much more rare. Tessa has the standard type. Usually, the extra chromosome is from the mother, but in about 8% of cases, it comes from Dad.

No, we don’t know which parent gave Tessa her special gift.

Trisomy 21 is a random and common abnormality. It’s not a disease, it’s not contagious, it’s not preventable, it’s not predictable. It happens equally across all races, religions, and economic backgrounds. Yes, the odds increase as a woman ages, but most babies with Down syndrome are born to younger moms simply because younger moms have more babies in general.

You will often hear about the IQ of people with Down syndrome being low to very low. However, we know now that IQ tests do not accurately measure the intelligence of people with Down syndrome because of their difficulties with communication. We know that with interventions and schooling and inclusion, people with Down syndrome most often live independent lives. They can learn to drive cars, get married and some have children. They can work, they can go to college. They can do most anything – they just need some extra time and maybe some extra help.

Typical issues that people with Down syndrome might deal with include heart defects, intestinal issues and Celiac disease, hypothyroisim, obstructive sleep apnea, leukemia, and in the long term, Alzheimer’s disease. Not everyone will have these issues.

It is important to know that while these occur more often in Down syndrome than in the typical population, response to treatment is much more successful if a person has Ds.

Most importantly, studies continue to show that people who have Down syndrome tend to express very high levels of satisfaction with their lives. In one study, 99% of the over 3,000 individuals studied reported being happy with their lives and 97% like who they are. Their families are generally content; families also experience lower divorce rates than those without children with Down syndrome.

Please stop for a moment and think about all of the people that you know. Are 99% of them happy with their lives?

Food for thought.

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Get ready… get set…

by Maggie

Last Wednesday at 8:30 pm, well past my bedtime, I found myself sitting at the kitchen table, hastily drawing on posters and t-shirts for a rally to preserve Early Intervention funding in Illinois.

“Mag,” John quipped from across the room, “you were born to be an advocate. You just needed a cause.”

This is true. FullSizeRender

Before I had Tessa, if asked what my hobbies were, I had no answer. I’m not boring (I don’t think), just never had something that totally captured my interest. Now, I have Down syndrome and special needs advocacy. It’s an odd thing to qualify as a hobby, I suppose. It’s not something that I do for fun necessarily. In a way though, it’s something that I do because it feels productive and important and that is fun in my mind.

I recognize, of course, that this brand of advocacy is not for everyone. Heaven knows that I’ve had enough conversations with enough people to know that some find us to be “takers, not makers” and unworthy of such silly requests as funding for basic therapies and a place in the classroom.

Ugh. We’ll be addressing this later.

In any case, all of this is important because tomorrow, October 1st, marks the beginning of Down Syndrome Awareness Month and the 31 for 21 Challenge. Last year, we wrote about 31 things that we have learned since we had Tessa. This year, we’re sharing 31 mostly simple ways that you can advocate for people with Down syndrome (or people with special needs in general). I would never presume to tell you that just because this is my cause that it has to be yours, too. But, if you should want to make a small difference in the lives of people like Tessa, in honor of this month or just because you want to, we are excited to share some ways to make a difference.

Thanks for joining us.

To hear our radio interview at the Early Intervention rally last week… click here: http://wuis.org/post/funding-worries-persist-parents-disabled-children

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Helpless, hopeless

by Maggie

To sit and watch babies lose their Early Intervention therapies left and right is gutwrenchingly painful.

Do you hear me???!!?!

I cannot understand what our state has come to. I cannot understand a world in which we cast aside those who need us the most, to be nothing but a political pawn in a game of war that we can only lose.

This is not a liberal or conservative issue. It is about human rights.

I am well aware that a somewhat vocal minority believe that it has been my choice to have a child with special needs. You could have aborted her, they say. (Yes, they literally say that) And then there would be no expense for therapy. There would be no expense, no argument for Early Intervention. She’s just an expense. Not a human being. There are people who cast us aside and feel that we are owed nothing because we can contribute nothing.

We are owed nothing. I understand this. But we contribute.

What world do we live in that civilized human beings will shun needy children? What world do we live in that politicians continue to push down on the disabled and the hurt and the suffering and play with the very real power that they have to devastate an entire population? What is going on with a world where not getting a lottery payout is national news, but thousands of children being abandoned is not even covered somewhere on page 12??

Family and friends shake their heads from afar… Oh, that’s a pity they say. I’m so sorry to hear this, those (fill in derogatory term) politicians… They get mad, and move on in their day…. We cannot. We live waiting for the letter that terminates services. We watch our dear friends lose their lifelines. And it hurts us to know that we are alone in this battle.

Do something.

I implore you.

Don’t tell me that this is just temporary or that it’s just a publicity stunt.

Make a phone call.

Don’t tell me that money has to be cut somewhere, so just deal with it.

WE ARE TALKING ABOUT BABIES HERE.

Babies. We are talking about babies.

Make a call.

#INEEDEI

Tessa

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In appreciation of just showing up

by Maggie

In my own process of navigating our Down syndrome diagnosis, I have kind of, for better or worse, made it all about me.

From the moment I learned that there were people who cried when they learned the news about Tessa, I essentially said to hell with their feelings, they don’t get to feel that way, she’s my kid. I’m content and they had better damn well be content too.

And away we went.

I could go on for a long time about whether this was the right choice or not. The reality is that we all get to have feelings. And, perhaps more importantly, our feelings are our reality. Accepting, living with, even enjoying a world with Down syndrome is challenging for some people. It may still be a challenge for some of my closest family and friends.

This is a note of appreciation, from me to all of you. Thank you. Regardless of your feelings or your place in the acceptance process, you show up. Every time.

I remember that for a couple of months, it was very jolting for me to interact with older teens and adults with Down syndrome. I’m sure there are a lot of reasons for this… but mostly, I was afraid of acting the wrong way, of trying to be normal, but maybe coming across as not normal… Afraid of saying the wrong thing or looking the wrong way or God knows what else.

I am sure that this is a challenge that my family sometimes faces. But it doesn’t stop them from showing up.

I had this moment of clarity and deep gratitude last Saturday morning… One Friday per month, our local group puts on a Family Friday event where kids and their siblings get to run free in a daycare facility while the parents chat. It’s the highlight of our month. 😀 This month, John’s sister and her family were in town and we asked them to join us for Family Friday. Without hesitation, brand new baby in tow, they were in.

There are a million great excuses that they could have used to duck out. Instead, they ventured into our community and got a little more cozy with Down syndrome.

I cannot tell you how much it means to us when friends and family just jump on board.

There are so many other examples of this. Team Tessa and our amazing friends who raise money for our group. The friends and family who come and hang out in our UPS for DownS tent on race day. The willingness to be a part of things that help us connect to a community… The acceptance of Tessa as just plain Tessa, with or without an extra chromosome.

There is no greater gift that can be given to our family than to just show up. Thank you all for doing that, time and time again.

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A No Laughing Matter

by Maggie

Have you missed us??

We are back – and tonight, bringing an important public service announcement.

Let’s start with this: I laugh loudly, and a lot. It’s genetic, really.

It’s unfortunate that with her extra chromosomal material, Tessa didn’t pick up that loud laugh… It would be built-in therapy.

We’ve brought this up before, how Tessa bursts into tears at the sound of adult laughter. It’s been on my mind recently because we have a family trip to Kentucky coming up and like I said, the laughing loud thing? It’s genetic.

It’s kind of a troubling issue you see, because we are all laughers and boy, does a crying child dampen the mood.

Now that I have tripled my commute time each day, I have lots of time to think. Nothing particularly earth shattering has come out of this deep thought, believe me. Mostly I just wrestle with whether I should stop to quench my undying sweet tooth after a long day at work (hellooooo Oreo Coolata). But I digress. I’ve actually been thinking some about the laughing. I’m not Tessa’s therapist, but I know my girl, and I want to share some ways that you, dear family and friends, can help us help Tessa.

1. Tessa is learning to live in a world where there are adults who laugh and screaming toddlers and the whole gamut of unsettling noises. Do not censor yourself. We need her to learn to deal with her emotions. She will, in time. The last thing anyone wants is to see all the fun go down the toilet!

Remember this?

2. It really helps if, after you laugh, you avoid eye contact. You may think I’m crazy, but how many time have you seen a kid fall down and not actually cry until an adult gives that ‘look’?

3. Never, ever (EVER) feel bad about her crying when you laugh. It’s not you, it’s her. And that’s ok. It’s ok for her to have this issue and it’s ok for you to laugh. And to be honest, when you feel bad, we feel bad and uncomfortable and it just makes everything feel a lot worse than it needs to. So even if you do feel bad, just pretend that you don’t.

4. Did I mention the “no eye contact” thing? It seems to help with #3.

5. Know that as her parents, John and I have got this. Sometimes people like to help by making suggestions, or trying to problem solve, or commiserating, but it can be exhausting. Between her therapists and our support groups, we’ve got the tools that we need to help her process. We need time, and we need people to know that if she needs a break, trust us, we’re on it.

So, to recap, your job is to laugh. Please, please, laugh. We’ve got this.

Maybe these will bring some chuckles?

Language and Feelings

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Dad Sabotage

by Maggie

It is an annual tradition of mine to kidnap John around Father’s Day and take him (and the girls) out to the Quad Cities, where we met and attended college. He never really knows when it is coming and this year, we got him good.

We have quite a few trips coming up in September and October and, given that is it now practically August and we hadn’t gone yet, he thought it was going to be an off year. This is why, when I told him that it was time to go shampoo the carpets at our townhouse and asked him to please let me drive so that he could call his mom, he didn’t bat an eye. Then, I asked him to open the glove box for some gum and he found this:

He knew. Inside the card, a terrible little poem that I wrote on a whim, telling him that we were off on a little journey:

It’s horribly written, I know. You can only write so well in the grocery store parking lot with a four-year-old asking 47 questions a minute in the back seat.

In any case, he was over the moon excited. And thus, our 36-hour whirlwind trip began.

I love this.

We ate dinner in one of our favorite QCA restaurants and went swimming in the hotel pool. Tessa loved it, Ellie was totally freaked out by the depth of the water.

After swimming, Whitey’s Ice Cream, another must-have when we visit what feels like our second home…

Where the heck is my ice cream, Dad??

After ice cream, it was time to get the children in bed, so back to the hotel we went. It’s always a curious thing, finding a way to stay awake and chat as adults while sharing a hotel room with the children. This year, John tried putting on episodes of Everybody Loves Raymond, but after a couple of references to testicles and a vampire commercial, we thought maybe we should try the quiet reading time method. After about five minutes, we got a lecture from Ellie.

“Guys, no lights, no TV. It’s time for bed. Come on, let’s go, lights out.”

Alright then.

In the morning, we visited Jimmy’s Pancake House for the most delicious pancakes that we have ever eaten. We come here every time we visit the QCA and are never disappointed. This was the first time that we had brought the girls with us. Tessa was hammin’ it up with everyone around her. The waitresses all came over to say hello and at the end of the meal, our waitress asked if she could take her to meet some of the other staff. It’s a small place and we have had this waitress a few times, so since Tessa was ok with it, we let her go. She was high-fivin’ everyone she met! Hilarious. I asked Ellie (who was just a little bummed that she didn’t get paraded around) if she thought Tessa was being a ham and she said “No, she’s not a ham. She’s a lover. She just loves everyone!!”

Also, I’m not sure if you knew this or not, but if your kids are starving, jelly packets make a great appetizer. Just FYI.

No visit to the Quad Cities is complete without a visit to the Family Museum… as long as the kids are with us, that is. 🙂 It’s one of the best children’s museums that we have visited, mostly because it’s small enough to let the kids do their thing and they can actually interact with all of the exhibits without being overrun by 50,000 people.

They have added a really neat area that is designed for crawlers and new walkers. Tessa loved it and got a lot of PT practice that I’m sure her therapists would appreciate. Personally, I appreciated the time to just sit and watch her safely crawl around and explore.

The real reason that we love the Quad Cities is our emotional tie to Augustana. It’s a small school – and graduates of Augie are sickeningly devoted to our alma mater. We can’t help it, it’s just a lovely place to be.