Friday, October 24, 2014

31 for 21: October 23 - Don't Test Me!

I had read about this before Sofia was born, but we are seeing it in action right now.

Children with Down syndrome are tested. Often. Continuously. By lots of people. By their parents. By teachers. By therapists. By just about everyone.

"Show us how you do this." "Let's hear you read that." "How high can you count?"

It's endless.

So, quite naturally, they become very adept at knowing when they are being tested. And they also become adept at blowing the test up in your face.

We see this a lot with Sofia and her conversations with certain people, especially with David. She knows that he will "quiz" her, by asking her lots of questions. So she shuts down. Either she won't answer him, or she'll tell him he's "Bothering Me".

We are seeing it now in her schoolwork. This week, whenever we sat down to do homework, either she would not cooperate to DO anything, or she would do it all purposefully incorrectly. One sheet this week was to pick the correct word to complete a sentence, given two words to choose from. For the ENTIRE page, she picked the wrong word. And she knew what she was doing. Tonight, she decided not to do her math correctly. Her counting was all over the place, or she would make up numbers. And I've seen her do the same pages so beautifully, so I know it was all attitude. She also "completed" a word search by circling every letter in some random combination - and pretended to sound out all the "words" she found.

It's all attitude. She CAN do this stuff. She just CHOOSES not to. Her teacher sees the same thing in school. When she's "on", she's terrific. When she's in a mood, forget it.

(She'll outgrow it,,, eventually. This past summer, there was a gentleman in his 20s with DS in the rental house next to us on the Cape. When his mom pointed out that Sofia had DS, he said, "yeah, I used to have that, too." I think it definitely was because now, as an adult, he is no longer TESTED all the time!)

31 for 21: Soul Sisters (October 22)

This one is about the people - mostly moms, but a few dads and grandparents, too - I am privileged to call Soul Sisters. I would never have met these people without Sofia.

Some of them I have never met in person ("IRL" = "In Real Life"), yet I am often more connected to them than to my neighbors. Some I have had the great joy to meet, once, twice or even more.

In Real Life, or just via the Internet, we have shared so much.

We each of us love someone with Down syndrome.

We each of us know what it's like to parent (or grandparent) a child with that extra chromosome.

We have compared milestones, bragged, complained about medical and support services, compared notes on IEPs and birthday parties.

Sometimes we have visited or played together - at home or while traveling. The two National Conventions I attended were mostly about CONNECTING to those other families.

Some of my Soul Sisters live nearby - Kathleen Horigan Dye, Kerri Daniels Tabasky, Debbie Ellenbogen. Some are spread across the country - Amy Parks Patterson, Michelle Beausoleil Helferich, Amy Strottman Flege, Rebecca Pho, Tara Marie Swanson Hintz, Melissa Middendorf Hart, Renee Toth, Renee Garcia. Some are in other countries - Adina Rabinowitz (and we have been so blessed to visit several times!). There are more - so many more.

Some of us started out our journey together on the T21Online chat board. Some of us were connected in person by other friends or friends-of-friends (thanks, Dori Cousley!).

Together, we parent and love these children. We give advice, offer a virtual shoulder to cry on, raise a distant wine glass in a toast to each other.

We hold our breath and pray during medical crisis.

Sometimes we have had to grieve together. Even when we grieve, it's special. I still cherish the photos of my kids - all three of them - wearing pigtails, in memory of a sweet baby who passed away after only 6 months of joy.

This is one of the secret perks of having a child with Down syndrome. This amazing Community. My Soul Sisters.

I may not have met all of you in person. I certainly don't get to see any of you often enough. Thank G-d for Facebook! I cannot imagine parenting this daughter of mine without your support, your guidance, your friendship.

Thursday, October 23, 2014

Oct. 20 - Princess?

First, an article, originally found here: http://www.huffingtonpost.com/suzie-skougard/a-disney-princess-with-down-syndrome_b_6006964.html

A Disney Princess with Down Syndrome. Could It Work?

  Posted: Updated:

Growing up, I loved Disney movies. For most of my early life, I wanted to be a mermaid when I grew up. But not just any mermaid; I wanted to be Ariel. I'd belt my rendition of "Part of Your World" to any and every audience I could find. It led to my parents putting me in vocal lessons and carried with me, my entire life, effectively shaping my career as a vocalist and a vocal music instructor.

I now have three daughters, two of whom are heavily into the Princess Phase. My oldest's favorite is Belle because she has brown hair like her and she likes to read books. My middle daughter is a fan of Anna from Frozen. She's a little sister too and a true wild spirit. My youngest daughter, while still too little to have any concept of Disney princesses for now, won't have a Princess that looks like her and someday, she'll be aware of that. My youngest has Down syndrome.

There is a petition sweeping the Internet asking Disney to incorporate a protagonist with Down syndrome, but there is a backlash brewing even within the special needs community asking, is it necessary?

Keston Ott-Dahl, the author of the petition, thinks it is, and I agree. According to the U.S. Census, nearly one in five people have a disability, so one would think this would be a great train for Disney to hop on, yet people with disabilities are the most under-represented minority population in television and film. Ott-Dahl targeted Disney because "Disney's focus is children and this a great place to eliminate discrimination against the disabled before it even begins. Children will grow up with a familiarity, understanding and compassion for the disabled thus discrimination can be a non-issue for future generations to come." It's a message anyone can get behind, so you'd think their marketing executives would be all over it. But they haven't. Is it just too hard? 

The Down syndrome community pushes the slogan, "more alike than different," but Disney would have to draw on the differences to make it apparent that any Princess had Down syndrome. We'd expect to see the typical flat facial features, almond-shaped eyes and a short stature associated with it. That in itself is a fine line to walk because every individual with Down syndrome is affected differently. Some may have a significant showing of traits while others with very little. While viewers would take issue if the first disabled princess showed nothing of her disability, I'd also venture to say that most would be upset if our children seemed trivialized or stereotyped in any way. Showing a princess in a wheelchair would be the safe route to showcase a disability, sort of like American Girl did with their dolls, but then it leaves children with Down syndrome underrepresented yet again and still without someone on screen to look up to. 

Furthermore, while the Down syndrome community has many unifying characteristics, there are also a lot of differences because Down syndrome can affect anyone regardless of race, gender or socioeconomic status. If they chose a blonde-haired, fair-skinned, blue-eyed girl with Down syndrome, would the dark-haired, dark-skinned, brown eyed little girls with Down syndrome still relate as well? 

And then there are those within the Down syndrome community who are arguing that there are bigger problems to address, and that effort is a waste of time. Regardless, the petition still raises the issue that we need more heroes right now that are identifiable for children with Down syndrome. They just aren't out there.


Now my own 31 for 21 Post in response:

Ok, this will be my 31 for 21 post today. Sofia is DEEPLY into the Princess Phase. She IS Elsa. She IS Rapunzel. She IS Tiana. She IS Ariel (yuch - foolish whiny teenager!). Would she care if there was a princess with Down syndrome?

Right now, she has no problem relating to any of these characters. Dark skin or light, long hair or short, legs or fins. It makes no difference to Sofia.

Would having a princess with Down syndrome force Sofia to ONLY relate to that princess? Would it limit her imagination?

Out in the real world, Sofia generally does not notice anything special about other people with Down syndrome. She does not "relate" to them any more than to anyone else.

18-20 DS Awareness Month

October 18

 Sofia found a friend to keep her amused during Sabrina's Bat Mitzvah.

October 19

Too tired for a lengthy 31 for 21 post today. Sofia had a lot of fun at the Bat Mitzvah this weekend - as yesterday's photo shows, she spent much of the service sitting in another room tossing her bean-bag lizard around with friends. When you have someone with Special Needs in your family, sometimes you have to get creative with how you manage your activities.
She had fun at the evening party, but then she got SO tired. We managed to find a handy 12 year old babysitter, so David was able to come back to the party after taking her home.

 October 20: Sofia's Birth Story

As I mentioned in a previous post, once we knew that Sofia would be "Chromosomally Enhanced" we shifted our prenatal care into Boston. Besides the three fetal echocardiograms, we had lots of checkups and ultrasounds. There are a lot of things that can go wrong with a pregnancy if the fetus has Trisomy 21 (Down syndrome). So we were very delighted to be able to have excellent care.

I spent the last few months of the pregnancy getting ready, and that included making sure everyone else had all their checkups done. I let the boys' Ear, Nose & Throat specialist know that Sofia was coming (and asked if we would get discount on the third set of ear tubes - turns out Sofia was my only child who did NOT need them!).

In early February, the doctor led me to believe that he would induce me early. But then David and I went for an appointment on February 17, and the doc assured us he would let the baby stay in as long as possible. This was only week 36.

So David and I drove home from Boston, and went directly to Toyota to order the minivan - one of the final items on our list. After that and a quick bite to eat, David dropped me off at shul for my Me'ah Graduate Institute Class, and then he went home to see the boys.

And then my water broke!

So David got the babysitter to come back, picked me up at shul and we high-tailed it back to Boston. Sofia was born at 4:44 am, after only a few pushes (my babies come out quick!).

And then I laughingly "yelled" at the doctor for telling me I still had a few weeks to go.

Friday, October 17, 2014

31 for 21: October 16 & 17

October 16: Dancing Fool!

Tonight was Simchat Torah, when we celebrate by dancing with the Torah. This is truly Sofia's favorite holiday. She loves to dance. She loves to move her body. She loves the noise and the people and the excitement.

At one point this evening, all 9 nine Torahs were being held in a circle, as everyone danced around. And in the very center of the circle was Miss Sofia.

She loves to dance. I don't know if it's because of the extra chromosome, or if she just does not feel embarrassed to be fully and truly free in her dancing. But she is a wonder to watch.


October 17: Self-Talk

Do you talk to yourself? Out loud? I do. Most of the people I know do, too (even if they don't want to admit it!).

People with Down syndrome talk to themselves, too. "Self-talk plays an essential role in the cognitive development of children. Self-talk helps children coordinate their actions and thoughts and seems to be an important tool for learning new skills and higher level thinking."

(From “Self-Talk” in Adults with Down Syndrome, By Dennis McGuire, Ph.D., Brian A. Chicoine, M.D., and Elaine Greenbaum, Ph.D, 2005.)

Sofia talks to herself. Often. And often I talk back to her, because I don't recognize that she's just talking to herself. So I engage in and encourage the conversation, pushing her to expand from self-talk to interactive communication.

Much of the time, Sofia talks about her movies. She's really into "Frozen" just now, and likes to talk about snow and "Let It Go" (she has plans to sing that on "stage" at shul some time soon...). But she's also into "Tangled" (about Rapunzel) and the Madagascar movies and the Cars movies and the Despicable Me movies and Aladdin and The Frog Princess and Mamma Mia. And food

Often, people with Down syndrome will engage in self-talk throughout their adult lives - JUST LIKE EVERYONE ELSE. However, since they may not be able to identify it as "just talking to myself", often it is mistaken for a psychological problem.

"Since it is extremely difficult to evaluate the thought processes of adults with cognitive impairments and limited verbal skills, we urge a very cautious approach in interpreting and treating what seems to be a common and at times very helpful coping behavior for adults with DS."
(from the same article as quoted above).

 Right now, Sofia has me to "interpret" for her when she self-talks in public. But we worry - David especially - about what will happen as she goes off into the real world on her own more often. How will people perceive her when she self-talks? How will people treat her?

My own opinion is that all we can do is continue to educate and advocate. Any of you reading this now know something about self-talk. The next time you see an adult with a cognitive impairment engage in self-talk, you might be able to help advocate for them!

But if you see Sofia self-talking, feel free to ask her some questions! She's usually happy to try to explain what she's thinking about.

31 for 21: October 15 - in someone else's voice...

This appeared in http://america.aljazeera.com/opinions/2014/10/down-s-behind-thesmiles.html on October 15. I'll let it stand as my own post, too.

How the Down community sugarcoats difficult realities about the condition

October 15, 2014 2:00AM ET
Thirty years ago, Ronald Reagan declared October Down Syndrome Awareness Month. Ever since, too many efforts at awareness have relied on pictures of people with Down syndrome being cute, accompanied by constant, upbeat assertions that they and their families are all very happy.
Throughout October, adorable photos of people with Down syndrome and heartwarming, inspirational stories will stream across the Internet, all in the name of awareness. Shirts declare that extra chromosomes make you a hero. Other slogans and memes praise parents of children with Down syndrome. One T-shirt proclaims, “No frowns, just Downs!”

In fact, sometimes my son, a 7-year-old with Down syndrome, frowns. So do his parents. In the Down syndrome community, we have worked so hard to promote the positives that too frequently we leave no space to discuss the struggles.

Inspiration porn

Down syndrome, also known as trisomy 21, is a common mutation in which early embryonic cell division results in an extra copy of a chromosome. It causes a wide range of developmental delays, from very mild to severe, though our understanding of the potential of people with the condition continues to evolve.

The Down syndrome community, understandably, is deeply invested in spreading the relentlessly positive messages about the condition. In March, for World Down Syndrome Day, people were supposed to wear funny mismatched socks in service of awareness. A viral video showed people with Down syndrome dancing to Pharrell’s song “Happy.” Another, “Dear Future Mom,” offers heartwarming testimony from people with Down syndrome around the world to a hypothetical future mother of a Down syndrome child. At the end, they assure her, “People with Down syndrome can live a happy life.” Over 5 million people have watched it. I love this video. Happy lives are good, but is happy enough? What about inclusion, support, jobs, education, accessibility? How do we get past the low-hanging fruit of happy to do the hard work that our community needs?

It’s true that cute can go viral in a way that serious and thoughtful does not. However, such images often generate superficial responses: Viewers see the pictures, say “Aww” and move on. They do not become more aware of the real difficulties faced by the disability community.

There’s a term for this: “inspiration porn.” It describes images and stories in which the everyday actions of disabled people are repurposed to inspire people without disabilities. In the Down syndrome community, we have come to rely on “cuteness porn.” We teach the public that our kids are cute, but if that’s the end of the interaction, we have done nothing to build a more inclusive society. In fact, we may have erected new lines of exclusion by implying that only people with “cute” disabilities matter.

Please try again

Part of the sugarcoating stems from fear. Down syndrome can be detected prenatally. As technology changes, more women are being screened early in their pregnancies, resulting in fewer people with Down syndrome being born (although the precise causality is hard to track).

In response, the Down syndrome community  is trying to change the perception of what a diagnosis means. Both pro-abortion-rights and anti-abortion individuals — including parents, caregivers, self-advocates and medical professionals — have joined in a loose coalition they have dubbed pro-information. Pro-information materials aim to correct the incomplete information that leads many women to terminate their pregnancies after a diagnosis or screening. The solution is to make sure that women in such a situation get a complete picture before making an irrevocable decision.

Pro-information laws have begun appearing in some states, though not without becoming tools for anti-abortion activism in some cases.

My son’s value as a person is not based on his cuteness. What matters is our shared humanity.
The pro-information message offers a well-developed and complex response that I support. Such thoroughness isn’t, however, how we generally respond when issues related to Down syndrome enter public discourse.

Here’s an example: In mid-August, the scientist Richard Dawkins told his million Twitter followers what he would do in the case of a prenatal diagnosis. He tweeted, “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” He then tried to explain that his core principle in life was “a desire to increase the sum of happiness and reduce suffering.” He saw Down syndrome as a devastating disability that increased suffering.

After Dawkins’ tweets, disability activists around the world leapt to social media, the press and the airwaves, sharing cute pictures of people with Down syndrome. And boy, are they cute — princesses and big grins (that’s Trig Palin) and so much more. The argument of all these posts and comments was this: If Dawkins wants to increase happiness, then look at our families; we’re happy, so Dawkins is wrong.

In The New York Times, two scientists joined the fray. Jaime Edgin and Fabian Fernandez presented research that individuals with Down syndrome can experience both happiness and success, citing data from many studies. The picture of general stability and happiness of families in which a member has Down syndrome has been called the Down syndrome advantage.

All of this is true. My son has Down syndrome, and at the end of every day, he walks into the kitchen, wraps his arms around his chest, then says and signs the word “love.” He calls us — “Mommy!” “Daddy!” “Ellie!” We all come, he leans on a parental shoulder, and the four of us embrace for an intense daily moment of connection. His love is the glue that holds our family together. We are intensely lucky and happy.

He also happens to be supercute. But his value as a person is not based on his cuteness. What matters is our shared humanity.

‘Cute’ discriminates

There’s another problem: Not everyone in the Down syndrome community is happy. I know people fighting cancer, parents fighting school districts, fighting to find respite care or fighting to locate meaningful work for adults with Down syndrome.

Moreover, the Down syndrome advantage, taken too far, drives a wedge between groups of people with disabilities rather than promoting solidarity. There are people with disabilities who are not, by the standards of our society, cute or happy. There are people whose disabilities make life very hard for them, their families and their communities. Disability can increase suffering. Disability can limit happiness. Disability can cause stress and pain. If we accept the premise that Down syndrome should be valued because people with Down syndrome are happy, then does that mean everyone who isn’t happy lacks value?

The Stanford art historian Sianne Ngai is an expert on the meaning of cuteness. She writes, “Cuteness is a way of aestheticizing powerlessness … Cute objects — formally simple or noncomplex and deeply associated with the infantile, the feminine, and the unthreatening — get even cuter when perceived as injured or disabled.” The emphasis on cute, sweet, angelic and similar flat positive stereotypes does two things. First, it renders people with Down syndrome less than fully human. Pets are cute; humans are complicated. Our fear of eugenic abortion has led the community to adopt a mode of representation that erases those human complexities.

Second, if abortion is the problem, then cute isn’t even the answer for that. If we assert that life with Down syndrome is valuable because our kids are cute and our families are happy, even if that’s always true, then all we do is push the eugenic line down the disability hierarchy.

As a parent of a boy with Down syndrome, I have committed to the long game, not the low-hanging fruit of cute and happy. My goal is not to save Down syndrome but to change the way we think about and understand disability, normality and diversity.

Step one: See the whole person, not just the cute face.

David M. Perry writes on language and power at How Did We Get Into This Mess? He is a history professor at Dominican University


But I've gotta have a photo of Sofia:


Tuesday, October 14, 2014

31 for 21: Oct. 10 - 14

October 10

Sofia doing math homework (VIDEO)

October 11: Down Syndrome Buddy Walk

Tomorrow is the Buddy Walk! Such a fun event. It's not too late to join us, too!

However, I'm completely tapped out of ideas tonight, so I'm just copying this from the Mass Down Syndrome Congress (MDSC) website:

The MDSC Buddy Walk® Program gives individuals, schools, community groups, and local businesses across the state an opportunity to get involved in fundraising campaigns and events year-round, all intended to promote the acceptance and inclusion of people with Down syndrome.
The statewide campaign is anchored by our signature Buddy Walk & Family Festival. It also includes major and minor events throughout Massachusetts, such as Buddy Walk by the Sea on Cape Cod, the Buddy Walk & Harvest Fair in Central Massachusetts, a number of school fundraisers, Buddy Bucks Store campaigns, and other fundraisers endorsed by the MDSC.

This year’s theme “Champions!” is based on the Boston Strong mentality of people coming together to overcome challenges and the positive sense of community pride that has developed as a result. We’ll be able to highlight the true Champions of the Down syndrome movement here in Massachusetts and demonstrate the resilience of our community and how we all pull together to ensure that people with Down syndrome everywhere have opportunities to lead fulfilling lives.

History:

The Buddy Walk is an advocacy initiative launched in 1995 by The National Down Syndrome Society. It serves as a vehicle to generate significant awareness and understanding of Down syndrome nationally, while simultaneously raising critical funds to support local programs and services offered by The MDSC. As a proud affiliate of The NDSS, a portion of all proceeds from Buddy Walk campaigns go to support national advocacy initiatives aimed at improving the quality of life of individuals with Down syndrome.

October 12

No major post today for Down Syndrome Awareness Month. I'll let the photos speak for themselves - the Buddy Walk was FABULOUS! Miss Sofia was in a major grumpy mood the whole time, except when she got to see Tinkerbell. We are SO tired now!

Sofia with Arlie, Kendra and Kathy

Micah and David, looking cool

Sam

Sofia, Arlie, and Tinkerbell!

Blissing out in the sensory box


Ready to walk

Arlie, SamB and Victoria

Taking a call

Me and my girl







October 13: Being Herself

Sofia is all about being Sofia. Even when she is Princess Sofia - or Else (from Frozen) or Rapunzel (from Tangled) or Tiana (From the Princess & The Frog) - she is still Sofia. Her Sofia-ness is awesome.

She is never afraid to be herself.

She'll stop to do "yoga" or "exercise" in the middle of... just about everywhere.

She ran to join another family tossing around a football yesterday before the Buddy Walk. Just joined right in (and yelled "Leave 'Lone, Mom!").

For the past few months, she has been telling us that when she turns 10 (in February) she will get married. When I ask who she will marry, the answer is, "Sofia." Of course. Who else would be deserving of such awesomeness?

I'm not a shy person. (I know, news flash!). But my daughter's lack of shyness is breathtaking. She is so proud of herself. So bold. So brave.

I watch her, and I am ever amazed. And a teensy bit jealous.

 

October 14: Endocrinology

People with Down syndrome are more prone to thyroid issues. So we monitor Sofia's thyroid numbers regularly. Once, her numbers got closer to the "needing treatment" range, but then they went back to normal. Been fine ever since.

So we have been very lucky with that. But she still needs to have a blood draw every 4-6 months.
Blood draws - or as Sofia calls it, "Bloody Arm" - are not fun for kids. They are less fun for the grown-ups involved.

It generally takes at least three adults to hold her steady for a blood draw. She's gotten too big for my lap (which is a shame, since the blood draw chair also has that lovely built-in "arm"). So now she lays down on the bed, and I hold her upper body, non-draw arm, and her legs. A lab tech holds the arm that's being worked on. And another tech draws the blood.

The lab staff at Children's in Waltham is fabulous. Boston, not so much. They often have to call in a few extras.

When we take the boys for blood work, Sofia makes a big point of holding har arm tight behind her back and saying "No Bloody Arm" over and over. And moving well out of range.