Finding Ways to Give Back

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Our area in Tennessee affords us many opportunities. We have the Down Syndrome Association of Middle Tennessee, an organization which creates many opportunities for DS-friendly and caregiver-oriented recreation, learning, advocacy, and community. Middle Tennessee also has a new Gigi’s Playhouse, a facility for gathering, tutoring, and therapy for people with Down Syndrome and their families.

Hundreds (thousands?) of families benefit from these organizations and others. Many people want to give back. Of course donating is a huge help, but not everyone has that luxury. People with special needs often require extra money for various things, like adaptive technology or medical bills, and can’t donate even when they want to. The same goes for time that families might use to volunteer in different capacities. Therapy appointments, developmental delays that make movement and transport slower, and meetings with doctors and schools can eat up a lot of the time that people would rather use to support their favorite non-profits.

We Peaches are fortunate enough to have one parent at home most of the time. But even with that, it can be difficult for us to find ways to help out, and even more rare to find ways to help that play to our strengths. Sometimes we’ve used up so much of our cost-free childcare (family and friends) that we don’t feel comfortable asking for more to do something that, while helpful, isn’t urgent.

I’m lucky. I’m good at making videos, which maybe isn’t as practical as carpentry or owning a large truck that can haul stuff, but which can bring exposure to programs. That means more people who need the services will learn about them, and more people who can help with those programs will become aware.

This year I have a goal of making one three-minute video every month for DSAMT, so that when fundraising kicks into high gear for the Buddy Walk in October, we’ll already have lots of edited video to pull from for a year-spanning campaign video. The January video is of Circle of Friends, and I urge you to check it out and learn about the program. Next month I’ll cover a baby shower for DSAMT’s newest members that takes place at Gigi’s Playhouse.

It only takes an hour or two to shoot the video. It takes longer to edit, but I’m able to squeeze editing time into occasional down times during the day and night.

I’m very happy and fortunate to be able to help with these videos. It isn’t easy to find the time in the middle of caring for our two girls, going to college, taking care of and spending time with my wife, and attempting to have friends and family around for reasons other than needing help with the kids.

I strongly encourage any of you in similar situations to take a moment to think about what your strengths are, and to reach out to any local organizations which have served you, and ask them if you can serve them in return using whatever your special strength is.

***UPDATE*** Go here to see more videos I made for DSAMT this year, including the aforementioned baby shower video!

Sibling stuff with Sofia

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(Sofia trains while Nadia naps.)

One of the most worrying aspects of parenting a child with Down Syndrome is the question of how to divide time and attention between the kid with DS and the other kid(s). This conundrum isn’t unique to special-needs parenting, even if the details are.

Vanderbilt Children's Hospital has lots of areas for parents to play with siblings who can't always enter the patient rooms.

Vanderbilt Children’s Hospital has lots of areas for parents to play with siblings who can’t always enter the patient rooms.

Nadia was in the hospital for over a month when she was born. Sofia, who was nearly two, stayed with family. Jessica and I mostly stayed with Nadia. It was bittersweet when we learned that Sofia had her first potty-training success in our absence. We were proud that Sofia continued to flourish without us, but we knew not to always rely on that. Resentment in children manifests unpredictably.

Here are some tips on how to keep your typical kids feeling loved and attended to. Your situation is unique, but I hope these help. 

Sofia's best kite-flying this year happened in a field behind Nadia's therapy appointments, when Nadia was working.

Sofia’s best kite-flying this year happened in a field behind Nadia’s therapy appointments, when Nadia was working.

  • Take advantage of waiting time. Nadia has one-hour therapy session three days a week. While Nadia is working, Sofia and I walk down the street for snacks, or fly kites, or just talk and play in the waiting room. This way our therapy trips get to be Sofia’s special one-on-one time with Daddy.
Fairs have lines. Nadia ain't so great with lines. Fairs run late. Nadia ain't so great with late.

Fairs have lines. Nadia ain’t so great with lines. Fairs run late. Nadia ain’t so great with late.

  • Don’t be afraid to abandon inclusion for short periods. Even entirely typical families deal with differences in ages and abilities between siblings. We try to balance some of that “all about Nadia time” with a little “all  about Sofia” time. Example: Nadia stayed with Jessica’s sister while we took Sofia to the state fair, which allowed us to stay longer and do more. Nadia didn’t miss us because she loves her aunt and cousin. 
  • Listen to your typical kid. If Sofia is acting out of sorts, I do my best and slow down to talk to her, and give her plenty of time to explain herself. It’s unwise to assume that all the Nadia attention is the problem, but it’s also unwise to assume the opposite. 
  • You’re never gonna nail it. Don’t beat yourself up for getting this aspect wrong. You will nearly always be doing too much or too little. Just stay mindful, and things will be fine. 

Turning 21: The Exact Moment When The State Shrugs

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Nadia at the 2013 DSAMT Buddy Walk, where she decided to split off and sit for a moment. All of her DS-related appointments leave us little time to contemplate her as an adult.

Nadia at the 2013 DSAMT Buddy Walk, where she decided to split off and sit for a moment. All of her DS-related appointments leave us little time to contemplate her as an adult.

Parenting a young child with Down Syndrome can take so much time and energy that it can be easy to forget that she will one day be an adult with Down Syndrome.

Nadia turns three next March, and will immediately enter Nashville’s public school system. We’re in the middle of paperwork and school tours and meetings, and just barely finding enough time in between to be very worried about sending our special little girl into a building full of strangers five days a week. In fact, we are so concerned with her turning three that we can’t begin to think about Nadia becoming an adult.

The good news is that there are many people who have gone before us who can advise us on planning for Nadia’s adulthood. The bad news is that the state government seems to share our problem with foresight.

Clover Bottom, which is part of the Tennessee Department of Intellectual and Developmental Disability campus in Nashville. The facility is supposed to close, but the State Comptroller audit says that not enough effort has been made towards that goal.

Clover Bottom, which is part of the Tennessee Department of Intellectual and Developmental Disability campus in Nashville. The facility is supposed to close, but the State Comptroller audit says that not enough effort has been made towards that goal.

While The Peaches were knee-deep in planning for early-intervention preschool, The Tennessean published a piece about a State Comptroller’s audit of Tennessee’s Department of Intellectual and Developmental Disabilities (DIDD). Writer Anita Wadhwani focused on a major problem, which is that after children with disabilities “age-out” of the public school system at 21, they lose access to many crucial therapeutic and educational services.

Though the Tennessee Early Intervention System works hard to identify and assist children with disabilities, the truth is that much of the work done during school years can be mitigated without continued assistance in adult years. The individual attention that kids with special needs get in the school system seems to disappear once they are adults, though the need remains. PBS recently aired a documentary on the issue called Best Kept Secret.

Legislative and cultural considerations for people with special needs have come far. Before we had Nadia, we really had no concept of the world of services that the government offers children with Down Syndrome. Perhaps the state (like The Peaches) focuses so intensely on caring for children with disabilities that it forgets adults with disabilities.

And, you know. . .I get it. But if my family has to fix that lack of foresight, so does Tennessee.

When Rain Illuminates: 2013 DSAMT Buddy Walk

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The Official Nadia Peach Fan Club at the 2013 DSAMT Buddy Walk

The Official Nadia Peach Fan Club at the 2013 DSAMT Buddy Walk

This 2013 Buddy Walk for the Down Syndrome Association of Middle Tennessee was held on a very rainy and rather cold (49 degrees) Saturday, October 19th.

The Peaches raised much more money this year than we had in any previous year, thanks to many generous friends and family.

Family came to Nashville from all over the country to join us and help prepare. More friends than we’d expected joined us. Jessica wore herself out preparing food and decorations.

Jessica was very sad when we arrived, because the weather was very dismal, which made her feel that her preparations were for naught.

They weren’t.

Yes, it rained a lot. Yes, it was cold. But the poor weather added an element that actually brought out the spirit of the event in an unexpected way.

Nadia w/cheerleaders at the 2013 DSAMT Buddy Walk
Just across the street, a stadium of 40,000 people were watching a football game. Americans don’t bat an eye at sports fans freezing and soaking themselves in bad weather to watch dozens of men repeatedly running into each other while half-naked women dance on the side. It’s just normal.

Mount Juliet Middle School cheerleaders waited just off the Buddy Walk path, about halfway through. While our group paused for a moment, the cheerleaders chanted Nadia’s name and clapped. Several of us cried. Special needs families and individuals often struggle to find acceptance and a voice in our culture, so it was incredibly moving for teens who could be doing anything else with their Saturday to be out there with us.

[youtube=http://www.youtube.com/watch?v=mN-IuOlwrKM&feature=youtu.be]
It’s great to have friends and family surround you in support when the sun is out and there are no clouds. Much greater is when none of them would be outside if they weren’t going far out of their way to let you know how much they love you. This is what happened in our tent, and across more families than I could count, and also with the volunteers. You wouldn’t be able to tell it by the forecast, but 2013 was easily the best Buddy Walk that The Peaches have been a part of.

The Weaponization of Our Community in the Political Sphere

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(The relevant part starts at 7:30)

Senator Rand Paul (R-Ky.)  recently gave a speech predicting that scientific advances that allow us to know more about our children early on in pregnancies will soon lead to people choosing to abort for reasons that would fall under the concept of eugenics.

Eugenics is a massive and complicated topic that is not at all simplified by mentioning its most famous invocation. Here, though, I’d like to focus on how Senator Paul’s point applies to the Down Syndrome community.

Sen. Paul is seemingly and partly referencing something that Rick Santorum brought up in the last GOP presidential primary, which is that abortion rates following Down Syndrome diagnoses are very high compared to abortion rates in general. The magnitude of the difference is debateable, but the implication is unavoidable:

Some people prefer to terminate rather than have a child with DS. But why?

Some of those abortions would have happened with or without DS.  Maybe the extra money involved creates fear. The numbers on that are all over the place, though.

[youtube=http://www.youtube.com/watch?v=yI6gaJx2oDk&w=420&h=315]

(One of the old, but persistent, misconceptions of kids with DS is that they are incapable. Therapy helps greatly,  and it’s also usually fun.)

In my barely-informed opinion, a lot of the difference in abortion rates comes from a lack of knowledge about Down Syndrome. For those women who choose to terminate specifically because of a Down Syndrome diagnosis, it’s hard for me to believe that most of them would do so if they had full access to genetic counselors, knowledgeable parents of kids with DS, and adults with DS.

Jessica and I found out about Nadia early on, and we chose to have her. Our doctors were connected to a doctor army that fills two hospitals. We had good insurance. We had time to read and access to a world of knowledge.

Not everyone has such luxuries.

Vanderbilt Children’s Hospital, which connected us to the DS community in Nashville. Not all families have such access, which may lead to more DS-influenced abortions.

Eugenics and abortion are conversational landmines, but I think most in the DS community can agree that better awareness of DS would be a good thing for everyone. It’s my belief that increasing awareness and connecting prospective mothers to resources would also decrease the difference in abortion rates.

And if closing that gap would keep politicians from using our shared community as a weapon in their campaigns, I think that would be good, too. When I hear a politician bringing up Down Syndrome, I want the topic to be Down Syndrome.