Category: Culture

Maple Valley mom Nina O’Brien is on a mission. She’s working tirelessly to raise awareness for a rare genetic condition her 9 year-old daughter, Alana, was born with. Earlier this year, she wrote to Governor Inslee to request official acknowledgement of her daughter’s disability and was given a Governor’s Proclamation, naming August 22 ‘SATB2 Associated Syndrome Awareness Day.’

SATB2 is a rare genetic disorder that affects the second chromosome, characterized by significant developmental delays with limited to absent speech, behavioral issues, and craniofacial abnormalities. In Alana’s case, a portion of her second chromosome is in the wrong order, affecting nearly every organ in her body.  She has fragile bones, abnormal teeth, and significant cognitive disabilities. She requires help with eating, dressing and toileting. Pretty much any activity of daily life requires assistance. She is non-verbal and primarily communicates by using an iPad, touching images that correspond to words she wants to convey. One of her favorites is ‘Cookies.’ 

Despite the developmental and cognitive challenges she faces, Alana is much more than her disability. In fact, in many ways, she’s just like any other 9 year-old. “She has the sweetest giggle and a very bubbly personality,” Nina says. “She absolutely loves music, coloring, and milkshakes from McDonald’s. She’s charismatic and funny and is just a very happy kid.”

After spending years researching, going to conferences, meeting with doctors, therapists, educators and scientists, spreading awareness about SATB2 in her social circles and online, Nina requested official acknowledgement of SATB2 in April of this year and received a response from Governor Inslee the first week of August with the official proclamation.   

“I felt seen. I felt like Alana was seen,” Nina said of receiving the proclamation. “My whole attitude about her disability has changed over the past year. I’ve learned that this isn’t something to hide. It’s 2021. We should acknowledge it and seek to learn more. It deserves a Day. Alana and every other person who has SATB2 deserves to have their stories told.” 

The proclamation wasn’t the first milestone in Alana’s journey, however. In fact, she didn’t receive an official diagnosis until she was five years old, despite exhibiting serious symptoms her entire life. Because the condition wasn’t widely understood or acknowledged, it took years of physical and neurological testing, different therapies and observing Alana’s behavior both by doctors and caregivers, and a whole Exome Sequencing genetic testing that determined her final diagnosis of SATB2. Unfortunately, due to the lack of knowledge and experience surrounding the condition, many children go undiagnosed. While Nina was relieved to finally have a diagnosis, she knew the real work had just begun.

Going forward, Nina is hoping to spread awareness in public schools about SATB2, with all of its nuances and challenges, as well as collaborating with teachers, paraeducators and administrators to share strategies for supporting students who have the disability, as well as their caregivers. 

She is also hoping to inspire other people to learn more and consider getting their disabled child tested for this condition if they exhibit similar behaviors and challenges. She invites anyone who wants to learn more to be a part of the community, where they can connect with other families for support and education about SATB2. She’s also seeking funding to research more about this rare condition for things like therapies that can ease the symptoms and help kids like Alana become more self-sufficient. 

“These kids deserve the opportunity to live the best life they can,” Nina says. “Alana deserves it.” 

The proclamation from Governor Inslee is just the beginning of what she hopes will be a lot more awareness and understanding about this condition in the future.  

If you are looking for more information about SATB2 or want to donate, visit https://satb2gene.org/. 100 percent of the money raised this month goes towards researching SATB2 and helping kids like Alana. 

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CORE FEATURES OF SATB2-ASSOCIATED SYNDROME (SAS) CAN BE REMEMBERED BY THE FOLLOWING ACRONYM USING THE NAME OF THE SATB2 GENE:

S: Severe speech anomalies

A: Abnormalities of the palate

T: Teeth anomalies

B: Behavioral issues with or without Bone or Brain MRI anomalies2: Age of onset before 2 years

Cedar River Elementary has gone to the dogs.

The Watch D.O.G.S., that is. They’re everywhere: Monitoring the school parking lot in bright green vests, enthusiastically waving cars through the drop off lines and handing out high-fives, in classrooms reading to students, or even at lunch telling jokes. But they’re not the kind of dogs that bark. They are dads (and other father figures) who volunteer at their children’s school, connecting with students and getting involved in their education.

The vest and dog tags are business as usual for Watch D.O.G.S. dad Steve H., who has three kids at Cedar River and has volunteered with the program regularly for three years. Watch D.O.G.S. was introduced at his children’s previous school in 2015 to general excitement and enthusiasm. It was so well-received, in fact, that 500 dads, step-dads, uncles, grandpas and other father figures attended the kick-off event.

Watch D.O.G.S. (stands for ‘Dads of Great Students’) is a program initially launched at an Arkansas elementary school in 1998 and has grown to nearly 6,500 schools nationwide. The program allows for both dads and father figures to volunteer during the school day; providing an impact through being both a positive male role model and an extra set of eyes and ears on campus. 

“The Watch D.O.G.S. program is well represented within the Tahoma School District elementary schools,” says Eric Pisconski, the ‘Top Dog’, or head of the Watch D.O.G.S. program at Cedar River Elementary. “Cedar River currently has 132 dads registered; and 41 of those dads have already filled 91 volunteer slots.”

For Steve, there can be no higher honor.

“I volunteer every month. It’s so awesome to hang out with all the students and be involved in their learning,” he says. “It’s fun, and I like doing things to brighten their day. Giving high-fives is one of my favorite things, and the kids really like it.”

When Steve walks by a line of students and holds out his hand, almost all the kids who pass oblige; some enthusiastically, some with sheepish grins, and some who simply high-five automatically while talking to their friends.

Whether it’s helping students learn engineering, doing magic tricks in the lunchroom, or playing at recess, volunteering at the school is the highlight of Steve’s month.

“I love everything I get to do at school, but hanging out with the kids at recess is my favorite. We’ve had a few dance parties, we play wall ball, and the kids are always asking me to spin them on the playground equipment. I think recess is so important for kids. The exercise improves their mood and they go back into class feeling refreshed.”

But it’s not just dancing and high fives that connect Watch D.O.G.S. with students.

“The Watch D.O.G.S. program is an extremely valuable tool for getting more father figures directly involved in the daily lives or our kiddos,” Eric Pisconski says. “We tend to live hectic lives, rushing from one obligation to the next, but taking even one day to connect with our children in their environment is invaluable.”

The investment has paid off. According to Watch D.O.G.S. founder Jim Moore, the benefits of the program are astounding. Many school principals have reported that the mere presence of a Watch D.O.G.S. dad dramatically reduces reports of bullying. Fathers get a glimpse of their child’s everyday life and learn about the increasingly complex challenges and decisions today’s youth are facing. As a result, they can learn to relate better to their child and hopefully connect with them. Fathers also gain a greater awareness of the positive impact they can have on their child’s life in three critical areas: academic performance, self esteem, social behavior.

For some parents in the community who may have trouble finding the time to volunteer, Eric says they work hard to balance work and family obligations to allow as many dads as possible to join the program. “We are set up to handle multiple dads per day.  We will never turn away a dad saying, ‘No, sorry, we are full’.” This is an added benefit for busy parents, grandparents and other father figures who are worried about trying to fit it in their schedule, and can also give those who need it a break, because while being a Watch D.O.G.S. dad is a lot of fun, spending the day as a hero at their children’s school can be tiring.

“I always tell the dads at the kickoff, ‘You have no idea how exhausted you will be at the end of the day’,” Eric says.  “Most of them think I am joking, but you really have that ‘rock star’ vibe as a Watch D.O.G. You spend most of the day at all the different recesses – playing with the kids, giving out high fives, and engaging in lots of fun and funny conversations.

“Burn a sick day, take personal time, see if your employer will match volunteer hours, but volunteer and your kiddos will swell with pride getting to show you off for the day; and for some others, you might be the only positive male role model they get to see.”

If you would like to volunteer to be part of Watch D.O.G.S., contact your school’s PTO to find out who the head of the program is, or call the Tahoma School District at 425-413-3400 for more information.

I love reading. Most of my formative years and nearly all of my adolescent and teenage years were spent pouring over books at the local library. I went there to find my next adventure; whether it was riding a broomstick alongside Harry Potter, racing through the arctic tundra on a polar bear with Lyra Belacqua, or fighting on the back of a dragon with Eragon, my days (and many evenings) were spent engrossed in the world of my heroes. I discovered many injustices of history through The Diary of Anne Frank, Uncle Tom’s Cabin and Bury My Heart at Wounded Knee. I read books on caring for red-eared slider turtles, standing up to bullies (thanks, Matilda!) and why we need to save the bees to maintain our food supply.

But books weren’t all I got from the library. I also went there to do homework after school, study with my classmates, hang out and chat (quietly) with my best friend, play games on the computer and do research for projects. Not only was the whole establishment a haven of learning, the librarians who worked there were always kind, helpful and smart; the environment welcoming and comforting. Did I mention there were teddy bears in the reading corners? I relied heavily on the relaxation and comfort of my library for many years.

As I became an adult, however, I didn’t spend as much time there. Life got in the way. When I went to college, I typically used their “world-class” libraries, and internet research became faster and more beneficial than pouring over books. The library started slipping from my mind as resource for gaining knowledge and became a distant memory. I was always on the go, I didn’t have time to sit and peruse the shelves or chat with the librarians.

Then, as Amazon became the world’s most popular book retailer, I quickly migrated to just buying new books online and having them delivered to feed my reading addiction. I was an adult with a grown-up job and financial resources I never had before. Sure, buying all the brand new books I wanted took a huge chunk out of my pocket, but I considered myself mature enough to not need to borrow my content anymore. I am still an avid reader, obsessed with self-help books and high fantasy, but at one point, I was between jobs and my new book budget all but evaporated. I lamented the loss to one of my friends once, wondering how I would ever maintain my love of reading while being broke, and they asked me simply, “Why don’t you just go to the library?” And then it hit me. Why didn’t I just go to the library? Because I thought it outdated and time-consuming. Because as the years passed and I became so engrossed in work and productivity and free delivery, I had completely forgotten about the haven that brought me so much comfort in my youth.

After that interaction, I raced to the library the first chance I got. I applied for a new library card and immediately borrowed three books that I had sitting in my Amazon cart for a month. In three weeks, I returned those books and borrowed two more. While I was there, I checked out the events and community notice board. I was shocked to see all of the cool things that the library, the free, public library offered. Harry Potter trivia and potions classes, lego building meetups, board game nights, genealogy resource classes, computer and software training, family storytimes and even science classes. There were events for everyone, from newborns to students, teens and parents and senior citizens. The library didn’t discriminate; it was a hub for bringing the community together the way Amazon never could, even after all this time. As I grew, I expected the library to stay stagnant, with nothing but piles of dusty old books on the shelves, but I was wrong. Their entire catalog is now online. You can check if your book is in stock and even place a hold or add yourself to the waiting list from the comfort of your own home. You can view and register for their events and classes, and to my absolute delight, you can electronically borrow thousands of audiobooks right from your home computer, which is perfect for anyone who has to commute or doesn’t have as much time to sit and read. Good-bye, Audible subscription!

Unfortunately, with all the talk over the years about reducing costs, slashing budgets and being “fiscally responsible,” many states have made the unfortunate decision to cut funding from our local libraries. This is a mistake that will cost our country a lot more than it will save in the end, and here’s why:

The library is one of the only places left in our country that does not require you to pay anything to walk in the door. You can sit for hours in their comfy armchairs or at their expansive desks. The library doesn’t make you buy anything to use their computers or bathrooms. Its employees don’t harass you for loitering or give you the stink eye until you feel unwelcome. As our society has progressed further into late stage capitalism, those places are few and far between. Admittedly, we do have to pay some taxes to fund local libraries, as we do with all social programs, but the cost is insubstantial based on the value it provides to all citizens, no matter their income level or social status, and I guarantee that the cost is infinitesimal compared to the taxes we pay to keep Amazon from leaving Seattle.

For those who don’t have the Amazon budget or access to a fancy college library, this makes all the difference in the kind of education they get. Did you know the library can help you fill out government forms, for things ranging from healthcare to income taxes? They offer meeting rooms for free and you can reserve them online. They can also teach you how to find jobs or write a resume, apply for college scholarships, learn the ins and outs of Microsoft Excel, start an indoor herb garden, launch a small business or even help parents teach their children mindfulness. The number of programs the library offers is staggering, and if we were to collectively advocate for more state funding, these programs could branch out even more.

With all the political polarization and the rise of “fake news,” over the years, the library can be a respite from all of that. True, not everything that is printed and put in a library is factually accurate and unbiased 100% of the time, but you can bet that among the wealth of resources, you aren’t going to find scraps of paper stuffed between the books with images of Minions superimposed with text like “9/11 was an inside job” or “Socialism wants to take the food right out of your mouth.” That is the unfortunate reality we are facing when we rely on social media for our news and information.

Fully funded libraries will help us discover the cure for cancer. The next May Angelou or Karl Marx; the next Ada Lovelace, or Greta Thunberg. There are billions of people out there with the next big idea; the next level of thinking that will solve many of the world’s problems, but when we require that they must reach a certain income level or social status before they can gain access to the resources that will help them change the world, those voices are silenced; their ideas lost or forgotten under the weight of the cost of living.

Free or low-cost access to information and knowledge is vitally important to the betterment of our society, and the public library is the catalyst that will get us there. Donate if you can to your local public library, and ask your employer to match it. Volunteer to help with their events or serve on their advisory boards, take one of their classes, check out some books, or at the very least, walk in the door. Increased demand and foot traffic will show that libraries are still very important and it will put pressure on politicians to divert more funding and resources to them. But, most of all, go to the library because it rocks. I have a few good book recommendations if you need them.

Temperatures were down to the mid ‘30s, but spirits were high

It was a message of inclusion and unity that kicked off the fourth annual Maple Valley Hometown Holidays and Tree Lighting event on Thursday, December 6. Hundreds gathered in the square at Four Corners, huddled together against the cold, to hear the Mayor’s welcome and listen to messages about the importance of community, hometown values and respecting diversity in the ever-growing city of Maple Valley, before watching the magnificent Spruce light up for the first time this holiday season.

The City Manager, Laura Philpot, introduced Mayor Sean P. Kelly, who was joined by the Maple Valley city councilors. Mayor Kelly first recognized guests from Puget Sound Fire Authority, former council members, the Maple Valley police department, and event coordinators before relinquishing the mic to Director of the Maple Valley Parks Department, Dave Johnson. Johnson recognized the generous sponsors who helped make the event possible, with Brightest Star Sponsors Fred Meyer and Johnson’s Home and Garden topping the list. 

Next, the city councilors took turns talking about the upcoming events of the evening, beginning with a brief history on the time-honored tradition of national tree lighting, and the hope and peace that the holiday season brings.

“No matter our faith or background, this time of year evokes feelings of family and community. We realize that people celebrate a variety of holidays this time of year,” said councilor Syd Dawson. “Whether it’s Christmas, Kwanzaa, Hanukkah, Diwali, the Solstice, a Festivus for the Rest of Us, or something else, and some people who choose to celebrate none, we encourage you to embrace and be respectful of these differences by taking an interest in your neighbor’s traditions and making them feel welcome.”

Mayor Kelly returned to thank everyone who helped put on the event, and offer closing remarks. “The holidays are a time for joy with family, friends, celebrating and blessings that we all have going on right now.” Then the countdown began, the tree was lit, and the evening’s celebrations were officially underway.

Frosty the Snowman, Santa himself and the Grinch were all rumored to be hanging around the Fred Meyer parking lot near the spruce tree, while Wilderness Animal Hospital’s real reindeer exhibit could be found across the street in the Johnson’s Home and Garden lot. A brightly lit kiddie train transported excited groups of youngsters around the parking lot, passing by Panera Bread, Grocery Outlet, Discovery Playtown and more before returning to the station.

After making their way through the tents with Maple Valley Bar and Grill servicing snacks, and Fairway Mortgage offering light vision glasses, event attendees shuffled inside Johnson’s Garden Center, where they were treated to beautiful holiday music by Maple Valley Youth Symphony Orchestra. Further along, one of the longest lines of people was for balloon animals from Kriss Chiropractic. Discovery Playtown invited community members inside for a holiday card crafting event. Kids of all ages used stickers, stamps, crayons, markers and glue to make the perfect card. They were offered the chance to bring their cards home, if they wanted, or they were invited to put their card in Discovery Playtown’s mailbox, for delivery straight to the North Pole.

Tahoma School District offered transportation between events, and Santa arrived by fire truck.
Panera Bread had a cookie decorating station, Maple Valley Modern Dentistry offered a corn hole game, and Steamboat Studio offered craft tutorials for shivering, albeit excited, youngsters as the evening wore on. Maple Valley Police were handing out sticker badges and taking pictures with aspiring future law enforcement officials and adoring fans alike, and Cascadia Kids Dentistry had a majestic trolley ride whisking passengers around the parking lot throughout the evening. Generational Hope Church featured a live nativity, Fred Meyer offered face painting, and there were hot drinks to fight against the cold and delicious holiday treats for people to enjoy at every turn.

While the population and landscape of Maple Valley have changed over the years, the hometown spirit has not, and the success of the annual Hometown Holidays events proves the city still retains the sense of community that makes it so special.