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Becoming a Warrior

How One Brave Mom Is Navigating a Down Syndrome Diagnosis

 

Endurance over Speed

“I was going to do it all,” thought Florida mom, attorney and passionate special needs advocate Catherine Davey. A notion planted in almost every mother’s head and heart from the moment she sees the second line appear on a pregnancy test. Or, in Davey’s case, when she and her husband discovered they were expecting their third child, even when science had told them it would be impossible. In this case, the stakes were even higher, as they learned that their daughter would be born with Down syndrome.

As Davey soon found out, even before her spitfire daughter — Mae, now 6 — was born, the journey of parenting a child with Down syndrome would be a marathon, not a sprint. Fortunately, unlike most marathons, Davey learned that it would not be a solo endeavor, and that doing it all herself wouldn’t, and shouldn’t, be her expectation.

 

Find Your Tribe

Through the initial surprise and grief of the diagnosis, Davey and her family landed firmly in a place of optimism and unconditional love. The next step seemed logical; find others who have navigated a similar journey. Davey was shocked at the valuable relationships her village was able to provide.

She encourages anyone parenting or expecting a child with Down syndrome to join their local Down syndrome association. These communities are welcoming, encouraging and comforting. They offer transparency about their own experiences and an unparalleled sense of empathy, free of the kind of sympathy that can feel disingenuous.

“It’s a safe place to talk about DS, with people who love DS,” Davey said.

“They’ve seen the best, they’ve seen the worst, and they’re happy to love you. [Because] parenting a child with special needs isn’t competitive. It’s collaborative.”

 

Strategies to Survive and Thrive

The old adage that there is no playbook for parenting rings a little false to Davey because one of the best resources she’s discovered is an actual playbook for following up on potential medical issues for a baby/child with Down syndrome. Of course, each child’s journey is a little different, but the steps and situations discussed are tried and true. Davey found great success in following along when these scenarios mimicked her own experiences almost exactly.

Assembling your medical, emotional and mental support teams is also a crucial element according to Davey. From identifying top resources to finding the right person for your child, this one aspect simply cannot have a one-size-fits-all approach. And just because someone is internationally renowned, doesn’t necessarily mean they’ll be the right fit for your child. Similarly, what is working one month may not the next.

Davey says that you should feel empowered to find the right team for your family, and even if you find the perfect team for now, that does not mean they will always be the perfect team. Don’t be afraid to move on if that is what is best for your family.

Empowerment is important for any parent and child, but especially so for those working through special needs.

Davey advocates for utilizing every resource possible, including opening a tax-advantaged ABLE United savings account, to help support costs associated with care. Davey utilizes Mae’s ABLE account to pay for her different therapies — including applied behavior analysis, which she credits as helping Mae master skills and overcome challenges that are common for children with Down syndrome but are not covered by the family’s health insurance.

 

A Little Education Goes a Long Way

Unfortunately, a Down syndrome diagnosis can sometimes mean experiencing prejudice from even well-intentioned people. Davey recommends educating yourself to be prepared and empowered — so that you can focus on how to help your child rise to their full potential.

Normalizing Down syndrome is an ongoing effort that Davey is proud to be a part of. For instance, per Davey, “One in every 691 live births is a child with Down syndrome.” Staggering numbers such as this suggest the Down syndrome experience is everywhere in every race, every culture, and every financial level. Armed with those statistics and confident attitude, Davey is ready to take on the hardest part of parenting a child with Down syndrome: changing the world so that others can see the joy as well.

 

Find the Help You Need — to Be the Parent You Want to Be

There isn’t a parent in America who doesn’t feel overwhelmed from time to time, and this will undoubtedly apply to a parent raising a child with special needs. It’s okay to ask for help. Read that again — it’s okay, imperative, in fact, to ask for help. This means more than finding the right medical professionals and educational resources for your children. This could mean finding your own therapist, hiring a mother’s helper, asking a friend for help, delegating duties to older children, spouses or extended family — so that you can become the parent your child needs.

For Davey, her path to advocate, and ultimately warrior, was a clear one. She is a practicing attorney who has always practiced in the area of probate, guardianship and estate planning and has put that education and expertise to work for her family. Davey and her team, always careful to give credit where it’s due, were able to identify some gaps in Florida’s laws and rules as they pertain to guardian advocacy. Through hard work, dedication and collaboration, the Florida Supreme Court approved Davey’s work. Davey was quick to add that her path will undoubtedly look different from someone else’s, but the most important thing is to be true to who you are as a parent and as a person.

 

More than a Diagnosis — a Destiny

Though no parent imagines walking the path of a Down syndrome diagnosis, Davey is convinced that anyone who begins that journey will come to view it as a blessing. There are certainly challenges, but the highs are exhilarating. Watching your child achieve a lofty goal, seeing them change the world with their unabashed enthusiasm for life — these make up the best part of navigating a Down syndrome diagnosis.

“You’re always going to be a warrior for them,” Davey said.

Mae on a JumboTron in Times Square NYC

In 2018, the Davey family traveled to New York City to see Mae appear on a jumbotron in Times Square as part of the National Down Syndrome Society NYC Buddy Walk. A thrilling and telling experience for Davey who says, at the end of the day, if you ensure that your child is the star of their own show, then no diagnosis will derail their opportunity for a full life.

“This kid has made me the best version of myself. She’s turned my volume all the way up,” Davey beamed. “To see her succeed; to see her communicate; to see her be proud of herself and ride a bicycle and just be joyful is amazing. And she brings all of that out in all of us.”

Faces of ABLE: Geno

Born and raised in Miami, Geno is a star athlete on the Special Olympics National Team representing Florida in softball. His infectious personality makes him a stellar teammate and friend.

At an early age, Geno was diagnosed with autism but that has not slowed him down. In addition to the medals he’s won during his time competing in the Special Olympics, he has also served as a Customer Service Representative at Publix for 12 years.

His mother, Shebah, often describes her son as “gregarious.” Shebah shared that he enjoys everything that the Sunshine State has to offer, including sports (his favorite team being the Miami Heat), fishing, and music.

To ensure Geno’s financial future, Shebah recently opened an ABLE United account. “Being a single mother, I understand how important his financial independence would be to improve his quality of life,” she explained.

Since the day he was born, Shebah has wanted the best for Geno and has worked hard to set him up for success.

“Even before his diagnosis, I wanted Geno to be an active member of the community, contributing his many talents, regardless of his career path or disability,” she shared.

As advocates of the savings program, Geno and his mother are teaming up as the newest ABLE United Ambassadors. “We are excited to share with others how ABLE United has helped set him up for success and truly achieve a better life experience,” Shebah said proudly.

ABLE at Home

The spring months generally provide the ABLE United team an opportunity to connect with thousands of Floridians with disabilities at in-person events, conferences and special presentations.  However, in this time of social distancing, we know that’s just not possible.

In an effort to stay connected, we are launching the ABLE at Home campaign.

From new hobbies and science experiments to learning life skills, connecting virtually with others and extending kind gestures to neighbors and friends – many are using this extra time to find the “silver lining.”

Throughout the month of May and June, we want to hear how you are spending your time at home. Share a photo of yourself and what you’re up to at home to be entered into our ABLE at Home giveaway. Three grand prize winners will win a brand new 10.2-inch iPad to help you stay connected with family, friends – even classmates. To review the iPad Promotion Guidelines, please click here

But, wait, there’s more.

Individuals who enroll in a new account between Friday, May 1 and Tuesday, June 30 and complete enrollment by depositing at least $25, will receive a FREE $75 contribution on us.

We hope that you’ll consider using this time to add enrolling in an ABLE United account to your to-do list and make saving for you or your loved one part of your daily, weekly or monthly routine.

We look forward to “seeing” you all this month while #ABLEatHome.

*Promotion Guidelines:
Enroll in a new ABLE United account between May 1, 2020 and June 30, 2020 on ableunited.com, and you will receive a $75 contribution into your new ABLE United account. This offer only applies to new accounts opened between May 1, 2020 and June 30, 2020. Funds earned will be deposited directly into your ABLE United account by October 1, 2020. ABLE United is a savings and investment plan that may be used to set aside funds for qualified disability expenses. Funds may be used tax-free to pay for any qualified disability expense. This promotion is limited to the first 500 accounts.  ABLE United reserves the right at its sole discretion to disqualify any individual it finds to be in violation of the guidelines or any laws, or to be attempting to undermine the legitimate operation of the promotion by cheating, hacking, deception, or any other unfair practices. Please review the Program Description and Participation Agreement before opening an account.

$50 Summer Promotion

Question: What should every individual with a disability have?

Answer: If they qualify, an ABLE United account.

ABLE United accounts offer the ability to save while maintaining SSI and Medicaid.  Family and friends can contribute to the account as well, and earnings are tax-free when used for qualified expenses.   Now, to help you get started, we are kicking off the summer season with a special offer for new account holders.

If you open a new account anytime between May 1 – July 31, 2019, ABLE United will contribute $50 into your account to help you get a head start on saving!*

Did you know that we recently introduced new account features to ensure that individuals with a disability can save for a better life experience in the way that best fits their needs and goals?

New features include:

  • FDIC-insured savings option for peace of mind
  • Ability to choose how you withdraw funds to allow you to use your account your way
  • Enhanced gifting page to allow others to support you in reaching your savings goals
  • Live chat with Customer Service to answer all your questions

Opening an account is quick, easy and free – below is the information you will need to get started:

  • Personal identifying information of the account owner and if necessary the person opening the account on their behalf
  • Banking information
  • Selection of savings or investment options
  • A contribution as little as $25 to get started.

There’s never been a better time to start saving than now. Open your account today

*Promotion Guidelines:

Enroll in a new ABLE United account between May 1, 2019 and July 31, 2019 on ableunited.com, and you will receive a $50 contribution into your new ABLE United account. This offer only applies to new accounts opened between May 1, 2019 and July 31, 2019. Funds earned will be deposited directly into your ABLE United account by October 31, 2019. ABLE United is a savings and investment plan that may be used to set aside funds for qualified disability expenses. Funds may be used tax-free to pay for any qualified disability expense. This promotion is limited to the first 5,000 accounts.  ABLE United reserves the right at its sole discretion to disqualify any individual it finds to be in violation of the guidelines or any laws, or to be attempting to undermine the legitimate operation of the promotion by cheating, hacking, deception, or any other unfair practices. Please review the Program Description and Participation Agreement before opening an account.

Account Enhancement Highlight: FDIC Savings Fund

At ABLE United, we offer account holders professionally managed savings and investment options. These options include predesigned portfolios and individual funds from which customers can build a custom portfolio.

With the recent transition of our Customer Service and Records Management to Sumday Administration, LLC, a wholly-owned subsidiary of the Bank of New York (BNY) Mellon, we are excited to introduce an FDIC Savings Fund to the investment and savings options available to our customers.

The FDIC Savings Fund is an FDIC-insured savings account option with funds placed in a demand deposit account established by the Trust at the Bank of New York Mellon (Bank). FDIC insurance generally protects up to $250,000 of your deposits at the same bank in the same ownership right and capacity. The funds in your ABLE account invested in the FDIC Savings Fund, along with other deposits you hold at the Bank, will be insured up to $250,000.

This transition also provides more flexibility for customers by allowing the account holder to select which fund(s) to withdraw money from – an easy way to manage your investments separate from your savings.

It’s important to know that any new contributions can be directed toward any of the available savings and investment options, and all current investments can be transferred between savings and investment options up to two times per year.  To make changes to your current investments, simply sign in to your account, click on the Investments tab, and look for the Change Strategy link under the Total Balance section.

We provide performance summaries for each of the eight savings and investment options on a monthly basis, which consists of the investment returns for each option net of the Investment Administration Fee (note: there is no Investment Administration Fee for the FDIC Savings Fund).

Have questions? Contact Customer Service through live chat or by calling toll free at:

1-888-524-ABLE (2253) (Monday – Friday, 9am – 6 pm ET)

1-844-888-2253 TTY (Monday – Friday, 9 am – 8 pm ET)

Enroll now and receive a $50 account contribution

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