A year ago, we shared the inspiring story of Tirza Mercato, HHG Counselor at Movers International and mother to Hailey Rose, her young daughter diagnosed with Kabuki Syndrome. As a counselor and as a parent who has recently relocated with her family, Tirza has first-hand insight into the inherent challenges of living and moving with an invisible disability.
An invisible disability can be in the form of a mental, physical, or neurological condition or chronic illness and can limit or challenge a person's movement or senses, impacting their daily lives. But because the illness or condition isn't immediately visible to those around them, those living with these challenges are prone to judgment, false conceptions, and misunderstandings by those around them. It also means they may not receive the same support and empathy as those who are visibly impaired.
We are grateful that Tirza agreed to re-share her inspirational story, offer an update on what’s happened since, and deliver some valuable intel on how other families living with invisible disabilities can navigate their transition with confidence and winning outcomes!
Describe yourself and your family, and how raising a child with a unique ability has impacted your career and family dynamic.
I am part of a close-knit family of six, where each member plays a distinct role. My eldest daughter, Hailey Rose, holds a special place in our hearts. Her journey with Kabuki Syndrome, diagnosed after years of evaluation, has shaped our lives in profound ways. Kabuki Syndrome, discovered in 1967, affects approximately 1 in 32,000 births due to genetic mutations.
Hailey faces multiple challenges stemming from this condition, including congenital heart disease, scoliosis, cognitive/developmental delays, and numerous other health issues. Despite these hurdles, she possesses remarkable qualities and a strong memory in specific domains. Our family’s path has been arduous yet transformative. We continually adapt to Hailey’s needs, navigating medical, emotional, physical, and educational dimensions daily.
This journey has also significantly influenced my career trajectory. Advocating for Hailey has refined my skills as a passionate advocate, both for her and for myself in all life settings. I have learned to strive for nothing but the best for her and our family, refusing to settle in a world that sometimes contradicts our needs.
Hailey shares a typical sibling dynamic with her brothers and sisters in our household, alternating between affection and occasional space. From a young age, her siblings have been educated about her invisible challenges, fostering understanding and empathy.
In essence, our family’s story illustrates resilience, adaptation, and the profound impact of unconditional love in the face of adversity.
What were your concerns about accepting a relocation for you personally and your family?
We carefully evaluated the decision to relocate, considering its implications for me and our entire family. Recognizing that significant changes can be challenging, we took the time to assess the advantages and disadvantages of moving and to ensure that our employer offered adequate support to facilitate a smooth transition. Among the specific questions and concerns we addressed were:
- What lifestyle does the new location offer, and what might it lack compared to our current situation?
- Is it in the best interest of our children to move from a small town to a larger city? Will it impact our children, particularly in terms of adjustment?
- Are sufficient programs and resources available to support Hailey’s needs in the new area?
- Which educational environment—public, charter, or private—would best suit Hailey’s requirements?
These considerations were essential in making an informed decision to benefit our family’s well-being and ensure a positive experience amidst the changes ahead.
What ultimately factored into your decision-making process to make the move?
Hailey’s educational and medical needs primarily drove the decision to relocate. We felt that the small city we were living in wasn’t adequately supporting her potential, especially given her neurological disorder.
After accepting our new positions, we were focused on mentally preparing the children, particularly Hailey, for the move. It was crucial to ensure her safety and well-being amidst the transition. Even though we had a tight timeframe—just two weeks — it meant we had to organize everything rapidly: finding a realtor, housing arrangements, new doctors, schools, daycare, and children’s school transportation while managing the logistics of packing and moving.
Moving with a childlike daughter comes with challenges, including potential meltdowns and behavioral adjustments. However, despite the stress and anxiety, we knew this change was necessary for Hailey’s future and our family’s overall well-being. It marked the beginning of a new and hopeful chapter in our lives.
Working at Weichert/Movers International has been truly transformative for me. My position has provided me with flexibility and a genuine work-life balance. Most importantly, I can freely advocate for my daughter.
I’m thrilled to report that the move has had a positive impact on Hailey. She is happy, and it’s incredibly rewarding to see her flourishing in her new environment.
Can you give us an update on what your life looks like today, more than a year into your transition?
On a positive note, my children have successfully formed new friendships. My oldest daughter, despite being non-typical, is on the cheer team and is enthusiastic about trying out for other sports in the coming school year. My family was able to attend the annual kabuki gathering in San Antonio in Oct 2023, where we met and connected with many families impacted by kabuki syndrome. We are so grateful for the experience and Hailey was excited to meet others like her.
Unfortunately, this past school year has also presented significant challenges regarding my daughter’s academics. The school has not fulfilled its obligation to provide her with a Free Appropriate Public Education (FAPE) and has failed to implement her Individualized Education Program (IEP). I have been steadfast in advocating for her rights and negotiating with the school, relying on relevant laws and substantial evidence. I am determined to secure justice for my daughter.
What advice do you have for others who may (themselves and/or family members) have an invisible special need or different ability?
Here are some recommendations based on my experiences in relocating with my family and advocating for my daughter. If you or a family member have an invisible special need or different ability and are considering a move (or if you’re a counselor supporting a family through a move) here’s what you’ll need to consider as part of your pre-move planning:
- Contact Local Resources: Reach out to the Department of Special Education and Disability Services at your destination to understand their policies, procedures, and laws that may affect your family member.
- Evaluate Housing: Ensure that potential homes are equipped with necessary accommodations. Compare the cost of living in different neighborhoods to find the best fit for your family’s needs.
- Research Education Options: Research schools online and, if possible, visit them in person or schedule virtual meetings and tours. Discuss your expectations and inquire about their special education programs and curriculum. Ensure they are willing to accommodate your family member’s needs or can provide appropriate support.
- Collect Documentation: Request letters from teachers, therapists, and other professionals who work with you or your family member. These letters can help facilitate a smoother transition and provide insights into your family member’s needs.
- Manage Medical Needs: Prior to the move, schedule appointments with primary doctors or specialists. Ensure vaccinations and exams are up to date. Request medical records and refill prescriptions to have an ample supply for the transition period.
- Research Local Services: Use online resources to read reviews and find healthcare providers who specialize in your family member’s condition or are sensitive to disabilities. Schedule introductory appointments (“meet n’ greets”) with potential doctors, pharmacists, therapists, etc.
- Seek Support: Reach out to others who have gone through similar experiences, such as therapists or support groups. Your employer may also connect you with past assignees who can share their experiences and offer guidance.
- Self-Care: Remember to prioritize your own well-being during this transitional period. Taking care of yourself ensures you can effectively support your family member’s needs.
Moving with a family member who has special needs requires thorough preparation and advocacy. By proactively gathering information, connecting with local resources, and taking care of yourself (remember, you can’t pour from an empty cup!), you can help ensure a smoother and more supportive transition for your family.
Further Information
Within the last year, I assisted a co-worker’s sister in getting diagnosed after 19 years of being undiagnosed. I directed her parents to complete the Invitae counseling form and advised them to schedule a consultation with one of Invitae’s doctors to complete a full panel for syndrome(s). The test results confirmed a positive mutation for Wiedemann-Steiner syndrome. See the link below:
Invitae | A Genetic Information Company | Genetic Testing Made Simple
This website not only diagnoses mutations for syndromes, but also offers genetic testing for various other health conditions that an individual may be affected by or carry.
For more information on Kabuki Syndrome, check out these resources:
Annual Kabuki Gathering, San Antonio
Kabuki Syndrome Foundation: Driving Kabuki Syndrome Research
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