Editor’s Note: This post is written by a parent of a child with complex needs. She candidly shares her challenges, hopes, and hard-won lessons about advocating for her son and herself. Through her story, she offers encouragement and solidarity to other families navigating similar journeys, reminding us all that while the road can be demanding, support and community can help light the way.
Our world is different from yours. We walk among you and try to participate, but it takes so much more on our part. Our struggles are daily. Grief returns in cycles and sometimes feels overwhelming. Our pain runs deep, and we are forced to face a future of uncertainty and worry. The stress can be overwhelming at times. But just when it seems like you can’t go on, a moment of joy happens, and you find peace.
Unwavering Commitment
I have always said I will do as much as I can for as long as I can because the day I stop, so does the protection for my son. I don’t get days off. I don’t get to put my son’s disabilities on the backburner and put my needs first because there are too many battles to fight, too many lessons to learn, and too much advocating to do.
I have found my tribes and my allies. I have reinvented myself countless times along this journey. Sometimes I wonder: How many times do I have to start over? How long do I have to keep making sacrifices? When will I get my life back?
I’ve come to accept that life won’t return to how it was. Life has changed me—but for the better. My son has made me more tolerant, more forgiving, and more confident.
Finding Purpose in My Voice
Over the years, I’ve learned how to cope with my situation and utilize it to my advantage. I’ve made a career out of taking care of him, providing the support and assistance he needs, and advocating for changes where necessary. I am very good at what I do.
I was recently told, “If you don’t do this, who will?” Sometimes I feel like I’m the only one who speaks up, who advocates for change, who cares—but I know there are others in my same situation feeling the same way. I am proud to be a voice for them and for everyone who struggles to find their voice. I have found mine, and I am not afraid to use it.
Full Circle
When you look back on life, you wonder why things have happened the way they have. My experience on the debate team in junior high is really paying off. Writing for the school newspaper in high school and working on the yearbook staff have been put to good use. I’ve contributed to several newsletters, publications, blogs, annual reports, and even a few yearbooks. However, I still have not found a good use for Algebra.
Working for several demanding bosses in a corporate environment who expected perfection has taught me to read every line, check every document, and stay extremely organized. Participating in leadership programs in high school and earning my Girl Scout Silver Leadership Award laid the foundation for the community leader I am today.
I strive to learn from others, be an active part of my community, give back, and make the world a little better in some small way. I hope that my advocacy and assistance to others have made this bumpy road a little smoother for someone else.
The Reality of Parenting a Child with Complex Needs
Having a child with multiple disabilities is not what I imagined, but it has its silver linings. I do what I do because I must. I do what I do because it is right and just. My son deserves a good quality of life. This unexpected path has forced me to make choices and do things that no parent should ever have to do for their child. It has strengthened my marriage because we either do this together or apart. Apart is not an option.
Finding Support and Resources
While the emotional and physical toll of parenting a child with complex needs is undeniable, the journey becomes more manageable—and even hopeful—when you begin to discover the right supports and services.
Early intervention is the key. From the day he was born, my son has received outstanding medical care through a comprehensive team of providers in the Texas Children’s Hospital system. He has received care from some of the top doctors in the nation who collaborated with me and took a vested interest in seeing him not only become medically stable but exceed expectations. During our recent medical transition, this team remained strong and helped me create a new team in the world of adult medicine.
Upon starting Early Childhood Intervention (ECI) services, my son was enrolled in the local school district at eight months old. He had a TVI come to the house once a week for 45-minute sessions. She was not only instrumental in helping him navigate his world but also in helping me understand my new one. At ten months old, we began services with the Blind Children’s Program through our state’s Health and Human Services Commission (HHSC). We had some outstanding case managers who provided my son and me with learning and recreational opportunities, funding to attend state conferences, support to build a network, resources, and guidance to help me understand my role as my son’s advocate.
Throughout this entire journey, the Texas School for the Blind and Visually Impaired (TSBVI) has been a lifeline — my beacon in the dark, my source of knowledge, hope, and encouragement. From working with their outreach team, to becoming a certified family leader, to having my son attend summer programs, and now attending the school full time, TSBVI is a found family that has supported us in countless ways. They have given me opportunities to engage and collaborate with professionals, help create and grow programs at the school, and find my purpose by providing me with one — offering unlimited chances to grow as a leader. The staff and administration have given my son an education that meets him where he is and sets him up for a successful future. They are empowering both of us!
Take advantage of every opportunity that comes your way, even the ones that might seem out of reach when they first appear. You never know where you or your child will end up. Create a network of support by embracing those who come into your life, and make an effort to keep in contact with both professionals and newfound friends. Everyone is busy and may not always live nearby, but technology is a wonderful tool to help you stay connected. As people come and go on your journey, you will find both teachers and supporters. Learn from both, and embrace the challenges and obstacles, knowing that you are growing and gaining knowledge simultaneously.
Preparing for What Comes Next
Like any good parent, I do my best to set my son up for a successful future.
For me, his graduation next year will be bittersweet. We will be losing this support and much-needed respite. After graduation, my son will not go to college, get married, move out, or become independent. He will return home, and I will return to work full-time. When he is home, I can never fully switch off. I remain in a constant state of alertness—always waiting for the other shoe to drop, always preparing for the next battle, and always ready to come to his aid.
I will return to the car rider lane, dropping him off daily at a day program so he can have a meaningful and purposeful life.
The Future
While I have his immediate future mapped out, the rest is extremely difficult. Finding a place for him—a community free of abuse and neglect, where he can live a safe, joyful life—is daunting. The cost is significant. The stress is overwhelming.
Due to the immediate loss of my career at the time of his birth, my once prosperous income was gone—never to be reclaimed. I must rely on a waitlist 15–20 years long for services that may or may not be funded when they become available. It’s hard to plan for his future with so much uncertainty. Yet I go on, trying to remain positive that it will all work out.
I am someone who makes things happen. I’ve always made the square peg fit into the round hole. But his future planning is so complicated, with so many moving pieces and so few options.
Moving Forward, Together
This is where I stand: looking back on my life, learning from my mistakes, continuing to overcome a deck stacked against me, and moving forward by swimming upstream.
As my son transitions at each stage of his life, so do I. I’m meeting new allies, building new communities, creating new experiences, gaining more knowledge, and finding new family. It truly takes a village—one that gives you what you need when you need it most. One that understands you. One that you create through sheer willpower.
I know I will find his place, his family, and his future home. But in the meantime, we will continue down this path—learning, growing, and adapting to this ever-changing world and hoping that the uncertainties will lessen and the future will become clearer.
Resources for Your Journey
The journey is long and heavy, but parents of children with complex needs are not alone. Resources, communities, and tools are available to lighten the load. If you find yourself on a similar path, these supports may help you take the next step forward with greater confidence and connection.
- Join a Support Group: Find Help and Community.
- Gather information and tips on Supporting Learning and Development in Children Who Are Blind or Low Vision with Additional Disabilities.
- Establish a strong partnership between home and school:C hildren with Multiple Disabilities Need the Expanded Core Curriculum, Too!
- Plan for future considerations for your child with multiple disabilities.