Anyone who has ever been a parent of a child knows watching them grow up and guiding them through life toward adulthood can be both exuberant but demanding. Children rely so much on parents to help nurture them, to provide adequate shelter, and to ensure that they learn and mature and meet many of the milestones humans experience throughout their lifetime.
Parenting a child with a disability comes with its own set of challenges that often requires a unique approach to parenting and raising your child. While a child with a disability requires distinctive medical care and treatments that commonly places a higher burden on parents to secure that care, there is also something special about the opportunity to raise a child with a disability.
With the right knowledge and support, parenting a child with a disability can be a truly rewarding and enriching experience that far outweighs the struggles.
A Positive Attitude
Children with disabilities have a right to live and exist in an inclusive society. Just as all children are remarkable in their own way, children with disabilities are equally exceptional and have a wide range of life experiences that are specific to them. Unfortunately, children with disabilities still remain one of the most marginalized and discriminated against demographics in our society.
When it comes to a child with a disability, it is important to remember not to treat them in a way that makes feel differently just as you would treat any other child with their own expectations and imperfections. Kristen Thomas of Salt Lake City, Utah, a licensed Clinical Mental Health Counselor at Playful Minds, gently reminds parents “not to allow the disability to define your child” while you should also “be accepting of limits that your child could have as a result of their disability.”
Going to school is a necessary part of any child’s upbringing and should be a collaborative partnership between parents and teachers. The Pew Research Center estimates that public schools in the United States help educate approximately 7 million children with disabilities. However, school districts often struggle to hire much needed special education professionals, which places an undue burden on school systems to provide the necessary services that children with disabilities require. It is an unfortunate reality that our schools are sorely lacking in all areas, especially for children with special needs.
As a parent of a child with a disability, it is crucial to collaborate with the school as much as you can and to advocate on behalf of your child. Contact school board and government leaders to make sure your voice is heard and that schools are adequately funded, provide training and equipment, and are able to hire enough teachers and support staff as needed.
Finding Support
Parents of children with disabilities often face loneliness and stress. It is important to also take care of yourself just as much as you devote the time to caring for your child to avoid burnout and isolation. Jessica Plonchak, Executive Director of Choice Point Health at ChoicePoint, asserts “finding support early, whether that means going for therapies, working with school systems to create customized education plans, or connecting with local advocacy groups” is key to succesfull parenting.
If you do not have immediate family to rely on, try to connect with local groups or communities and meet other parents who have children with a disability that is similar to your own. You can also seek out professionals and organizations that can help you with your concerns and needs. One example is the Center for Parent Information and Resources that provides a central hub of information.
Laura Summerhill, a Houston-based psychotherapist and mom of a child with a limb difference says that, “it’s been vital to find community for our daughter.” Additionally, Summerhill suggests finding a camp for your child, like Camp No Limits, as a great opportunity for them to “meet peers with similar experiences.”
Acceptance and Giving Your Child Agency
Forty-five-year-old Todd Hagopian of Ohio and author of the soon-to-be published book, The Unfair Advantage, shares that his nine-year-old son, Liam, faces a difficult road ahead. Hagopian’s son is diagnosed with hypotonic cerebral palsy and retinitis pigmentosa and most likely will may spend life in a wheelchair and become blind later in his life. While Hagopian says the “challenges are immense” he appreciates seeing his son’s happiness and resilience which “has been a humbling and an inspirational experience” for him and his wife, Andrea.
Furthermore, Laura Summerhill’s therapist background also comes in handy her own parenting approaches. Summerhill says that it is “important for parents to take time to educate themselves about their child’s differences, adaptive tools, and disability rights, all of which models curiosity and self-advocacy for the child.”
There are some things you can do as a parent when it comes to addressing your child’s disability:
• Embracing your child’s curiosity — when kids ask questions, don’t shy away from them
• Honesty and directness — if a child is confused or doesn’t understand, help them learn
• Be an example — as a parent and an adult, you are the first and best role model for your child
• Learn and facilitate — engage in ongoing discussions and learning opportunities with your child
Financial Burdens
One of the biggest factors that parents face when providing specialized care for their children with special needs is the financial responsibilities. Researchers found that health care costs create hardships that often result in delayed or sacrificed medical care for children with special needs. One of the primary issues with health care costs is insurance, which is typically inadequate for children with disabilities who require more extensive care.
Andrea Hagopian, who is the primary caretaker of their son, expresses dismay when dealing with insurance, saying it “has been one of the most frustrating and infuriating parts of this journey.” In essence, Andrea feels the weight of the pressure, which forces her as a parent to be “both a caregiver and a lawyer just to secure basic services.”
The rising costs of health care in the United States remains one of the most complex issues that affects millions of Americans who struggle to obtain vital treatment. But there may be hopeful options available for families who are seeking financial help with coverage for their child. The Special Needs Alliance provides an excellent list of government programs that are available for children with disabilities.
Other options include nonprofit organizations, like the Joshua Hard Shane Foundation, which provides assistance directly to those needing help. Another organization is Autism Speaks, which offers grants to help provide relief for the care of children with autism.
Societal Pressures
Parents are sometimes viewed in a negative light when raising children who have special needs and disabilities. People do not always understand parent’s lived experiences with parenting a child with disabilities, which can be stressful emotionally, physically, and mentally, and may lead to feelings of hopelessness. Just as children with disabilities remain a marginalized demographic, the stigmas remain regarding their place and ability to function in society.
It is important to remember that you as the parent know and understand what your child needs. You are your child’s best advocate. Here are some tips for positive advocacy:
• Remain firm but optimistic
• Avoid overburdening your child
• Research and learn and have realistic expectations
• Document, organize, and keep track of all records
• Keep open lines of communication
• Know when and where to ask for help
While it is easy to let others influence your parenting decisions, you can be prepared for the tough questions and ready to help others understand better. Andrea Hagopian advises that you can “choose whether to educate, redirect, or simply protect” your child from unwelcome inquiries and comments. Though it may be painful, you alsohave the opportunity to create a positive situation from it while safeguarding your child as well.
Legal and Future Concerns
Sometimes parents worry about what will happen to their child if they outlive the parent. Drew Ann Long, Founder of Caroline’s Cause, offers some practical advice when thinking about the future. A special needs trust may be a helpful and necessary resource in the event that your child outlives you.
Setting up a special needs trust will require an attorney and the Special Needs Alliance explains simply that a special needs trust “will preserve the beneficiary’s (your child) eligibility for needs-based government benefits such as Medicaid and Supplemental Security Income (SSI).” Long says having this in place for her daughter was a “peace of mind knowing Caroline will be taken care of.”
Long also recommends applying for Social Security Income (SSI) for your child. As Long explains, this is a “federally funded program that allows your adult child at the age of 18 to receive a monthly check.” In addition, Long highly suggests applying for Medicaid early since many sates have a waiting list. Medicaid will help provide much needed financial assistance to pay for ongoing medical care.
Here are links for more information regarding Social Security Income benefits (SSI) and Medicaid for children and adults with disabilities.
Connecting with Others
No parent should ever feel they are alone in the care and well-being of their child with disabilities. We encourage you to make every effort to connect with other parents for emotional and mental support.
Below are some organizations and resources to connect with parents across the US and find helpful information.
Family Voices — a network of family-led organizations in the US that offer health care resources, programs, and toolkits for parents of children and youth with special needs and disabilities
Parent to Parent USA — matches and connects parents with other parents who have children the same disabilities and conditions
HeadStart — helps support children from birth to age 5 with development and learning and you find local programs near you
Exceptional Parent Magazine — provides excellent articles regarding various topics related to children with disabilities
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Additional Information
The content provided in this article is for informational purposes only and is not intended as a substitute for legal, medical, or other professional advice. While we strive to provide accurate and up-to-date resources, some information may become outdated or incomplete. Always consult with your provider about personal medical concerns.
