Understanding your child’s disability
Accepting that your child has a disability is perhaps one of the most difficult things you’ll do as a parent. The range of emotions, including confusion, fear, and grief, can be overwhelming.
However, coming to terms with the reality of your child's condition is beneficial for many reasons. Most importantly, gaining a better understanding of your child's disability will allow you to best advocate for their needs.
- Educate yourself. Search reliable resources, such as medical journals, health organizations’ websites, and books written by experts about your child’s condition.
- Engage with your child. Spend time doing activities that your child loves so you can learn about their strengths and challenges.
- Gather information. Seek condition-specific information on your child’s disability, available services, and support resources.
- Network with other parents. Talk with other parents of children with special needs to share experiences, helpful resources, and parenting strategies.
- Stay updated. Treatments for health conditions are advancing quickly. Even if you feel hopeless, do not give up. Stay informed on the latest medical developments related to your child’s condition.
- Take advantage of support groups. Find a support group (either online or in-person) for parents of children with special needs.
Special challenges for LGBTQ parents
Health care imbalances affecting the LGBTQ community are well documented. These include discrimination and even refusal to provide health care. These factors can be especially traumatic for families already facing the stressors of raising a child with a disability.
Finding a health care provider
It’s important you’re comfortable with your child’s health care provider. This is true for all parents, but for LGBTQ parents, the process of selecting a doctor can be more complicated.
Sadly, not all health care professionals are willing to provide equitable care to LGBTQ families.
In a national survey by the Center for American Progress (CAP), 7% of respondents reported health care providers refusing to acknowledge their family, including a child or same-sex spouse or partner.
Fortunately, you can find an inclusive health care provider by:
- Doing your research. Look for health care providers who explicitly state that they are LGBTQ-friendly. Advocacy websites, social media, and patient reviews can offer valuable insights.
- Knowing your rights. Familiarize yourself with laws protecting against discrimination based on sexual orientation or gender identity. If you encounter any form of discrimination, consider reporting it to your local health department.
- Seeking recommendations. Connect with local LGBTQ organizations, online forums, or other LGBTQ families for provider suggestions.
- Trusting your instincts. Comfort and trust are essential in any doctor-patient relationship. Look elsewhere if you don't feel a provider has your family's best interest at heart.
Facing discrimination
If you experience discrimination in a health care setting, it is imperative that you take action. Some families may feel uncomfortable taking a stand or confronting someone in a medical setting.
However, without active resistance to discrimination, the LGBTQ community will continue to suffer from injustices in health care.
“Discrimination — and even the potential for discrimination — can deter LGBTQ people from seeking care in the first place.”
—Center for American Progress (CAP)
Thankfully, there are organizations committed to change. For example, Lambda Legal, the American Civil Liberties Union, and the National Center for Lesbian Rights all assist with LGBTQ legal issues.
- Document the incident. Keep detailed records of what happened, including dates, times, and locations. Make sure to make a note of which health care professionals were involved and what their actions and/or comments were.
- Report the incident. You can file a complaint with the Office for Civil Rights or your local health department.
- Contact advocacy groups. Groups such as the Human Rights Campaign or your local LGBTQ rights organization can help.
- Seek emotional support. Facing discrimination in a health care setting is traumatic. Seek help from groups that advocate for LGBTQ families, like Family Equality or local LGBTQ parenting groups.
- Find a new provider. While it may be tempting to stay with a health care provider that specializes in your child’s condition, the price your family pays may be too high: your provider should be respectful and use your preferred names and pronouns.
Remember, everyone deserves compassionate, respectful, and informed health care, regardless of their sexual orientation. Raising a child with special needs can be stressful enough. Don't settle for less than what your family deserves.
Adoption and fostering: Unknown family history
LGBTQ families who have adopted or are fostering often face frustrating challenges when trying to find the best care for their child.
In many cases, there may be unknowns regarding your child’s genetic background and early childhood information.
It can be especially difficult if your child experienced trauma before they came into your life.
“Adverse childhood experiences (ACEs) are traumatic experiences endured by children 0-18 years old that can negatively impact future health outcomes.”
If you are missing information about your adoptive child’s background, do not despair.
Here are some strategies to manage missing health information:
- Consider genetic testing. If your child’s pediatrician recommends it, genetic testing can provide insights and help answer questions about their health.
- Document your child’s early life. Piece together any information you can access in a chronological and detailed manner. While it may take time and patience, this can help doctors better understand your child's history and condition.
- Enlist the help of medical professionals. Pediatricians and specialists may be able to suggest specific evaluations and screenings to monitor your child’s development.
- Follow routine care recommendations. Make sure your child gets regular check-ups, therapy sessions, and any other support they need to address issues as soon as possible.
- Get information from the adoption agency. Confirm you’ve received all available information from the agency. They may have access to more details and specific resources that could help.
While it’s ideal to have a complete picture of your child’s past, especially when they have special needs, it is not always possible. Providing your child with a loving and stable environment can help bridge any gaps and ensure they feel supported.
Medical and therapeutic services for your child
As an LGBTQ family raising a child with special needs, you may wish to seek additional medical and emotional support. Consider including the following resources as part of your care team.
Pediatrician
You may wish to find an LGBTQ-friendly doctor for your child. They will be your first point of contact, so it is crucial that you trust them. While they may not have extensive experience in your child’s specific condition, they can help you put together the care team you need.
Specialists
Depending on your child's needs, you may require the services of medical specialists such as neurologists, speech therapists, occupational therapists, or physiotherapists. While you will want providers who respect and understand your family's dynamics, here is where you will want professionals who are experts in your child’s disability.
Mental health support
A child psychologist or therapist who specializes in disabilities can provide vital support to your child and family. Again, finding an LGBTQ-friendly provider can help tremendously, but you may wish to prioritize someone your child is most comfortable with, provided your entire family is treated with respect.
Special education services
Education plays a key role in your child’s development, so it is important to ensure they have access to necessary educational support. Both public and private schools offer specialized programs and resources for children with special needs.
Support groups
Whether you seek a support group for LGBTQ families or one for your child’s specific condition is a highly personal decision only you can make. While it may take some research and trial and error, support groups can be an invaluable way to get additional emotional support for your child.
Inclusive recreation programs
Adaptive and inclusive recreation programs promote socialization, skill development, and independence in children with disabilities. These programs may include aquatics, fitness, and art for children of all abilities. You can search online for a program in your area.
It’s essential to establish a network of inclusive, compassionate health professionals for your child. Building a comprehensive care team may seem daunting, but with the proper support, your family can navigate challenges together throughout your child’s life.
Financial assistance for parenting a child with disabilities
Financial planning is a key part of raising a child with special needs. This is because caring for a child with a disability can be over 10 times more expensive than caring for a child without one.
- ABLE accounts: These are tax-advantaged savings accounts for individuals with disabilities.
- Children’s Health Insurance Program (CHIP): Provides comprehensive health care, including routine check-ups, immunizations, and medical treatments.
- Medicaid: Health insurance for limited-income families, designed to help with medical expenses, housing, and assistive devices.
- Social Security Disability Income (SSDI): Offers monthly compensation for children with disabilities whose parents have contributed to Social Security.
- Special needs grants: Various organizations offer grants for families with children with disabilities. Unlike loans, grants usually do not need to be paid back. Examples include the United Healthcare Children's Foundation, and Autism Speaks.
- Supplemental Security Income (SSI): Provides monthly support to low-income families of children with disabilities.
- Temporary Assistance for Needy Families (TANF): Offers financial aid and other support services to low-income families.
The financial resources you can access depend on your family's financial situation. You may wish to contact a financial planner or attorney to help determine your eligibility for these and other programs.
Emotional and mental health resources for LGBTQ parents
Living with many challenges of raising a child with special needs can take an emotional toll on all families. Do not despair. Help is available for managing all aspects of emotional well-being.
- Crisis hotlines: In difficult moments, crisis hotlines like the National Suicide Prevention Lifeline or Crisis Text Line provide immediate, anonymous assistance.
- Family and friends: Don't underestimate the power of your personal support network. Communicate your feelings and needs to those you trust most.
- Mindfulness and self-care practices: Prioritize self-care. Mindfulness, meditation, exercise, or simply taking time for hobbies can significantly improve your mental health.
- Psychotherapy: Seek a therapist skilled in providing support to LGBTQ parents. They can provide valuable tools to manage stress, process emotions, and strengthen family bonds.
- Support groups: Join local or online groups that understand your unique experiences.
Remember, caring for your emotional and mental health is not a luxury; it's a necessity. You're not alone, and help is always available.
