Parenthood presents challenges for all families but the complexities of raising children with disabilities and those who are neurodivergent can include additional stressors. For instance, what happens when parents disagree about a child’s diagnosis, medical decisions, and services? How can parents deal with the financial burden that comes with the myriad of services the child needs?
Here are some challenges you may face parenting a child with a disability and a few suggestions on how to deal with those challenges.
When parents don’t agree:
The diagnosis process has different stages of acceptance, understanding, and grief. Parents are coping with their emotions, and their partners may feel differently. That can be incredibly upsetting, frustrating, and heartbreaking to navigate as a couple. There is so much mental and physical energy exerted on parenting. When a child has an exceptionality or disability that requires research, medical care, appointments, and services, there are additional stressors. Scheduling and attending appointments for the child can be physically, mentally, emotionally, and financially draining. Resentments and strain in the parents’ relationship can form when expectations of each person’s roles and responsibilities are not communicated and met.
A source of contention in a relationship can be parents disagreeing on medical decisions and services. Challenges include not agreeing on whether or not the child should take medication and what services to prioritize. An example would be one parent focusing on academic support such as tutoring while the other believes services such as occupational or speech therapy are what the child needs.
Having parents attend the school’s 504 or IEP meetings and medical appointments is important so they can discuss concerns, gather feedback, and make informed decisions. When When one parent attends the meetings and therapy sessions alone, they can often feel the weight of shouldering the responsibility and summarizing what happened in the appointments, and relaying medical terminology can be frustrating. If work or transportation barriers prevent a parent from attending, request if virtual meetings are an option.
There are situations where some parents and family members will not accept a child’s diagnosis; whether it be a perceived shame, cultural stereotypes, unconscious biases, and lack of understanding, education, and empathy, some people will not be able to support their child and their needs. While this can impact blood-relative relationships, do not underestimate the powerful bonds built by educators, therapists, and friends who support your child with care, compassion, and love.
How to cope:
- Counseling (couples or individuals)
- Support Groups (see November 2022 issue for ideas)
- Leaning on friends who have children with neurodiversity/disability
- Contacting nonprofits that specialize in the child’s disability
- Focus on one meeting, one medical appointment, and one therapy service at a time. Reshape your framework that these are individual steps and opportunities to move one step forward toward a bigger goal. Disability services and support will not be “fixed” in one appointment. It is a long journey that requires flexibility, patience, and adjustments. This is a marathon, not a sprint.
- As difficult as it is to practice, remember that self-care is not selfish. If a parent is exhausted, drained, and has unmet needs, taking care of children becomes incredibly difficult, sometimes debilitating. Some days making phone calls and researching a child’s diagnosis can feel too overwhelming; table those tasks for another day. Parents deserve to recharge and rest without guilt.
One appointment leads to another: Now what?
If newborns came home with an instruction manual, neurodivergent children and those with disabilities would have an encyclopedia collection. Researching complex medical diagnoses and finding providers and services feels like a labyrinth - going into one meeting or medical appointment anticipating an outcome. Still, when it leads in a different direction, parents can leave feeling dizzy and frustrated with confusion—one step forward and two steps back. Appointments require time, research, and money, which can be stressful and expensive.
The financial cost of a diagnosis and services
The American healthcare system does not serve and support people with disabilities and neurodivergence. Parents are forced to work within a complex system of health insurance coverage that is a headache. Some providers are strictly private pay and do not accept insurance. An insurance plan may not cover some services. This can feel especially exhausting and debilitating when so much time and effort was spent researching that service, getting hopes up that it could help, and then it not being covered or too expensive.
The reality is that even with health insurance, the copays and costs are incredibly expensive, and many people cannot afford to pay for these resources. It is almost impossible for those who do not have health insurance. Some state and federally-funded programs, like the San Andreas Regional Center and their vendors, like Stars Therapy Services, are available. These incredible resources could benefit your children; please contact them for assessments to see if your child qualifies.
What if I don’t like my doctor?
Last summer, my son and I had a horrific experience with a doctor where we didn’t feel supported and heard, and I left feeling guilty about taking my son to meet him. Finding a new provider can feel like a setback, and researching new providers and wait times often make people stay with doctors they don’t feel comfortable with out of necessity. Do not settle and compromise for medical providers and therapists who do not align with your values and support your family and child.
Sometimes it is difficult for parents to accept that the life they envisioned with their child will not be the reality. They may not be able to throw a football with their son or daughter, or their child may not attend a four-year university while other friends’ children are leaving for college. There can be a grieving process that can vary during different stages of the child’s life. But navigating this life together teaches parents that each child’s individuality is their strength. Every child deserves to be loved, celebrated, and embraced as their authentic self. Focus on those passions, foster them, and empower your child to embrace their enthusiasm.
Sabrina Hiltunen is a Career Development Instructor and works with college-aged and young adults with autism, ADHD, and other exceptionalities, coaching them on job and volunteer preparation, placement, and workplace expectations.