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7 Steps to Finding Support as a Rare Parent

Parenting a child with a rare disease or special needs can be an isolating experience due to the major life changes that occur with your new role as a caregiver. There’s often a loss of career, financial security, relationships—which can include friends, family, and even partners—and time for yourself.

“You live your life around a set of expectations, and then it takes a sharp shift. It feels like the floor has been dropped out, and you can’t find solid ground,” says Michele Thorne, parent of two autistic children, as well as co-founder of Care4theCaregivers. For example, a 2019 Canadian study revealed that many parents who take on the caregiving role become “therapists and caregivers to their medically fragile children at the cost of losing themselves as parents.”

Caregiving can be physically, mentally, and emotionally stressful and depleting. “What rare parents go through has a huge effect on the body and how we navigate the world,” says Thorne. Finding ways to support yourself and tap into community support can help ease these stresses and help you create a new normal that still affords you bright moments.

1. Get educated

Parents are often left to forge their own path, which can be daunting and can feel overwhelming. Understanding your child’s medical condition can help you feel more in control and make it easier to seek condition-specific support.

Alexandra Anderson
Credit: Nicole Anderson | Alexandra Anderson

“When you educate yourself, you can be empowered and not helpless,” says Nicole Almond Anderson, the mother of an 8-year-old daughter, Alexandra, who has Pitt-Hopkins syndrome. “When she was diagnosed, I learned as much as I could at the time. This helped me understand what was happening neurologically and developmentally to her. While it was daunting, it also prepared me for conversations with her doctors. Soon the line between ‘mom’ and ‘rare disease guru’ was blurred for the better.” If your child is undiagnosed, consider genetic testing—even if you’ve gone through testing before.

2. Ask for specific help

You may be reluctant to ask for help, but support from other people can make a big difference. “I went into my situation very hardheaded, thinking I could do it all myself,” says Thorne. “That was the wrong way to go about it. Ask for the specific help you need.”

Thorne uses her relationship with her mother as an example. “My mom would show up with documents about my kid’s condition,” she says. “I spoke up and said that what I really needed was help with laundry or making dinner. I needed things taken off my plate, and I wouldn’t have received that help if I hadn’t communicated it.”

Anderson receives help from a supportive employer. “My employer has worked with me and invested in me,” she said. “I give my all to them, as well as to my family. If those elements aren’t aligned, it would be so much harder.” Anderson is the executive director of communications at Arizona State University’s Thunderbird School of Global Management.

3. Explore online support groups

To build your network, reach out to support groups for families in similar situations. With rare diseases that only impact a few thousand children each year, these communities can be especially helpful.

You can find condition-specific communities online through sources such as social media platforms. “On the first day we received Alexandra’s diagnosis at 15 months, I found a Facebook group for parents of Pitt-Hopkins kids,” says Anderson. “We introduced ourselves, and they welcomed us with open arms. They held our hands even though they were hundreds or even thousands of miles away.” If your child’s disorder isn’t supported by a social media group, you can join a wider rare disease group.

4. Seek out local resources

Credit: Michelle Thorne

While finding groups specific to your child’s diagnosis is helpful, so too is extending a wider net to your local special-needs community. While you might feel isolated, you might be surprised to learn just how many parents do understand. “The disability community is the largest minority community in the world, yet we silo ourselves off,” said Thorne. “That can feel very isolating, when in fact, it’s not.”

You can share your stories, resources, and often connect in person, as well. This is something Anderson has tapped into regularly since beginning her journey. “There is a local yoga group of special-needs moms that I try to join when I can,” she says. “It is such a special place. Calming, safe and a sacred time away to just reset.”

There’s a great sense of camaraderie with other parents walking similar paths. Anderson depends on this new community of friends for practical tips and emotional support—they understand when and why she’s tired, for instance. “You don’t have to explain because they’re going through it, too,” she says. If your area doesn’t have a group, consider creating one yourself. To get started, you can begin with a Facebook group (see here for a how-to), or you can create a flyer and ask your child’s doctors and practitioners to hang it in their offices.

5. Collaborate with your child’s medical team

Educating yourself, advocating for your child, and working alongside healthcare providers to help them better understand your child’s disease and needs can ease stress and help you feel more in control. “A rare disease means your child might be the first your pediatrician has encountered with that condition,” said Tom Crawford, MD, director of the MDA Clinic for Neuromuscular Disorders at Johns Hopkins in Baltimore.

Crawford recommends showing up to medical appointments well-organized and prepared, so that no time is wasted. “Parents often drop an open shoebox on me, and we use up the time we have chasing things down,” he said. If you have trouble establishing the care your child needs, try finding another doctor. “You need people who are willing to learn about your child’s disease,” says Crawford.

6. Consider therapy

Your own medical providers can also provide you with much-needed support, including mental health resources. For example, if you’re struggling emotionally, talk to your healthcare provider about possible treatment. If your provider recommends therapy, look for a therapist who specializes in treating parents of children with special needs. Telehealth can make access to providers and appointments easier.

7. Celebrate the joyful moments

Managing care can feel overwhelming and daunting, sometimes leading you to overlook the bright spots in your child’s life. “Parents can feel beaten down and can miss the fun they are having with their kids,” Crawford said. “If you let the prognosis take away the fun, that’s a real tragedy. I ask parents to tell me something their child did last week or month that was too trivial to share with someone else. Something you found delightful that no one else might have noticed.”

Anderson calls these moments “inchstones” and makes sure to celebrate them. She has also managed to carve out vacation time. As Anderson and husband, Matt, round out 10 years of marriage, they’re planning a getaway. They will pack up Alexandra and her younger sibling and head to a tropical town with an accessible beach. They’ve made dining reservations at places that seem more accommodating than others and are renting an SUV instead of relying on ride-share, so they can safely transport the kids and Alexandra’s medical equipment. They will still celebrate their anniversary, just in their own redefined, way.

While rare parenting is never the path parents expect to walk, building support can make it easier to see and appreciate life’s joyful moments. Anderson says she fundamentally altered her way of approaching things in life and views Alexandra as a gift, one that makes every aspect of her life better. “My career is a privilege, and the easy part of my day is my job. Coming home is where the work starts—when we pivot to therapy and all the other minutiae of caretaking and keeping Alexandra healthy. Alexandra has allowed me to be a better human. Some people never get that opportunity.”


References and Further Reading

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  1. Parents think it’s hard when their special needs children are young, I know I did. But now that my daughter, who has a rare chromosomal anomaly, is 33 yrs old it’s even harder. I’ve worked all these years doing what the school and government systems told me to so that my daughter could develope a life of her own independent from us and with their supports. No one prepares you for when that all fails. After 10 years of her living out in a residential setting she is back home with us. That is because of the five agencys she was placed with over those years only one was phenomenal.
    But they got out of the business because they could no longer attract decent workers because the agencys reimbursement rate from the government didn’t allow them to pay decent wages . The next one was using the individuals food money for themselves. Two committed Medicaid fraud at over $10,000 each billing in my daughters name for residential services when she wasn’t in their care. One of those paid it back and the other has been turned into the Medicaid fraud division but they are so backed up they will never get to the case to investigate it. The last agency had a professional family teacher model that was a singular person my daughter lived with (instead rotating shifts) and she turned out to be an alcoholic. We moved her in with us three months ago because the agency has no one else to place her with. Mind you, there are many other agencies in the area but they are not up to par. Talk about isolating. I am about to be 61 years old. All my friends are enjoying retirement with activities and trips and so on. I and my husband are saddled with our daughter. We work through it together but it’s lonely. Many of these friends have known us and our daughter for years but no one is available to help. I can’t even relate to casual conversation with these people because I know of nothing to talk about but my daughter. I don’t have their experiences to relate to and they certainly don’t have mine. I have been very lonely, angry and sad. It was much easier when my daughter was younger. I know other mothers like me. No one talks about this part of being a special needs parent. I’ve never found a therapist who works specifically with special needs parents. Support groups can wear you out talking about the same thing over and over again. Besides, they are mostly full of young parents and I’ve already been through all that. I know all about my daughter’s medical issues and don’t need support there. Thought I was building all kinds of support for us over the years but it turns out not so much. Nobody talks about this part.

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