Juggling a family’s busy schedule can be challenging at times, but it’s harder still when your household includes a person with special needs. Indeed, the care and coordination they require may make it difficult to devote an equal amount of time to everyone else.
By shifting the focus to quality versus quantity, however, you can help ensure that everyone you love feels valued.
“You have to take time for all your kids,” said Kelly Piacenti, head of MassMutual’s SpecialCare program, which helps educate families and caregivers about the importance of creating a financial plan for their dependent with special needs. She is also the parent of four children, including a son who had severe cerebral palsy due to birthing complications. “You can’t get to a place where you are only taking care of your child with special needs.”
Parents in the trenches shared some insights on ways to help your family with special needs find balance. They suggest you:
- Prioritize fun.
- Let your children lead.
- Keep communication channels open.
- Use respite services to recharge.
- Plan financially.
Families with a child with physical, mental, or emotional challenges are no different than any other family. To strengthen connections, they need moments together to build treasured memories and to celebrate each other’s wins.
The activities you choose may need to be modified to accommodate your child with special needs, but even a family picnic in the park, a visit to the local farm, or showing up to cheer each other on at sports events can do much to boost morale.
“We always incorporated our other three children in everything we did and in every part of Nick’s care,” said Piacenti, referring to her son. “If we took a vacation, we planned it somewhere where it maybe wasn’t the place that everyone wanted to go, but it was somewhere that everyone could go. We couldn’t take the kind of trips that other families were taking, but we could go on cruises because they are very special-needs accessible.”
Given the time constraints in your home, however, it may make sense to encourage one another to be selective with personal activities. It can help reduce stress caused by overbooked schedules and enable more time for family activities. Plan worthwhile activities that include all members of the family, but try to reserve some alone time too. As guilty as you may feel for doing so, know that a little “me time” can do everyone some good.
Let your children lead
Parents should also create opportunities for their other children to build a relationship with their brother or sister with special needs in whatever capacity they choose. That may mean taking their sibling to the ice cream shop or doing a puzzle or art project together. As they get older, it could also mean attending therapy sessions with their sibling or stepping in to provide an hour or two of care on their own terms.
Piacenti cautions parents not to put too much of the caregiving responsibility on their other children too soon.
“We see a lot of siblings who want nothing to do with future caregiving, and sometimes that’s because they have been utilized as caregivers their whole lives,” said Piacenti, noting she did not experience that in her own home. “I told my other children that I would like for them to be involved in their brother’s life, but that did not mean they needed to be his caretaker.” (Related: Living with special needs: The sibling perspective)
By keeping the focus on fun, wherever possible, you can help inspire a family culture that is rooted in mutual support.
Keep communication channels open
Having a loved one in your family with special needs can be a blessing. Parents often describe the positive effects it has on their other children, including greater maturity, empathy, and patience.
But it can also demand a lot from the whole clan. Your children who do not have special needs may develop feelings of resentment during childhood because their parents spend more time with their sibling with a disability. And as they mature, they may feel pressure to be the “perfect child” to help lighten their parents' load.
Piacenti said that all family members in your home should be encouraged to express their feelings about the blessings and burdens they experience without judgment.
Initiate topics of conversation that help you understand one another better. Share your feelings about how you’re dealing with life as a family with special needs. And try to focus on the positive, but discuss the difficulties too.
At the dinner table, discuss what’s happened in your day, and if others aren't sharing, ask. And when someone’s had a bad day, help make it better. Acknowledge it, talk it out, and give extra love when it’s needed.
Lastly, recognize that children’s stresses are no less weighty from their point of view. The test in school, the argument with a friend, or the wish for an item too expensive to buy may not equate with your concern about a new medicine or therapy for your loved one with a special need, but in their minds, it does.
Find time for you
Another key to finding balance is to know your limits.
“Sometimes, it’s about figuring out what you can and can’t take on,” said Piacenti, reassuring family caregivers that it’s OK to admit that you need a break, or to recruit friends and relatives for part-time help.
Being a full-time caregiver can be draining emotionally and physically. The latest research reveals that the roughly 17 million family caregivers of children with disabilities in the U.S. are more likely to experience chronic stress and poor physical health than non-caregivers, in part because their own health and well-being becomes a low priority.1 (Related: The link between financial stress and mental health)
“Chronic stress related to the daily, long-term challenges faced by family caregivers of children with developmental disabilities has been linked to increased risk of heart disease, cancer, gastrointestinal disorders, high blood pressure, overweight/obesity, asthma, and reduced immune functioning,” the report found.
Nonprofit groups that cater to a specific disability, such as Autism Speaks or the National Down Syndrome Society, are excellent resources for families, said Robert Touzeau, a MassMutual financial professional and special care planner in Center Valley, Pennsylvania, who has four children, including a 21-year-old son with Down syndrome.
Many provide respite services through local chapters where volunteers come to your home to have dinner with your child with special needs or watch a movie with them while you get time to yourself — free of charge, he said. They also host events and activities for children and adults with disabilities, such as bingo nights or outings around town, so caregivers get a break and their child with a disability can cultivate a circle of friends.
Don’t be a hero.
“When my daughter was born and diagnosed with a rare disease, my husband and I tried to divide and conquer,” said Mary McDirmid, a special-needs financial professional with the Special Abilities Network in Spokane, Washington. “I was the point person for my daughter, and my husband spent most of his time with my older child. I was a full-time caregiver. I wasn’t a parent.”
That’s not sustainable. With the benefit of hindsight and as her daughter’s health has improved, McDirmid said her goal in helping other parents with a child with special needs is to help them break the cycle of caregiving full time and to step into the parent role, if only for an hour a day.
“Maybe you can switch with your spouse, or get respite help through public programs,” she said. “Now I get to be the parent sometimes, too, which also changes my relationship with my husband. I get to put him and myself on the scale of things that are important.”
Find a financial balance
For families with a special-needs child, the importance of careful planning cannot be overstated.
In many cases, that begins with the legal process of securing government benefits, including Medicaid and Supplemental Security Income (SSI). It may also involve a special-needs trust, letter of intent, and essential estate planning documents to be sure your loved one is provided for even after you are gone. (Learn more: Financial advice for special-needs families)
A financial professional who understands the unique concerns of families with a special-needs loved one and can offer guidance on the ever-changing legal landscape of public benefits can be an essential partner in the process.
- The Achieving a Better Life Experience Act (ABLE Act) offers a new tax-advantaged way to save funds for disability-related expenses without jeopardizing eligibility for SSI and other public benefits. (Learn more: ABLE accounts: Tax-favored savings for disability expenses)
- The SECURE Act created a new class of beneficiaries known as an “eligible designated beneficiary,” which allows individuals with a disability to continue to receive payouts from a traditional IRA over their lifetime without causing the loss of needs-based benefits.
Touzeau notes that once your child with special needs turns 18, your financial plan may require an overhaul.
Your child may still require your care, but they are now an adult in the eyes of the state and their eligibility for need-based benefits will be based on their income and assets, not yours. As such, your child may qualify for SSI and the Medicaid waiver program for the first time, which helps to cover the cost of home- and community-based services.
On the other hand, your ability to maintain your household income may also shift.
“Our son Adam is 21 now so he has aged out of the public school system and that’s been one of our biggest challenges,” said Touzeau, noting his wife was a school nurse, but has had to scale back to part-time hours since their son is now at home all day. “When he was in school, he was gone all day and my wife and I could both work full time.”
Research by the Northwestern University Feinberg School of Medicine in Chicago found that families of children with special needs lose an average of $18,000 a year in household income as many are forced to reduce their work schedule or leave their job to be a caregiver.2
Creating a financial strategy can help resolve some family stress and burdens by assuring everyone that their needs are being considered: siblings’ future college expenses, parents’ retirement, legacies for all children, lifetime financial support for your child with special needs, and maybe even a plan to enable parents to work fewer hours or quit work entirely (therefore, providing more family time).
Families with a special-needs child face challenges, but many blessings too. By finding ways to restore balance in your home, in ways both big and small, you can help ensure that you have energy available to be present for everyone in your household — including yourself.
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