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 still ensure that everyone you love feels valued as well.
“As a mom of a child with severe cerebral palsy for 19 years, I know firsthand the difficulty in trying to balance family life for my entire family, including my other three children,” said Kelly Piacenti, head of MassMutual SpecialCare, which advocates for special needs families. “Family balance is being able to provide for each family member’s different needs and having open discussions to include everyone in the planning process.”
Piacenti, who’s second youngest child out of four children developed severe cerebral palsy due to birthing complications, shares her knowledge and insight to act as a mentor and resource for families facing similar challenges. MassMutual’s SpecialCare program, which was developed nearly 20 years ago, helps educate families and caregivers of people with special needs about the importance and steps in creating a future plan to help provide a secure financial future for the dependent, as well as their family.
“It’s important to involve family members and the dependent with special needs, if possible, in the planning of future roles and expectations,” she said. “Families should understand that not all siblings or family members may want to take on the role as future caregiver, which is why it’s critical to address considerations and have conversations early.”
A 2016 study by pediatricians at Boston Children’s Hospital found that, on average, kids with special needs received 5.1 hours of medical care from family members weekly, a figure that grows to 11.2 hours per week for those with intellectual disability and 14.4 hours for those with cerebral palsy. That estimate does not include the time families spend helping with daily activities like eating, bathing and dressing.1
But parents need not do it alone. By nurturing their other children, and setting time aside for them too, they may find that everyone in the house is more willing to pitch in and help.
With extra support from the family unit, parents may experience a sense of relief and feel less burdened, which in turn gives them more time to spend with other family members, increasing time available for family fun.
There may be bumps along the way
This may sound easier said than done. Younger siblings, in particular, may harbor resentment over how much time mom and dad spend with their special needs brother or sister. But as they mature, siblings often assume the role of protector and advocate of their disabled loved one. It just takes time.
Is balance really attainable?
Making a conscious effort to focus on each family member’s interests and needs is possible. Consider the following ideas to get started in your own family:
- Communicate openly and often – Initiate topics of conversation that help you understand one another better. Share your feelings about many aspects of your lives, but especially how you’re dealing with life as a family with special needs. Try to focus on the positive, but discuss the difficulties, too, to help resolve those feelings and issues.
- Take a sincere interest in each other’s day – Share what’s happened in your day, and if others aren't sharing, ask. Although it can be difficult in hectic lives where activities overlap, make the effort to attend games, dance or music recitals, school plays and other events together in support of one another. Celebrate achievements, big or small. And when someone’s had a bad day, help make it better. Acknowledge, talk it out and give extra love when it’s needed.
- Share burdens and blessings – Talk about what makes you happy, and what doesn't, especially how living in a family with special needs makes you feel. Recognize that while you likely have more responsibilities and less independence than other families, there are certain benefits, too. Siblings may not realize it until they’re grown, but they’ll learn to see the world with more compassion, understanding and determination. Being open now about burdens and blessings may help them see that sooner.
- Acknowledge that everyone’s stressed – 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. It’s not the issue — it’s how the issue makes a person feel.
- Make a conscious effort for fun family activities – 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 be sure to try to reserve some individual time too. As guilty as you may feel for doing so, know that a little “me time” can do everyone some good to rejuvenate.
We all need somebody to lean on
Things happen; life happens. Sometimes you feel isolated, or things aren't working despite your best efforts. Sometimes you need reassurance or guidance from others who are in similar situations. Reach out to others. Search for blogs by parents who are trying to find family balance, or for other helpful resources for families with special needs.
Finding balance financially
Creating a financial strategy can help resolve some family stress and burdens by assuring everyone 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).
What is it your family needs or wants? Whatever your priorities, dreams or goals are, a financial professional with experience serving the special needs community can work with your team of advisors to answer your questions and help you strategize.2 And with one less concern vying for your attention, you may be able to refocus energy on the family time and strike the balance you’re looking for.
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