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.
“I talk to clients all the time and their biggest concern is always how they can be fair to all their children,” said Mary Anne Ehlert, a financial advisor in Linconshire, Illinois, who advocates for special needs families. “Being able to spend an equal amount of time with each one is probably not a reasonable expectation when you have a special needs child and, ultimately, that’s not something you should put on yourself.”
Ehlert, who grew up with a severely disabled sister, has a disabled child of her own and cared for a parent with cognitive decline, should know.
“You can still love all your children equally, and provide for their needs, without spending equal time with them,” she said. “That’s parenting. All kids are different. Some are more athletic. Some are smarter. And some need more attention.”
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 advisor 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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1 Boston Children’s Hospital, “Family-provided Health Care for Children with Special Health Care Needs” 2016
2 No one professional can provide everything a family needs. An integrated team comprised of an attorney, a CPA, and others, such as social workers and caregivers, or other financial professional who specializes in working with special needs, all working together is the best way to serve the client. We recommend you choose to work with professionals who are qualified, experienced, and involved in the area of special needs.