Understanding the Financial Needs of a Special Needs Family (and how YOU can help!)

This is day 8 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, Katie from Wonderfully Made is guest posting about the financial needs of special needs families! 

When my son was diagnosed with autism, I was overcome with emotion. For months, we had been confused, exhausted, and despairing of our son’s struggles. Finally, his severe behaviors, perseveration, OCD, sleeplessness, challenges to communicate, and anxiety made sense. Finally, we had an answer. Finally, we could get him the help he needed. And for that, I felt a tremendous sense of relief.

Our son’s diagnosis opened doors that otherwise would have been closed to him and to our family, and we hit the ground sprinting to get him the services he needed, including weekly occupational therapy, speech therapy, social skills groups, floortime sessions, and more. Over the months and years, we saw him improve by leaps and bounds. We would never change his level of care. We would do it all again in a heartbeat.

With that said, the journey has not been easy, and one of the most difficult aspects our family and all families with special needs children must face is the financial impact of the care our children need and deserve. I am often asked why our financial needs are so great and here is my answer:

Imagine needing to take your child to the doctor every day for years. Imagine not only the co-pays for each appointment, but also the monthly prescriptions, the gas money needed to transport your family to and from each appointment, medical or therapeutic equipment your child needs to further his or her progress at home from those appointments, and the snacks and meals you would need to provide on the road each and every day.

Imagine balancing the needs of your other family members as well. In our family, we also have to juggle Crohn’s Disease, which lands me in the hospital at least once every year, severe food allergies, which have resulted in ambulance rides and hospital stays for both of our children, and a growing daughter who, though neurotypical, has needs that are equally as important as any member of our family.

Imagine needing to care not only for your bodies, but your mental and emotional health as well. Over the past few years, our family has required weekly individual therapy and marriage counseling sessions to learn strategies to function best as a family in the wake of needs that extend beyond what we could have anticipated or prepared for.

Imagine living hundreds of miles away from extended family and juggling all of your family’s needs and limitations on your own. Our family lives a thousand miles away from extended family. We must share a car because we cannot afford two, and therefore when there is an emergency must rely on ourselves and the kindness of others to help us get to the hospital or an emergency room. When we need childcare, we cannot hire the neighborhood babysitter, but instead must employ someone who is professionally trained to care for children with specific needs.

Imagine needing to pay more for rent and groceries in order to prevent further medical complications for your family members. Our family must pay more to live in newer, cleaner homes to avoid environmental triggers that make us ill, such as mold, pollen, and pet dander that often are present in older homes. We also must buy special (ie, expensive) foods that cater to all of our family members’ severe food allergies and sensitivities.

Imagine also having all of the bills and expenses a typical family has. We have to pay rent, utilities, cell phone bills, and offer our children opportunities to experience and enjoy the world around them. Special needs families have to pay to have their cars repaired and the oil changed, just like typical families. We have to pay taxes and for any emergencies that may arise, and they do regularly for special needs families, almost weekly for ours. And because we have so many weekly therapies and appointments (this summer we had up to sixteen each week) oftentimes only one spouse is able to work outside the home, and must bear the weight of being the sole provider.

It is a tremendous amount to carry, and on top of all we do each day to love and care for each family member in the way they need and deserve, the financial aspect can feel like scaling an insurmountable mountain.

But it doesn’t have to be this way! Friends, family members, and members of the community can help special needs families make the climb. Here are a few simple (and affordable!) ways you can help a special needs family financially:

• • Offer to pay for a babysitter of their choosing so they can go out for a date night. It can be so difficult for parents of children with special needs to make time for themselves, and even more challenging to afford it. A date night out is a treat and could truly be the difference between a marriage that is crumbling and a marriage that is thriving.

• • Give a grocery gift card. We all have to eat, but sometimes preparing food for families who have food allergies and sensitivities can be overwhelming for the preparer and stressful for the family. We are always having to ask dozens of questions or to offer a list a mile long of all the foods we can’t eat, which feels discouraging. It emphasizes the things we can’t have, rather than the things we can have. So, instead of trying to prepare a meal, offer a grocery store gift card to help a family buy what they need to nourish their family.

• • Offer to pay for a week of medical supplies or therapies. I promise, you will be humbled by the experience. Special needs families spend hundreds, if not thousands, of dollars each month to provide for their children. This helps you to feel what it is like to be in their financial shoes and gives a precious family some much-needed financial peace.

• • Know that we are weighed down by the financial burdens we bear, but it is difficult for us to talk about. Talking about money can be awkward for anyone, but for families with special needs it can make us feel guilty for talking about the financial aspect of what our children need. We will do whatever it takes to care for them, but also must face the financial reality of that care. So, rather than waiting to be asked if you can help a special needs family financially, simply offer. Start a dialogue by offering one of the three options above, but be open to their own ideas or needs. Each family is different and requires different care.

• • If you are not able to give financially, offer to go to the grocery store and pick up their groceries, mow their lawn, or take their child to a therapy. There are so many ways you can impact the life of a special needs family if you simply reach out and offer with love and compassion.

And remember, special needs families are people, too. Just like you, they want to be loved, understood, and cared for but oftentimes do not know how to ask or struggle to reach out. You can bridge the gap and bring peace to a family in need.

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Katie is the blessed wife of an Air Force veteran and mother of two (soon to be three!) precious children. Her oldest child, Jack, age 5, was diagnosed with autism in January 2013. Later that year, Katie felt the Lord calling her to share her family’s journey and she launched Wholehearted Mom, a blog dedicated to encouraging women along their journeys of faith, motherhood, marriage, and special needs. It is her deepest hope and prayer that what she shares at Wonderfully Made will encourage you to laugh, cry, learn, accept, and rejoice in what makes our children and each of us who we are—perfectly and wonderfully made by God.

You can also find Katie on Facebook and Instagram.