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  • Neil Mahoney

Respite Care for Special Needs Families: A Father’s Journey

Caring for a special needs child is difficult and challenging, and sometimes it’s too much to bear. I know because I’ve been on the brink of breaking down. I don’t like to admit it, but it’s true. As a parent of special needs twin boys, my wife and I have experienced joy, heartbreak, elation, and exhaustion. We’ve celebrated every triumph of our boys and cried at every setback. You want to be there for your children, but sometimes you have to step away and take a break for your own mental and physical health.


Your Support System


You need a strong support system, a network of family and friends that can help you emotionally and give you a break. As special needs parents, we don’t like to ask for help. We are the heroes and sheroes of our children, but it’s often just not sustainable. When my sons were younger, we had natural family support from grandparents, and when we moved away and had no family nearby, we were lucky enough to have made friends that would care for our boys occasionally for a few hours. We were eventually able to have our boys in state-run programs that provided respite care when they were ages 16 & 21.

The pandemic has been particularly hard because respite caregivers and even family and friends could not help. If you have a natural support system, tell them how much you appreciate their willingness to step up.


Resources


Finding respite care can be difficult and frustrating. You practically need to have written the Medicaid legislation in 1965 to understand what you are eligible for, and I won’t even mention Medicaid waiver waitlists. But there are resources for families with children when natural supports are unavailable. Kids on the Move is a non-profit offering respite care for families of little ones, but waitlists are long. The Family Support Center has three emergency nurseries in Utah that parents can utilize for respite breaks.


It’s important to know that you are not alone, even if it feels that way most of the time. Every time my wife and I have been on the edge, we seemed to find the support that helped us keep going. It’s crucial to be able to ask for as well and accept help. We often don’t want to ask, and sometimes we are hesitant to accept because of guilt. Know that people are genuine and they want to help. Accept their kindness.


We’re Here to Help


At ABW Wealth Advisors, we believe that wise stewardship of money leads to a better quality of life for your family. We want to improve your life by managing your finances related to your families’ goals and needs. We help special needs families and the broader disability community prosper.


If you’d like to know more about our services and how we can help you and your family deal with the challenges of having a disability, schedule a Break the Ice introductory call https://calendly.com/abwadvisors/intro-call

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