Those of us who are willing to embrace the worst-case scenario, and even the mere inevitability of death, will leave our children in a much better place. For parents of special needs children, the prospect of leaving them on their own is understandably overwhelming. They are often unable to live independently, and you must consider this when figuring out how life will look in the case of changing circumstances.
What Special Needs Parents Face
The Center for Parenting Education helps put into perspective the life of a special needs parent. The seemingly constant care that a special needs child requires is universally exhausting. Uncertainty, sadness, frustration, irritation, and even resentment are often unavoidable emotions for parents who care for their child day-in and day-out with no end in sight.
The Episcopal Center for Children is one source that offers advice for parents of special needs children. Joining a support group of parents in a similar situation to yours is one of the first steps in coping. The sense of honest communication that such support communities provide can be invaluable. Creating a diary or journal documenting your daily emotions and struggles can also be cathartic. In addition, finding a qualified caretaker to help share the load can allow you the personal time that is necessary to stay patient and emotionally-balanced.
Service dogs, if your child takes to them, can also help ease the burden of caretaking and entertaining. They may prove cathartic and a constant source of love and attention for a child who will likely have difficulty making friends.
Kids Healthalso recommends creating a list of needs that would help them as caregivers. Checking off this list can help ensure that the specter of caregiving does not become paralyzing. Also, be honest with others about what you need emotionally, and accept help in any form it may take.
Planning for the Future
There will come a time when a parent will be unable to care for their child. Death, senility, and unexpected physical and mental limitations are the most common reasons parents will cease being able to care for an adult child. It is reckless not to plan for these inevitable circumstances, as difficult as it is to even contemplate.
Fortunately, countless parents have dealt with these circumstances, and advice on how to deal is widely available. Consider the plan of action before a special needs child turns 22. This is the age at which the state will no longer provide for special needs education.
Because special needs children require a higher level of care, finding a guardian who is willing to take on the role of caretaker and trusting them with a child’s inheritance must be done thoughtfully. Free Advice Legal counsels that leaving the estate in the child’s name is actually a threat to their health. Some benefits cannot be received if a person has more than $2,000 to their name, so this must be considered when forming a will.
The University of Minnesota provides more valuable advice on how to plan for your special needs child’s future. At some point, talking to the child about life after the parents are gone or incapable of administering care will be helpful toward easing the reality when the inevitable occurs.
Nothing about special needs child raising is easy. The idea of life without parents around can be even more overwhelming than the caregiving itself. Still, decisions about how a special needs child or adult will live, with whom they will live, and how an inheritance will be handled must be made sooner than later. This will help instill a sense of security for concerned parents, and it will ensure that if unexpected circumstances arise, a special needs child is in good hands.
(Patrick Young writes from personal experience. He is disabled, lives in Los Angeles and is a CityWatch contributor.) Prepped for CityWatch by Linda Abrams.