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Parent to Parent, Part 1: Addressing the Hardest Questions of All

Often, parents and/or caregivers of individuals with autism are told by friends and family how resilient we are. While others may see the daily struggles we face, they are probably not aware of the anxiety we may have when we think of the inevitable: the time when we will no longer be here to care for our loved one with a disability. We are told early on that this is a marathon, not a sprint.  We quickly find that the days are long but the years are short. We spend our time living in the moment as we love, teach, train, motivate, and cheer for the child whose challenges have caused us to become those resilient parents we are forced to be. We fiercely advocate and persevere through the early years, then the “school years,” and suddenly, we find ourselves in the marathon running alongside our young adult.  If we haven’t faced it before they are grown, we quickly realize that there is going to be an end to our role as caregivers. The thought of this may keep us awake at night.  Who will run alongside our child facing the twilight years of their own lives?  What will happen when we are gone?

How do we prepare for the inevitable?

We all face this reality in various ways, just as we all reacted differently to the initial diagnosis.  Some of us may start to plan early, while some face challenges one day at a time and put off the inevitable. Now we find ourselves in the middle of a pandemic, which all too cruelly reminds us of our mortality. Perhaps this pandemic has made some of us fully aware that this is our time to prepare, if we haven’t started that process. While we are planning for a day we hope is far in the future, I believe there are 3 things we can do as we approach these difficult questions:

  • Envision
  • Communicate
  • Make Practical Considerations


Envision: Lay Out a Map for the Best Life Possible

As caregivers, we can begin by envisioning our child’s life when we are gone. We can lay out the road map for the rest of the marathon because we know this individual better than anyone. Our loved ones should have as much self-determination as possible, so we can and should include them to the fullest extent possible as we begin to put our vision on paper. Who will become our child’s support team when we are gone? Where will our child live? What actual supports are available? What is needed for them to have their best life possible?


Communicate: Share the Plan with Key Players to Ensure a Successful Future

Next, we need to communicate our plan. One of the hardest things may be deciding how and/or when to approach the topic of death with our loved one. Individuals with autism understand abstract ideas such as aging and death in their own unique ways, or sometimes they may not be able to comprehend them fully at all. As caregivers who know what they grasp best, we can hopefully anticipate when and how they can best become prepared. Some of our loved ones may need social narratives, developmentally appropriate books, and/or social stories. Other may need conversation in concrete terms to assure that structured routines will continue. Some may need to explore the topic more while others may need to hold off on too much discussion. Some caregivers may want to record videos or audiotapes for their loved ones to have when they can no longer be together. Every family will face this in their own unique way, but hopefully we can thoughtfully consider our child’s needs for a future of security. Communication also involves making sure other support people are aware of what we envision. The vision should be shared with siblings, family, and friends, or at least be kept for the support team to easily access and review as needed at the appropriate time.


Make Practical Considerations: Identify Necessary Resources and Put them in Place

Planning for your child’s future when he/she has a developmental disability can look very different from a plan that is prepared for a neurotypical child. While government benefits such as Medicaid and Supplemental Security Income (SSI) may cover a portion of an individual’s basic needs, they are typically not enough. Other expenses such as food, housing, leisure activities, etc. will need to be considered. Because there are limitations on the assets an individual with a disability can hold before being disqualified for governmental benefits, it may be prudent to consider contacting an attorney or certified professional well-versed in special needs estate planning to consider the creation of a Special Needs Trust. Once you’ve got a vision, make sure it is documented through a Letter of Intent to communicate all instructions regarding your child’s future.

We discuss these practical considerations in detail in the second part of this blog post.


Reminder: Don’t Forget to Include and Prepare Your Child in Future Planning

Temple Grandin wrote “unfortunately, most people never observe the natural cycle of birth and death.” It’s often said that individuals with autism want to know what is coming next, how long it will last, and when it will be over.  Dialogues about life and death at some point may be some of the kindest things we can do for our child. When we discuss illness and death in ways our loved ones can understand, the process becomes something expected and understood, rather than something to be feared or taken unexpectedly.


Wanda Curley, an Autism Resource Specialist in the Triad office, can be reached at wcurley@autismsociety-nc.org.

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