5 Steps We're Taking to Prepare for the Future of Our Disabled Child

“Mama, when I grow up I want to be an astronaut and see the stars.”

“Mama, when I grow up, I want to be a doctor.”

As always, I say, “Yes, sweetie, that’s a great idea.” The truth is much more complicated — we don’t know what adulthood will be like for our child.

There is an unsaid knowing that we will be caring for our medically complex and intellectually disabled daughter in some form for the rest of our lives. What that will look like over time is uncertain at this time. There is both sweetness and terror in that statement. We know her implicitly; we can guess her needs without words; we know exactly who to call and how to handle any medical needs that arise. No one will ever be able to care for her like us. Nevertheless, we will not live forever.

One thing remains, every day is one day closer to the future and adulthood. This reality is even felt by our 7-year-old, “I’m way younger than you and daddy. That means you will die way before me, and there will be no one to drive sister around. Will I have to drive her around to all her appointments and everywhere?” he asked one day. “Buddy, that is a long way off, and we will always make sure both you and your sister are taken care of even if we are not here. It will always be your choice if and how you help your sister,” I replied.

I meant that wholeheartedly, yet daily life is so all-consuming we rarely have time to plan what will come next week, nevermind years from now. We have named guardians for our children in our will, but do not have an actual safety net of long term measures. It is difficult to look to the future when the present is so all-consuming. Nevertheless, my mind drifts there when I help her with everyday tasks. How can I help her learn to become independent and take care of her personal needs? Read fluently enough to understand written directions? Teach her money so she can make everyday transactions? Learn to use a phone?

The list seems never ending. The truth is, we cannot teach our daughter all these things on our own. We cannot plan for the future if we are drowning in the present. And we, as a family, cannot progress in the present if we are fearful of the future. In the famous words of Hagrid in J.K. Rowling’s “Harry Potter” series, “What’s comin’ will come, an’ we’ll meet it when it does.”

Yet there are ways we can prepare now to achieve success better when the time comes:

1. Utilize the help available in the present to prepare for the future.

The saying goes, “it takes a village to raise a child.” It takes a village of experts to help raise our daughter. She is young and capable; though it does require the help of experts to teach her the necessary skills for successful independent daily living. Optimizing the support we receive now increases the likelihood of future success. Applied behavioral analysis (ABA) can help explicitly teach her complicated activities by breaking down tasks and reinforcing success. Physical therapy, occupational therapy and speech therapy all augment and increase her abilities to meet the increasing responsibilities of childhood through adulthood.

2.  Hold those charged with teaching her accountable.

Even when we use the resources available, there are times when those charged with helping her on her way to independence fall short. School is vital to her success and often the most challenging area to get her what she needs. Teachers are best equipped to help my daughter learn complex tasks such as reading, writing and math. Laws are guiding the education of those with disabilities, the Individuals with Disabilities in Education Act (IDEA), section 504 of the Rehabilitation Act of 1973, and the Americans with Disabilities Act (ADA) ensure she is given what she needs to learn and progress. We must hold the school to the task and make sure they adhere to their obligations to her based upon said laws.

3.  Maximize her chances of independence with follow-through.

There are times when it is so much easier to do something for your child rather than allowing them to struggle through the task. This is especially true for children with disabilities. The time and dedication involved in allowing my daughter to try, even if it will end in her needing my assistance, can be overwhelming. It is much easier to dress her than to watch her struggle with dressing and use all the techniques taught to us by her ABA therapist, occupational therapist and physical therapist. While easier in the short term, it hampers her in the long run.

4.  Have the hard conversations.

“What is comin’ will come,” and we must prepare for it. The unsaid always seems more daunting than that which is brought to light and explored. The practical is only half of what must be worked through for the future; the remainder is the feelings that come along with that. If emotions are not explored now, they will get in the way of any practical plans we make. We cannot imagine what it will feel like for our daughter to be independent or require care from others if we do not discuss it.

5.  Start preparations now by allowing others to help care for her.

We will always be the best caregivers for our daughter. Even so, a future without us is inevitable. The more practices both we and she have with others caring for her, the better we all will fair in the long run. It helps build our daughter’s flexibility and independence to allow others to step in for us. It also helps our wear with all to have a break in caretaking.

The more we work on actionable steps in the present, the better the future for our entire family.