Adults with Special Needs

Adults with Special Needs: Caring that Never Ends

Betty Piephoff will need to care for her adult daughter with special needs for the rest of her life. Her challenge, among others, is ensuring that both mother and daughter thrive. This is her story...


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Accepting that You will Pre-Decease your Special Needs Child

Like snowflakes, no two children are the same, nor do they have the same needs. As parents, we spend a lifetime – our children’s lifetime – identifying and anticipating a child’s needs and meeting them as best we can.

When a child is identified with “special” needs, that effort becomes more complicated. Not only must we attain a certain medical expertise in order to identify what is required to meet the needs of our child, but then, we have to figure out how to do it, regardless of how extraordinary those needs may be.

Because this is our child, there’s nothing we wouldn’t do to make life work for him/her.

So, in addition to managing the daily grind, we end up with sleepless nights of worry and wonder. Nagging us at 2 a.m. are two fears that seem to run in tandem, and to some degree of contradiction, all at the same time:

•“What if my child never becomes independent?”

•“What if I’m not here to support my child?”

There are logistical answers to these questions, of course. We can plan, and put systems into place to handle the operational concerns implicit in those late night ponderings. These answers lie in the realm of accountants, executors and lawyers. They are something you can Google and develop solutions.

But the fear behind the logistics is what really keeps us up at night. For the only thing worse than contemplating our children pre-deceasing us is the likelihood that we will pre-decease our children. For parents of special needs kids, THAT prospect is terrifying.

By the time we’re awake and wondering, we’ve generally developed default coping strategies. We’ve scripted messages for ourselves and we use them to keep us going. Whether we place our trust in God, or family, the “system,” or some combination, we create a world view that helps us cope.

Our challenge is to use those scripts to help us process that most complicated parental dilemma, the ultimate parenting Catch-22 – how can I care for my child if I’m not here?

There are two steps to help us prepare emotionally to leave our children in the world without us, to help us navigate our fear. The first is to prepare our children. The second is to practice radical acceptance.

Preparing our children is the simpler of the two, because that is the job of parenting – teaching our children to take on increasingly more responsibility for themselves, at whatever level is possible for them. We spend their lives encouraging them to do more for themselves. So while there are some specific conversations that we will want to have, preparing our children is part of the natural course of things.

It’s never too early (within reason, of course) to have “big picture” conversations with our children that prepare them for life without us. We can do this matter-of-factly, without adding our fear to their world view. It is also a great idea to create an “Ethical Will,” a document that offers your child philosophical guidance, a clearly articulated vision of what is important to you, what values you hold dear, and what you want for your child. This document becomes a guide for your child, and for the adults who will assume responsibility in your stead should you die before your child reaches maturity.

Practicing Radical Acceptance is perhaps the most difficult challenge a parent of a special needs child can take on – and arguably the most important. This involves letting go of fighting and accepting things as they are.

In many ways, it seems like I’m suggesting yet another parenting Catch-22. After all, we spend our lives fighting for our kids, advocating for them, enabling them to live life on their terms. How can I suggest that we need to accept?

But as the Serenity Prayer teaches us, there is grace in acceptance. No amount of worry, or stress, or fighting the system will change the reality that we are likely to die before our children. There is no bargain we can strike, no negotiation that will change that reality. Fighting it will add stress – and potentially accelerate the process. Acceptance will bring peace – and potentially enhance your time together.

At the end of the day, we cannot actually control what happens in our lives, or after our death. The only thing we can control is how we respond to whatever happens. This is where Radical Acceptance can be so powerful. This is where we can find peace amidst the fear.

Because the fears are real, and they aren’t going to just disappear. We have to train them, guide them, re-direct them and replace them with something that we can believe in. We can look to our own scripts for guidance.

Whatever your coping strategy is -- trust in God, or family, the “system,” or some combination – let it lead you to engage your children in the practice of radical acceptance. Just as that strategy has helped you cope with living with special needs children, it can support you as you begin to face the prospect of dying with special needs children.

Elaine Taylor-Klaus coaches parents from around the country, on the telephone, to confidently help their families thrive. She is the co-founder of ImpactADHD.com, a free resource for parents, and works together with her husband, David Taylor-Klaus, in their company, Touchstone Coaching. Elaine is a regular columnist on ShareWIK.com and ImpactADHD.com, and writes for “Living Without” and "Womenetics.com" magazines. Follow her on Twitter@TouchstoneCoach and @ImpactADHD.

Read more columns by Elaine Taylor-Klaus here.

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