This Isn’t What I Expected

Being a Grandparent of a Child with Special Needs

Emily Pearl Kingsley wrote an article in 1987, called Welcome to Holland, about her journey as the mother of a child with disability. Essentially, it was about how being a parent of a child with disability is akin to planning a trip to Italy, only to find out that the plane you were on was actually destined for Holland, an entirely different place and culture than you had planned.

The point of her article was that we all have certain expectations about what the parenting journey will be like. For the parents of children with disability, it is important to understand that the change of destination in whatever dreams a parent may have is just a different place—not better or worse, just different. She concludes by saying, “if you spend your life mourning the fact that you didn‘t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”

She makes a good point. In fact, grandparents of children with disability face a very similar interruption in their expectations and dreams about grandparenting, especially if the grandchild has a severe disability. While Emily Kingsley’s point about learning to make the most of whatever destination we find ourselves as parents or grandparents is a good one, I wonder if there might be a different, more beneficial way of looking at this role.

If we stop to think about it, is being the parent or grandparent of a child with disability much different than parenting or grandparenting any other child. After all, none of us really knows where this journey will end up in the long run. Even if we end up Italy, rather than Holland, there are any number of possible outcomes along the way that we cannot truly anticipate – divorce, abuse, injury, rebellion, disease, drugs, sexual orientation. Any of these present us with challenges that we may never have dreamed would be part of our journey as grandparents.

Perhaps, every grandparent (and parent) ought to be asking this question instead: Do my expectations as a grandparent have more to do with me than this child God has placed in my life? Do I see this as an opportunity to help this child discover the truth about themselves, and the God who made them? If not, it’s time for a perspective adjustment.

It really doesn’t matter whether we are in Holland or Italy because wherever our journey takes us, we have no idea what is ahead. What we do know is that God is Sovereign and He is with us. We know that we can cast our cares on Him because He cares for us… and that precious child. And we know this precious child that is so precious to Him has also been made in His image.

One more thing we know for certain: God has given us “everything we need for life and godliness through our knowledge of Him [Christ] who called us according to His glory and goodness” (2 Peter 1:3), and therefore, “I can do everything through Him who gives me strength” (Phi. 4:13).

I love the perspective of one grandfather of a severely disabled child. After driving some distance to the hospital where his grandson had been born, this grandfather held his grandson and whispered to him, “Paul, if the only reason I was put on this earth was to be a grandfather to you, that is good enough for me.” He then looked at his son and said, “It’s going to be okay, son. My God will supply all your needs. If you don’t believe that, let me hold on to that for you.”

Now that’s perspective – the kind that will make a difference no matter what the destination.

If you are struggling with this unexpected role you have been thrust into, here are five things you can do to make the most of your situation:

1. Keep the channels of communication open: Your adult children need to know you are doing your best to understand the challenges they are facing. Ask questions that demonstrate your willingness to learn and offer support where they most need it. Resist the urge to pull away. Ask them for guidance that will best serve them and your grandchild.
2. Be present: In this age of digital technology, even long-distant grandparents can be present in ways we never could before. As your grandchild grows, let him or her see you or hear you often. Stay connected. A great tool for recording stories with your own voice that can be sent digitally to a computer is LuvYaReader.com. 
3. Be reasonably available and flexible: This is especially important if you are close by. While it can be true for almost any grandchild, things can change very rapidly for many children with severe disabilities. Your willingness to be flexible and change your plans to help out can be huge.
4. Look at your grandchild through God’s eyes: Resist looking at him as a disabled child. See him as God’s child made uniquely for a unique purpose. Do everything you can to communicate that value and love to your grandchild.
5. Be creative: This is true for any grandchild, and though they are all unique, for a child with a disability, it is especially important to understand that they may not respond to things in the same way as other grandchildren you may have. Learn what things they do respond to and find creative ways to engage them so they can express themselves.

It’s all about the heart. God has placed you here to bless this special grandchild. How you do that depends on the perspective you have about this child God has placed in your care where you are.