In 2011 we found that we were about to be grandparents of a little boy who had a cleft lip and palate. It was a huge learning curve for his parents and for us as we learned how to feed him and navigate the multiple surgeries coming his way. His grandfather wrote in a letter about sweet baby Michael: “I thank God that he is surrounded by a family that will love him without expecting him to be perfect. To be captured by a tiny life that will respond to us without regard to the world’s standards, but only by the way we respond to him. Others may look upon him with sadness, compassion, or even disappointment. But they have missed the truth. They just need to look into those beautiful eyes (that reflect the reality of a unique and wonderful God-shaped spirit within that little body) and realize how mistaken they are.”
A few years later, following an early childhood assessment, Michael was referred to a genetics counselor. Testing revealed he had a relatively rare condition caused by missing a part of a chromosome (genetic deletion) which could result in a variety of physical, developmental, and cognitive disorders. This was a shock to all of us. Just as we were beginning to process this new information, a new diagnosis was added to his file: autism. His mother compared hearing this to an umpire calling out “strike three!” There was so much to accept, to learn, to understand, and many necessary resources to find.
With the hope that we can offer some encouragement or tips to other grandparents of special needs grandchildren, here are a few of the lessons we have learned:
- With the original diagnoses, we not only had a grandson with special needs, we also had a son and a sweet daughter-in-law who were heartbroken and struggling. We all needed patience as we adjusted to this new information and permission to grieve, as this is not what any of us envisioned. But we moved on to accept our grandchild’s disability so we could be genuinely supportive parents to our children when they needed us. We wanted to assure them that we love this grandchild just as much as those who preceded him or those who will follow. We became students of Michael, learning the “way he should go” (Proverbs 22:6) and how best to love, relate to, encourage, and support both him and his parents.
- We became educated about his particular disabilities and needs and were open to participating in therapies, appointments, meetings, and more, if that was desired by his parents. You, as grandparents, don’t have to become experts, but do take the time to get the basic facts about your grandchild’s condition and its accompanying struggles or challenges. My children’s parenting experience will be totally different than mine may has been in raising more “typical” children, and we will be careful not to give unsolicited advice. We are learning the terms and lingo associated with our grandson’s diagnoses so we can listen well with comprehension. Our children have been very welcoming of our participation in Michael’s everyday life experiences, including therapies and appointments. I am grateful to be included in those conversations.
- With all of our grandchildren, we try to enter their world by learning about their interests, favorite things, current activities, food preferences, communication styles, and other facets of their lives. This works the same for our grandchildren with special needs. We are learning how to use a designated speech device (iPad with special apps) to communicate better with Michael, who is non-verbal. We get so excited and cheer when he learns new words or combines several words into a phrase. We have learned to use blue-tooth portable speakers for his favorite activity: listening to music while joyfully running around. We try to have a supply of cheese sticks, Craisins, fruit strips, and granola bars on hand for his visits. We know how to pull up his favorite programs to watch (Daniel Tiger) and his favorite stories (Pete the Cat). Recently, while waiting for Michael to finish a therapy appointment, I was reading a book about autism. Prior to being called in for his appointment, a mom with a young child in the waiting room commented, “That’s a really good book that I found very helpful.” I mentioned that, as a grandmother, I was learning a lot from it when she sadly said that she wished her father would read it. She told me her child’s grandfather is “afraid of him”. My take-away from that interaction is this: don’t be the grandparent who “just doesn’t get it.” Move past your fears for the sake of those you love.
- Love the grandchild’s parents in practical and helpful ways. Parents of special needs children have extremely high divorce rates because it brings so much stress into their daily lives. They didn’t ask for this life situation or do anything to cause it. Your support can fall into several categories. Consider helping financially if that is feasible; therapies and special equipment are expensive. Support them emotionally and remember that empathetic listening shows caring. Give them encouragement, praise, compliments, and respect. Practical helps might include surprising them with meals on busy days, assisting with chauffeuring, or babysitting so they can have time away. (This last tip is invaluable since there may be few people or places where they feel comfortable leaving their child.) And, of course, support them spiritually by praying for all of them. I Samuel 1:27-28 is a wonderful summary of Michael’s life: “I prayed for this child, and God gave me what I asked for. And now I have dedicated him to God. He’s dedicated to God for life.” (MSG)
Over the past 10 years as a grandparent of a special needs child, I have been through an array of emotions. The Merriam Webster Dictionary definitions of “special” include: “distinguished by some unusual quality, held in particular esteem, unique, exceptional, surpassing what is common or usual, designed for a particular purpose.” None of those descriptions sounds negative or undesirable to me. We prayed for the Lord to “knit Michael together in his mother’s womb” (Psalm 139:9) during the nine months before his birth, and He did just that.
Michael is designed for a particular purpose and we pray that God will continue His knitting project in Michael’s life every day to give him the strength, wisdom, peace, and comfort for whatever lies ahead. And we have the privilege of participating in that developmental process as his grandparents. Our value and success as grandparents is measured by the process of grandparenting, not the results. For each of our grandchildren, whether typically developing or neuro-diverse, the question is this: “Is my life helping or hindering them in their paths toward God?”
I am a grandparent of a special needs child. Because of this, I have a deeper realization that I have disabilities of my own: greed, selfishness, a lack of self-control, and more. I am more aware that all our futures are unknown – Michael’s, his parents’, and my own. Through Michael’s life, I am learning how to deal with hard stuff more graciously and patiently, how to communicate without total dependence on orally spoken words, how to experience joy every day in the little things, and how to be the unique person God designed me to be. I am learning how to be content with the unknown, “in any and every situation” (Philippians 4:12, NASB). I see Jesus through Michael’s life and thank Him for him.