What Being a Grandmother to an Autistic Child Is Really Like

What is it like being an autism mom? The ups, the downs, and the emotional struggle.

How about from a grandmother? This is an essay I wrote, basically for myself a couple of years ago. Feel free to use it if you can and are so inclined. I call it "Living (and Loving) with Autism"

“That’s pretty good, Joe!” my first row football player said, looking over his shoulder at the boy three seats behind him. “Pretty good,” he repeated, ”that is if you’re smart enough to get it!” I wanted to hug this great hulk of a man-child. Clearly, he was “smart enough to ‘get’” the somewhat obscure joke his classmate had just told, unlike the majority of their classmates who missed the point completely and chose instead to snort and scoff and laugh AT rather than WITH the jokester. But then such is often the lot of one who is “different”, “strange”, “weird”, the lot of one who is AUTISTIC.

I’m not certain when I first heard the term “autism.” I know it was years ago, long before I could know personally the sadness, the anger, the outright fear that comes with such a diagnosis. Long before I would meet the precious child whose destiny it would be to provide me with first-hand knowledge of what autism is capable of…of what it is like to be autistic, to be the parent of an autistic child…to be the grandmother of one.

At birth he was everyone’s perception of what it is to have the “perfect” newborn: flawless skin, beautiful blue eyes, “ten little fingers, ten little toes.” He was so beautiful, in fact, that a photographer his parents hired asked permission to use one of his photographs as an advertisement for her business. That photo is still on her web site, and every time I look at it, it still takes my breath away. He grew, he smiled, he did all the “right” things…until he didn’t. I jokingly referred to him as our little “touch-me-not.” He shied away from skin-to-skin contact, from cuddling of any sort. And somewhere deep inside, I felt a warning bell go off. I pushed it aside, pushed it way down deep so I could barely hear it…but still it chimed. So I looked a little harder, watched him just a little more closely as he grew. I scrutinized his movements, watched for the rudimentary signs of development: does he babble? No, not really. Does he say “mamamama” or “dadadada”? Does he point at things? No…not yet. Does he reach out for you? Sometimes…at least he does sometimes…I think. (As Charles Dickens once noted in his novel, Great Expectations, “All other deceivers on earth are nothing to the self-deceivers.”)

Then came the day he received his MMR injections. He had done fine with his other routine shots…perhaps a low-grade fever, some crankiness, all perfectly “normal” reactions. But this time was different. This time his mother says he cried, almost inconsolably, for three hours after being given that shot. Clearly, his little body was not receiving the medicine well. The final blow came that night when it was time for bed and she put him in his crib. As soon as she laid him down he began to rock his head from side to side, as if he were saying, “No, no, no, no, no.” And as his little head moved back and forth, left and right in the self-soothing, repetitious pattern so familiar to us now, our hearts echoed the painful denial, “NO! NO! NO! NO! NO!”

Now would probably be the appropriate time for me to launch into the tirade. denouncing medicines like the MMR. I suppose I could. Only a fool would maintain that what happened to my grandson on the same day he received that injection was merely coincidence. Yes, the truly “abnormal” (hereafter referred to more accurately as “neuro atypical”) behavior began immediately after his receiving that shot. But we had seen aberrant behavior before that, as well. There are those mothers and fathers who will contend, until the day they die, that medicine given to their sons or daughters as babies is to blame for their autism. I can neither confirm nor deny that. I just know that parents of children on the spectrum have enough to contend with without arguing about what did or did not bring about their child’s autism. To be perfectly honest, it doesn’t matter…at least to me. Even if I knew for certain who or what was to blame, knowing it will not take away Bryant’s autism. It will not take it away; neither will it perceptibly lessen or relieve it.

One of the most hurtful things about being the grandmother of an autistic child is watching my own child grapple with life after the diagnosis. By Thanksgiving, shortly after Bryant’s first birthday, I felt almost certain that he was “on the spectrum” (euphemistic for “autistic.”) My son and I were briefly alone at our house after Thanksgiving lunch, and we were discussing Bryant’s “little oddities.” My son said, “I just hope it isn’t autism.” As gently as I could, my heart breaking with every word, I whispered, “Honey, I’m afraid it might be.” It is one thing to suspect that your child is autistic. To have your mother confirm your suspicions is another thing entirely. Tears welled up in his eyes and his whole face reflected his shock at my confirmation. Until you actually hear that word “autistic” used to describe your child (or grandchild), you can at least pretend that there is a chance it is not true. To have it confirmed, both by your mother and, reluctantly, by a leading child psychologist, is not only devastating, it is life-altering. I will always remember the day that Bryant was diagnosed with autism as one of the darkest days of my life. As extreme as it sounds, I liken that event to a death. Gone is the child you thought you had. Gone are your hopes and dreams for that child. Gone is the relationship you once had with the child you thought you had. Gone. It’s all gone.

Statistics confirm that the sooner a child diagnosed with autism begins receiving therapy, the greater the likelihood of “success” (whatever that means). Within days of his diagnosis, Bryant was taking speech and occupational therapy, a pattern that has followed him since his diagnosis. He knows no other life. In the course of his ten years, Bryant has experienced life in ways those of us who love him have no personal knowledge of. We struggle to understand that while we have moved on from one question to a third or fourth one, he is still pondering the answer to the first one (not because he is “mentally challenged”; on the contrary, he is extremely bright) because he wants his answer to the first one to be absolutely correct. He has little understanding of the rules of propriety—he is as likely as not to tell you that you’re too fat or your breath is bad. He may ask you how old you are or he may ask if you like him. In other words, he may say out loud the things the rest of us are thinking but are afraid to say! He asks endless questions (questions are his primary way of communicating) not because he doesn’t know the answer (he almost always does) but because he cares about you and wants to have a conversation with you, and questions are the means he knows best how to use. He is terrified of storms (we once spent an hour trying to get him to leave the lobby of a movie theater when he had a total meltdown during a lightning storm.) Because of his “sensory issues”, as he calls them, he cannot stay in a room where there are lights that “hum” (even in his favorite toy store.) When he is challenged, he can become agitated and raise his voice to an unacceptable level. All of this, and much more, I have come to accept and understand.

But I would be extremely remiss in leaving it all here. Allow me to share that, like most all the rest of us, Bryant’s strengths far outweigh his weaknesses. First of all, my grandson loves people—all people-no matter their color, their dress, their hair, or even their bad breath!  He loves to have visitors, and the first words out of his mouth after he says, “Hey!” to his granddad and me are, “Are you spending the night?” He is better than On-Star at providing directions (if he has ever been there once, he can take you back) and if you like, he will even pretend to be On-Star (he does an uncanny version of one of their agents.) He is an amazing artist. He is especially fond of athletic logos (though he has absolutely no interest in playing or watching others play) and his drawings of athletic team schedules look as if they have been professionally printed. He has the sweetest, purest heart. His mom and dad presented him and his brother with a golden lab puppy Christmas morning, and as they were playing with it Christmas afternoon, Bryant suddenly interrupted their play and said, “We haven’t thanked God for our puppy! We need to pray for our puppy!” His mom asked him if he wanted to say the prayer, and without hesitation, he prayed the sweetest, most specific prayer, that they could keep Copper for as long as he lived, that he would love them and take care of them and they would do the same with him, that he would be healthy and happy always.

And so, this is life with Bryant. Would I remove his autism if I could? I confess, I don’t really have a good answer for that (nor a bad one either, for that matter... ) I know that God makes no mistakes. It was with His permission that Bryant was born with autism. Every child sent to earth from God’s heavenly assembly line is made perfect by Him in his or her own way, so I cannot doubt that before He sent him to us, God considered Bryant perfect. And so, of course, do we. And we love him---we love him without reservation, without qualification. My biggest concern, my greatest fear as he grows is that others—those who don’t love him, those who don’t understand him and don’t try to or want to—my greatest fear is that they will make him an object for their ridicule or, God help him, their laughter and their cruelty. He is only 10 years old. He is still young enough for his parents and grandparents to protect him, to shield him from others’ derision and ridicule. But we will not—we cannot--be there forever. It is then that we must depend upon you—the parents and families of children who are “neurotypical”, children who are “normal”—parents who can sleep through the night without checking several times to make certain all the doors are still securely fastened and their child is still in his room, parents who can just toss their son or daughter a carton of yogurt for breakfast instead of having to leave early to run by Chick-fil-a because that’s all their child will eat, parents who can drop their child off at school knowing that s/he will not wander away from the schoolyard during recess, parents who pick their child up in the afternoon without fearing every day that they will be met by a teacher who says she can no longer control that child and s/he must sit out the remainder of the year, parents whose children are always invited to parties, always included in sleepovers and playdates—it is you that we moms and dads, we grandparents and other family members must depend upon to raise your children RIGHT. Raise them to be respectful, to honor ALL people—people of all colors, all races, all genders, all religions, all levels of education, all ages, all nationalities, all abilities, ALL people. Raise them to reach out in love and with a grateful heart. Raise them to pray for others, especially for those who want to belong but don’t know how. Raise them to be fearless in their choice of friends, and raise them to be examples of what a true friend should be. Raise them to be people of character, of integrity. And for the love of all that is holy, raise them—as the parents of my football player did—to CARE about people who are “different.” Raise them, as those parents did, to come to the defense of those who lack the skill to defend themselves.

I love my “special” grandson with every ounce of love there is in me and then some. I just hope and pray that you will find it within your heart—and those of your children—to love him, too.