My grandson is on the spectrum
BY GIORGINA LIGUORI
There are moments in life we never forget. For me, one such moment was a phone call from my daughter-in-law two years ago.
“Mom, I think there is something wrong with Griffin.” I thought she meant physically. “What’s wrong?” I asked. Sharon replied, “I think he has autism.” I said, “Sharon, I don’t think so. He talks, he walks, and he makes eye contact. He is ‘with us.’” And then she said the sentence that will haunt me forever, “Not anymore.”
She said it happened suddenly, in one night. She’d come home from work and called out to him. He didn’t answer, though he was only a few feet away. She thought he was deaf. But no matter what she did, he did not seem to acknowledge her presence in any way. It was as if a curtain had come down.
Sharon called and made an appointment with a well-known specialist who confirmed a diagnosis of moderate to severe autism.
My son Brian, Griffin’s daddy, was scared and upset. He told me once, “I go into the shower to cry.” He believed he had to be strong and not show how his heart was breaking. It broke my heart to hear his sadness, but I listened.
I think listening is one of the most important things a grandmother of a child on the spectrum can do. Be there. Don’t tell the parents what they should do; listen and let them know that you are still their mom and will always be their “safe place.” Let them know: You can be angry here. You can cry. You can express your fears and your despair.
“I think he has autism.”
Griffin has made great strides in the last few years. He is in a special school and receives tutoring. He has a special voiced computer with pictures. He knows what he wants and can tell you by pointing to pictures on his computer. He points to a picture and the computer says “I WANT CHEERIOS.” If you give him something different, he will go back and hit the Cheerios button again.
He can tell you, in the same way, if he wants to go outside, go to the beach, etc. He can point out his sister, grandmother, family friends, etc. If you tell him, “bring me your shoes, we’re going out.” He brings the shoes. He laughs and plays with his sister and her friends. He is an amazing athlete like his dad. He plays basketball and swims like the proverbial fish.
But he is still “on the spectrum.” There is little interaction with children his age. He does not speak. It is really a strange thing to comprehend. He can make sounds. He understands words and follows commands very well, but he speaks very few words when prompted to speak and those are vague at best. He understands the concept of speech. I like ginger ale and so does Griffin. If I say, ginger, he will attempt the word ale, which comes out more like awl. But he understands that this is the word for the soda. So, I asked one of his tutors, “If he can make sounds, which he can, and if he understands that things have names and he knows what those words are, why can’t he speak. She said, “I wish I knew.”
If he can make sounds and understands things have names, why can’t he speak? She said, “I wish I knew.”
My grandson is a happy child. One of my friends said, “He is a very lucky little boy.” I know what she means. My son is with him practically 24/7 and carries him on his shoulders quite a bit. Brian seems to have infinite patience. The boy is very attached to his daddy; that’s his “go to” person.
But, I think Sharon and I are the only people who know the heaviness and sadness Brian feels. He doesn’t show it to the world. Recently we have all become optimistic, seeing Griffin grow and expand in what he can do. But, as he gets older and still does not speak, that is a major concern.
I love to play with Griffin. There are others in the extended family who are hesitant around him and quite a few others who do not want to babysit or take “turns” with him, so it is hard for Brian and Sharon to go out and have some alone time.
I love to sit with him. I admit it is hard to get him to go to bed. Like many kids on the spectrum, he needs very little sleep and is very active. So, I don’t try. I put a pillow on the couch next to me, allow him to play nearby, and when he’s tired, he comes up next to me and rests or sleeps.
He is affectionate with family members and shows a special “connection” to me; he pats me on my cheek and under my chin.
I do some things to help. I offer to cook meals, I babysit, I’m optimistic, but not ridiculously so, I don’t promise that “he’ll be fine” but do point out gains. And I listen. My son may be six feet tall but he’s still my boy, my baby, and sometimes he simply needs a mommy’s hug. Another thing, I insist that Brian and Sharon each take time for themselves.
Sharon is better at it. Because they have another child who is a girl, Sharon makes “girl time” for shopping, getting nails done, or just hanging out together. But it is harder for Brian as most young men his age are working during the day, when he is home.
I teach a class, run groups and have done radio shows and speaking engagements on “healthy selfishness.” If you are not taking care of you, you cannot take care of anyone else. And I point out that anger and resentment do not just go away. It will come out as temper, depression, addictions, etc.
Griffin is a beautiful sweet child. Does his condition make me sad? Yes, sometimes. I get angry when because it seems that this situation is happening to more and more children and more and more families. But the majority of the time, I can enjoy this beautiful little boy. He is sweet and affectionate with a smile that would make any grandparent’s heart swell.
I do feel concerned for his dad, though, especially because in the area where they live, in Westchester, NY, there are many groups for kids on the spectrum and some for moms of special needs kids, but nothing for dads. I hope that changes soon.
I work with a group of teenagers called Builders’ Club, under the Kiwanis group in Coral Springs. They raise money for charities. The students do research and study each charity and we raise a great deal of money for children’s charities and animal charities. For Autism, without a doubt the charity we like the best is NEXT for Autism. We have raised money with candy sales, jeans days, and individual projects.
I wish there were more support groups for parents and especially for dads. I wish more money would be spent on research and more schools for special needs kids and hope someday that will be a reality. Meanwhile, grandparents can be a great source of help, encouragement, and stability.
ABOUT THE AUTHOR – GIORGINI LIGUORI
In addition to being a mother of three and proud grandmother of five, Giorgina Liguori happily wears three more hats. She is a writer for television, newspapers, and books. She’s a counselor who runs women’s and parenting groups and was trained at Cambridge University to teach writing classes to tweens and teens.