Wednesday, November 19, 2014

On learning your grandchild is autistic

Ribbon symbol of autism spectrum disorder
It was a stunning phone call. Our twin toddler grandsons were diagnosed autistic. Our son told us in a tone that spoke of grief and confusion. What we learned about ourselves and the disability strengthened our family and gave us lessons we would like to share.

"Are you sure about it?" we asked. That question, innocent enough, was inappropriate given the fact our son had told us several times the children had been taken to doctors specializing in assessing children with special needs. Experts say that families should reinforce the parent's coping abilities, not minimize their resources or their capabilities in the face of learning a child has a serious disability.
We should have simply asked, "What did the doctor say?" The flow of details could spark the right discussion about the specifics about our grandchildren so we could offer information or comfort necessary in this instance.

We learned the twins are different in the details of autism. Over time we found, both by observation and by asking questions, that autism, according to reports, runs in families and not everyone exhibits the same behaviors. Our grandchildren are fraternal twins with different body types, and along with that they exhibit unique behaviors. This is a common aspect of this disorder in that patterns of a child's interaction may be as different as they would be in separate families.

In the case of autism spectrum disorder, family members often have to adjust just like parents to a different way of relating and to different benchmarks for watching children develop. Experts say there is a range of differences in autism spectrum disorder as there are in any other conditions, but the usual diagnostic criteria that defines it makes the child stand out as unique from others of similar age. The language delays, the problem with social interaction, and what is usually defined as inappropriate behavior, like throwing temper tantrums publicly or fondling the genitalia, is often clearly seen.
Adolescence is a difficult time, but for adolescents with autism spectrum disorder it can be especially that. How adults accept and manage behaviors can make a difference in how they learn to adjust as adults, medical experts tell us.

One grandson over the years is interactive, speaks to us and gets involved in play. As a 15-year-old he is beginning to explore the world in many ways, that would be seen as socially inappropriate outside his social sphere. Two years ago we noticed he touched his genitals frequently while engaged in simple interaction, that might simply be showing us a picture or bringing us a bit of food from the kitchen, which he enjoys doing. We have learned to ignore much of that socially inappropriate behavior and focus on what he does that involves some new accomplishment, like a drawing or a piece of writing he likes to share with us.

Our other grandson seldom ventures outside his room, except to meet his physical needs. He relates with both his parents, but without eye contact and with few readily understandable words and gestures. Their parents, our children, understand, however, and say they have enough time and experience with both children to know what they want and need. They can interpret gestures and words that we cannot.

What we have learned in a decade of being grandparents of autistic children is to relate with them is little different than how we relate with our other grandchildren who have no disabilities. We support our children and reinforce their parenting skills, give suggestions only when asked and accept and give affection during visits. We've gone past that initial heartbreak to knowing what our grandsons can and cannot do and just accepting them as children with the curiosities and dynamics that are unique to them.

What we have learned, beyond all else, is that our grandchildren need love and acceptance like all other children do. As grandparents giving that is our special role and what we intend to do, happily and proudly for the rest of our lives.