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.

Honoring the love and patience of mothers of autistic children

Carol Forsloff---He banged his head on the floor, screamed, kicked his feet, while his fists pounded the air, then opened and clenched to hit anyone nearby, until in a few moments his mothers voice, with her whispers and gently coaxing began to create what looked like a miracle to anyone watching at the time.  Her hands touched her child's hands softly, moving the fists aside, opening the fingers, as she smiled and continued to coax.  It was a moment that revealed both the struggles of the child with autism spectrum disorder and the mother whose loving patience provides an example to all mothers everywhere.

Today is Autism Awareness Day, a time to recognize the needs of exceptional individuals with autism spectrum disorder.  But even more it is a time to honor the mothers of autistic children whose responsibility of parenting offers special challenges.  Yet they meet those challenges often with the kindness and affection that can be a marvel to the observer.

When a woman marries she anticipates a good life with husband and children.  Most young women need to work, and many have careers.  The responsibility of the household on an emotionally sustaining basis often rests with the mother, even in those cases where the father is actively involved.  Yet the woman who has borne the children and has spent the physical time carrying the child, then learning of the issues that an exceptional child might bring, has a unique responsibility and opportunity as well.

In the preceding example, the young woman has fraternal twin boys, both of whom have autism spectrum disorder, although one of the boys has a more serious disability than the other.  The mother leans over and listens, nods and understands what others cannot.  She opens the refrigerator and pulls out a bunch of grapes, as the child begins to calm and begin eating, without looking at his mother, and wanders into another room.

Mealtimes, bedtimes, playtimes all these periods during the day can be stressful, because change of any sort can be disconcerting to the child with autism spectrum disorder.  Lack of attention and problems with change are both hallmarks of the disorder.  Most very young children need extra attention, just because of their immaturity; but the autistic child's behavior makes growing up and learning the benchmarks of appropriate interaction very difficult.  It is a mother's guidance and patience that can make a difference in the child and the whole emotional atmosphere of the family, from the father of the children, to other siblings and family members, such as aunts, uncles and grandparents.

According to Autism Speaks, "Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors."These are the difficulties parents of these children deal with daily, and even with help from their families, neighbors, friends, the state and the school system they are faced with the responsibility for the care of the special needs child throughout their lives.  Vacations alone as a couple are often impossible; and if the parents have the time and means to spend some entertaining times together, they know that time is precious and the responsibility of the daily work continues, no matter other family needs.

For grandparents there are also new perspectives, as the expectation of most parents is that their children will have healthy children.  When grandparents see their adult children with added stress and responsibilities, there is a certain degree of pain and disappointment at the same time.  But as time passes, grandparents find the same degree of joy, only different, with their grandchildren.  Small accomplishments are important and celebrated.  At the center of much of this celebration is the mother whose own parenting remains central to the family relationships and how others relate to the children.

Every day is special for mothers who care for their children, raise them with love and patience and take the time to parent well.  The mother with the autistic child, however, can serve as a model for everyone, of how to take what otherwise might be a burden and turn it into life's real joys, even when the child cannot give back in similar fashion.  That is the measure of true courage and the best example of motherhood, even as scientists continue to look for answers about the causes and treatment of autism spectrum disorder.