Barbara is a retired technical professional. Her interests are painting, the arts, gardening, and, most of all, her family. She has three grown children and has four grandchildren (Syngapian Naya and her siblings.)
What does it mean to love a Syngapian?
There are so many ways to love. Parents (and sometimes others) take care of people with this rare disease. The caregivers seem to be gifted with faith and love to deal with this challenging life. But as a grandmother, I found myself questioning my role in our Syngapian’s life, not to mention in her mother’s — my own “little girl.” Would my granddaughter’s diagnosis change my relationship with my daughter? Before the Syngap1 diagnosis, my beautiful 3-year-old granddaughter (now 4) had missed many milestones and we knew her behavior didn’t seem “normal.” For me, the diagnosis felt like a rock hit my heart, but this was a reality to be accepted with as much grace as I could summon. At this point, I began wondering what other Syngapian grandparents were experiencing, and through the SRF community I became connected with six other families who were open to sharing their own experiences with me. I found both a commonality patterned around a shared diagnosis and its intrinsic issues and, simultaneously, other aspects of our experiences that were as unique as our grandchildren.
The response varies with the age at diagnosis
All of the families I spoke to have Syngapians, ranging from 3 to 19 years old. There are Syngapians who, through our advancing knowledge of genetics, are diagnosed as adults. The grandparents in cases where SYNGAP1 is diagnosed at an older age experience a certain level of relief from the news. They have lived with the symptoms of the disease for many years, and finally understanding the cause is a comfort. These parents view the documented symptoms as a biographical story, one they have lived. By contrast, grandparents of children diagnosed in the infant/toddler years experience a more immediate sense of grief and loss. They were aware of and accepted developmental delays, but the diagnosis dashes one particular hope: that this is something their grandchildren will outgrow.
Distance is a challenge
Geographical togetherness or separation also varies between the families. Some grandparents live in close proximity and can be more involved. The fortunate families with nearby grandparents have extra sets of hands to share the countless surprises each day brings and, often, the grands enjoy some special times while giving parents a needed break. Other grandparents must find creative ways to love from afar.
Most families felt the impact of the Covid-19 pandemic. There was less ability to be physically together and to help in concrete ways to offset daily stresses. Parents’ burdens also increased with the additional needs of siblings with remote schooling requirements and the additional needs of these siblings who lacked the stimulation and interaction with outside friends and family members. Remote grandparenting is an obstacle because our visits do not take place at frequent intervals. It’s simpler to establish close relationships with neurotypical grandchildren because they both understand and communicate using basic language skills. With them, grandparents can communicate using the telephone, email or text. With children, like our Naya, video conferencing tools, e.g., FaceTime and Zoom, are helpful in keeping grandparents’ faces familiar.
What’s a grandparent to do?
Managing seizures and medications, oral dyspraxia (feeding difficulties), hypotonia (muscle weakness), physical aggression, erratic sleeping schedules and alternative means of communication are routine to parents. Those not accustomed to meeting these needs are less at ease and, perhaps, reticent to care for their grandchildren. Physical care is needed to keep both adult(s) and children safe, but emotional support–understanding–is just as meaningful.
We can’t allow symptoms to create a chasm in the closeness we long for.
Again, grandparents who live nearby and visit frequently, gain more confidence in handling these emergent situations. Some take the symptoms in stride, but for others there is confusion and uncertainty. How can grandparents learn the skills to help? We must proceed at our own pace and be patient with ourselves as we traverse this new terrain. Like other life lessons, this takes time.
Siblings are a wonderful avenue for support
Supporting neurotypical siblings is a powerful way for grandparents to help parents who are focusing on a child with SYNGAP1. While we sometimes feel helpless with respect to the special needs of our Syngapians, their siblings are a vehicle for support. The grandparents I spoke to expressed so much pride when describing all of their grandchildren. As for myself, I’m so pleased to have grandchildren who honor and abide Naya through both her good and bad days. My daughter and son-in-law seem to have boundless energy for their family, but I know there are limits. As geographically distant grandparents, we’ve enjoyed success supporting the neurotypical siblings with their schoolwork, for example, when the siblings write about specific subjects they enjoy. We’ve covered subjects such as favorite animals, baking cakes, taking photographs and reporting on books they have read. When acting as their “virtual” writing teacher, we become closer by learning more about each other. My daughter has shared that she’s relieved there is someone in their lives who can pay individual attention to them, since Naya’s needs sometimes have to take preference in daily routines.
We never stop worrying about our kids
Common to all grandparents is concern for their adult children. The parents of Syngapians are, of course, sons and daughters, themselves. Grandparents are concerned about the extra stressors put on these families because special needs children require so much unique care. It’s more difficult to keep them safe. The many therapies they require put a strain on time and budgets. Coordinating clinical care and organizing finances requires hours of paperwork. There’s concern for siblings and for mother/father relationships. The activities of life are much more complex when dealing with special needs children. A subject of concern that deserves its own article is guardianship. Smaller families are especially concerned around this sensitive topic.
Hidden joys are found when we interact
Finally, what’s most important is the commitment both these grandparents and their children (parents) have to their sweet Syngapians. We all enjoy watching the breakthroughs and triumphs when our loved ones do well. We are “all in” for doing whatever we can. Each grandparent is interested in strengthening their relationships with their special grandchildren, despite the challenges. We are willing to learn about safety measures, mental stimulation and enrichment and helping our loved ones feel both secure and comfortable in our presence.
The exuberant laughter of a Syngapian enjoying the simple pleasures of clapping hands, enjoying a favorite food, or rides in elevators spreads a warm glow to us all. One of my favorite stories is about the little one who uses the Greek word for Grandma, “YaYa.” We can brag that our grandchildren are multilingual, and they are! These are the rewards we receive as we search for ways to show love to our children and grandchildren.
We all do what we can
Some grandparents have supported SYNGAP research through donations to SRF and in-home fundraisers. Others are learning as much as they can via SRF’s Wednesday Warriors and Webinars. One thing I am doing is opening this conversation.
In closing, I want to acknowledge all of the participants for sharing their stories. I also want to encourage other grandparents to speak. Reaching out and talking to each other helps put our challenges in perspective. Hopefully this brief article will be only the beginning of a journey we can take together.
How can we support each other? Zoom group meetings . . . “Coffee with the Grands?” A SRF Grandparents’ Facebook Page? Additional information via articles or newsletters? The Syngap1 community is interested in reaching out. Please let us know your thoughts.