Recognizing Humanity in a Young Man with Down Syndrome
An honest conversation with Solo Mom Lene Jaqua about her son Benjamin
Lene Jaqua is a Solo Mom who balances a professional life as a college professor with the realities of parenting her 20-year-old son, Benjamin. She also has three other grown children. Jaqua may be a petite, blond Danish gal, but she is also a brilliant, strong, and passionate woman.
Benjamin is a sharp dresser with a kind heart, and he also has Down syndrome, obsessive-compulsive disorder, and a significant speech disorder. As a young adult, he gets services through Colorado’s Medicaid waiver program for people with intellectual and/or developmental disabilities.
I asked Jaqua some questions about raising Ben as a Solo Mom.
Q: As a Solo Mom, what is the most challenging part of caring for Ben?
A: The most challenging part of being a Solo Mom of a young adult with special needs is finding adequate, reliable, quality dependent care so I can go to work. Without my going to work, my family cannot function on a daily basis.
Think back to those early days when your typical kids were young and you could not go anywhere without first procuring a sitter. That mode is persistent for many of us special needs parents, with the additional difficulty of obtaining a respite care worker who is comfortable with a young adult with significant support needs as well as with some behavioral “differences.”
Q: What is your greatest challenge?
A: My biggest interpersonal challenge in caring for my son is in the area of speech and language. Benjamin has a cleft lip and palate, which has always presented him with significant challenges in hearing and expressive language skills. His communication challenges, I believe, have directly led to his obsessive-compulsive disorder and coping mechanisms. He has a great need and desire to connect with others, but his attempts are often not understood, so people ask him to repeat himself. At that point, he usually just clams up.
His mechanism for not facing these speech issues is to focus on a few winning strategies, one of them being birthdays. He celebrates daily the birthday of one of his many stuffed animals. (They are all named Ben.) He will announce that Ben the Bear is having his 69th birthday today, so let’s all sing “Happy Birthday” to Ben the Bear. This daily occurrence feeds part of his need to communicate in that it is understood, and it connects him with whomever he is facing; however, it is also shallow and does not fill his need for meaningful emotional affirmation and reciprocal give-and-take.
Q: What do you wish were different?
A: If I could wish anything for Ben, it would be that we would have a breakthrough in speech and communication to help him express how he is feeling and thinking, and that he could feel heard and affirmed. I would wish for him to be able to extend that sort of connection to other people in his life. At the core, I think he is profoundly lonely with his thoughts and ideas, and it pains me that I do not know how to break through that communication barrier and help him feel more connected and included.
Q: What advice would you give to other Solo Moms caring for kids with significant needs?
A: It is superimportant to have friends from many different spheres and walks of life. I have Ben’s special needs caregivers, his school connections, and now his job coaches, day-program staff, professional therapists, doctors, etc. Many of those have become wonderful personal friends. Those who also have dependents with special needs are priceless friends who understand the daily grind for young adults with significant support needs, and I would not trade them for anything.
However, what keeps me sane is having a couple of other worlds to tune in to. One would be my work, which I love. It is great to set aside special needs and traipse off to work to a flock of wonderful, cooperative people who know nothing of AFOs [ankle-foot orthoses], hearing aids, Medicaid waivers, or family-recruited employees.
Then there is my writing world. I write books, I blog, and I also belong to a wonderful writing group of moms with special needs dependents who meet and explore life in its challenging and beautiful facets. Writing is communicating to others, and it is a form of healing therapy where thoughts and feelings can be gently put, smeared, or even hurled onto paper.
Q: As a Solo Mom, what is something that nourishes you as Ben’s caregiver/guardian?
A: I have been greatly enriched and nourished by just the privilege of living in such close proximity to such a remarkable young man as Benjamin. He is an adult in his own right. I see that daily as I look at him, see what he is capable of, look at his stamina when he faces the discomfort of health challenges. His ability to take pain and accept it, relax through it, and just wait it out is amazing.
I am not trying for the saccharine sweet “isn’t special needs just wonderful?” answer here. It isn’t just wonderful. It is plain hard work to tie a person’s shoes every morning, to make sure he doesn’t walk out with jam drizzling down his shirt, to clean up after him. It can be superchallenging, especially when I am in a hurry (he does not “do hurry”) or when I am sick. Likewise for my son, it can be superpainful for him to note his own differences and so keenly live every day knowing that many people just stare at his different face and move on rather than connect with him, precisely because of those differences he has.
However, for those of us who have the privilege of interacting with persons with special needs, I truly believe that the more we interact with all facets of humanity—the old, the young, as well as those with significant physical, mental, and emotional challenges—the more human we become ourselves.
Most of my work life is the life of the mind—contemplating calculus, the motions of the stars, how molecules move. That life is not a life that my son can engage in. His life is concrete; his joys and pleasures are direct. While there is no great sophistication of thought in him, neither is there guile or pretenses. Recognizing him as a real human being, a person—even at a time when he exhibits some gross behaviors—accepting him without judgment, loving him, and at the same time fully seeing how far he has come in life, nourishes me. Recognizing that having Ben and Ben alone in my life is the reason I can see this so clearly and has changed me to the point I can see and love deeper than I otherwise would be able to. Sometimes when I look into his eyes and see deeply, I am, perhaps, beginning to get a glimpse of the face of God.
May we all see, hear, and communicate with people with significant disabilities the way Jaqua shows us we can.
If you are a Solo Mom to a child with special needs, we invite you to join our closed Facebook group ESME Special Needs for support and connection.
Anna Stewart is ESME’s Kids with Special Needs Resource Guide and the Solo Mom of a daughter and two sons on the brink of adulthood. She’s a champion for the rights of people living with disabilities and those who love them.
Please feel free to contact us with any comments or questions.