Amanda Smith’s voice halts periodically as she talks about her 9-month-old son Oscar. After a totally uneventful pregnancy, Oscar was born with a rare genetic mutation neither Smith nor her husband carry. He spent the first two months of his life in the NICU due to uncontrolled epilepsy and feeding difficulties before testing revealed his genetic mutation and doctors found medication to manage his seizures. When Oscar was discharged at 2-and-a-half months old, Smith, 33, suddenly found herself staring down life as a millennial raising a child with special needs. “We came home to a complicated life we weren’t expecting to live. We still don’t really know what sort of prognosis he has — so having a whole closet full of kids clothes up to 2 years old, it is like: Will my kid ever get to wear this? Will my kid ever get to do a lot of things?”
Hearing Smith’s words, I am momentarily stunned by the memory of a time I was certain my daughter Esmé, who has multiple rare genetic mutations, would not survive: Overcome with grief, I stood in her closet sobbing and throwing piles of her precious baby clothes in bags intended for Goodwill, the sight of them was unbearable to me. Six years into being Esmé’s mother, I still find myself relieved to know I am not alone in my responses to grief. At the same time, I am also devastated to know there are other mothers who cannot expect their children to become independent, to be healthy, to be safe, or even to survive.
Having a kid with special needs can feel like you live in an alternate reality while watching your "typical" friends and family access schools, vacations, and lives that are just not for you, not for your family, and not for your child. Yet, millions of millennial parents are in the same situation. According to the Centers for Disease Control and Prevention (CDC), one in six children between the ages of 3 and 17 in the United States have at least one developmental disability. With millennial women having around 80 percent of the more than 4 million babies born in the United States each year, well... there are a lot of us out there.
If you are raising "typical" children — children without life-altering developmental disabilities — you probably know some of us. But you may not know much about us or about what our daily lives really look like. For instance, you may not know that many of us are living with stress levels similar to those of combat veterans. You may not know that some of us have to unfollow you on social media, because the photos of your children vacationing with you on the beach, videos of your toddler's milestones, and complaints about your mom stress are just too much for us. You may not know that, despite our current apparent fluency with all things medical and developmental, we were not necessarily any more prepared for our children's challenges than you would have been. You may not know these things about us... but we want you to know.
Most people recognize that special needs parents are under immense stress. It’s one of those things that almost everyone assumes — but in a way that almost shrugs off the true weight of it. I regularly find myself thinking that those who shake their heads and say, “You seem so together. I don’t know how you do it,” would be shocked at the intensity and extremes of parenting children with special needs. Mothers of children with special needs can face additional stress that comes with medical PTSD, caregiver burnout, and intense concerns over their child’s future, which can exacerbate the already very real stressors of typical millennial parenthood.
While we know this to be true, Judy Grossman, DrPH, OTR, a therapist who directs the Resilient Families Special Needs Project at the Ackerman Institute for the Family and has spent most of her career working with parents raising children with disabilities, says that often parents raising children with special needs lack the full support they need to address these challenges. Support for special needs families tends to focus on the children, while the needs of their parents, especially caregiving mothers, go unmet. "The parents have a lot of emotional needs, especially early on," Grossman says. In the early pain and confusion surrounding a diagnosis, parents can experience intense feelings of loss and chronic sorrow.
As time goes on, that grief may become less acute — although in my personal experience it flares up during my daughter's health crises or challenges like her recent surgery — but there are other costs. Special needs parenting is just more time consuming, which means less time to enjoy being a family. And then there is the burden of coping with everyone else’s opinions. Most parents find their parenting choices being judged at some point, but some special needs families report facing or fearing criticism or unwanted opinions from family members about medical choices or the source of behavioral problems. Sylvia Klein, 25, whose 2-year-old son, Gadi, has cerebral palsy, says that she and her husband chose not to share Gadi’s diagnosis with family at first. She tells Romper, “I wanted friends and family to continue treating us as they did before…We felt like they were going to question us, like we should get another opinion.”
According to Grossman, parents raising children with special needs find themselves needing to be therapists and nurses as well as parents. "The parent knows best and the parent knows first," says Grossman, and as a result the parent inevitably become the primary "detective" investigating their child's needs. In my experience, this means that parents are often expected — by themselves and the professionals they work with — to carry much of the weight of their children's health and well-being.
Like all millennial parents, young parents of children with special needs turn to the internet to inform themselves about their children's medical and behavioral conditions. However, many of us raising children with rare or complex disorders Google things that are so obscure that all of the search results are articles in medical or scientific journals. This means that making sense of what little information we can find about our child's conditions requires a level of self-education that most people would never attempt. (Seriously, check out what happens when I google my daughter's fourth genetic condition.)
Becoming an expert in every area in the life of a child with special needs can be all-consuming. In my life, this has meant learning therapies that dictate the details of virtually every interaction I have with my daughter. Therapists have instructed me in how to make sure I hold things in Esmé's visual range, correct her positioning as she plays, facilitate her play with peers, establish reasonable personal boundaries, and safely experiment with limited oral eating. I have had to be trained in how to be with my kid.
I also monitor for symptoms related to the issues associated with our dozen or so specialists, oversee a team of nurses and caregivers (when we have them), and stay on top insurance over of what amounts to hundreds of thousands of dollars a year in medical bills. This makes for busy days, which can leave parents like myself unable to maintain roles beyond caregiving. Somewhere amid the chaos, you can disappear. Elise Murphy, 33, a mother raising two children with autism explains, “There is something about losing your identity in all of this that happens just quickly and without warning. It takes a lot of effort to gain it back.”
Much like their peers raising typically developing children, millennial moms of children with special needs turn to social media to cope with and learn about their unique families. Alexandra Samuel, an author and expert on how the internet affects business and society, is the mother of an autistic son. She suggests that special needs parents often use social media as a lifeline and offer "one of the strongest cases we can make for social media in general."
Mothers in the special needs community are renowned social media users, turning especially to Facebook in order to connect with support groups. Samuel says that, when you consider that many special needs parents struggle with the logistics of just leaving their home, social media can provide an important connection to the rest of the world. Grossman concurs, "Especially if [your child has] an uncommon disability like some of these [genetic mutation] disorders or…other disabilities with low incidence, it is very helpful to connect with other parents so you don’t feel totally alone.”
On the other hand, social media can also be a painful or stressful reminder for this group of parents of the gulf between their lives and the lives of their friend and family raising "typical" children. Jessica Jenkins, 22, whose son Dustin is deceased, explains that she is on social media much less since Dustin died last year. She says, “Seeing other typical children, beautiful thriving children…maybe it’s a pang of jealousy in a way, but it stings.” Other mothers I spoke to for this piece say that they had to unfollow their friends raising typical children because it was too difficult for them. Samuel agrees that unfollowing can be a good means to preserve the best parts of social media and advises fellow parents in the community: "Unfollow anybody who is talking about their kids in a way that makes [you] feel jealous or sad or resentful ... people don't need to apologize [for that]."
For me personally, perhaps the most frustrating experience of social media is the some of the reactions I get to posts about my child, which can be outright hurtful, but are more often naggingly troublesome. There are a handful of followers of my daughter's Facebook page who reliably use the sad face emoticon on even the happiest photos of my daughter. It's just another reminder that many people around special needs families do not see the complexity, strength, and beauty I see in my child. Whether it is people making thoughtless comments on Facebook, or people like the woman at the Farmer's Market who recently stared openly at my child in her new exciting wheelchair, and loudly whispered, just as we passed her, "So, sad..." it is overwhelmingly apparent that a certain segment of the world reacts with sorrow, no matter what glorious thing my kid does — read, dance, or self-propel.
These misperceptions, like most, arise from a lack of information. Most people just don't have any idea what raising a child with special needs entails. Few of us did until we were in it ourselves. To make this actually not-so-uncommon experience more visible, Romper's Now You See Us series features six millennial moms of children with disabilities telling us in their own words what people don't see when looking at their families. Here are their stories:
Elise, 35, mother to Connor, 7, and Taylor, 3
For Elise Murphy of Staten Island, raising her children Connor and Taylor is an exercise in understanding the spectrum of autism, and how the condition can affect children differently. Both Connor and Taylor have a diagnosis of autism, but it means very different things for their lives. Connor, now 7, still struggles with concentration, social interactions, and transitioning between activities. Taylor, who is 3 years old, is now progressing rather typically. Speaking to Elise, I am struck by how she balances the challenges of raising her children with great deal of love and honesty.
Read Elise's full story here.
Celine, 24, mother to Grace, 22 months, and Uvuri, 3 weeks
Celine Robinson speaks about her 22-month-old daughter, Grace, while holding her younger child, a cooing 3-week-old named Uzuri. When talking with Celine about Grace, it is impossible not to feel the intensity of her maternal love. Every word that Celine says about Grace is spoken with palpable warmth. Grace has Down syndrome — a fact that came as a surprise to Celine and her husband at Grace’s birth.
Celine is now a vocal advocate for changing the stigma that surrounds Down syndrome. She also wants to discuss Grace’s secondary diagnosis — something she has not been open about before.
Read Celine's full story here.
Amanda, 33, mother to Oscar, 9 months
Amanda Smith's son, Oscar, is one of around 375 known individuals with a genetic mutation in the gene SCN2A, which regulates sodium channels in the brain. The mutation is known to cause autism or abnormal brain function with epilepsy. In addition to epilepsy, Oscar has developmental delays, feeding issues, and visual impairment, and takes medication to help prevent the close to 100 daily seizures he experienced as a newborn. Amanda is excited to tell me that, just a few weeks before our interview, Oscar started smiling.
Read Amanda's full story here.
Sylvia, 25, mother to Gadi, 2-and-a-half
As I chat with Sylvia about her life, her 2-and-a-half year old son, Gadi, occasionally chimes in. She apologizes to me, patiently asks him what he needs, and then turns back to our conversation. It seems like such a typical mother and toddler interaction, except that Sylvia was told Gadi would never speak. Gadi has spastic quad cerebral palsy, meaning his cerebral palsy (CP) affects all four of his limbs and, as in the vast majority of cases, results from damage to his brain's motor cortex, causing muscle spasticity.
Sylvia proudly says that Gadi is talking “like a teenager.” She is clear that despite Gadi’s struggles, she and her husband try to treat him like any other kid.
Read Sylvia's full story here.
Virginia, 27, mother to Deniz, 18, Tatiana, 17, Joyce, 11, Antonio, 9, and Nicole, 4
Virginia Contreras runs a busy bi-lingual household in the Bronx. There is an ever-changing number of children in her home, but only one of them is her biological child, Nicole, 4. She also has two adopted children, Joyce, 11, and Antonio, 9, who initially came to her for foster care, and two current foster children, Deniz, 18, and Tatiana, 17.
Virginia and her husband, Maicor, 29, specialize in fostering children who are known within the foster system as “therapeutic” cases — children who come with disabilities, behavioral challenges, or other special circumstances that require foster parents to be specially trained to care for them. Maicor's parents are also foster parents; for this family, fostering children is a multi-generational calling.
Read Virginia's full story here.
Jessica, 22, mother to Dustin, deceased
Jessica Jenkins lives in Jersey City. My conversation with Jessica is so fundamentally different than all of the other interviews for this series. We talk about her birth story and how she came to know about her son Dustin’s genetic mutation, but not in the same way as I have with the other mothers. Jessica’s son is deceased. If he were still alive he would have just turned 3.
Read Jessica's full story here.
Photography: Ashley Batz. Art direction: Brit Phillips. Illustrations: Chelsea LaSalle.
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