In 2017, this piece won a National Press Club Award in the category of Speech Content. I wrote and delivered this to attendees of the Planetree Hospital’s International Conference on Patient Centered Care in Baltimore, MD. It was written when Nora was 9 years old (today she is 14). As you will see it addresses a medical audience, but I believe it can offer a perspective to most anyone.
Ten Things You Might Not Know About
the Parents and Caregivers of Special Needs Kids
I am a caregiver.
I am the grandmother of Nora, a Special Needs child.
During the past nine years, I have supported my daughter in Nora’s care, having spent many thousands of hours in hospitals, doctors’ offices, physical and occupational therapy appointments, and school IEP meetings.
Nora was born with epilepsy. Our family was blindsided. We were catapulted onto an emotional and medical rollercoaster ride, which included having Nora transported by helicopter at just three weeks old, to Boston Children’s Hospital from Connecticut. There they finally diagnosed her with Large Left Cortical Displasia: a brain malformation.
After many anti-seizure medications failed, it was determined that Nora was a good candidate for hemispherectomy surgery. At five-months old, she was one of the youngest at that time to have it. The surgeon set out to disconnect the left hemisphere of her brain from the right, but her excessive bleeding caused him to abort the full surgery. It was finally completed when she was 18-months old. Since then, she has been seizure free.
Today, Nora has both physical and developmental challenges. She has hemi-paresis, which manifests as a slight paralysis or weakness on one side of her body- her right side. She wears leg braces and has no real use of her right hand. As a result of the surgery, she has Cortical Vision Impairment, meaning she sees only out of the left side of each eye, which compromises her visual processing, spatial navigation, and information processing. By the grace of neuro-plasticity and thousands of hours of therapies, I am delighted to say she is now a third grader who continues to amaze us with what she CAN do.
Our experience inspired me to become a speaker on the topic of the power of perspective, and to write and self-publish a memoir of our story titled “Waking Up with Nora”. I donate the proceeds from the book to help Special Needs kids.
This experience informs my list of the Ten Things I came here to share with you. What makes my perspective somewhat unique is that I am typically the “third wheel” in the room- the other set of ears for my daughter. Not having to be actively engaged in the decisions concerning Nora, I have the unique perspective of being able to listen and observe the interactions of all involved- their communication, expressions, and emotions.
However, in addition to my own perspectives, I have also included in this list of things the responses that I received when I canvassed parents and caregivers across the country about what they would like you to know.
Here are our Ten Things . . .
#1 Grief
A Special Needs diagnosis isn’t the end of life, but it is the end of life as we have known it.
A Special Needs diagnosis means the death of our dreams for our children. And with that, we must manage that grief in order to help our children manage their own interactions and self image among those in the typical world who may not understand.
It is an always active and unhealed grief, because our lives include landmines of grief at times when our children face medical procedures, social scrutiny and exclusion, no friends, or when we discover one more thing our beloved children may never be able to do.
What you might not know is that we grieve our own deaths in sleepless nights worrying about what will happen to them when we are gone.
#2 Isolation
Having a Special Needs Child is typically isolating. Family members and friends often don’t understand how different our lives are from theirs. Sometimes, they are embarrassed by our children.
Over time, Special Needs parents end up having less in common with friends. It’s difficult for both sides to navigate otherwise natural conversations on the subjects of typical kids’ achievements versus those of ours. Friendships get strained and they often die.
Special kids can be hospitalized more often than typical kids are. The isolation parents often experience comes from having no support systems, no visitors, and no relief. Most often, one parent is dealing with everything- no sleep, the child’s unique needs, reactions, emotions in the hospital, and medical information and decisions.
What you might not know is that Special Needs parents often feel alone and always feel that they are failing.
#3 Reactions
You, the medical and therapeutic communities are so important to us! When you help our children, we are so grateful. Because this room is full of Planetree providers, you already realize there is so much more to healing than good medicine.
Does it sound silly to say that the sea of faces entering our lives and our hospital rooms is overwhelming? Do you realize every time you enter our hospital room or examination room we come to attention and we brace ourselves? It never gets easier.
What you might not know is how your demeanor, the expression on your face can actually make or break our day. What you might not know is that the energy you bring with you into the room lingers after you are gone.
There were many nights that I slept (or didn’t) in my granddaughter’s hospital room. On those emotionally dark nights, I was scared and vulnerable. Some of the aides who took Nora's vital signs were particularly gentle, and spoke compassionately with me. When they or the nurses lingered a bit to ask how I was, or comment on my granddaughter’s beauty, it helped me immensely. I still remember post-surgery how the surgeon stood there and said, “Your Nora is the star of the NICU”. I don’t know if it was even true, but you cannot imagine how that helped us. What you might not know is that these may seem like little things. I assure you they are not.
#4 Loss
Because of the many demands of raising a Special child, mothers especially struggle to maintain their careers. Many have had to give up their careers, the significant income, and professional identities and status that went with them.
I see this with my daughter. The MBA she earned and marketing career that resulted from it were halted, because her life is run by Nora’s needs, doctor’s appointments, tests, and therapies.
It may sound trite and incidental, but adding to her loss of identity, she feels that being addressed as “Mom” instead of her name in medical situations just adds to it.
So, what you might not know is that when dealing with a Special Needs parent, you are likely dealing with a person who is running on empty, low on self-esteem, high on guilt, and who has lost some sense of self.
I was shocked when I read a Facebook post from a Special Needs mom, who posted: Today my father took his own life. When I told my [Special Needs] son his reaction was, "Oh okay". I am not upset with my son, but it really makes me wonder if he just processes things differently.
I am not a mental health professional, but I fear for a woman who seems to be focusing so much on her child’s reaction she is negating her own.
#5 Time
What you might not know is that Special Parents have several full-time jobs.
Most often, caring for a Special Needs child is in itself a full-time job. The time spent advocating for services, finding the right specialists, medical care, therapies, equipment, and investigating insurance coverage is a full-time job. Getting kids to doctors and therapies appointments, while trying to hold down a job is insanity. Often, all three jobs and more fall on the shoulders of one person.
What you might not know is that: Special Needs parents are doing all they can to juggle many appointments and priorities. For that reason, they can’t simply take any available doctor’s appointment. They need someone to answer the phone when they call, or to save precious time they need to be able to leave a detailed message. They need a call back and a call back in a reasonable amount of time.
#6 Trust
What you might not know is that when we tell you something isn’t right with the child, we know. Trust it.
Special Needs parents know their kids because they have come to be so hyper-vigilant about all aspects of their lives. Parents of these kids know you have a job to do. They often can make it easier, and save you time in the process. Please listen.
#7 Too Much Information.
Special Needs can mean many things. These children's levels of individual awareness can vary greatly. I think that probably goes for dealing with all children in medical situations.
What you might not know is how talking about them, including about sensitive medical information in front of them, is not helpful, and can be terrifying for them. When my granddaughter needed surgery on her leg, hearing that it would involve inserting a pin in her foot wasn’t a detail she needed to know. She was eight years old. Can you imagine what hearing that conjured up for her?
#8 Details
While we may not want the children to hear it, we do need to know every detail about the child’s medical situation, not a superficial overview. We need to know everything, because when we don’t, we have no idea what to watch for, how to prepare them, what they might need in follow-up services, or what the future might hold.
#9 Different.
One mother told me. She felt she needed the nursing staff to understand that her autistic son will not just sit in a hospital bed and play video games like other kids. All kids are different and have different needs.
In addition, we understand that sharing experiences can be a method of bonding, but we have no bandwidth for typical-kid aliment stories. We don’t mean to be uncompassionate, but these cannot be compared to what we go through. During Nora’s leg surgery hospitalization, her nurse told us all about her son’s overnight hospital stay for an minor injury. It’s just not the same.
#10 Hygiene
I like to end on a lighter note! What you might know, but I suspect you do- our own hygiene is the first thing to go! Gone are the frequent hair and nail appointments. Often sweatpants are the fashion of the day, and during hospital stays, showers and teeth-brushing can so easily go unrealized. What you might not know is that we apologize for what you might have to endure because of it.
One last item that I did not include in the ten because it is nearly universal. That is the financial burden. It is a rare Special Needs family who isn’t facing significant financial strain. To them, it means wanting the best therapies and services, but not always being able to have them. It means fighting insurance companies and school systems to get the services these kids need.
Thank you for allowing me to share these perspectives. My book, "Waking Up with Nora" is available on this website. Profits go to helping special kids.