You've heard it before, the African proverb "It takes a village to raise a child". Its inherent truth has led to it being repeated for generations, oftentimes to a worn out new parent by a wise elder from a couple generations before. Childrearing almost always turns out to be more than we bargained for--especially in this post Internet, social media laden world where two parent households aren't always the norm and even if they are, both parents are likely working outside of the home. Gone are the days when parents had a built-in village of support from family members, friends and neighbors. Nowadays, though we're more "connected" than ever through social media and Facetime, families are spread out across the world and friends and neighbors are buried under their own responsibilities and daily struggles. This reality is hard enough when parenting healthy children, but what about when that's not the case?
According to US News and World Report there are approximately 3 million children in the United States alone that are considered medically fragile or medically complex. These children often require intense round the clock care, expensive medical equipment/medications, specialized schools and/or programs on top of the usual needs a child has. It's a tough load to bear, yet for millions of parents around the world, it's their daily reality and they do it alone or with very little support from the seemingly mythological village described by generations past.
When our son was first diagnosed with Dravet Syndrome, a form of epilepsy described in medical journals as "catastrophic", the doctors at a prominent New York City hospital told us that they were sorry, but they had just let their whole social work department go due to budget cuts and that our best bet would be to check out the Epilepsy Foundation's website. So much for a village. What I found online when I researched my son's condition was so heartwrenching that I stopped searching for help altogether. The reality of other people's stories was too overwhelming and if I was going to move forward and be a functioning adult and caregiver to my son, I was going to have to protect my mental health at all costs. The online websites and support groups were out. Though I was surrounded by loving and concerned family, friends, co-workers and neighbors, the 24/7 reality of this diagnosis belonged to my husband and me alone. This type of isolation, fear and uncertainty can only truly be understood by parents who have had the rug pulled out from under them in a similar way. Ironically though, when there are "catastrophes" around the globe, the whole world rallies in support of the suffering. All you have to do is turn the news on today to see examples of that from every corner of the planet. What I found in the decade that followed my son's diagnosis though was that when your child has a rare disease (also referred to as an orphan disease because treatments are often not considered profitable due to their cost to develop and limited patient population), there is no world-wide effort to ease the burden. Sure, we held walks to raise awareness and fundraisers to support research towards a cure, but all of those grassroots efforts were the result of a small group of families desperately grasping at straws to effect change.
So what's the impact of all this and even more importantly, what can these parents do to weather the storm and limit the effect it has on their own health and vitality?
Families in Crisis- The Reality of Raising a Medically Fragile Child
When planning a family, no one ever dreams that their child will develop a life-threatening medical condition. Yet, when it happens we're left so glaringly unprepared--often blindsided, grief-sticken and lost. On top of all of the usual aspects of parenting (prepping meals, establishing good bedtime routines, getting involved in school, etc.), parents of children with complex medical needs are also getting a crash-course in their child's condition, often becomming experts on a topic they couldn't even pronounce prior to their child's diagnosis. Yet without even having time to get their feet on the ground and come to grips with their new reality, parents in this situation face a cascade of additional blows as a result of their child's condition. This avalanche of catastrophes eventually leads to a crisis situation. Let's take a look at the hurdles families encounter and how each one impacts their quality of life:
Job Loss- It's inevitable. When a child is facing a life-threatening condition, someone has to be there to see that proper care is provided. When my son was diagnosed with Dravet Syndrome I was working full-time as an elementary school teacher. As seizures started occurring regularly, we ended up spending time in and out of the hospital, requiring me to take sick days and make extensive sub plans for my fill-in while I was out. The stress of having to call in sick paired with my desire to leave detailed plans for my substitute so my students would be well taken care of in my absence would have been stressful enough even if my child wasn't sick. Eventually my husband and I realized that the life we had planned simply wasn't going to work with our new normal and I ended up resigning from my position at the end of that school year. In a blink we were down my $80,000+ annual salary and I had lost the opportunity to earn the teaching pension that would have served us well in retirement. We certainly weren't alone in this. The Washington Post reports that approximately 40% of parents in the U.S. who have medically complex children will leave their jobs to become full-time caregivers. That means that a staggering number of families are losing a large portion of their income while simultaneously racking up insurmountable medical bills.
Marital Strife- Spoiler Alert: Having children adds stress to a marriage. This is so for parents who have healthy, typically developing children, yet even moreso for parents of children with complex medical needs. As Ann Gold Buscho PhD. explains in Psychology Today, "when you have a child with special needs, your marriage is much more likely to be stressed. This is demonstrated by the numbers-- surveys show that the rate of divorce in families with a child with disabilities may be as high as 87%." 87%!! Those are terrible odds. So not only are these families struggling with the pain and grief of their child's medical condition, they're also dealing with the breakdown of their family unit. The effect this has on all members of the family--including siblings--is profound.
Social Isolation- It probably goes without saying, but when a child has a complex medical situation the natural tendency is protect that child at all costs and stay close to home. This allows the parents to feel a sense of control over a situation that often feels so much the opposite. The natural result of this need to stay close to home is social isolation. In my private practice as a Special Needs Parent Coach and Special Education Advocate, I hear stories of lonelines, exclusion and isolation all the time. Whether it's the parents being isolated from their usual social circles or the child or sibling being exluded from gatherings or events with friends, the pain of missing out is felt deeply by all members of the family. Many clients express the desire to connect with other parents that "just get it". There's an innate lonlieness that shadows special needs parenthood that's hard to convey to those who haven't experienced it first hand. This inherent chasm between the haves and have nots when it comes to having healthy children often feels insurmountable.
The Cost of Caretaking- Uncovering the Mental, Physical, Emotional and Spiritual Toll
Twenty-four hour caretaking of a child with complex medical needs takes a profound toll on parents that extends far beyond the previously stated financial burdens, maritial discord and social isolation. The heavy daily challenges impose a complex web of side-effects that often go unnoticed--or pushed aside--until it's too late. The constant vigilance and sleepless nights that last long past infancy paired with the wild emotional rollercoaster of medical ups and downs and the physicality needed when caring for an older child, teen or young adult, leads to mental exhaustion, anxiety, depression, chronic pain and illness.
According to a study featured in the Journal of the Canadian Academy of Child and Adolescent Psychiatry, "A significantly high proportion of parents of children with intellectual disability (ID) have psychiatric diagnosis of anxiety, depression or both, needing mental health services and support. Nearly 50% of the parents were severely anxious and about two-thirds were clinically depressed (Bitsika & Sharpley, 2004)." Intellectual disablitity does not automatically imply medical complexity, but often the two go hand in hand. Those statistics may be shocking, but they wouldn't be surpising at all to a parent in the trenches. The unrelenting daily pressures of caretaking on parents' mental health are a silent epidemic in the special needs world.
The physical demands of caretaking also add to the cascade of stress exacted upon parents. Children are easier to take care of when they are small, but as they grow and mature, their stature can often exceed that of their parents. Lifting, positioning, dressing, transporting, managing clunky medical equipment--it all adds up to a range of health issues for the caretaker from back pain to sleep disturbances due to the need for round-the-clock vigilance. The sheer physical endurance required in caring for a child with complex special needs can leave parents physically drained and in chronic pain.
Emotionally, parents navigate a complicated grief that doesn't fit neatly into the cultural definition of the term. They grieve for the life they thought they would have, the healthy child that wasn't to be, the dreams of soccer games and birthday parties and carefree vacations with extended family and friends. They grieve for a child that is still alive and a life they are not living. This complex grief often lives in their head and heart, unspoken, all while they are attempting to provide unwavering support, positivity and a sliver of normalcy for their spouse, their children, and even themself.
Spiritually, the journey can test the very core of one's belief system. Faith that once seemed so solid is put to the ultimate test when watching a child suffer. Parents grapple with deeply spiritual questions about life's fairness and the purpose of it all. Social isolation can rear it's head in this area as well as many parents report having difficulty finding places of worship that offer special needs programs for children with complex needs.
How Did We Get Here?
It took generations for our villages to disseminate and it's important to keep in mind that it will take time to rebuild them. Parents of children with complex medical needs--as well as those with healthy children--have to get comfortable with the idea of reaching out when help is needed. However, this is easier said than done. Many of us grew up as latch-key kids in a time before "helicopter parenting" was even a thing. Coming home to an empty house at the end of the school day taught us to be independent and handle things ourselves. This had some great benefits (like we could eat all the Cap'n Crunch we wanted AND we learned how to be self-sufficient and resilient.) The draw back was that we internalized the "I can do it myself" mentality and have since paid the price in our adulthood. The good news is that we know now that although independence is a great attribute to have, we also have to flex our inter-dependence muscles in order to truly thrive.
The women of Generation X were sold a well-intended lie that has come back to haunt us all--especially those of us who are shouldering the added responsibility of caring for a child with complex medical needs. The lie, which was born from the enthusiasm of the women's rights movement, was that we could indeed "have it all". The fact is, we cannot--at least not all at the same time. Today's women are juggling their traditional roles of being primary caretakers of the children and homemakers with being ambitious career women and doting spouses. And they're tired. Unless they have the means to bring on the support of outside childcare, house cleaning services, personal assistants and/or house managers, they're doing the vast majority of the work by themselves. Still, there's a lot to juggle and we've been trying to "man-up" and do it alone for far too long.
Of course there are always exceptions and many of today's men are bearing much more of the load than was the norm historically, some even switching traditional gender roles and taking care of the home and kids while their wife/partner works outside of the home. Even if that's not the case, men are facing intense pressures from the shift from 9-5 work of days goneby. Now, with email and text, expectations have shifted and the work day feels like it never ends. Pair this added pressure with additional responsibilities at home that their fathers and grandfathers didn't have to take on and it's easy to see why men feel overwhelmed. In a study from the Pew Research Center it was found that "on the home front, men are spending more time doing housework than they did in the 1960s, while women have cut back their hours in this area. Men’s housework time has doubled from four hours per week in 1965 to about nine hours per week in 2011. Women, meanwhile, have cut their housework time almost in half, from about 28 hours per week to 15 hours per week during the same period."
So What's a Villageless Villager To Do? - Reassembling Community Support
We need to re-build our villages, but how? I struggled with this conundrum for over a decade when I finally realized that I had to dig deep and channel my inner Field of Dreams "if you build it, they will come" energy. I believe so strongly that families like mine need support--just look at the divorce rate of nearly 87% for couples raising a child with complex medical needs for the proof--that I set out to start my own parent coaching and advocacy service. This is what I tell my clients and what I would scream from the rooftops (or blog page) if given the opportunity to have folks listen. In a perfect world, at the same time the doctor hands down your child's diagnosis, you would also be immediately set up with the following team members:
Your Village Starting Line Up
Therapist/Special Needs Parenting Coach - This is critical. You will need the support of someone who has either been trained in research-based therapeutic techniques or someone who has walked the walk you are walking and can hold your hand through it from the knowing place that only another parent in your shoes can know. This is a crucial village member because there are things on your mind or that you go through on a daily basis that you simply will not want to dump onto family and friends. Having a neutral third party who can listen impartially and guide you through your lived experiences in invaluable.
School Based Employees - Few people will get to know your child better than their teachers and related-service providers will. Be proactive in getting to know your child's teachers whether they attend in-person school or receive services in/outside of the home. These people have been trained in many areas that you likely have not and can offer an incredible amount of insight, support and resources that you might not otherwise be privy to.
Marriage Counselor - See team member #1. Remember, the divorce rate for parents of children with complex medical needs is reported to be 87%. This is not okay. The stress of 24/7 caretaking paired with the multitude of other stresses related to adulting in the 21st century is enough to break even the strongest of bonds. A marriage counselor can help you process the emotions that are wrapped up in the trauma of your child's diagnosis. Talk to a counselor today so you don't have to talk to a judge tomorrow.
Bestie - Everyone needs a friend they can rely on to take their mind off of the daily struggles and remind them of the fun-loving, carefree person they used to be. Hopefully you have a friend who lights up those places in your heart, but if not, seek one out. I know, I know, this is easier said than done, but again, this is a critical village member. Perhaps there is another mom in your child's class or a neighbor down the street or that girl you bump into at the local coffee shop every morning and exchange pleasantries with. You'll need a villager that reminds you to take care of you, to laugh, have fun and let go. This is equally important for the dads out there. Find a bromance that takes your mind off of the stresses at home and helps you to come back to center.
Spiritual/Religious Mentor - Maybe you're part of a religious organization that feels like a second home. Lean into the support offered there. Maybe you're not yet connected to a religious home, but want to be. This is a great time to check out some local places of worship to see if one feels like a good fit for you and your family. (Pro Tip: Ask at your initial visit if they provide any services for children with special needs. The last thing you want to do is find a new "church home" only to realize that it's not conducive to your family's needs.) If you're more spiritual than religious, dive deep into that arena. You don't have to physically know someone to count them as a member of your village. Some of my favorites to share with clients are Dr. Joe Dispenza, Deepak Chopra, and Abraham Hicks. Fair warning, some of the spiritual stuff is super woo-woo, but if you find it helpful, that's all that matters.
Self-Care Professional - It's not going to be easy, but you're going to have to make time for self-care. Every so often you're going to sneak out for a day of pampering and you need to have your A-Team on standby. Ask around for the best masseuse, facialist, hairdresser, personal trainer and/or manicurist in your area and then put them on speed dial. Consider them your oxygen mask--you've got to take care of your own needs before you can be any good to anyone else. If money is an issue, be your own self-care pro. Stop by your favorite local store and grab a new bottle of nail polish and some bath salts. Schedule some time when your child/children are at school, after they've gone to sleep or when your spouse/respite caretaker can take over for a bit and pamper yourself. Guys, same goes for you. Go for a run, take a hot shower and shave, go for a drive with your favorite 80's rock playing--whatever it is that makes you feel like you're taking care of you. Go out and do it.
Respite Care Worker - Ideally you have family and/or friends closeby who are willing to step in and take care of your child for a bit while you unwind or take care of other pressing business. If this is not the case for you, assemble your own respite team of caretaking professionals. Seek out nursing care, a nanny, or professional respite through an agency that is well-prepared to help in the process. There may be a state-funded program to help you secure these services (in North Carolina it's called CAP/C) or you might find assistance by asking your child's teacher or related service providers for leads. You might also find care through local camps or programs for children with special needs. These camps are often run by trained professionals who know how to work with children with needs such as your child's and they offer an invaluable break for both you and your kid. If you're local to the Raleigh, North Carolina area, check out Camp Chameleon which is run by two Special Education teachers and was a fantastic experience for our son.
Doctors/Specialists - This is another biggie. We had to break up with several doctors before we found the incredible team at the Comprehensive Epilepsy Center in New York City and then eventually the team at Duke Children's Hospital in Durham, North Carolina. What I've learned first-hand is that just because someone is a doctor doesn't mean they understand your child's condition. One of the hardest parts of seeing doctors and specialists, especially in the early days of our diagnosis, was having to explain what Dravet Syndrome was to the professionals we were seeing for answers. If you're not feeling seen and heard by your child's care team, find a new one. Yes, it's time consuming. Yes, it's frustrating. Yes, it's just another hurdle that parents of children with complex needs have to navigate. But, when you're in the right hands, you'll be so glad you never settled.
Special Education Advocate - Depending upon your child's educational needs, they may end up requiring an Individual Education Plan (IEP) or 504. You can wing this process, but I highly encourage you not to. Special Education law is notoriously complex, teachers are criminally overworked and our public schools are terribly underfunded. It's a national embarassment, alas, we must muddle through. Learn what you can about how to advocate for your child through sites like understood.org or wrightslaw.com or schedule a complimentary introductory call with an experienced advocate (I'd be happy to help!) to help make sense of the process. Your child only gets one shot at their education--intervening early and being an active member of their educational team is critical.
YOU - You cannot take yourself out of this equation. You are the CEO of your family and you are also an essential member of your own village. I often ask clients during our intial coaching sessions who the most important person in their life is. Nine times out of ten they will name some other member of their family whether it be their child with complex needs, their spouse, all of their children, what have you. I remind them every time that as counterintuitive as it may seem, they are actually the most important person in their life. At the end of the day, the only person you have control over is you. If you put yourself at the end of your very long list of priorities you are going to burn out and be of no use to anyone. Prioritize you--not in a selfish way of course, but in a "I matter too" kind of way that we're not super comfortable with in our modern day society. Most people I encounter need a lot of help with this concept. That's why I developed the P.E.A.C.E. Protocol for Parents of Children with Special Needs and the Individual Endurance Plan (my own version of an IEP) that supports parents in the long journey of caretaking. You matter too. Don't be a martyr.
martyr (noun) mar·​tyr ˈmär-tər : a person who sacrifices something of great value and especially life itself for the sake of principle
The journey of parenting a child with complex medical needs should never be walked alone. Humans thrive on community and wither in its absense. Rebuilding a supportive village structure is key to moving from merely surviving to actively thriving. The goal is to navigate the challenging road of caretaking surrounded by the strength and support only our fellow humans can offer, ensuring that our children receive the best care possible while also maintaining our own well-being. As our village grows, so does our resiliance and hope for a brighter future for us all. It takes a village, but we can get there.