From The Mighty
By Laurie McLean
November 23, 2018
Raising children with disabilities can be challenging and rewarding, often within the same day — or even hour.
Our emotions as parents are complicated. We can simultaneously feel like giving up and also be ready to go to the ends of the earth for our children.
We experience high highs and low lows. We fight battles for our kids to get them services, appointments, accommodations, understanding and acceptance.
We often fail and feel hopeless. Yet the littlest bit of progress sparks intense pride and joy.
There is no textbook for parenting a child with disabilities. We are left to navigate this journey without clear instructions.
Many parents deal with feeling isolated. We long to find others who can relate to our experiences and who can reassure us that we are not alone.
Even more so, we wish that we could still hang out with our friends from before our child’s diagnosis. We miss the way things were.
We want to still be included and have friends, date nights, parties, casual hangouts and happy hours. But that might make us feel a little guilty.
In our new role as the parent of a child with a disability, it is not always possible to meet friends, buy tickets to a show or even attend an informal social gathering. Things are different now, and we feel more alone.
The Harsh Reality About Special Needs Parents and Isolation
1.) Our social circles change.
When our child was first diagnosed, we were thrust into a whirlwind of appointments, specialists, treatment plans and therapy.
By the time we came up for air, we probably realized the people with whom we surrounded ourselves had drastically changed.
Instead of playdates at the park and chats with other moms while the kids run around, we are now spending time in waiting rooms or driving back and forth to appointments.
Those bonding moments with other parents at your child’s school party or Halloween parade are now spent either supporting your child or waiting ever vigilant in case he/she needs you.
There are no casual invitations to meet for a drink later with the other parents because your child is not a part of their kids’ social circles.
The isolation your child feels because he/she is different and not fully included with his/her peer group now extends to you as the parent.
2.) Our energy levels change.
While we fondly reminisce about our social lives before having children with disabilities, the reality is that we just don’t have the energy we once did.
We may be physically exhausted from caring for our children — we now have to lift, bathe, feed, change and literally chase our kids to keep them safe.
Our children may have medical needs that we manage and their personal care is still our responsibility, even if our children are physically growing.
Our emotions take a heavy toll on our energy.
We live with an underlying anxiety and hyper-vigilance, ever ready to battle the next challenge that presents itself for our children.
We attend meetings, therapy appointments, spend hours on the phone, and have notebooks and paperwork a plenty.
We worry our children will not be accepted, or worse, bullied for being different. We fret about their futures.
Our mental energy is often depleted and we find it easier to play it safe and not risk the disappointment of unsuccessful social outings.
Some of our isolation is because we find it easier to just stay home.
We live in defense mode and are too tired to make the sustained effort to join social circles. After all, it will be mostly our responsibility to keep up with it since we are not naturally standing on the sidelines or helping at school and able to casually make connections with other parents.
3.) The offers to help dwindle.
As our children get older and their needs seem more pronounced, it is more difficult to find babysitters or even family members to watch them.
We observe that other parents seem to regain their social lives as their children get older and a bit more independent. We watch as groups of moms form bonds and enjoy their girls’ nights out.
We turn to the internet, desperate to find others who are stuck at home, unable to leave their medically fragile or behaviorally challenging children with babysitters.
Our marriages often become strained because we rarely have time to do anything as a couple, choosing instead to tag team parenting duties in order to shower or spend a little time with our other children.
That’s if we even have a spouse. Many of us are single parents doing this demanding job all on our own.
If we have other children, they often feel the isolation just as acutely as we do. They miss participating in extra curricular activities or, if it works out that they are members of something, we are rarely able to support them as a family by all of us showing up.
We feel so utterly alone, isolated and cut off from the rest of the world.
The Effects of Isolation and Chronic Stress
1.) Mental burnout.
The ongoing effects of feeling lonely and isolated can lead to more severe consequences.
Many parents of children with disabilities experience mental health issues themselves, such as anxiety and/or depression.
Living in a constant state of defense mode and hyper vigilance causes mental fatigue and post traumatic stress symptoms similar to that which combat soldiers experience.
The residual effect of chronic stress may lead to feelings of hopelessness, heightened anxiety or panic attacks.
Isolation compounds these symptoms as parents may feel alone in their struggles and are unable to see an end in sight.
2.) Physical issues.
In addition to the mental fatigue associated with ongoing stress and isolation, parents may experience physical health issues as well.
The negative impact of stress on our physical well-being may include a decreased immunity to common colds and flus and an increase in back and neck pain and headaches.
Other chronic health problems associated with stress are affected glucose regulation and immune functioning, making parents more susceptible to contracting illnesses.
Some parents try to manage their challenges alone. The mental and physical effects of isolation and chronic stress need to be addressed.
How Can Parents Deal With Isolation?
1.) Find others who can relate.
There are many parent support groups — online and in your local neighborhoods.
It is crucial for you to find other people who can relate to the struggles of feeling isolated and stressed about raising a child with disabilities.
Often the connections and camaraderie made online between us are what enables us to feel less alone.
2.) Research qualified caregivers.
This may not be as easy depending on where you live. However, it is worth some extra effort to research and ask around to find someone qualified to provide care for your child.
Care.com has a section where you can request someone who has experience with disabilities.
Local colleges often have programs (such as nursing, education or even social work) and students are looking for side jobs and experience relating to their major.
Contact local agencies and ask for their recommendations. Sometimes you just do not know all that is available.
3.) Change your perception of self-care.
We often roll our eyes at the many articles out there telling us how important self-care is and getting time to ourselves. We are well aware of the benefits of alone time, but it’s just not our reality that we can take off for a mani/pedi with our girlfriends or attend a happy hour with our co-workers. However, there are some small changes we can make in our day to better take care of our mental and physical health.
Often times we just need to ask and be specific with others about our needs. It’s not easy, but we cannot navigate the journey of parenting kids with disabilities alone.
Parent isolation is very real and can be very debilitating. If you know a family with a child with a disability, don’t forget about them.
Bottom line is we need each other. We need help. We need support.
It takes a village, and parents who have kids with disabilities especially need that community effort to prevent isolation, overwhelm and burnout.