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The Isolation of Being a Special Needs Parent

Oftentimes, parents of special needs children experience isolation.

Raising children with special needs can be both challenging and rewarding, often within the same day (or even hour). 

Our emotions as special needs 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. Sometimes the littlest bit of progress sparks intense pride and joy.

There is no textbook for parenting a child with special needs. We are left to navigate this journey without clear instructions.

Many special needs parents deal with feeling isolated. We long to find others that can relate, and that 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. That might make us feel a little guilty.

RELATED: SPECIAL NEEDS PARENT GUILT

But it is not always possible in our new role as the parent of a child with a disability to meet friends, buy tickets to a show or even attend an informal social gathering. Things are different now, and we feel more alone. 

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The Harsh Reality About Special Needs Parent Isolation

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 that the people with whom we surrounded ourselves had drastically changed.

READ: THE ELEPHANT IN THE PLAYROOM: ORDINARY PARENTS WRITE INTIMATELY AND HONESTLY ABOUT RAISING KIDS WITH SPECIAL NEEDS

Being a Special Needs Mom is Lonely

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. 

Special needs parent isolation can feel overwhelming. Being a lonely special needs mom creates chronic stress and overwhelm. Learn how to cope with the struggles of being a special needs parent and how to overcome the isolation of parenting a child with a disability.

Our energy levels change

While we fondly reminisce about our social lives before becoming a special needs parent, 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.

RELATED: SPECIAL NEEDS PARENTS AND ANXIETY

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 that 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. 

READ: RAISING YOUR SPIRITED CHILD

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. 

We aren’t able to casually make connections with other parents.

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. 

READ: THE EXPLOSIVE CHILD

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 as special needs parents. 

READ: NOT WHAT I EXPECTED: HELP AND HOPE FOR PARENTS OF ATYPICAL CHILDREN

The Effects of Chronic Stress and Special Needs Parent Isolation

Mental burnout

The ongoing effects of feeling isolated and being a lonely special needs mom can lead to more severe consequences.

Many parents of special needs children experience mental health issues themselves, such as anxiety and/or depression.

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