7 Tips to Navigating Lonely Waters as a Caregiver for Someone with Special Needs

As someone who grew up conscious of and frequently involved in the special needs community, the loneliness that individuals with special needs as well as their caregivers may experience has always been on my radar.

Yet, when my husband and I chose to become parents to children with special/medical needs through foster care three years ago, we were greatly and painfully caught off guard by the island we found ourselves on.

Perhaps we were naïve.

Perhaps we were shell-shocked after being freshly graduated from a small-town Christian college which excelled at community or maybe we believed that we would be exempt from isolation, as we are both outgoing personalities who naturally attract and pursue meaningful relationships.

Regardless of why or how, the truth of the matter is that we found ourselves lonelier than ever before as we limped along, learning to navigate the waters of parenting children with special needs.

We ached for others to see the immense beauty we were surrounded by and also to understand the depths of our weariness and struggle as we poured ourselves out for these children.

We still have times of feeling quite alone, but the last few years have not been without a plentiful harvest of the fruit of learning.

Here are seven ways I have learned to combat loneliness while caring for children with special needs:

Adjust Expectations

I believe some of my deepest hurt in the beginning of my special needs parenting journey came from not realizing the great degree to which existing relationships would change.

There were many people that I assumed would be more than happy to continue walking alongside us—they would enjoy getting to know our children and still ask me out for an occasional girls’ day or cup of coffee.

I slowly realized that not only does becoming a parent alter relationships but becoming a foster parent can really ruffle some feathers and becoming a foster parent to multiple children with special needs….? Whoa.

So, I’ve changed my expectations.

I do my best to keep up with old relationships, but I do not expect the majority of people to understand or desire to be involved.

I cling hard to the few who have offered a full embrace and do my best to no longer ache over ignored invitations or offers to socialize that never come.

 

Be Vulnerable

When my husband and I first became parents, I remember being so fearful of sharing about much of the heartache we experienced, including loneliness.

I didn’t want to cause friends and family to feel like we were blaming them or that they were required to dive fully into the life we lived.

Also, because we were the ones who chose to be parents of foster children and children with special needs, our expressions of struggles were often met with warnings and urges to step back instead of encouragement and support to carry on.

I felt like I needed to prove that we could handle this.

I have now come to a point where I trust our calling and don’t rely as much on the approval of others.

While there will always be people who do not understand or encourage, I realized that choosing to pretend like we do not need help robs those who are able and willing to support us of that opportunity.

I now choose to be honest.

I tell people that what we do is very hard and I am open about my loneliness at times, especially in settings where I know those listening truly care and desire to help.

It was amazing to discover a few friends who were ready and waiting on the sidelines, aching to be a part of our unique story, just waiting for permission to meet needs we had not made known.

 

Educate

Sometimes people don’t mean to pull back but are driven by fear of making a mistake while interacting with your family and its unique needs.

Consider hosting an “open house” in your home.

Invite friends and family over and allow them to spend time with your children in their element.

Create handouts with tips and instructions for caring for your children, in the event that any of these people would ever be interested in assisting with your children’s.

Take time to show off the equipment your children use and maybe demonstrate a medicine/feed/treatment routine if needed.

Make it fun and highlight the ways your family and children are just like any others.

Keep it light by offering snacks and a low-key environment, but also make sure to answer questions and educate.

An event like this may help reduce or eliminate the anxiety others feel and the fear of the unknown about your children’s needs.

 

Resist Comparison

“Comparison is the thief of joy.” ~Theodore Roosevelt

When I am in my own home surrounded by my own people, I am SO HAPPY.

With six children under six and three with severe special needs, our daily life is more crazy and chaotic than I can even begin to explain to those on the outside.

But it is so very beautiful and so full of joy.

It is also hard—VERY hard. But it is OUR hard.

At the times when I do feel myself struggling with loneliness, it is often due to my comparison of my life with the lives of others.

Social media, while an amazing tool meant to connect and bring together, is also a highlight reel that brings into the open all that we didn’t even know we wish we had, driving wedges and wounds in deep.

Setting a few specific, short times in the day to spend a few minutes on Facebook or Instagram, versus access all day long, has revolutionized how I use my time and fosters a mindset of contentment.

Without a constant scroll through social media and its endless flow of the selfies of friend groups taking a weekend trip, visiting national parks, or grabbing a meal together, I don’t even know what I am missing and I am much more likely to lean into and fully experience the beauty of the life I live with my own outside-the-box crew.

 

Take Advantage of Non-Typical Socialization

While I try to limit technology at times, I also find that technology allows me to feel not so alone in many ways.

While coffee dates and hiking trips may not be frequent occurrences, things like phone calls, messaging, and video calls allow me to connect with friends and family without having to find caregivers or even change out of my sweats.

I also have found great encouragement through online support groups.

When a child with special needs comes to us, I search online for support groups associated with the child’s conditions and find a wealth of information and listening ears—treasures hidden in the hearts and minds of a group of people I may never meet in person.

I have also cast aside my expectation of every time of socialization involving no kids and being able to leave the house.

I have been known to invite friends over for a cup of coffee while kids nap or to the park to stand and talk while we watch the kids play.

 

Lean on your faith

For me personally, my faith is what carries me day in and day out.

On days when I have hit rock bottom, I find the strength to take one more step in the knowledge that all that I do is for a greater purpose far beyond myself.

On days when I know that no human eye sees all that I do in a day and no heart understands how lonely I feel, I repeat the phrase, “His (God’s) eyes are on me.”

I believe that His eyes are on me, even if no one else’s are, as I love my children in the hardest hard--giving bath after bath, cleaning up vomit for the fifth time in a day, administering medications and treatments and tube feeds, barely surviving after yet another sleepless night, cuddling little ones after seizures, and wondering what the future holds.

I am never truly alone.

 

Reach out First

I believe one of the greatest means of combatting loneliness is to never stop thinking of others before yourself.

It can be easy to sit and wait for someone to be the first to initiate contact or support and I have done this far too often.

If you feel lonely, allow it to spur you on to reach out to someone else.

Choose to be the friend first.

I like to think of what I wish others would do for me and then I choose to be the first to do that for other people—send the first text, offer the first invite, send the first encouraging card.

There is something powerful in not being the victim of loneliness but instead allowing it to be the tool that places you in the shoes of others as the agent of change.

 

Being the caregiver for someone with special needs is a hard, amazing, excruciating, beautiful role.

It is unfortunate that it often times is a lonely role as well.

But perhaps, as we bravely take on day after day, loving unconditionally, rejoicing in the victories, rising from the setbacks, and revealing the incomprehensible beauty of those who stand out, someday, the world won’t be able to resist leaning in with open arms and hearts.

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