If you parent kids with disabilities, chances are you’ve felt isolated at some point. You might even feel isolated when surrounded by other parents, who you have little left in common with.
Unfortunately, this is a reality for many parents of kids with disabilities. We can become isolated for a number of reasons, spanning from having to stay home to protect a medically fragile child to social invitations that eventually stop after having to cancel too many times.
So what can we do to combat isolation? This is a conversation I’ve with my husband, who is a mental health counselor. A while back, we sat together and brainstormed ways for me to connect with myself and others. Since I know I am not the only parent struggling with isolation, I reached out to other parents in our Mighty community to share what has helped them.
Here’s what our parenting community shared:
1. Join an Online Community
There are great online communities that help connect parents who have kids who share the same diagnosis. At The Mighty, we have an app that makes this super easy. We share thoughts, ask questions and share adorable photos of our kids. Here are a few of the parenting-related communities you can join on The Mighty:
“Finding a strong online community such as Down Syndrome Diagnosis Network (DSDN) has been critical to my [mental health]. The ability to chat and get support from other parents who get it without having to worry about whether my kid will be healthy enough to actually attend a physical event is huge.” — Shawna C.
“I can’t get out much between work and caring for my kids, so social media, texting, FaceTime and phone calls are the greatest things for me. Having that connection is a lifesaver. As much as many of us hate to admit it, Facebook is one of the greatest things for parents [like us]. ” — Ash B.
2. Attend Meetups or Disability-Related Events
Chances are there are meetups in your area designed to connect people in your community. If you are not sure where to start, contact your local Arc and ask what is available near you. The people who join these organizations or participate in events are the ones who get what you are going through.
“Special Olympics. There, I am not isolated. There, I’m just another mom. There is laughter, fun, love, support, no judgment. I have friends, my son has friends, my two typical kids have friends there. When I found this [community] it made me realize I didn’t even have this [connection] with the moms of my two [typical kids]. We love our Special Olympics family!” — Brandy K.
3. Invest in One Relationship
You may not be able to keep up with a group of friends, but perhaps you can invest in one relationship. Pick one friend you know you can count on and focus on that relationship. It’s OK if most of your side of the friendship revolves around texts or angry emojis about IEP meetings. A good friend loves you regardless of whether or not they can relate.
“Find a friend who gets it. It takes time and sometimes isn’t even up to you, but as much as it depends on you, befriend someone you can talk to.” — Meredith D.
4. Consider Adopting a Pet
Pets can make us happier. My kids begged for a dog and it turns out I was the one who really needed him. He is my shadow. He follows me around the house and I joke that he takes me on walks. He is in tune with my emotions and is basically my therapy dog. He does wonders for my mental health. Not to mention, my kids adore him. He is a true friend to us all and loves our family unconditionally.
Mighty contributor Shirley Valerio wrote a great post detailing eight reasons why having a pet is great for your mental health. Her number one reason? “You always have someone to talk to.”
If you aren’t ready to commit to adopting, ask your local shelter about fostering. It can help you determine whether or not you and your family are ready for a pet. Plus, it’s a great way to give back.
Journaling may not keep you from being isolated, but it sure helps to get your emotions “out there.” Several years ago I took a writing class for moms — it was the counseling I didn’t know I needed. It helped me sort through the many emotions I was dealing with at the time and I ended up connecting with the other parents. Now, I journal on my own. Mostly, I write the things I am thankful for. It helps me look at the positives in life and changes my outlook.
Expressive writing has documented benefits. Because it focuses more on feelings than events, it can help you process traumatic, stressful or emotional events.
Mighty contributor Jennifer Degl wrote:
My NICU journal became my weapon against misunderstanding, as well as a tool to help me heal. No one anticipates his or her baby being admitted to the NICU, whether it’s due to premature birth or another major health issue. NICU parents are in a state of shock and don’t have the clarity needed to analyze and interpret the onslaught of medical jargon presented to them, as well as the decisions they’re asked to make.
Volunteering helps you focus on how you can help others and can foster community. You can find volunteer opportunities within the same organizations you are a part of. If you are a church type of person, you can also find volunteer opportunities at church. Programs like VolunteerMatch can also help you find volunteer opportunities nearby.
7. Invest in a Hobby or Activity
Having something to do that is not related to parenting can be good for your mental health. Classes or group activities can also help you make new friends who share your interests.
“I teach fitness, which makes me feel less isolated. I encourage parents to find one thing that they love doing and do it at least once a week to rejuvenate.” — Karren R.F.
“I like to go to book club and do sip and paint paintings. It helps me relax and gives me some socialization just for me. Both my boys are my world, but I need those little breaks to feel like me again.” — Allison M.
8. Join a Support Group
Support groups can be a great source of encouragement and connection. When my daughter was born with Down syndrome, a nurse told us about a local Down syndrome organization. Often times, medical professionals have a list of support groups for parents of kids with disabilities, rare conditions or significant medical complexities. Social workers or case managers can also help you find these groups.
“Support groups are amazing — myself and another mum co-founded the first Australian support group for kids who have suffered a stroke. My mother’s group, in particular, has some of the most non-judgemental kind and caring women I’ve ever met! It’s really important on this journey to get your tribe just right!” — Dee B.
Therapy can help you process and make sense of any overwhelming feelings you may have. Remember, there is no shame in asking for help, and taking care of you means you will be able to take of your kids.
“Therapy has taught me coping skills and challenges me to see things in a different way. ” — Michelle K.
If you are looking for affordable options or providers that don’t require long drives, this list of affordable online therapy options may help.
10. Take a Break
We all need a break once in a while, especially with the added responsibilities that come from caring for a child with disabilities or complex medical needs. We are not just parents, we are also carers. Many of us help our kids with tasks that most peers their age don’t need help with. With these added responsibilities and involvement, it is especially important to take a break in order to avoid carer burnout. Taking a break makes us better parents. If you do not have family or friends who can help, contact your social worker or case manager and ask about respite workers. Many state grants, waivers and even Medicaid cover the cost of respite workers.
“Having a trusted babysitter to give you a break once in a while and a trusted friend to talk to will help tremendously.” — Summer M.
“I recommend using respite care if you have it available. It provides my hubby and me with a few hours here and there to reconnect and have adult conversation. Plus, my kids love all the fun they have with the respite workers.” — Danielle W.H.
For most of us, our “tribe” consists primarily of other parents who have kids with disabilities. When we are together, we find a commonality of experiences that we may not have with those who parent “typical” children. Parents who have kids with disabilities “get it” in a way that others cannot. My closest friends either parent disabled kids or are disabled themselves. Because I have them in my life, I don’t feel so alone knowing they are only a text or call away.
As Mighty contributor Kathy Hooven said, “Find. Your. Tribe.”
What have you done to combat isolation? Let us know in the comments below.