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7 Ways Parents of Kids With Disabilities Experience Isolation

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I once surveyed parents of kids with disabilities and asked them to finish the sentence: “The hardest thing about parenting a child with a disability is_____________.”

The overwhelming response was: isolation.

When my kids were little, I tried playdates at a park, but while the moms sat and talked, I had to assist my kids. I was often the loner mom on the playground while the other moms visited sitting on the benches or picnic tables.

We want friends. We need friends. But if our kids are isolated, chances are we will be, too.

It should be no surprise that my closest friends are other parents of kids with disabilities and adults with disabilities. They get it in a way nobody else can, and while I am thankful for those connections, I still have to fight isolation. Chances are you do, too.

Parents of kids with disabilities can become isolated due to a lack of support or connections to programs in their area that offer assistance. Sometimes, it’s the result of a lack of funds. Isolation can also be experienced around friends, at family gatherings, at school or at work.

Here are some ways The Mighty’s parenting community experiences isolation. 

1. Parenting a medically fragile child.

If you parent a child who is susceptible to sickness, you naturally end up having to isolate yourself in order to protect your child.

“We do physically isolate during flu season too, as my child ended up on life support from the flu last year. And yes, she was vaccinated. A simple cold put her in the hospital. People don’t have to keep their kids home, but please tell me if your kids are sick, even with really minor things, so I can keep mine home.” — Jana L.

“Having to isolate my daughter during cold and flu season has caused strain on relationships, as well as simply being too exhausted to socialize from all of the medications, doctor visits, hospitalizations, testing and therapies.” — Amanda Y.

2. At social gatherings that are too overwhelming for some kids with disabilities. 

Some children with disabilities have sensory processing issues, which can make social gatherings a challenge. This naturally leads to isolation.

“I have always experienced isolation. My son is grown now, but it was at its worst when he was young. I felt completely alone. My entire life was focused on [helping him cope] and no one has ever understood other than my children and husband.” — Deborah T.

“It can be [isolating]. What activity can we do where [my kids] won’t be treated as weird? What can we do where I can step in at a moment’s notice if needed? What if we have to leave right away?” — Lisa R

“We are very fortunate to have many supportive people in our life who do whatever they can to help and be there for us. The isolation comes when we are not able to do certain things with others because our child is not able/will not tolerate the activity. Or when we have a hard time finding someone to watch our child because they worry about handling her medical conditions. Or when we are able to participate in a group activity but feel we must be with our daughter helping her, so we don’t get to sit with the other grown-ups to socialize.” — Jamey C.

3. A lack of accessibility and acceptance.

If a place is not accessible, it automatically prevents kids with disabilities — and therefore their parents — from attending. Accessibility also extends to attitudes and a general sense of whether our kids are accepted or not.

“You tend to select activities based on how your daughter or son will be received. Will they be welcomed? Overlooked? Ignored? So I would say you are always anticipating the level of acceptance and appreciation of your loved one… and you decide based on your previous experiences.” — Susie E.

“I have a son who is 13. I would love for him to be more involved in outside extracurricular activities, but what is there? Other parents just don’t get it, their child can play all of the sports [but] mine can’t. It’s hard without anyone to turn to.” — Lena E.

4. Being left out of Parent groups.

Sometimes the invitations for parent groups come, yet many of us end up still having to be 100 percent focused on our kids rather than interacting with other parents.

“My son who has Down syndrome and autism is now 16. It has always been isolating, especially when he was small. The kids would always play on the playground after school for about 30 to 60 minutes while the parents stood aside and chatted. I always had to be right by my son’s side, encouraging him to use the equipment or assisting him on the monkey bars, etc. None of the other moms came over to chat with me, ever. I remember one day being so lonely while pushing my son on the swing (while the other kids could swing by themselves) that I wept as I pushed.” — Rachel B.

5. Lack of understanding when canceling plans.

When you parent kids with disabilities, you learn quickly that plans can change at any minute — be it a medical emergency or a meltdown. Things happen. Not everyone is understanding when you have to cancel plans last minute. Eventually, the invitations seem to stop coming.

“We make plans and plans are canceled [when] my daughter with Downs syndrome is ill, and when she is ill, we always run the risk of needing to go to the hospital. I feel bad for my daughter who is sick and bad for my other children for having their plans canceled. It’s not easy to juggle. Influenza hit this weekend and all plans were canceled.” — Stacie W.

“There was a time when my son had a meltdown at a fair and [it took a while for him to feel regulated]. I had a splitting headache and I had to cancel a playdate with a neighbor and her kids. She was curt when I called her and never spoke to me again! She thought I was being rude. ” — Rachel B.

“I’m lucky my friend group has a variety of needs so I know my children are accepted there. I always worry that some might not get that, ‘we had 3 appointments this week and sleep has been shit. I just want to stay in.’” — Lisa R.

6. Lack of time.

Sometimes, we simply do not have time to do all the things.

“My son isn’t terribly complex medically, but he’s still got 1 million routine screenings every six months. Which are absolutely fine by me, but I work full-time. Between having a toddler, work and the appointments, I’ve got nothing left.” — Jeannie K.

7. People who do not understand.

Sadly, sometimes we become isolated because people do not understand what our lives are like and we get “ditched.”

“Family ditched, friends disappeared, the only people we see are my son’s nurse and his therapists (as a result, we talk their ears off).” — Shayla FW.

“We thought that we would have more of a support network, but people distance themselves from you more than you might expect. We feel very alone in it all. Many don’t talk to us, most avoid us in fear of making him sick, even when they’re not sick, and a lot of the time it feels like the outside world only exists for doctor appointments and groceries. We wish people would ask us all the questions that they have, come visit more, and want to be a part of our lives, but you can’t force that.” — Andria A.

If you can relate to any of these situations, know that you are not alone. We have a community, right here on The Mighty, and we would love to have you. You can get The Mighty app to connect with other parents. Or use this platform to post thoughts or questions using the hashtag #parenting. We are not alone, we have each other.

How do you experience isolation? Let us know in the comments below. 

Getty image by ziggy1

Originally published: March 17, 2019
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