Coping with the Social Isolation of Having a Child with Special Needs

As early childhood professional and foster parents, we understand the importance of connection. But when we welcomed Little Monkey, with his challenging sensory-seeking behaviors, our understanding of connection shifted. The daily interactions we took for granted began to fade, replaced by a sense of isolation. This post explores that experience and connects it to the broader reality of caregiving for children with complex needs.

Losing the Everyday Connections

Before Little Monkey, our lives were woven with countless small social interactions. Sunday lunches, girls’ nights, church gatherings, school events, casual errands, gym visits, and family holidays – these were the threads of our daily lives. But with Monkey, those threads began to unravel.

Suddenly, every outing became a risk assessment. Is a meltdown worth it? Will others judge? Will he be safe? The fear and constant vigilance created a barrier.

Here’s what slowly slipped away:

• Sunday lunches with friends.
• Girls’ nights out.
• Church gatherings.
• School events.
• Phone calls.
• Errands.
• Gym visits.
• Family holidays.

It wasn’t just the loss of big events; it was the loss of the casual, everyday connections. I felt like a bad friend, out of touch. Talking on the phone was hard. Traveling was harder. Meeting up with friends felt impossible. Even the nursery at church, once a source of community, became a place where I felt alien, surrounded by new moms with typical children.

“it becomes hard to connect when it comes to parenting because my experience with parenting is vastly different than those of my neighbors and friends with kids. While other kids my child’s age are attending ballet classes and are learning how to ride bikes, we’re working on speech and dealing with epic meltdowns. The last thing we want to be is a Debbie Downer, but this is our life, these are our struggles, and when you have a child with special needs, they are usually out there for the world to see… but we encounter this every single time we leave the house with our kids. The disapproving looks and unsolicited advice alone can be reason to socially isolate.”

Ross, S. (2020, April 27). The social isolation of a special needs parent. Learning Beyond the Spectrum. https://www.learningbeyondthespectrum.com/beyond-the-blog/2020/4/27/the-social-isolation-of-a-special-needs-parent

Research and the Reality of Isolation

What even is Social Isolation?

Summary of Key Points from WebMD Mental Health Resource Center.

• Social isolation is defined as a lack of contact between an individual and society and can be either apparent or perceived.
• Loneliness is an unpleasant emotional response to perceived isolation.
• Social Isolation is associated with worsening of both mental and physical health problems.

Research confirms our own experience.

“Parents spoke of detachment, fear, and stigma from others, as their children were perceived to be socially and medically different because of manifestations from a rare NDD. …This can lead to further isolation for families socially and personally.”

Currie and Szabo, 2020.

Research validates the experiences of our kids, too.

“A 2002 study involving interviews of parents of children with disabilities in Israel revealed that while parents were certainly worried about the affected child, they also worried about the social lives and peer interactions of their other children, including the extra burden that might fall on the siblings as a result of their disabled brother or sister. …Some parents explained that certain friends asked that the child with disabilities not be brought to social events and that their other children tended to not invite their friends home.”

Baumgardner D. J. (2019). Social Isolation Among Families Caring for Children With Disabilities. Journal of patient-centered research and reviews, 6(4), 229–232. https://doi.org/10.17294/2330-0698.1726

These studies reveal that social isolation leads to feelings of being trapped and resentful. We need social interaction, but the right kind.

All Parents Struggle, Right?

“Parenting is hard work, and parenting a child with mental health issues is exponentially harder. You’re almost certainly putting in more effort than any other mom or dad you know, yet your kid may still be at risk, struggling, or making less progress than her peers.” 

Attaway, 2024. Preventing Parent Burnout, Childmind. Attaway, J. J. (2024, December 11). Preventing Parent Burnout. Child Mind Institute.

Preventing Parenting Burnout

“Experts note it includes consistent self-care, establishing a strong support network for yourself, and having a trustworthy therapeutic team for your child. Another piece of the puzzle is learning to tap into one of the most powerful motivators on earth: your love for your child.”

(Attaway, 2024). Preventing Parent Burnout, Childmind. Attaway, J. J. (2024, December 11). Preventing Parent Burnout. Child Mind Institute.

This couldn’t be more right. It took work. It took work on our part and on the part of our friends who saw us struggling and to whom we asked for help. We said we are lonely and they said we want to help you. Let’s fix it. Once we realized how to include more opportunities for friends, we felt more connected.

We had to be intentional about reconnecting:

• Being intentional to scheduled social time.
• Putting little ones to bed early, and had friends over for a late night to play card games at our house.
• Ensuring our other kids maintained social lives even if that meant their friends didn’t come over to our house as often.
• Child-friendly places for outings.
• Taking turns attending school function duties, attending the band concert and sitting with a group of other mom friends might have been the highlight of my week.
• Carefully chosen girls nights out… My mantra “is this worth using my get out of jail free card?”
• Phone calls in quiet moments alone in the car.
• Use text and voice notes quickly for in between caregiving duties.
• Use Bio parent visitation hours for peaceful coffee shop hubby time.
• Sending handwritten thank you notes made me feel connected to our friends even if I didn’t get to see them.
• We figured out that the Introvert needs socializing too, and the extrovert needs some alone time occasionally.

A Call for Understanding

For me, the isolation ended when Little Monkey left. But for many caregivers, this is their permanent reality. Share your experiences and thoughts in the comments.

Card Games to Play After the Kids Go to Bed on Amazon

References

• Attaway, J. J. (2024, December 11). Preventing Parent Burnout. Child Mind Institute.
• Baumgardner D. J. (2019). Social Isolation Among Families Caring for Children With Disabilities. Journal of patient-centered research and reviews, 6(4), 229–232.
• Currie, G., & Szabo, J. (2020). Social isolation and exclusion: the parents’ experience of caring for children with rare neurodevelopmental disorders. International journal of qualitative studies on health and well-being, 15(1), 1725362.
• Ross, S. (2020, April 27). The social isolation of a special needs parent. Learning Beyond the Spectrum.
• WebMD. (n.d.). Mental Health Resource Center.