Is Anyone Home?

Websters definition of Isolation is: to be apart from, to be cut off from human beings and usual associates. 

What this definition lacks is that there are multiple levels and types of isolations. And many of these are experienced by families in the special needs community. There are physical isolations, emotional isolations, community isolations, and relationship isolations. In this last year having been through the pandemic, and even as it’s still going on, just trying to navigate the societal norms, we have added layers of complexity as special needs parents. It has become even more profound as the concept of going out in public (which is already difficult enough) became even harder with the fear that our vulnerable children could easily succumb to the virus. So our first reaction as caregivers is to protect, and we further isolate.

I mentioned the different types of isolation. The most apparent is physical isolation. We close ourselves off from friends, family, our communities. We go into hiding. This in the pandemic was a fight or flight moment. It wasn’t purposeful…it was necessary in our eyes. But even before the virus, special needs parents isolate their families in physical ways all the time, either by their own will or that of circumstances beyond control. When we returned from Hannah’s recent hospitalization the shear amount of equipment and complexity in her care, made it even more of a difficult task to move her…anywhere. Going to the bathroom to bathe her was difficult enough, how could we take her out in public? As parents the need to protect our kids is primal. It’s an instinct. Even with parents with “typical” children that drive is there. Inaccessibility, difficulty, timing all lead to physical isolation, we just can’t make it work. With this pandemic it has become worse. Even just going to the park is seen as a dangerous activity. So we are trapped in our four walls, cutoff from what, if any, support system we may have had.

Emotional isolation is just as it sounds. We may be physically present, but our emotional state is separated from what we are physically doing. It is that feeling of being alone even as we are surrounded by our nurses, families, friends. We may seem connected but we aren’t really emotionally nurtured or feel seen. This is where I might hurt some feelings. We love our family, but sometimes their inability to connect with us and see us for where we are. To fail any attempt to understand what it takes to care for Hannah, or to engage with her like any other child. It pushes us further away instead of us feeling supported and part of the family. We feel emotionally isolated when family, friends, and community look at our family with pity, rather than empathy and understanding. And it happens constantly. It looks like: not wanting to bother us, not including us in plans, not stopping by for a visit even when you are in town. When you are in our home, not engaging with Hannah, not wishing to participate in her care. Not wanting to learn about who she is or how we do the things we do. So even as you are present physically there is no emotional connection, no understanding. We won’t say anything. We won’t argue it. We just stop trying….and we feel alone

Community isolation is just that, we are all part of a community Many special needs parents, myself included, avoid uncomfortable interactions by simply not putting ourselves out there. We avoid the awkward stares, the endless questions, and the pitying looks, by simply not being there to witness them. I don’t think people realize how marginalizing it is having a kid with severe medical issues, but on top of that physical deformities or apparent disabilities. Part of it is jealousy, I would give anything to be able to play with my little girl the way I see you play with yours at the park. I am sad, that as a father, I will never get to teach my daughter how to ride a bike and give her “pony rides.” So, seeing people engaged like that, breaks my own heart because I miss that. I can’t help that. Friends and well-wishers make attempts to invite us to activities, but many our child can’t partake in…or we intend to go but Hannah has a bad day as we are fixing to head over. So, after a while, we stop trying. We retreat to safety…we isolate. There are not a lot of outside groups available for special needs parents, its not like there are wheelchair bound playdates being set up all the time. We don’t have the broad range of child care most parents do, so even going out as adults is difficult, if not impossible. The light at the end of the tunnel has always been we have an online community. People living our life with us, albeit in Indiana, Texas, Arizona, Massachusetts…but we have common ground. It feels less lonely.

Relationship isolation is that separation from sense of self and your relationships. You are no longer dad but “caregiver” no longer mom but “nurse”. We have a complete disconnect with our own role. We are husband and wife, but we live two different lives. Our 24/7 is focused on Hannah’s care and not for each other. We pass like ships in the night, sometimes just too tired to put forward the effort of our relationship. Communication breaks down. Everything is routine. You can live in the same house but be isolated from one another. Divorce rates are high among special needs families. It is a hard life, it is non-stop, and it requires energy and time that just aren’t there all of the time. I think for it to work, you have to have that resilience in you, that ability to pick up and keep going, even after set back after set back. I see many dads flee from the life because they can’t handle the support needed by their spouses. Because of the above isolations, our wives need our attention when we are present. We are what keeps them sane. We are the only ones that can save them from that isolation, and for Dads our wives are that for us. But I feel many dads see it as a bother that their wife wants their attention after a day at work, or they can’t cope with a schedule that gives them no days off. Sometimes the only interaction with a human my wife has had all day is an insurance agent or a DME (medical equipment) provider…that makes for some quality conversation I tell you what! They need the break from monotony. For years I slept in my bed alone, as Shelly cared for Hannah in another room. We were literally feet apart, but we missed each other. 

As humans we have an unconscious need for connection to other humans. For our relationships with friends, family, and community. With a special needs child these needs are put to the test. But not all hope is lost. We have found a lot of success as parents, in making time for each other and forcing ourselves to get out of our four walls. We may try self-care activities or to just go be with family. It takes a lot of effort, but we do it. We have also taken to making the best out of our situation.  We Build activities around our known abilities, and if people want to show up…they do. We are OK as long as people try.

We grow comfortable in public by just doing it, and Damn what anyone thinks, or the stares we get. That’s on them, not us. You have to have a thick skin sometimes for this. And if you have a “typical” child please hear me: We would rather you engage with us and your child, and let them ask their questions, ask yours as well. Be curious rather that protective and dismissive. Rather than telling your child “Its rude to stare” and hurrying them away, have them come up and interact with Hannah. We will tell you our story, Hannah will enjoy some attention. And the child will learn about differently abled children. Don’t force that isolation by turning them away. And If you are uncomfortable with confronting that fear in yourself, you make it worse for your child’s mindset later down the road. There is a stigma around disability, it requires courage to confront. Set the example. The world would be a much better place if every child was able to interact with those of differing ability levels.

As I’ve said above, isolation isn’t just physical separation. If you are a special needs parent, we see you and we feel you. If you are the family of a special needs parent, reach out and check-in frequently…we may not be “present” but it may not be our choice, and showing you care, and want to be involved that is everything to us. And if you are in a community with a special needs parent, be patient, don’t get discouraged when plans fall through, keep inviting us, we will try our best…we want to be included but sometimes life gets in the way…don’t give up on us.

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