DISABILITY FATIGUE

Are you walking around in a haze? Are you constantly stressed? Angst-ridden? Anxious? Tired? Irritated? Sad? Annoyed?

You might have DISABILITY FATIGUE.

This isn’t an actual medical diagnosis. It’s a term that entrepreneur and advocate Cindy Liu highlighted in a recent TEDTalk. (Watch it here: https://www.youtube.com/watch?v=mr_Fff6ZiXI)

As any caregiver to a child with a disability can tell you – this particular struggle is very real. And right now those symptoms are exacerbated because so much of the assistance and accommodations that generations have fought for is on the chopping block. Things that allow people with disabilities to be valued and contributing members of society are under threat. The healthcare debate in particular is exhausting, and it seems we’ve only just begun.

Listening to Liu brought me some relief, not to the fatigue, but to that constant guilt that hangs over me. Her words are a reminder that we are not alone.

This malaise we feel is not easily understood. It sets in after that first, overwhelming mourning period ends. We don’t even know it’s there. It’s just that – we’ve lost ourselves.

Perhaps we’re in denial about our child’s level of care. We think this amount of stress is just part of being a parent. We aren’t adept at handling everything. It’s all in our heads.

It’s not.

My oldest son Arlo was born in 2010. Beautiful, dreamy pregnancy. Then he stopped moving. Emergency C-section. During my painful recovery the doctor told my husband and me that he suspected Arlo had Down syndrome.

With those words, everything changed. Innocence lost.

That idyllic new parent experience was taken away. We stayed by his side in the NICU for two weeks until he could breathe on his own. Our down time was spent figuring out what was next. And we haven’t stopped since. Do we even know what “down time” is anymore?

When I counsel parents on advocating for their children, I remind them that our normal is not normal. Most people don’t have this amount of stress in their lives. We are so accustomed to doing all these things for our children that we don’t realize how difficult it is. This is not a hardship. We love our children. We just do what is best for them.

But we owe it to ourselves to recognize it’s not always easy. From the beginning of our child’s life we’re set on a different trajectory than most parents. Let’s take a look at just some of the ways our normal is different from that of our peers:

  • Extended NICU stays
  • Multiple, constant health concerns
  • Early intervention (While wonderful, it is intrusive. It’s jarring to have so many different people in and out of your home on a regular basis; especially when you should be enjoying that new baby.)
  • Multiple therapists
  • Specialists on speed dial
  • Special equipment
  • Feeding issues
  • Behavioral interventions
  • Reward charts
  • Visual schedules
  • Timers
  • IEPs
  • The alphabet soup of jargon and acronyms that is essentially a learning a new language
  • Searching for specialized clothing
  • Needing help to care for your child
  • Constant meetings to secure help in caring for your child
  • Mounds and mounds of never-ending paperwork. For school, for camps, for doctors, for crossing the street. So much paper!
  • Advocating for accommodations so your child can attend events and clubs with friends
  • Elopement
  • Orthotics
  • Walkers
  • Wheelchairs
  • The full time job that is setting up your child’s appointments, paying medical bills, arranging camps, booking therapy sessions
  • Building extra time into everything you do to ease transitions
  • Attending seminars, trainings, classes to help your child learn basic things like dressing, potty training, communicating, reading, math
  • Finding time to try to teach your child these things
  • Feeling like a failure because you never find time to follow through on these things because you are so darn tired you just go to the playground instead
  • Feeling awful because you aren’t just letting your kid be a kid.
  • Advocating on the local, state, and federal level to ensure your child has the supports he or she needs to live life to the fullest.

Looking at that list seems overwhelming now, but it didn’t occur to me that these things were out of the ordinary until I had my second child. I didn’t have to take him to a different doctor every other week. I was in shock at how he could do things on his own. I didn’t have to teach him how to roll over. I didn’t have to work with him on talking. He just did it. As Arlo’s speech therapist so elegantly put it, parenting is “supposed to be easy.”

Disability fatigue. It’s real. Accept it. Own it.

The reality is – as tired as I am, I wouldn’t change a thing about my son. He makes everything better. I am better because of him. I know amazing people because of him. He is not the problem, nor am I. When the fatigue starts getting to me, I think about how it must feel for him to go to another doctor. How much does it suck for him to see his friends playing on the playground while his mom is driving him to therapy? How unfair is it for him to go to multiple specialists in the same day?

When we start dragging more than usual, it’s time to reevaluate. How beneficial is therapy? Can we postpone the next sleep study? Are we eating enough ice cream?

There can never be too much ice cream. Ice cream makes everything better.

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