The Disability Dance

I'll tell you what drives me crazy. That every year we need to prove Elias is still disabled enough to deserve services.

His three main disabilities--cerebral palsy, autism, and visual impairment--are lifelong conditions that do not really change from year to year. So why the mountain of paperwork? Why the call from the State that they need medical records, therapy notes, hospital stays, a 24 hour log, and oh, by the way we need it yesterday.

As if this whole parenting a child with disabilities isn't challenging enough, but then you add all these bullshit layers of bureaucratic process.

And sure I'm asking for help, but don't you dare call it a hand out.

Uncle Sam is not knocking on my door with hundred dollar bills in his pockets. He's making me dance on hot coals for a little help with medical bills and the occasional respite from constant care. I'm trying to keep my family from going bankrupt and keep myself from strangling my son. Call it welfare and cast me in the pond of government grubbing bottom dwellers, but don't call it easy.

Don't call it free. Describing in detail all of Elias's challenges falls on an opposite pole from freedom.

I have two Masters degrees and the endless processes bewilder me. The paperwork overwhelms me.

And then there's phone calls like this from my son's doctor's office: "Um, we got some paperwork from the State and Dr. Tulip wanted to know how you would answer the questions."

"Sure, I can help."

"So, the first is do you think this child needs institutional care?"

And scenes from One Flew Over the Cuckoos Nest flash through my mind before I answer. "Well, no but that's because we take care of him."

And yet I know Elias couldn't survive on his own-- but I don't let my mind travel too far in the future or into that what-if world where something tragic happens to me and Nick.

Or at least I try to retrieve it quickly when I travel there.

Return to the moment where every morning I change my ten-year-old's diaper, put his thick socks over his curled toes, remind him to eat his cheesy sausage as I answer his repetitive questions about the Alyeska chairlifts.

Where I often turn away from my son, hold my coffee cup with both hands, like a prayer, and exhale. But I always turn back towards my boy.

Always.

This is our life.

And I'm not asking for much, but I sure wouldn't mind a break from dancing through all these hoops.

Comments

[Greta]

In our capitalist society, any services that are not profit-producing are handled in such a way, to the point that so many of us patriotic Americans think that social services are a drain on society. How warped a view is that? That we should not nurture our own for fear that it will suck the life out of our great nation? So whether we have loved ones, or charitable organizations, who need support, we must go to great lengths to prove the support is merited and worthy. I guess it's a better system than many other countries have, but it's often a maddening process nonetheless, especially when the bureaucratic paperwork is many times redundant and so inefficient.

You and Nick are Elias' heroes.

[Shelley]

I find dealing with insurance companies daunting enough just for my little "typical" family. I cannot imagine what families with real and constant needs go through. My wish for you is fewer hoops and a government agency that actually keeps track of what you send. :)

[Sara]

Amen. Says the atheist ;)

[Liz]

One of the most humbling moments of my work as an early intervention physical therapist was spending a home visit not working with the severely disabled toddler, but helping her 15 y/o mother (whose family did not speak English) figure out the Medicaid paperwork that must be renewed annually. The paperwork that says, in giant letters, NO ONE CAN HELP YOU FILL THIS OUT. Literally. What?! We filled out what we could, made lists of which doctors to call about what dates on a torn grocery sack, what things to ask her 18 y/o sister-in-law to help with, and which hospitals to ask for medical records (for which you must pay...don't get me started). We clearly stated what Mom had to do before the next visit, and I went back to the office and made her a binder with dividers labeled for each service her child received, then helped her file stuff in the binder at the next home visit. Like Elias, this is a child whose condition would not be changing significantly. You won't find these tasks listed anywhere under my job description or taught in any masters program, but they are critical skills to working with families. There's got to be a way to make this better, right? That's my plan post-retirement, to start some sort of paperwork clinic for parents of children with special needs--come any Saturday between 10 and 2 and get help with the neverending paperwork, including a grant program to fund medical records requests! Childcare provided! This will be run concurrently with my aquatic therapy program for seniors and families with children with special needs, taught by therapists and therapy students. I haz dreams. One day they will happen.

And you? You are doing a crazy hard job and doing it well, and not pulling any punches about it. Thank you.

[Christy]

Liz, I see a huge market/need for your retirement ideas and love your vision. Thank you for sharing your story of dealing with the paperwork jungle it truly is crazy-making. I'm still waiting to see if we will be approved or if we'll have to drag ourselves down a whole other trail for funding. Its exhausting. And English is my first language.

[s.e.]

The hoop dance is crazy making:( My daughter is turning 18 this year and we are trying to figure out the new hoop dance to get her services as an adult. Supposedly we have done the most difficult first, convincing revenue canada, that was easy her dr. filled out the paperwork we needed, but our dr. is retiring in may:( 2nd time in 5 years that we losing our family dr.
the hoop dance is harder when cuts mean the hoops don't stay still.
I have a master's degree as well and have been a parent for 28 years.
it is so demoralizing and gut wrenching having to focus on one's child's deficits instead of their strengths.