The Mental Load of “Getting Help”

48 Pages.

I just hit submit on another renewal form, ensuring that my autistic son will get some of the help he needs this year. The document that I spent all year compiling, and carefully presenting according to this month’s rules of reporting (it changes every few months, it seems) was 48 pages.

Last fall, a different benefit decided that they would no longer provide their current clients with support until the child was reassessed by a psychologist to make sure they were still disabled. To make sure that the permanent, genetic, neurodevelopmental disorder my son has had his whole life, and will continue to have for his entire life, is still there. The parental forms for that screening were 35 pages long, and the appointment took an entire day. At the end of it all, we received a phone call, happily telling us that we did indeed still qualify for benefits–a total of $30. They then had the audacity to lecture my husband on the phone, reminding him that this benefit should be used for its intended purpose, and that it wasn’t just “spending money” for us to have fun with. Don’t worry Sir, we will not be having fun with the money that doesn’t even cover the time off work the renewal of this benefit cost us!

Just another example of the unseen work, and the mental load that special needs parents carry.

Blogger and author, Jess Ronne, shared another example of this extra load on her Facebook page last year. When her disabled son turned 18, she was required to register him for the USA military draft. She explained that he was both physically and intellectually disabled. Shouldn’t he be exempt?

Well, of course he would be exempt from military service, was the answer, but first she had to complete all the paperwork of registering him, and then she could apply for and complete all the additional paperwork of applying for his exemption. You know, in her free time as she cares for an 18-year-old that still needs to be spoon-fed, wears diapers, and sleeps in a custom crib-like bed with a baby monitor for his safety.

I’m not a politician, but wouldn’t it have been easier to cut to the chase and only make them fill out the second document?

(Follow Jess Ronne, HERE and HERE)

It seems to me that the powers that be really love giving extra work to people who are already overburdened. And you know what? I really don’t have an answer of how to fix it. It is certainly not unreasonable for there to be an application for grants and services, yet somehow these application processes make the help we need so inaccessible and out of reach. We search high and low for help, jump through every hoop, and finally get our turn at help… to learn that we qualify for $30 and no actual/tangible/practical help. Rinse and repeat.

Another autism mama that I fiercely admire, Kate Swenson, wrote a blog post that sums up the struggle so perfectly. She writes about the saying we parents hear over and over: in a plane, they tell you to put on your own oxygen mask first.

I encourage you to give this post a read:

Putting Your Mask On First

(Follow Kate Swenson HERE and HERE)

The mask seems impossible to get.  
Or it’s not available in my area.
Or they politely add me to the waiting list that has a 9 month wait.
What if that mask is buried so deep in a pile of paperwork and phone calls that it almost isn’t worth it?
Of course it requires referrals and proof and not one, but two evaluations.
What if you can’t keep missing work to do these things?
Or what if I am not low income enough to get a mask?
Or my son’s disability isn’t quite severe enough?

Kate Swenson

Whenever we get the courage to tell someone that we are tired, or that being a caregiver to a disabled child is challenging, or that we never sleep because our child needs around-the-clock monitoring, we hear the same thing: put on your own oxygen mask first. Just take a break, is the answer. Take a nap. Do some yoga. Take care of you. Unfortunately this dismissal of what we are saying misses the mark comically.

When a child needs 24/7 care, when exactly are we supposed to be taking these naps? Obviously, we need a respite caregiver of some sort, but how do we afford that? Oh, we need a grant. That will be another 100 pages please. Fill them out in your spare time. Then, the program gives us the grant, but doesn’t supply the respite workers. We need to advertise for them. Interview them. Do background checks on them. Verify that they are safe and qualified to care for our vulnerable child. You know, in our free time. Then we need to figure out what this respite will look like. Ideally, we the parents would stay at home in our beds and sleep, but, since many disabled children don’t travel well or do well with changes in their routines, that’s not an option. The best choice is to have the respite worker come to our home. But then, where do we go to get rest? Get a hotel room to sleep in? Hold it right there partner, the grant only covers the respite worker’s wages, not “vacations.”

Trust me, we would put our masks on if we could. But “oxygen masks” take the form of 48-page applications, waiting lists, and more. There are no “oxygen masks” falling from the ceiling right in front of our faces. Oxygen masks are buried under red tape so thick that many of us suffocate before we can wrench the mask free.

I also want to encourage you to give this documentary a watch. It just begins to scratch the surface of what it means to be a parent caregiver to a disabled child, but it’s a start.

(Find a virtual screening HERE.)

I know, I know, I just wrote a whole blog post last week listing the ways you can get autism support in my province. Believe me, I am not ungrateful. But I would like to point out that I would never have found any of these services without the help of a kind social worker who introduced them to me, and helped me fill out the application forms. As I said last week, most families don’t even know these programs exist, let alone where to look for them and how to apply for them. And then… and then there’s the paperwork. Ongoing. Forever proving that our disabled child is still disabled. It feels a bit like Oliver Twist: Please sir, I want some ‘ore.

Parent caregivers are tired. That’s all I’m saying. We’re tired, and we could use a friendly face, and some rest. We could use someone who cares. And how can you care if you don’t know?

Community centers, community service groups, places of worship, municipal governments, family, and friends: I am telling you right now that we need you. I am telling you that there are people in your community being under served and under supported. I’m telling you so you can no longer say, “we didn’t know.”

Now you know. Now the question is, do you care?

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