Tuesday, February 23, 2016

Battle Fatigue - Special Needs Style

In recent days, an article about Special Needs Battle Fatigue went through my facebook feed. Today, an article about obstacles to attending church with a child with special needs went through my feed, and one of the factors listed is fatigue.
Fatigue was a common parental characteristic cited as preventing inclusion of a child at church. Many parents indicated a strong desire for a church community but, as one put it, because of our child’s needs “we have not had the time or energy to seek-out and prepare (educate) a new spiritual home for ourselves. Therefore, we do not attend regular weekly services anywhere, as much as we could really use the support and spiritual community.”
The part of the quote I chose to bold, “... we have not had the time or energy to seek-out and prepare (educate)..." smacked me right in the face.

Everything is a big job, a lot of work, a battle. Not just church. Church is one venue in a list of venues that at my house include the baseball field, the concert hall, school.

She's my kid; she's my responsibility. I get that. But the constant and endless advocating is challenging. I get tired.

I plan minute to minute all day, every day. What if she is overwhelmed at the warehouse club by something new or unexpected and I am not able to complete my shopping list? What items will I try to get now and what items will I leave for later? Can YOU imagine the uncertainty of never knowing if you'll get to the grocery that day or if you'll be able to get everything on your list, depending on how your child's nervous system is working on any given day. Can't imagine it? It's like never knowing if or when someone is going to yank the rug out from under you and that is horrible. I'm always on edge, prepared to abandon plans.

No single grocery store has all of our allergen free needs. I shop endlessly for allergen free foods. See next item:

Food. Is food at so many events necessary? Can't we have some events without food? Or give me an option to an attend without paying for a meal my kid can't eat, although I still have to prepare and bring a meal for her, which is a burden.

The bank closed its drive through option. I have to go inside, now, and that throws a monkey wrench into plans because it means another stop, another get out and go inside errand. There are days when going inside the bank is one errand too many for my girl, so that task doesn't happen.

There are so many things we can't anticipate in first time events, loud music, loud noises, not enough seating, no place to retreat when overwhelmed, gluten-and-dairy laden food and treats. Church is one of the worst offenders for noise, crowds, and food, and inflexibility.

I find that some churches will help a family out on Sunday mornings, but not Sunday night or Wednesday night or during adult choir rehearsal so a parent may sing. That's not helpful.

When I didn't like the content of teenage Sunday School lessons for a teen w/ developmental delays (sex, drugs, cheating, dating) and asked for something else, with a very specific, concrete suggestion (allow her to be a helper in a 1st/2nd grade or 3rd/4th grade class), I was told, "great idea!" and ignored. I tried twice. I gave up. I'm tired. We've been staying home for more than a year, now.

When our firstborn graduated from high school, trying to get the church to work with us so that our entire family could attend the graduation recognition luncheon was a nightmare. The person in charge would not answer my questions, would not work with me, but would work with a family who had been at the church longer. It is hurtful, annoying, and discouraging when you'll make accommodations for the older family while putting off the newer family.

We're tired. Exhausted. We need others to step up and help us out, be our village.

Sometimes, it's easier to stay home than to educate and try to pave pathways which is especially the evil in the lesser of two evils when it means the family does not have a church home or one one parent is  missing a sporting event or performance of one of our other children.

No comments:

OnePlusYou Quizzes and Widgets

Created by OnePlusYou -

Stat Counter