Hooky Part Two

First, I have to say "WOW!" and "THANK YOU!" because yesterday's post about church and mental health generated a whole lot of discussion, positive affirmations, encouragement, love and support.  All of you are amazing. 

Second, after reading everyone's comments I discovered that I inadvertently created a poor picture of our current church. I must clarify. When we started attending our church three years ago this February, there was special needs sunday school support. Things change, it's the natural ebb and flow of life and that is no longer available.

Sure, one of my readers mentioned starting it on my own. I agree, it's something I've thought about, especially since in the last six months, we've not been able to attend church as a family but a handful of times due in large part to the new Sunday school format for Sissy and AB's age group, a format that does not work for them, a format that I've already talked to the children's church director about only to learn he has no answers for our situation. However, the idea of me starting a SpEd Sunday school class still skirts the realities of parenting challenged kids: my daily life is challenged, stressful, unpredictable, filled with violence, rage, crisis and daily therapies. The last thing I want to add to my crisis-filled life is one more responsibility and one more time commitment (because let's face it, leading a Sunday school class is NEVER just a one hour commitment on one Sunday morning).

Having been an educator, I've also tossed around the idea of contacting the clergy and suggesting that we have a panel/forum for leaders in the church for the expressed purpose of educating people about how to understand, support, encourage and integrate families with challenges into the church infrastructure. Another excellent idea but it has become one of those ideas that is just thought about and never acted upon because again, my daily life is challenged, stressful, unpredictable, filled with violence, rage, crisis and daily therapies. The last thing I want to add to my crisis-filled life is one more responsibility and one more time commitment. Thus it becomes a self-perpetuating issue.

That said, I do want to firmly and gratefully reiterate that our church HAS helped us immensely in many different ways.

So what's my beef then?

My issue isn't so much this one congregation, it's the overall misunderstanding of persons within a congregation or within the Christian community at large about challenged people and their families. It's that we don't have a voice within the religious community. It's that our voice is squelched too easily with the ridiculous religious rhetoric. It's that we're forgotten when we don't show up for weeks on end for the simple fact that humans move on, out of sight, out of mind. It's that getting to Wednesday night service is IMPOSSIBLE. It's that getting to just one our of Sunday service often takes an act of congress. It's that attempting to get to all the miscellaneous extracurricular church functions often make our challenged kids WORSE so those functions are often regrettably avoided. It's that churches in general are loud, busy places. It's that seeing so many families with unchallenged children worshiping God stings a little Why God? Why us, why OUR kids? Why this life with no reprieve?

The biggest issue:
Challenged people never stop being challenged and their families never stop struggling to help them in those challenges.

That's the shoe-dropper, right there. I'm guilty of it too so I'm just going to raise my hand and say "yep. been there, done that, didn't realize it at the time but dang, if I haven't at least learned empathy in all of this"

What I'm saying is, church people LIKE to help. It's a rare thing to find someone that attends ANY congregation in ANY denomination that isn't on the outset, a giving person looking for an opportunity to serve. But church people like to help in the ways that THEY want to help. (Again, I'm guilty of this too, I'm not preaching, I'm saying like it is)

Spiritual gift survey, anyone? Right? In what ways can I serve the community and church body? The spiritual gift survey says I'm good at mercy. I should go to hospitals when people are ill. Hospitals make me squeamish. How about I just make a quilt to send to the hospital. Yeah, that's a nice thing to do. I'll do that.

You know what I'm saying. I'm not being rude or snarky, this is what humans do. This is the dialogue we have in our heads with our selves. Come on, don't tell me it's not true, you know it is.

Now let me say this, it's NOT a bad thing to send a quilt to the hospital! Linus Project is an AMAZING project. DO IT! But in the grand scheme of things, how does a quilt help a sick person? What does that sick person REALLY need? Medicine? Prayer? A quilt?

Yes. But they need comfort, encouragement, support. They also need practical stuff. Hot meals for the family still at home. Money to pay unpaid bills because they're in a hospital bed and not at work. Child care. Transport to and from follow up doctor visits. Assistance with in-home care or hospice. Prayer. Time. Fellowship. Camaraderie.

Yes. Most churches can do this and do it with FLAIR! I believe our church does this with flair times ten.

But illnesses heal or people pass away. Then the help is no longer needed and the church people move on to make quilts and hot meals for the next family. Great. Excellent. Fantastic! WAY TO GO! If you or your church do this, you are ON IT!

Trouble is, mental health, developmental delays, impaired persons NEVER GET BETTER. The challenges NEVER GO AWAY. Never. By nature of the illness, the good graces are expired. It's humanness, not a lack of faith or christian belief to get to the point of helping the perpetually needy when you say Ugh. they STILL need help? Wow. This is taxing. This is too much. I have to move on. I need to see immediate benefit from my act of service Again, not dissing anyone, just telling it how it is. So by the nature of living a life encumbered by impairments, you fade into the background time and again, you get forgotten, overlooked, maybe even make people a little annoyed because you're still there, still needy, still, still, STILL...

My ideal help from church isn't a reality, which I accept, but this is what it looks like:
#1 two frozen prepared meals in my freezer at all times because I never know when Sissy is going to spend an entire evening in crisis and prevent me from making a hot meal for my family
#2 someone to come and help me deep clean my home one saturday a month, indefinitely. and if that person wanted to stick around and help me to prep cooking for the week, so much the better because I never know when sissy is going to spend an entire evening in crisis
#3 a team of people that I can call on in crisis that are skilled to assist AB and provide general childcare for WG when I have to sit in the ER with Sissy for 10 hours. a maybe someone to come sit with me on occassion
#4 someone to pop in once a week to process four loads of laundry
#5 a crew to come out once every other month to help The Dad keep up the house and yard work. It's not because he can't do it, it's because we never know when Sissy is going to be in crisis
#6 the occasional financial assistance without having to ask - we just never stop being broke. never.
#7 a team of people that I can call upon to help with homework (they'd have to skilled and patient to help AB and Sissy) or picking up kids when it's one of those long doctor days
#8 people that can help us shadow Sissy and AB at these extracurricular church activities so The Dad and I can have fun too. most of the time we spend our energy trying to prevent meltdowns instead of letting go and having a good time ourselves.
#9 having someone else step up to the plate to run a special needs Sunday school class that I can HELP with, not facilitate

OH, it's all pie in the sky. Because even if some of those things could be provided, it goes back to the original theme, I need that kind of help indefinitely. I'm guilty of it too, that kind of long term help simply doesn't exist. By default of our family's needs, we expire the limits of patience, understanding and compassion.

I'll end with this thought:
Hil, if you're reading, this is for you. Thanks for being awesome, patient, understanding you. Really. THANK YOU

IF I make it to the S!arbucks for the Daisy leader meeting and you ask me how I am, I'm not going to know what to say. Because how am I? I don't know. I've just left the house after deescalating Sissy from a three hour rage fest about alphabetizing her spelling homework. We thought about calling 911 but opted not to. I thought about calling to say I wasn't coming to the meeting but didn't want to do that either because I like being a Daisy mom and I like spending time with the other leaders. But The Dad was awesome and saw how stressed I was so he sent me out anyway with a kiss and an "I love you, I've got this" and I left WG in her bed screaming, "but Mommy, WHEN are you coming home?" and I shouted back to The Dad as I closed the door behind me, "Just let WG sleep in our bed, I'll move her when I get back!" And so I drove to Starbucks crying the whole three miles because damn, it was another rough night and it just never ends and I REALLY want to be a Daisy mom because I love WG and poor AB who is skippy slappy flippy flappy stressed and UGH UGH UGH, Sissy. GOD in heaven, what do I do with Sissy?! and so you ask me how I am and I'm shaky and tired and want to cry but I also want a cup of coffee and to talk about how the girls are going to earn the next petal so I don't know. Is that OK? I don't know how I am. I don't even know how to answer that question. I just don't know. How I am seems so indelibly tied into how Sissy is and how AB is and how The Dad is and how WG is that I forget that the question is just simply, 'how are YOU?" So I mutter "fine" which seems so stupid because clearly I'm not but what SHOULD I say? It's a Daisy troop meeting, not a therapy session.

And this is my EVERY day. And how are churches supposed to support this? They can't. They just can't. So they say "God will see you through" and "God won't give you more than you can handle" because that's all they've got in the end.