Buckets

“Buckets?” he asked.  “Yeah, buckets,”  I answered.

I haven’t cried like that in so long that I didn’t know until then that my right eye doesn’t produce tears.  It is difficult to say much about this movie, called Ocean Heaven, except that my friend was spot-on, I cried buckets.

How do you recommend a movie, made in China, starring Jet Li, the martial arts movie star, subtitles and all, with more enthusiasm than some have shown for Gone With the Wind or Titanic?  Easily, and in my case, more so.

I cannot think of a movie that has moved me more than this.  It was better the second time, when I watched it with my husband, even though I knew how it would end.

All I can add is that this movie looks at the perspectives of both the autistic person and the struggles of the caregiver with compassion that I have never seen in any movie or documentary.

Of mice and… uh… books?

A couple of short things.

IMG_20141024_165752_141First, more fun ‘n’ games with Joey’s old desktop.

The cursor was sitting in the middle of the screen, not moving. I’d managed to wiggle stuff, turn it on and off, and dance around it with chicken feathers and a gourd rattle to fix the problem in the past. But this week it wasn’t fixin’. Every time I plugged the mouse in, I got a “USB device not recognized” bubble, with a “Click Here for Solutions” message, only I couldn’t move the cursor to click there.

So Joey sat in a bored protest funk for several evenings, intoning “The computer is BROKEN?”

So I called the famous Mr. Monte, our family IT guy, who was just over a flu and pulling weeds but still nice about me bugging him again.

“You’ve tried plugging the mouse into a different port?”

“Sure. All kinds of different ports.”

“OK, turn the mouse over. Is there a red light on?”

“Uh, no.”

“The mouse isn’t working anymore.”

I ran downstairs to where we have all kinds of electronic junk, but no mouse to be found.

Mr. Monte has better electronic junk, and he brought over a live mouse (is that what you call it?) the next day. Computer action good as new. Joey happy. Joey up all night so bright light shining into our bedroom until the wee hours.

OK, I promised books in the headline. If you go to this link, you can get some great books from Lighthouse Publishing of the Carolinas. If you use the coupon code TFountain, you’ll get a 20% discount! Great established and emerging writers in all genres, in all your favorite formats – print, kindle, nook. You might discover some great stuff that gets buried at megasites like Amazon.

Lighthouse Publishing of the Carolinas are the folks who will be publishing our book about care giving (guesstimate of release is August, 2016).

Happy reading! Happy mousing! (Oh, wait, that’s what cats do – or are supposed to – right?)

That’s The Ticket

One way that Melissa and I refresh ourselves is reading. Although we don’t get to sit by pools or beaches here in flyover country, we still get in our share of summer books.

CoverWe recently read the debut novel by Vanderbilt Professor and award winning writer Debra Coleman Jeter, The Ticket. We didn’t know it going in, but the story is full of characters, scenes and ideas that will ring true to caregivers.

Debra Coleman Jeter

Debra Coleman Jeter

We have a treat for you this week: the author was responsive to our care giving perspective and gave us an interview. We hope that our questions and her answers will encourage you, and we recomment The Ticket as a great read, summer time or any time.

Here’s the interview, and more information about the book and the author follow below.

T&M We don’t think it’s a spoiler to let on that The Ticket is a winning lottery ticket. Many folks think of those as “silver bullets” to solve life’s problems: “If I could just win the lottery…” Many caregivers get caught up in “silver bullet” claims of therapies or cures for problems like autism. What would you say to someone who is thinking “If only this one thing falls into place”?

DCJ As my husband sometimes says–quoting his dad, who lived to be 94—“It’s always something, and if it is not that, it’s something else.” I think we need to strive to be, as the apostle Paul said, content regardless of our circumstances. If we wait for the circumstances to be in perfect alignment, we are setting ourselves up for disappointment time and again. Perfection simply isn’t the nature of our existence or this earth. It’s natural, though, to hope for ways to improve our lot.

T&M We think that any caregiver who reads The Ticket will resonate with Tray’s words and thoughts, especially in her relationship with her mother. Do you think that caregivers are born or bred? Does Tray have a gift, or has she been enslaved by her circumstances?

DCJ I think it’s probably a little of both. We have lots of male caregiver role-models in my family on both sides, notably my father and my father-in-law. In the case of my father-in-law, his second son was damaged by forceps during a very difficult birth, resulting in a severe case of cerebral palsy. After his wife fell ill, my father-in-law became the primary caregiver. I think it was in his nature to be a loving father, but the circumstances certainly tested his level of commitment and he rose to amazing heights in that capacity. In the case of my father, he became the primary caregiver when my mother’s parents fell ill—first his father-in-law, then his mother-in-law, and now my mom. I think it is in his nature to take responsibility (more than in my mother’s, even though it was her parents), and he finds great personal reward in doing for others.

T&M The picture at the top of our blog shows an unkempt corner of our yard with a neighbor’s perfect lawn just over the fence. The Ticket has Julia, who seems perfect on first meeting. Many caregivers feel like our lives are a mess and everybody else has it all together. What would you say to people who think, “The grass is greener over there”?

DCJ In my experience, no one’s life is as flawless as we might think upon casual acquaintance. We can probably all think of one or two couples we once knew who seemed like the ideal match, but who ended up in divorce court. One of my favorite childhood books was Pollyanna. No matter how dire the circumstances, Pollyanna always found something to be glad about. Conversely, if we try, we can always something to complain about. Wouldn’t we rather be like Pollyanna?

T&M Christianity is our family’s foundation for care giving, but it comes with its share of open questions. Do you think there’s a way to tell when the sacrificial love or “agape” of the New Testament slips into what Jesus warns against, “Casting your pearls before swine”?

DCJ This is a tough one. Our elders at my church struggle with decisions about helping people to help themselves, as opposed to giving handouts. As a parent, we want the best for our kids, but we want them to learn to fend for themselves so we don’t do their homework for them. My mother is having more and more trouble getting around and doing simple chores; but if my dad does too much for her, she will let him and go downhill even faster. I think we have to address each case individually based on the specifics, with lots of prayer, and ultimately we may still not know.

T&M This line from The Ticket echoes a lament that we hear from almost every care giver: “Is it just me or is everybody cruelest to the one person who gives them the most unconditional love?” The character who voices it is feeling remorse for being cruel, but most care givers have times when they feel on the bad end of the cruelty – as if our sacrifices are spit upon. Any words of encouragement or insight you can share?

DCJ Your reward may not be immediate, or even in the near future. But I believe it will come, either in this life or in the next one (or both). It seems likely that when your reward on earth is less, your reward in heaven will be greater.

T&M The Ticket is full of characters, situations and dialogue that will ring authentic to care givers. Where did you go for insight? Are there personal experiences upon which you draw that you can share with us?

DCJ My mother had manic depressive disorder when I was a child (more often called bipolar disease these days), so I experienced some of what Tray does firsthand. My father has been her primary caregiver; so I’ve also had the opportunity to observe him and, as mentioned in answer to #2 above, my father-in-law. My mother sometimes jokes: “It’s more blessed to give than receive. But receiving is good enough for me.” Are some people natural born givers and others receivers? I have to wonder, but I also believe we can become more giving with time and prayer and God’s help even if it isn’t in our nature.

T&M Thank you for your time, and most of all for a wonderful book.

DCJ I’m so glad you found things in my novel you could relate to.

About Debra Coleman Jeter:

A Vanderbilt University professor, Debra Coleman Jeter has published fiction and nonfiction in popular magazines, including Working Woman, New Woman, Self, Home Life, Savvy, Christian Woman, and American Baby. Her story, “Recovery,” won first prize in a Christian Woman short story competition, and her nonfiction book “Pshaw, It’s Me Grandson”: Tales of a Young Actor was a finalist in the 2007 USA Book News Awards. She is a co-writer of the screenplay for Jess + Moss, a feature film which premiered in 2011 at the Sundance Film Festival, screened at nearly forty film festivals around the world, and captured several international awards. She lives in Clarksville, Tennessee, with her husband.

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The Ticket at Amazon.com

Goldilocks Syndrome

Some cute bears just because bears are in the story.  Irrelevant, really.

Some cute bears just because bears are in the story. Irrelevant, really.

I’m assuming that you all know the story of Goldilocks and the three bears. If not go read it here before it gets banned or something.

Anyway, the key is that the little home invader keeps trying stuff out in the bears’ house – food, furniture, whatever – and goes through a “too much, too little, just right” dialectic each time.

Coming to the help of caregivers is similar. You can come on too strong and amp up our anxiety, or you can stand back and make us angry because you just don’t seem to care. Finding “just right” is not easy.

We wish there were a magic something something that would make our situation all better. So why wouldn’t you be tempted to come on too strong and try to fix our world from top to bottom?

At the same time, our situations overwhelm us and we want to escape. So why would you want to wade in at all?

Caregivers (especially the lame kind that blog) complain about this stuff all the time. “I can’t believe the way grandma walked in here like everything I do is wrong and she’s gonna fix our kid.” Or, “I’ve been going to that church for twenty years, and not a single person’s offered to help me with this mess.”

A care giver in another city had a bunch of church people show up at her house without warning, packing all kinds of cleaning supplies. And clean up they did – not just the house but what little remains of calm and sanity she had that day. It was embarrassing for her and stressful for her family. Other help might have been welcome, but the church folk did what they thought was important rather than ask what the family might need.

The flip side (anybody know what a flip side is anymore?) is in this Facebook comment from another care giving friend,

All we got from our parish was ignored.

Our church recently tried something that we hope will be “just right.” We identified people we knew to be family caregivers. There were lots when we pulled out the parish list and gave it some attention. Some of it is the normal course of aging and one spouse needing to do more for the other. Other families have a loved one with chronic or terminal illness. There are grandparents caring for grandkids, and kids caring for parents. And there are the special needs families like our own.

We sent a personal note to each, expressing our respect for their efforts. We included a care giver resource sheet from a local community center, and this Bible verse,

God is not unjust; he will not forget your work and the love you have shown him as you have helped his people and continue to help them. (Hebrews 6:10, New International Version)

IMG_20150703_115452_701Before the letters went out, they were placed on our church altar and the care givers and those in their care were prayed for by name.

Our hope is that these letters will land in the “just right” place. For those who value privacy and self-sufficiency, we hope to communicate a bit of recognition and encouragement. For those who might want more, we hope the letter is an invitation to ask for help on their terms.

To take it down a few notches and give some workaday examples, it is like dealing with customers in retail. You can put them off by hard sell, and you can put them off by ignoring them. Same with visitors to a church – they don’t want to be pounced upon and they don’t want to stand in a corner while everybody else gabs and swills all the coffee after the service.

If you know a care giver, try to find a “just right” overture. Don’t try to barge in and fix everything, but don’t stand aloof.

And if you are a care giver, don’t make others guess. They are just as intimidated by your situation as you are, but you’ll find they can be very loving and helpful if you’ll give them a bit of guidance.

Changes

Mom and JoeyToday there will be no graduation ceremony or reward after over 21 years of continuous baptism-by-fire study, which more often than not kept us awake nights and hyper-vigilant most days.  I remember on one of these days, after having washed a few dishes, I immediately checked on Joey in his room and he was stretched-out on the floor, post-seizure.  The guilt was horrific. When he is home, you listen or else.

Our marriage is intact and happy after over 25 years. Joey is still happy and intact after 21. We did our best and have beaten the odds.

Maybe the reward is the sword that cuts both ways.

On the positive side, Joey will be moving to an apartment with 4 or 5 roommates near his age and a full-time staff that is “fresh” as they work in shifts.  We will no-longer be sleep-deprived, listening with one ear open all night for grand-mal seizures, or awakened by him for the many other reasons that he chooses – running around clapping his hands, turning on lights or our TV to use as a night light, or one of our favorites:  the power went out last week as he had awakened to watch a movie at 3am and he stumbled into our room to say repeatedly, “The TV is broken?” Our answer “The power is out,” just wasn’t cutting it for him.

There will be nursing on-hand 24-hours to help him if he is found banging is head open, blood splattering everywhere.  Staff will help him with his contentious post-seizure temper and clean him up for follow-up care.  We will have him home to visit often but as we have heard, he will want to go back to his own space once he has gotten used to it.  The facility and program is the best that we could hope for: a large, private room of his own and community rooms with comfy chairs.

But, as I said, the sword cuts both ways.  Joey does not always come into our room at 3am.  He often joins us in the living room, sits next to one of us, tells his version of a joke, relates who got into trouble during his day program, or tells us what present he wants for the next holiday.  He says “I want Mommy’s eye,” and gently holds each side of my head, touching his nose to mine, staring into each eye for about 30 seconds.  His alternative for wanting a hug is “I wan’ hair,” even to bald Daddy, which means that you touch foreheads (as the Conehead family did back in the ‘70s).  He loves to make conversation by switching incorrect vowels for correct ones, such as “I want to oot some pizza,” or entire syllables, such as Poch-a-ploop-as for Pochahontas.

The other day, we were going to an exciting event for a short time.  He saw Dad dressed to go out, smiled and said “Dad has to go to work.”  (He loves Dad very much, that’s just his way.)  He saw me dressed to go out and looked betrayed as if to say “Et tu, Mommy?”  I said, “Just go to bed when you are tired.  We will be home before it is dark outside,” and he was fine.  (A few friends were here to look after him.)

I once told an old friend, “It could be worse.”  She said, “How?”  I never responded.  Autism is not something you want but something you get.   And it not only does not stop you from loving them, it does not stop them from loving you.

No award for surviving tantrums, bed-wetting, bathing, teeth-brushing, med-giving, feeding, not being able to use him as a slave to mow, shovel snow, vacuum….   Yet I know his leaving is going to leave a hole somehow, and the scary part is that I do not know how that is going to feel until it actually happens.

He is too old to hang with his parents.  It is time to get back to our marriage and not have to pick him up by 6pm. Although the following was written for a different reason, I heard it with tears and thought selfishly of me. We are told repeatedly “Oh don’t worry, you will feel so free and he will love moving.”  I am thinking of the day when we do not actually say “Bye-bye” but that is exactly what we are doing.

“ ….I’ve been afraid of changing / Because I’ve built my life around you. / But time makes you bolder / Even children get older / And I’m getting older too.”

“Landslide,” Stevie Nicks, Reprise Records 1975