Stuff we’ll miss

The thought of our son packing up his autism and moving to a group home is something we’ve been waiting for.

But it will be disorienting for all of us. He’s a considerable influence on how our time, attention and energy is deployed every day. He’s as big a part of our days as are we of his. When he moves there will be lots of empty space and two people looking at each other and wondering, “OK, now what do we do?” As married folks know, that provides lots of room for misunderstandings, disappointments, fights…

Of course it won’t be all relief and freedom when Joey moves. We will miss him. He doesn’t just fill our time, he blesses it.

I (Tim) am much in touch with that today. I tend to be an early morning person and I use that time for, among other things, prayer. The pets are “mornings” as well, and after haranguing me for their food, brushing and the dog’s trip outside, they curl up and hang out while I pray.

IMG_20150528_070330_431Joey is sometimes morning, sometimes not. This morning, he is.

He sits across from me, bundled in a blanket (for people with autism, that can be a sensory comfort apart from any warmth it provides). I play some recorded sacred music as part of my prayer time, and he takes that in.

He chit chats when I’m reading or praying silently – just little quotes from movies and his usual small talk, which isn’t really small because it is his way to build connection with others.

As you can see from the picture, this is a happy time for him. And it is for me. And it’s the kind of Joey time that Melissa and I, as much as we will enjoy a new empty nest freedom, will miss.

A selfish couple’s un-family celebration

Wedding portraitToday is our 25th wedding anniversary. We are going out for sushi (which we love but isn’t in our son’s sensory palate), and we’re going out with friends instead of as a family. Well, as a couple, but not as a whole family. And this is a good thing.

Joey has “Miss Mary,” who is actually Mrs. Mary, the wife of computer rescue guy Mr. Monte. Joey likes her and she’s going to come over and bring pizza (key to his sensory palate) while Melissa and I are out anniversary-ing and sushi-ing.IMG_20140802_125010_130

Restaurants = respite. No cooking, serving or cleanup. So that’s a treat right there.

Friends = adult conversation about stuff other than autism, Disney lyrics, or chores.

Care giving makes “normal” stuff loom large. A Silver Anniversary is blessed by dinner out with friends. It doesn’t require a round-the-world cruise… or even silver. The twenty five years, most of them spent as care givers, have made some dreamy things seem more unreal and impossible but many simple things more glorious.

But it’s not all un-family. Our older son & his wife sent us these gorgeous, fragrant flowers…
wedding flowers 2

Care giving is so romantic!

Sometimes I ramble around the internet reading stuff. Many topics interest me, so these cyber jaunts are conscious stimulation of the real me. And in all honesty they are also escapes from the limited me imposed by care giving.

My Spanish used to be quite good and I still have enough left to get into trouble (but not back out). Tonight I read a Spanish blogger’s latest, called “Sad Symphony” in English.

She laments loving someone who runs hot and cold on her. That’s a familiar romantic motif, isn’t it? I mean, Gone With the Wind shrinks down to an hour episode without it.

A few lines of the blog arrested my attention. I’ll put ’em up in Spanish so you can check my translation (or you can trust me and just skip down):

Me siento atada. Atada a una vida que no quiero, que no he elegido. Atada a personas que nunca hacen por entenderme… atada a algo que no sé controlar, atada, amarrada y encadenada a un sentimiento del que no se de dónde viene ni a dónde va. Queriendo gritar con fuerza, y sin encontrar las ganas para hacerlo. Me siento encadenada a algo que me controla sin que pueda escaparme ni correr…

If I’m reading it correctly, it says

“I feel tied up. Tied to a life I don’t want and didn’t choose. Tied to people making no effort to understand me… tied to something I don’t know how to control; tied, bound and chained to a feeling that I don’t know where it’s come from or where it’s going. Wanting to emit a violent scream, and not finding the will to do it. I feel chained to something that controls me and not able to escape or run…”

Well if that’s the sweet torture of romance, then care giving is epic, ueber, hella romantic.

I mean, care giving arrives and ties your life in knots. You don’t invite it and it doesn’t ask you if you want to sign up.

Care giving is mostly you trying to learn, understand, translate and make allowances while getting back about 99% unhappiness and criticism.

Care giving is drowning in waves of emotions, sometimes yours but sometimes billowing out from those in your care, with no clear sense of any purpose other than trying to gulp some air and survive.

Care giving is feeling trapped – your emotions, hopes and needs trapped somewhere inside and action trapped in routines created by external forces and needs.

But hey, ain’t that romance? There are songs about it (please forgive my entrapping you in the stupid ads that precede the videos)…

… and of course fine fiction…

romance

Well, you get the point.

By the way, this week Melissa and I will celebrate our 25th wedding anniversary. Yes, Silver. Romantic that I’ve become, I told her, “The only silver you’ll be seeing is if I don’t shave for a few days.”

Doesn’t God care about caregivers?

This one was one of our most read last year. The lesson on which it is based came up in Tim’s morning readings, so we’re reblogging it today.

Sometimes Care Giving Stinks

Now as they went on their way, Jesus entered a village. And a woman named Martha welcomed him into her house. And she had a sister called Mary, who sat at the Lord’s feet and listened to his teaching. But Martha was distracted with much serving. And she went up to him and said, “Lord, do you not care that my sister has left me to serve alone? Tell her then to help me.” But the Lord answered her, “Martha, Martha, you are anxious and troubled about many things, but one thing is necessary. Mary has chosen the good portion, which will not be taken away from her.” (Luke 10:38-42 English Standard Version)

Martha is a caregiver.

  • The fact that it is “her house” is unusual for the time. A woman lived in a house identified as her father’s until she married, and then lived in her husband’s house.  Martha…

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Eclipse(s)

Next week Melissa and I reach our 25th wedding anniversary. Yep, silver. Big milestone.

“Which day of the week is it?”

“Tuesday.”

“Oh, you’re home. What should we do?”

“Dunno. What would you like to do?”

“Well, Joey limits our options…”

It’s true. We can’t plan a big evening with the lad around, although in fairness we did get a respite person and some tickets to a concert the following week. And we are planning to have a clergy friend give us a blessing on the actual anniversary day.

But the reality of care giving is that it can eclipse aspects of life that would receive great attention under typical circumstances.

Siblings of special needs people sometimes gripe about getting shorted on attention from mom and dad.

Spouses put dreams off to the side and sometimes let them fade to black.

But all is not gloom and doom. Part of the eclipse factor is that we are absorbed with the possibility of Joey moving into a new residential setting (e.g. moving out) this summer. And with that comes what Melissa calls “this new season” when, perhaps, our life together comes out of shadow.

Eclipses happen. Some people read signs (always almost negative) into them, but they just happen. So it is with care giving. Yes, it changes things. It casts shadows (almost always frightening) over life. But shadows ultimately give way.

The light shines in the darkness, and the darkness has not overcome it. (John 1:5)

Food Glorious Food

Care giving has a big culinary component. Whether it’s about avoiding things that can hurt the person in your care, or sensory issues, or just plain provision of some comfort and pleasure, food is significant.

Some of you might have heard the news about the family of an autistic girl, removed from an airliner (on the ground, fortunately) because she only likes warm food, and the family was not sitting in the section of the plane where it was available. The pilot was worried that the girl might become agitated and disruptive, a legitimate concern, but decided to make an emergency landing and get the family off the plane rather than just authorize one warm meal in coach class.

I watched a documentary about frontier scout Kit Carson, and was touched by the way he died happy and at peace after a doctor honored his request for a buffalo steak instead of the medicinal gruel he was being fed in his final illness. Sometimes the wrong food is the right thing for someone in our care.

Our son had a great home therapist who wanted him to go on a special diet. We gave it a try because the therapist was so good with Joey and we valued his suggestions.

Joey hated the diet. Yes, it probably was healthy. But Joey’s behavior went downhill when we forced him to eat stuff that didn’t appeal to him, and his disposition and performance in therapy improved when we went back to the pizza and burger fare he preferred. (Just so you know, Joey has regular blood tests to monitor his medication level and side effects, and his health checks out pretty darn well even with all the salty carbs he munches.)

I know caregivers to people living with a variety of special needs, disabilities and illnesses, and it is common to hear how favorite foods are one of the few pleasures that those in their care can continue to enjoy.

Eating is one of humanity’s basic ways of bonding and socializing. So it is a means to overcome the isolation that those in our care can experience. It is one tool to overcome the social barriers created by autism. Last night I told Joey that we ordered some favorite food, and instead of hiding out with his videos or computer he came and sat in the front room with us to wait for the meal.

enchiladaToday I had some time to cook, and I found an appealing enchilada casserole recipe. Joey ate a big plate of it, and I have to admit it made me feel good. So food can work for the caregiver as well (provided we don’t turn to overeating for comfort and damage our own health – something I’ve had to battle.)

There’s more to food than health and fuel, and that can be especially so when we provide care for others. There’s every reason to pause and give thanks, not only for nutrition but for the pleasure it brings.

You cause the grass to grow for the livestock
and plants for man to cultivate,
that he may bring forth food from the earth
and wine to gladden the heart of man,
oil to make his face shine
and bread to strengthen man’s heart.

(Psalm 104:14-15 ESV)

Or else you can burst into a show tune. That’s a gratuitous family joke, because our older son, although a fantastic cook, hates musicals…

Power Outage

Short power outage in town today. So no video, no computer for the kid. He looked something like this*:

porcupine
Or Maybe that was Melissa, reacting to Joey’s distress and non-stop complaining about no video, no computer.

He paced back and forth, saying “The TV is BROKEN?” with increasing agitation. The worry is that he can get wound up enough to have a seizure.

In the bad old days, such anxiety could resolve in a violent melt down, with no property or person safe.

Just so you know, the picture can’t be me, because I’m bald.

*Full Disclosure: It could be a younger picture of Joey, who used to wake up with bedhead like that every day.

Draft Picks

No, not the NFL draft. As much of a football fan as I am, Melissa and I both wondered out loud how anyone can bear to watch that. It’s a short bit of action about every 15 minutes, and the rest is the dreaded sportscasters speaking their platitude infested cant.

I’m musing on a Bible reading that came up this morning, in which Jesus, about to perform a miracle, picks a Mission Impossible team…

But Jesus on hearing this answered him, “Do not fear; only believe, and she will be well.” And when he came to the house, he allowed no one to enter with him, except Peter and John and James, and the father and mother of the child. (Luke 8:50-51 ESV)

He excludes all kinds of caring and curious people, but brings in the mom and dad as part of his team.

A central theme of this blog is that caregivers are a bunch of ill prepared, ill equipped and sometimes just plain ill amateurs. That’s why care giving stinks a lot of the time.

Yet the divine help comes, and we are part of miracles.

This morning I’m especially thankful for how we were helped through Joey’s seizure season. Those awful things came on as a surprise in his teen years, and have tapered off with meds and, even more, with the passing of puberty (yes, if you’re a parent of a typical kid, they are crazy during those years. Brain chemistry goes berserk.)

How he never seriously injured his head or neck in a fall (including a bloody gash incident that Melissa handled) is pure grace. We stayed close and caught him most of the time, but not 100%.

Anyway, just a reminder that God is with you, not because you’re perfect but because God loves those who are not.

The scourge of second hand autism

Melissa and I just discovered the reality of second hand autism.

We used to be deniers, but then we went to Charleston while Joey stayed behind in a respite apartment.

Melissa slept. She usually doesn’t sleep much. Then we came home.

Joey’s had one night up turning on lights and doing other Joey stuff, and several days of non-stop talking.

Melissa’s stopped sleeping again. We thought it was just maternal love, staying up in lonely vigil in case he had a seizure.

A177555_008
But now we know.

It’s second hand autism.

Please. Only you can stop second hand autism. Send us more airplane tickets. To anywhere.