Care giving still stinks, but we’re thankful for…

Feel free to leave a comment here, or over on our Facebook page. Let’s share and celebrate those good things that have come/are coming our way.

Yes, care giving sometimes stinks, and the holidays can pile that on. Some of us wind up working harder on holidays, when schools and community programs are closed and the full weight of special needs is ours to carry 24/7.

But the good stuff happens, too.

This year, I find myself giving thanks for

  • The dedicated and diligent Psychiatrist who
  • hypothesized that our autistic son was far enough along in years that some brain chemistry was settling and
  • tapered him off of Adderall (attention deficit) and Seroquel (sleep), and
  • that the hypothesis was right and
  • not only did Joey suffer no ill effects or setbacks once off of the meds but
  • is cooperating with Melissa on Sundays so she can go to church again and…

Well, that’s a ton of THANKS BE TO GOD from us.  How about you?  Any sweet stuff amid the stinky?  We’ll lift thanks with you,

We will shout for joy at your victory
and triumph in the Name of our God;
may the LORD grant all your requests.
(Psalm 20:5)

Happy Thanksgiving!

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HAPPY THANKSGIVING! Hope your fun is maximum and your chaos blessedly minimal. Here’s a side you can do waaaaaaaaaaaaay in advance, before your special needs kid is on “holiday schedule” and making attention to much of anything impossible. And this will get you some rave reviews.

Yeah, the pic looks like a bowl of mere mashed potatoes. But these are SMASHING…

Peel & boil 5 lbs. of red potatoes, drain, mash until smooth.

In a microwaveable bowl, soften 8 oz. cream cheese, 1 cup sour cream, 3 tb. butter, and you might as well toss in the needed 2 tsp. garlic salt, 1 tsp. salt and 1/4 tsp. black pepper.

Beat all that goodness into the potatoes until you have your desired texture. Let it cool, then cover. (We like to layer clear wrap over it, pressing it down flat.) Put it in the ‘fridge at least overnight of for up to 7 days (yes, a week. The flavors blend with time).

When you’re ready, place the desired amount in a non-stick or greased casserole, dot w/ desired additional butter, and bake at 350 for 1/2 hour.

Don’t look now

So Peter got out of the boat and walked on the water and came to Jesus. But when he saw the wind, he was afraid, and beginning to sink he cried out, “Lord, save me.” (Matthew 14:29-30)

Nah, no sermon. This story just came to mind today after Joey’s music therapy.

The therapist was overjoyed by how much more attentive Joey’s become over the last few months. We both agree that coming off of some medications is opening Joey up emotionally. Or maybe it’s just that this therapist is really good, or that music is a primo way to engage Joey’s neurological system. Or that he knows he’ll get quesadillas from Taco John’s after music therapy. (Check “All of the Above” is that’s an option).

Today, I heard a good snare drum back beat coming out of the music room. I assumed that the therapist was playing recorded or computer generated percussion. But she came out beaming with the news that Joey was actually keeping a beat on the drum. He was the live rhythm section to recorded music she played, and was doing so well that she picked up her guitar and began to play along.

Lewis & Clark Rec Area Oct 1 11 008Then, like Peter walking to Jesus on the water, Joey had a flash of “Hey, wait a minute.” Unlike Peter, who went into a panic, Joey just smiled big and stopped drumming. It was like he was saying, “C’mon, you know I’m not supposed to be doing this.”

It was such a joy to come home and brag on him to his mom. Sometimes there’s a spontaneous step and a walk-on-water moment happens.

For Every One Of Them…

…there are 1,000 of you.

I have been following a cheerful blog for a long time about my old ‘hood somewhere in Southern California, near a beach where the sun is usually shining and people are surfing regardless of the weather. I hear about everything from the piers that soared far past the waves with their roller coasters, Ferris wheels and cotton candy, to what is happening at my high school that has been there since before my parents were born. One of the topics of late has been about a man who is special-needs, who rides around on his bicycle, wearing a helmet, and who, from all accounts, likes to make friends with everyone he meets.

Apparently, because of his “special-needs,” he does not realize that staring at anything of interest to him is not always appropriate. He probably stares at the stars, or a harvest moon; one of the lovely wall paintings or at the ocean waves or at a talented musician on the boardwalk. As you might imagine, being a man, he notices when a woman who takes good care of herself is present, not unlike any other heterosexual man on this planet.

But, he is “special-needs” and “unappealing.” My question, in not knowing him, is, “Was it worth publicly posting this?” Can he read? Can his family read? Will anyone who knows and loves him see this? If he doesn’t live with them, he might live near them and they very-likely go to the same blog.

To those of you who posted those comments and said “perv,” I can only say: For every guy like him, there are 1,000 of you who stare at a guy like my son. My son does not stare at anyone. At the park, he swings on a swing, claps his hands and talks to himself. He 19 years old and his facial hair is sometimes a bit grown-out. Either my husband or I or an aide are always near to watch him for seizures and explain to others that “he is autistic.” Still, in restaurants and other public places, my son knows he is being stared at and it hurts deeply. Don’t think it doesn’t, just because his face shows little emotion. He says “I am happy” and “I am sad” with the same lack of expression. That is autism.

So, the next time you think that a special-needs person is looking at you inappropriately, remember the times that you may have looked at another one of them in the same way. Ask yourself, who is the person most-likely to muster-up some self-control?

Next time I blog, I will play a bit with my sense of humor. It seems to have disappeared for the moment!

Some things get better

Not gonna write about stinky stuff, even though I am running between the kid’s bathroom “incidents” today.

Instead, there’s good news to share. I hope this will encourage you, especially if you are running between incidents. Hang in there. Some stuff gets better.

Last Saturday, we drove 2 1/2 hours to visit friends down in Iowa.

On the trip, it hit us just how much a few bits of Joey’s life have improved with age.

IMG_20131109_170001_426Here’s a picture of Joey and Melissa, as the sun set and we waited in a parking lot for our friends to arrive. It doesn’t seem like that long ago that Joey might have had a violent melt down or suffered a seizure after a long car ride to a strange place. As you can see, he’s far from anything like that. He cooperated when I asked him to walk over to the bushes for a picture. He didn’t pull away when Melissa leaned close. He looked at the camera and smiled for the picture.

We’ve seen a lot more of his happy, smiley self since his psychiatrist eased him off of Adderall. Joey was on it for years, to help with his short-to-nonexistent attention span. But it is a stimulant, so it kept him anxious.

The Doctor theorized that Joey’s age had settled some brain chemistry and set about reducing some of his meds. So we took the risk of tapering the Adderall dose down until it was finally eliminated. And we’re all enjoying more of Joey’s joy as a result.

We had a great dinner with our Iowa pals. Joey was patient and good company. Evenings like that used to be impossible. Joey would have been out of his chair, making noise, grabbing stuff off of other tables and running outside. He would have been plenty upset and would have shared that wealth generously.

He’s come so far to just sit at the table as a pleasant young guy. Can’t point to any particular therapy or medication for that – it seems to have come with age. A fringe benefit of just hanging in there.

We got to stay out pretty late with our friends. In years past, we would have had to end any socializing too early, because Joey’s meds would knock him out and we would need to lug him home to bed. He used to take Seroquel to help him sleep, because for several years he hardly did and neither did we. But the Doctor tapered him off of that, too, and he seems to have outgrown the need for it. His sleep habits are pretty much like most folks’.

Not everything gets better (says I, running stuff to the laundry room). But some things do.

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Be patient, therefore, brothers, until the coming of the Lord. See how the farmer waits for the precious fruit of the earth, being patient about it, until it receives the early and the late rains. (James 5:7)

No silver bullet

We can remember the way the room went ice cold each time a doctor brought us closer to the diagnosis – really more like a life sentence – of autism.

First there was a primary care check up where Joey’s eyes didn’t track the doctor’s moving finger. “Something doesn’t seem right” was the cautious medical opinion.

Next up was a pediatrician who expressed certainty that Joey was autistic. Melissa remembers “not being able to breathe” as the word sank in.

Finally it was a pediatric psychiatrist. Joey ran back and forth across the room, flapping his arms. We later confessed how we both sat there hoping he would stop – just for a few minutes – so maybe the diagnosis wouldn’t be firm.

Care givers want the autism to go away. That’s not a constant gnawing. But the feeling stays close and pounces just when we think we’ve made peace with how things are.

There’s always the hope that someone will hand us a silver bullet that “cures” the autism – or at least makes it manageable. The right school, the creative therapeutic technique, the magic medicine, the new diet, an answered prayer. Something, anything.

One of the saddest things is the way care givers’ craving hearts are open to announced “causes” of autism. Not that knowing the cause means assurance of a cure, but there’s a sense of control that comes from drawing straight lines. “This happened and then that happened” is more comfortable than “We have no idea where this came from or why it happened to our family.”

And it’s probably true that some care givers wonder what they did to “cause” the condition. It would be a relief to know that some common environmental factor showed up in all cases; that it wasn’t our “bad parenting” or that we pissed off the gods or something.

Top researchers empathize with care givers. David Amaral of the University of California, Davis, says, “I always feel apologetic we haven’t done more faster. Sometimes parents will come to us wanting to try a desperate treatment — and we don’t have the evidence to even say don’t waste your money on that.”

The craving for certainty is powerful. One of the most passionately clutched silver bullets is that autism is caused by the Measles, Mumps and Whooping Cough vaccination. Celebrities promote it, and many care givers swear by it.

We won’t pound you with all of the research and arguments here. We think that the vaccination-autism connection is correlation, not cause. The vaccinations and the appearance of autism symptoms both happen in the second year of life, so it’s small wonder that people with broken hearts look and see a silver bullet explanation of their plight.

But firing the silver bullet can lead to terrible unintended consequences. In this recent report from Maryland, which never mentions autism by name, it’s clear that some have shot the bullet and it is bouncing around causing all kinds of harm,

Deadly diseases, once nearly wiped out, are making a frightening comeback in Maryland and across the country. Now — a warning that parents who don’t vaccinate their children are putting others at risk.

We’re not going to tell anybody what to do – we are amateurs just like most family care givers. But please, please, think long and hard before buying any silver bullets that folks are selling. And be even more cautious about loading and firing one through a rash choice.

One small step for man

Nah, I’m not rehashing the moon thingy, cool though it was (but by no means perfect).

Small steps can be life changing. Or at least make a day better.

We had snow in Sioux Falls the other night. It was deep but fluffy, easy to shovel. But shoveling doesn’t get every last flake of snow off of concrete, and what’s left becomes spots and patches of clear ice as the overnight temperature falls. Morning brings the risk of a nasty fall.

Sure, I spread ice melt crystals around, but I never get 100% coverage. Besides, our autistic kid is not going to look down and carefully pick his steps on the path I’ve set.

IMG_20131107_074901_051So I helped Joey slip into his coat and backpack when his paratransit ride arrived. I held his arm down the front porch steps but then, as is is custom, he bolted and skipped toward the bus.

The air went out of me as I watched.

Then the door of the bus opened, and the driver stepped down into our driveway. Just a few steps, but she met Joey and took him by the arm the rest of the way into the bus.

It meant the world to me. They were just a few steps but they reflected an ocean of awareness and compassion that the driver had for her passengers – in this case, for our son.

Nobel Peace Prize Winner Desmond Tutu, the former Anglican Archbishop of South Africa, was first drawn to the church when, as a child, he saw a clergyman do something unexpected in that time of racial separation. The privileged White man stepped courteously off of the sidewalk and into a muddy street, and tipped his hat as Tutu’s mother passed by.

A small step that changed a life course, which in turn changed a nation and impacted the wider world.

Care givers make many small steps each day. We cease to notice them because they are born of necessity. But we notice the small steps others choose to take for those in our care, and these warm our hearts. We give thanks for them – and for you who take them.

A tale of two Joeys

We went to a friend’s funeral today.

At the reception after, a special needs woman attempted to interact with Joey. He was aloof, kind of like he is toward our cat (and vice versa).

She offered to take Joey, who was done eating reception food and ready to go “back to Joey’s house,” into a comfy sitting room and read to him. Some of the other folks asked, “Joey, do you want to go let her read to you?” To which he gave a firm “NO.”

We’ve noticed that Joey gets antsy when other special needs people are around.

Our hypothesis is that he can distinguish special needs from typical people, and he assumes that when typical people bring two or more special needs people together, it is to make them “work.”

School, community programs, whatever – Joey perceives that the folks like us like to round up the folks like him and set them at undesirable tasks.

On the other hand, he’s shown himself able to enjoy spontaneous encounters with other special needs people under certain conditions.

One weekend, I took him shopping with me. While I bent over comparing canned tuna prices, I heard him chuckling behind me. A group of special needs guys, apparently residents of a group home sharing an outing, happened upon us. There were lots of smiles all around, and they and Joey engaged in chit chat and laughs. It was a chance encounter of a group of pals, without taskmasters scripting the interaction.

There’s more to explore, lofty scientific types that we are. When Joey does seem relaxed and interactive, it’s usually with guys. He tends to go aloof around girls.

So we need to test for cooties.