A day in the LEAF

LEAFAsheville, a center for arts and culture in the Southeast, has no shortage of events that enrich the soul. Fortunately, the local arts councils are also generous with these events, providing free tickets to those who could not otherwise afford them. Little Miss and I were lucky enough to score day tickets to the Lake Eden Arts Festival, or LEAF.

The clouds had burst the night before, and some rain lingered into Saturday morning, but it certainly didn’t extinguish the spirits of those on site. When we arrived, the event was in full swing, concert music spilling into the air outside the tents, a poetry slam tearing words from writers’ hearts, the aromas of hot garlic and smoky grills on the breeze. Brave (foolish?) younguns ziplined down into the lake, now a balmy 50 degrees. One bank of the lake was lined with the tents of those staying for the weekend, the other with the festival venue.

Kids ran everywhere, enjoying being kids, many barefoot, even in the squishy mud left from the rain the night before. Arts and crafts booths lined the perimeter, and soon Little Miss sported her own magenta and lilac African mask on a necklace.

The crowd was a burst of colors, so many dressed in flowing fabrics and “hippie” style. I fell in love immediately with the atmosphere, one which pervades Asheville as a whole, but seemed concentrated at the event in one glorious serving.

The headliner for the music scene was Macy Gray; she’s playing today, so we missed her, but we didn’t miss out. Saturday afternoon, we listened to bluegrass artist Sara Watkins, and as the evening wore on we were treated to a show by Cuban R&B/hiphop artist Danay Suarez.  She’s one of LEAF’s teachers in the visiting artists program at local Erwin High School. Though her concert was in Spanish, even her commentary to the audience, it was easy to decipher her meaning once she began to sing. The reggae and jazz beats reached into the soul and lifted it up.

Such a wild and wonderful combination of folks! We, of course, hunted down our family connections with Lucia and Kevin Barnes from Ultimate Ice Cream (did you know they have a CSA for ice cream???), then moved on. I loved the folks with this sign–good advice was free, and “bad” advice, you paid for. Sounds about right.

I’d had a rough weekend physically, so I had my cane and a folding cart with a camp chair, etc. that I finally set up outside the concert tent. Little Miss announced she wasn’t done exploring, so she spent the next few hours going from booth to booth, talking to vendors, learning about sound healing, swinging on some awesome hanging chairs, smelling incense and candles and much more.  I know it may not sound like much to most folks that a 17 year old worked a crowd, but for those who know the autism spectrum, and Little Miss, this means she overcame the noise of the music and crowd, went on her own, spoke with strangers to gather information, and experienced independence–knowing I was in one place where she could find me if she needed anything. Pretty awesome.

Mid-afternoon, LEAF was treated to a parade with a host of performers like those of Imagine Circus from Raleigh, sparkling and dancing in the sun. 

 

A glorious day, in the end, though I hadn’t expected it would be.  Something I’ve been working on, my expectations. When you have debilitating conditions, it’s so easy to slip into a niche where you automatically choose not to go out and do things for fear of increased pain or repercussions or inability. I’m trying now to “expect” that yes, there will be difficulties, but the experience is worth it once all is done.

And the lovely Danay Suarez proved my point. The beats of her music got me to my feet, moved me like a hurricane wind from her island. I didn’t look around to see what people were judging this old, fluffy lady, swaying her hips with one hand on her cane and one on her chair. I was simply the music.

We went to LEAF. Little Miss got to be a real teenager. And I danced. 🙂

 

 

A local tradition–Fair time!

It would be difficult to find a bigger event in our county than the annual fair. It’s said to be the largest agricultural fair in the state. it sure feels like it on my broken knees at the end of walking around it all afternoon, that’s for sure!

I was originally not going so early in the week the events will be going on, but I made the mistake of discovering that a live wrestling event was going on. Not the  WWE, mind you, but a smaller, local version thereof. Little Miss has become a huge fan of WWE. for some reason, and I missed a chance to take her to an event last year. So I bucked up my courage and muscle relaxers and we headed out to the fair grounds.

IMGP2233She picked seats that had a great view,  away from the main crowd, and the bulk of the noise. I was also tickled that she managed to go to the  busy souvenir table, and negotiate her own signed photo of a wrestler, IMGP2224with her own money, despite a barn full of sensory distractions.

The matches were hot and heavy, and she got to see Asylum, her IMGP2225pictured wrestler fight.

My favorite was the last fight we watched….hard to tell who the “bad guy” was. The fight was allegedly for some Pennsylvania championship, and the current champ, IMGP2227“Big Time” Bill Collier, sure had a big shiny belt on. But he was fighting this little skinny guy in tie-dyed yoga pants, who IMGP2227went by the name Jimi the Flying Hippie. How could I not cheer for Jimi?

 

The crowd was funny, too, because Big Time came out as a bad guy….but sure as shooting, the politics in this backwoods haven of conservatives took over and the poor pinko hippie IMGP2237had no chance at all.

Once she’d had her fill of the entertainment this provided, we walked the fair grounds until I couldn’t stand it any more. We checked out the Home Show buildings, where she got comic books from the CCDAEC  that convinced her that I needed to stop drinking my once monthly wine coolers because I am clearly an alcoholic. *eye roll*

IMGP2241Of course we stopped by the Methodist Church building to have homemade pie! She tried strawberry rhubarb on purpose because it was something new. 🙂

And no Nick! Serious disappointment there.

Lastly, it was annoying as hell that the carousel they got this year was for little kids only, and they wouldn’t let her ride. She was nearly in tears, but stopped just short. It’s been her go-to ride, guaranteed at least five times a fair. She needs the spinny thing to help with her fair sensory overload. They didn’t even have bench seats, like most do, for the older people to relive a bit of their youth with a ride. Considering they charge admission including rides for everyone this year, you’d think everyone should have access to the rides. End rant.

So we went on the ferris wheel instead, and she pronounced herself IMGP2242satisfied, and reluctantly declared it her new favorite. From there we could see them setting up  hundreds of seats in addition to the grandstand for the Jake Owen concert. We left just before that onslaught of folks began to arrive. Yay!

Now for a night of trying my new magnesium oil spray and letting Little Miss de-stress. She had an amazing day, and I couldn’t be happier.

 

Summer of the game show

One thing we learn about kids on the spectrum is that they tend to think about things in a very black/white manner. What they see in front of them is what is; if it’s not there, then they don’t imagine it.

For years, Little Miss was this way, and it was a constant point of “push” on my part. Why did someone act in a certain way? What would happen if…? That intuition part was just absent. I always got an irritated “I don’t know,” or more often, just ignored.

But this year, that door has cracked open, slowly at first, and then the possibilities have expanded–thanks to American game shows.

I have mostly considered game shows kind of a waste of time. After all, I wasn’t winning anything. Other than bragging rights to answering Jeopardy questions faster than the contestants (not necessarily a grand feat safe on one’s couch), there wasn’t much point.

wheelBut then we discovered Wheel of Fortune. it was on one night and I noticed Little Miss picking out patterns. She could identify “the” from one letter. Or other combinations. So we started purposefully watching until she could use her intuition to guess the letters. Eureka! Something beyond black and white!

Simultaneously, her ability to explain other things not seen fleshed out as well. Why did that man on the commercial ask people to behave a certain way? What does that girl feel, just by reading her face? Continued progress.

So while other parents, I’m sure, are chasing their kids outside, I’m setting up game shows. We watch The Price is Right, to guesstimate LMADthe prices and how much things might be worth. We watch Let’s Make a Deal to learn how to make decisions about things that can’t be seen. Should you trade a small box for a large box? Is bigger always better? Is money in the hand better than something you can’t see? She nearly always chooses the sure thing. Can’t argue with that.

This month, she’s kept her tablet handy, and every time there’s a trip to somewhere, she looks up where it is, identifies the flag and the location, and shares some facts with me about the country or city. If it’s a place she’s been, it brings recall of fun trips together. Otherwise, it’s a painless geography lesson.

asseenOf course, she’s still focused on having all the “As Seen on TV” gadgets, or anything that’s marked “New”. We’re working on that. But watching how she’s developed this summer, thanks to these entertaining lessons, I think we’ll get there.

Now I just have to get her a passport so she can go to these islands in the Caribbean. She’s insistent….

 

Taking a moment to recognize success

little_girl_hugging_her_mom_0515-1004-2122-0454_SMUAnd in the end, the love you take

is equal to the love you make…  

(Lennon.McCartney)

 

Living with a child on the spectrum is so often a one-way street. No matter how you model appropriate emotional reactions or human interactions, many times there is no reciprocal response. While a neurotypical child may glean an empathetic response from experiencing such interaction in her own life, the same isn’t always true of a child with autism.

I say this having lived with three children on the spectrum, two of the Aspie leaning and the other more “typically” autistic. The boys often have no idea how to respond to emotional displays or the needs of others. (Surely this is why Sheldon Cooper has been taught by rote that when someone is upset, they should be offered a hot beverage.)

Little Miss, however, has come a long way on her road.

I know this because as I’m watching THE JUDGE this evening, a movie with Robert Downey Jr. and Robert Duvall (which I highly recommend), there comes a part where a situation very near to my own life occurs, and it hits me right in the gut. I start bawling, kind of caught off guard by the depth of the emotional net that traps me.

My daughter, who’s playing in her room, calls out to me, then when I don’t answer, she comes out to the living room,, concerned. She asks if I’m all right, and when I explain the parallels in the situation, she slides next to me on the couch and puts her arm around me, telling me it’s all right and that my parents will always live in my heart, so I shouldn’t be sad. When I manage to get under control, she leaves me long enough to bring me her own tissue box. She waits until I’m all dried up and then reminds me it’s okay before she goes back to what she was doing.

red flowers

red flowers

The enormity of what I experienced brought another whole round of tears, for a very different reason. Out of that quiet, self-absorbed girl, such a display of exactly the right reaction was unexpected–even more reassuring that she knows how to be a kind and loving person, and may, someday, be able to exist on her own and have friends and loved ones in her life. What a blessing. Just another reminder that none of us should give up, even when the going is tough. Hope is in the love you make for your child to experience. 🙂

 

A drive in the clouds

Driving back this week from Asheville, Little Miss and I experienced a chill, ethereal world that feathered off into the mountains on all sides.

IMGP2138IMGP2141Whether it was the blue hills of the southern Smokies or the pine-lined slopes of West Virginia, the world seemed confined to a narrow band of highway, and not much more.

Granted, we were mostly just trying not to get blown off the road by semis roaring past in the rain; but it was beautiful.

We did stop at the New River Gorge to get her National Parks Passport stamped, and took some pictures of the valley and river far below the visitors’ center.

We have become fast traveling companions, she and I, since we’re on our own now. She reads maps, tells me about the birds of the regions, and on this trip, insisted on using her own money to buy snacks for both of us. It was a delightful observation of her empathy and outlook for others.

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At nearly sixteen, she has come a very long way from the time I first began this blog. Then I didn’t even know the extent of the journey that awaited us. Some years we endured forty hours a week or more of therapy. More recently, a constant push to make every moment a teachable one suffices. She’s become a conversationalist, even with her peers. Perhaps she’s not the most stimulating passenger on a long route, but I’ve learned over the years to scale back expectations and appreciate even the small things.

It’s enough.

And that’s all that matters.

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Do you ever outgrow inadequacy?

My stepmother killed herself when I was 13, on a night when I retreated to bury myself in The Wizard of Oz to avoid the fighting that led up to it. After that, I was the person in charge of the house, in charge of raising my sisters, in charge of my own life.

I’ve come to the conclusion that 13 is much too young to do that.

NOT ME.

NOT ME.

I mean, sure I did it. I cooked the meals and cleaned the house. I made sure my sisters were in by curfew (before I went off to college) and that they had clean clothes for school every day. I inspired myself, because my single father chose to drown his sorrows in bourbon and spend his nights at a local bar playing “resident psychologist” so he could feel like he had friends. At the time, I felt like I was doing a pretty good job. My dad paid me $10 a week (hey, it was 1970) and I thought I had things all right. Even when I had to skip some of my friend’s events to take care of kids. Even when I didn’t get to make trips my friends did. Even when I never had a real boyfriend all through high school.

But looking back after my third failed marriage, I think I didn’t have a handle on things. Without loving, adult guidance through those stressful teenage years, I didn’t learn how to relate well to a partner. Everything was just, “Get through the day and make sure you’re not losing any loose ends.” I’m good at that. Perhaps a bit of a control freak, even. So I’ve been told by every man who’s left me. Hard to deny it, I guess.

When you grow up having to mother everything in sight, I suppose that takes a swipe at your ability to choose a good partner who will be strong enough to help you, or Heaven forbid, actually take care of you. I’m sure the psychologists would say that I was drawn to men who needed to be taken care of instead. Well, that certainly played itself out.  Bottom line is I find myself older, damaged, and alone.

It’s pretty sad some days when the only empathy I get is from my dear autistic daughter, who struggles so hard with her own understanding of others’ inner lives.

Now that I’m spending days being introspective, I wonder if my flawed upbringing ruined my sisters’ chances for happiness. (Not that I carry all the blame for that–it’s a parental issue, but I still feel responsible.) Can I have demonstrated enough of a lesson for my daughters even to see, to incorporate in their own lives? I hope they’ve learned somehow, even just by cherry-picking the past for clues. Here it is, 40 years later, and I don’t know if I’ve learned anything myself, other than to get through each day and desperately chase the loose ends that seem to multiply the older I get. No matter what I’ve achieved–and I’ve met many of my life goals–I still feel like I’m that kid trying to juggle so many adult issues armed with a spatula and an old pair of Keds.

When do you finally feel like you’re good enough?

Don’t assume, ask–a rule to live by

When I was a kid, maybe fourth or fifth grade, one of the highest honors you could get was to be chosen as a school Portrait of a young boy crossing guard standing on the road holding a stop signcrossing guard. Remember those kids? They would wait with the professional guard and help others cross the street, take care of stragglers, all that sort of thing.

At Thomas Jefferson Elementary School in Euclid, Ohio, in order to be selected as a student guard, you had to have all A’s and B’s and be a good, reliable student. I’d transferred to the school in fourth grade, so I didn’t get chosen right away, of course, and that was fine. So in fifth grade, I was ready when they announced the names, because I always had good grades and was a teachers’ pet kind of gal. But they didn’t announce mine.

So I worked even harder, and when they announced the names for sixth grade, I just knew I’d be included. They nominated other girls who lived on my street. They nominated just about every one of my classmates in the top reading group. But they didn’t pick me.

I was devastated.

What was wrong with me? I mean, I remember being one of those nerdy kids the cool kids picked on. My stepmother had an odd sense of children’s fashion, and I didn’t have a lot of friends. But this could have been a real self-esteem builder and verification to the other students that I wasn’t a total loser.

It took me awhile, but finally I got up the courage to ask my teacher why I hadn’t been selected. She smiled quite fondly and said, “Oh, Barbara dear, we didn’t think your parents would let you participate.”

So they hadn’t even given me the chance to ask if I could–the school officials had just made that decision for me. Expecting I’d be disappointed by my parents saying ‘no,’ they were being kind by not inviting me.  Forty years later, I still feel that disappointment and loss of vindication.

Raising children on the spectrum brings me into a confrontation with this issue a lot. How often do others–or even us as parents–leave our kids out of activities because it’s assumed they won’t like it/do well at it/be interested? Are we being kind when we shield them from potential failure?

If I assumed that Little Miss couldn’t deal with loud activities because of her sensory issues, she’d never have signed up for chorus, which is one of her favorite classes at school now. She loves singing at concerts. IMGP0394

She would have missed one of the greatest concerts we ever attended–and one she loved–because we’d have skipped it rather than helping her cope with a set of good headphones and a blanket to cover her head when it got overwhelming.

We might have assumed that she couldn’t compete with other children in the county fair contests, but she tended her flowers and won a ribbon every year. She attended dance classes, even though she opted out of the performance. That was okay with me, because I asked her opinion first. She wanted to dance with Miss Heather, but she didn’t want to participate in the end of season event. I don’t see that as someone who doesn’t finish what they start, I see it as someone who’s empowered to make their own choices for age-appropriate activities.

The boys, too, have been offered options–martial arts classes, music classes, theater classes, after school gaming sessions. They don’t choose many, not being particularly ambitious. But they get the first chance of refusal, which I believe is the right way to go.

What about you? Have there been events or activities you’ve offered to your children that you thought they couldn’t/wouldn’t like or be able to participate? Is it better to keep them from the disappointment of failure? What have they tried and succeeded at that surprised you?

***

VoodooDreams_w7507_medOn the same note, I will not assume that you don’t like free books, but I will ASK if you’re interested in this, the third book of the Pittsburgh Lady Lawyers series, standalone novels of romantic suspense, all with a heroine who’s a lawyer in the great city of Pittsburgh. VOODOO DREAMS is FREE for Kindle December 17-21. You may get one for yourself and as many friends as you think would like it for Christmas! Here’s the storyline:

When her big trial goes bad, corporate attorney Brianna Ward can’t wait to get out of Pittsburgh. The Big Easy seems like the perfect place to rest, relax, and forget about the legal business. Too bad an obnoxious–but handsome–lawyer from a rival firm is checking into the same bed and breakfast.

Attorney Evan Farrell has Mardi Gras vacation plans too. When he encounters fiery and attractive Brianna, however, he puts the Bourbon Street party on hold. He’d much rather devote himself to her–especially when a mysterious riddle appears in her bag, seeming to threaten danger.

Strangely compelled to follow the riddle’s clues, Brianna is pulled deeper into the twisted schemes of a voodoo priest bent on revenge. To escape his poisonous web, she must work with Evan to solve the curse. But is the growing love they feel for each other real? Or just a voodoo dream?