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.

 

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?

 

Florida fun!

Travel is really one of my thrills, and I was thrilled indeed to make a pilgrimage to my old stomping grounds in south Florida last month, with some new experiences thrown in!

My traveling companions included the ever-faithful Little Miss, but we also had our exchange student Yurie, who packed DSCN0542and re-packed her belongings for her trip home at the end of the visit, and daughter M and her three children.
We missed the worst of the rain, but we did get the south Florida heat square in the face–after all my intervening years as a Yankee, I have to admit I was a bit of a wuss!

Also it was my first long solo trip at the helm of the RV, so I was a little stressed and intimidated by that for awhile, since I’ve been the only one who’s managed to run into something with it. BUT NOT THIS TIME! YAY!

 

We landed at Pensacola just long enough to pick up our passengers, then headed out to the Florida Caverns in Marianna. I sat with the cocker spaniel in the RV while the rest took the cave tour. Little Miss, though, will always remember how the tour guide showed the control panel with the switches for the lights and the one he said was for self-destruct. Apparently she screamed at him not to push that one, in a dead panic. Overall, not bad advice, but still…we do tend to take things literally. 🙂

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Then south to Naples, and east to Everglades City, where we took a trip on an Everglades airboat–something I’d always wanted to do but never had, while we lived there. I was thankful there were headphones for those with sensory issues, and it made it so easy to ask questions! We saw a manatee, some pelicans, and of course alligators:

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But I think we all were excited by the race through the mangroves–not exactly the tour of the “River of Grass” I’d envisioned, but still quite an adventure:DSCN0553

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Then it was on to the Florida Keys, where we’ve spent many happy weekends.

Camping was easy at the state parks, thanks to M, who’d made our reservations many months ago. We were joined, by fortunate coincidence, by daughter D, whose family happened to be going the same time we did, and though we all didn’t fit in the RV, we did camp next to each other at Bahia Honda (one of the most beautiful beaches in Florida) and we shared a big dinner one night, which was nice.DSCN0571

The water off those bridges in the Keys (even the Seven-Mile one!) is SO gorgeous, tones of blue, green and everything inbetween.

 

We took one day away from those wonderful beaches and went to Key West, where I researched an upcoming romance book with pirates. It’s always been one of my favorite places–we honeymooned there. Still as beautiful today:

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Here’s St. Paul’s Episcopal Church, which had a fabulous royal Poinciana tree blooming in front. DSCN0585

 

 

 

Also a giant banyan tree, where the roots grow down from the branches into the ground:

Of course we stopped at the Southernmost point in the continental United States:

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After a bit of shopping, we went to dinner at a Cuban restaurant with the whole gang:

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But the real beauty of the scenery was just to sit and take it in. Especially at the quiet points of the day, like this moment at Bahia Honda with Emma:

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More on the second half of the trip coming in Part II.  🙂

Never give up, never surrender–a way of life

So, as many of my readers have commented, I have a pretty busy life, trying to balance the day job with the writing career and still take care of a family and breathe once in awhile, too. Fortunately, as the children have grown up, their special needs have been addressed, for the most part, and don’t affect the day-to-day living situation as much as they did in the past.

That’s a huge accomplishment in my book. Two out of three of the children have overcome their ‘disabilities’ to the point where they can function alongside their peers on a day to day basis and also contribute in the home setting. The Captain is still struggling with his issues, but we encourage him in his therapeutic placement and continue to hope that he will do the same, someday.

Because so many people were asking how I can manage all these things at the same time, I’ve written a post about it for the readers/writers site The Polka Dot Banner.

I left out the part, of course, about how I do all these things because I’m a woman and a mother and we just do what we have to do. The political candidates can bellyache about all those who complain they need help from the government to keep on surviving, but I’m here to tell you that I know a whole subculture of parents of autistic and other special needs kids who bust their butts every day to keep those kids moving forward, no matter what personal sacrifices they have to make. I applaud each and every one of you. Keep on keeping on, even when it seems like no one else is on your side and you’re ready to just lay down and surrender. Don’t. It pays off.

A breath of fresh air

This weekend the Cabana Boy and I took a break. We left the children with my daughter’s day care business and we went out of town. Not far. Just to Pittsburgh. But as far as we were concerned, it was a world away.

Not only did we deserve it; our kids deserved it, too.

Respite is something a lot of parents of children with special needs hesitate to do. We worry about what might happen to our children in the care of someone else. We worry about what our unruly children might do in someone else’s care. We worry about …well, we worry about everything. That’s what we do, pretty much 24-7, and exactly why we need respite in the first place.

In the past month, I’ve been busy coordinating the dispersion of the children to their various therapeutic units, one from7-3 each day, one from 8-4 each day, one from 8-11:30 Monday through Thursday, and then arranging care or activities for the half-dayer the rest of the week. I’ve kept track of who needed what medication and when new needed to be ordered and picking it up so they had it. I’ve run Dr. Doo-Be-Do through a new evaluation so he can have some mobile therapy and TSS before school begins, per the recommendation of his camp folk. This on top of the usual, back-to-school shopping, my work, dad’s work, running a garden to feed a dozen people, and daily life with fibromyalgia. (I’m not even counting the book stuff. That should be icing. Kind of.)

So the Cabana Boy and I were a little whipped.

But by Friday afternoon, our attitudes improved considerably, just knowing the children would be well-taken care of, and we could drive south, debating plot lines in the Elf Queen sequel (which he’s very good at, btw) and feeling the tension melt as the miles passed.

Getting two solid nights’ sleep–priceless.

A little flirty, alone time? Ditto.

Meals at Bahama Breeze and Jimmy Wan‘s that did not involve either Happy Meals or macaroni and cheese? Simply amazing.

Shopping through thrift stores for special bargains without wondering who was getting lost and yanking on the sleeves? A real blessing.

But the best benefit of the weekend is coming home refreshed and able to handle all the threads that bind up our lives anew. I’m sure when we’re stressed and crabby, we’re not all that attractive to the children, either. So we could come home to them with new clothes for school and special treats, and they’re happy and we’re happy. Sounds like a winning proposal, right?

Hopefully you have family or friends nearby who can help you out with a night or weekend away. If not, there are professional organizations who provide respite services. This autism site has a valuable list of questions on how to choose a respite provider and some direction as to where you might go, if you don’t have anyone in mind.

The important thing is that you stand up for your chance to take care of yourself. Because when you suffer, so does your child. And no one wants that.

Up for a visit?

I’m guest posting over at Jean Myles’ blog today on the subject of marriage and autistic children. Jean has two little boys, one with autism, and she now works at home so she can make sure her little guys have all the special support they need! 

I know I’ve talked about the subject of marriage stress and divorce before, and many of you commented on the study I cited.  But you know, for all the autism parents I know, so many of them are on the edge or have divorced over the issues their children have, that I stand by my position. It’s a hard life. Jean’s focus on early intervention is outstanding–what a difference this makes, as we’ve seen in our own house. My best wishes to her and to her readers.

Take a break from the summer heat to come by and say hello!