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. 🙂

 

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?

 

Summer trip, Part Two

DSCN0611I’ll start with the view from our campsite at Curry Hammock State Park which was interesting in a number of ways, including how close we were to the beach, although pursuing the wildlife was much more fun. The park is “green”, so the restroom/shower facilities were all specially designed to fit with the local ecosystem.

The wildlife that popped up all around our campsite included some fabulous green iguanas like this guy:

igianaThe area, though is known for its blue crabs, which had hideyholes in the ground all over the place, several around the campsite itself. My daughter had the chance for prolonged conversation with some in the mornings, since she is an early riser, but I didn’t get to see so many.

Out time in the Keys sadly came to an end, and we headed north, where M and kids rented a car to head home, while we stayed in Satellite Beach with a friend of mine from the old newspaper days. It was two days full of fun, great food and success!new adventures.

Linda’s friend Rob was so generous with his time–one afternoon, he took the girls to his neighbors’ dock. Here’s the result–they each caught one!

success strikes againAnd yes, Mr. Redfish was delicious.

While we were there, we also had the chance to visit Kennedy Space Center. Yurie was excited to go there because of the rocketships and the history. Little Miss just went for one reason:

DSCN0637Yes. Angry Birds in Space. A whole building devoted to it, with a maze, and games, and the opportunity to sling birds at pictures of pigs. What says space travel more than that?

She actually did pay attention to several of the other exhibits (though she was still pretty obsessed with the Birds), as she demonstrated in later conversation. We took a bus ride out to see some of the outbuildings (including the one where Rob works!) and then came back to sit through a mock-up of a moon landing, which was cool (especially for those of us old enough to have watched it on live tv) .

DSCN0630

DSCN0632It was great reconnecting with Linda. We’ve both gone on to interesting lives, she as a counselor/teacher and me as an attorney/writer. But to take just a moment to relive those escapades as young writers–driving out onto the flight line at the air force base, checking out the drug hangouts in Florida City and nearly getting nabbed by the DEA–was awesome.

Then a sad day as we drove to Miami for Yurie to catch her plane home to Japan. We all survived the logistics of getting her to the airport during rush hour in Miami in a giant RV, AND of getting her multiple suitcases to the baggage carrier successfully (and the fact that the Miami Heat apparently won some sports event and we could have been marooned in city traffic for days, but we didn’t know it at the time). Goodbyes were tough. We’ll miss you, kid.  😦

The next leg of the trip was to Fort Pierce to visit another old friend of mine. We were both a little worse for wear for the years that had passed, and both dealing with chronic pain. But it didn’t stop my friend from being a delightful hostess, and we had a wonderful couple of days. Here she is with her friend going to a Mad Hatter party:

DSCN0642She looked great, and I’m so glad we stopped to see her. She lives in a beautiful condo overlooking the Atlantic Ocean, and invited me to come stay with her on a more permanent basis. Have to admit, I’m keeping that in the back of my mind. There are worse choices.

Little Miss was more delighted with the two miniature dogs living there:

DSCN0644They were cute, but definitely fonder of her than of me or other visitors.

Finally, north to Asheville, to complete our travels, to visit with K and her lovely partner L. We always have a good time with them, and they work so hard at creating a life together with L’s son, even though the state of North Carolina is much less than helpful in its acceptance of gay rights. We took the chance to do nothing a lot of the time, preparing for the long drive home, and took advantage of the KOA’s nice facilities, pool, park, etc. to just let go.

DSCN0654poolAnd of course we visited L’s new job–Asheville’s Ultimate Ice Cream shop. With unique flavors like goat cheese and bing cherry, chocolate and ginger, and even caramel with blue cheese (to DIE for…), it was an amazing tastefest. That was before we got the maple and bacon ice cream.

Yes, I said bacon.

It was unbelievable. Please put it on your bucket list. Right now. I’ll wait while you get a pen.

Hard to believe all this fit into 16 days, but it had to come to an end eventually. What didn’t come to an end, of course, was the pile of work waiting for me when I got back. But then that’s what the real world is about. Time to start dreaming of next year’s vacation!

 

 

A grown-up night out

One thing we’re not good at–and I’ve said this before–is making sure the Cabana Boy and I have time away from the kids with other adults. It’s something parents of special needs children really need to do as often as they can, to replenish their own sense of identity. As the folks at Hopelights say:

Think of it this way… when travelling by plane the flight attendants tell you one very important thing – if the oxygen mask comes down, put one on yourself first, so that you are then able to put one on your child. Respite is oxygen. We hope you find some room to breathe.

Usually if we can get away, it’s usually just a couple of hours with each other at a movie or dinner,  hurried through, worrying the whole time what the children might be up to. Since the children have been diagnosed, we have cut back our interaction with others in the community, for a variety of reasons. Church became difficult when behavior issues broke out in Sunday school class. It’s hard to ask parent volunteers who are untrained to deal with the Captain. Even his regular special-ed certified school officials gave up this year, you know? Our other interests tend to be solo pursuits, writing, and gaming, so our time with others is limited.

Both of us have worked with the Meadville Community Theatre, both on stage and behind the scenes, but whereas before the diagnoses, both of us could even be in the same show (even though we were never on stage at the same time….weird…) or do lights and sound together, now, it’s usually just some quick exchange. E will program the sound for a show or design the light setup, or I’ll do a review or some sort of PR thing. We miss it, but finding responsible child care for a 15-year-old who can’t mind himself is tricky.

Arrrr....'tis a fine party ye have thar....

All the same, the annual awards get-together came along last night, and we decided to go for the first time in 10 years. We sat with my friend Pam, who’s helped me with book promotions, and saw a lot of friends we hadn’t seen for awhile, including my Steel Magnolias co-star Ann DeWalt, more recently featured here as an anti-war protester, feistily scuffing it up with a bunch of whiners.

The party was dedicated to 30-year MCT veteran Jim Snyder, who with his wife Cindy are moving to Seattle later this year to be near their kids and grandkids.

Many people wore costumes from shows they did with Jim– like the guy in the yellow flower, who was eaten by the monster flower Seymour when Jim did Little Shop of Horrors. Or the dreidel costume he wore in one holiday show. Yes. A giant dreidel. Only theatre people…

The evening progressed with a lot of folk re-connecting, and a lot of theatre talk. The time when Jim did… the time when Megan did… digging old wood out of the Hole…Emmy running all the way around the building after she went off stage to sneak into the audience to catch Patti’s performance in Flamingo Road.

Jim and Cindy arriving

I’d forgotten what a great group of people these are, and how good it felt taking some time away from not only my office and its emotional toll of broken families, but also the broken family we have at home.

The evening definitely sparked my conscience to make a more determined effort as the summer and fall come to pass to join in some activities outside of work and home. The kids are getting older, and even though they’re not as responsible as other kids their ages, they can be left together to watch each other for a few hours.

Sue with her Kit Wagner award

One project we’re very excited about is the possibility of helping the Unitarian Church to set up a social place for gay teens in our community to hang out–somewhere welcoming that they’re hard pressed to find now in this town. I’m sure the experience of acceptance my daughter had when she came out is not what the average young person finds in this somewhat conservative community. I’m really looking forward to seeing how we can make this happen.

And who knows? The kids are old enough to help with productions, although their attention spans are limited. And sporadic. But it could happen.

And I guess it should. Because we can best model how to be whole people if we actually are—instead of only being people who live behind a label. Maybe we don’t have the diagnosis, but “parent of child with X” sometimes carries its own difficult burdens. Better to have a chance, every so often, for this kind of a smile and time to breathe that oxygen, for everyone’s better interest.

(Thanks to Pam Micosky for these fantastic pictures!)

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.