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.

 

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?

 

Does the truth matter any more?

I can’t stand a liar.

Because the Captain’s alphabet diagnoses include Reactive Attachment Disorder and Oppositional Defiant Disorder, he’s found lying a very convenient way to get under my skin. We have practiced a no-tolerance policy for lying for all of my children, but him most especially.  Transgressions on their own carry one punishment; lying about them brings a second, sometimes harsher punishment. Most of them figured out it was easier to be honest. It might even lead to a pat on the head and a “I hope you won’t do that again.”

But don’t lie.

When we hammer on this seven days a week, wanting him to be a good boy and a good man, I wonder what lessons he learns from the news. Lessons from all these “good men,” who’ve worked hard and given themselves over to publc service, who wouldn’t know the truth if they tripped over it on a midday Sunday afternoon.

Anthony Weiner, whose judgment in Tweeting inappropriate photos is bad behavior enough to win him a punishment in my book, thinks he can actually get away with lying about it. Really? In this day and age? Has he learned nothing from John Edwards? Newt Gingrich? Bill Clinton? A trail of people who “thought I could get away with it” all the way back to Gary Hart and beyond? Really?

We work so hard to persuade this boy that it’s important to be truthful. That it is a sign of strong character. That it shows your respect for the person to whom you’re speaking. That the world just damn well works better when it’s based on honesty.

Maybe that’s why it feels like such a betrayal that these people, these “good men” in public service believe that not only can they break every moral and decent code for their own personal gratification, but then they feel it’s fine to lie about it. Because the risk is worth it.

That’s the same excuse the Captain uses: he thought the risk of getting caught was worth it.

Maybe I’m the one out of touch with reality. Why should we keep beating our heads against the wall to make him learn this, when it’s clearly not a trait that’s necessary to succeed in life?

We’re blanketeers!

As you may have guessed, we really enjoy Disney World, so when the ad campaign came out late last year to “Give a Day, Get a Disney Day“, I thought I’d see if there was something we could do together to volunteer.

The process was easy; search through hundreds of opportunities all over the United States as well as Puerto Rico and Canada. Give a day of service, and get a free day at Disney. At $79 per ticket, that’s a deal for us. So we started hunting.

In Albion, Pennsylvania, we found Project Linus, whose mission is to”provide love, a sense of security, warmth and comfort to children who are seriously ill, traumatized, or otherwise in need through the gifts of new, handmade blankets and afghans, lovingly created by volunteer “blanketeers.” ”

How great is that?!

As I have a huge closet full of fabrics, lots of pairs of scissors and a sewing machine, we went to work. The Doctor and Little Miss cut out squares, and I’ve been sewing for a couple of weeks now in the evenings, piecing together quilts.

The Cabana Boy has pitched in supervising, and pinning fleece backs on the quilts. Little Miss is also my official cutter–as I put together strings of squares, she cuts the threads apart and gives them back to sew even longer strings. It suits her sense of order.

We’ve had a really good time, and we’ll be donating probably ten quilts total by the time we sew up all these squares.

Two of our creations, with proud participants

You might have noticed I didn’t mention the Captain above. This is because like the immortal Bartleby, the Asperger’s child preferred not to. His exact words were “That sounds like too much work for one day.”

So we took him at his word. When we go to Florida later in the year, I expect he’ll stay here with a relative. The decision has typified his thought process of late; he doesn’t choose effort in any field, home, school or family. We hope by making him live with the natural consequences of his choices, maybe someday he’ll “get it.”

As I sew these bits of fabric together, I think about the children who might have them, and hope they can find the sense of love and family togetherness that we have, in creating them.

Barbara Bush said, “To us, family means putting your arms around each other and being there.”

Even if we can’t hug these children, these blankets can wrap around them and remind them they’re loved.

To find a chapter of Project Linus near you, see here.

When The Answer isn’t enough

So we go Tuesday to Watson, half holding our breaths, waiting for the experts to tell us The Answer.

And the Answer is: Sorry your kid’s broken, sucks to be you. You shouldn’t hold him to such a high standard because he’ll never reach it. Make it easy on yourselves.

What a crock.

Not that they didn’t try. Maybe if the Captain was still five and this was a first visit, a first diagnosis of Asperger’s, ADHD and Oppositional Defiant Disorder, and we hadn’t already tried just about everything we and the other therapists could think of, it wouldn’t be so disappointing.

The funny thing, looking back on the hour meeting, was how upset the doctors seemed to be that we weren’t ecstatic that we had the Answers in our hands.

I mean, to be fair, there were Answers. Some 30-plus recommendations of things to try. But so many of them were like, “Hey, teach the Captain about the ‘Stop,Think, Do’ protocol.” Really?  You think if it didn’t work in first grade, second grade, third grade, fourth grade, fifth grade, sixth grade, seventh grade and now eighth grade, that next year it will magically work?

The tests revealed that the Captain has good executive functioning and understands theory of mind well. I shared that with the school psychologist who has dealt with him for seven years, and her comment was, “He has NEVER been able to do those things. Ever.” The recommendations are for him to be in a social skills group. As the psychologist said, he was in them for five years and never internalized a crumb. So…what does this mean???

We had to laugh when the doctoral candidate who did the screening shared how she had just said, in a conversational interlude with the Captain, that one of her pet peeves was people cracking their knuckles and THE NEXT THING he did was start cracking his knuckles for the rest of the session. Oy. Welcome to our world.

And the fact that he tapped “Axel F” through the day. On the table. All. Day.

So we will share copies of the 30 page report with the school, the counselor, the wraparound agency and see who thinks they can help. Good luck, folk.

Another thought that’s crossed my mind is to sit down with the Captain and find out what he wants us to do. Since we seem to be much more invested in making him live up to his potential than he is, maybe we’re just ruining our own lives. If he really doesn’t intend to make any effort over the next four years, then should we really beat ourselves up and spend hours at medical offices trying to make him better?

When is a young person able to make these decisions? According to Pennsylvania law, “Minors ages 14 and older may consent to outpatient mental health examination and treatment without parental consent or notice.” So he can opt out any time, I guess. (Not that I’ve told him about this provision, of course. But someone will at some point. Then he’ll club us to death with it.)

And someone call Fox Mulder. Because the truth–and the Answer, apparently–is still out there.

Into the big leagues

In our rural neck of the woods, we’re pretty fortunate in terms of autism diagnosis and treatment options, first because of the medical card loophole which means that wraparound services, among others, are covered by the state, and second because most communities have autism-trained wrap programs. Up until now, we’ve been able to treat within a 30-mile radius.

But the Captain’s ongoing saga has finally driven us further afield. None of the medications seem to be having an effect and there are still multiple infractions at school and home each week. As the school psychologist said, “There are always social concerns with Asperger’s kids but they are capable of internalizing and learning appropriate behaviors-especially when they are as bright as he. Typically, as they get older, the Asperger’s tends to fade some. He is getting worse. I could be totally off base here but I have been thinking about it a lot and, with the efforts that have been put forth at home and at school, there is something else going on.”

So this week we went to Pittsburgh to the Watson Institute, which has quite a reputation for diagnostic programs, to see what else is going on. We spent an hour and a half with a psychologist and her intern going over the 19-page intake packet and other documents they’d requested we send, fleshing out info they wanted to have for testing purposes. Next we’ll go back for a full day of testing for the Captain, as they look at the Asperger’s, ADHD and attachment disorder possibilities among others. Who knows, there might be something brand new in the picture none of us have considered!

Once that’s done, we have to go back for a review session to go over the testing results. I told them that if we need to treat in Pittsburgh to be successful that we certainly would. 200 miles roundtrip is a lot, but hopefully we wouldn’t have to do it often. Pittsburgh is a pretty cool place; we’d just have to make it a family outing or something. But they seemed to think we could bring the results back here for our wrap people to implement. Either way. Just so progress is the upshot.

This and the unavailability of respite is taking a lot of our mental stamina. But we’re hoping to see through this to a more positive direction soon, perhaps as soon as the turning of the year.

We continue to focus so that both of the other children are able to have our attention as needed, and they seem to be doing well. Dr. Do-Be-Do has finally matured into an understanding that teasing can be gentle and loving instead of hostile, and his quick temper has faded. Little Miss is moving into regular conversation modes, initiating conversations and breaking into others’ conversations with relevant questions and material– a big step from never responding unless skillfully questioned. In with the good, out with the bad, that’s what we say!