Some days it’s as little as an understanding smile. Others, it’s a referral, recommendation or a helping hand. What would you like someone to do for you?
Some days it’s as little as an understanding smile. Others, it’s a referral, recommendation or a helping hand. What would you like someone to do for you?
On the inside of my front windshield is this smear:
It says “Tasha.” It has been there since fall of 2014. Yes, I have not washed the inside of my window for four years. And I may not.
This is on the driver’s side. On the passenger side are a bunch of toe prints, mostly, because Little Miss likes to ride with her feet up on the dashboard, but also a very faint “Mom.”
We were sitting in a parking lot in Meadville, across from the movie theaters, waiting to give my sons a ride home. It was steamy inside the car, and I amused myself by writing her name with my finger. The usual response to such an act was a snappy, disgusted answer–she’s pretty serious most of the time and doesn’t understand teasing.
But this time–THIS TIME–she saw what I did, and voluntarily wrote “Mom,” with a smile for me.
It was a moment that I’ll treasure always. An actual connection of intent and mind. It hasn’t happened often over these 18 years, believe me. But when it does, it’s glorious.
So no, I haven’t washed the window, and I might not.
For many years, this blog told stories of our adventures with autism, something that was completely new for me when my children were diagnosed, all three of them. We did the therapies, we made the concessions, we shared the stories and learned from all of yours.
During that time, I wrote a manuscript that starred a teenager with autism. She becomes part of a young adult fantasy tale, a quest to save the universes from dying. I based her on vignettes from my own children, the odd way her language comes sometimes, the black and white thinking that makes things like idioms a challenge–or unintentionally humorous.
After some attempts to get it published, I shelved it, thinking maybe the world wasn’t ready for this. But with the success of THE GOOD DOCTOR, and some other indications that autism awareness is becoming more mainstream, I tried again.
I am proud to announce that THE LOST CHORD is being published by Dragonfly Publishing this spring. Not only is there a great story told, but the other teens in the story learn about autism, and the value of Bee’s thinking outside the box. Here’s an excerpt:
Miss Fry appeared puzzled. “Yes, Bee just came to get that. She said she couldn’t take the whole project, but she needed that rock.” She shrugged. “It’s hard to tell with her sometimes. But she’s come a long way.”
“I—I don’t know a lot about autism, Miss Fry. Is she gonna be okay sometime? I mean, will she get better? You know, be like everyone else?”
“Will she ever be like you, or me? Probably not. There’s an ongoing debate among the Powers that Be and parents about ‘curing’ those with autism by various means, but it seems to me that would be doing those individuals a disservice.”
“You mean they want to be—broken?”
“They aren’t broken, Cory. They have many unique characteristics and gifts that might be changed forever if they were made to be ‘like everyone else.’ But certainly we can help them communicate better, succeed in their own way. Like this.”
She tapped the poster board with a smile. “As an independent student, Bee can accomplish a small focused project with excellence, whereas in a class of thirty students, she gets lost and can’t be heard.”
I’m very excited at the chance to teach people about the wonders of our kids. One thing that would help would be reviews by people with knowledge of the subject. I can get you review e-copies in advance of our May launch, if you’re willing to read and share your opinion of the book. If you like it, I’d be glad to guest post on your blog as well, to spread the word.
You can also like our Facebook page and register at our blog to get more information as we get closer. Endorsements would be great to add to our page as well! Fans of the book will be invited to join a special club called the Chordians, where they will get special prizes and more content.
If you can help me out, and are interested in any of these options, please contact me at lyndialexander at gmail dot com, or leave a message in the comments on this post. I hope you’ll join me in the next step of this grand adventure!
When I was a child, visiting my grandmother’s farm in Indiana, I found her old house fascinating. It had been built in the late 1880s, and there seemed to be nooks and crannies everywhere.
Upstairs, there was my grandpa Joe’s bedroom, which I never fully explored, even when he was out in the fields. The curtains were dark and red, shadows filling the corners. When I read Jane Eyre, I imagined his closet was the room in which poor insane Mrs. Rochester was confined. Maybe that’s why I never went in.
Polished wood floors set the stage for the formal parlor with velvet chairs, the room that was never used except for taking official photos of the family. The basement was dark and spooky, vaguely hitched to the memory of tornadoes for me. We must have hidden there a few times. My mother told the story of a tornado passing right through when she was safe, down the angling road at the school house. When she walked home, my grandmother’s curtains were in the road, blown there by the wind.
But the most cunning place in the whole house was the little closet under the stairs. No budding wizard lived there, unfortunately–just a tiny rack for coats, and a hard chair next to a small table where one could find the telephone.
Most people had to bend down to get inside, since the upward climbing stairs were above the space. Games and other things filled the angling back of the closet, but that telephone was a lifeline back in Bunker Hill, both for my grandmother and for the lives of others that she touched.
When we lived across the road in the 1960s, the phone was on a party line. You had to wait your turn to make a call–but oh, the things you heard, if you were rude enough to listen in. My grandmother would have been shocked and horrified to even consider such a thing. I doubt her neighbors were always as courteous.
She used the telephone to connect with others. As a farm wife, she didn’t always get out of the house into the community, especially in her younger years. There were people to feed, and chores to do. She called to set up her precious 7:30 Club, where ladies of the community would meet monthly in each others’ homes to visit and play cards.
The phone calls I remember most, though, were those on weekend afternoons, when she went in and left the door barely cracked open. She volunteered for the Red Cross, and her job was to relay calls from soldiers to homes, and from homes to soldiers. I sat outside the door and listened to the stories, bad news often, but sometimes good things like the birth of a child. That tiny closet became a microcosm of the world, gathering all the feelings and sympathy passed on from one caller to the next, bringing the news that really mattered to those who needed it most.
Why was this mission so close to her heart? I suspect it was because of her brothers, my great uncle Cmdr. Jim Moore, (left) who was a Navy veteran aboard the USS Antares at Pearl Harbor on Dec. 7, 1941, and Capt. Paul Moore, who was a POW of the Japanese. She, of all people, in a pre-social media time, would know how important it was to have any information about loved ones far away from home, serving our country.
I’m proud of her work. As much as she had to do to run a huge farm, she found time weekly to improve the lives of others.
Regular readers know that I’ve been on quite a journey with my third family–three kids on the spectrum, and all of them a little different even from each other. Well, we crossed a milestone this week–Little Miss turned 18.
Yes, they’re all adults. Under the law.
The two young men are both working part time, and living with their father. Little Miss is entering her second senior year, now in a school with a superior program in terms of directing these kids to find meaningful work. She’s interned over the summer with a local barista, in order to strengthen her position applying for a formal internship at Starbucks this school year.
But I can still hardly let her out of my sight.
She’s very polite, not always aware of stranger danger, and she can’t always handle herself well. I push her to do her own talking at doctor appointments–which works well until she announces that she has “severe depression” after watching too many drug commercials on tv. In reality she’s one of the happiest people I know. Really. That one took some explaining.
Suddenly I see why the teachers were nudging me to get her a guardianship. She is entitled to do whatever, now. She can stay out all night, she can get married, she can….
Fortunately she doesn’t want to do any of those things. She has a boyfriend at school, but it’s in name only. They’re both pretty immature. An occasional handholding is sufficient, and I’m surely okay with that.
Gradually I’ve been urging her to do some cooking, some cleaning. Wash her own clothes. She’s pretty responsible around the house. But it’ll be some time before she’s ready to live on her own. If ever. (I’m finally being realistic about this–I always thought she was running behind her peers, but that she would eventually catch up. Now I’m not so sure. But we’ll see.)
Any of you who’ve gone through this, I’m open to suggestions. So many parents of neurotypical kids shoot for 18 and done, or maybe, college and done. What do you do when you really don’t know when “done” will be?
Asheville, 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. 🙂
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.
She 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, with her own money, despite a barn full of sensory distractions.
The matches were hot and heavy, and she got to see Asylum, her pictured 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, “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 went by the name Jimi the Flying Hippie. How could I not cheer for Jimi?
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*
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 satisfied, 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.
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 crossing 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.
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?
On 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?