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!
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.
is equal to the love you make…
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.
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. 🙂