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!
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?
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. 🙂
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?
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?