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?
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.
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.
But 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 the 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.
Of 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….
I’ve been meaning to visit here. I swear I have. It’s been weeks and weeks. But not because I had nothing going on. Not because I have no thoughts at all. To the contrary, I’ve been busting out of my seams in most aspects of my life.
I’ve had two novels already published this year, with CONVICTION OF THE HEART debuting in June, SECOND CHANCES coming in July and LOVE ME, KISS ME, KILL ME and THAT GIRL’S THE ONE I LOVE both in September. Plus I’m writing away on two novels already contracted for next year, and waiting on the results of three more I’ve submitted.
The publishing, of course, is the easy part–now comes the marketing and social media. Fortunately, I’ve hooked up with a number of other authors and we’re jointly navigating these waters. Many hands make not light work, but a wider reach, certainly, so I’m hoping that these books find their audience. For those who are curious, you can find the urban fantasy/sci-fi and horror books under Lyndi Alexander–see http://lyndialexander.wordpress.com for the most recent excerpts and updates. The romantic suspense, romance and women’s fiction will be under the name Alana Lorens, and you can find all the news for those, including a two month blog tour blitz this summer at http://alanalorens.com.
In addition to this, of course has been the law job, and the ongoing adventure that is our special needs roller coaster. Dr. Doo-Be-Do was diagnosed on the spectrum this spring, after a string of inexplicable bad behaviors and plummeting grades and social interventions at school, so he’ll be attending a special summer camp this year. The Captain continues in therapeutic foster care, unwilling to engage with the counselor or with us to even begin to work on the issues that got him placed and have to be remedied before we’re willing to have him return.
Little Miss is a bright star in our sky, academically improving bit by bit, enjoying the music and culture of her proper age group, fixing her hair like the other girls and setting her behavior based on what she observes in others. So there, doctor who said she’d never get any better than institutional level! She’ll be traveling with me this summer on a booksigning tour and research trip to Montana to learn about the Montana Vortex and visit the big woods.
(that’s her on the right, performing with her peers in the May choral concert–they sang Lean on Me, one of her favs from Glee. She was so excited!)
But I keep dreaming about driving in the car and suddenly finding myself in the back seat or the passenger seat, the car heading out of control. Last night it was even a dream with my new grandbaby in the front seat, not even buckled in, and me trying to use the clutch from the back seat. Sounds like I’m feeling like things are not under my direct command–that I’m not “in the driver’s seat.” Or maybe that’s just my interpretation.
Any dream analysis folk out there have two cents they’d like to pitch in??
And I promise I’ll try to visit here more often again.
While some may use a blog as a place to just spew all that awful emotional crap that you don’t feel your loved ones deserve to enjoy, most of us hope that our blog will be read by others, and the more “others” the better. This is one of the reasons to engage in the blog carnival. As you might remember, I hosted the Blog Carnival called Dessert May Come First–Or Not: The Many Flavors of the Autism Spectrum at the beginning of April. I had a lot of great responses, and I’ve decided to make it a monthly event.
Submissions are always open, as the carnival is ongoing. If you have a post in your blog that you feel might help others along their road, or give them a light moment, or connect with someone– or just open your blog to other folk who may not have had a chance to read it before– then enter your blog post here. If you’ve read a post elsewhere you really liked by a great writer on the subject of the autism spectrum, feel free to bring the carnival to their attention. Posts don’t have to be about children or for parents, or about adult Aspies, or classic autism, or coping, or NOT coping– but any of those are fine. Deadline for submission is May 7, for publication May 9.
This week, I’m welcoming readers from a number of carnivals, including today, the Rhythm of Write with more than 20 entries on the subject of writing. I’m also featured in two of the courses of the “Soup to Nuts” Blog Carnival which is a progressive dinner of goodness spread over five different blogs with enough topics to keep you well informed on every level: come by Health Plans Plus and Kilroy’s The Gonzo Papers and the other three to get all your good nutrients!
Welcome to the April 9, 2008 edition of Dessert May Come First– Or Not, the Many Flavors of the Autism Spectrum. This is the first edition of the only Blog Carnival entry to date to deal with autism, Asperger’s and issues of the spectrum. I’m pleased that we received entries from a number of different perspectives, and I’m proud to share them with you.
One thing we know about our kids with autism is that they are very literal. For example, this is how my daughter plays the game of “catch”: Papa throws her the ball; she catches it. Mission accomplished, game over. In this piece, lastcrazyhorn presents Falsehoods As Seen From An Aspie’s Perspective; posted at Odd One Out, where falsehoods are not just lies, they are much more.
I printed this post out to take to my soon-to-be-middle-school son’s IEP meeting, to see what we could do to bully-proof him as much as possible, or at least not have him punished for the backlash of a bully’s attack. Very thoughtful words for all of us with children from someone who’s been that kid. lastcrazyhorn presents Imagine This (A Narrative on Bullying); posted at Odd One Out.
Carol presents Race for a cure or journey towards acceptance? posted at A Different Nest: Embracing the midlife journey while mothering special needs children, saying, “This is my first carnival submission. I think it may be useful to parents of more recently diagnosed kids; and more veteran parents may (or may not) say “I’ve been there, too.” Thanks, Carol,”
While we’re on the subject of food, this may not be right on topic, but our kids will really like the videos, and we could use the story as a metaphor. TherapyDoc presents Eating Just Enough posted at Everyone Needs Therapy, saying, “I personally like dessert first. But take a look at this, have the kids look at the video. We can learn a lot from nature. And despite what I say, it’s best to try not to overfeed.”
That concludes this edition. Submit your blog article by the first Monday of May to the next edition of Dessert May Come First–Or Not using our carnival submission form. Past posts and future hosts can be found on our blog carnival index page.
And in other news…. I’m featured in other folks’ blog carnivals this week at Carnival of Moms in Law , the Scribes Blog Carnival , and a special repeat performance at the Best of Me Symphony. I’ve also got a two-segment appearance in the upcoming Soup to Nuts carnival, a multi-course meal spread over five different blogs coming on April 30, 2008, so stay tuned!
Thanks to all of you who participated in the Tourney for the Journey, NCAA fundraiser for Sierra Nevada Journeys. I’m proud to say we finished LAST out of 63 entries! Go Team Weird Stuff!!! *crowd goes wild* We may not know Jack about college basketball, but I think we are now the proud owners of a Reno Envy T-shirt!! (Get it? Reno, N.V.?? hahahaha…Westerners are hi-larious, right, Jayne?)
This week, I got an email from my mother-in-law, where my sister-in-law forwarded to HER this link. She thought it would be useful, apparently, because it was about Autism.
Now I appreciate the thought. But at this stage of the game, that article is pretty much useless to us. My son was diagnosed five years ago, my daughter, four. We’ve been through occupational therapy, physical therapy, speech therapy, hippotherapy, aquatherapy, TSS, BSC and autism support classes. We’re now looking at new therapies: music, art and mobile. We eat special mineral-packed vitamins daily and bathe in epsom salts regularly to detox. We make our own playdough with strong scent and textures to work on lingering sensory issues. We never go to the restroom in Panera; the acoustics echo. And the prime no-no of all time: self-flushing restrooms. Little Miss will hold it all day rather than drown in that overload of sound.
I’m far from being an expert on autism, of course, so I do look at articles people forward me, or books they recommend, and most times I manage to find something of use. I don’t know why it surprises me so much that people have no idea what we’re dealing with, even with the multitude of stories out there now on the issue. They’ve seen Rain Man, perhaps. (Not even close. Well, not close to the Rain Man behavior. This particular scene…maybe.) They’ve seen Amanda Baggs’ YouTube video. (Also not close, but still thought- provoking.) Lots of people think of us now whenever they run across something bearing the A-word, and by passing on what they find, they believe they help us. But they have no idea.
Our daily lives are steeped in nuance and prediction. Which child is riding in the car determines whether we can have the bass on in the stereo. Which child is in the kitchen determines whether food is being filched from the pantry. Which child has a substitute teacher predicts whether there will be a meltdown…or not. Which child we’re giving directions depends on how detailed they can be, at what level of language, and how many times we have to repeat them to get past the ADD. We have to know. Every minute, every day.
This particular sister-in-law is currently stated in our wills to be custodian of our children should anything happen to us. But she clearly has no idea what these children are like. She and my mother-in-law live in the same town in South Carolina. She has two sweet chubby-cheeked little girls who show no traces of the family’s genetic autism streak, who visit Memaw (the southern word for grandmother, apparently) every week and are the picture-perfect image of what grandchildren should be. If she ever gets our children, she’ll have to start from the beginning, and I think she could. But I wish she knew now. Just in case.
If people want to help in a meaningful way beyond sending the latest CNN headline, that would be great! Invite our kids over to play with yours so they can practice the social skills we drill into them. Have the kids for a weekend to give us respite from our constant hypervigilance, because we need to recharge, too. Learn about the therapies we’re using and come participate with the professionals. Offer to brainstorm with us for IEP meetings. Ask what we need and be willing to carry through. We’ll be grateful.
Albert Schweitzer said, “Sometimes our light goes out, but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this light.” Parents need support, because raising children of any sort is a tough job. Raising these kids can be even harder because of the specialization of the spectrum. When you step up to help rekindle our flickering energy, find out whether you should bring a match, a lighter or a flame-thrower. It will make a world of difference.