When they finally grow up–but not really

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….

Huh.

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?

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A day in the LEAF

LEAFAsheville, 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. 🙂

 

 

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?

 

Just when you least expect it…

Still not sure how I feel about this one.

Dad took Dr. Doo-Be-Doo down to the optical place at the Downtown Mall today to get his eyes checked and a new pair of glasses. I was in court, so Little Miss rode along with them. The Doctor finished his exam, and he and his dad ducked around a wall display to choose some frames. Dad apparently told Little Miss to wait on a chair inside the optical shop while they looked.

So I come home from court and Little Miss is walking up to our driveway.

Yes. Walking. Up to our driveway.

I climb out of the car, clearly puzzled, and ask her where her dad dropped her off. (We had an appointment after we got home, so I thought maybe he was running late and just dropped her nearby so he could be on time.) She said he didn’t drop her. Her explanation was, “I got lost at the mall.”

*blink*

So she wandered out of the optical store and realized she didn’t know where her dad was. Her response is TO WALK HOME, a mile and a half away, by herself. Her main comment: “It’s a very long way. I’m tired.”

Besides being blown away that she even knows how to get to our house on foot from the mall (thank heaven we always emphasize ‘which way do we go now?’ when we’re driving!), I’m now putting myself in Dad’s shoes at the mall with a missing autistic child. Holy cow.

I call his cell but he’s apparently on it, calling my office. So I call the optical place, and they track him down, practically delirious, at the mall, where he and the Doctor have been up and down the halls 18 times. So they come home and he’s growling and angry and amazed and grateful all at the same time.

What’s Little Miss’s response to him? Tearfully, SHE APOLOGIZES for making him worry.

I kept reflecting on this the whole time we were at our appointment an hour later, our first family therapy session with her big brother, who’s been in therapeutic foster care for three months for making us all crazy because he only thinks of himself, can’t take care of anyone, let alone himself, and wouldn’t know an empathetic thought if it landed on his head and split it open. Even in that session, he still couldn’t seem to understand what he did that set the household on its edge. And an apology for all the angst and tears? Forget it.

I guess that’s why they call it a spectrum. We sure seem to roll from one end to the other. We have now explained to Little Miss that better practice is to go back to the last place she saw the parent she was with, instead of leaving the facility. Hopefully, it’ll stick. But how can you argue with the safest place in the world being right back at home?

Just another day

Some readers have asked lately why I don’t write as much about autism any more. “How are the children?” they want to know.  It’s kind of funny that this blog started out to connect to other autism families, to learn, to share, to get through the days, and yet three years later what we find as we hit the bottom line is, we’re all alone in this. And it’s not necessarily progress.

Nine years now, we’ve had the diagnoses to work with. And work we have. Hours of meetings, consultations, hospital time, psychological time, special teachers, special classes. The dedication of our lives to this process of helping these three children overcome the cards they’ve been dealt.

Doctor Doo-Be-Do, for the most part, has succeeded in his quest–as much as a boy just this side of adolescence can, I suppose. He’s still disorganized, still emotional, and has a hard time mastering the art of anger. Some of his flightiness is likely ADD, some is hormones, and– he’s a boy. Inexplicable to a mother who’s raised five girls.

He’s going back into therapy this week, mostly to learn to deal with his reactions to other people–how anger and misplaced sarcasm isn’t always the best choice, for example. And how to deal with his brother.

 Little Miss has spent all but the first year of her life in some sort of therapy, whether it was occupational, physical, speech, cognitive, hippo-, water, and now a round of medication. Incredible.

This week, she’s beginning work with a play therapist with the intent to strengthen her language skills. This therapist has been part of her life since she was about four, when all Little Miss could do at their intake appointment was sing the “Chicka-boom” song. She couldn’t answer questions, she couldn’t tell one day from the next, she had no idea of her place in the scheme of life. Now Little Miss has successfully overcome the hurdle into young womanhood, and she’s preparing for the entry into junior high school next year, with half of her day mainstreamed in regular classes, where she does projects extremely well, but tests less so.  In fact, Little Miss has been commended this year for her extreme empathy in assisting the little ones in the beginning autism support classes, helping them come to the right class and entertaining them till the bell rings.

I’m kicking around the possibility of home schooling her during her eighth grade year to really work on her receptive and expressive language skills as well as her life skills.

I’d add the depth of travel, which she loves, to give her tactile, hands-on experiences to flesh out her capacity to file words away and acquire the processing ability to keep her language available for use. With a firm plan of objectives from this long-time therapist, we could work toward goals, both mental and educational. Taking a truck and small camper, we can expand our world. Maps will trace geography. Museums, state and national park resources really bring science language home. Planning trips solidifies executive functioning skills; tracking our budgets enhances practical math skills. We will also read whatever we can get our hands on to make her language the same easy, effortless exchange it is for so many of us.

          If I can pull this off, the process will be documented in a book about that year, a story told in personal moments, therapeutic breakthroughs and pictures. B has suggested a companion volume to be written and documented by Little Miss herself–how interesting is that?? I hope her language expands to the point that’s possible. Maybe her volume can be primarily pictures. That’s the point, after all, to show how creative work can help give a person opportunities to become themselves in a world that doesn’t always see things their way.  Other autistic children might relate better to a book they can see without having to process words, too. She’s come so far already. What a gift for all of us if she could enter high school on the same page as her peers.

And then there’s the Captain.

After his ‘stellar’ behavioral record last year, several suspensions for outbursts and attacks on other students, falling grades, disgusting personal habits, the school sent him to a partial hospitalization program at the beginning of last summer. It was supposed to last till school began in September. Then they said they hoped he’d be done by maybe November. Then January. Now they’re hoping to effect some change by the time school begins in September this year. Maybe.

So far they’ve been able to make him stop hitting people, when it’s a ratio of two staff to ten students. He’s still disrespectful, angry, has tantrums–all the ODD stuff–and he doesn’t care to please others, and believes that he always does everything right and everyone else hates/sabotages/screws him over–all the RAD stuff. He’ll use the Asperger’s as an excuse, when anyone asks him to do something– “You can’t expect me to do that, because I have Asperger’s!” –but he won’t take time to learn about the condition, and the fact that Asperger’s people are just as successful, if not more so, than any other human being. They just have to make an effort first. An effort of any kind.

His hatefulness crosses over to home, too, and we are all treated to his outbursts and refusals to carry his share of responsibility. On a recent trip, he stayed home because of a variety of circumstances, and his little brother was a different person. Free. Happy.  One of those moments that really brings home how oppressive it is to have a child who sucks the life out of the family.

The doctors at the school seem to have the attitude that the Captain is just going to be like this, so we’d best adapt. But after nine years of therapy, including two years of 30-hour a week TSS and now 30-hour a week intensive partial hospitalization for the better part of a year, what else are we going to do? If the professionals can’t handle it, can’t make him see himself, can’t show him why responsible behavior and ambition and caring for others is a good thing, how can two human parents ever hope to?

So, true. I don’t have as much to share about our ongoing experience with autism on a regular basis, because it’s sort of settled into our lives. We still deal with it every day, sometimes on high notes, sometimes on low notes, but it’s now part of the routine, not something we can do something about. But the end of the story hasn’t yet arrived–don’t worry. I’ll keep you posted. 🙂