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. 🙂
A phenomenon many divorce attorneys like me encounter each year between mid-November and January 2 is the sudden drop-off of clients and client activity. Yes, ladies and gentlemen, it’s the holiday lull, the last-ditch effort to grasp the fast-fading warm feeling of family or at least the rational attempt to try to preserve the illusion that ‘everything is all right’ for the children.
Often, the holidays are a happy blurred memory batch from childhood, with ham dinners with families gathered at grandparents’ house, favorite (and not so favorite) presents we’ve received over the years, candlelit church services, carols and much more.
Overlay this with the commercial media blitz of glitter, bling (every kiss begins with k?? Who knew? Awesome!) and price cuts, and the secular Holidays take on an almost sacred tone of their own.
We want our children to experience this, to feel whole, to be glad and warm and loved. Often we are able to swallow our own pain–or drown it with well-doctored eggnog– long enough to let the little ones experience Santa and the magic.
But what we also see as the years pass is the carving up of these happy days with a broad knife, dividing the time the children “must” spend with father, mother, siblings, grandparents and others. When parents cannot look beyond their own needs to compromise with their children’s lives, the court will do it for them, with lack of emotion or feeling to guide it.
Four hours for mom. Two hours for grandma. Twelve hours for dad. Splitting the day so you have to be hauling kids on the road for two hours of the holiday you’d all rather spend at home. Weather? Schmeather. The court order says… Alternating years, so every other Christmas your hearth is empty and dark with no children to celebrate. Christmas Eve. Christmas Day. Thanksgiving Thursday. Friday? Maybe, if you’re lucky, a few extra days of the vacation when the children can have a parent all to themselves without other obligations.
In my generation, divorce was not as prevalent as today, and we visited in summers only, so our holidays, though father was absent, were not disrupted. My children, however, were subject to visitation orders, and spent most holidays with their fathers, which was fine with me. Holiday is a state of mind, as far as I’m concerned. You can have a special day on the 23rd, 25th, or even 31st, if you put your mind to it.
Many more children of my kids’ generation grew up in split parenting situations, so maybe for them, it’s not as traumatic for their own children to be visiting other households during these magic periods. And often, no matter how hard you’re trying to hold things together, the children are well aware of the tensions underlying the surface. If those tensions become toxic, then perhaps separation, even this time of year, could be the right choice, for everyone’s peace of mind. It’s important, though, not to compete with each other to “buy” the children with stuff.
But even if the magic fails on one front, there are many more, like these suggestions from Suzy Brown. As she says, “Holidays are about peace and sharing and gratitude and love. During tragedy, or divorce, or heartache we have to reach down and find those core things at a deeper level, a more meaningful level.”
It’s a tough time. I’m going through the single parent thing again for the first time in 15 years, and it’s a big readjustment. But it can be done. If you feel that you can’t hold on, for any reason, please seek professional help, whether in the form of legal counsel, psychological counsel, or just a heartfelt cup of cocoa with a good friend or close relative. Take time out for yourself. Most decisions about situations (absent actual danger) can be put off for a week or two. Give yourself and the children time in as de-stressed a manner as possible. This will pay off as they learn coping skills from you they can use all their lives.
I’ve debated writing this post for several weeks. Overall, I was worried it would sound whiny or complaining, and I honestly try not to be like that (at least not too much). Most people have busy lives and problems of their own and don’t have time to invest in my issues. I’ve finally decided to write it because it might inspire someone else to take control of their life, before it’s too late.
Fibromyalgia has been a part of my days for about 10 years now , and I’ve written about it from time to time. It’s steadily gotten worse to the point where I felt pretty handicapped. Going to the court house for work was difficult–if I couldn’t get a parking place nearby, I had a hell of a time getting there. I gave up my house for a small apartment with minimal stairs. My marriage suffered and eventually ended. Daily chronic pain was unrelieved by the mild exercise I could do without causing more pain.
My grown children were sympathetic, and we tried to work out a plan where I might go stay with one of them, so I didn’t have to manage a place on my own. Of course, Little Miss would have to go along, and she’s still in school. And I wouldn’t have a job. Or insurance. And they’re not keen on giving disability for fibro. You know, since it’s not one of those “real” diseases.
Besides, why should any of that be imposed on one of my girls? Not their fault. They’ve got their own lives.
So, nothing worked out. Better yet, this year I’ve had a steady stream of diagnoses. Both knees’ cartilage totally destroyed. Torn retinas causing flashes in night vision. Sleep apnea. Neck and back arthritis. (Getting old just isn’t pretty, folks.)
Overwhelmed, I started wishing that whatever was wrong with me would just escalate and end me before the summer came and I had to make a decision. If I was dead, I wouldn’t have to deal with it any more…the day-long pain, the things I couldn’t do for myself any more, the knowledge that there would likely be more and more things like that. Sure, I could keep taking two Vicodin a day and muscle relaxers, and more and more anti-inflammatories that were eating away at my liver. It wouldn’t make the pain vanish, but made it tolerable most days.
This is from someone who has a reasonable income that provides for our needs, an education, transportation, food on the table and a roof overhead. I can’t even imagine how this goes for someone who doesn’t have these things.
And then in late August, I got the topper–gout/arthritis and rheumatoid arthritis. For those who don’t know, the latter is an autoimmune disease. My body had become so dense with inflammation, that it was attacking itself, no longer able to differentiate what was good and bad. That’s why my ribs ache. That’s why my knees are shot. Probably the retinas, too. I’d done it to myself.
That could have been the end.
Instead, I found myself galvanized into action. I’m still not sure what the difference was, but finding myself under official attack must have kicked my competitive nature into gear. I started reading about RA and some of the treatments out there. I consulted with some friends about it, what worked for them, what didn’t. One of my daughters had a family that had gone on the paleo diet to help with my granddaughter’s thyroid issues, and she extended a hand. My sister Shawna had recently received a spinal arthritis dx and she was dealing with the same thing. I signed up for a monthly healing seminar. I have support.
I could do this.
The dietary changes to reduce inflammation seemed like the best first step. The next day, I went to the grocery store, armed with the AIP list of foods to eat and foods to avoid, and I’ve followed that for over six weeks now. Is it a bitch to eat no dairy or eggs, no beans, no nightshades (tomatoes, peppers, eggplant, potatoes), no grains, no nuts or nut products, oils, etc, ? You betcha.
But my pain has dropped about 75%. Yes. I said 75%. My energy is up about 50%. I might take two Vicodin a week, instead of two a day, and some weeks not even that. I’m in physical therapy and try to walk on the days my knees don’t hurt–and there are those days. On cold rainy days, I used to curl up on the couch, unable to move. Now those days are just like any other day. I’m winning the battle, for now, anyway.
That’s all I can do. One day, then the next day, then the next.
Because I’ve got a lot more days out there, and without all the suffering, I know I’ll really enjoy them. I finally scored an appointment with a rheumatologist at the Cleveland Clinic for next month, so new options will become available. There may come a time when I have to give in, but I haven’t reached it yet, not with this new lease on life. Supporting those with chronic pain is hard. But knowing someone else’s outstretched hand is available– preferably holding a couple of spoons!–is priceless.
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.
I got a chance to travel to Florida this weekend to a friend’s wedding, a long-time compatriot from my newspaper days. She was the matron of honor at my second wedding (or third, depending on how you count it), and I’m the godmother of her first son. That being said, we haven’t been closely in touch for years, though we do manage to have a face-to-face at least once every couple of years.
Florida is beautiful and sunny in May, though the temperatures were considerably higher than I was used to, after a long winter in the frozen Northlands. The wedding itself took place on the beach in Melbourne. Both the bride and groom wore white–before Memorial Day! *fans self* Most of my lady friends in the South would have fainted dead away. It was short and sweet, and the view was delightful. The ceremony was followed by a small but energetic reception with some of the best food I’ve had in awhile–jerk chicken, reggae shrimp and this lovely cake:
I also fit in a trip to my dear friend Edde’s in Fort Pierce, where we had lovely weather except for the last night, when some serious dark clouds rolled in over the ocean, dragging thunder and lightning with them. But we still had a nice visit. She was feeling a good deal better than she had been in December, when last we visited, so that was something to be grateful for.
Not something you see every day….