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?
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.
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. 🙂
I’ll start with the view from our campsite at Curry Hammock State Park which was interesting in a number of ways, including how close we were to the beach, although pursuing the wildlife was much more fun. The park is “green”, so the restroom/shower facilities were all specially designed to fit with the local ecosystem.
The wildlife that popped up all around our campsite included some fabulous green iguanas like this guy:
The area, though is known for its blue crabs, which had hideyholes in the ground all over the place, several around the campsite itself. My daughter had the chance for prolonged conversation with some in the mornings, since she is an early riser, but I didn’t get to see so many.
Out time in the Keys sadly came to an end, and we headed north, where M and kids rented a car to head home, while we stayed in Satellite Beach with a friend of mine from the old newspaper days. It was two days full of fun, great food and new adventures.
Linda’s friend Rob was so generous with his time–one afternoon, he took the girls to his neighbors’ dock. Here’s the result–they each caught one!
While we were there, we also had the chance to visit Kennedy Space Center. Yurie was excited to go there because of the rocketships and the history. Little Miss just went for one reason:
She actually did pay attention to several of the other exhibits (though she was still pretty obsessed with the Birds), as she demonstrated in later conversation. We took a bus ride out to see some of the outbuildings (including the one where Rob works!) and then came back to sit through a mock-up of a moon landing, which was cool (especially for those of us old enough to have watched it on live tv) .
It was great reconnecting with Linda. We’ve both gone on to interesting lives, she as a counselor/teacher and me as an attorney/writer. But to take just a moment to relive those escapades as young writers–driving out onto the flight line at the air force base, checking out the drug hangouts in Florida City and nearly getting nabbed by the DEA–was awesome.
Then a sad day as we drove to Miami for Yurie to catch her plane home to Japan. We all survived the logistics of getting her to the airport during rush hour in Miami in a giant RV, AND of getting her multiple suitcases to the baggage carrier successfully (and the fact that the Miami Heat apparently won some sports event and we could have been marooned in city traffic for days, but we didn’t know it at the time). Goodbyes were tough. We’ll miss you, kid. 😦
The next leg of the trip was to Fort Pierce to visit another old friend of mine. We were both a little worse for wear for the years that had passed, and both dealing with chronic pain. But it didn’t stop my friend from being a delightful hostess, and we had a wonderful couple of days. Here she is with her friend going to a Mad Hatter party:
She looked great, and I’m so glad we stopped to see her. She lives in a beautiful condo overlooking the Atlantic Ocean, and invited me to come stay with her on a more permanent basis. Have to admit, I’m keeping that in the back of my mind. There are worse choices.
Little Miss was more delighted with the two miniature dogs living there:
Finally, north to Asheville, to complete our travels, to visit with K and her lovely partner L. We always have a good time with them, and they work so hard at creating a life together with L’s son, even though the state of North Carolina is much less than helpful in its acceptance of gay rights. We took the chance to do nothing a lot of the time, preparing for the long drive home, and took advantage of the KOA’s nice facilities, pool, park, etc. to just let go.
And of course we visited L’s new job–Asheville’s Ultimate Ice Cream shop. With unique flavors like goat cheese and bing cherry, chocolate and ginger, and even caramel with blue cheese (to DIE for…), it was an amazing tastefest. That was before we got the maple and bacon ice cream.
Yes, I said bacon.
It was unbelievable. Please put it on your bucket list. Right now. I’ll wait while you get a pen.
Hard to believe all this fit into 16 days, but it had to come to an end eventually. What didn’t come to an end, of course, was the pile of work waiting for me when I got back. But then that’s what the real world is about. Time to start dreaming of next year’s vacation!
I’m guest posting over at Jean Myles’ blog today on the subject of marriage and autistic children. Jean has two little boys, one with autism, and she now works at home so she can make sure her little guys have all the special support they need!
I know I’ve talked about the subject of marriage stress and divorce before, and many of you commented on the study I cited. But you know, for all the autism parents I know, so many of them are on the edge or have divorced over the issues their children have, that I stand by my position. It’s a hard life. Jean’s focus on early intervention is outstanding–what a difference this makes, as we’ve seen in our own house. My best wishes to her and to her readers.
Take a break from the summer heat to come by and say hello!