When do you surrender?

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.

red flowers

red flowers

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.

autoimmuneAnd 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.

A grown-up night out

One thing we’re not good at–and I’ve said this before–is making sure the Cabana Boy and I have time away from the kids with other adults. It’s something parents of special needs children really need to do as often as they can, to replenish their own sense of identity. As the folks at Hopelights say:

Think of it this way… when travelling by plane the flight attendants tell you one very important thing – if the oxygen mask comes down, put one on yourself first, so that you are then able to put one on your child. Respite is oxygen. We hope you find some room to breathe.

Usually if we can get away, it’s usually just a couple of hours with each other at a movie or dinner,  hurried through, worrying the whole time what the children might be up to. Since the children have been diagnosed, we have cut back our interaction with others in the community, for a variety of reasons. Church became difficult when behavior issues broke out in Sunday school class. It’s hard to ask parent volunteers who are untrained to deal with the Captain. Even his regular special-ed certified school officials gave up this year, you know? Our other interests tend to be solo pursuits, writing, and gaming, so our time with others is limited.

Both of us have worked with the Meadville Community Theatre, both on stage and behind the scenes, but whereas before the diagnoses, both of us could even be in the same show (even though we were never on stage at the same time….weird…) or do lights and sound together, now, it’s usually just some quick exchange. E will program the sound for a show or design the light setup, or I’ll do a review or some sort of PR thing. We miss it, but finding responsible child care for a 15-year-old who can’t mind himself is tricky.

Arrrr....'tis a fine party ye have thar....

All the same, the annual awards get-together came along last night, and we decided to go for the first time in 10 years. We sat with my friend Pam, who’s helped me with book promotions, and saw a lot of friends we hadn’t seen for awhile, including my Steel Magnolias co-star Ann DeWalt, more recently featured here as an anti-war protester, feistily scuffing it up with a bunch of whiners.

The party was dedicated to 30-year MCT veteran Jim Snyder, who with his wife Cindy are moving to Seattle later this year to be near their kids and grandkids.

Many people wore costumes from shows they did with Jim– like the guy in the yellow flower, who was eaten by the monster flower Seymour when Jim did Little Shop of Horrors. Or the dreidel costume he wore in one holiday show. Yes. A giant dreidel. Only theatre people…

The evening progressed with a lot of folk re-connecting, and a lot of theatre talk. The time when Jim did… the time when Megan did… digging old wood out of the Hole…Emmy running all the way around the building after she went off stage to sneak into the audience to catch Patti’s performance in Flamingo Road.

Jim and Cindy arriving

I’d forgotten what a great group of people these are, and how good it felt taking some time away from not only my office and its emotional toll of broken families, but also the broken family we have at home.

The evening definitely sparked my conscience to make a more determined effort as the summer and fall come to pass to join in some activities outside of work and home. The kids are getting older, and even though they’re not as responsible as other kids their ages, they can be left together to watch each other for a few hours.

Sue with her Kit Wagner award

One project we’re very excited about is the possibility of helping the Unitarian Church to set up a social place for gay teens in our community to hang out–somewhere welcoming that they’re hard pressed to find now in this town. I’m sure the experience of acceptance my daughter had when she came out is not what the average young person finds in this somewhat conservative community. I’m really looking forward to seeing how we can make this happen.

And who knows? The kids are old enough to help with productions, although their attention spans are limited. And sporadic. But it could happen.

And I guess it should. Because we can best model how to be whole people if we actually are—instead of only being people who live behind a label. Maybe we don’t have the diagnosis, but “parent of child with X” sometimes carries its own difficult burdens. Better to have a chance, every so often, for this kind of a smile and time to breathe that oxygen, for everyone’s better interest.

(Thanks to Pam Micosky for these fantastic pictures!)

A breath of fresh air

This weekend the Cabana Boy and I took a break. We left the children with my daughter’s day care business and we went out of town. Not far. Just to Pittsburgh. But as far as we were concerned, it was a world away.

Not only did we deserve it; our kids deserved it, too.

Respite is something a lot of parents of children with special needs hesitate to do. We worry about what might happen to our children in the care of someone else. We worry about what our unruly children might do in someone else’s care. We worry about …well, we worry about everything. That’s what we do, pretty much 24-7, and exactly why we need respite in the first place.

In the past month, I’ve been busy coordinating the dispersion of the children to their various therapeutic units, one from7-3 each day, one from 8-4 each day, one from 8-11:30 Monday through Thursday, and then arranging care or activities for the half-dayer the rest of the week. I’ve kept track of who needed what medication and when new needed to be ordered and picking it up so they had it. I’ve run Dr. Doo-Be-Do through a new evaluation so he can have some mobile therapy and TSS before school begins, per the recommendation of his camp folk. This on top of the usual, back-to-school shopping, my work, dad’s work, running a garden to feed a dozen people, and daily life with fibromyalgia. (I’m not even counting the book stuff. That should be icing. Kind of.)

So the Cabana Boy and I were a little whipped.

But by Friday afternoon, our attitudes improved considerably, just knowing the children would be well-taken care of, and we could drive south, debating plot lines in the Elf Queen sequel (which he’s very good at, btw) and feeling the tension melt as the miles passed.

Getting two solid nights’ sleep–priceless.

A little flirty, alone time? Ditto.

Meals at Bahama Breeze and Jimmy Wan‘s that did not involve either Happy Meals or macaroni and cheese? Simply amazing.

Shopping through thrift stores for special bargains without wondering who was getting lost and yanking on the sleeves? A real blessing.

But the best benefit of the weekend is coming home refreshed and able to handle all the threads that bind up our lives anew. I’m sure when we’re stressed and crabby, we’re not all that attractive to the children, either. So we could come home to them with new clothes for school and special treats, and they’re happy and we’re happy. Sounds like a winning proposal, right?

Hopefully you have family or friends nearby who can help you out with a night or weekend away. If not, there are professional organizations who provide respite services. This autism site has a valuable list of questions on how to choose a respite provider and some direction as to where you might go, if you don’t have anyone in mind.

The important thing is that you stand up for your chance to take care of yourself. Because when you suffer, so does your child. And no one wants that.

Montana musings

Although we’d originally intended to hit Missoula Sunday night, after all the fun and frivolity (shame on us!)of yesterday it didn’t happen.  So we limped into Billings about midnight and took up the road again on Monday.

Little Miss oohed and aahed about the Rocky Mountains, as did we all.  Surrounded by one of the most beautiful landscapes in the country, we hauled butt across the state.  DAMN it’s a wide state. Seriously.

We caught up with the relative with whom the Captain is visiting this summer in Kalispell, and sent him off for a summer mountain adventure. He acted like we were dropping him at a sitter’s for 10 minutes and hardly noticed we left the park where we all met. So I hope he has fun, and the break does us all good. Respite is essential to keeping sane folks– as I’ve said before, one of the kindest things people can do is offer to keep the children for some brief time, to allow the parents time to regroup.

Boy, is that neck of the woods beautiful.

Beautiful Flathead Lake--largest fresh water lake in US

Beautiful Flathead Lake--largest fresh water lake in US

We made it into Missoula just before dark and found my ex-sister-in-laws house. With her seven dogs.  Yes. Seven. Housedogs. Wow. But the dachshunds are very well trained, and it’s going well.  The irony is, of course, that I haven’t spoken to my ex in years–but his sister and I get along just fine and have very similar opinions on families, politics, natural living and so on.

The other reason I’m excited to be here is that my latest fiction work is set in Missoula and the mountain north of here, so it gives me the chance to gather relevant details.  I sipped iced chocolate hazelnut coffee in Butterfly Herb Co., the very shop where my heroine is a barista. Very inspirational.

We checked out several locations around town, and I realized I’m going to have to change the place where I put my heroine’s apartment. The  building where we used to live isn’t there any more! So I’m scoping out some local Realtors, asking where someone of her means might be able to rent, likely by the University somewhere.

We also went to a delightful kids’ space called Caras Park, where they have a carousel and a playground that Ditto Boy and Little Miss found wonderful. For 50 cents, they got five minutes of a very speedy spin–Little Miss must have been in heaven. They went five times!

taking a spin

taking a spin

where's that Ben Hur guy...? Driver?

where's that Ben Hur guy...? Driver?

After the whirlwind tour of the city, we ate a late lunch at a fabulous barbecue place and retreated to the SIL’s house for the night.  Early dinner, early bed I think, and then we head south to catch up with my best friend in Cali and then B in the Sierra Nevadas! Job well done so far.

That headache time of year

No, I don’t mean allergy season, though that certainly would apply. I mean summer, and its attendant crisis-level situations about what to do when you have two working parents, special needs children, and services to arrange around family demands.

We’re all busy. Even without the challenges I know a lot of you parents have of getting kids back and forth to sporting practices and events, we have been run pretty ragged by the schedule of services we’ve received in years passed. (Sports are right out. For a number of reasons.)

The first year of our diagnosis we had to deal with TSS and social groups for two of the children, all provided by workers who didn’t drive. So we rushed here and there.

For several years thereafter, we had summer camp 35 miles away for the two kids with autism, and made the trip twice a day.

Ditto Boy was jealous the others had a special camp, of course, so he was signed up at the Y, so he had plenty of activities.

In addition to the weekday events, of course, we had to find time to have time away as a family, and also time to visit grandparents in South Carolina, so we had some respite. For the majority of the year, there is no respite, and with the way the Captain has been carrying on this spring, it’s hard to find anyone willing to take him, even for a short time.  So at 13, when he should theoretically be able to watch the others for an evening so we can go out, he’s the one of the three that needs a babysitter the most.

We found a relative who will keep the Captain for a month, but can’t do any transportation for the visit. So it looks like I’ll be driving to Montana and back (no way I could put that boy on an airplane alone!!) to drop him off, and hopefully a friend will be flying this direction at the end of the month and accompany him.  Two weeks out of my schedule just for 30 days of peace.

Trying to work around grandparents’ schedules is hard too. The schools are on different calendars; they start in early August, while we don’t go till September.  And with their need for continuing ed and so on, we are limited to a very small window–actually exactly the time that I had planned to drive the boy out.   Which would mean not only would the children miss out on a vacation across the US, but there would be no respite. But it at least frees up Little Miss for her ESY program.

So we regroup and regroup and regroup. And reach for the Excedrin.

Tunnel vision

Our life with autism has been steadily heading toward a dark tunnel, and I’m afraid the train is about to arrive.

While Little Miss seemed to be coming along so well up till this year, fourth grade has made it clear that she has real issues I’ve written off to language delays or other “fixable” things. We’ve had to come to grips with the fact that despite the help she gets at school and TSS/BSC services, one of two things is true: either the language help that she needs just isn’t available in this area, or that she really is limited to practical knowledge that will enable her to care for herself, but she’ll never be an academic scholar, no matter how smart she is.

That realization, while heartbreaking, pales next to the other situation. The past few weeks have made it clear that The Captain’s world cannot be moved by anything but his own impulsive desires. He does what he wants to do when he wants to do it, despite the rules and without regard for others. Earlier in the year, these incidents were limited to school hours, and we thought the “experts” could deal with that. I mean, despite our requests not to have an aide assigned so that he could learn to take care of himself, they put one with him. Seventh grade with an aide all day long. Not geared toward making a boy gain a lot of friends. But, again, we thought as long as the incidents remained at school and he continued to follow the rules at home, we could go on.

This week, however, in a remarkable display of just where his head stands, we’ve discovered that he is near sociopathic. He acts without regard for consequences and how his actions will hurt others.  As we peel back the layers of “what if,” we can envision some truly horrifying results, especially with an impaired sibling who’s coming into her own puberty issues.

When his mobile therapist came this week, we had a long talk. She reminded us at length that this is part of the Asperger’s diagnosis, while she reassured us that we’ve been doing all we can to help. She had a long talk with the Captain. Then she quit.

Part of mobile therapy, obviously, is the same drive that is part of helping an alcoholic: the patient has to want help and be willing to admit things aren’t as they should be, and be willing to make changes.  She says after nearly seven months with her, that’s just not happening. Perhaps he can’t process and assimilate the information, or else he can’t apply it. She believes, as we do, that he chooses not to. This after eight years of TSS and mobile therapy, sometimes at 35 hours a week.

So we’re heading into the tunnel, with a very small number of alternatives available. The therapist suggested respite, but there’s no one that will step up for that in either family, not for long enough to make a difference, anyway. Until he actually hurts someone, none of the facilities around here will be interested–we’re not sure we want to wait till that happens. Certainly, we’re open to suggestions. Got any?

Ah, brief respite!

Poet Anne Shaw says, “Fond as we are of our loved ones, there comes at times during their absence an unexplained peace.” This is undeniably true.

One of the few advantages I had as a single mother for many years is that my children’s father lived 1500 miles away. (No, not because he was far away! Though that was a blessing, too.) This meant that the girls could go visit him/his mother every summer for a number of weeks. From the time I tearfully put them on the plane until I welcomed them home, I had an amazing amount of time to recharge my personal batteries, worn down to an extreme after 10 months of single, working parenthood.

So now I’m not a single mother; the Cabana Boy and I are solely responsible for our three, who create a huge need for respite. As I’ve discussed previously, it’s hard to find someone to watch the children because of their issues. Even people we absolutely trust find they have problems. While my father lives in town, he has never been much of a grandparent–it’s just not his style, unless it involves teaching pinochle or bridge. That, he’ll do. He could never watch them for more than 30 minutes while they’re glued to the television. So we get stretched pretty thin.

The Cabana Boy’s mother has taken the children each summer since we married, I think the first summer because she was a little wary that this cougar would steal her grandchildren away along with her son. But since that time, and since the diagnoses, she’s been more reluctant to actually take them. Last year’s proposal was that she could take one for two weeks and then the “other” two for a week. Never mind we kept trying to explain that Little Miss and Ditto Boy made a MUCH better pair to visit than any combination involving Captain Oblivious.

As it turned out, camp hours basically forced us to send them for the same two weeks, all three of them. No major tragedies, unless you count Captain O’s blatant verbal attack on some certainly very nice Southern Baptist people in a hotel elevator as he informed them in no uncertain terms that he was an Atheist because Bill Nye said there was no God and they were wrong. I understand my dear MIL nearly fainted dead away, as she’s a steadfast Sunday school teacher. Oooops.

This year, because of gas prices, we all agreed that they’d go together. So Friday we’re taking them down to South Carolina for another summer visit, two weeks without the children. The Cabana Boy and I are seriously hoping to find some time to destress and reconnect, do all those things we can’t do when the kids are here. Maybe even eat dessert first occasionally. We do want to make the trip to Lilydale and consult a psychic. We will also visit K, and taste some of her fabulous cookery at culinary school.

And then we’ll hope that the rule is not that out of sight means out of mind, but that absence makes the heart grow fonder. Really.