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?
therapy
Not always the most wonderful time of the year
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.
There’s no good way to do it, so this yields the sucking-up and effort to maintain through the holidays “for the kids.”
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.
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
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.
Taking a moment to recognize success
And 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
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. 🙂
Approaching ‘normal’
I realized the other day that this is the first ‘real’ summer the two younger kids have had since they were maybe a year old. (The Captain, of course, has not improved, so he continues in partial hospitalization, and has developed a kleptomaniac streak that’s gotten him in trouble with the law. Fabulous.)
But Little Miss and Dr. Doo-Be-Do have been in autism summer camp, ADHD summer camp, multiple therapies, over and over, at the Barber Center, at the Achievement Center, at the college, even after we finished with the 40 hours a week of ABA and talk therapy. This summer, by contrast, they can sleep in. They can use a pool pass to the city pool whenever they choose, and belong to the summer reading club at the library. They can attend the summer cheapie movies at the theater downtown. They can play their video games and watch Glee Project reruns to their hearts’ content.
They can have a BREAK.
So far we’ve seen no negative consequences. They aren’t slipping back into any of their negative behaviors; instead, they’re warming emotionally, able to interact and share home-y parts of the day with us. Granted in a couple weeks, when we have to start setting the alarm a little earlier and earlier to get used to the school schedule, it might be less exciting. But now we’ve been sewing together, and Little Miss and I made jam from raspberries she picked in the back yard. The Doctor helped his dad drywall our new bath and laundry rooms, and he’s even playing Warcraft one night a week with his dad, too.
Just like “real” kids.
On the Allegheny River across from the new Steelers stadium
Which is so refreshing, after years when we spent a total of 70 hours a week in therapy. Not that they’re “normal”–whatever that is–but they are strong, functional parts of the household team. Little Miss has a streak that makes her use the correct tools for any job and continue it till she’s finished, that is a blessing. The Doctor has a wicked, if sometimes off-base, sense of humor that cracks us up. We like having kids we can trust to do what they’re asked and let them out of our sight for a few minutes, even babysit each other if we need to run to the corner store.
Their brother? Suffice it to say we’re still pursuing other therapies for him, since he can’t be left alone for even five minutes, or trusted to look after himself much less his younger siblings. This one child consumes seventy percent of our attention and worry; we have lost countless hours of sleep trying to figure out how to help him, or at least be able to live with him. Thank heaven for respite care, when we can at least have some time to bond with the other two and remind them how a normal family interacts. Well, a normal family with a passion for science fiction and musicals, all computer geeks and computer creators, who can quote you lines from Monty Python and the Holy Grail or Blazing Saddles or Firefly with equal vigor. (You know, if the Captain would at least begin one of his rampages with “I aim to misbehave”, we might give him a couple points for effort…)
In the meantime, we continue to expand our family circle with a nice visit to Asheville to see K and her little family–thanks for your hospitality, and can’t wait to see you soon!
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. 🙂
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.
The wide, wide world of sports
One of the suggestions we got from the autism whisperers back in the early days was to see if we could get the Captain involved with sports. You know, the theory being that if he was really good at baseball, then the other boys would let some of the other strange behavior slide.
That was, of course, before they saw the Captain play sports. Or…not play sports.
Sadly he and Little Miss have some fine and gross motor issues that make it difficult for them to really play well. She’s better than he is, but still it’s just not a happening thing.
The Captain does have some creative and dramatic skills that have received approval from his classmates when he can tolerate company long enough to complete a group project. Little Miss has gradually become more friendly over the years, and while she won’t have a discussion on fashion or boys any time soon, it’s thrilling to hear her ask one of us, “What did you do for your day today?” and really listen to the answer.
So our humble athletic aspirations are concentrated in Ditto Boy. He has a limitless supply of energy, and when his attention can be focused, he can be quite the court warrior. Though he’s a little short, he works hard at basketball. He played on intramural volleyball last winter. He likes swimming, too.
This summer he will be part of a special ADD curriculum that will be taught by our wraparound agency, which up until now hasn’t had any services that would suit him. They have a sports-based alternative that works on a points/rewards system, where the children in the program will have to keep control of details in whatever game they’re playing, so that when they are called on, they know, for example, who scored the last point, or how long there is left to play, or what the current score is. The director said it’s supposed to have a 66% improvement rate. Now wouldn’t that be something?
In the meantime, we bought a heavy plastic horseshoe set for the yard. The Cabana Boy went over all the details of the game at great length, how not to stand where someone was throwing the horseshoes, how to keep score, how to handle the horseshoes themselves, and so on, including every possible safety measure he could think of.
We replaced the little plastic pegs they used with larger sticks, in hopes they’d be able to hit the horseshoes more often. Explaining how they could run up to the stick, but not past it, Dad demonstrated how to toss the piece to the other pole.
Ditto Boy, very excited indeed, grabbed up the set of horseshoes and went to run for the pole, prepared to toss them. Just before he slid into the pole with his crotch.
Maybe it’s time to think about volleyball again.
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