Wal-mart is always an adventure, especially when I take the girls. They did well, today, but we saw something today that just kind of struck all three of us as odd, and it was interesting in trying to keep the girls from speaking out.
In the produce section, a little boy of about four was carrying a food item and crying, calling for his mother. No parents were looking frantically, and the boy was growing more upset by the moment. I went and got someone who worked at Wal-mart while another woman stopped to talk to the child. The Wal-mart worker was really sweet with the boy, got down on his level, talked with him, soothed him. Some minutes went by; the girls and I went on with our shopping and were in line checking out when a family of four got in line behind us. You guessed it: the family with the little boy who had been separated from them.
The girls immediately noticed and recognized the child, but I shushed them and kept them focused on the little dolls they were purchasing. The boy was calm now and wandering far and wide from his parents who were canoodled against the cart, the husband's hands in the wife's back pockets, as they ignored their son. There was no sign of distress, no sense that just a few minutes earlier their child had been nowhere near them (they weren't anywhere near the produce section), that he had been distraught and weeping.
They were oblivious. Maybe it's because they were young. Maybe it's because their sexdrive was in hyperdrive. Maybe it was something else. But it struck my girlies as really weird behavior that they weren't paying any attention to the boy, especially after he'd just wandered away and been lost from them minutes before. For me, losing one of my kids, even for a moment, is my worst nightmare. I know they often aren't focused, and I make sure that they hold onto the cart, that they stay near me, that I keep my eyes on them. It still scares the crap out of me to let Bobby at 21 walk to another part of the store without me, but he's got a cellphone and he needs to be able to do these things, so I loosen my grip and let him. Maybe it's the difference in raising special needs children and neurotypical? Or maybe it's the difference in the way those parents view the world and the way it works? I can't help but play out the worst possible scenarios, and I'm a bit highstrung, so I watch more carefully maybe?
I don't know, but I'd bet you anything that incident today left more of an impact on me and my girls than it did on that family of four. And I don't know whether that's a good thing or not.
Community is important; all too often in our lives as special needs parents, we can and are isolated. We are left to our own devices; we are given inadequate guidance, advice, or information regarding our children and their issues. We don't know where to turn and we don't know who to turn to.
Back when our journey began with our son, there was barely an internet; there was hardly any chatter on autism. I've written about those times: the bad books, the bad shrinks, the bad times, all around. It wasn't easy. There were years of fractured days and splintered nights, times I felt like I was barely holding on, and that no one really understood. And there was no help, no break, little hope. It was not good.
So I get it. I do. I have the utmost compassion and empathy for those new parents struggling with this bewildering diagnosis, their child's staggering needs, the confusion, the isolation, the sheer exhaustion. I get the fear. I get the despair. I can close my eyes and be 22 again, with an infant son who screamed unless he was nursing, to be 25 again and have a preschooler who was nonverbal, still in diapers, and preferably naked. I can close my eyes and be 30 and holding my nine year old son in his hospital bed, after his stroke, his right side paralyzed, his speech gone. I remember those months after the stroke when he had to learn it all over again, when we were once again cleaning his bowel movements off the floor and wherever else he cared to go. I get it.
I get it. I do. It can be incredibly draining to parent children with autism and other neurological disorders. We're ill-equipped to think of ourselves as caregivers past a certain point in our children's lives, and we are often left with no community support, with no respite care, with no one but ourselves to work with our children. And when we have multiple children, the demands increase, especially when each child has an neurological condition. It's daunting, overwhelming, and it can feel like there will never be a light at the end of the tunnel.
And we need to vent. We need a safe place to let it out, our pain, our fear, our frustration, our exhaustion. We need desperately to know we are not alone.
I really do get it. And I get when you are at the bottom of the pit, it's impossible to think there's any other place but the pit. You think it will never get better. You can't remember a time different, and it's impossible for you to imagine how it will ever improve.
And as long as you are in that pit, isolated, alone, and certain in your convictions that it won't get better, it won't.
You may not have put yourself in that pit, but you're there now. And the only person who's going to get you out is you. YOU. Friends can be lined up along the pit, holding their hands down to you, throwing you lifeline after lifeline, but if you don't reach up and grab, you will stay in the pit.
We each of us draw lines, boundaries, that we believe we will not cross until we've crossed them. We may not realize until it's way too late that we've smashed these lines we've drawn, obliterated them out of existence.
We can and should be there for each other, support each other, and we should be able to express when we are in despair, when we are broken, when we need some help.
We must learn to ask for help when we need it, and we need, even as we are mired in that pit, that wasteland that we think goes on forever, to realize that our actions in that pit will follow us out and into the world and into our children's lives.
Our pain does not give us license to hurt or abuse our children. It does not give us license to degrade them or dehumanize them. These are not lines we can cross.
Our children depend on us, need us, demand the better angels of our nature. We are not perfect and we will fail them, but we can not for their sakes or our own afford to fail them when it comes to respecting their innate value and dignity.
I don't know what the answer is, how to respond, what to say, when I've seen that line obliterated. It gives me tremendous pause. But let me suggest this: if all you see is pain and the pit when you see your child, you've walked up to that line and started stepping across it. It's time you reached out and got some help.
I've been taking it easy. Well, for me, anyways. I've done the syllabi and course outlines for all of my classes, although I will have some filling in to do on the American Lit class and of course, lectures to prep. I've updated the webpages for the classes, prepped the blackboard pages. I've had geek camp with the kids, too, although we took a break from it yesterday and are again today, since Lil's got her friend over, and the three girls are having a blast.
Heck, I've even read fluffy fiction! I finished this one the other day:
I even reread Emergence: Labeled Autistic yesterday.
And I started another Sookie novel yesterday, which I'm enjoying:
Since Rick had a four day weekend, we switched up the documentary watching to movies and playing video games. Rick's back at work, though, so as soon as the four of us were ready, we sat down to Netflix and National Geographic's Sky Monsters.
At 90 minutes, it's another long one, but the three kids enjoyed it and attended better to it than the Walking with Dinosaurs from last week.
Rosie even gotten in the drawing mode:
Afterwards, Rosie gave Lily a lesson on how to use nail clippers. Rosie's fine motor skills are better than Lil's.
"You do it how?"
"I don't get this!"
I took over and showed Lil several times and had her practice, but she's going to have to work on the grasp and pressing enough to cut. One of Rosie's stims is to bite or peel her fingernails down, and she learned several months ago on her own how to use the clippers so that she had no jagged edges. Lily's nails, on the other hand, are rarely in Lily's focus, so it means Rick or me noticing and attending to them.
After the documentary and nail-cutting adventure, I confess my oomph is up and gone. Bobby's been sick since Christmas day and he doesn't handle colds well, so dealing with him when we're both ill makes for some testiness. The cold I got at the beginning of December has drug on all month continues to stick to me like sticky mucus, along with last week's issues. I'm pretty sure the prednisone is not helping me on the feeling well part, although the back pain and UTI are improving, so I'm glad to have both the prednisone and the antibiotic. This afternoon, I see my primary care doctor, so we'll see what happens with that appointment. Every day that it's been possible to nap this entire month, I have, and that is so unlike me. If I could, that's where I'd be right now, napping under my electric blanket.
I expect if there's any way I can find my way to bed when I get home, I will. Having learned to doze on the firing line at Basic Training 23 years ago, I can still pass out in the midst of the racket of the girlies playing the Wii around me as I lie on the couch.
Be well, wherever you are, and if you can't be well, find a way to get a giggle out of it. :-)
Twitter, facebook, various blog directories, Yahoo and Google news alerts are all familiar ways to most readers to get caught up with the world, and specifically for us, the autism-related world. This morning I read Susan Senators' serious post about the way the world views her two oldest sons and Autism and Oughtism's piece on when it's okay to laugh and when it's not. These are heavy pieces and speak to our human frailties, tendencies to inaction or covert action. They both speak to the pain we can feel as parents and to our darker moments. They're not light reading, but they're thought-provoking and worth the effort. It was not a bad way to start the morning, just a serious way to start it.
What came next in my things to read this morning came through Wrong Planet's twitter feed: "Asperger vs NT war.: Who would win?Why? Assume that the Neurotypicals and ASD in the war are both equal in terms...http://bit.ly/gjOzT9." There are a few answers to the thread, most saying NTs would, and one saying whoever had the most money. And all I could think is what the heck kind of question is that to ask the morning after Christmas, any day for that matter?
What is with this way of framing the world two dimensionally that we all do it? The haves and the have-nots, the in-group and the out-group, the disabled and the non-disabled. It's not that cut and dried. It's not that black and white. And as long as we focus on false dichotomies, it's going to be incredibly difficult to build a truly supportive, inclusive community.
The personality traits (when we remove aspects of crippling disability that are involved on the severe end of autism) that are involved in autism are spread throughout all of humanity; there is no clear dividing line between a fictional neurotypicality and Asperger's, and neither state of being is superior or more worthy. I look at my children and see my husband, my parents, my brothers, and myself reflected back from them. I see shared personality traits and quirks and issues that make us the complex, interesting people that we are. I see the adversities that my children work to overcome, some of which I've had to overcome as well. The idea, the very notion, of positing a war with Asperger's and NTs is absurdity.
I get that my kids are literal thinkers; so many who are not on the spectrum are literal thinkers as well. That isn't something the ASD has the corner on. I get that many on the spectrum have difficulty with theory of mind. So do a whole lot of folks who are not on the spectrum; drive through a school parking lot and you'll see lots of evidence that most folks aren't using their theory of mind. There is a tremendous overlap of traits, attitudes, and behaviors between all people, so that we have more in common that not. We must focus on these areas of commonality in order to build community. We must see the humanity in others and recognize that it is the same humanity within ourselves.
We must be willing to join our friends in their darker, sadder ponderings, as I did with Susan and Autism & Oughtisms this morning, so that we can be a support, so that we can bear witness, even when we're not quite certain what to say in response, so that we are none of us alone on this journey.
But I think we have to reject the kind of rhetoric displayed, even if in jest, on Wrong Planet this morning. I think it's easy, terribly easy to set ourselves up as one side in a battle against an implacable enemy, and I have no doubt that many in this community do indeed set themselves up in this way: bitter enemies on a battlefield, each certain of their mental superiority and the righteousness of their cause.
I read them hammer down the other, time after time, day after day. There's no exchange of ideas, no transmission of information, just an incessant, pointless hammering, with people thinking it perfectly acceptable to call pediatricians "Propaganda Prostitute for the Vaccine makers" and another to cast me as her "old foe, KWombles, hi Kim, speaking out in deception on the side of toxic vaccines...Good thing people aren’t duped by you here working to do so as most are awake now a days & those in the dark or on the fence are soon to meet reason & logic once they start paying attention." The one thing I can say absolutely is that I've never considered this particular individual a foe.
Reading blogs and forums in our community can be landmines waiting to be set off, setting us up to take a tailspin if something connects too painfully, or if we read something so utterly off the deep end that we wonder at both the moral compass and sanity of some of the people we come across. And I wonder, when I read those so far entrenched, what must the weight of their burdens be to be so utterly lost and devoid of hope, of light, of reason? I do not consider them my enemy, my foe, or an outsider; I am not naive enough to think we can change those people, reason them out of positions they didn't reason themselves into in the first place, but keeping a check on them is a good thing to do. There is an underbelly to this community and at any moment, it can reach out and try to tear us down into it.
But it is an underbelly, not the whole beast, not the entire story, and there is so much love, so much light, and so much beauty in the midst of pain and heartache that the journey of being part of this community is well worth the price of admission. Heather writes about embracing Christmas, this first one without her daughter, and I am overwhelmed by her grace. Eric writes about his son and celebrating Christmas and the issues they face with his son's seizures, and I am honored to watch this father battle for his son's life and well-being. Born 2b Me wishes his readers a merry Christmas, as do many of the bloggers on the directory, and there is joy and peace and love on most blogs this holiday weekend. Corina offers a lovely drawing at her blog, and Clay shares some coca-cola videos at his blog. Matt has a cartoon on Rudolph that will make you smile.
And so this morning, I end my reading on an upnote, amazed at the grace, the fortitude, the joy, and the compassion that is out there in our community, just waiting to be found and shared. I have seen into the dusty corners where our fears lay, I've seen into the closet where the monsters lie in wait, and I have pulled the shades to the sides of the windows and let the sun in. All these things are a part of our world, our community. And we must face them all, ideally together, so that we are none of us alone and without hope.
I know awesome is my favorite word right now. I'll work on it. :) My son goes through phases where he has something he'll use repeatedly: "not to mention" and "true" "being two examples readily brought to mind. Also, he says he's "not built for speed" and he's "studied your moveries." Ah, my sweet boy! He says his catch phrases repeatedly throughout the day, whether they fit or not, so maybe he comes by it naturally. He still pops out with them on a regular basis but they're not being used with the frequency that I'm using awesome lately! :-)
Honestly, though, I'm in this kind of mental fog right now, from the meds I'm on. I'm not in the horrendous pain I was yesterday morning, thankfully. It leaks through, some, the pain, but the steroid shot yesterday has helped and I started the prednisone pack today. But I can't really focus my attention, which kind of freaks me out some, as I'm usually hyperfocused and on a mission. I've got things to do, but no ooomph to do any of it. And that's after my second giant cup of coffee. I can roll with it and be grateful for the pause or push against it and try to accomplish stuff. Since I had been pushing against the back over the last week, though, and ended up not even being able to put my own pants on, I think I will sit here in my recliner and embrace fogginess and scifi movies. I don't think I'm up for anything else, honestly.
No geek camp of the documentary kind today, as Rick is home. We're planning on recreational geekfesting: watching the 5th and 6th Harry Potter films and The Lord of the Rings trilogy somewhere over the next four days. With the way the girls watch movies (unless it's a mesmerizing cartoon), the kids will get plenty of movement and it won't be a passive activity, there will be lots of chattering. One of the reasons I love to watch with the kids as television watching as long as it's not sponge bob is that it's dynamic and filled with the opportunity to discuss things. It's an excellent social skills training tool.
Last night's recreational geekfesting with Lucy in my lap:
and Animaniacs on the tv:
I hope everyone is done with their shopping, ready for Christmas, and minimizing their stress. :-)
Perhaps some things cannot be sustained indefinitely. Either that, or the Rosie is way more into science-based documentaries than mysticism and spirituality. Today we voted and decided to watch a nearly two hour video on Buddha:
This is a really well done documentary. The graphics are fabulous; the content is tremendous. However, it's long and really taxed the girlies' attention spans. Rosie was all over the place, and we had to break in several places so that they could jump and holler and get it out of their systems.
Plus, there was a whole lot of shhhs going on. The bright boy and I are big into the study of comparative religions and it frustrated him big time that the girlies weren't giving this the serious attention it deserved. He shushed the girlies and I shushed him, and I have a feeling that if you could have observed the last three hours, you'd think it a farce. :-)
Not so much into Buddha.
But they are.
As the documentary was finishing this morning, I had a coughing fit, and my lower back wrenched. I'd already been nursing lower back pain, coupled with a decreasing range of motion. The coughing spell and running to the bathroom to throw up from all the junk coming up (I know, sorry) really frakked the back the rest of the way up and pain radiated down my legs. I had to have Lily help me get dressed because I couldn't bend over and I couldn't lift my legs enough. With tears streaming down my face, I called Rick and told him I needed him to come get me and take me in to the walk in clinic since my doctor couldn't see me and I wasn't sure I could drive.
After three plus hours in the waiting room, we were ushered back into a room, where I got a shot of toradol. I also provided a urine sample. In addition to whatever is going on with my back, I have a UTI. I got a shot of steroids in my hip, and I left with prescriptions for steroids, antibiotics, muscle relaxers, pain killers (good ones), and diflucan to deal with the yeast infection. Oh, and a rescue inhaler for asthma since mine is more than a year old. I forgot about that.
My dad graciously watched the girlies while Rick was with me. It's not what I intended for our afternoon. It's so not.
Oh, and on a serious downer, I realized just how badly my weight's gotten out of control (oh, I knew, I just didn't know the number), so I've got another thing I've really got to get under control. I recognize that the weight gain is all part of the very real stress I operate under, and I know that my coping mechanisms of chocolate imbibing work against me. I hope that some of the good of this afternoon will be in redoubling my effort to take better care of myself.
Now, if you'll excuse me, I intend to take some pain meds and space out while I watch the kids play the Wii. Table tennis? Really?
I am blessed, truly blessed. I have a family whom I adore and who constantly challenge me to be a better person than I am. I have wonderful friends, both online and off. And I have a job I love and the chance to make the world a better place.
I'm joining in a blog hop (thanks to seeing it at Jen's); the topic is love, and you have to use a photo you've taken. Ah, you know I love to take pictures. Hee, I should take a photo of my camera!
Instead, I choose this one of the thousands I've taken, about someone I love, in honor of our 22nd anniversary on Friday:
I'm not mushy, but for all that this man can drive me crazy, I still melt when he smiles at me. :-)
I'm taking a break from negativity and as much controversy as possible and enjoying the time off with my children. I'm still reading as many of our bloggers as I can, commenting where I can, but I'm just not going to visit angry, bitter places this holiday season.
So you get day two of geek camp and windows into what daily life is like here. If you really want to know what it's like, my chapter story I wrote for the girls last Christmas is a good snapshot. But this is a heck of a lot shorter and it's current. :-)
Last night, we watched the very first Eureka episode as a family. While I've watched them all, Rick and the kids hadn't watched any until this season, so we're going back and watching from the beginning. It holds up really well to a second viewing, thankfully. The girls adore the show, perhaps even better than Warehouse 13. And I really like sharing the time with the kids and steeping them in my scifi geekiness and pointing out to Rick that I told him he'd like the show.
This morning resumed geek camp day 2. Oddly enough, the girlies and the boy took longer to make it out to the living room this morning! Gosh, I wonder why. :) The girlies got set up and ready for the morning shows.
First up was The Universe, episode one on the sun. Is Neil deGrasse Tyson in everything? Lily hopes so!
After playing with the magnetic dolls and soaking in information about yellow dwarfs and fusion and other assorted bits, we moved to the main show of the day: The Pluto Files. Lily was devastated when Pluto was demoted and she loves this documentary. She also thinks Neil deGrasse Tyson is pretty awesome. And two shows in a row? Awesomeness! Explaining that Colbert and Jon Stewart are being funny in their appearances on the Pluto show never gets old. It also doesn't quite sink in.
If you think the girlies are all over the place as we watch these documentaries, you'd be right.
Watching from the couch.
Lil and I agree: awesomeness!
Two documentaries watched and wiggled through, the girlies and I headed to town to visit a friend and to shop. Having braved the mall and Wal-mart and survived, we arrived back home with sanity intact, and the boy unloaded the groceries for me (have I mentioned he's a good son?). Once home, the girlies made thank you notes for me to post on our friend's facebook wall.
The girlies declared geek camp over for the day and decided I should watch them bathe the baby dolls (a very new endeavor). This is brand new activity for both of them, and I've been sitting here watching them bathe the baby dolls, feed them, decide which one is autistic, and had an exchange over whether Sponge Bob has Asperger's, which led to a discussion of differences between autism and Asperger's. The play moved from bathing to something different: they gave one of the babies CPR and declared for some reason that the monkey was dead. I brought the monkey back to life and told them no dead things in our play. It's certainly shaping up to be an interesting afternoon!
Setting up for bathtime.
The baby and the monkey waiting.
Arguing over whether the baby should bathe alone.
Shampooing. Lil had a conniption when Rosie used
a bottle that said lotion, which led to a discussion
with me about being over-literal.
The bright boy ignores us all and makes a virtual deck
(I didn't ask what it was a deck of).
For some reason, the girls decided that it would be fun if Rosie repeated absolutely everything Lily says, which has been going on for an hour now. As they continued their play, I understood where the whole dead thing is coming from. One of the dolls at the store was a Baby Alive doll. Ahhhhhhh. These aren't baby alive dolls, ergo...
My living room is a disaster, too, with magnetic dolls from this morning strewn about, the baby dolls stuff everywhere, but we're having a great day. Imaginative play in a somewhat traditional way, imagine that? It didn't last long, though, as they moved over at the skeleton with the baby doll, trying to birth it. Are those my girls, or what?
We started out on the couch, pumped about the dinos!
We watched this first, just the first episode, as we'll cover dinos over the next two weeks!
The graphics are cool...
But someone had a problem with some of the content.
We moved onto the book after the first episode and read some:
Then we took a brief detour to friendlier dino books while Bobby read in the bigger book by himself.
Next up were websites like Enchanted Learning to look at more dinosaurs in an easier format, where we looked at the introductory page and quickly focused on the Eoraptor.
After a short break where the girls played Jump Start Second Grade on the computer, and the boy and I took care of chores, we moved onto the human body. The girlies got ready to take notes (but they were really drawing sponge bob while they watched the next documentary, which is 96 minutes long, a bit of a stretch for little girlies who have a hard time sitting still).
The Human Body:
It was a bit long for the bright boy, too. Breaks are good things. :-)
About thirty minutes into this, we also discovered it was a bit too graphic in places, as it shows actual surgeries. The girlies were ducking for cover, and the boy was making some interesting faces.
Lil's place to hide from the graphics while still listening to the content.
Bobby was less than thrilled with the surgery to reconnect nerves.
The body video was too long and too graphic, so we took several breaks.
The girls played the same game on different computers.
After lunch, we went back to the video, and Rosie was enchanted:
Rosie adores the skeleton!
And who wouldn't think this is super cool?
There were more surgeries: a shoulder surgery and the removal of a brain tumor; these are not for the easily grossed out, but I found them wickedly cool, and the girlies simply looked away (or hid) while these bits were played. The bright boy alternated between groans and wows. The length of this documentary taxed their attention, but we took several breaks throughout the 96 minute documentary, and they were pleased to have learned some things.
After five hours of focusing on dinosaurs and the human body, we decided we could conclude the main part of geek camp for the day. Oh, we'll be watching Eureka season 1 this evening as a family, so the geekfest is by no means over, but it was a good morning. Tomorrow we're doing planets instead of the body and continuing with the dinosaur study. :-)