Cabin Fever- can it be a good thing?

This is the time of year that's usually marked by the planning of vacations, gazing longingly at seed catalogs, counting off the days until spring. This year's cabin fever has been especially intense due to the unending snow storms we've been getting and nearly weekly snow days. I'm here to say that although I'm experiencing the usual cabin fever that takes over my life this time of year, I'm also kind of enjoying it.
That's mostly because Sam's in a really good place right now, and I can't help but think a lot of it has to do with our slower (sometimes even non-existent) pace. Since returning to school after the holidays, Sam's anxiety level seems to have diminished significantly. Reports from school are good, he's been mainstreamed into a 4th grade reading class which he is enthusiastic about and enjoying, for the most part he's cooperative and enjoyable to be around at home.
Since before Christmas I've been in a kind of anti-social funk. I haven't wanted to make the effort to get people together mainly because I sometimes feel like I'm ALWAYS the organizer. Of course if I sit around and wait for others to contact me and make a plan, I may as well resign myself to the fact that I'll probably be sitting for awhile. Honestly, these days that's ok with me. I'm seeing the positive results that not always being on the run is having on my family, and that makes me happy.
I've been following Sam's lead too. At this point he doesn't seem desperate for friends or social interactions. I wait for him to bring it up. We still do game club, just not as often. He's cultivating friendships with Jory from swimming and Kailin, the daughter of a guy Tom works with. Any encounters he's had lately have been quite positive and successful. We're not pushing them- maybe that's why.
I can imagine it must be exhausting to exist in a world where you don't get the rules and don't understand why people act as they do. Probably a lot like living amongst people who don't speak the same language you do. To put yourself out there in that uncomfortable situation must take a lot of effort, and would certainly not be something you'd want to do every day. Maybe cabin fever is providing us with an excuse for keeping close to home, being where we are comfortable and can just "be". Maybe it's like a recharging time, when we can save our energy up to go out and face the world- me to once again organize my social calendar, and Sam to be able to interact socially and have it be a positive experience. I've always known that being overscheduled made me miserable, so maybe now I've taken it one step further, or lower, however you want to picture it.
I am looking forward to spring, but I hope we can experience it and the rest of the year at our snail's pace.

The Post-Holiday Blues

I've never been one to experience a let down after the holidays are over. This goes back to my days of working in the photo industry, when the weeks before Christmas were consumed with hours of toiling over a hot photo processor. The one thing January always meant to me was a break!! Nowadays, the holidays can be somewhat difficult for our family due to the drastic changes in routine, the inevitable fatigue, high expectations, and unfamiliar circumstances we sometimes find ourselves in. January, once again, seems a month of refuge and return to "normalcy". Today as I'm taking the decorations off my Christmas tree, I'm reflecting a little bit on holidays past, and the things that have changed over the years.

For Christmas this year, I surprised Tom with getting our old 8mm tapes transferred to DVDs. Most of them were taken during Sam's early years- everything from his birth to preschool graduation. I wondered how I would react emotionally to viewing those moments before we knew anything was "wrong". Back when I felt like any other new parent- I thought my son was the most brilliant creature who ever lived. There was video of him counting before he was two and reciting ABC's at age 3. I know I used to think he was gifted when he sounded out his first word at age 3 and could read during his second year of preschool. Then came the diagnosticians, the therapists, the therapists and the administrators. Somewhere along the way I allowed them to collectively squash the hopes and dreams I had for my kid. Somewhere along the way I started to buy into the whole "disability" drama, and see him through the clouded haze that they saw him through. The problems became the focus. I no longer saw that beautiful, brilliant, curly haired boy who made this reluctant mother so glad she took the plunge and reproduced.

I'm completely ashamed to admit that. I guess maybe I didn't realize how far I had sunk until I saw those DVDs from so long ago. It makes me so sad to think about the years that have been lost to this fog of someone else's creation, but I have to accept part of the blame for allowing it to happen. Perhaps I didn't have the strength to fight it, maybe I just figured I had so little experience that I needed to be led by the hand to a place I didn't necessarily want to go. It makes me sadder than I've been in a while to reflect on all this.

But it also makes me feel something else. Pissed off! Maybe I allowed others to alter my vision for awhile, but I don't want that to be the case anymore. Sam is still Sam. He is still brilliant. I have yet to see any school work that he has struggled with. Sure, he has some things to overcome. All of us do. Sam's difficulties present problems for people because they are not the usual difficulties children have. He has often baffled even Tom and I, so I can understand the frustration people dealing with him have, and why they "check out" and hang their hat on the limitations his disability presents. It's easier to write a person off and define them by the diagnosis they have. I am feeling so sorry that I allowed myself to fall into that trap. Before October 2005, Sam was defined by his personality, his love of life, his intellect, his sense of humor, and yes, his quirkiness. My goal for 2011 is to get back that optimism, the belief that anything is possible, and to never give up trying to get the best for Sam.

A "Normal" Day

I think for one 24 hour period, I'd like to know what it's like to be the mother of "normal" 4th grader. I normally hate that term, and avoid it's use, but given my frustration level at this moment, it's probably pretty accurate. Now I know that life isn't perfect for anyone. As a friend in college was so often heard saying "We all have our crosses to bear." I know that people out there in the "normal" world also experience their frustrations, but just for one whole day, I'd like to experience a day without the following:

1. That upon summoning the child out of bed, I won't get growled at or yelled at.
2. That I wouldn't have to hear "I don't want to go to school" several times before 6AM.
3. That conversations between Tom and I over coffee would not be interrupted.
4. That there would be no complaints about chunks in the breakfast yogurt.
5. That no prompting to get dressed would be needed.
6. That all materials for the school backpack, coats and shoes would not have to collected by me first.
7. That I would not have to worry all day about how things are going in school.
8. That I would not have to get an email at 2PM from the teacher about Sam's bad day.
9. That I would not have to worry about how to handle the situation in school, knowing I should somehow address it, but having no idea what kind of thing would even make a difference.
10. That I wouldn't feel as if I am re-inventing the parenting wheel each and every day.
11. That I could count on the fact that all coats, shoes, backpacks, etc would be put away when arriving home from school.
12. That I would not have to hear in excrutiating detail every nuance of every Thomas the tank engine story.
13. That an idea I have about an activity to do would not be met with negativity.
14. That I would not have to make an entirely seperate meal from what I'm already cooking.
15. That I would not have to hear endless whining about not being able to go first playing Wii, or not winning at Wii.
16. That major anxiety attacks would not accompany bedtime (yes, the last thing had going for us seems to have fallen by the way side too!)
17. That I would not have to wonder for the millionth time if my son was ever going to be able to live as a productive adult.
18. That Sam has no friends that he has made on his own, and doesn't seem to "get" that his crappy behavior makes a negative impression on others.

Writing it all down doesn't help. This is the holiday fun I am dealing with. I hate to bitch- it makes me feel guilty, cause so many I know have it so much worse. Those dealing with disease, several mental or physical handicaps, drug abuse, alcoholism or a host of other issues. I'm sane (barely), Tom is sane (sometimes too sane) and we are dealing with HIGH functioning autism here. Days like these make me wonder what is just so "high" about it.

In praise of the genuine

Last night I went with my friend Becky (also mom to an Asperger's kid) to hear author Jesse Saperstein talk about his book "Atypical- Life with Asperger's in 20 1/3 Chapters". Both Becky and I had read the book within the last week and enjoyed it- in places it was hard to read, but other passages were laugh-out-loud funny. Jesse speaks much like he writes- with honesty and lots of humor. Besides the obvious inspirational quality hearing him talk about his life, failures and successes brought me, I was deeply impressed by his genuineness. After the talk, Becky and I stood in line to get our books signed, and it was a long wait. Jesse took the time to speak to each person, learn their name, and sign their book with a personalized message. If there's one thing that many of us in the ASD community like to do, it's commiserate and share our experiences with others who are in a similar situation. To be able to converse with someone who has lived 28 years with Asperger's in the neurotypical world (1/2 of that time undiagnosed), who has experienced both the best and worst that life so far has had to offer, and who appears to be on the road to a successful life is a rare opportunity. My impressions of Jesse were mainly that here was a real person, someone who tells it like it is, is often brutally honest, but with whom you would always know where you stood. I wonder when it occurs in a person's life that they have to be on guard for people not being real. I won't say I'm especially suspicious or even wary of people I meet, usually someone has to prove themselves unworthy for me to sense they are being fake, but my question is, why is this the way things are? Jesse mentions in the book that things would be so much easier if neurotypicals would just say what they mean instead of playing games like avoidance or ignoring.
I'm not exactly innocent of practicing what I preach, but I have to admit I find it refreshing to be around people whom others might find blunt, or even tactless. Jesse says he had to learn compromise to have a degree of success in the real world. If the art of compromise means game playing, the use of it is probably questionable. I'm all for sparing people's feelings, but how often have we all had thoughts of things we wish we could express, things that might even be viewed as constructive and useful critcism? If there was a way to meld the two concepts together- tact and honesty, probably most of the world's problems could be solved.
In the meantime, I'm glad the Jesses of the world exist. I hope I am working on guiding Sam down a path where he can be both genuine and successful. Some days are harder than others, and it seems like we'll never get there, but hearing stories like Jesse's give me hope that things can work out.

I'm not going to let myself get dragged down!

This has been my latest affirmation for the last couple of weeks, and it's becoming a mantra as the tsunami threatens to pull me under......

Sam's level of anxiety seems to be steadily climbing. Of course 24/7 he's not completely anxious, but the periods of anxiety are now daily instead of weekly. His sleep pattern has taken a good hit, and after the 5th time of visiting his room in any one evening, the rest of us are getting pretty anxious too. Anyone who knows us remembers that sleep is one thing that we have not had many issues with over the years. We would hear the horror stories of other parents of spectrum kids who tore their hair out getting their kid to sleep in their own bed, getting them to sleep PERIOD, and we considered ourselves lucky. In the last month, we've had to deal with Sam crying, complaining his room is too hot, clock watching and having it stress him out so much that we had to remove the clock from his room, experimenting with different bedding and blankets, staying up later, taking a small dose of melatonin, etc. The bottom line to all this is that he is stressed out over who knows what, doesn't know how to explain it or deal with it, and so the long trip down the mine shaft of darkness continues.

This trip is not unfamiliar to us. We've been here before- pretty cyclicly for the last few years. What is different this time is that I know it's been coming for a while, and so far I'm refusing to give in. My desire in this go-round is to attain some level of understanding into how Sam is experiencing this anxiety, to get him to some form of understanding, and to develop a "tool box" of strategies to use when anxiety come knocking.

In crisis situations like this, Tom tends to look outwardly for blame. What bad things are the kids in school teaching him? Who is picking on him? What are they making him do that he doesn't like? I know better than to think things are that simple. There is no quick band-aid that will make this disappear. What it means is more hard work for all of us. We didn't get an instruction manual with Sam. (not that we'd have read it anyway) I feel like my parenting journey has been one science experiment after another- the very same strategy I accused Sam's kindergarten team of employing 4 years ago. I can't say all the experiments have been failures- in fact I think my instincts are pretty good as far as knowing what interventions might work.

Times like these make my own anxiety so intense that I sometimes get swept up in the storm momentarily, then feel like shit after it's over for giving in and being human. I try not to beat myself up. I'm picking myself up tonight and dusting myself off, determined to re-entrench and not get swept away by the next tidal wave that will inevitably arrive in the near future.

My guilty pleasure

Sometimes, as moms do everywhere, we need an escape. I'm sure most moms spend a considerable portion of their day worrying about their kids- whether they are too doing too little for them, too much for them, feeding them right, yelling too much, etc. We all have those little go-to things that rejuvitnate us when we have a minute to ourselves. Well, for the past 18 months or so, my guilty pleasure has been Christian Historical Novels. Pretty ironic for someone who has not darkened the doorstep of a church other than going to weddings for the past 25 years.
Oh, it started innocently enough. When I was still employed at the library, a set of books with attractive, old-fashioned looking women on the covers called to me from the shelves across from the circulation desk. I had not been a regular fiction reader since I was in my teens, opting instead for biographies and historical monographs, but something about these books made me give them a second look. I borrowed them and started reading. What I found in those pages were good stories with interesting, believeable characters. I could read through a chapter and not have to go back and re-read paragraphs to make sure I didn't miss anything. All these books required of me was the time to immerse myself in the story and enjoy. I noticed about 1/2 way through the first book that the characters seemed to talk about God a lot more than the average person might. I was mildly shocked to find that the books had been published by Bethany House, a publisher specializing in Christian books. I didn't even know such things existed! After this first series, I was hooked. I read just about everything by Tracie Peterson I could get my hands on.

Then I started investigating. Turned out this Christian fiction genre is a pretty big thing. Now the only thing I like better than reading the books is researching which books I'm going to read next! There seems to be a nearly endless supply of authors out there, writing about everything from pioneers in Kansas to debutantes in Newport. There are Christian fiction bloggers, Christian fiction lists on Amazon, and dozens of author websites. While one of the common threads all these books have is the characters' belief in God and faith, most of the books I have read so far (I would guess somewhere in the area of 75) aren't heavily preachy or scripture-laden. Sure, I've run across an author or two who veers into this area. When I find myself reading that kind of book, I just cross that author off my list. Most of the authors appear to be more intent on producing a good story than saving my soul, thankfully.

There's lots to like about this genre. Having always been a really visual person, I appreciate good cover art. The covers of many of these novels (especially the newer ones) appeal to someone like me, who buys a bottle of wine if I like the label. The reading is easy and entertaining- I don't feel like I need to have a dictionary handy and if I nod off in the middle of a paragraph, I can pick up where I left off with ease and not worry that I've missed something critical. I find most of the books I have read are meticulously researched, and refer to real historical events, many that I have limited knowledge of. I like the whole idea of a series where one character is followed from her teenage years into mature adulthood. Right now I'm reading the Copper Brown series by Jan Watson. Copper is 15 when the series begins, and through the books the reader gets to know her as she grows from child into an adult. Some authors aren't afraid to tackle difficult subjects such as rape, and even deaths of major characters. Most have happy endings, but the heroine often has to endure many hardships to get there. There is no swearing or smut, neither of which I've ever been a fan of reading (or watching, for that matter).

I think by far the biggest benefit that these novels afford me is the chance to escape to a world of long-ago where I don't have to do the thinking about the situations in the characters' lives. I'm used to imaging scenarios in the lives of my own ancestors and those of my clients. Lots of the details between the lines of the records I examine depend purely on what I can conjure up based on my knowledge of the times and places these people existed in. When my brain gets tired of trying to imagine what life must have been like for those real-life people, I can escape into a world that someone else has researched and dreamed up. I don't plan to become a regular church goer anytime soon, but I'm a total convert to this genre of books!

Changing seasons

The other day as we were driving home from camp, I pointed out to Sam how some of the leaves on the trees were already changing color. He commented that he loved to watch the change of the season, and that fall and winter were his favorites. From an adult perspective, I have always loved fall for its beautiful colors and cool temperatures, but I don't love what it leads to- cold and snow. The change in the seasons has occasionally been a difficult time for us. A change in season often brings with it a change in scenery- starting school, ending school, major holiday, or vacation. I have to admit I never took much notice of how much changing seasons affected us until I had a child with Asperger's.

Growing up in New York state, seasons changing just goes with the territory. You get so used to winters being cold and snowy, springs being all about mud, summers sometimes hot and humid, other times less so,and falls being cool and very colorful, that you barely notice anymore. When Sam was very young, we went through life pretty much oblivious to the seasons, until he started school, which was the beginning of the end for us. I remember very much resenting being a slave to the school schedule- and it just made it worse to have school be such a negative experience for us for the first few years. I honestly didn't get into the "It's the most wonderful time of the year" attitude until Sam was in second grade at least! Anyway, change has since been tricky for us, so we always approach this time of year with cautious optimism, at least until we have reason to either go into panic mode or realize that everything will be ok.

Sam is beginning fourth grade this year in the same school, same room, with the same teachers as last year. The only thing missing is familiar friends. There is only one returning student from his class last year, a kid who joined the class in the spring and who Sam is not thrilled with. I know he had some anxiety about encountering this student again because he was said to have been "bossy and yelling at me." I try to point out that people can change over the summer, and that this student may be so glad to see someone he knows in the class, he might not be so bossy. That Sam tends to be bossy and overbearing himself is also something I try to (diplomatically) point out. I also remember a lesson from last year- "You don't have to be best friends with everyone, but you do need to try to get along." The very kid he clashed with early in the year last year ended up being a favored friend by the end of the year, and sorely missed during summer school.

So while there are bound to be bumps along the transitional road from summer to fall, I am feeling somewhat hopeful that this year will be a tranquil one. I, and others, have seen tremendous growth from Sam this past year, indicating that this is the right placement and team for him, and that the efforts that Tom and I are putting forth are really showing results. This makes me want to work harder, and hopefully see a second year of growth. This is the first year I sent Sam to school with goals with talked about together over the whole summer- make a bring home type friend, and be the smartest kid in the class. I'm committed to helping him realize each one!