Barnmaven

Spilt milk

The laptop I bought on closeout for the kids resides on my breakfast bar. 

When its not being used to play Minecraft or  watching Justin Bieber and (shudder) Ke$ha music videos,  it becomes a resting place for one cute gray polydactyl kitten. Did you meet Hemingway yet?  No?  Here.  Readers, meet Hemingway. 

Hemingway showed up in our garage about two months ago during a several week cold snap when the outside temperatures were hitting single digits.  I opened the garage door to grab something out of the box freezer early one morning and a small furry gray shape went darting away from me and under the car.  It was small enough to be either a very small cat or a very large rat, and it was dark enough for me not to be able to discern which. (Yes.  I screamed.  No.  I am not ashamed.) 

I woke up SG who came out to help locate and identify our newest houseguest.  It took a little while but eventually we heard a very very tiny "meow" from behind the luggage.  Hard as we tried we could not catch him and couldn't get him to come to us, so we started leaving the garage door slightly open and putting out food and water for him.  We worried about his survival because he was so small, but every day the food we put out was being eaten, so we knew he was alive.  I finally got someone to loan me a live trap and we put the food dish inside it.

Three nights later we managed to catch Coco, who was extremely unhappy with us over it.  I reloaded the trap and forgot about it for a couple of days until SG went to get something out of the garage one morning and came back in the house with the trap full of a frantically meowing kitten. 

Now I've dealt with feral cats before and they are notoriously opposed to being handled, so I fully expected to open that trap and have a spitting, hissing, clawing, ANGRY kitten come barrelling out of it.  Instead, a little gray and white furball ran right into my arms, purring and rubbing against me as if he'd been waiting for me his whole life.  I suspect he was very cold and very lonely and happy to have someone warm to cuddle with.  He crawled up my shirt and it was then we saw his six-toed front paws and both SG and I knew he would stay with us.  The name choice was obvious -- Ernest Hemingway is one of history's more famous Polydactyl cat fanciers, having been given one by a ship's captain.  Polydactylism is a dominant trait, so that first cat became the founder of a large polydactyl cat colony.  Hemingway's estate in Key West is currently home to around fifty descendents of that first cat.  Polydactyls are thus commonly referred to as "Hemingway Cats."

(Hemi is the second polydactyl kitty to enter my life, and rather coincidentally, the first extra-toed kitty I had was also a gray and white boy I named "Crash Davis" after Kevin Costner's character in Bull Durham.)

Hemingway's origins are somewhat of a mystery to us.  We are not aware of any feral cat litters in the neighborhood and none of the neighbors reported a missing kitten.  He couldn't have been more than seven or eight weeks old based on his size, and his friendly nature isn't indicative of a feral litter.  Regardless, he's part of the family now.

Yesterday I had to stay home from work to get an emergency crown on one of my back molars.  Turns out 20-year old fillings have a habit of undermining the structure of your teeth, as I unhappily discovered at dinner on Saturday. 

Hemingway was snoozing on the lid of the laptop on the counter as he is wont to do nearly every day when the kids aren't using it.  If they leave the lid open he will walk and nap on the keyboard, which has mixed results -- either the laptop freezes up, which sends the kids into a frenzy when they try to use it later, or it sends out undecipherable emails to equally undecipherable addresses and opens odd websites. 

I managed to snag an appointment to get my tooth fixed, but when I went to leave the house I could not find my keys.  I spent a good ten minutes tearing the house apart looking for them.  As I was frantically searching the kitchen counters. I lifted up a sheaf of papers on the breakfast bar, startling Hemingway out of a sound sleep. He levitated straight up, then landed with scrabbling feet on the counter, knocking over a glass of milk that Race Car Man had left unfinished.  Now I not only couldn't find my keys, but a pool of milk was widening under the mouse, the laptop, my envelope with all of our tax paperwork and my Blackberry.  Heavens to Betsy! 

I clutched my Blackberry to my heaving chest, scooped up the laptop, gave it a cursory wipe, then threw a wad of paper towels down on the rest of the puddle and continued on my search for car keys.  I finally did find them on the workbench in the garage right next to the driver's side door of the car; I must have left them there when I got home from dropping the kids off at their bus stop.  I have no idea why I would have done that, except that I have been completely discombobulated ever since my tooth fell apart.  I was already late for the dentist.  After four hours in the chair getting my new crown installed, I completely forgot about the milk mess.

Last night when Race Car Man went to play on the laptop he gave me a round tonguelashing over the sticky mouse and milk-speckled lid which I had failed to finish cleaning.  Sensory issues and sticky things are an endlessly bad matchup and typically grounds for screaming exceeding the sound barrier, so I count myself lucky he was only Complaining Loudly. 

I wanted to tell him, "There's no use complaining over spilled milk," but I don't think he would have appreciated it.  At least the laptop still worked.

Not doing what I can't

I think I'm starting to get better at this grownup thing.  Perhaps, just maybe.

Race Car Man started a few weeks ago with a new therapist, this time one at a place whose clientele are people with autism (as opposed to a therapist who deals with autism among other things, which for us did not work so well).  I think its helping.  He's had more good days at school, he's starting to get homework again.  My ex had a schedule change at work that allows him to go to our son's classroom two days a week for a couple of hours which is fantastico.  If I could only find a way to make life outside of Minecraft even remotely palatable for this child all would be straight up and down.  You can't have it all. 

Amazon Girl also started with a therapist last week, as the doors of pubescent hormonal hell have apparently opened wide and beckoned her therein.  She's struggling emotionally and needs some support from an adult she can talk to about life, about her parents, about her brother -  which means a third party is required.  Fortunately the last therapist she saw, the one I really really liked, is still practicing and takes our insurance. 

Then on Wednesday nights I still have obedience school with TBone.  And Sundays there's church and then Amazon Girl has her riding lesson, and most Saturdays from here until the sun goes away in the late fall again, I have something to scheduled to do with my horses.  SG has guitar lessons every Tuesday and just got started with some group political thingamajig.  And so on.

Sometimes in between all of that we sit down for a few minutes and breathe and maybe fold a load of laundry.

Last week Race Car Man's therapist asked if we wanted to start him in her next social skills class.  "Sure, when does it start?" 

Next Tuesday. (Two days ago)

Its a class he needs, BUT - it starts at 3:45, just 5 minutes after he gets out of school, AND its a half hour ride away from his school.  And I work full time.  And my husband works full time.  And if I had some time to sit down and sketch out a plan it we can do it but Next Tuesday just does not work for me right now and I for ONCE in my goddamned adult life opened my mouth and said the magic words:

"I'm sorry but that doesn't work for our schedule right now."

I didn't even feel guilty about saying it.  I felt relieved.  I am doing all that I can do for my family and myself right now and I am not going to try and cram one more thing down our collective throats, not at this moment. 

There have been a lot of times in the last several years where I've felt almost all of my waking time was consumed with trying to frantically get everything done that I am supposed to do and failing miserably at it.  Its a horrible pattern - try to do more than you're capable of, fail, drop two or three of the balls you're juggling and then spend a month trying to dig out of the hole you've just created for yourself.  

Perfectionism just isn't going to happen for me right now.

There will be a point where our schedule will open enough to make the social skills class do-able for us.  It will happen.  Just not two days ago.  

Slow down. The tempo isn't as fast as you think it is.

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It was bad but its getting better

Since my optimistic post about med changes for Race Car Man a lot of things have happened.  Things I couldn't write about while they were happening not because they needed to be private but because I was too mental to be able to talk about them.  All is better now, but I needed a few days of perspective in order to move beyond being completely inchoate and albe to construct full sentences.

Race Car Man had to be escorted home on the bus for a seoncd time,  had to be picked up before the end of the day twice, got suspended for a day and had to have his meds tweaked.  We had one emergency IEP meeting and one bitch-autism-mom discussion with the school district's transportation office. (Parents, know your rights and what's in your IEP.  Bus drivers are NOT allowed to independently suspend services specified in the plan.)

Probably the worst day was the day the kids missed the bus because it was early, the bus driver told SG when he dropped them off at school that she wouldn't transport my kid, then the school called me to tell me he had to go home and couldn't come back without a full IEP team meeting and behavioral plan, and when I called SG to go get him kind of lost my temper when I found out somebody (not mentioning any names but it wasn't me) forgot to give him his meds and then we kind of had some ugly words and by the time I got off the phone with him I was on the phone to my EAP for a behavior therapist referral AND a marriage therapist referral.  The following day of the new dosages, my ex gave all but one medication in the morning and asked me when I was dropping off the meds at school to give it to him then.  Except a change in routine was too much for Race Car Man with everything else that was going on, and I had words with his teacher when she insisted I continue standing there and trying to get him to take the medicine even though I'd been trying for a half an hour and I could tell that we weren't going to be successful and he was starting to get really upset which was not the best way to start his day.  Not to mention I was already two hours late for work.

Not a good week.  No. 

By Friday, though, he managed to make it through a full day successfully and ride the bus home and get all his rewards.  That was followed by a decent weekend for all of us.  SG and I made up, the kids mostly didn't kill one another and we even made it to church AND over to my parents for an afternoon to make Gingerbread houses. 

This week he has done pretty well -- not spectacular, but pretty well.  Work was insanely busy with our annual inventory and so many meetings that I haven't had time to be worried about waiting for the other shoe to drop.  I guaran-damn-tee you that by next Tuesday I'll be all settled in, convinced that this time we've hit the right combination for sure and Mr. Race Car Man will never have another bad day at school ever.  Except of course at some point, he will and once again I will tumble down the slope into a pit of abject despair.

I am astounded by how often I am caught flat-footed when life throws a monkey wrench into the engine that I feel I have finally gotten to run smoothly.  Its a constant thing, why does it always seem to upend me so?  I should be used to it by now. 

Tonight is the company Christmas party, and SG and I are going to go eat some good food, drink some great wine, dance our asses off and enjoy adult conversation with our friends.    I will gratefully put the past two weeks behind me for a few hours and I can predict with modest assurance that tomorrow's breakfast will require at least two mimosas before my head feels right again.

 

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This dance

I was going to post about our awesome new dog Little Sister, the one I sweet-talked my husband into letting me adopt while he was on the road.  She's a Mastiff/Dogue de Bordeaux mix, so fairly big.  Instead, though, I am writing about a meeting I had this morning with  my son's teacher and principal. 

While we've had a lot of very good days since the medication change, the teacher has also seen an amplification of sensory behavior.  The day they used clay in art, he spent the rest of the afternoon obsessively washing his hands because he could still feel the clay.  His shirts bother him, his socks bother him.  Even though his focus improved, his anxiety worsened.  And then yesterday, oh yesterday.  Yesterday prompted today's meet and greet.

My son has three loves:  Video games, computer time and Kindle time.  Everything else in life is something that interferes with that time.  He hasn't yet been able to understand that notgoing to school isn't going to magically increase the amount of time he gets to engage in his digital universe.  He resists doing schoolwork of any kind either at school or at home.  Once he is finally convinced to do the work, he finishes it in mere seconds.  If he brings home a book to read that he has already read once at school he simply recites it to you without even opening it.  (They really need to challenge him more)  He loses more play time by resisting than he gains, but he's not yet gained the ability to recognize the cost of this tradeoff. 

Yesterday afternoon he had earned all but the last two letters he needed in order to get his evening dose of post-homework electronic joy.  However, he was asked to complete some tasks that he refused at school.  Sensing he would not earn enough letters to be able to play Skylanders Cloud Patrol on my Kindle Fire, he attempted to rip pages out of his binder, which is his daily communication between home and school.  Then he tried hiding it so his teacher wouldn't be able to find it.  When it was time to go home, he cooperated to go in line, but once on his bus he refused to sit down.  His teacher ended up having to ride the bus with him in order to keep him in his seat. (I'm not sure why the aide on the bus wasn't willing or able to do this, but I'm grateful that his teacher cared enough to keep him safe.)

Needless to say, we all sat down this morning to review what the school is doing and how we can best support Race Car Man. 

We're adding a couple of options to his daily sheet of letters earned.  This way if he ends the day without having gotten all of them, he will have a chance when he gets home to earn one or two more at most.  Doing his homework without fighting is one option, eating his dinner and putting his dirty dishes away is another.  This way he still has the opportunity to turn his behavior around, and doesn't send him home without any hope of playing his beloved games.  Even though he can eventually calm down enough to just play with his toys, it takes a while to get him past the attitude that life no longer has meaning.

We'll also talk to his doc about med changes next week, and we're going to work together to come up with a reasonable reward system for cooperation in completing tasks at school and homework at home. 

I write all this with optimism, assuming that we will see a change for the positive in his behavior. 

It is such an intricate dance, trying to anticipate the way I ought to move to meet his needs.  One miscalculation and I've mashed his poor feet without meaning to.   There is no formula for the perfect mix of what keeps Race Car Man's engine humming.  We just have to measure things and try them and change them again if they don't work.  The pattern of this dance just keeps evolving and changing, and I must do so as well so that we don't lose step with one another.

The Queen of Managing Everything

As crazy as my life can be structurally, in terms of schedule, it is highly organized.  It has to be.  There are a lot of things we can slide on, but my kids being where they are supposed to be and in the care of the right person at the right time, this is not negotiable.  I work 45 miles away from my home; two hours of my day is spent commuting.  Because my son rides the special needs bus, pickups and dropoffs have to be orchestrated through the school and schedule changes take up to five days to implement.  Knowing ahead of time what's going to be happening and when gives me an enormous (and highly illusionary) sense of control.

So you can imagine when, on a Tuesday, my husband announced he would be leaving over the weekend to go to Nebraska for six weeks, I put my head between my knees and hyperventilated just a little bit (well, maybe more than a little bit). 

I'd gotten pretty spoiled having a stay-home man all summer.  I didn't have to worry about schedules and buses and where to be and when - I just had to get up on time, get ready on time and show up to work. 

My husband was not impressed by my impending sense of doom.  "You'll figure it out," he said.  "You always do."  BUT THAT'S NOT THE POINT, DAMMIT.  DOESN'T ANYONE CARE THAT I'M PANICKING HERE?  And I did get it figured out, with the help of my friend Debbie and my mother.  BUT STILL NOT THE POINT.

So we're sailing along pretty splendidly here.  I get to see my parents at least four days a week when I stop after work to pick up the kids, who have completed most of their homework and been fed.  Four days a week Debbie comes over and makes sure they're out the door in time to get on the bus and then feeds and waters all the animals.  Did I mention I have some pretty awesome friends, not to mention parents?

It never pays to feel too much like you've got things under control.

Yesterday afternoon I discovered that my ex's schedule would be dramatically changing - ON MONDAY.   All of my arrangements for morning and after school care just got flushed down the commode. 

My husband had the bad luck to call me about five minutes after that.  I treated him to about thirty seconds of hyperventilating and exited the call.

He hasn't called me back since, and I'm not sure if he's avoiding me completely or just too busy.  I'm fairly sure its avoidance.  Hell, I'd avoid me right now if it were possible.

Its not that I can't manage it, of course I can manage it.  Its that I would just once in a while like some empathy for the fact that its not easy, that its stressful, not to mention lonely and thankless.  It would be nice if there were some kind of monetary compensation or fancy award for being the "Queen of Managing Everything."  Oh, yes, it would.

 

 

 

Partway there

This school year has been markedly different for both of the kids.  My daughter is coming along swimmingly in the personal hygiene department, and you busy moms out there will know what I mean when I say that its a quantum leap forward to have one kid who doesn't need your help in the shower.  Race Car Man is better too.  He now takes showers instead of baths, and his biggest accomplishment has been to teach himself to tolerate the water on his face so that I can wash AND rinse his hair without major histrionics. 

They've both gotten medication compliant, which is another huge relief.  They were pretty good for SG over the summer, but I noticed that if I was home when it was meds time, at least one of them would raise hell for no apparent reason.  I surmised, probably correctly, that the drama was simply for my benefit.  After all, don't most kids behave better with people who are not their parents?  With that assessment of the situation in mind, one of the things I was most dreading about SG being gone this fall was mornings.  I was completely prepared for the marathon mornings I remember so well from last year.  I spent quite a bit of time girding my loins, as it were, for the morning battle, only to find myself completely shocked (and about as delighted as a dog rolling in horse shit)  when no one actually wanted to engage in it.  I put together their meds and deliver them to my kids...and they take them. 

While you finish picking your jaw up off the floor, let me also say that Race Car Man has improved so much over last year with his efforts to manage his behavior that he actually got an award at the school assembly last week.

I KNOW, RIGHT????  I'm shocked the local paper didn't see this as a newsworthy event!

There are still struggles, of course.  Last year my son's nemesis was a bigger kid I'll call "Abel."  Abel is the same age as my Amazon Girl and he is on the spectrum, as are all of the 10 kids in Race Car Man's classroom.  For whatever reason, Abel was my son's kryptonite.  Everytime he made a noise or soothed himself with rocking or flapping, Race Car Man would lose his MIND.  He got suspended for three days because for no apparent reason whatsoever, he hauled off and hit poor Abel while the kid was doing nothing more than sitting on a bench and talking to himself.  We worked very hard at challenging these behaviors, removing desired activities and having many many discussions on making choices about behavior.  There were a few times I simply lost my temper and yelled at him, I'm not proud to say.   How long does it take to teach a kid with ASD that hitting people when you're a grownup doesn't just get you in trouble at school - it gets you fired, and possibly even arrested. 

I anticipated we would see continued problems with Abel, but since the universe frequently likes to remind me I'm not as smart as I think I am, Abel and Race Car Man are best pals this year. 

We are not free, however, of the joy of a mortal enemy.  Race Car Man's kryptonite presented itself this school year in the form of a boy I'll call "Sam."  Sam, like Abel, tends to make a lot of noise as he copes with the messges his brain is sending him.  He also - in my opinion - is kind of a little shit.  (And yes, my son is kind of a little shit too, sometimes, but he's MY little shit and therefore adorable).  Almost every day my son comes home in tears because Sam has called him names or made fun of him.  The day my son got in trouble for hitting Sam, it was (according to Race Car Man) because Sam called him a 'DUMBASS.'  I was so tempted not to punish him, because dammit, I think being called a Dumbass is pretty antagonizing even if you don't have autism.  BUT, I know we need to reinforce the hitting is a bad idea thing, so I made him write "I will not hit" twenty times before doing his homework.  Then I gave him ice cream.

Each week I get an average of three emails from his teacher, updating me on the latest thing my son has done to Sam.  Then the other night I was looking through some schoolwork he had brought home.  My son's class, which is a special program for children with autism, works on social skills and behavior management.  They do a lot of work on identifying emotions and interpreting facial expression.  In his folder was a sheaf of papers stapled together.  On the front of each page, he had colored in the face of a monkey making various facial expressions, and he had correctly identified the emotions the monkey was displaying - sad, mad, happy.  On the back of each sheet, he had written a series of sentences about his own experiences.  On the sheet for "sad," I read:

I feel sad when:

I get (sic) bullied.

The next day I sent an email to his teacher requesting more information on how these two boys are interacting.  I told her about the name calling incident and other things my son has told me Sam does to him, such as enlisting other classmates in making fun of Race Car Man or deliberately excluding him from activities.  I inquired as to which kid was instigating the conflicts.  I suggested we might need to meet to discuss ways to help my son cope with this other boy in a more positive way, but that from what I was hearing from my child, there may be more going on than two boys who just don't get along.

In her response she promised to investigate the name-calling and to pay closer attention to the dynamics between the two.   I trust her judgment - I know she will fairly evaluate each child's part in the conflict and report back to me,  and do everything she can to help them both make better choices.

When my son was enrolled into his current program, I was kind of in love with the idea that he would be with other kids just like him.  I had this picture in my head of some sort of Autism Utopia, where all the spectrum kids hung out together and were a big support group.  Because they all were coping with the same differences, they wouldn't seem...different.  At least not to each other.  And because they don't always share recesses with the other kids, they wouldn't have as many opportunities to get picked on by the neurotypical kids.  To find out that my son is being picked on by one of his own is enormously deflating.  I guess its not that crazy to assume that kids who struggle with their behavior would struggle with their behavior in regards to each other.

Still, I think we're making progress.

Two steps from success, two from disaster

Life is such a balancing act.

There are periods of time where I am calm, unperturbed, I have everything together.   There are other times when I feel like everything is falling apart and I'm just screwing it all up.  I would be lying if said that I was always more together than not, or that sometimes these barometric changes never occured once or twice within the same day. 

When SG was gone, there were times I really struggled to hold it together.  His prolonged absence and his occasional disgruntled reaction to my letting him know how hard a time I was having triggered my lingering abandonment issues.  I'd have days where I felt like nothing was ever going to be OK again, even when I know better than to think that way.

Now he's home, he's been home for more than a month.  I fall into the trap of being so completely content that I start telling myself that everything will always be this way, always be OK.  And that's a trap I don't need to fall into. 

I suppose there is tipping point between the dramatic rise and fall where I am grateful for all that is going well, I am coping moderately fine with the things that are difficult, and I know and accept that things could be a whole lot better or a whole lot worse, and probably will be some of both before my turn on the carousel pony is over.  I know there are a lot of things I'm able to cope with better than I used to.  There are a lot of things I've given up trying to control and other things I'm still working on letting go of.  There are also, truthfully, many things I know that could stand to be improved.  Some things I'll very likely gain ground on and there others I quite possibly never will address.

I'm challenged at home and at work right now.  Not with the husband, thankfully.  SG is relatively unperturbable, he is fun to hang around with and the needle is staying fairly reliably in the "awesome" segment of the dial.  Thank God for that. 

I've been very fortunate, particularly in the last few years, to report up a chain of command of people I respect and who have been more than willing to mentor me.   Like a lot of people, I've worked for a wide range of managers, some great, some horrid.  I really appreciate a manager who doesn't beat around the bush, who lets you know what you did wrong and then doesn't remind you about it forever, who lets you know when you've done well, and who gives you good advice with the sincere intention of helping you to be successful in your environment.  I have rarely worked in a place where I had the level of trust in my manager and my manager's manager that I do currently.  I'm pretty damn grateful for my job and my company.  It helps that I really love what I do.  I have mentors and I have some great role models.

But like every work environment, things can change.  No, let me rephrase that:  things WILL change.  No company or culture or group or individual can stay the same forever.  As we move forward with some big projects looking to grow our business, I know my little corner of the world will change.  I need to seek the opportunities that change provides, accept that change will come, and find ways to support my people in ways that help them succeed in an environment that requires flexibility and ingenuity.  We need to continually find ways to do things better, and sometimes that means blowing it up and turning it into something completely new.  I don't think I can be a good manager if I don't find ways to keep the moments of "OHMAHGAH I'M SO STRESSED OUT TODAY" from taking over my frontal lobe.  You can't have much order and serenity inside your organization if your leadership is falling apart.

It feels like a big responsibility.

On the home front, I've made a friend recently who is a wonderful, if somewhat exhausting person.  She's boarding her horse with me, and because of her circumstances, we are bartering some property improvements and chores for the feeding and provisioning for her lovely little horse. 

Did I mention that my ex and I rarely had people over?

Well, we pretty much didn't.  Like EVER.  And of course I've mentioned that since we split up I opened my doors a little more often, but to those of you who truly enjoy entertaining I probably still look like a complete hermit.  Then I met SG, and we've had friends and family over more often than I've been used to, but I like it. And it wasn't overwhelming, but it also wasn't every day.  Now I've got someone who is coming by almost every day and interacting with us, and I'm not saying its bad, because its not -- its just a big change for someone who is used to being able to walk around half undressed most of the time.  And there are many positives -- my daughter is getting riding lessons from someone who is much more patient with her than I.  Things I need to get to and don't ever have the time to do are starting to get done.  My old horse is getting some exercise.   I've made a new friend who is kind and funny and unique.

I can wish for my little pond to always look the same, every day, but the wise little voice inside me says that stagnant water pretty quickly fills up with green slimy things.  You need a system of flush and intake to keep the water clear and potable.  So it is with my house and my life.  Change is inevitable, and change is not necessarily bad. 

Still, about once a day, I find myself starting to pace and talk to myself.  Less frequently, thankfully, I get the sensation that I'm standing on the edge of a cliff, ready to step off, and I don't know the first thing about how to put on a parachute so I have no idea if I'm going to hit the air floating or go splat!

Inner peace, baby.  I"m working on that.

 

The Language of Special Needs

I got a text this weekend from a friend.  She is a young adult "on the spectrum," as it were, and she had somewhat of a Facebook argument with another woman over a meme the lady posted about Autism.  My friend didn't like the implication that autism is not a disability but simply a difference and made her opinion known.  She wrote about the different issues children and adults can and often do have when they have an Autism Spectrum Disorder.  She responded from her own experience, in all earnestness. In response, apparently, the original poster called her a "bitch" and wrote that autism isn't a serious issue and said people need to stop complaining about it.

I have such a depth of feeling about this.  Its an internal conflict in a lot of ways,  because technically, my daughter's bipolar and ADHD and my son's Autism and associated disorders most certainly will cause them difficulties neurotypical people don't have or ever have to think about.  On the other hand, I think both of my children are capable of doing just about anything they set their minds to, and I refuse to let them use their issues as a crutch or an excuse.  Just yesterday, my daughter remarked in passing that her brother couldn't keep himself from fighting because of his autism. 

I told her,  "I'm not sure I agree with that.  Do you think he gets to just fight with people without consequences?  I don't.  I think he has to work harder than other people to control his behavior, but he doesn't get a free pass to just behave any old way he wants to, honey."   She thought about this.  "So its just like I get in trouble for fighting with Race Car Man even though I have bipolar?" 

Exactly.

On one level, I think that a cure for autism isn't necessarily on the horizon.  And no, for the record, I don't buy into Jenny McCarthy's assertion that her son has been "cured" of autism.  I think there are a lot of therapies and treatments and foods and supplements that can help kids and adults with autism function better and more successfully, but we don't know enough yet about the causes of autism and the inner workings of the autistic brain to be able to have a cure.  Should we be funding research for a cure?  Absolutely.  But at the same time, we need to be spending our time and our dollars making sure that we give kids with autism the skills they're going to need to live as adults with autism.  We need to be cautious of the words we use around autism so that we are not being derogatory or having pejorative overtones about a community within our larger community.  People with autism don't necessarily want to hear about the ways they are different -- they are looking for the ways they can fit in.  And frankly, some of the characteristics they bear as a result of their autism are truly gifts.   

I don't think you can look at someone like Temple Grandin, whose difference in executive functioning make it possible for her to understand animal behavior in a way that most neurotypicals can't begin to understand, and think of her autism as a 'disability.' 

There are a lot of conflicting opinions in the autism community about the language that we use and the way we portray people who have autism.  A lot of advocacy groups and adults living with autism are extremely opposed to the tactics of the group Autism Speaks.  The opposition stems from a number of reasons, primarily because Autism Speaks doesn't include a large enough percentage of adults with autism in their executive leadership.  Many parents and families of people with autism and many adults with autism also take issue with the way autism is portrayed by Autism Speaks.  They feel personally denigrated by videos and messages that talk about how terrible life is for families of kids with autism, by descriptions of their more challenging behaviors and thoughts.  There are hundreds of thousands of adults with autism living successful lives, managing careers and marriages and raising children. 

There are two sides to every coin, and autism is no exception.   The divisions within the autism community are understandable, impossible to ignore, and perhaps uncrossable.   Because autism is a spectrum disorder with greatly ranging degrees of affect, everyone's experience will be different.  Because no two people react to the same stimuli in the same way, one person's response to dealing with autism and their perception of how it impacts them will vary greatly from anothers. 

I don't believe autism has ruined our lives, I just think autism has given us some challenges we might not otherwise face.  But who am I to tell a mother whose marriage has failed and whose non-verbal child is a frequent eloper or who is physically violent that she's wrong if she feels differently than I?  Just as I would want her to understand where I'm coming from, I sure as hell bet she wants me to walk a mile in her shoes, too.  I also bet that there are times she wishes someone would find a cure right this fucking minute for the behaviors that make her life incredibly difficult and stressful. 

We take issue when a mother with an autistic child kills her child and then takes her own life.  We don't want the world to think that autism is this terrible, dark thing that can't be overcome.  We, as parents, don't want anyone to look at our children and think these things about them.  We want people to see the beauty and the strengths and the uniqueness in them.  Or at least, I suppose that we do.  But I don't know what the mother whose son was denied school placement was thinking.  I can't speak for her at all.  Clearly she was overwhelmed, probably under-supported, and desperate.  The mother of the adult son with autism was said to have a very loving relationship with her son.  What were her thoughts as she committed this terrible act?  We will never know. 

Parenting a child with autism or pediatric mental illness can be hard, terribly hard.  For most of us it is NOT the end of the world.  Having autism and learning to cope with a brain that is not wired to function in the typical world can be anywhere between 'okay' and 'devastating,' depending on the individual and their place on the spectrum and the support, resources and therapies available to them.   Holding your bipolar child's needs close to your heart as you deal with them on the days they are unable to be loving or likable isn't very easy. 

We can't forget the families of the severely autistic individuals who rely on lifelong care.  As with any condition that renders a person unable to take care of their own basic needs, life becomes far more challenging and difficult, stressful and scary.  But those things don't have to mean that the person with autism and their family don't also have love and joy and wonderful times together.   The thing is, we can't deny that at least for some families, the good days are scarce and the bad days are the norm.  Some people aren't as capable of handling that as others.

Is it just too pat to say "Life is what you make it" ?  Life isn't fair, certainly.  We are all born with different abilities, strengths and weaknesses.  As humans we have the same rights, but we don't all have equal capabilities.  We must acknowledge this basic fact and work upwards from there.  My kids have stuff they've got to overcome, and sometimes that's really hard to cope with.  But cope with we must. There's more than coping, though.  We work to meet challenges and we celebrate our successes.  We learn from the bad days and we are thankful for the days that are good.  We cry, we rage, we beat our fists on the concrete, and then we get up and walk out the door with our hopes intact.  Some of us, though, throw in the towel.  Some of us don't see the up side.  Their experience doesn't invalidate my own; nor mine theirs.

Both extremes and neither. 

Can we live with that?  I don't think we have a choice.

 

 

 

On trying to have the right attitude

I am alive again.  Sort of.

My new doc has diagnosed me with low thyroid and last week I started medication.  Whether it was the 80-plus degree weather all weekend or the new medication, my energy kicked back into gear for the first time in a long time.  I did dishes and laundry, cleaned floors, took the dog to the vet,  pulled the mats out of the horse trailer and scrubbed them, bought horse feed, cleaned stalls, groomed horses, took the kids to the circus and had dinner with my parents.

Last night our hot weather broke with a vengeance.  The Eastern Washington sky lit up like a Christmas tree for several hours, with lightning and thunder from all sides.  As the colder air moved in, we also got some seriously heavy winds at the house.  Usually the storms don't bother the kids, but for some reason this one had my son feeling anxious and afraid.  I don't often let the kids sleep in my bed, but if ever a night called for a sleepover with Mom, this did.  The storm kept up well past our bedtime, but even after it finally quieted down enough for us to sleep, the jostling and the Move over!'s meant none of us slept much. 

It made for a tough morning.  Both the kids were downright buggers.  I was really late for work, as a result.   Nobody wanted to take medication, nobody wanted to get dressed, nobody wanted to do much of anything except fight with everyone else and make a lot of racket.  And its hard when you haven't gotten enough sleep to be very cognizant of the fact that my children are not struggling because they want to make my life miserable, my children are struggling because they are exhausted and its even harder for them to cope with life's demands than it is for their mother.

It was easy last weekend to have a good mindset about SG being gone.  I felt good, I was getting things accomplished, the house looked good and I was managing it all without too much struggle.  This morning had me singing a different tune.  This morning I felt resentful and tired and frustrated with being what I've come to think of as a "married single." 

When did I forget all the stuff I learned when I really was a single mom?

I had day after day after day just like this morning without the hope of an end in sight.  It was HARD.  I didn't think for one second I would ever have a partner in my life to share the burden with me.  It was not a truly irrational assumption to make that there aren't many people out there who would be willing to partner up with a middle-aged woman with two high-needs/special-needs children, an aging house, a mountain of debt and more animals than hitched a ride on the ark. 

I read some of my blog posts from those days and I am surprised at how much I was able to put a positive face on things, because I know exactly how tired and hopeless I often felt.

When I met SG I was really hesitant about getting involved with someone.  First of all, I didn't really think I was by any means a "catch" and I wasn't sure he really understood what he was getting into.  Second, I didn't want to burden a partner with issues that had nothing to do with him.  We've had a lot of discussion around what things were mine to deal with and what things were "ours" and that I didn't expect him to feel responsible for things that weren't his responsibility.    But there's never been a moment where he's hesitated to step in and shoulder the load of my kids or my animals or the shitstorm of chores this rural lifestyle requires.  And the more he does that, the more I come to rely on him being here to keeping doing it.

Because he helps so much, the contrast in my life between "together" and "apart" is about as stark as it can possibly be.  I'm not dependent on him to survive, oh hell no.  I've done this before, I'll do it again.  There's a difference between being dependent on someone else and knowing you can depend on them. 

If nothing else, our situation allows me to be grateful for how much of a good partner SG is to me and to realize how generous and loving a man he is.  It also reminds me not to complain to much about having to do the heavy lifting on a temporary basis, because there are millions of moms and dads out there who are doing all this and more and they don't have a partner to help them, ever, or parents who can pitch in like mine do.  They may not have the good fortune of an employer like mine, who not only says they value families, but put their money where their mouth is and don't make a hard situation even harder by punishing me for being late when days like today happen.

So I'll acknowledge that today I am tired and dragging and feeling frustrated as a parent and a partner, but that things could be a hell of a lot worse and I really can't wait until my husband comes home.

 

 

 

Sometimes you need to fly

Tonight my husband leaves again.  He will be back in six weeks, give or take. 

We spent the weekend trying to get in as much quality time together as we could as a couple and as a family while still making sure that he wasn't leaving me with a house full of dishes and laundry and a yard that needed more attention than I would be able to provide flying solo for the next month and a half.

I think one of the reasons SG and I click so well is that we share so many traits.  We are absent minded, we are easily distracted.  We always mean well, but we are often clumsy. For example, last week he and Race Car Man managed as a morning project to drop my almost-brand-new laptop on the floor off the breakfast counter.  Its about a three and a half foot drop. 

As you might expect, the laptop did not appreciate this Big Adventure and all of its internals went on permanent strike to protest.

We made three trips to the big box electronics store over the course of the week to drop off the machine, drop off rescue disks, and ultimately to pay to have the hard drive removed and sent off to another location to have its data recovered because it could not be powered up to do the recovery locally.  In the meantime, I've replaced it with something no one but me is allowed to touch, and when I have the time and funds to get the old one repaired, it can become the laptop everyone else gets to use.

Driving back and forth to the big box electronics store involved much negotiating with the Littles.  Two parking lots away, the traveling carnival was in town.   When its 8 pm on a weeknight and a 4:30 alarm clock is staring you in the face, the last thing you want to do is the carnival.  But when you're seven years old and the lights of the ferris wheel fill up the sky, the ONLY thing you want to do is the carnival. We put them off and put them off, but finally yesterday afternoon I agreed to spend a small fortune on ride tickets.

While Amazon Girl and I rode the ferris wheel together, SG took Race Car man to ride the Jet Planes.  When it got to be his turn in line, though, he was too scared to get on.  After Amazon Girl and I got off the ferris wheel, I talked to him about the ride.  I told him his sister would go on it with him if he would feel better.  He thought that might be fine, so we got back in line, but when we got to the man running the ride, we were told that my Amazonian Princess was actually too tall for the ride.  Race Car man would have to go it alone. 

He took a few minutes to think about that.  His desire to ride on the green jet finally overrode his fear and he clambered aboard.

This picture doesn't really do justice to the expression on his face most of the ride.  It was a combination of joy and awe.  He loved every second of it, almost as much as his sister enjoyed the ferris wheel:

Its hard to be unhappy about anything with that kind of joy sitting next to you in a bucket car.

As we were winding down, the little guy decided to spend his last ticket on another ride in the jet plane.  He enjoyed it so much the operator let him stay on and have yet another ride even though he didn't have another ticket.  I hope he knows how much his small act of kindness meant to us.

Sometimes I get my nose out of joint when I hear people talking about kids behaving poorly in public, blaming parents.  I have a tendency to expect people to react negatively when we are having a particularly bad day with anxiety or sensory issues.  But I have to admit -- people are often far more accomodating than I expect them to be.

It was a good way to cap off our Sunday afternoon.  A little sunshine, a little fresh air, some carefree time laughing and soaring through the air -- sometime you just gotta fly.