Jeans

My son is wearing jeans today.

I buy a pair every year, I put them in the closet, and I offer them regularly.

He rejects them every time and reaches for his pull-on sweats and khakis instead.

We buy out his size in those at Target twice a year.  😐

But this morning, he went upstairs to change and he came down in jeans.

Just like that.

He zipped the zipper and he buttoned the button, all by himself.

And he seems happy and comfortable – even enough to race around on his Rip Ryder before Daddy takes him to school.

When did my baby get so big and what could possibly be next?

Will he actually eat a vegetable?

I can’t wait to find out!

Happy Tuesday!

♥♥

Goodbye Holidays

I can’t believe that Christmas is over.  Honestly, I feel like I missed it.

My mom broke her ankle on the 25th and now my brain can’t wrap itself around anything but that.  Mom missed Christmas too.

When I returned home late on Christmas night, my son had already pulled down his handmade decorations.  It broke my heart and made me instantly teary to realize that our little family unit had once again been split apart on the biggest holiday of the year.  I left on Christmas afternoon and my son just thought it was over.  Makes me weepy, even now.

My mother’s house isn’t right for someone with a handicap.  We learned that when my dad was still alive, but for some reason, we never did anything very permanent about it.

Even worse, when dad passed away, we actively discarded home health equipment and eliminated entry access ramps.  Maybe that was for mostly right reasons.  We needed to move forward and put the house back together, but it kills me now to see how much we need those things.

My mom is struggling to deal with this challenge.  She is used to being very independent.  Now, she is trapped in her house and at the mercy of family and friends.

I can’t be there much and I am both possessed by guilt and protective of the energy I need for dealing with my son.  In a perfect world, I would probably have clones.  I would have a lot of clones.

But the world is far from perfect.  My mom is having a really hard time and so am I.  I was tired before this happened.  Exhausted, really.

When I got the phone call about mom’s accident, I was actually lying down.  I had just drifted off to the first afternoon nap I’d dared to take in almost a year.  My mom was scheduled to join the three of us for dinner a few hours later, but of course, she never arrived.  Instead, I got that phone call and then I left to spend Christmas at the Kaiser E.R.  At least I got to see my brothers.  Hmm.

Tomorrow starts week three.  Mom has a cast on her leg.  There’s a hospital bed in her dining room, neighbors doing the laundry, and a steady stream of friends to say hello and bring some food.  Mom’s sweet and nervous dog is discombobulated by the hubbub.  And I am still tired.

I don’t know how to shut off the constant rattle of responsibility in my brain.  Mom keeps telling me “don’t worry” and “take care of yourself” and “go, if you need to.”  But I can’t do any of that.  No matter how rough my day is, it always seems so much better than what my mom is facing right now.

She will get the cast off.  Her broken bone will likely heal. She has already had a successful surgery.  This situation is only temporary.  It really is, but none of that helps with the present.  The present sucks for everyone.  Mostly, it sucks for my mom.

It’s hard for her to do the simplest things.  This injury is exhausting, stressful and depressing.  I’ve had surgery.  I know how it is.  You get defeated pretty fast.  She has highs and lows, hope and despair.

I don’t know the solution to my own dilemma, much less to mom’s.  My little family needs something good to happen.  We three need a break, a respite from responsibility.  I don’t know how to get that.

It seems that whenever we start to relax a little, like we did on our Palm Desert weekend, something happens to remind us that we can’t let our guards down, we don’t get breaks and life isn’t fair.

I’m not at my mom’s as often or as long as I feel I should be, but I am emotionally entangled in all of this.  Daughters don’t turn off worry.  Mind-blowing concern is part of the daughter directive.  So I don’t know what to do.  Part of the mommy directive is being awake, alert and pleasant enough to make math problems out of play-doh every night, without much argument.  The two directives don’t work together.

Fail.

I just don’t feel like I’m doing any of it very well.

And now I’m too tired to write.

Happy Saturday.  😐

P.S.  A big, fat thank you to our wonderful friends, Michael and Jewyl, for cooking us a delicious meal and letting us sit in their beautiful new house to forget about the world outside for a while.  You guys always make me laugh.  I love you for that.  🙂

♥♥

#15 – Things I sorta already knew…

but learned again recently…

Never say never.   The finality of it will feel like a challenge.  (Insert far too much self-analysis here.)

No matter how careful I am, I am not careful enough to keep from splattering big dark blobs of hair color all over the carpet every time I dye my hair.

If I forget to put the sheets in the dryer until 11:00 p.m., then we have to wait until 11:40 to go to bed.

I’m too old to stay up until 11:40.

Taking a cat to the vet costs at least $500.  They always find a problem.  It’s just the same as taking your car to the shop, except there’s fur.

IKEA seems like such a good idea, until I get there, and then it just makes me achy and sad.  Like nachos.

I don’t have enough space for my junk.  (I went to IKEA looking for junk storage.)

It’s really hard to let go of the stuff that I like to make room for the stuff that I love, sooooo…the stuff that I love is waiting in drawers and closets and piles and boxes.  Waiting.  And the stuff that I only like is hanging on the walls.  Sigh.  😐

Dark purple Mario fruit snacks look a lot like little balls of cat poo when I spy them on the floor in my dimly lit living room.  Their grape scent momentarily confuses me.

One of my son’s biggest challenges is communicating his long-term goals.  And by “long-term,” I mean what he wants four minutes from now.  He starts every goal by communicating only the first step: “I want Mama up.”  His ultimate objective is a mystery that only he can know until each step is completed, in order, one at a time.  I try to get more information by asking “I want Mama up because…??”  On a good day he will finish the sentence – “I want Mama up, because I want Mama to be standing.”  😐

When Oreo cookies go on sale, husband or I must buy them.  Must.  Buy.  Them.  Double Stuff.

My older brother knows way more about books than I ever will.

I used to love playing jacks.  The metal kind.  They were heavy and offered a satisfying tactile experience.  The new, too-big-for-little-fingers, neon-colored, sticks-to-itself-rubber jacks just aren’t the same.  😐

Giant umbrellas will pop open in the car.  Twice.

If I really enjoy the hotel jacuzzi, then I will not have a card key to get back into the building until I am freezing again.  Freezing.  In a wet swimsuit.  In the dark.  Other hotel guests will stare at me when I walk around through the parking lot to find an open door.  I will not find an open door.

Six quarts of crock pot vegetable soup = six quarts of trash if you add just one ingredient that doesn’t have quite the right flavor.  I added two.  😦  Tarragon and green onions…what was I thinking?!?  Darn it!

If I decide at the last minute to take my cat to the vet, then I will forget to do something else, like put my son’s lunch in his backpack.

If I forget to put my son’s lunch is his backpack, my sense of self-worth in the motherhood department will look like a ball on New Year’s Eve – sparkling and determined (until the wrong is righted), then dark and low for a really long time.  Oy.

I can never have enough tin ornaments.

When I am at my lowest, a thrift store visit is sometimes all the pick-me-up I need, especially when it yields cheery little creatures.

Happy Tuesday!
♥♥

Tired

I need a serious break from my child this week.

I can’t deal with the obsessive compulsive behaviors.

He wants us to hold his hand through absolutely everything.

Last night, we discussed the fact that he will need medication one day.

We won’t do that now, while he is young, but I do see that it’s true for his future.  My kid will need meds to get through his day.

That makes me sad.  Dealing with him makes me sad too, but watching him struggle with everything makes me the saddest of all.

He makes such progress.  Today he even asked me why I was crying.  Miraculous!  A year ago he wouldn’t have noticed, much less thought enough of it to form a perfect question.

And yet, he still cannot articulate many of his interests.  Exhaustion from trying to guess them and get him to say them is frequently what motivates my tears in the first place.  He fatigues me.

During his shower tonight, he called me into the bathroom four times and not once could he tell me what he wanted.  We haven’t stayed in the bathroom with him for over a year.  It’s not a new thing, but tonight he acted like it was.  He regresses.  I lose my mind.

It is rare that I am physically comfortable in the presence of my child.  The moment I get off my bad feet, he wants me on them again.  The second I go into the bathroom or the garage or upstairs or downstairs, he wants me to be in the kitchen or the bedroom or the front room or outside.  Today, I ate my cereal while standing in the kitchen.  Standing, because it was easier to just stay up after he made me leave my chair the third time.

Right now he is paralyzed on the stairs.  He has taken a bath, is stark naked, and probably is getting cold.  Our house is an ice box.  But he is paralyzed by something he can’t put into words.  I have tried to pull it out of him.  I figure it has something to do with the pajamas.  I know he doesn’t like the two pairs of pajama pants in the drawer right now, but even my asking about that gets nothing from him.  He just sits there.  He wants something from me, but he has no means of communicating what it is.  And I am desperately sick of the guessing game.

We still have no regular babysitter.  My mom and brother help out how and when they can, but no one comes to our house where he is the most comfortable.  No one lets us leave him here to get away for a moment together.  Our marriage suffers.  Our sanity wanes.

Husband has just pulled into the garage and the child is finally clothed and watching his video.

I’m too tired to write anything else.

Happy Friday.

♥♥

Snow Day & Slow Day

Weeks have passed since my last post, so there’s plenty to write…

but Thursday night, when I sat down to share highlights of our recent trip to the desert, all I could think about was the fact that my son was absolutely FREAKING out.

He’s sick again.  Or maybe still.

He missed a few days of school earlier in the month and then we traveled and exhausted him.  And rejuvenated him.  And exhausted him.

He played in the snow at the top of the mountain.

He swam for hours in a pool heated to bathwater temperature.

He painted a car at the Children’s Discovery Museum.

He ate every snack he wanted.

He enjoyed the trip.

We all really enjoyed the trip.  Even without mascara, sunglasses or a hairbrush.

But Thursday, the boy walked in from school and started falling apart.  By 4 o’clock, he had screamed and thrown things.  It went down hill from there.

I really believe the time change has messed him up.  He’s panicky about finishing things now.  It’s dark an hour after he gets home and I think it makes him nervous about his routine.

Nothing I did on Thursday seemed to calm him down.  I tried sweet and I tried stern.  I fed him and I gave him something to drink.  I tried distraction and positive reinforcement of his few good behaviors.  But what he most wanted, I couldn’t give him.

He wanted me to stand behind him and hold onto him while he endlessly repeated a complicated series of obsessive compulsive hand gestures, chants, head ticks, etc.  I wouldn’t do it and it made him mad.

When he asks for a plain old regular hug, it melts my heart and I’m totally in, but I won’t become part of his compulsive routine.  He can depend on me for a lot, but not for that.

I know that if I give in, he will expect it of me and of whomever else is with him.  He won’t be able to function without a human tool to manipulate as he sees fit.  Not everyone will understand, and as he ages and gets taller and stronger, his tantrums about it will be harder to manage.  No, I can’t give in.

Around 4:30, we had an appraiser over to measure and take photos of the house.  We’re refinancing and it’s required by law.  Just one more total violation of privacy rights in the course of a day.  Grrrrrrr.  But that’s another post.

The entire time the appraiser was here, my son was screaming at the top of his lungs.  The appraiser was not someone I trusted, so I couldn’t leave him to wander upstairs alone.  My son didn’t like that I left the room.  Despite the fact that he could see me on the landing above, he was furious and raging.

The dining chair my son “sat” in has become a squeaking, rickety mess because of his consistently ruthless shaking, slamming, scooting, and jumping.  Poor chair.  It’s loud now.  I feel like it’s crying for help.

I know my son is.  The problem with his cries is that I don’t know how to answer them sometimes.  I don’t always know what will change the evening for us.  I was exhausted by his behavior and the irritating sound of the chair’s complaints.  The two were deafening together.

I’m sure the appraiser thought we were both nuts.  I can hardly wait to see if the chaos of our home detracted from the value of our house.

Yesterday, I kept my son home from school.  It helped.  His obsessive compulsive episodes were frequent, but less intense than the day before.

We spent a lot of time at the table – cutting, pasting, taping, stapling.

I cut out pictures from ZooNews magazines and pasted them onto card stock.  This has become my favorite kind of Christmas ornament.

Here is my favorite from last year:

The boy made a turkey.

He wins.

I ♥ this turkey.

Happy Saturday!

P.S.  One of my favorite things about the desert?   Brandini Toffee.  Oh my oh my oh my.

P.P.S.  Nothing Bundt Cakes finally opened in Mission Valley.  The pumpkin cake sample sent me straight over the moon.  Must.  Have.  More.

♥♥

Long Beach Flea Market

I don’t know how often I can come on here and say the same things.

Life is hard.  And easy.  And ugly.  And beautiful.

Life is hard…

because my autistic son needs everything to be a certain way and, despite the good intentions of everyone in my life, very few really understand how insanely difficult it is to parent him.

He seems so incredibly normal – whatever the hell “normal” is.  He is beautiful.  He is smart.  He is talkative and cheerful.  He is happy and animated and very cooperative.  Until he isn’t.

Over the two-week break, he hit me a few times.  😦  He pushed me too.  On one of the days he had a meltdown like I can’t even describe.  He screamed, he broke things.  The usual.

He yells about everything.  “No take the plate to the kitchen!”  “No mama say!”  “No mama singing!”  “No music!”  “No.  No.  No!”

And then there’s the OCD stuff…

He has a thing about the pantry door.  He has to close it a certain way, at a certain time, repeatedly.  He chants his little chants, he swings it shut and pulls it open and swings it shut and pulls it open and swings it shut and pulls it open and SLAMS it closed.  And all of the things that hang from the inside of the door go crashing to the tile below.  LOUD.  LOUD.  LOUD.

And the bathroom door.  He closes and opens it too.  All the time.  Just because.

He writes math problems for himself every night.  He leaves the papers all over the table.  He does this when I am in the pit of the day’s fatigue.  Consequently, his math papers never get picked up.  Our house is an overwhelming wreck.  It depresses me.  I am tired and life is hard.

Life is easy…

because I have three fabulous moms and a good friend who listen to all of it.  Life is easy because husband knows how it is and he’s here everyday seeing it, feeling it, and being in it with me.  And when he isn’t here to make it easier on me, he’s out there to make it easier on me.  He works so that I can take care of our kid.  And our house.  And our laundry.  Our never ending, steaming mountains of laundry.

Life is ugly…

because of stupid, evil, mean people who make me sick with worry for my son…and his future…and the potential dangers that await him.

Life is beautiful…

because the yelling, pushing, screaming, toy throwing little boy is also sweet and kind and funny and he makes up songs about silly things like my jiggly arms.  😀  I love him.

Life is beautiful because I get to see my good friend every few months and we always have a great day together somewhere.  On Sunday, we went to the Long Beach Flea Market and I bought a water fountain.  It’s perfect for our little yard, but it weighs a gazillion pounds.

Life is beautiful because the vendor wanted $75 and we talked him down to $50.

Life is beautiful because my friend carried the dirty top part of the fountain a great distance to my car for me.

Life is beautiful because there is ibuprofen to ease the pain and stupidity of carrying the lower section of the fountain by myself.  Day four and I am still achy breaky.

Life is beautiful because we had a very pleasant lunch at Bono’s Long Beach with the best creme brulee I have ever tasted in my life.  The portion was HUGE and my friend didn’t want any.  🙂  Thank you, silly friend.

Life is beautiful because I also found a book for my brother, a liquid timer for my son, and some Bit-O-Honey candy at Powell’s (best old timey candy store ever) for my husband.

I got these guys for me:

Their bodies are hinged so you can sway their little legs back and forth if you want to.  I know you want to.  🙂

Life is life.

Happy Wednesday!

♥♥

A letter, a nervous knock-out & a couple of pumpkins.

Post This

I got a letter in the mail last week.

I’m talking about an actual, two-page, handwritten letter, complete with family update, inside jokes and miscellaneous witticisms.

Are you jealous?

I am lucky.

Truth be told, I invested a few notes of my own to get this amazing return.

What can I say?  I have a thing for pretty stationery.  And stickers too.  I can’t just stockpile it all forever, so I sent cards to six or seven people on my address list a few weeks ago.

And I got a letter back.  🙂

It came from a 90-year-old friend of the family.  She lives in town, but I never see her, so it was lovely to read something she had written just for me.

I highly recommend that you send out some notes.  These days, snail mail is a luxurious treat and it’s still relatively cheap to send.  You might even get something spectacular in return!

That’s your assignment…

Go!  Write!  Now!

TKO OH NO!

The boy had the big sedated dental appointment last week.

I think we did a good job talking to him about it.  We explained it well in advance, I put it on the calendar, and we brought it up everyday for almost a month.

He knew what would happen and he even seemed proud of himself for having the information to talk about.  “We’re going to the sleep dentist!”

He was quite a little trooper too.  We explained the food restrictions and he never even asked for his morning chocolate milk or snack.

He dressed and rode in the car without complaint and he waited patiently through every part of the process at the hospital.

He wore the gown, he held out his arm for blood pressure, he got on the scale and he used the bathroom when we told him to.

He was a model of compliance…

right up until the moment he was on the table in the O.R.  😦

I was right there with him and I really do think that helped.  I kept my cool and I saw his body briefly relax when our eyes locked, but it was a losing battle.

The nurses, the anesthesiologist, the other techs – five people in all – surrounded him and tried to do things quickly.

I get it.  There are a zillion kids out there, only a limited number of surgical teams, rooms, etc.  There is no space or time for letting my autistic son catch up and comply.  They had to assume he never would, so they just dove in and grabbed him.

As you can imagine, he freaked the hell right out.  I stayed calm and talked softly, but it was tough to watch.

It took all of them to hold him down.  Well, all except the one wise nurse who heeded my warning about too many people in his face.  I figured she was the only parent in the room.  Before I even finished my comment, she took a step back.  I love her.

The others forged ahead and managed to get the mask over his face.  He collapsed back onto the table pretty fast, but his eyelids were purplish and fluttering, so I knew he wasn’t done struggling.  It made me sad to see that.  I kissed him and told him what a good job he did.

They put a tube up his nose after I left.  The gas through that would knock him out harder.

One of the nurses took me back down the hall.  As we walked, he said “you know, your son is only going to get stronger.  Next time, maybe you can ask the doctor for some medication to make him drowsy in pre-op, so that the mask isn’t as traumatic.”

Why the hell no one suggested that this time, I don’t know.  It kind of pissed me off.  😡

I made it back to my husband and ripped off my tight paper goofy suit.  I made Husband promise to erase the memory of that vision from his head.  Those suits aren’t really meant for rubenesque women.  😳

Husband followed me out of the building.  I led him thirty yards from the door and behind a big pillar near the parking garage before I started crying.

There wasn’t really anything to say.  I was sad that only one of us was allowed to go in and I was tortured by the fear I had seen in our son’s little face.  Husband understood and hugged me.  Then we ate bad food and waited.

The boy woke up hard and was mad about having to stay so long in the post-op bed, but he was basically okay.

He came through everything emotionally and physically drained, but he was eager to go back to school the next day, so we knew he would be fine.

The net result of the whole experience was positive.  We learned some things for next time and the boy’s teeth are in pretty good shape.

And the most important thing?  During the struggle in the O.R., he said “all done” over and over again. That may not seem significant, but it’s really quite huge.

He doesn’t communicate well under duress.  He loses his words and sometimes violently tantrums or becomes eerily still and stuck when he’s upset or frightened or hurt.

This was a worst case scenario for him – a cold scary room with weird lights, odd noises, and a bunch of strangers grabbing at him – and he perfectly articulated how he was feeling.  “All done!”

All done, indeed.  😐  I felt that way too.

I don’t think I realized until I dropped him at school the next morning just how much dread and anxiety coursed through my body in the days before the appointment.

Looking back on the last few weeks, I am reminded that heightened stress often keeps me from writing.

I am so glad we don’t have to do this again anytime soon.

I don’t think my kid, my blog, or I can take it!

Fall Decorating

I stowed a few pumpkins in the china hutch this week.

Then I came to the conclusion that I need to get the hutch out of this room.  😦

It’s just too huge for this choppy, awkward space.  I love it, but it limits what else we can do.

Stay tuned for the next round of what-the-hell-am-I-doing-with-my-house?

Sigh.

It never ends.

Happy Wednesday!

♥♥