Stuff That Helps My Autistic Kid – #1 in a series

Turning on the subtitles when he watches his favorite movies.

My son didn’t start talking until he was four years old.  Even now, at ten years, he is far behind his peers and still has enormous trouble communicating when he is upset, confused, or hurting.

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Anything that helps him understand his emotions, motivate his speech, or improve his reading comprehension is important for him.  And for our family.

This morning, he came up to me and spontaneously rattled off a list of words – “sighing,” “echoing,” “stammering,” “gasping,” and “straining” – and he gave me appropriate examples of each one.

His new vocabulary came straight from the subtitles of the movie Enchanted.  Each word appears in parentheses there to describe the dialogue and emotion in the current scene.

He has read those words and listened to the associated speech a hundred times.  Now, he knows it all well enough to come up with examples of his own.

When my son first insisted on reading the subtitles a few years ago, I found it very distracting.  We displayed them by accident once or twice, and it seemed the faster we reached to click them off, the more he wanted them on.  Smart boy.  Now, he turns them on for everything.

The subtitles help his awareness of ambient (and usually meaningful) background noises as well.  In Enchanted, he knows when to listen for “truck horn honking” and “glass breaking” and he has made the connection between these words, their sounds, and the storyline.

Subtitles also make it easier to catch elusive song lyrics.  Enchanted includes some amazing and very clever musical scenes.  Despite the beautiful, clear voice of Disney princess Giselle (played by Amy Adams), some of the lyrics were a mystery to us until we read them at the foot of the screen.  Now, we laugh every time we hear and see them.

These days, I can’t imagine watching a video with my son and not having the words on.

Those subtitles help my kid.  And that helps me.  🙂

What simple things help you and your kids?

P.S. Easter Egg ears are all the rage in our house today.  🙂

♥♥

Sick Again

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The boy is home from school again today.

He missed three days last week because of a stomach bug and now he has a very annoying cold.

My kid can’t seem to catch a break.

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And neither can we.

He’s a bear when his nose is bothering him.  He wiggles and whines and screams and goes insane.  Same deal.  Different day.  Frequent topic.

It makes us all nuts.

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And there’s no real way to explain to anyone what we go through in our house.

He’s an angel out in the world.  He behaves, he is loving, he handles things.  (Except occasionally at school, but that’s another post.)

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At home though, when it’s just the two of us, or just the three of us, he is a different kid.

He is inconsolable, desperate, angry, sad, very physical, exhausting and exhausted.

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He wakes in the middle of the night, will do nothing to help himself, but is insistent that we are awake and miserable with him.

We rarely get a full night of uninterrupted sleep.

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Our son slams doors, throws toys, twists his body, flails his arms, furrows his brow, screeches, and screams, but he says nothing.

We try desperately to help him, but our efforts generally fail.

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Last night, husband actually got him to take some Motrin.  He was tired and it did help him to fall asleep, but he was up again at 3:45 and back to his routine of misery.

I asked him repeatedly what I could do for him.

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I suggested all of the usual remedies for his bothersome throat and nose and I tried to comfort him.

I offered him a snack, some water, and a hug.

Nothing worked.

At 4:30, I gave up and told him I was going back to bed.

I closed the door to our room, but that made him crazy.

He got louder and louder and finally crashed something into the door.

Husband got up that time.

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This morning has shown more of the same.

The boy is miserable from the cold and he wants everyone to know it and feel it right along with him.  It’s maddening.

He took some more Motrin about an hour ago.  He has eaten a hot dog and even exercised at my urging, but it’s going to be a long day in what already feels like an insanely long week.

Husband is gone for a few hours to catch up with a friend and I will get out for a while when he comes back, but I don’t know how far that will go toward preserving our sanity today.

It’s 12:15 p.m. and I’ve yet to make it out of my pajamas and into the shower.  My hair is dirty and flat.  My skin is colorless.  Honestly, I look like the sick one.

Stress.

We need a babysitter.

I’m starting to forget what my laughter sounds like.

P.S.  The best thing to happen today?  I got out the camera to make a video of his on-going tantrum and suddenly he’s a model – posing, smiling, saying “cheese” for all these photos.

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He’s on the couch, watching a video now.  Maybe I will get a shower after all.

♥♥

Meatballs, Sniffles & Christmas

My son just ate a meatball.  It wasn’t a homemade masterpiece, but I don’t care about that.  It was this…

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and that is good enough!

When I put the bowl in front of him, he did his usual visual inspection and sniff test, but then he just popped the spoon into his mouth with a meatball on it!  Then he did it again.  And again!

He ate three meatballs and several bites of the pasta and sauce along with them.  For a child who exists primarily on crackers and chocolate milk, this is progress!

Sniffles

We needed some progress today because the morning hasn’t gone well.

The boy is home again with his constantly sniffling nose.  That nose drives all three of us absolutely batty.  I’ve written post after post about that nose.

It keeps us up at night and makes us nervous all day.  I swear, it sometimes seems that nose is just as responsible for my son’s challenges as any cognitive issue ever has been.

This morning, he was so annoyed by it that he started slamming his bedroom door to show his frustration.  Since we have such a tight, pressured schedule in the morning, I have no patience with that behavior.  Whatever the cause, I simply don’t have time to indulge it.  Unfortunately, I let stress get the best of me and I went overboard in response.

First, I yelled up the stairs and asked him to stop.  He slammed the door again. Then I heard myself asking him if I should call Santa and cancel Christmas.

Cancel Christmas!  Can you imagine?  I am horrible and I regret it.  It made him cry.  My lecturing loudly to him didn’t help.

What the hell is wrong with me?  After the events in Connecticut last week, what business have I to do anything other than hug my child and not let go?  I am weepy over my failure.

Cancel Christmas…sheesh!  Christmas pretty much got cancelled last year.  Remember?

There is no way I would take the joy of this season away from my son (or myself!).  So why did I say it?  Why?  Because I am an ogre.  I am a very stressed-out, over-tired ogre.

Back to the sniffles.

My son doesn’t like the doctor and he has a horrible time getting any medicine down his throat, so he just keeps sniffling.  It’s an impossible situation.

Yesterday, the school called me to come get him an hour early.  He was hitting himself, losing focus, disrupting class, all in frustration over that nose.  I didn’t get the message until it was time for him to get on the bus.

When I finally spoke to the teacher, I felt the need to promise her something.  I said I would take him to the doctor.  Honestly though, I don’t really want to.

His pediatrician doesn’t have anything new to say about this, so going to her feels like a huge waste of time for all of us.  I requested a referral to a specialist instead.  The specialist can’t see us until January 7th.  Right.  Of course.  It’s a week before Christmas.  😐

Speaking of Christmas

On a lighter note, I had lunch with an old friend this week.  It was very nice to relax and chat without having to worry about my son for a few hours.  (Thanks for playing single parent all day, husband.  🙂 )

After lunch, my friend and I went to a new Goodwill store in my mom’s neighborhood.  Shopping the thrifters at Christmas is so fun.  You find the weirdest, best stuff ever during the holidays, and it’s usually marked way down so they can clear it out.  I went to the Spring Valley AMVETS store this week too – one of my favorites.

Here are my latest treasures:

seven sugared fruit
(They’re not strung for hanging, but I love them!)

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a painted alphabet sign
(This is kind of hard to photograph since it’s already on my wall.)

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When I mused out loud to my friend about why I was drawn to the sign,
she  immediately said “because it has cute sheep.”

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So true.  So very true!  Baaa.

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and a big purple ornament

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Ornaments are a problem for me.  I can’t resist them.  They bring such excitement to my son, I find myself buying them all year.

Mostly I pick them up at thrift stores, so they’re not pricey, but they do take up space.  I try to weed out the broken, worn, or uninteresting ornaments every year, but I’d rather just add more trees, if you want know the truth.

I love ornaments, even the cheap kind that impress with only their immenseness.  Please note giant green, gold, and blue orbs personally selected by the ten-year-old:

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I also have a thing for the painted tin ornaments from Bazaar Del Mundo.  Someday, I will have a tree just for them.  For now, there are a few on the big tree and a few hanging from the chandelier:

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That’s All, Folks.

The child has discovered a long forgotten disposable camera.  He has decided that taking the entire roll of me is the thing to do.  Unfortunately, the flash is blinding me something serious.  Gotta go!

What are you up to?

♥♥

Holiday Brain Dump

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Bad Mommy

I waited too long to get my son an advent calendar from Trader Joe’s, so now they’re sold out and I feel like a bad mom.

Well okay, I felt like a bad mom before I went to Trader Joe’s.

Today, I made my son cry.  And I made my mother cry.

Just for good measure, I asked my husband if there was anything shitty I could say to him too.  Wisely, he offered no suggestions.  😐

The little boy’s upset was related to homework.  Or rather, my upset was related to the homework (and to the accompanying note of parental reprimand from the teacher.)  The little boy’s upset was related to homework and to my reaction.  Big surprise.  Might I just say, AGAIN, that I am baffled by the papers that come home with my son?

Getting him interested in looking at them is a daily nightmare for the two of us.  He is tired when he steps off the school bus.  He wants a snack and then something mindless to amuse himself for the rest of the afternoon.  Homework is painful for my child and painful for me.  We both hate it.

But enough about that.  It’s an old, worn-out problem with no solution.  I work daily not to care what the teacher or anyone else thinks of how we handle it.  Or don’t handle it.

Moving on.

Bad Daughter

I made my mother cry because I reminded her that we weren’t the best of housemates when I returned from college feeling all independent and snappy two decades ago.

I had moved back into the house with her and my dad and she and I argued sometimes.  Who wouldn’t have?  Headstrong twenty-something suddenly sleeping in her old twin bed?  I was unpleasant.

Ultimately, mom and I came to a mutual understanding that I needed to find myself a real job and somewhere else to live.  It was an excellent idea, and I am the better for having done just that, but now mom is worried.  She hadn’t remembered the low points of that summer until I burst her rosy impression over a cheap plate of pancakes at Denny’s this morning.  Sorry, Mom!  😦

So, two for two.  My son cried.  My mom cried.

I cried too, but that came after I had filled my cart at Trader Joe’s and then discovered the item I had come for, the advent calendar, couldn’t be had.  I bought every seasonal chocolate product the store carries.

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And yes, I waited until I was in the car to open the teary flood gates.

Okay, so changing the subject completely…

Husband Update

Husband is mending more each day.  He might even go back to work tomorrow – driving in his own car!  Yippee!  He is still uncomfortable at night and if you watch him for a few minutes you will notice how much he favors his right side, but he’s getting there.  The ribs, the collar bone…they are repairing themselves.

The Mission Inn Festival of Lights

We drove up to Riverside on Thursday to spend one quick night at The Mission Inn.  We sort of owed it to the boy (and ourselves) to do something spontaneous and fun to make up for the Palm Desert accident weekend.  The Mission Inn was the perfect answer.

The Festival of Lights is amazing.  There are animated characters, lighted horse carriage rides, giant nutcrackers, icicle lights, garlands, candles and falling snow too.  There are real reindeer and vendors with gingerbread, roasted nuts and miniature doughnuts available every night during the holidays.  There are Christmas carolers and a roving Santa in the restaurants.

The sleeping rooms are luxurious and full of charm.  The spa products in the bath are rich and fragrant and the windows actually open.  The beds are very comfortable and loaded with extra pillows.  The linens are crispy white and super fresh.  There are big fluffy bathrobes in the closet and the package we got came with a divinely citrus-scented aromatherapy candle.

The hotel itself is a work of art.  There is a rotunda with a spiral staircase.  There are gorgeous plazas and flowered balconies.  There are stained glass windows, catacombs and an amazing clock.  The hotel pool is walk-in warm and landscaped to feel private, even though it is surrounded by sleeping rooms.  Everything is beautiful.  Everything is humbling.  And we didn’t even see it all.  We saw a lot, but we missed far more.  Next time, I think we’ll take a guided tour just for the heck of it.

My favorite thing was the twenty-foot, ornately carved church pew sitting in the hall outside our room.  I told my husband that I would gladly tear up the inside of our house and completely rebuild our decor to accommodate that pew, if only they would let me have it.  Sigh.

One of the best things about the trip for me was the little gray striped cat who appeared at the pool when we went for a swim.  My own gray baby passed less than a week before.  It was comforting to see a similar little face so clearly interested in my activities.  When my son splashed near, this cat was just as reserved and removed as my Poupon, but when my son wandered away, the cat came a little closer and talked a little more insistently to me.  I wish I’d gone back down to visit with the cat once we were dry and dressed.  Maybe next time.

Before I change the subject yet again, I have to mention Mrs. Tiggy-Winkle’s, the store across the way from our room.  I went in once with my husband and son and immediately I knew that I’d have to return again without them.  When I did, I bought a painted metal bird and a weird little nativity set.

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Mrs. Tiggy-Winkle’s is jam-packed with the most interesting little trinkets, wrapping paper, bath soaps, whimsical tins, garden treasures, dishes, tiny paintings, knick-knacks and Christmas ornaments ever!  The hours aren’t set in stone, but it seemed to me there was someone behind the register most of the day.  It will take you some time to see everything, so be prepared to browse for a while!

Happening Now

The little boy has liberated some empty magazine files from my bedroom and is constructing makeshift body armor with scotch tape.

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thomas magazine rack armor

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The husband is playing computer games and I am dreaming of pajamas, ice cream and a better camera. 😦

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The last remaining cat has finished eating dinner alone in the kitchen.

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And tomorrow our routine starts all over again.

What are you up to?

P.S.  That Santa plaque at the top of the post is something I picked up on clearance in Bazaar Del Mundo a few years ago.  It reminds me to tell you how emotional it was for me when Santa stopped by our dinner table at the Mission Inn Restaurant the other night.  It was the first time our ten-year-old had ever met him.  Because of the many challenges our son faces just getting through a “normal” day, we have never bothered with shopping mall Santas and their incredible lines.  We’ve never been to any event where Santa was a main attraction and even the occasional Santa in front of a store or at an amusement park has always been too removed or surrounded by other children for us to have a meaningful experience.  This time, Santa came to us and asked our son what he wanted for Christmas.  Our sweet little boy told Santa what we already knew…he just wants pencils.  🙂

♥♥

My Little Angry Bird

The boy is home from school again today.  Second time this week.

Lingering sniffles set the mood, but it was a frustrating failure to instantly shuffle cards like a pro that sent him over the edge.  😦

I tried to help him learn it, but he wanted to do it himself, so hit me and threw a toy into the air.

I got mad and he started sobbing.  Right away, I knew he wasn’t going to go to school.  He just had that look about him.

He probably wouldn’t last long there anyway.  He sometimes hits his teachers and throws things in the classroom too.

In the past few weeks, the school has called on three separate occasions and asked me to pick him up early.  Last Friday, it was only twenty minutes before my phone rang.

It’s inconvenient.  There’s no denying that, but it’s really more heartbreaking than anything else.

He wants to grow up right now.  Today.  Completely.  All the way.  And he is distraught when he finds he can’t.

Somehow, my child perceives adulthood as a frustration-free zone in which he will magically know how to do everything, his words will come easily, and he will be in charge.

My poor little boy, if only there were a way to get him to really understand how very untrue that is.

The teacher made a great social story book for him.

It’s all about growing up, how you have to do it a little at a time, and even when you get there, you have to obey grown-up rules.

I think it helps him.

But this morning he was frustrated beyond reason and then paralyzed by my upset.  All he could do was sob and sit there on the couch, waiting for me to make it better.

Seven days of school to go and I have to be okay that he is desperate to miss one of them.

When he is older and (I hope) employed, he won’t be able to skip work just because he has a bad moment at home.  He will still have to go.  He will still have to listen to a boss and do his work.  He will have to learn how to smooth things out in his relationships and still manage his responsibilities.

I am intensely aware of this fact.

But he’s nine years old and he has challenges that other kids don’t have, so he gets a free pass this morning.

And a popsicle.

And then we’re going out to lunch.

P.S.  He dressed up for Gold Rush Days at school a few weeks ago.  And yes, Forty-niners did so eat Nutri-Grain bars.

♥♥

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.  🙂

♥♥