But I didn’t request a 6 a.m. wake-up call!!! Of course I’m sure!!!!

Evening fell and nothing cooled off…morning arrived and we were much in the same state.  If I haven’t lost any weight, it hasn’t been for lack of copious perspiration.

I had to chop some of J’s hair off last night; he looked like a sheepdog with a thick fringe of hair over his eyes.  He was not particularly enthused about my handiwork, not because it doesn’t look good, but because he likes the hair falling over his eyes.  As I explained to him as I clipped away with the shears, that’s what the hats are for…I can understand one or two layers of vision-impairing accoutrements, but THREE????

J was mortified and kept trying to push the hair back over his eyes.  There was a lot of physical exertion involved, and all of it was unsuccessful.  The only thing that distracted him from his purpose to the point of completely forgetting what was bothering him was dinner.  It was nearly nine o’clock by then.  The day had been so hot that J simply did not want to eat early, and I can’t say that I blame him.

At 10 he went up to his room and promptly fell asleep.  I told myself it would be nice to sleep a little later this morning…and that is why J was sitting on my bed asking to go the pool at six a.m.  OK, the 82 degrees that were evident once one opened a door or window might have had something to do with his desire to go swimming early.  GOING TO THE POOL???  I told him no, way too early to go to the pool.  He curled up next to me and asked again.  I said later.  Sigh.  Seriously, he SIGHED.  Then he sat up and announced, quite happily, GOING TO MAKE COFFEE!!!

So on a morning when I could’ve stayed in bed until seven, I was downstairs supervising J while he made coffee at 6:10 a.m.  The boy is nothing if he isn’t persuasive, and he makes a good cup of coffee.  I then had him work with me through our morning chores, and I insisted on doing it slowly.  I understand that J wants to go to the pool, but I also understand that if he can push me around and rush me through things, he will attempt the same thing at school.  This is not something I want to encourage at all.  Breaking everything down to the smallest detail and making J repeat the words and signs for each step is going a long way to improving his ability to communicate.  I find more spontaneous speech now than I did at the beginning of summer vacation.

There are things that J didn’t know how to say or had trouble saying a mere few weeks ago.  We used to sit at every doctor’s appointment pointing to each finger and each thumb saying FINGER and THUMB.  At first there were no F or TH sounds coming out, and now J actually says FINGER and THUMB quite clearly.  I am also getting more out of him in terms of what he wants, and he’s responding better when I tell him NO or LATER.  J also is improving at answering simple questions and enunciating his words more clearly.  We no longer point to our shirt and say CLOTHES, we now say SHIRT; the same goes for PANTS.  I can now ask him what color his clothes are and he will tell me each item and say/sign the correct color.  Earlier this summer, the word WHITE was not in his vocabulary and just today, while folding laundry, I asked him what color a shirt was and he said and signed WHITE.

I know this is not rocket science, and I know that I haven’t reinvented the wheel or done anything other people haven’t done ten million times before me, but I feel like J has worked hard and achieved something.  I no longer have to say “make your bed” because by the time I finish coffee and come back to the bedrooms to get dressed for the day, J’s bed is made, and he’s ready to take out the things he uses to get ready in the mornings.  Today, for example, I said “let’s do some laundry,” and by the time I came downstairs to the laundry room, J had already washed a load without any supervision.  Same goes for taking out the trash and running the dishwasher.

We started out the year not doing well when counting from 1 to 20, and now -without even realizing it- J’s doing simple math.  While we fold clothes, I set aside the garments that require hangers, and then J has to count how many hangers are needed.  Because he usually grabs a handful from the clothes rack in the laundry room, it is inevitable that he will have either more or less than he needs, and then we do our silly little math that, to many mothers of 17 year-olds, would be one of those “but WHY????” moments…  I don’t care how we get it done and how he practices it…the point for me is that we’re working on something he will put to good use.

Having Dada out of town this week has been…overwhelming.  Exhausting.  Boring.  Tedious.  I have so many things I want to tell him that the next few hours are going to go by very slowly.  At the same time, I feel like what I’m about to relate to him about these days J and I have spent entertaining each other is best left for him to discover.  I want to see how J does something Dada isn’t expecting and watch the wonder spread over my husband’s face because that tickles J’s fancy to no end.

And so, with that prospect of discovery and wonder ahead, the weekend begins…

Ain’t that a crick in the neck…

J woke up with a sore neck.  If he didn’t have the habit of sleeping in a position we refer to as “The Tortoise,” this might be easily prevented.  On any given night, one can go into J’s room and there is his figure, looming in the dark, a big round lump digging his head into the pillows.  It might work for modern dance, it’s not conducive to comfortable sleep.

That the Risperdal might be causing muscle stiffness and cramps doesn’t help.  That J despises the taste of Benadryl (and, really, who doesn’t?) takes away one of the few things I can give him to ease the discomfort.  The only upside of no-Benadryl is that he won’t get hyperactive.  Yes, J is the type of kid who doesn’t get AT ALL sleepy or drowsy or mellow with Benadryl…it’s like giving Miss Pipa catnip!  So I took out one of his alien-looking massagers and we used it on his shoulder and neck, but the relief that comes with it is temporary and I’m sure he’ll come home feeling cranky and contrary.

I didn’t sleep comfortably either.  I woke up in the middle of the night with what I feared was an incipient migraine.  It turned out to be something similar to J’s situation…I was sleeping funny!  And I don’t mean funny ha-ha, I mean twisted in ways that are not normal.  The problem usually is that my husband is tall and long-limbed, and he used to be a swimmer so he will move arms and legs gracefully, but encompassing the whole bed.  The problem last night was that I am no longer used to sleeping alone, and I can’t seem to get comfortable without the snoring that usually ensues once Dada falls asleep.  (Yes, we’re checking for apnea…)

J’s afternoon hours on the deck might be disrupted by a moving truck and a crew of workers who are helping a family move in two doors down from us.  They are parked on the lawn behind the row of townhouses, and this means that J might feel he needs to turn up the volume of his music to drown out the noise.  I am hoping that he will be comfortable enough to not disrupt others, and that the curtain that hides him from view will be sufficient assurance for him of his privacy.  The morning glories have started to climb up the string so he will soon be a little less exposed on the east side, and -between the privacy fence and the green beans- he might be ok on the west.  Our potted plants are exuberant enough that he knows dogs cannot get near him so that’s one big plus right there.

We all miss Dada.  Miss Pipa heard him on the phone last night and started purring so loudly that even he could hear it all the way across four state lines.  She started rolling around on the floor and stretching her paws towards the phone I’d put on the carpet next to her.  It was quite a pathetic display of affection.  One I probably would have joined if there had been enough floor space for me to roll around.  J’s approach to “Dada will be home soon” is rushing me through everything on the board; this is very much in the same spirit of his former belief that if he covers his eyes and he can’t see us, that must mean we can’t see him either.  Yesterday I had to entertain him with an old Jimi Hendrix LP and a vigorous round of that exciting board game (for which we don’t follow the rules and we haven’t even read them) Tetris!!!  In this manner I managed to prevent him from taking his bath and checking the mail at the same time.  I had visions of him running outside dripping wet from his bath, wrapped in a towel and heading towards the mailboxes.  This would have elicited some panic from the neighbors, I’m sure.

In quick succession we cycled through starting a load of laundry, watering the potted plants on all three balconies, putting away the clean dishes, dusting the living run, listening to Hendrix and playing Tetris, doing our Wii run to (among others) The Stones and walking down to the mailboxes to check the mail.  By four o’clock I was ready to collapse, but I do understand that J’s concept of time is not the same as mine.  (Memo to me: never say “after you go to sleep four times, take four showers, Dada will be home.”  It’s some sort of gauntlet thrown at the feet of a person who will go to sleep and take four showers in a row just to make Dada materialize.)

At five P.M. the inevitable could not be prevented any longer and J got his bath.  He powered through that, too.  Then we emptied the dryer and went back outside to play catch with a beach ball.  We even used a hula hoop so that we could throw the ball through it…ten points per successful throw.  We then started putting away all the odds and ends that seem to abandon their prescribed locations during the course of any regular day.  By the time we were done (and I was making him move as slowly as molasses) it was time to start dinner.  J didn’t complain about shrimp, and neither did I…

It was nine P.M. when I finally got him to come back inside.  The kids who have just moved two doors down were playing catch outside, and J was hesitant about coming in because -I suppose- he didn’t want to seem like a scaredy cat.  I pulled down his “privacy curtain” and he then felt better.  Once the fairy lights turned on, he gathered his music and his water bottles, and off to his room he went.

I am guessing J slept uncomfortably because he’s anxious about Dada’s absence.  I am also assuming that when he wakes up on Saturday morning and sees that Dada is home, Dada will get crushed in a bear hug.  I don’t think Dada will mind.  I just hope J doesn’t decide to come checking if the four sleeps and four baths requirement has been fulfilled at four in the morning…

You can go your own way…

Yesterday’s note from the teacher read “we tried to turn left and J threw a hissy fit.  We thought we’d mix things up.  We ended up turning right, and he was happy then.”

You KNOW I read this as soon as he was off the bus.  You KNOW we had a “conversation” on the way home and, to top it off, I changed the route to one he usually dislikes, and I -in no uncertain terms- told J that what the teacher says goes.

I heard a lot of grumbling, but he followed me as I lead him on the alternate route.  When we got home, I once more gave the “you don’t get to choose for the whole class” speech.  He was only repentant enough to elicit an outing to get lunch from TGG.  Yes, ladies and gentlemen, J puppy-eyed his brother and got a burger out of it.

You must be saying “WHAT????” to yourselves right about now, and you’re probably calling me a coward.  Well, from yesterday morning until Saturday morning it’s all about picking battles carefully.  Dada, you see, is out of town for training, and that is stressful enough as is.  I am walking a fine line here, and I need to keep my balance.

I slept with a rather anxious cat on my feet last night.  This, of course, didn’t happen until after TGG had left for work and I’d had to tell J that, unequivocally, it was bedtime and he needed to turn his music OFF and crawl into bed.  I got a big AW out of that from him.  He had turned off his light and TV earlier, and he was “in bed.”  No sooner had I crawled into my bed and tried to tire myself by reading that I heard the distant thumping of Brian Setzer jitterbugging his way through a Christmas song.  I got out of bed and played bad guy.  It was probably 11:00 P.M.

If I can get J to somewhat understand that Dada is away working and he’ll be back this weekend, I do not have such powers over the cat.  Both J and Miss Pipa are still waiting for Miss JuJu to return.  They sit anxiously waiting on the deck, and J is a little more resigned to the empty chair beside him than Miss Pipa is.  Day after day she goes out to sniff around, searching for her former nemesis and now long-lost friend.  That the cat has become our shadow is an understatement; I have found her curled up on the toilet seat when I step out of the shower.  Last night, when she realized that darkness was falling and the tall guy wasn’t home yet, she started pacing around and going to the garage to sniff at the van.  She would come back to the kitchen and do something she seldom does: MEOW!  I tried to explain, in as easy-for-a-cat-to-understand terms as I was capable of, that she’ll be fed, watered and petted while Dada is gone, but that he won’t be home until late, late on Friday night.

J listened to this one-sided conversation as he ate his dinner, and made a rather awkward attempt at playing catch with the cat.  Yes, our cat thinks she’s a dog and she plays catch.  She also sleeps on her back and likes her belly rubbed.  She also runs to the door or window if she hears a suspicious sound and acts like she’s ready to protect us.  I never said this cat was sane, I just said she’s ours.

Some sort of semblance of calm had settled over us when, in what seemed like an out-of-the-blue development to Miss Pipa, TGG started getting ready for work.  J is accustomed to this.  The only thing that threw him off last night was the absence of the garage door’s noise and vibration, but he accepted TGG’s “see you in the morning!” and was relaxed about the prospect of Dada being back on Friday morning and TGG coming back this morning.  Miss Pipa, on the other hand, went into a very accurate imitation of Anthony Quinn’s Andrea in Guns of Navarone.  If she had been wearing a shirt, she’d have torn it off and pounded her bare chest with her tiny paws.  It was THAT melodramatic.  As I spoke to Dada on the phone before going to bed, Miss Pipa hovered over me, sniffing my hair, crawling under the pillows, scratching at closet doors (does she REALLY think he fits in there with all those clothes?,) and bringing one of her “danger mice” for me to toss and toss and toss to entertain her, she settled down at the foot of the bed, and proceeded to meow rather loudly until she felt it was enough.

The alarm clock rang loudly at six a.m. and Miss Pipa leaped towards me as I leapt out of bed.  I made the worst cup of coffee in the history of my world.  I am no longer used to making coffee for one.  At six-thirty I gave Dada his wake-up call and then I finished my coffee before setting about getting J out the door.  Dada’s absence seems to have been forgotten overnight.  J, too, was looking all over the place and went to the garage to check if the van was still there.  After he found the van (not that he could miss its presence at all…it IS big and red!,) he went upstairs and looked for Dada.  I explained, again, that he’ll be back late on Friday, and I showed him the calendar and counted with him.

I am sure I will have to help everyone settle in once more as the day progresses into night.  That I have time to spare is something that nags at me.  I miss Dada tremendously, and the days go by very slowly when he’s not here and yet I seem to get everything done earlier, and then I’m left to mark time until it’s bedtime.  I think it’s because J’s not much of a conversationalist.  This morning we had an awesome time singing our bus-waiting song, and we’ve added stanzas and he actually vocalizes enthusiastically, but the rest of the time our exchanges are brief.  Dada, on the other hand, is quite the chatterbox (even if people think I’m the one who can’t seem to shut up.)

On the way to the bus, I went over the “you do as the teacher says” thing, and I wrote a note (which I read out loud to J) saying that if he needs to stay behind while the other kids walk due to his lack of cooperation, so be it.  J rolled his eyes and said YES.  We’ll see how he fared today when I read the book again.

Here we are…day two of the altered environment.  I have a cat on my feet as I type this.  J is at school and TGG is sleeping.  Is it Friday yet?

A little more spit and polish than I’m capable of…

Jenny McCarthy is a mystery to me.  I know there are those out there who think she’s an awesome advocate, but I just don’t get why.  This latest Playboy cover and spread are not helping me understand her, and I’d like to apologize beforehand for being obtuse about this.  If you are a Jenny McCarthy-ite, please feel free to illuminate me for I am so completely and utterly in the dark that I cannot begin to find my way out.

Let’s start with Ms. McCarthy’s son, Evan.  Ms. McCarthy has claimed, in turn, that her son is autistic and that she has cured him.  The most recent pictures I’ve seen of this boy in the press indicate to me that he is developmentally-disabled.  He is a beautiful boy, and it worries me that he seems to have become a prop for Ms. McCarthy’s tour of self-adulation and self-promotion.

I have had an autistic son for seventeen years now.  It has been thirteen years since we got an initial diagnosis.  Since then I’ve basically been working my ass off to help him.  I am absolutely capable at making myself look put-together, but it takes effort and opportunity.  I’ve yet to see Ms. McCarthy NOT look put-together.  We can argue “well, she’s a celebrity and it’s her job to look good.”  Name ONE THING she has done to earn that celebrity status that obligates her to look so put-together.

Take your time.

And don’t use the word “Playboy” in your train of thought.

Done?

Let’s see: BEFORE her son was diagnosed with autism in 2005, Ms. McCarthy had a mildly successful career as a comedic “actress.”  Her greatest successes came from being a model, namely for Playboy.  I have nothing against this; each person is free to earn their living in the way they best see fit.

Now, SINCE her son’s diagnosis seven years ago…

She’s written four books, and two of them have been about her son’s autism and her role in his recovery.  She has also found the time to be on Oprah to discuss her son’s condition, to defend Andrew Wakefield’s findings and to carry on high-profile affairs with people such as Jim Carrey.  Now she’s posing for Playboy again, and she’s boasting of how her sex life is FANTASTIC and how she’s proud of the classy quality of the pictures.  Ms. McCarthy is very vocal in her disdain for immunization protocols that might be tainted with thimerosal, and she is the face of Generation Rescue.

In recent weeks, Ms. McCarthy has managed to trot out her son’s autism when complaining that her child misses Jim Carrey “almost weekly” since they ended their relationship.  Mr. Carrey, it seems, has kept to himself and publicly criticized that Evan’s privacy was not being respected by Ms. McCarthy in making these comments while speaking, if I’m not mistaken, to Howard Stern on his show.

Ms. McCarthy has also managed to “accidentally” send a text message with her Playboy pictures to her son’s dentist.  Oops!

Ms. McCarthy is now glossily, beautifully, almost immaculately displayed on the cover of Playboy magazine.  She is described as “an ardent anti-vaccine lobbyist.”  She also goes on to say things like “this point in my life has been the most fun, sexual extravaganza. The orgasms are night-and-day better. I feel 100 billion times more sexual, and that comes out in this pictorial.”

These are things you can google and locate on the internet.  I’m not making any of it up.

What you cannot find by googling is this:

  • What I, who have had a bona-fide autistic child for thirteen years, look like on any regular day.
  • What I, who have a seventeen year-old who wears two hats and carries a Slinky everywhere, have to do to make myself look halfway presentable to go on a “date” with my husband.
  • What joy there is when said seventeen year-old goes to sleep and we actually get some quiet, alone time.
  • How quickly we sometimes fall asleep when we get some quiet, alone time.
  • How much respect we feel for our son’s privacy, and how clearly we understand that when we share things about him it’s not something to profit from, but something that might help others learn and from which we might learn something too.
  • How absurd the notion of “curing” a child only to trot out the condition whenever we think it’s going to get us some publicity is.
  • How cycling from “crystal/indigo child” to “autistic child” to “child fixed by chelation” to “I’m not going to stand for this” to “oh, I feel so sexy” takes away her credibility.”

I don’t know Jenny McCarthy.  I have seen how earnest she can be, and I wish I could relate to her in some level, but I can’t.  I am a forty-seven year-old mother of a seventeen year-old child, and I don’t have a job that requires me to work out to look good in Playboy or to make appearances in all sorts of interview shows to prove how much I care.  I don’t date famous people and then discuss how awesome the sex is.  I don’t have a job.

I have a mission.  That mission is quite intense.  That mission requires that I do anything and everything to help my son move forward.  He will not “recover” from his autism.  He is an autistic individual, and as such he is learning to function in the best way possible in a world that is not designed to understand him.  He is an autistic individual who receives the attention, the love, the guidance, the support and the encouragement of people who have ceased to be the stars of their own show and have become enthusiastic supporting players in his show.

I don’t get Jenny McCarthy.  I suspect her son was misdiagnosed; rumor has it that he is more in tune with a Landau-Kleffner diagnosis than an autism diagnosis.  I suspect Ms. McCarthy, rather than choosing the path of making her son the hub of her existence, has turned him into a convenient and handy prop in hers.

I don’t know how any of you do it.  I, quite frankly, don’t know how I do it.  We find bits here and there that make things work, and we bust our butts for those kids that destiny has given us.  I have fifteen tubes of lip balm, I hardly ever remember to put some on.  I have pared down my make-up routine to no more than three minutes, and my exercise is mostly going up and down the stairs.  This page is my shout-out to the world, and what I do with my husband in private is so blissfully ours that I will only say “y-ay us!”

I don’t get Jenny McCarthy.  Perhaps at home she’s a completely different person?  Perhaps at home she does not think of herself and her work?  Perhaps at home, like us, she is preparing materials, making boards, laminating pictures, sewing felt together and attaching Velcro dots to it, taking her kid for walks and using sign language or PECS or words to introduce him to the world, finding activities and tasks that will engage him and help him blossom.  Perhaps at home she’s just like me and she forgets if she brushed her teeth and has to blow into her hand before going to meet the bus.  Perhaps she sits quietly once in a while and wonders where her son will be when she’s no longer around, twenty years from now, an adult with a developmental disability in a world that is not yet equipped to accommodate and understand all the needs of a person like him.

Maybe she’s capable of “turning it off” when she’s around him?  Maybe she will eventually find another way of earning her money so she can be there 100% during the difficult years of adolescence?  We all know it’s not the same for an autistic individual.  Maybe she is capable of seriously considering giving up the limelight to…

Nah…

She’s too busy feeling flattered when she hears “ ‘You’re on my husband’s list.’ I hear that a lot,” and getting ready to host season 2 of Love in the Wild…  It makes a mockery of what the average mother of an autistic kid goes through every day, in my humble opinion.

Marking territory…

We took J to the movies yesterday, and -once more- we were faced with the fact that a) he doesn’t like sharing his popcorn and b) he WILL change seats to prevent anyone (even the woman who carried him around in her womb for the not-inconsiderable 38 weeks until he was pried out) from having a go at his snack.  One moment he was sitting next to me with a lovely bucket of popcorn and the next thing I knew (after reaching out for a handful of kernels two or three times,) J had put distance between us.  Dada then went to buy a bag of popcorn for us, and J charged us the amount of popcorn owed and interest…at a rather hefty rate.  We were left with half a bag of popcorn, and a kid who wouldn’t come near us until all of HIS popcorn was gone.

We saw Brave.  It wasn’t as good as Up, but it was better than Cars and Cars 2.  Best of all, it gave us one of those endings where the girl doesn’t need to have a guy to feel complete.  As with Snow White and The Huntsman, we were left knowing that a decision will be made down the road, but that it’s none of our business.

During the previews, we got to see Katy Perry again.  J was happy and embarrassed, all rolled into one big ball of goofiness.  I get the feeling our calendar will be full of movies he’s going to want to watch as he would sit up a little straighter as the previews started.

The other story of the weekend is, of course, the visiting female.  Saturday, when they returned from their expedition to collect the girl who had taken the bus from the mysterious company, J encountered this new presence and balked ever so slightly.  She is not familiar to him at all.  I had mentioned there would be a visitor, but I didn’t show him a picture as I didn’t have one.  They didn’t attend school at the same time, and I don’t think he ever saw her performing on stage with TGG.  So the new girl was not immediately welcomed into the fold.

In fact…

Every time she was here at the house, J seemed to linger outside and didn’t really warm up to her.  Perhaps there is a bit of jealousy there.  The fact that TGG didn’t sleep at home those nights she was in town did little to make J feel like this person was someone he’s cool with.  He didn’t say anything; he wasn’t rude or emotional; he simply just wasn’t into her at all.

The lovebirds seemed happy.  Oblivious to the rest of the world, but happy.  I would have to say that they are two of the Stooges…I think the one missing is Curly, but this does not stop Moe from continually jabbing his fingers out to poke someone in the eyes.  If anything, we have learned this weekend that children can grow older and become adults, but there is very little that they  understand about how the practical world works when they are “in love.”  In fact, whatever practical knowledge they have is nullified by romance.  (I speak about this with a certain degree of authority having been a young person in love who had to become an adult and surrender some of the butterflies and bubbles that floated around my head.)

So now we are left with one sad young adult (who is acting like the only girl in the world has suddenly left him, although she missed her original flight and they then spent no less than four hours trying to make arrangements for an early-morning flight) and one jolly kid who feels he can now sit on top of the sad young adult and demand some attention.  The grown-ups (the ones with gray hair, wrinkles, dwindling bank accounts and expanding waistlines) are in need of a glass of wine, but it’s too late and it will give them a headache and, sadly, it will probably make them want to pee in the middle of the night (which takes effort these days) or fart loudly (which cannot be controlled as well as in the past, and which makes them laugh which, in turn, makes them realize they have to pee.)

It is a conundrum.  The young people in the household are marking their territory and telling us to back off, while still tugging at us needing reassurance.  The old people in the household would LOVE to cede some territory, but (as poor Michael Corleone stated in the unnecessary The Godfather: Part III) just when we think we’re out, they pull us back in.

No worries.  On the one hand, the bird will fly the nest and make his own, whether his brother likes it or not.  On the other hand, J can afford his own bucket of popcorn, and we can sit in the back row and neck like teenagers.  Hey, he doesn’t want to sit with us and share his kernels, he’ll have to deal with the consequences!

The cheapskate problem-solves…

This morning we took J to the Farmers’ Market, bakery and library for his usual Saturday morning outing.  Rather than carrying the cumbersome board (not the huge wooden one, but rather the foam-board one,) we put to use a little communication board I made after getting inspiration from an e-mail I received.  Different Roads to Learning has a much better-looking item along the same lines, but I needed something NOW and I needed it small enough for J to carry in his pocket to shop at market and order food at restaurants.

This is the link to the Different Roads to Learning website and the product I fashioned our foldable board after:  http://www.difflearn.com/product/Portable_Fabric_Communication_Book/picture_communication

This is what mine looks like:

I don’t think it’s a secret that I am a cheapskate.  Actually, very few parents of special needs kids can afford to not wing-it when possible.  The item in the website is fairly priced and well-made, but at this particular moment in time I cannot afford to order it, and it holds 24 PECS while I needed something a little smaller for J to not get overwhelmed.

When J’s new portable comm board is folded it fits into his pants’ pocket.  It looks like this:

 

It is about 3 inches by 3 inches, and when it has all 8 PECS in it, it’s still not even two inches thick.  Of course, I couldn’t find the ruler this morning because TGG borrowed it yesterday to draw some chalk lines on a wall to he could hang a poster.  This ruler is now in the house’s Black Hole and it will take some doing to get it back (namely, I might have to buy a new one so the other one will turn up…which is the sure-fire way of finding anything one loses in one’s house.)

I used two pencils to give an idea of size, so bear with me:

 

As you can see, PECS are in it…it’s not at all bulky.  🙂

J was very happy when I showed it to him this morning.  He took the PECS down from his wall-board and put them on this little foldable board…and off we went.

I used eight 2 1/2-inch by 2 1/2 inch squares cut out of poster board.  I covered them with cheap felt cut 5 1/2 inches long and 3 1/4 inches wide.  Folded over and sewn on three sides, I then trimmed them down to 3 inches.  I attached them to each other with a simple whipstitch, and then applied a Velcro dot in the middle of each.  The whole thing, from marking the cardboard to ending the project, took an hour…tops.  The cost of the whole thing amounted to less than four dollars, and I will be making two more for J to take to school in August and another for backup.  I like to be prepared for things falling into the Black Hole.

When we came home, J took the PECS off, stored them in their trays and put his new portable board where it can be easily accessed.

The portable board sold in the website is lovely, but I don’t need all 24 PECS at the same time for J to take with him.  It opens to a bigger size, and while carrying the market-basket, J would have a little less control over what he’s doing.  So I’m not suggesting you fashion your own (as we did,) but I am telling you that this little portable thing works and J is very pleased with it.

The other thing I want to tell you today is that we had a minor crisis with TGG yesterday.  He has a friend visiting from out of town (a girl friend…or a girlfriend…we’ve yet to determine the exact qualifier for her,) and -as young people can do when they are intent on one aim rather than on a bigger picture, there were transportation issues, misinformation, calls in the middle of the night…  I have not yet had enough caffeine today.

As it turns out, this young lady (who is not a stranger to us) will be visiting until Monday and neither one of them approached the visit from the standpoint of “it takes planning.”  Our comment to him this morning (when we went to check how the getting from where she was working to where we live went) was that the internet and advertisement give the false impression that travel is easy.  TGG learned the hard way that it’s not as easy as it looks to get from Point A to Point B and book a hotel.  The whole commercial where they are sky-diving and make reservations while in mid-air is a stack of steaming horse crap, he realizes now.

So…off they went a while ago and drove an hour and a half to get this girl at the location where she ended up because there were no direct buses from where she originally traveled to to where we live.  In the time they’ve been gone, J helped sweep all the trash that the wind had pushed into our front porch, and helped gather the trash and take it to the dumpster.  He thoroughly enjoyed his outing this morning so we don’t feel too badly about pushing our movie-theater excursion to tomorrow’s matinee.

It was a long night.  TGG required re-focusing.  (Read, please, TGG required his mother talking to him sternly about reacting like a 21 year-old rather than a ten year-old who has realized his home-made-out-of-an-old-vacuum-cleaner-rocket will not make it to The Moon.)  By the time we finally got word that this young lady was an hour and a half north of here, it was already past one in the morning.  That TGG had the good sense to say “I haven’t slept enough to drive safely over there and I’ll help you find a hotel and book it for you” was a great relief.  They’ve reached the conclusion that the next visit will be planned to the nth degree…”like my mom does.”

Words to live by!!!  Hope you get a good idea out of this foldable board…  I am just relieved J liked it!!!

Waltzing to a jitterbug…

The past three days we’ve dedicated all our efforts to wilting.  This is not voluntary, but it is inevitable.  The temperatures and humidity have conflated to have this effect on us, and we have -obedient humans that we are- given in with very little resistance.  Oh, the A/C is going, but it’s doing its best against a powerful force.  I have been watering the plants when I get up (and the temperature is at 70℉,) and again in the afternoon when the sun is no longer directly attacking the north-east facing side of the house.  Before I go to bed, I water them again.  They look so grateful that it’s hard to complain about how much work this is…

J is unfazed.  He has his patio umbrella, his shady corner on the deck, his many bottles of water and his (result of an inspired moment at the store) battery-powered mister.  The only thing missing is the girl in a bikini bringing him ice and rubbing his feet.  I hope he doesn’t get any ideas.

By nine a.m. we were heading to the pool.  TGG and J were in charge of towels and pool toys.  I was in charge of the camera.  Yes, I am one of those annoying mothers who has pictures of her children doing all sorts of mundane things.  Today I got pictures of TGG soaking his tired body in the pool while J shot at him with a high-powered water gun.  I also managed to take pictures of the duck that came to swim with TGG.  She flew in, rather abruptly, and landed in the water.  After a few seconds of paddling around, she realized we were there…in the water.  We were more amazed than she was, that’s for sure.  We were the ones gaping.  She was dismissive of our presence, and only got out because she probably gets shooed away by other people she runs into.

TGG called out to her in duck-ese.  It must have been an appealing entreaty because our newfound friend turned to look at TGG and approached the edge of the pool.  J just sat on one of the lounge chairs quacking softly to himself, a big smile curling his lips.  TGG continued to speak to the duck, and she jumped back in the water.  I took as many pictures as I could without spooking her, and I kept asking J “can you see this?”  He smiled and said SEE THIS in response.

It was obviously a moment that J was enjoying thoroughly.  With the water gun in his hand, he simply sat there, quietly quacking and smiling, not making a single move to scare our friend away.  Ten minutes she stayed with us, happily swimming around and then preening.  (Do ducks preen?  I know cats preen, but I have to google what it is that ducks do…)  All the while, TGG kept his ducky chatter, and she responded with loud quacks here and there, and with movements of her head and wings.

And then TGG must’ve said something rather offensive.  The duck turned her head and glared at him in much the same way a human girl would have.  She quacked loudly, turned around and, without so much as a goodbye, flew away.

J thought this was highly entertaining.  He observed the interaction between his brother and the duck as he would a cartoon.  When the duck flew away, he felt like he could approach the pool and TGG…and that’s when the water fight (a rather one-sided one, by the by) started.

All TGG could manage was splashing J lightly.  J, with the advantage of his higher perch and his powerful “weapon,” proved to us that his aim is very good.  That TGG over-dramatized every reaction to J’s attacks made things more fun for J.  When you manage to react like James Cagney in the final scene of White Heat every time your baby brother shoots you with a water gun, you’re going to be the coolest guy in the world.  That you’ve conducted a conversation with a duck moments before doesn’t hurt either.

After all that excitement, we came home to get ready to wilt.  The sky is overcast and it makes for even more oppressive humidity.  J is taking it in his stride, though, with Elvis Costello and The Attractions singing The Only Flame in Town while he sits on his cheap plastic chair and holds the battery-operated mister in his hand.  When I went outside to announce that the song was originally in an album called Goodbye Cruel World, he looked at me as if I’d just said the funniest thing in the world, and then instructed me to go back inside and SIT.  I can prove this, I called out, and he closed the door on me.

Tomorrow we go to Farmers’ Market again, and then to the bakery and the library.  J doesn’t know it yet, but he’s going to the movies to watch Brave.  We haven’t told him because we don’t want him to rush through everything else to get to the movie theater all too early.  The art of timing things for him requires a lot of fine-tuning indeed…his internal clock and my energy don’t quite understand each other yet.

It’s all good, though.  We are enjoying this dance of ours, even if it happens at two different speeds and rhythms.  The faster J tries to work through something, the more I slow down.  I am not trying to irritate him, but I do want him to savor certain things a little more.  In a hot and humid climate, lethargy can be a good thing…the slow approach to a vigorous activity, lassitude that encourages daydreaming…an soft-serve ice cream cone from the truck that comes to the neighborhood in the early evening hours and melts over your fingers because it’s hot out and you’re just savoring it.  That is so much better than a popsicle from the freezer, eaten quickly to alleviate the heat of the afternoon.

That’s why I encourage duck-talking, and slowly easing one’s self into the pool…those are the things you remember and make you laugh…

The discreet and judicious return of Water Baby…

The board, like paper, will hold whatever you put on it, and I wasn’t particularly convinced that the PECS for SWIM would fly with J.  When he attended the swimming program with his class, it took weeks for him to actually get into the water.  He did this on the last day.  Before then, my son had dipped his toes into the pool, then his whole feet, then the ankles, the calves…on the last day he decided he was ready, and they couldn’t talk him out of that pool until he was completely satisfied that he’d been in the water.

The story that got back to me from the teacher was that everyone there was so stunned that they just sat and watched him.  I am going to assume they were fascinated by J’s ability to find joy in something as simple as getting into the pool and laughing his head off with delight.  This always comes as a happy surprise, that J can do that with such abandon.

I remember a time when it was impossible to keep J out of the water.  When I was pregnant with J and he got rowdy, kicking hard enough to wake me up in the middle of the night, all I had to do to relax him was sit in the tub.  This was not easy, mind you, because the tub was really a galvanized metal tub where -quite frankly- I was mostly out of the water.  I’ve never seen a baby happier to be in his bath.  When he finally discovered swimming pools (at the age of four, when we moved to CA,) J would drag Dada to the water.  When we went down to the beach, J was the first barreling towards the surf, even before we put our things down on the sand.  So I’d be left setting things up while TGG and Dada went to make sure J didn’t make it all the way to Catalina.

One hot summer day, without warning, J arrived at the beach and started to scream.  When I say he started to scream, I mean to the point where people thought we were abducting him.  That was in 2003, and every attempt to take him to the water from that day until we moved to landlocked New Mexico was futile.  At most, J would get into an inflatable pool we set up in our backyard, but that was it.

To this day, I cannot figure out what happened to turn J off in regards to the ocean, or to swimming pools.  We checked and, no, the soles of his feet were not burned by too-hot sand; there were no jellyfish, and he didn’t get tangled in seaweed.  There were people there, and airplanes flying low with advertisement banners, but that was not an unusual occurrence, and it shouldn’t have made that much of a difference.

Whatever it was that caused his sudden and violent dislike for the beach, we missed taking him.  You cannot imagine how many beautiful pictures we have of J running and laughing at the edge of the water.

So this morning I was worried about introducing the idea of going to the pool.  J jumped at it.  He said POOL quite clearly, and immediately changed into the swimming trunks I bought for him a few weeks ago.  The doctor told us yesterday that, yes, our J has lost some weight.  He’s paring it off slowly, and we’re now having to tighten our drawstrings more than we did before.  To walk down to the pool, J wore an XL t-shirt that didn’t look like The Incredible Hulk might burst out of it at any moment.  The same can be said, thank you very much, about my bathing suit.  Ever the optimist, I had bought a bathing suit last summer and couldn’t persuade J to go to the pool, today I finally put it on, and into the water I went.

Things I discovered today:

  1. J takes his time getting into the water, but it’s not out of fear; he seems to savor the experience.
  2. Spiders swim…or they float appearing to be dead and, when removed with the pool skimmer, they start vigorously moving towards whomever is holding the pole, and the person then screams, runs and, thankfully, no one other than J is there to see her make a fool of herself.
  3. J can’t tell that leaves are not fish when they’re in the water.
  4. J knows he’s taller than I am, but he doesn’t think my feet are touching the bottom of the pool when I stand at the deep end (deep?  Ok, deep to a four-foot tall person…) with my arms up.
  5. J will return to the pool because (even when he was freaking out about the “fish” leaves) he was smiling all the time.
  6. I still fit into that bathing suit, but that might be because I opted for an “older lady” bathing suit.  This, however, continues to be a huge relief to me.

On Friday, when J has no summer program, we will go back to the pool.  It is best, I think, to do it early in the morning when no one else is there.  J is not self-conscious, but people might not understand why he reacts in the way he does.  I don’t want small children running away in a panic and parents either challenging us or whispering about us.

Our appointment with the psych went well.  He was under the impression, and only the Good Lord knows why he would think this, that we would be phasing the med out on our own rather than consulting with him.  J sat there, hatless and happy, for the half-hour our visit lasted.  When we walked out of there, he was still happy, possibly because he knew he doesn’t have to go again until September.  Quite honestly, the rest of us feel happy about that too…

And we’re heading into Thursday.  Summer is officially beginning on this side of the planet…and it will go fast.  It always does…

 

 

Fine-tuning the waiting time…

The distance between our front door and the spot where we wait for the bus seems longer than it is.  J has yet to realize that we will make it down there with plenty of time if we leave here as late at 7:55.  I did my best to slow down his prep-time this morning, but J is so full of enthusiasm for the endeavor of going to school that slightly-slower-than-yesterday seems to him like swimming through mud.  Tomorrow I’m not waking him up until 6:45 so he has those fifteen minutes to complain…then he’ll want his breakfast, clean the kitchen, grab his snack, get ready and we’ll still be out the door too early.

Such is life!

The note the teacher sent said J’s a great listener and a hard worker.  Don’t I know it!!!  I didn’t have the heart to tell her he’s a great listener who then discounts what one wants and goes his own way, and that hard a worker as he is, he’s an even better supervisor.  I’m sure she’ll discover this by next week when the bloom is off the rose and J decides to hijack the summer program.  Never have I seen an autistic individual so capable of rallying people around him…he’s not so much Bluto Blutarsky in Animal House (encouraging others by arguing that the Americans didn’t give up when the Germans bombed Pearl Harbor,) but more like Virgil Hilts in The Great Escape (“I was trying to cut my way through your wire because I want to get out.”)  It is not difficult to imagine J as The Brain, trying to take over the world every time he goes to school.

We waited for the bus in the usual spot, and soon it was cresting the hill.  J emerged with a smile and a much-lighter lunch bag than he’d taken in the morning.  Only half a bottle of water was left, and the note from the teacher.  The humidity has risen over the past few days so we made our way home slowly.  TGG asked J how his day was and then asked him if he was hungry.  BURGER!  OK, TGG said, we need to go get my car.  We walked some more.  FRIES!  We couldn’t help smiling at the suddenness of this request, the enthusiasm behind it.  OK, we’ll go home and get the car, TGG said.  FRENCH FRIES!!!  Yes, TGG added, we’ll get French fries.  BURGER!  Yes, we’ll get a burger and French fries, TGG said with a smile that would have turned into a loud laugh if he hadn’t checked it.  No need to make J think he’s being made fun of when, in fact, we’re just happy to hear him say what he wants with such spontaneity.

All the way up the stairs and down the road, BURGER, FRENCH FRIES, BURGER, FRENCH FRIES, BURGER, FRENCH FRIES, and yes, yes, yes, patiently inserted between his requests.  Once at home, TGG announced he was getting his keys and changing his shirt, so J sat on the dining room bench and held the PECS for BURGER, FRENCH FRIES, SODA, CHEESE, and KETCHUP on his board.  Half an hour later, they returned with their lunches, and J took down BUS and BACKPACK from the board, changed into his grubbies and lunched al fresco.  A more perfect first-day-of-summer-program could not be asked for, and we know it.

On the board this morning is the psychiatrist’s photo.  J removed the picture of the hospital, but left the one for the doctor.  That tells me knows this is the “talking” doctor, and that he would rather have us drive him in through the other street, the one that doesn’t pass the hospital entrance.  I can live with that.  In its own way, it’s a clear communication from a kid who used to kick, scream, grunt and cry when he didn’t want something, but still would not identify the something he didn’t want.

The missing cat is not back.  We know she’s gone, and I try to gently explain to J that she won’t be coming back as we walk around the area where she was last seen.  He looks at me intently as I tell him this.  I wish I could do the same for the other cat.  A cat who used to be so full of vim and vigor that she would run and climb over us to get to a toy is now a languid creature who will curl up in a corner and not move until we do.  I hope it is merely sadness, and that she will soon recover some of her joie de vivre because we are worried about her.  I’m taking time every day to play with her, tossing the “danger mouse” around (ok, it’s just a plain, old, vibrantly colored mouse we got at the store, but she thinks it’s the most amazing thing and she attacks it like it’s really dangerous) and letting her fetch it back to me.  Yes, we have a cat that fetches…we’re convinced that she thinks she’s a dog.  Hopefully, in a week or two, some of the sadness will leave her face; she does look sad, even though cats tend to be inscrutable, even J looks at her and pauses, giving her an awkward pat on the head.

I know I always convey the message that normalcy is not all it’s cracked up to be, but these little disruptions give me pause.  I wonder what the psych will say today about all we have to tell him…I’m sure he’ll nod and uh-huh; he’ll probably look at my black nail polish, J’s goatee, my husband’s clean-shaven face and TGG’s slowly-growing-back-from-shaved-off hair and wonder if we’re being as candid as we should be.  I don’t even want to imagine what would happen if we took the cat and she just languished in a corner, looking glum and depressed.  Perhaps this man thinks he’s hit the jackpot and he can get a paper published in a psychiatric journal…all based on us!

You’d think a psychiatrist would understand the difficult art of fine-tuning…well…EVERYTHING!

Going in the yellow bus????

We made up a song this morning while waiting for the bus.

We’re waiting for the yellow bus,

waiting for the yellow bus,

J’s going off to school 

and he’s riding the yellow bus.

Where is the yellow bus?

Where is the yellow bus?

In this drizzle we stand

waiting for the yellow bus.

What time is it? 

I forgot my watch!

Check the cell phone 

and then tell me the time.

We are here too early.

Sorry I thought you said 8.

I did not you bumbling fool

I said 8:10.

Sorry I guess I’m anxious.

Please don’t use that word

if J hears it he’ll think this is something bad.

And so it went, on and on, becoming less of a rhyming thing as we went along.  Of course, J kept looking at us like we’d lost our minds.  He just wanted the YELLOW BUS.  We know this because, weaving through the song, were the words GOING IN YELLOW BUS pronounced by the youngest of our party.  He had his new lunch bag with him: a small bag of Chex Mix, a small chocolate-coated granola wafer and two bottles of water.  That’s a snack if ever there was one.

When the bus showed up (ahem, at 8:10!,) J was happy to see it and get on it.  I’m pretty sure all the chirpy singing was getting on his nerves, though not as much as if we’d been snarling at each other impatiently.  I can’t stand being too early or at all late, my husband is always one or the other.  It makes for interesting conversations…and songs.

The house is quieter than usual this morning.  Instead of the constantly mewling cat that wanted cream, a fresh can of food, to be petted, to be let out, to be let in…I have the depressed cat that misses the other cat.  No need for a cat whisperer or therapist, though…this too shall pass, I’m hoping.

Last night’s Fathers’ Day dinner was steak (grilled, of course, because man must make fire and harness fire and cook a dead animal on said fire in order to bow to the ancestors and celebrate, well, manhood) and home-made gnocchi.  J saw the gnocchi and almost danced with joy.  He was also excited to see that I’d sauteed some of our home-grown squash, but he refused to try any.  He smiled at them, observed us when we tried them and then, quite pleased with himself, clapped and said he didn’t want any.

The idea of going to school today was appealing to him.  Yesterday we drove out to see the school where the program is taking place, and he seemed happy.  We then took a drive to the bookstore and he walked around the movie section looking for something he doesn’t already own to augment his movie collection.  I think J has slowly come to the realization that he owns just about every movie out there, and that if I say NO to one it’s either because he has it or he’s getting it for Christmas.

Tomorrow we go to the psychiatrist, and our hopes for reducing the med seem a little slimmer now.  The cat’s disappearance has attached to it a certain degree of anxiety that is bothering J.  Miss Pipa, the remaining feline, is haunting us with her Moaning Myrtle attitude.  Furthermore, the children who came up to the patio to announce the Simon Legree-like behavior that seems to have preceded the cat’s disappearance did very little to keep J calm.  People of all ages tend to think that because J doesn’t talk, he is unaware of and incapable of understanding what is said to him and around him.

As I explained to the lady from the office and the construction foreman, at the end of the day, it’s J that worries me most.  When a deputation of children shows up and excitedly announces that a cat has been basically taken by force and she never ever is seen again, J will take that in and it will sit on the back of his mind, comfortably taking up space and stretching until we end up with the classic silent-film scenario of a female in distress tied to the railroad tracks while the train barrels towards her.  My hopes of eventually having J be THE person to take the trash out, check the mailbox and walk halfway home from the bus by himself are totally dashed for now.  It is one of those unfortunate coincidences that one wishes would just NOT have happened.

We talked about this last night.  The grown-up committee discussed it and, after careful consideration, determined that the timing might be off for the med thing.  Maybe the Universe is trying to tell us something?  Rather than sending us a Black Spot, it’s sent us an unexpected occurrence to remind us that being overly-ambitious is not always wise.  You have made a lot of progress, the Universe seems to be saying, why mess it with it now?   At the same time, we don’t want to be scaredy-cats (no pun intended,) but we can’t help taking a step back and thinking about the butterfly effect of this incident.  If we take the med off at this moment, and there’s an undercurrent of anxiety in our home (even if it’s just Miss Pipa who outwardly expresses it,) aren’t we tempting fate?

Two years ago, we couldn’t eat out.  Two years ago, there were places that we couldn’t get out of the car.  Two years ago, the likelihood was high that J would want to stay in the car and one of us would have to do the grocery shopping.  Maybe, just maybe, this is not the right time to attempt a change in dosage.  Consider, as we have, that summer school is populated with people he doesn’t really know, and that it’s at a different school.  Consider that he’s riding the bus in the morning and afternoon, and that Dada is going away on a business trip next week.  Consider that the board is bigger, better and has more stuff on it.  Consider that maybe we should wait a few weeks until all this blows over.

The Universe is speaking…I think we need to listen.  Any thoughts?????