Today is the first day of the rest of your life…

Well, it has finally arrived.

It’s May 18th.

First day of no-school forever.

FOREVER!

How ready are we?  What option do we have but to BE ready?

We have done all we can do, and we will take it from here with a grain of salt.  The BUS and BACKPACK PECS are put away.  The new order of things will slowly take root.

J is ready, I think.  He knows what’s up, and maybe he’ll be in denial for a while, but we’ll figure out how to help him adjust.

It isn’t like we haven’t experienced a lot of change over the past five years.  We were a four-boxing glove family.  We were a Rasta hat and scrum cap family.  We were a Risperdal family.  We were a Slinky family.  We’ve reeled in the bells and whistles and are left with “sleep with them” boxing gloves, “wear to bed” Rasta hat and scrum cap.  No Risperdal.  Slinky…well…Slinky’s a “person” to J, and I’m sure he’d quote Lilo and Stitch if we tried to ditch Slinky.  Slinky is part of J’s ohana

We’ve made progress.  Little by little we have reclaimed some semblance of “control,” and we are pretty firmly set on the parts where our lives function very well.  But change is inevitable.  We cannot control change unless we opt for absolute stagnation.  And stagnation is not something we encourage.  School had to end.  J’s teacher wanted to stretch it out a little, but I knew if we fell into that trap we would just be going against all our preparation for the transition.  All that “it’s until the 17th!” and the countdown would have been for nothing, and J would be confused.  So I said no…let’s stick to the plan.  Change is necessary.

Change, however, seldom comes in singles.  Another relocation is in the cards for us.  Health issues that, thankfully, have been discovered very early in the game are on the calendar.  So transition is the name of the game, and change is the card we drew from the pile…

We’re old pros at this, so we’ll do what has to be done.

J left yesterday morning with his THANK YOUS and his little gifts for aides and teachers.  He had a good day except for a brief portion during which Voldemort (the one person who gives him grief) made his life miserable.  It passed.  It was too important a day to let anxiety linger, and the situation was managed.

At 3 PM I sat on my usual spot, and waited for the bus.  The same lady that usually parks in the middle of the road (blocking the bus driver’s view and thus preventing J from walking independently from bus to mother) parked in her usual spot.  Here I was, one last time, trying to reinforce “you can walk without me,” and there she was doing the absolute opposite for her neuro-typical child.  Here’s the kicker: she drives to the school, makes sure he gets in the bus, and then dashes home to wait for him.  He’s five.  I get the concern, but…this was the one last time to reinforce the “walk towards me…I’m here…you’ve got this!”  That I had to navigate around her car and (several times in the past) cars pulling into the neighborhood’s shared driveway nearly hit me is inconsequential.  But I digress…

Change is in the air.  OK…change is cramping our shoulders, making us frown, giving us pause.  We know as we get older this process of perpetual readjustment and fine-tuning will be more difficult, but we understand that the world we live in is one of constant change.  Gone are the days when people were born, grew up and died in the same town.  We are so far from “home” that it never ceases to amaze us.  Oh, the times we’ve stopped and said “HOW did we get HERE???”  And now it seems we’re on the way to doing it all over again.  The only plus-side we’ve come up with so far is that we no longer have to agonize about school district suitability, but services, etc. are still important.

Last week our main concern was today, and now we’ve added several more things to the list.  But J is happy.  J is taking it all in stride.  J will, like water, fall into whatever container we pour him in, and that’s a good thing.  We will choose a good container; we will, as always, make him a priority.

So here is today…a few hours ago it was just tomorrow. And J is happy with the way this particular morning is going.  Dreary, yes, but a good morning nonetheless.  It is raining and it is gloomy, but we are both in our pajamas (don’t judge) and Dada’s off to work.

Our plan today is simple: he’s already  made his breakfast (with less than 45% guidance and assistance from me,) and then we’re going to do our chores, exercise, and learn the fine balance of not getting into each other’s hair on a more permanent basis.  School breaks, in hindsight, look like piece of cake now…but we’ll learn…we’re going to figure this “we’re all grown-ups sharing a home and with very little to intervene with our day-to-day routine thing.”

The rest will fall into place, right?  Eventually?  With a modicum of stress?

As with birthdays (after a certain age or stage in life) today we don’t feel at all different from yesterday.  That might be a good thing.  Maybe it wasn’t meant to be a monumental shift.  Maybe it’s just like going to the optometrist and finding that one lens makes the images crisper…

Yeah…

I think that’s it…

Let’s go with that…and let’s put the “comfort item” snow boots away…

shall we?

Little pitchers and all that…

As we know, the Thursday before ESY started J had to go to Urgent Care because his thumb hurt.  The X-ray indicated there wasn’t a fracture, but there was a sprain of some sort.  The doctor fitted him with a thumb immobilizer that has become J’s best friend and confidant.  Add to this his penchant for wearing band-aids for no good reason other than to remind himself that he’s alive and breathing and you get a pretty alarming picture.

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We’ve had the same bus driver for 80% of the time J’s been attending school here in WV.  By now, four years and multiple bandaids later, she should know that our son has a flair for the dramatic.  This is the kid who will buy bandages EVERY SINGLE TIME we go shopping.  I’ve told Dada to invest in Johnson & Johnson since we’re helping keep the company going strong.

Anyone here have a child in the Spectrum who isn’t comforted by deep pressure?  Compression garments?  Weighted blankets?  Pillows piled on top of his/her body?  Cocooning?  Individuals in the Spectrum feel comforted by these things, and J is no different.  That he takes it to the point of looking like a Civil War walking wounded is an entirely different matter.

If you’ve never seen J and you witness this “look” of his, you’ll wonder what is wrong.  If you ask, I will gladly explain the whole thing to you, especially if you’re uninitiated in the intricacies of Autism.  I will even, if you feel that my explanation is insufficient, invite you to call the proper authorities so they can do an investigation.  I KNOW what it can look like to those who don’t know what J is like.

There’s another little quirk of J’s that poses a problem: echolalia.  J will repeat the very last thing you said, and this can be considered leading the witness.  If you, as an adult who should know he’s in the Spectrum and has trouble communicating, ask “are you hurt?,” you will get HURT as a response.  “Again?”  will get AGAIN.  If you ask him “was it a rampaging elephant?” J will respond with ELEPHANT.  I don’t mind people asking him, showing him pictures, asking him to point as long as they understand that J doesn’t have the complete ability to answer spontaneously 100% of the time, and that you are probably leading him to the answer you want.  That is why, when we go shopping, and he points to a general display of items, I tell him FIND THE ONE YOU WANT.  I step back, and I wait patiently until he gets that he is the one who has to choose.

Asking a question about whether he is hurt again in front of a busload of special needs students who might go home and say “J is hurt again” is not a very good idea.  Some kids will repeat what they hear.  Other kids will embroider and filigree what they hear.  It might not happen, but it also MIGHT happen.  It’s a possibility…

Every single person that works with J is welcome in our home.  We actually make a specific invitation to come and see how J lives, what our set-up and our system is at home, what our expectations are, and how he navigates it all.  We remain in constant contact with staff from school, and we try to make sure they understand what we’re aiming for here.  Whether they take us up on it or not is entirely up to them, but we wouldn’t ask if we didn’t mean “come over and see what we do.”

I love when people are genuinely concerned about my son’s well-being because it tells me they care, and they will tell me if something seems fishy.  I don’t mind people asking me questions, and wanting to make sure that he is being treated properly and respectfully.  What I do mind is when people call out, from inside the bus, asking J if he is HURT AGAIN!!!!???? in front of a busload of impressionable kids who cannot process the situation with the clarity of their neurotypical peers.  None of these kids can ask J “hey, dude…are you ok?  Is something happening at home?” and then -as concerned friends- take it to a grown-up for follow-up.  These kids can only repeat it at home in a way that their parents won’t be able to interpret based on their knowledge of us, and of J.

Discipline doesn’t mean mistreatment, and we don’t take advantage of J’s inability to communicate when we scold him.  We explain why we’re upset, and we do our best to get him to understand when he’s done something inappropriate, dangerous, risky, rude, and so on and so forth.  Our biggest problem, perhaps, is that we work gradually to wean him off the comfort items he cherishes and we respect what they mean to him.  I always let teachers, staff know when he’s really hurt, and how serious it is; I always inform the teacher if he is sick, and what treatment he is undergoing.  I don’t do this because I am afraid of misunderstandings but rather because J cannot explain for himself how he’s feeling or why, and what’s being done to help him.

I am J’s voice, and I will speak for him when I have to, but I will also allow others to question what I say because I have nothing to hide.  Echolalia is a dangerous thing because not everyone understands how to ask questions of a person who resorts to it rather than to spontaneous speech, and J’s privacy should be respected even in cases of extreme concern for his safety.  A neurotypical child questioned about his/her well-being and safety will not always be upfront about the situation, especially when it’s done in a public and potentially (to them) embarrassing manner.  Asking the child/adolescent/adult in a more private setting, establishing an environment of trust and safety will create a better opportunity for sincerity and confidence.

J’s fine.  He’s healthy.  His thumb has healed and we’re working with the timer so he leaves his beloved thumb immobilizer off for short periods of time throughout the day, BUT he does feel his hand needs to be controlled.  I don’t know why…maybe it’s hereditary OCD, or maybe it’s that splash of bipolar disorder that dwells in my mother’s genes as passed down through the generations.  I have to respect what he thinks that brace is doing to protect him from himself…and I will work on alleviating his concerns in any way I can.  If, for the time being, J thinks the brace is necessary, then the brace is necessary.  It may very well be that it goes the way of the boxing gloves, the Rasta hats, the whole milligram, the three-quarters of a milligram, the half of a milligram of med…or maybe, like Slinky, it will stay as part of his everyday needs and supports.

I can live with that.  I accept that it’s the way it is for now and might be for a long, long time…  But ask me, please.  Don’t assume and unwittingly spread that J might be in danger…  Ask me.  That’s what I’m here for…

If this is Spring Break, cold temperatures must be returning…change is in the air.

Seventeen degrees this morning.  The high should (SHOULD being the operative word) reach 39; I’m not holding my breath for that because the other day we were supposed to have a similar pattern and it didn’t pan out.  Yesterday morning, as we packed the recyclables into the car, we realized that a) it was snowing, b) the wind was blowing with a certain unexpected chill in it, and c) it was downright you-need-gloves-a-scarf-a-hat-are-you-wearing-only-a-sweater cold.  Recyclables dispensed with, we rushed home to make tea, and stayed indoors the rest of the day until J went to the gym with TGG.

It is the Monday of Spring Break, and we have our appointment with the psychiatrist this afternoon.  After sitting through his first IEP ever (I forgot to check off the box that said he didn’t have to be there,) J was none the worse for wear.  He needed a timer to remind him that this meeting had a finite time allotted, but he actually did very well for the hour and fifteen minutes it lasted.  He did this, mind you, without his hats.

When Dada walked into the conference room J had a brief moment of anxiety.  I’m sure he wondered if he was in trouble (parents and administrators and teachers in a confined space have that vibe about them,) or if we were trying to build a smoke screen to disguise a trip to the doctor.  Once we clarified that we were there to talk “about school,” J relaxed with the help of his iTunes and headphones.  He wasn’t so distracted from our purpose that he didn’t react when the Speech Pathologist said “sometimes I wonder if he’s just giving me the run-around.”  This elicited a look that clearly stated “who???  Me???” and made everyone in the room laugh.

We finished our meeting just in the nick of time, and managed to beat the traffic of school buses, parents and students with vehicles trying to exit the parking lot at the same time on a Friday afternoon.  This was shortly before 2:25 in the afternoon, and we didn’t actually make it back home until almost 5:15.  By the time we sat down to eat the pizzas we grabbed on the way home (I wore heels and grown-up clothes, people, and sat through a meeting and did the shopping…I wasn’t going to cook,) we realized that J had been without hats since before one o’clock, and that he wasn’t going to put them on until he was done with his dinner.

That, my friends, is what I’m taking to the psychiatrist this afternoon.  J can adapt to more situations now with greater ease than he ever had before.  J is very self-aware, and requests his band-aids to remind himself of what hitting his head can do.  J has accepted changes to his diet with a positive attitude.  J doesn’t fret about things that would have pushed him over the edge because they don’t fall into a pattern that is comfortable for him.  J, in fact, has known since Saturday morning (when we updated his schedule for the week to reflect Spring Break) that he is going to see the psychiatrist today; the only hesitation he has shown has been brief, and easily managed by reminding him that “this is the talking doctor; they will check your blood pressure and your weight, and then we’ll just talk for a bit and come home.”  With that, and just a few repetitions of it, he has accepted that it’s part of today’s schedule.

I think we’re ready to cut another .25 mg from his daily dose of medication.  Dada agrees.  J’s teacher, who deals with his ups and downs in a totally different environment, agrees with us.  In spite of the SIB J displayed at different times through winter, we are fairly sure that he has more control of his emotions now, that he is starting to understand that he CAN exert restraint, even if he doesn’t succeed 100% of the time.  In support of J’s newfound but still iffy self-control, I’m not successful 100% of the time either.

We don’t expect miracles.  I think, if we’re lucky, we experience a dramatic development that results from what at times appears to be pointless efforts on everyone’s part.  We don’t think things are sinking in, or that they won’t take root in J’s mind, but then they do.  It’s not that we don’t believe J is capable of learning the many layers of things we try to teach him, but rather that we don’t know for sure that we’re going about it in the right way.  Learning by rote CAN be difficult, especially when there is much to learn; actually comprehending what is being repeated almost to satiety is even more difficult.  There has to be, as it were, a light switch that goes off in J’s head, when it all makes sense and he can connect all the many, widely scattered dots that we’re drawing for him.

This weekend we looked at rocking chairs for the patio.  J liked one made of teak that we saw at the big box store where we are members.  It is a nice, sturdy chair, and he was comfortable and happy in it; we will get it for him in a couple of weeks, when we’re a little more certain (weather-wise) that he will enjoy sitting outside.  We also found a nice little indoor/outdoor rug for his patio area, and this week we will be working on starting seeds for the garden.  While the weather may not cooperate, we’re not letting this stop us from planning for summer.

Little by little we make progress.  Yes, once in a while, we take a step back, or we stop, or take a bumpy shortcut, but we’re making progress.  A school principal once balked at our statement that we knew J would never be a rocket scientist, taking this as a statement of our lack of faith in J’s intelligence.  We have very little doubt that J is very intelligent, or that he has trouble accessing the stores of knowledge he possesses through traditional means.  Our main concern, because J has challenges that make his progress a little more difficult than one would want, is that he will make progress…period.  So while J may never be a rocket scientist, we do work on making him as independently capable in as many aspects of his life as we can.  Like the transition from Winter to Spring, this is taking time, and a rather circuitous route, but we’ll get there…wherever “there” is…eventually…

Now to make this new med reduction work…

The brownies with the green stuff in them…no, not THAT green stuff!

J and I made brownies yesterday, and we did it before Dada and TGG got home so we could surprise them with a) there’s dessert!, and b) what’s in the dessert.  TGG walked in first, and eyed the snack with suspicion, but that was only because they didn’t look like brownies made from a mix, and the kitchen was clean as a whistle.  He ate a brownie, liked the texture, said they were good, and then asked “what’s wrong with them?”  I told him.  He was stunned.  He ate another one.  “Are you SURE?”  J giggled, and ate one…and then another.

Everyone was sworn to secrecy.

Dada walked in next.  Long day at work.  Ready for a rest.  Ready for a glass of wine with dinner.  Ready for a brownie.  Yum…and another one.  “These are good?  From scratch?”  Yes, and J helped make them.  A giggle rose from the stairwell, and J came up to greet Dada, and take another brownie.  I cut them small…no fear, people, these were bite-sized brownies.

“What’s so funny?,” Dada asked.  TGG sat on the steps and asked him “good?”  “Yeah, why????”  Dada then proceeded to praise the chocolate-y-ness and fudge-like qualities of the brownies.  J giggled again…

Spinach.  Spinach and carrots.  No milk.  Only egg whites.  Lots of spinach and carrots.  Dada stop mid-bite…”really?”  Yup.  J danced down the stairs, giggling all the way.

Seriously?  Seriously.  The only hint that this might be laden with vegetables is a slight aroma of something very organic when you open the plastic container where we stored them.  “Is that what soylent green smells like?,” TGG asked.  No, I said, taking in the scent; “soylent green is people, right?  This doesn’t smell like people, does it?”  Well, TGG said, maybe the people in this house will smell like that later; have we figured out how much gas these will give us?

I admit pondering this is justifiable.  With vegetables and fruit (some of these previously non-participant in our kitchen) turning up in every single meal, digestive processes have become a topic of conversation.  The most frequent conversation opener is “oh, my GOD!  Did you hear that?????”  Worse yet is when you don’t hear it; if you suddenly feel the urge to run out of the room because some silent passage of gas has taken place, there is no way to be funny about it in situ as self-preservation is an instinct that kicks in (hopefully) immediately.

We survived the brownies, and some of us (I’m not naming names, but the distinct clinking of spoon against bowl as I type this should tell you it’s not me…I don’t type with one hand…) have taken to having these with strawberry ice cream and a glass of milk.  My husband is having spinach and carrots for dessert.  Wonders never cease.

The brownie project was a little pick-me-up for my friend J.  He was still upset about the incident on Monday, and we’d spent the whole morning putting bookcases together, reorganizing the garage, working on shapes and  colors…I figured we’d go into the kitchen and prepare something while I talked to him about how things are never as grim as we think they are.  This morning he requested a band-aid for his forehead before he left for school.

I know he’s trying, and it means the world to me.  I also know his teacher is keeping a close eye on what develops over there.  Today, she told me, J wanted something and when the ST told him he had to wait, he looked at her and motioned as if to ask “should I hit myself?”  The ST simply kept walking, J shrugged his shoulders and the situation was diffused.  Of course, it has to be taken into consideration that J actually LIKES the ST, and that she has had her trial by fire when they first started working together; now she knows what to do when these things happen. If J can hang in there and control his anxiety for the next few weeks, maybe we can come up with a viable solution when his IEP meeting rolls around.  Finding a way to re-assign him to another aide is not viable, but perhaps finding a way to re-direct him to tasks that he can work on more independently is something we can figure out.

We’re down to 21 days to spring, and 24 days to J’s next appointment with the psych.  In spite of this animosity he feels against the aide (because I can’t just put the onus on Tiffany, can I?,) I still believe we can reduce the med another quarter-milligram.  The fact that he asks for band-aids to remind himself that he hits and it hurts, and the fact that he will be redirected by just about any other person he works with tells me we can do this.  Is it going to be easy???  No, probably not, but I was worried about the first reduction, and about overhauling his diet, and so forth…things have been a lot less dramatic than I (who have a penchant for pessimism) had ever imagined.

We keep plugging away at everything that pops up.  We do our best to keep a healthy sense of humor, and we gently jab at each other with love and advice.  Yesterday, for example, TGG sent me a picture of his horoscope with a message that read: I think I’ll follow this advice.  The horoscope said something along the lines of “news you recently received have caused you great concern, but agonizing about it won’t help.”  When I didn’t reply to his message (because, as usual, I was staring at the screen in that sort of disbelief that mothers know all too well,) TGG called and the same voice that announces Kierkegaard’s calls announced his.  “I am legally changing my name to Horoscope,” I said.  Huh?, TGG said, sounding confused.  “You are going to heed your horoscope when it tells you the same exact thing I’ve been telling you ALL MONTH?  I’m changing my name to Horoscope.”  He made a derisory attempt at laughing, and later admitted that, yes, I’ve been sounding like a broken record all month…

“Here…have another brownie with green stuff in it,” I said, “it’s good for you.”  Yes, Horoscope, he said as he climbed the stairs.  I called out to him, quoting my beloved Erma Bombeck: just wait ’til you have children of your own!!!!!  Yes, Horoscope.  I’ll tell them “grandma used to put green stuff in our brownies…and I’ll WINK!  One look at pictures of J walking around with boxing gloves, hats, Slinky…oh, they’ll believe it!

 

Tuesday, Tuesday…

A thin layer of snow has fallen since earlier this morning.  Rather than the heavy blanket we’ve often felt being dropped on us, we are currently like sweet Mallorca rolls, dusted liberally with confectioner’s sugar.  It’s not at all bad; it doesn’t feel like Winter is throwing a tantrum and needs a time-out.  It feels like Winter is reminding us of its presence, but it’s tired, and this is just a cameo appearance.  For a winter-weary population, this feels like a nuisance that we have to humor (Uncle Winter had too much to drink again, and we’re listening to the abridged version of how awesome he was in high school.)

Cause for concern: we met with very little resistance from J when it was announced that he had to stay home today.  The cold is pesky, and he is congested, and complains of a scratchy throat.  He looks tired, but not so much so that one would say he needs to sleep.  Maybe he is just weary from all the confrontation he feels compelled to by this one person who makes him uncomfortable at school.  He knows, of course, that hitting himself is wrong, wrong, wrong, but he also seems to be inclined to think this is the only option for him in that situation.

We are in slippery-slope territory with this matter.  I’ve tried to get around it, and I can’t seem to find a reasonable solution that will help J more than minimally, and -trust me- I KNOW that J is responsible for his own emotional well-being and has to learn to manage himself when he’s put in close proximity to someone who doesn’t rub him the right way.  At the same time, when your kid (ok, your grown-up kid) comes home with an abrasion the size of a silver dollar on his forehead every time they have to work with one particular individual, you have to take a step back and consider the possibilities.

Over time, the skin on J’s forehead has become rather fragile.  If you look carefully at the area of his hairline where he has the habit of hitting himself, there are faded scars, and the skin is thin and shiny.  Doing damage there is not difficult.  J knows this; he is aware that hitting himself is upsetting for everyone around him, but (emotionally) he still feels compelled to do it when he is extremely upset.  There was a time when J would hit himself if he didn’t get his way; this is no longer the case.  J now hits himself when he has reached a point where nothing else he has done has yielded the desired results.  This is how we know that this particular person distresses him more than he can handle.  It is a quandary, and we have to work through it, don’t we?

Yesterday seems to have been a pretty rough day.  J came home distressed, and apologetic about having hit himself.  The note in the book (written by the individual with whom he has issues) shed no light on what had happened.  We later found out that the situation was played down in the note.  When we realized that J wasn’t feeling well it was because we walked into his TV room and found him teary-eyed, wanting a hug, and complaining of a scratchy throat, a cold, dry lips, dry eyes, you name it.  This was more of an emotional malaise than a physical one, and it was upsetting enough to him to sit through a rather long visit to the Urgent Care.

I’m not trying to read into this more than there is, but I have to read what there is…and the first incontrovertible fact is she has been present for all the other major incidents J has experienced this school year.  As Sherlock Holmes says: “eliminate all other factors, and the one which remains must be the truth.”  We’ve eliminated regression, lighting, noise level, petit mal seizures, attention-seeking, skin rashes, a nervous tick, that it’s part of his “routine,” and all that’s left is (let’s call her) Tiffany.  Other students have had, over time, similar issues with Tiffany.  I don’t know Tiffany, but I get the feeling there’s something about her that the kids sense doesn’t quite empathize with them.

Are teachers and aides supposed to empathize with the Special Education population they serve?  Yes, I think empathy is the right feeling as opposed to sympathy.  No person can truly understand how a developmentally-disabled or handicapped individual feels unless they have been in the same exact situation.  I, for example, can try to understand how J feels, but only from the standpoint of someone who observes him closely, has lived with him his whole life, and actually puts effort into comprehending J as an individual, and his Autism as a significant factor in how he behaves, thinks, feels, and so forth.  A classroom setting isn’t the most conducive to this kind of interaction, and I don’t think we should expect any more than is humanly possible when you are trying to empathize with a dozen students with varying degrees of difficulty in different areas.  I know this, and I want to be fair to J and to this person, but the only one I have any influence over is J.

There was a time when people chose fields of endeavor based on vocation, ability, skill.  Now, because there are so many of us populating a vast world with dwindling opportunities to shine according to our inclination, we tend to choose because a certain occupation has opportunities galore, is about to boom, pays well, requires little training.  I come from a family of teachers; my aunt was a much loved History teacher; my grandmother was an extremely efficient Spanish professor; my uncle was amazing at teaching future teachers; my other uncle taught Shop, and I never saw him saw a straight line in his life so I wonder what he was like molding future carpenters.  I tried to be a teacher.  I failed miserably.  I loved the subject I was teaching (English,) but I hated the rest of the undertaking; I had no patience for the whole thing.  It figures that I would find myself trying to teach the most basic skills to one of the least malleable individuals I’ve ever come across, and that patience is the daily bread I must have an endless store of…

Does Tiffany like her job?  Does Tiffany feel overwhelmed by what she has to do?  Does Tiffany even understand what she’s supposed to be doing, and how the mind she’s clashing with day after day after miserable day works?  She’s done this job for a long time, but that doesn’t really answer any of those questions, does it?  Albert Einstein, whose intellect I wouldn’t dare to say I understand one bit, is quoted as saying “Insanity: doing the same thing over and over again and expecting different results.”  I don’t know if this applies to Tiffany, or if it applies to J.  It could even apply to me, or Dada.  Some step in the process is being repeated, and it’s  yielding the same exact result over and over again.  The question remaining is: how do we deal with that particular step without anyone being the worse for wear?

For the time being, I will continue to put band-aids on J’s forehead to remind him of how it hurts when he hits himself.  I will continue to remind him that there are better ways to deal with this kind of stress.  I will count with him the days remaining until the end of the school year, and I will see what can be done to alleviate this situation without ruining someone’s career, or impacting their job security.

I look at very delicate skin, and blood pooling under it, and I wonder how much more damage J can do until it’s too much.  That’s his brain getting jostled, jarred and shaken under there, and we have very thick skulls (literal and figurative,) but there’s a limit to what those thick skulls can do to protect what’s underneath.  I don’t want us to slowly inch back to where J’s ONLY resource was SIB.  I flatly refuse to go back there, but I have to figure out which path will lead us to a healthy and reasonable resolution.

If Vivaldi wrote sublime music to echo the emotions elicited by weather and seasons, maybe all this confectioner’s sugar will help…or, perhaps, a bowl of ice cream would be better?

 

 

 

Stuck at 29…

Throw the number 3 in front of any other number and J is stuck.  We are now breezing from 1 to 29…reach 30 and a blank look takes over.  I’ve tried working on enunciation, counting, writing, looking at the number for periods of time…nothing…30 is not happening for the time being.

I’m taking the tack that 29 is a big accomplishment nonetheless, so I’m going to be patient with thirty.  If it’s the “th” sound that’s tripping J up, we can find other ways to work on it: Thursday (he likes that one,) three and thirteen (he knows those quite well,) through and thing (those are found in many of his storybooks,) thimble (in his flashcards and my sewing box,) and thank you (which gets over used around here.)  If it’s the number he doesn’t like, I’ll have to find a way to make it worth his while since we can’t really skip every number in the 30 to 39 range simply because J doesn’t want to deal with them.

Today is a no-school day, and we are possibly getting snow tonight.  That might mean a snow-delay in the morning.  I’m preparing for that.  I’ve already made a PECS card for Snow Day, and am working on a 2-hour Delay one.  Last night, knowing that there was no school on his schedule board, J’s parting word as he climbed into bed was COFFEE.  He was as good as his offer…at six a.m. (thankfully not a moment sooner,) he stood in the hallway and announced he was heading to the kitchen to make the magic brew that means the day is starting.

Since there’s no rush today, I didn’t mind that he went to fill his snack box, but didn’t divvy up in serving sizes, and immediately wanted to get his movies and migrate to his TV room.  Eventually, as we took our first sip of coffee, J returned and asked for his box to be arranged so we gave him the green light to do it without any intervention from us.  This was an exercise in compromise on his part: most of the bigger-serving containers have been either left in someone’s break room, someone else’s house or are in use for leftovers, so J had to accept smaller containers and gauge exactly how much he could put into them without getting a cleared throat from across the room.  We never tell him it’s too much, we simply clear our throats and say “are you sure, sir, that the container will snap shut without breaking in the process?”  This morning J showed that he can arrange farfalle into a container in such a way that he only has to take out about ten of them to make it close properly.  This morning he also had to accept that there are only so many ways one can arrange mini-donuts in a container that will hold no more than four…and that that’s all he gets because that’s all that fits.  He didn’t ask for more containers, which is what we worried about when we simply sat and waited while sipping coffee.

For all his discontentment at school, we find that J is quite well-balanced at home.  Last night, for example, he impressed us quite a bit when he asked for Slinky.  Didn’t he just have Slinky in his hand, Dada asked.  I checked his TV room, where we’d been working on some crafts and giggling up a storm.  While working, I could’ve sworn that Slinky was parked on the Slinky Block that we’ve placed on J’s work table.  We moved the bean bag, the pillows, the blankets, searched every nook and cranny, checked the living room, the stairs in case he’d dropped it, his bedroom…all the while J waited patiently at the kitchen counter, holding his Daily Migration Basket with both hands and, from time to time, saying Slinky as if calling out to his friend.  We were baffled.  We couldn’t find Slinky and we had no idea where “he” could have gone to…and then we heard the clinking sound, and J’s happy cooing.  Slinky had spent the last few hours forgotten on the half-bath’s counter.  J had left it there when I sent him to wash his hands so he could help with the gnocchi for last night’s dinner.

And, there you have another little nugget of J-marvelousness: last night’s dinner.  At around 1 PM I asked J to help me season the whole chicken we were roasting last night.  With a great deal of alacrity, J put on his purple disposable gloves, grabbed and handful of the home-made seasoning and proceeded to lather it on the chicken.  He went into every cavity, under the skin, vigorously rubbing the concoction I’d mixed for the bird.  And he did it with such energy and enthusiasm that we had what we now call J’s Broken-Back Roasted Chicken.  The bird was able to lay flat even before I opted for butterflying it on account of its rickety condition.  I heard the snap, and I thought to myself “was that my knee???  Oh, Lord…I need to take my glucosamine!!!”  J held the chicken aloft, it’s spine pointing in three different directions, but thoroughly seasoned nonetheless.  It was tasty, and it cooked to perfection.  J was very proud of his contribution to the meal.

So we’ve been up since early, and we have a list of chores to complete throughout the day.  Later, before it gets colder or starts snowing, we will walk Queequeg to the trash bins and clear the garbage bags from the garage.  We’ll wash some clothes.  We’ll work on 1 through 29…and try to throw 30 in there.  We are going to make home-made tortillas for enchiladas.  We are going to do our yoga and do our run.  We are going to put together the pom-pom foxes we’ve been gluing together for the past few days, and start on a felt sign that has an owl on it.  We have yet to pick a story for this evening, but there’s still time…

It wouldn’t be hard for me to come up with a list of 30 things we can do today, but I’m going to be OK with 20 for a little while longer.  At least J is happy, you know.  At least we are working on something that he can use later…  At least we’re a little farther down the number line than we used to be, so we get 29 TARBET in a row…or 29 NOODLES and 29 SODA in a row…  I can live with that for now…I can wait for thirty.

 

The way things are…

J is a stubborn individual.  This can work for or against us.  On a day when he is inclined to collaborate with us, we can make great strides.  On a day when he is unwilling to negotiate even the smallest thing, we can all end up frustrated.  Autism is, obviously, one of the issues we’re dealing with here, but Adolescence (capitalized because even in its garden-variety form it is a force to be reckoned with) is also very much front-and-center.  The developmental delays that come with this territory we’ve claimed, colonized and have yet to (fully) understand give us an 18 year-old body with a sliding-scale of maturity that is hard to predict.  The kid who somewhat maturely accepts today that Slinky cannot be held while he’s eating could possibly throw a nuclear-meltdown tantrum tomorrow when the same thing is brought to his attention.

Less than two weeks from today we’ll be going back to the doctor to give him an update on how J’s doing.  Looking back, we know we’re on a see-saw…one day we’re up, another day we’re down, then up and possibly in the air…flying off the thing and landing on our heads on the floor.  That is the nature of this process, but we can’t seem to find a way to be completely negative about it.  Let’s say we’re “guarded” and “optimistic,” shall we?

I firmly believe (and J’s teacher seems to agree) that J is very much acting like a teenager.  Aside from the one ridiculously harmful instance which we’ve yet to get a full report on (don’t worry, I’m sending a note tomorrow so that I can get a proper answer before I go to the psych with J on the 4th,) J seems to be doing OK, but he is…most definitely…MOODY.  That’s the word that comes to mind.  Even when I try to think of it in a dispassionate, clinical, “this could be really bad” way: J is moody.  J is impatient with us.  J feels about us the way we often felt about our parents and other grownups when we  were in a similar developmental stage in life.

I will be honest with you: J’s occasional outburst of SIB would worry me more if they took place in private, if we weren’t there to witness them.  When something like this happens in front of adults who care and want to help, J is -to my mind- seeking attention and asking for something he cannot quite express otherwise.  If, after putting him to bed and going to sleep, I came into his room to find that he has hurt himself when no one was around, I’d freak out…I’d take it as a very, very, very, very bad sign.  This has never happened.

Mind you, J does gnaw at his cuticles, and has been known to chew his fingernails.  If something itches, he will scratch almost obsessively, but these are things that I can work with.  Once a week I spend time checking his nails, making sure that nothing will snag on anything when he uses his hands.  I also check for patches of dry skin that might bother him, and for any spots where clothes might be rubbing the wrong way (I am a firm believer that taking labels off of clothes as been the greatest improvement in the garment industry.)  I check his ears and nose.  I check his scalp.  I make sure that if something might bother him in those departments, we can catch it as soon as possible.  Why?  Because J can be as obsessive about things as any other autistic individual, and because his threshold for pain is one of the most confounding things about him.  The kid who could be bleeding and won’t so much as peep will scream his head off if the plastic thread that used to hold a price tag on a piece of clothing jabs him slightly.

These are things that only “we” understand.  The people who directly deal with autistic individuals on a day to day basis…”we.”  Unlike Fred and Barney, we don’t get the funny hat, but we do seem to have a handless secret-handshake, a lingo all our own.  UnknownWhen J’s teacher calls me, I know we’re going to synchronize our watches, hop on the same frequency, insert the matching keys and enter the matching codes, use the decoder ring we found in the box of Cracker Jacks that is J.  This week, through phone calls and text messages, notes and cryptic communications, we’ve figured out a few things, and we’ve set up a two-front battle plan.  J is, as it were, surrounded by strategy and our battle plan is so well-coordinated that he has decided to go along with it for the time being.

Or, maybe, he is going along because he finds that our synchronized routine fits into his needs.  Whatever it is that J thinks about this, it’s working for the best at this time.  There are now four “Slinky parks here” wood blocks in different areas of the house; when J is working or eating or showering, Slinky sits on one of the blocks.  The same thing is happening at school.  Before we would just let him put Slinky on the table or the countertop, but now we’ve realized that -because his boxing gloves are gone and Slinky has been his beloved constant companion since February- J gets anxious when he loses sight of it.  So Slinky has a resting place…like the cat and the basket.  J feels comfortable with Zelda because he knows Zelda will be parked in the red plastic basket she has in front of every set of sliding glass doors.  From all this we’ve learned that J can now pronounce the word Slinky so clearly as to make us think someone else has been saying it for him…yes, his enunciation is THAT perfect.  That letter S comes out so crystal clear that I almost cry when I hear it…it’s a beautiful sound.

We’re back to timing No-Hats Time, and encouraging Hatlessness.  Perhaps it is another one of those adolescent things, or perhaps it’s a result of ESY not having removed the hats promptly enough, but J has been trying to keep his hats on at school and surrendering them only grudgingly when reminded of the No Hats Rule.

With Slinky he is a four year-old who misses his blanky; with the hats, he’s a ten year-old complaining about not being able to his favorite ratty t-shirt to church on Sunday.

Are we ganging up on J?  Maybe.  Maybe that’s what it is, but we’d rather think of it as collaboration, as helpful-to-J collaboration.  As long as he reacts where we can see him, and we can intervene  as gently as possible to help him through whatever frustration he’s feeling, I think we’re all doing fine.  I like things the way they are…the openness of it.  I worry that someday J might not want to share with us the things that bother him, and -while I confess that it’s heart-wrenching to see him upset when it escalates- I wouldn’t trade being there and aware for anything.  You see so many kids who, in hindsight, were suffering and didn’t get the attention they needed, whose parents voices were not louder than the voices of their fears and frustrations, of their detractors that I’d really rather deal with KNOWING that there’s something to address than not…

Funny hat is optional, but communication is essential.

 

 

 

In search of…

J’s green cargo pants (the ones we got to replace the beloved original green cargo pants that, ultimately, fell apart after years of abuse) are ready to give up the ghost.  Finding a replacement isn’t easy.  The brand is sold everywhere, but not farther up than a size 40 waist, which means we’re traveling in search of pants.  This morning I spent some time looking for pants online, and I definitely can order them from several websites, but I’d rather have J try them on and determine if it’s yea or nay on whatever style we find.

In the meantime, I am going to (as I tend to do whenever the need arises) mend the pair he’s madly in love with until we can find a suitable replacement.  J’s love for these pants is so great that instead of seeing a sack of ugly, mended fabric, he sees Sally from The Nightmare Before Christmas.  images

As long as he’s happy and he has pants to wear, I’m ok with the mending and darning that’s going on, but the pants do need replacing, and that’s what we’re aiming for this upcoming weekend.  Family road trip.  Pants-buying road trip.

After spending the better part of Saturday morning looking for pants that would fit, we all walked away from the stores frustrated.  All we could find that J would like was two sizes too small…and there are remedies for too big, but there is no immediate fix for too small.  As we walked out of the last store we went to, I told J “look, buddy, we’re ALL going to have to exercise.  I have these pants I ordered online that are the right size but…” and I made a bloated face and used my arms to show how paunchy my paunch is inside them.  Famous last words spoken while leaving a store…this morning J dragged me to the garage and we did California Gurls on his Just Dance (and I miraculously survived the experience) and then we did the Long run from the Wii Fit Plus.  Mind you, to get J to move in the way he’s supposed to, I have to vastly exaggerate my speed and movements or else he’ll walk in place in a very leisurely fashion.

I flatly refuse to buy bigger pants than he wears now.  I am not concerned about his appearance, but I do believe that we have to help him get smaller for his health…  I can promise you that he is doing a lot better in terms of endurance, but with the colder weather approaching quite quickly, we see more indoor time ahead of us, and it’s best to establish the exercise routine and movement habits now than wait ’til later.  And I really need to fit into those pants…not that I don’t FIT into them, but they’re basically flannel-lined mom jeans that -regrettably- assume one’s waist is as high and as slim as the ladies’ in the catalog.  I am not the reed-thin, long and lanky type…I’m wider, more anchored to the ground…the pants fit beautifully everywhere except the waist.  So I’m guessing that for the waist to not pinch, I have about five to ten pounds I need to shed…

The other side of the coin, friends, is that I ordered three lovely pairs of leggings that fit wonderfully from the thighs to the ankles.  The waist, however, seems to be sized for clown-pants.  How did this happen?  Well…you know that whole thing about how we see ourselves one way and buy clothes for that???  I bought them XL because, silly me, that’s what I think I wear.   In this world, a woman wearing size 12 pants is considered plus-sized, and I bought them for what the measurements in the size-chart indicated…XL.  I cannot believe that three pairs of leggings from a reputable brand would all be defective in the same way so I made a mistake or…it COULD happen…my measuring tape is a cheating, two-timing, two-faced liar and vile betrayer…  The worst part is that if the legs fit perfectly in the XL, they would probably be too tight in a Large…and, no, running the pants through the washer and dryer did nothing to shrink them.  (That’s what happens when you get a guarantee that they won’t.)

So J and I are both having pants issues.  I can cover my bunchy ones with tunics and long sweaters, and he has to wear his patched up ones until we find others he will love even remotely as much as he loves those.  The shopping trip will also serve the purpose of finding for Dada shirts with longer sleeves (he thinks his arms are growing because all his shirts seem to be too short in the sleeves all of a sudden) and an alternative pair of shoes that J can wear for warmth, but not necessarily for snow.  On Friday, you see, he went up to his annual class picnic wearing sandals and socks because he cannot be persuaded to wear closed-toe shoes until there’s snow on the ground.  Such is the way of the J-dictated wardrobe.  The folks at What Not To Wear would have crawled into the fetal position if faced with this challenge…starting with the hats and working down to the shoes…

One thing can be said about J: he knows what he likes, and he sticks to it like glue.  It’s not just that he’s comfortable in those pants: he has a relationship with them.  Granted, it the same type of relationship a three year-old has with their favorite blankie, but it’s a relationship nonetheless.  If something doesn’t fit, he doesn’t wear it; if he doesn’t like a garment, or if he’s not ready to wear it, he ignores it, sets it aside, shuns it like it plague-ridden.  He doesn’t care about fashion because J has what most people aspire to: style.  Granted, there are glitches in his style, but it’s style nonetheless.  And his style is currently running around with one out of three pairs of pants at risk of falling to pieces sooner rather than later.

They say your clothes shouldn’t wear you, and they’re right…and J, better than anyone I know, embodies the notion of wearing the clothes rather the other way around, but he’s run them ragged and to the point of disintegration.  This process would be easier if J himself was in the “two sizes smaller” department.  The .35 mg of med that we’ve reduced has controlled his weight, but it hasn’t really done much in terms of weight loss.  Perhaps the next .25 will help more???  Nearly two months to go until then…let’s cross our fingers that our search for pants is successful…

 

And merrily we arrive at Friday…

Fall is moving along at a nice pace.  The weather has been clear and sunny during the day, and the evenings are slowly becoming crisper.  The garage has been properly insulated so that we can use the Wii in there, and our pantry and freezer are -thankfully- fully stocked.  Should winter arrive prematurely, we will be ready to face the possibility of being stuck at home, and -if all goes as planned- I won’t have to brave the crowded stores when “grocery shopping season” begins in earnest.

J went to the Buckwheat Festival with his classmates today.  He left early this morning, armed with money for lunch and rides, and happy as happy can be.  Over the past few days I sent Autumn and Halloween stuff that we don’t really need anymore, and they have done up their classroom in a very festive style.  They’ve also made cakes, and they’ve had a grand old time enjoying the change of season and the upcoming celebratory mood that seems to crawl into all of us as the end of the year approaches.  This year we’ve decided to concentrate all of our enthusiasm for Thanksgiving and Christmas because we have a lot to be grateful for, and because Dada will have a bit of vacation by the end of the year, and -hopefully- by then he will be more able to relax…hopefully…fingers crossed…

This whole “getting ready for cold weather” has been left up to me.  I’ve always been the go-to person for all things household related, but now everyone else is really too busy to pitch in, so I find myself (as I’m prone to do) making lists, measuring things, counting supplies, coming up with solutions with very little input from the population I serve.  The menus are left up to me, and even though I post them everyone seems to be surprised by whatever they find served for them at mealtimes.  They have hardly noticed that the A/C has been off for days, and that the heat has yet to be turned on, but cups of tea, hot chocolate or coffee turn up in front of them with cookies or bread while they study or work at their desks.  J happily helps me when he’s in the mood, but he, too, has taken to cocooning in his room and asking for my company when he wants a book or when he feels like a cuddle.  The rest of the time I am kept busy by other things around here, and it almost would seem like we are a regular, run-of-the-mill, garden variety household if we didn’t have J’s hats and his bouncy gait as we walk home from the bus to give us away.

Tuesday is Switch to Long Pants Day, and I’m going to prepare J for it by showing him the weather forecast and taking out all the autumn-related PECS.  When they were little, the kids used to love watching Winnie the Pooh and the Blustery Day, and we still The Rain Rain Rain Came Down Down Down and A Rather Blustery Day when the weather calls for vigorous singing to stave off the sad feeling that autumn can sometimes bring.  J enjoys a rousing chorus of anything that involves a silly dance with all of us so, as you might have guessed, we do this quite often.  TGG, by the way, does a fantastic version of Zuckerman’s Famous Pig from Charlotte’s Web.  E.B. White was none too pleased with the singing in this particular version of his book, but it makes J giggle so much that I cannot fault the decision to feature Sherman Brothers’ songs in it…especially if you consider that we’ve caught J dancing around while he’s filling his snack box and that gives us a chance to sing A Veritable Smorgasbord, which makes him laugh even more.  No one, mind you, wants to be Templeton the Rat, but he is endearing when he’s going crazy at the fair…

So that’s it!  We’re ready…or quite close to it.  We’ve found a certain groove and, until things settle down at Dada’s work, we’ll be on it…and TGG is almost done with school and getting ready for his six-week externship.  He’s chosen a location close to home, and they will be observing him closely to see if he’s suitable for hiring when it’s over.  We all have our fingers crossed and are hoping that what’s left of 2013 works out nicely.  We’re looking for things to slow down a little bit…not a lot…just enough that we can catch a break.

As for J: he is doing well.  He hasn’t really had any behavioral issues at home, and he’s been managing himself quite well at school once he is asked to focus on communicating his needs.  If all goes according to planned and we have no sudden and catastrophic disruptions, we should be able to lower the Risperidone’s dosage one more time before the end of the year.  I think we can pull this off (I’ve talked myself into thinking we can pull this off,) and I’m confident that we WILL pull it off (as in I’ve talked myself into being confident that we can pull this off.)

The note in the comm book is encouraging: J had a fantastic time, and even rode the carousel in spite of initial misgivings about the endeavor.  He ate pizza.  His cheeks are rosy.  He is beaming with joy.  How can I not be confident that we can deal with another med reduction????  Well, easily…I tend to overanalyze things and fret about them even when I claim to not be doing that.  But, yes, today it all seems possible in the best way, and I’m going with that because the trees are changing color, the air is crisp with the promise of another year in the books, and we’ve done a lot to move forward (and some to move sideways) in 2013…right???

And that’s where we’re at on this Friday in late September…the last Friday in September…

sigh…it’s going quite fast, isn’t it???

Still more questions than answers…

Well, the My Kid Got Hurt And Nobody Called Me Manifesto landed firmly on an administrator’s desk and I got a call yesterday afternoon.  Shocked!  Shocked and appalled, they tell me…and rightly so, I told them.  THIS had never been the way we do things with the school and now, NOW, when J is going through a reduction in his med and it is IMPERATIVE that we know about things like this…

I’ll be candid with you, as I was with them: the thought that J might have had a meltdown, and in the process of hurting himself he could have hurt another person horrifies me.  I don’t want J to hit his head (with his hands, against the wall, in any way,) but I don’t want him to hurt anyone else, whether intentionally or not.

That is what I told the principal and vice-principal: of course I worry about J, but this is for their own good, too.  What if J’s not doing so well with the reduced medication?  What if there’s something in that particular classroom that upset him beyond what is manageable?  What if…what if…what if…  I can’t do anything if I don’t know anything.

All the worries I had intentionally set aside so they wouldn’t interfere with the Here and Now, rather than with the Back Then When Things Were Pretty Horrible, have come tumbling back into my mind, sort of like The Three Stooges slapping and poking at each other.  I’d like to send my concerns packing, but I’ve been witness to J’s blindness during a fit of anger before.

J seems calm enough at home, but -then again- at home he isn’t competing for attention with a dozen other kids.  At home we don’t take crap from him, but we also know how to tell him why, and our attention isn’t being -justifiably- pulled in every other direction.  We also understand, at home, that J is very much in tune with our interactions…if we are angry at each other, if someone is worried or anxious, J picks up on it and reacts accordingly.  We make sure he is aware that, while we are upset or worried, we’re fine, and we care that he cares.  It’s not that we don’t argue or disagree, but when we do and J hears it, we immediately make sure that he understands this is a passing thing, that we’ll all be fine but simply need to hash something out.  (One advantage that comes from this is that, in explaining it to J, we often end up explaining it to each other, and it sort of diffuses the whole thing, making it easier to not be upset about things anymore.)

A school is like any other workplace; frictions can arise between people who work together constantly.  I have no way of knowing if, perhaps, two people in that room were having a verbal disagreement (sotto voce, of course,) and J picked it up with his hypersensitive hearing.  By the way, I remember the days of The Bionic Woman and how I thought it would be so cool to be able to hear things as clearly as she did with her bionic ear.  As with Harry Potter’s invisibility cloak, I now think this is an overrated advantage.  If people were speaking to each other in a tone that was tense, J might have reacted to that.  Rumor has it he was “working in a group.”  If this is something he didn’t want to do and his way of expressing discontent was to hit his head against a wall, that’s unacceptable and we need to deal with it.  But, again, I go back to the last time J intentionally aimed for a wall with his forehead and what comes to mind is desperation, helplessness, utter and complete frustration.  J will wail and slap his hands, bump his head with his fists, but going for a wall is an extreme move that -to my mind- indicates extreme conditions…

Is it because of the med?  Are we, once more, treading into psychotic episode territory?  This is eating me up inside.  I am worried to the point where I am ready to call the psychiatrist for an evaluation if I don’t get a straight answer about what transpired the other day.  I explained quite clearly, I hope, to the people I spoke to yesterday that this is not about blame, but rather about why they didn’t report to me an incident that might have other implications of great importance.  Does that make sense?  Does it make sense that I need to know, and that if it was that they were bickering, or they were impatient, or he had gas he couldn’t pass, or he wanted something they rightfully said NO to, I still need to know???

So I write this while my brain is dancing around frantically, trying to figure out WHY they wouldn’t call me.  My stomach is in knots.  If J’s having a slide back into some sort of darkness, well, we’ll hopefully have the backbone to deal with it…there’s no alternative because we’re in and we’re committed.

Hopefully it was just gas…