We’re pretty covered for the agony of defeat…

It’s been a setback weekend.  And it’s not even bedtime on Saturday…ye-ay us!!!

As I type this J is sitting in his TV room wearing a beanie that has an icepack attached to it. This is because he has a lovely goose egg that starts to go away and then the SIB starts again and…hello, Mr. Goose Egg.

Since this is on the same side where the hand that is evil and hit hims is located, he cannot hold it without feeling that it’s a pointless task because it’s boring, and he then puts the icepack on the table and the goose egg doesn’t get any smaller (but the coffee table gets nice and cool.)

I am a never-say-die person so I took a beanie I’d made a few years ago, and I laced a ribbon through the band, and then slipped the icepack in, and fitted it to J’s head.  The initial reaction was “no…I want to hit myself instead of this,” but then he realized it was soothing and he’s been walking around wearing it for over an hour.

But the hitting continues.  It happens as soon as the wrist stabilizer is removed.  It is a compulsion.  We know this.  It doesn’t make it any less difficult for anyone involved.

The one thing I have come to realize is that the Charlie by Revlon commercials of the late Seventies lied.  No, I can’t have it all.  No, I can’t look sophisticated while doing it.  No, this is not just going to “go away.”

After a grueling day, which shouldn’t have been grueling, I am going to take a different tack on Monday.  Instead of playing loosey-goosey with J’s time and letting him be a little in control, I am taking it all away.   For the time being, at least.  I think he needs us to focus him more than he has been, and that’s what I intend to do.

Dada and I talk a lot.  We always have.  We talk about politics, the weather, our children, movies, music, and how to handle all the curve balls that life insists on pitching at us.  Today we talked about things that scare us, and one of them is that we are fully aware that we are doing this alone, and we can’t do it alone.  That it is being done in this fashion is indicative of the fact that we ARE alone.

So…what do we do?

We make a new schedule.  We drink more coffee.  We sleep less.  We work harder.  We concentrate of the important stuff and we let the tiny things fall off like flakes of confetti. We trust that all this will work, and that we’ll get to the other side of this crisis before it gets to the other side of us.

It’s as simple as that.  We cannot give up.  We cannot give in.  We cannot choose to not do what needs to get done and hope that it’s the right course of action.

No.  We will do this.  We will not figure out Autism, but we will find a way around some of its corners and bends because we have done it before, and it wasn’t easy then, and it won’t be easy now.

Maybe we’ll need meds again.  Maybe we need to find someone to come in and clean the house for me.  Maybe we need more pinch-hitters to come help so I can take a shower if I need one while Dada is not home.

I am a little resentful, and I know I shouldn’t be.   A lot of people who said they’d be there for us have simply fallen out of the picture.  I don’t mind this for myself as much as I mind it for J.  These people promised him, tears in their eyes, that they would come see him, call, or he could come visit them.  And then came the radio silence.

I know, and I want to reassure you that this is heartfelt and I’m not trying to be nice to myself, that people are busy, and that we cannot be, are not, should not be the center of anyone else’s life.  I know this.  We have been doing this basically by ourselves for a very long time.  But…

People forget that J understands more than he lets on.  Granted, J can be obtuse about abstract things, but he does understand when you say “I promise” or you tell him you’re going to do something.  When people cry and tell him how much they love him, and that they’ll come see him and then they don’t…it hurts.  If I tell J that we’re going to the movies, and I have to cancel that because he has been rude and that’s the consequence I’ve used to make him correct his behavior, I tell him how very sorry I am but we’ll have to do it some other time.  It makes me feel like shit, but if I’ve said “if you do THIS when I’ve asked you to stop, I will have to do this other thing to show you that your behavior means something.”  And, yes, it pisses him off and he doesn’t always understand WHY I’m doing what I’m doing, but I reinforce this in several ways (for example: PECS Prison…it has a window and everything, and J knows that if I say “we’re not doing this because of that” the PECS card goes in that envelope…sadly waving at us through the window…)

If I tell J “I will come in here in ten minutes and hug you and kiss you,” I go in there in ten minutes and do what I promised.  If I say “well will do our exercises in half an hour,” I am in there in half an hour.  J remembers these things…and if I am coming down the stairs to get him and he knows it’s time for something, he meets me halfway.  He waits for Dada to come home; I tell him beforehand if he’s going to be late.

So, in a way, J had been waiting for some of the people who cried, promised, insisted (while looking him in the eye) to come around.  And they haven’t.  All I am left wondering is if they thought he wouldn’t take to heart what they said to him.  TGG is on J’s shitlist because he left to make his own life one day, and didn’t really sit with J to explain.  WE tried to, but TGG didn’t, and J now acts like “ah…you’re here…how nice of you.”

I don’t know if my strategy will work, but it’s the only one we have right now that seems somewhat viable.  Less sleep, more coffee, less loosey-goosey, more structure…

Wish me luck…coffee bean donations are not necessary…yet…

A glimmer of hope…

I could hear the thunk of SIB before I opened the door.  I waited a minute before going to check because I wanted to make sure that J was not HAPPY as he did this.  When I opened the door he was sitting without bandaids, looking slightly forlorn, and halfway through his yogurt.

We’d had a good morning up to that point.  We made some lavender soap (commissioned by a kind cousin who loves J and wants him to have a project,) and we’d done a quick dash through our chores.  Beds were made, dishwasher has been run, breakfast burrito was consumed…

Now, at 11 a.m., a minor crisis.

BAND-AIDS! J said

Ok, go get them!  I’ll put them on you, I replied.

BAND-AIDS! he repeated.

Go get them, baby.  We’ll have those band-aids on you in a sec.

He got up a little slower than I expected, and as he reached the door he turned towards the DefCon board I placed there for easy access.  He took of the PECS that represents him, and moved it to FRUSTRATED.

It’s in poor taste to celebrate another person’s distress so I controlled that feeling.  I took J’s hand and said “let’s go get those band-aids right now.  Thanks for telling me why you need them.”

We climbed the stairs to the third floor, found a GREEN package of band-aids, and I asked if he wanted to sit on his bed to have his band-aids applied.  He sat down and we started unwrapping each strip.  I repeated how grateful I was that he had asked for my help, and told me how he was feeling.  I said he can always always tell me so that I can do my best to work on making things better.

Halfway through our band-aid routine, J said SORRY.  And I said “that’s ok, sweetie.  You told me you needed help, and I really appreciate that.  No need to be sorry.  We are here to help.”  I probably sounded like a flight attendant, and I tried to inject a soothing tone into what I was saying.  J helped me put the band-aids in the exact spots he prefers, and then he said HAPPY.  Instead of asking if he was actually happy I simply asked “you’re feeling better?”

We stopped at the supply closet and replenished all the band-aids in the baskets.  We packed up our trays and envelopes, and made our way downstairs.  I told him to put his share of the load on the table, and to finish his yogurt before refilling his band-aid packs.

On the way back into his TV room, J stopped at his DefCon board and said HAPPY while switching his PECS card to the corresponding emotion.  I know he’s more relaxed than he was when he first asked for help, and I know that it went a long way when I said I was here to help him and thanked him for communicating with him.  I also know that he is not yet HAPPY…but he’s working on it.

I did call Dada.  I figured an e-mail wouldn’t properly convey the excitement of the moment.  The sigh of relief was audible, and he said “that just made my day.”

The thing, you see, is that we know 100% happiness 100% of the time is an unrealistic expectation for anyone.  We understand that everyone goes through ups and downs, and that it is only fair that we acknowledge for J that he has a right to these things just like we do.

When I talked to his psych on the phone yesterday I asked if, perhaps, some of the mental illness that has plagued my family could be peaking at this point for J.  He asked some very important questions: has he stopped participating in the everyday activities he used to enjoy?  Does he seem listless and despondent?  Has he lost all spontaneity?  Can you still redirect him?  Based on my responses he said that it might be a cycle of anxiety, and we just need to observe J closely.  Should he hurt himself, and should we find it impossible to intervene in a positive manner, then the story changes, but J still has fun, still laughs, still participates in his and our everyday life with enthusiasm.  He certainly hasn’t lost his vanity, and he seems to be seeking a palliative for something that he can only externalize by hitting himself.  He knows it’s wrong, and he’s aware that it worries us…

And now he’s told us he’s FRUSTRATED.  He’s asked for HELP.

I think for today that’s a huge step.  We might slip back to being incommunicado tomorrow, but today we’ve done well.  It’s early, I know.  It’s a small thing.   A wisp of a thing.  A minuscule thing.  A microscopic thing.

It’s huge to us…

Oh, a little better and a little worse…

In a week we have gone from senseless SIB to a more moderate approach.  We actually had one full SIB-less day.  It was short, but it was also truly lovely.

This is all, we suppose, anxiety over some unnamed event, incident, feeling, concern, fear, perception that J cannot express clearly.  That’s what the amount of band-aids J has been using tells us.  He made over 20 packets (half of them the green with the seven strips, two of which go to his forehead, and half of them the red that only has five for thumb and fingers…) and he’s down to about three.  This is since Sunday…that is a lot of bandaids.  On Monday I ordered a ridiculous amount of bandages from an online medical supply outlet, and they were delivered yesterday.  The logic behind this (aside from making people wonder what the heck goes on in our household) is that if we have more than we need, we will need less.  The same logic that applies when one keeps the ER-ready bag with extra blankets, clothes, etc….if you’re packed, you won’t go.  If you don’t pack, the kid will be so sick that you will have to reupholster your car.  J opened the box of boxes of bandages and his reaction was similar to the happiest child on Christmas morning.  Go figure!

In the middle of all this head-hitting I’ve noticed that J shakes his head as if to stimulate himself.  It’s not a strong shake, nor is it consistently there…it just, once in a while, happens when he’s done hitting himself.  I was telling Dada that, as a child, I used to do that if I felt a bit of a headache.  I wanted to see if it REALLY hurt.  (Hey, no judging…I was a weird child, and this has been firmly established over the time I’ve been writing this blog!)  It’s almost as if he wants to make sure he has hit himself hard enough.  He doesn’t say it hurts, but when I’ve offered him liquid acetaminophen, he’s accepted the dose.

It could be, maybe, that his wisdom teeth are coming in.  It could be that he is just overindulging in the self-stimulation that is all too common in people with ASD.  It could be that he is upset.  We just can’t seem to figure out EXACTLY what the root of this is.

Right now, as I type this, I can hear him giggling as he listens to music and looks at the cute little spider that is frozen on his TV screen.  Last night we finally got his helper to stay with him for a while.  We had hoped to do this on Saturday, but he was too over-stimulated for us to feel comfortable leaving her alone with him.  Instead we stayed home and focused on him, and he slowly leveled off nicely.  Yesterday he was happy to see her, eager to see us leave, and was deemed only “slightly obstinate” in a text message response to my query about how he was doing.  He was happy to see us come home, and there were no demands for extra pay, and she didn’t run to her car as if in fear of being followed.  Of course, she might have been playing cool.

So…definite semi-progress.  We are trying our best.  And we have acquired what we refer to as Def-Con J boards from the lovely people at Amazon.com.  Of course, these are really Autism Supplies And Developments PECS Feelings Boards, but it’s more apropos of the absurdity that is our day-to-day life if we alter them to have mustaches, goatees, and full (ok…somewhat sparse) heads of hair to help him recognize himself, and we call them Def-Con J boards.  What can be more effective, when out on errands, to get a text from the helper saying DF5?  You will leave your cart in the middle of the store and run out while yelling beat to quarters, and you might be black-listed at that particular store, but you will know what to expect as you pull up to your driveway.

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Now, of course, I’m working on getting J to understand that he doesn’t ALWAYS have to be HAPPY.  SAD, FRUSTRATED, MAD are totally acceptable feelings if they are expressed and we are allowed to help him work through them.  I know, I know…too abstract a concept?  Maybe?  Well…it has to be taught.  J shouldn’t feel pressured to ALWAYS be happy.  J should know that we love him no matter what, and we want to help him through whatever is bothering him, and being upset is totally fine.

There you go…

Thursday…

We plod on…

with the occasional bounce inserted for good measure…

Enough was too much…

A meltdown a day I can deal with; a tantrum for the sake of a tantrum just because he can…well, that’s another story.

Mind you, my friends, I know the difference.  A meltdown has, at its core, a level of frustration that moves J to behave in a manner that will get him attention for something he cannot express is wrong.  A tantrum comes with a sly smile and says “dance, monkey!  Dance!”

Oh, we were patient throughout.  We bathed him as he beat the crap out of himself, and smiled.  We took deep breaths as we saw his hand get redder, and we tried to divert him.  He was relentless.  He was enjoying the power he was exercising.

And then I calmly sat him down.  I showed him how red his hand was, and I told him that there would be NO PIZZA FRIDAY, and NO FIVE GUYS SATURDAY.  He had not been melting down; he was being a brat.  I then informed him (before ten P.M….egads, Brain!) that it was bedtime.

SORRY!

Bedtime.

PIZZA.

I tap the iPad screen and the Proloquo says: NO PIZZA FRIDAY.

FIVE GUYS.

I go back to the iPad: NO FIVE GUYS FRIDAY.

SORRY!  I LOVE YOU.

Oh, we love you, too.  Bedtime.

SORRY!

Get your story, pack your things, and up we go to bed.

STORY?

Yes.

SORRY!

OK, bedtime.

PIZZA.

The iPad talks for me: NO PIZZA FRIDAY.

FIVE GUYS.

Nope, buddy…nothing doing.

SORRY.

I accept your apology.  I won’t give you a reward for it though.

I go back to the iPad and tap buttons in quick succession: J RUDE.  J NO UPSET.  J HIT.  HIT WRONG.  MAMA AND DADA WORRIED.  J GROUNDED.

Stunned silence, and acquiescence.  He gathers his things, and we head upstairs.

When we get to the kitchen he looks at the board where PIZZA, TARGET and TAXI were on display for Friday, and FIVE GUYS was on for Saturday.  I calmly take them down and put them back in the tray.

J looks at me.  SORRY.  I say “I appreciate your apology, but I cannot reward a tantrum just because you think it’s funny.  Upstairs, please.”

Of course, he turned on the charm while we went through the bedtime routine, but I stayed cool and calm, said GOOD NIGHT, and left Dada to read Mouse Soup.  We were all in bed by ten-fifteen, and then J came into the room to check if Dada had clothes out for work.  I told him to leave the closet alone, and march to bed.

At 5:45 this morning he walked into our room and said COFFEE.  We told him to go back to bed.  At 5:52 he repeated his request.  I got out of bed, put a timer on for him to stay in his room, and went back to bed.

How do I know that last night’s incident was a tantrum and not a legitimate meltdown?  Because my son has been trying to be as charming as can be, and he has been SIB-free all morning.

Oh, that might change.  It might be a SIB-ful afternoon, but this is proof that J knows what he’s doing, and he also knows that there is a point when I will no longer go “poor baby!  Do what you will with my nerves.”

I feel empathy for my son.  I really do.  I want him to be happy, and I want to help him in any reasonable way I can.  I also don’t want him to use SIB as a form of entertainment.  “Oh…I’m bored…let’s make the parental units jump, shall we?????”  A legitimate meltdown is something that I can unravel and, perhaps over time, find a way to help him manage better.  I will not accept entertainment-value tantrums.  I will not sink to the level of “reality TV” just because there’s nothing of quality to view at the time.

It is a dreary day.  Rain, clouds, fog, gray…and we’re indoors, and we’re stuck with each other.  We will be entertained, interactive, affectionate and communicative, but I hope we will also manage to have a little peace of mind today.  If he is genuinely upset, we’ll deal with it, but I will not encourage him to manipulate a whole day simply because he can.

Would allowing this help him at all?  I don’t think so…but I might be wrong.  Feel free to chime in!

We go to see the “Talking Doctor”

J makes a very clear distinction between doctors that worry him and doctors that don’t.  His psychiatrist doesn’t worry him…much.  That’s who we refer to as the “Talking Doctor.”  There will be no poking, prodding, auscultation, drawing of blood, use of any type of needles.  The only anxiety J feels when we go there is when he encounters other patients in the general outpatient waiting room.

As with every other mental-health facility, the one we visit is full of people with a variety of situations that, when gathered in one room, can be a bit overwhelming.  Some people don’t like crowded rooms, low ceilings, things that are not orderly…many anxieties in one room can bounce off each other, and the vibe can be overwhelming.  J puts off these vibes, too, so when they come back to him from someone else, it seems to emphasize them.  Yesterday he locked eyes with a young lady who stared at him in a way that unnerved him, and I’m sure he unnerved her too, but their responses were different: she started laughing nervously while fingering a rubber band she was wearing on her wrist, and J just burrowed into me and started squeaking anxiously.

We have come a long way because I simply had to say “I have you, dear.  I will make sure you’re fine,” and he allowed the nurse to lead us to a smaller waiting room closer to our doctor’s office.  This smaller waiting room is divided into an area for older patients and an area for children.  J likes the rug in the children’s area so he sat in one of the bucket chairs while I sat next to him with a low table between us.  While we waited I read stories to him; I am in the habit of carrying several of his books with me when we go somewhere that involves a wait.

People started coming in to wait for their doctors, and there we sat reading and giggling.  I realized that in this scenario we were the odd birds: two adults happily sitting where the more colorful rug dominated the room with The Fat Cat Sat on the Mat, Froggy Gets Dressed and Peek-a-Boo! for entertainment.  The other patients, many of them children under the age of 12, sat with cell phones in their hands; their parents were also on cell phones.  J had his iPad, of course, but he was turned towards me, and we were both looking at the book and animatedly interacting over the words.  When we ran out of books, we both looked at his Hugless Douglas and Charlie Brown apps on the iPad. Several times we looked up to see people giving us strange glances, as if we were doing something terribly unusual.

This was our next-to-last visit to the psychiatrist.  He is pleased with J’s progress and development, and since he has been med-free since last December, we agree that we have moved past the more serious issues that used to hinder our young man.  A calmer, more focused J went into that office yesterday, and sat calmly listening to what we had to talk about.  He didn’t interrupt or ask to leave as he usually did in the past.

The doctor and I talked about how TGG’s absence has affected J.  We also talked about how the sudden integration and equally sudden disappearance of his nephew from our family life has affected J.  The doctor agrees that these things are very difficult for J, and that it may take him a very long time to overcome the resentment and antipathy he seems to feel for his brother now.

I also explained to the doctor that TGG came to visit for Dada’s birthday and announced that he is about to become a father again.  He also has decided to get married.  He had known about the pregnancy for a while but had opted not to tell us.  We don’t know if the marriage proposal was the result of finding out about the pregnancy, or if that came first and the other second.

Were we upset?  I don’t know.  We were not surprised.  TGG has moved so fast on all these life-altering decisions over the past three years that we cannot say any of this comes as a shock.  We have never met his girlfriend, or her two children.  We have never met her family.  We are still recovering from the previous girlfriend pulling a rug from under us; we opened our hearts and our homes wholeheartedly, and then discovered that there were many conditions to our involvement in our grandchild’s life.  Things got emotionally messy, and  it was proving overwhelming for J.  We had to tell ourselves that, while we are probably being horribly selfish, we have to think of J’s well-being first and foremost.  He has no one else to look out for him.

We asked TGG to please understand that an instant family is not an easy thing for J to adjust to, that it’s been a rough year, and to give us time to see how we can navigate this situation so that we don’t have any regression that will affect J’s transition into a more independent life.  We don’t think TGG gets it, though.  That very night he was asking when we could get together for lunch or ice cream to meet everyone.  Dada and I have spent many hours talking about how this is going to affect everyone, and we don’t see J taking like a duck to water to two toddlers, a baby due in February, and his brother’s soon-to-be wife as frequent fixtures in our home.  The year-old baby we introduced last year who disappeared shortly after turning two was heart wrenching for him; I had to make the PECS that indicated his visit disappear, and J spent a good long time not wanting to watch The Three Little Pigs because that is what he and his nephew used to watch together.  The high-chair we have stored in the garage is now covered with a blanket because J would stand there and stare at it when he went in to get his snack box ready in the mornings.

The doctor agree with me: J’s equilibrium and mental health are a priority.  We need to make sure that we take him into consideration as we move forward with all these changes, and that might mean that TGG has to cool his heels for a while before introducing his whole family.  Of course, TGG has never been one to cool his heels, and he seems to have lost touch with what we’re up against here.  We know what it’s like to have small children; we know what it’s like to go from me to us to ALL OF US in short order.  We understand, but…we are middle-aged people looking at the shorter side of life while caring for a developmentally-disabled adult who has mental-health issues.  We have to tread with caution and exercise wisdom.

So many things have happened this year: my father passed away, TGG moved out, we gained and lost a grandchild in a very short time, J finished school…and now we have more skipped beats, lost stitches, knots, and hiccups in our story.  It is inevitable, but it also has to be handled with a certain finesse.  The doctor wants to make sure that J doesn’t feel like he’s being imposed on and reverts to the unmanageable anxiety that caused his bouts of aggression, SIB, and depression.  We don’t want to go back to meds.  We want J to move forward, and that takes work.

I was recently told that I am a narcissist.  As a child I would run to a dictionary when a word I didn’t know what used around me; the definition I know of narcissist doesn’t really apply to me, but I suppose it could be used in a wider sense.  Because it’s what I do, I’ve gone back and read what this means, and I still don’t think it applies to me, but I am not as intelligent or successful as the person who called me this.  If anything, I think I simply am an introvert, and I focus on my family because, well, no one else outside of this environment will do it for me.  Our well-being as a unit, and the well-being of each of us as individuals is important to me.  I make no bones about not being a people person, and I know that people, in general, do not like me.  It is not a loss to either entity.

In the past weeks I have realized that, yes, we live in this bubble that is hard for others to understand.  I understand everyone has their own bubble, but ours seems to carry with it certain pitfalls that are outside the realm of understanding for outsiders.  I can easily empathize with people’s situations because they are more easily and readily accessible to human experience; our situation, unless you have experienced it more personally, seems to elude the grasp of those who don’t deal with ASD on a daily, non-professional basis.

The doctor gave me a measure of peace of mind.  He is concerned about what all this upheaval can do to J, and he wants us to be as sensitive to his needs and reactions as we possibly can.  Dada and I have talked about it, and we will set up an opportunity to meet with TGG and his family to explain in person WHY we need to take things very slowly.  Will they understand?  Ah, that’s another matter entirely…we’ll see.  We can only hope…

So…there you are.  Feel free to give your opinion.  I listen to all, and I do take them into consideration.

 

 

A tremendously huge milestone…

Consider, please, that J is 21.  He is signed up for Selective Service, he can buy alcohol (which he doesn’t like,) porn (which I’m sure he’d enjoy)  and cigarettes (the smell of which he finds disgusting.)  He can go into the movie theater and watch any movie he wants…no restrictions.

And now, drumroll, he can tie his shoes.

Is it done prettily?  No.  Is it done quickly?  No.  Is it done without an intense look of concentration?  No.  But it’s done.

Not bad, I think, for a couple of people that the world assumes spend their whole day twiddling their thumbs.  No, dagnabbit, we get stuff done…and that stuff, right now, is shoe-tying.

Don’t ask me how it happened.  I’m pretty sure that it was as close to Eliza Dolittle surprising Professor Higgins by properly pronouncing and enunciating her way through “the rain in Spain stays mainly in the plain.”

First one shoe…then another.  After years of  trying and trying, and failing and failing….

You know how people say “in the end it was anti-climatic?”  It wasn’t.  It really, really wasn’t.  Two days running, it still isn’t.  We actually celebrate it every time he does it.  It’s almost up there with when he finally got potty-trained at the age of eight.  It’s a big, big, BIG deal.

I am sure that people think we do very little when we’re here all day.  I know this because people often complain that I don’t answer their calls, e-mails, text messages, and don’t have “time to hang out” with them.  I am tempted to do an auto-reply on my e-mail and text, change our voicemail greeting, and have a t-shirt made that reads “trust me, we’re doing important stuff.”

Life sometimes reminds us that we’re not just running on idle.  Life sometimes throws us a little gift like this miraculous shoe-tying development.  I would say we’re not worthy, but I firmly believe that we are because we try, people; we really really REALLY try.

In the middle of everything else (the tense negotiations about the PECS board, the echolalia that drives us to distraction) a little ray of “we haven’t been wasting our time” shines through, and J achieves something that truly makes him more independent.  And he is proud of himself.  This is not just about us not having to sit on the floor with his foot on our leg as we tie his shoes…this is about J being able to do a little more for himself.

Many of my friends announce their children’s achievements on Facebook.  I think that’s tremendously cool.  Moving away from home to start college, joining this or that organization, winning this or that competition.  Even those friends who have kids with disabilities share their successes, and -believe me- I rejoice with them.  I don’t feel envy, but I do have moments when I wonder “what would have J done if…”

I snap out of those.  I know he’s doing a lot.  I am aware of the effort he puts into everything he does.  I am tremendously proud of him (even when it’s a “I have to say this X number of times to quell my anxiety) and I tell him all the time.  He knows the sign for PROUD, and when I tell him I’m proud of him he smiles broadly.  J knows.  J is aware.  J accepts the recognition, and he values the time we spend working because he knows he’s going to figure something useful out in the end.

It’s not that we don’t get frustrated.  We do.  Some days can feel long.  Some hours spent working on a seemingly menial skill can feel even longer.  We have moments when we both get upset and have to take a breather from each other.  There are times when we set aside whatever it is we are trying to master (we…yes…not a royal we…both of us are trying to master it…he the learning, and I the teaching) so we can try again later…maybe much later…both of us refreshed and renewed.

We enter September with a new skill learned.  It’s a biggie.  We are thrilled.  We are thankful.  We feel empowered.  On to the next thing!  Bring it on!  We can do this!!!!

Of course, we’ll have to stop dancing little random jigs to get on with whatever comes next, but -for now- let us bask in the glow of the shoe-tying.

 

 

Dear Boxing Gloves…

It was four years ago today that we saw you being left behind when J left for school.  We were stunned by this development.  I’m sure you were stunned also.  You had been his constant companions for two years, and he wouldn’t put you down voluntarily for anything other than his shower.

We saw J eat meals, sit on the toilet, get dressed, sleep, walk, do chores all while encumbered with the four of you.  Awkward though this was, you were a welcome presence.  Before you, J had been beating his forehead with his bare fists, and we’d seen boo, scabs, bruises and scrapes appear and disappear in an constant parade.

For some reason, his first comfort item was a balloon.  We had a shoe box full of balloons because, of course, they would pop or deflate, and J would get upset and, hands free of this item, he’d hit himself.  You, his Everlast boxing gloves, were part of his “uniform.”  He also had a sparring helmet to match.  We used to joke that kids at school wouldn’t mess with J because he is tall, big and was professionally equipped for a rumble.

We tried to make light of it because we had to; what do you say when your kid walks around with four boxing gloves and doesn’t let them go for any reason?

The day he got dressed for school and, rather valiantly, pushed you aside when we handed you over, we almost cried.  We didn’t cry because we didn’t want him to think we’re wusses, and we didn’t want him to hesitate.  He had made this decision, and we were going to be encouraging.  The moment J and Dada left to wait for the bus, I sat on his bed (with you,) and called his teacher.  I remember telling her to let us know if we needed to run over there with his comfort items at any time during the school day.

J came home and found you on his bed, waiting for him.  And he was fine.  He never carried you anywhere again, but he always makes sure that you are neatly placed by Raggedy Ann, Minnie Mouse and Daisy Duck when he makes the bed in the morning.  He also tucks you in next to him at night.  He is fond of you, and you still give him comfort.

Four years is a long time.  We know that Slinky has lasted as a comfort item way longer than you, but we also know that Sparring Helmet was soon replaced with Scrum Cap Covered By Rasta Hat.  By the way, you don’t see it during the day, but Scrum Cap Covered By Rasta Hat hangs on a hook near J’s PECS board in the kitchen.  It goes there when he comes downstairs in the morning, and doesn’t get picked up again until he heads up to bed at night.  He sees you more frequently, stopping by when he’s doing his chores, making sure you haven’t fallen off the bed.

I don’t think we’ll ever get rid of you.  J likes having you around.  When he’s sick, he curls up with you; when he’s well, he feels comforted by your presence.  Slinky is his wing…item, but you remind him of how far he’s come, and that it’s ok to sometimes need something to make you feel better.

I wanted to say thank you.  I also wanted to let you know that we remember all you’ve done, and we see your being left at home as a positive milestone, not a negative one.  We don’t forget that you were there when J was being harmful towards himself, and you stopped quite a bit of nasty bumps that might have happened.

These are usually given to the fighter, but we think you deserve them…

Golden_gloves

Sincerely,

J’s parents