Don’t let the smell of regression intimidate you…

First it was “pull my sleeve down and cover my hand.”  I said NO and rearranged his shirt so it was resting properly and squarely on his shoulders.

A few hours later, a smiling, happy J came into the living room with a boxing glove in his hand.  He asked me to put it on him.  Same hand that he wanted covered with his sleeve.

I said NO in the same tone used when saying “silly rabbit, Trix are for kids!!!!”  He smiled and, slowly, made his way back to the third floor to put the glove in his room.

I decided the tack I will take is to keep his hands busy because idle hands and all that good stuff…

It’s still eleven days to ESY.  I think he’s bored.  I think he wants attention.  I am confused because he constantly kicks me out of his presence.  I am willing to try anything; whether it’s leaving him alone, checking on him every five minutes, taking walks when he least expects it, doing crafts, just sitting there…  I’ll try it.

I am aware that he is 20 years old.  I understand that he is not operating on the same system as I am.  I understand -especially after seeing Inside Out..go see it…it’s a must- that the little Mindy Kaling in him is probably taking over the control panel.  I’m even ok with his inner Lewis Black putting in an appearance.  I get the whole thing about a new improved, more complex control panel.  I understand that regression is normal.  I understand that unhappiness in small doses can be a good thing.  I understand that he cannot always do what I wish he would do.

Tomorrow we go to the psych for the first time in six months.  I was hoping to wave goodbye to the Risperdal, but now I’m not so sure…  To paraphrase Sheldon Cooper’s thoughts on gravity: Autism, thou art a heartless bitch!

Tomorrow is, as Scarlett O’Hara said, another day…

Bad, bad Mom…

I’m a bad mother.  I admit this, and I carry it with a certain degree of pride.  The poor quality of my mothering doesn’t rest on how I treat my children; I actually think I’m fair and kind, and as patient as I can be within my abilities.

I’m a bad mother because J could be on vacation as of tomorrow and I actually asked his teacher if he could go to school at least ’til Wednesday.  Instead of rejoicing in the knowledge that J could be home and relaxing as soon as tomorrow morning, I negotiated two more days of instruction for him.

Why?  Well, the reason J could be on vacation as soon as tomorrow is because he doesn’t take any academic subjects so he is not included in the “final exams” schedule.  Just about everyone else in his class takes a final here and there; the ones who don’t are starting their vacation tomorrow.  I’m the only parent who has asked to pleasepleaseplease let my kid go to school Tuesday and Wednesday.  So the teacher has agreed to have him there because she and the mentors have to be there and I feel like a very bad mother.

I lied.  I’m not in any degree proud of this.  I should really be relishing the idea of having J on vacation, but I can’t.  As soon as we hit “I’m home for a couple of weeks” mode, I will be swamped with the obligation to constantly be “on.”  Even when he is up in his room, entertaining himself with a movie or music or anything else that might strike him as fun, I am “on.”  It’s not that I’m overprotective, it’s just that when you have a disabled individual in your home, you know that -unexpectedly- your attention might be required.

Things I usually do more than once a day when J is on:

1)  Check on a strange noise coming from the area where he is; by strange I mean hisses, clicks, grunts, cracking sounds, popping sounds, something that could be crumbling paper but makes no sense to my brain or ears…

2)  Check on inexplicable silence in the area where J is; if you have children you know noise worries and silence can send a chill down your spine.  My children have usually been up to absolutely no good when they are not making any noise.  Silence is the warning of possible mischief;

3)  Engage in a semi-verbal battle of wits; you know the “noodles”/”no” drill…this has different incarnations: “soda”/”no,” “crackers”/”no,” “let’s do chores”/”no,” “how about a walk?”/”no,” “time for your Wii run!”/”no,” and so forth;

4)  Clean things that are already clean or that do not require immediate cleaning because J has decided it is the ONE viable outlet to remedy a sudden pang of boredom;

5)  Start a game or task together at J’s behest and suddenly be left to complete it alone;

6)  Merely say “hello, just thought I’d check on you!” or “hey, whatcha doin’!?” only to be greeted with a smile and “BYE!” like I have cooties;

7)  A flat refusal to do something he would regularly do without being asked, just because the argument fills the time…

When J is on break from school, I am usually ready for bed by 8 P.M.  J, on the other hand, is refreshed by the arrival of new people to give the run-around to and can stay up until the cows come home.  I have tried to keep him busy, and I am mostly successful, but J thinks I’m tremendously boring.  We bake, cook, clean, do puzzles, watch movies (in five-minute chunks because he kicks me out of the room,) dance, go for walks, do crafts projects…but he finds me to be a major living, breathing, walking snooze-fest.  The most fun he can get out of hanging out with me seems to be the proverbial “noodle”/”no” sparring contest and watching me jump through hoops trying to not lose my cool.  Yes, this is entertaining to him.  I have to admit I do look rather ridiculous when I do this.

The other complication that comes my way when J is home: food.  The biggest downside of the Risperdal is that incessant hunger J seems to feel.  Believe me: we do our best to curb his consumption of food and we are pretty successful, but his appetite is quite voracious.  No sooner has he had something to eat that he wants something else.  Have I mentioned I say “no” a lot?  Well, I think I say it even more than I’ve indicated in the past.  It’s so automatic now that I even answer “no” when I mean to say “yes.”

The one thing I am profoundly grateful for is that J no longer has tremendously scary meltdowns when I deny him something.  He is very Zen about these things, but he is also very persistent.  J knows every human being has a breaking point, and he will calmly express the same request over and over and over and over until Daffy Duck possesses mom and she starts running around, standing on her head, leaping over furniture and making strange noises.  I will still say “no,” but I will need to go for a walk and cry a little.  J is, as his older brother would say, an “evil genius” that way.

J is also very stealthy.  I’ve told you this before: no 5′ 9″, 200+ pound human being deserves to be so light on his toes!  Yes, he runs from place to place and the pictures on the walls are suddenly askew (we’re not talking concrete construction here,) but when he wants to go from Point A to Point B undetected, J can be as graceful as Nureyev.  Of all the inhabitants of this townhouse, J is the only one who can go up and down two flights of stairs totally undetected in spite of how loudly said stairs creak and groan for everyone else.  And J, bless him, can open any package of food undetected…I’ve considered putting jingle bells on every package of food he might be tempted to open or move, but I get the feeling this kid is really Obi-Wan Kenobi.

It is selfish of me, and I hate myself (from time to time) for wanting to stretch out the time during which I actually have random moments to myself.  J is not my nemesis, but he is -indeed- the source of constant, relentless activity when he is home.  As a general rule I think too much, but when J is home I think ceaselessly.  I know it’s selfish of me, believe me, and I wish I could be a little less so, but I will have a chance to make up for it starting on Thursday morning and all the way through to January 2nd.  I promise you: I will pay for this in spades.