Rules for Saner Living

Living with a person who is on the Autism spectrum means adapting to some pretty quirky behaviors.  These behaviors are different for every person, family and sometimes even situations.  Some behaviors need to be corrected immediately, others are pretty inocuuous.  In our house, we  have developed some rules that we live by every day.  Failure to not comply with these rules can lead to anything ranging from sheer fun, a long and drawn-out meltdown or (heaven forbid) something catastrophic as Joel is almost completely unaware that he is not indestructible.

I broke the first rule about making sure all the doors are locked this afternoon and Joel got into the bathroom and started the bath.  If I didn’t let him take a bath, there would have been a huge meltdown.  So, while I was sitting next to the tub intermittently squirting shaving cream onto his outstretched hand, I wrote out this list.  I am seriously considering printing it out in bold lettering and tacking it on the wall for everyone to see.

Our Thirteen Commandments

1.  Thou shall check all door locks (this includes bedroom, bathroom, cabinets, refrigerator, closets, drawers, door leading to the garage and the front door).

2.  Thou shall use a quiet, indoor voice.  (This is very difficult as we are all a bunch of loud talkers.)

3.  Thou shall not interfere with Joel’s piles of stuff in his presence.  

4.  Thou shall not sing to Joel-EVER.  

5.  Thou shall not put silverware back into the silverware drawer in Joel’s presence.  

(Seriously, if you make the mistake of breaking commandments 3, 4 and 5, you probably will get hurt.  He does not tolerate these things and will have a meltdown, jump at you like a pro-wrestler, pinch you, bite you, whatever.  It isn’t pretty.  We have learned the hard way.)

6.  Thou shall keep the kitchen stocked with popsicles, sliced cheese, sour cream and cereal.

7.  Thou shall learn to deal with nude gymnastics at all times of the day. 

8.  Thou shall forfeit your blanket if Joel wants it, even if you are in the process of using it.  (Cold?  Go put on a sweater.)

9.  Thou shall not use the computer chair for its intended purpose.  It is for spinning.

10.  Thou shall fast-forward past all the “boring” parts of Sesame Street episodes (the first 20 minutes) and go directly to the Count or Elmo’s World.

11.  Thou shall keep all books, magazines, mail and any other paper  put away or at least out of reach unless you want them to be torn to shreds. (Joel does not descriminate between the electric bill or your expensive college textbook.)  

12.  Thou shall keep all drawing materials, crayons, pens, pencils, markers, etc put away unless you want some modern art on the walls or furniture. 

13.  No small objects are to be left out as Joel puts everything into his mouth.  EVERYTHING.

So, those are just some of the rules we live by here at Casa Our House.  I’m sure other families on the spectrum have their own list of rules of this nature.  It may seem easy for those not living on the spectrum to say, “That’s crazy.  You need to control that child.”  And, while I probably would have shared your opinion years ago, I can safely say, it isn’t as easy as that.  Believe me, we work with Joel every day at home to follow some kind of normal routine and when he is at school, he has trained professionals extending that kind of learning.  It will take years and some of these things will be with us possibly all of his life.  He is a work in progress as are we all.

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Wordy Wednesday: I’ve Got Some Complaining To Do

Okay, so I’m a little irrate right now, but I’m going to try to maintain my cool and keep it reasonable and rational.  I am probably writing about this too soon after the fact which has a way of biting me in the arse and I figure I should get this out here in my safe place before I go full-on grouchy mom and talk to school officials.

*If you, my dear trusted readers, feel that I am making a big deal out of nothing, just let me know and I will honestly take what you say into consideration.  Many of you, my fellow bloggy parents especially, have dealt with these school issues and I seek your advice if you have any to offer.

I mentioned on Joel’s first day of school that he has a new paraprofessional working with him on a daily basis.  While it has taken me time to adjust to this new person (I really loved the woman who worked with him last year), I have tried to embrace her and treat her the same way I always treated Joel’s previous PP which is with the respect that I feel she deserves.  Despite my efforts to be friendly and open, I have felt that maybe (and this is the irrational part, so bear with me) she doesn’t like me so very much.  There.  I said it.  I’ve had people not like me throughout the course of my life for whatever reason and I have learned to trust my instincts.  I’ve tried to ignore those feelings with her and rationalize that maybe she and I are just very different on a personality level and we clash, or whatever.  The point is, and yes, I’m going to get to one, she is a significant player in Joel’s day and her attitude about things can positively and/or negatively affect how his day goes.

For example, last week there was a stomach issue that blazed through a few members of my household which caused some stress and behavioral changes for those who were affected.  Joel was one of them.  Because of this, we were about a minute or two late for school a couple of days, why? because Joel was fighting getting into his car seat.  Now, I know he has to be there at a certain time.  His dad knows this.  But, explaining this to him is where I am having difficulty because of the communication issues.

One of the mornings we were literally a couple of minutes late, the paraprofessional informed me that if we were not there before the bell rang at 8:45, we would have to drive up to the front of the school to drop him off.  I told her that it would not be an issue and busted my butt the rest of the week to make sure he would be there on time, which we were.

This morning, I pulled up to the school at precisely 8:42.  I know this because I was watching the clock like a crazy person because I did not want him to be late.  She was not there.  I waited for about a minute, not wanting to get Joel out of the car seat in case I had to put him back in, thus causing a meltdown just to drive back up to the front of the building and get him out again.  I got out of the car and walked up to the door and peered in through the window to see if I could see her in case she was just running late.  The hallway was empty.  I got back into the car and drove up to the front all the while talking to Joel in the hopes that he would understand me when I said, “Don’t freak out.  We are going to school.  We just have to go in a different door.”  Luckily, he didn’t meltdown.  What he did do was take off his shoes.  So, once I parked up front, I had to put his shoes back on and get him out of the seat.  The second his feet hit the ground, he went running.  I just barely was able to grab his hand and lead him, struggling into the building where his paraprofessional was standing in the office.  Joel ran past her and into the principal’s office where a meeting was taking place.

His paraprofessional picked him up.  He struggled to get out of her arms, which is unusual because when we drop him off at his usual location, he jumps into her arms.  But, now we were in a different environment and he wanted to explore.  So much for the importance of his usual routine.

I explained to her as politely as I could how even this very slight change threw him off, how he took off his shoes in the car and tried to run across the parking lot.  I then asked her just precisely when the bell actually does ring.  She said it rings at 8:45 a.m.  I informed her that I was there before then.  So, what time do I REALLY need to be there to avoid the craziness that this has caused?  She said 8:40 would be a better time.

**Insert mental scream**  Then why didn’t you say 8:40 a.m. last week!  We are literally talking about a two or three minute period!!

I did not say this, of course.  I took a deep breath, said goodbye to my son and walked out to my car.  If you want to get a point across to me, then treat me like an adult, but don’t try to manipulate me in such a way where it affects my son more than it affects me.  I went to my first class of the day and was barely able to concentrate because I was mentally writing this post and also mapping out how we were going to deal with this and also whether or not I might be wrong about something.

Husband and I have talked about the issue and we have decided that he will text message one of the counselors that we trust and stay in contact with during the day and let her know about our concerns for Joel and this somewhat arbitrarily strict adherence to the tardiness policy.  I understand the importance of being on time, but I highly doubt this particular person truly understands the dynamics involved in getting a child like Joel ready for school in the morning.  Yes, he loves school, but that doesn’t mean he isn’t going to one morning not allow me to put a shirt on him or comb his hair or brush his teeth.  Not to mention, the extremely aggravating fight we have been having with him lately about getting into his car seat, which Tardy policy or not, I am not going to put him in the car and drive with him unbuckled.  Forcing him or rushing him to comply only exacerbates the problem.

Like I said, I would highly appreciate and value any words of wisdom or advice.  And, of course, I will keep you all posted as to how this all pans out.

Snip Snip

Well, summer break is quickly approaching it’s end (OMG!) and we are beginning back-to-school preparations.  One of the things on the to-do list is hair cuts for all three of the kids, especially for the boys.  Let’s just say, if this doesn’t happen soon, we are going to have a bunch of Sasquatch hunters camped out in our front yard with telephoto lenses just waiting for one of them to come out the front door for a photo op.

Hair cuts aren’t a problem for Will.  He absolutely loves to get his hair cut.  There is the (nonstop) chatting with the hair stylist, getting to decide on whether or not to go ultra-short or just trim the haystack to continue the Luke Skywalker look he’s been going for lately, the cool spinny chair, the smells and movement of the salon.  All of it.

Joel, on the other hand….  Yikes.

Our littlest guy has never once been to a salon for his own hair cut.  I don’t expect it to happen any time soon.  So, that means he is resigned to having a crazy scarecrow ‘do courtesy of his own mum and dad.  When I’m cutting his hair, I’m not really going for a specific look.  My only goals when cutting his hair are (1) cut his hair and (2) not cut him (or others) with the scissors.

We’ve tried having one of his hold him down while the other one quickly cuts whatever hair is sticking out, but this is dangerous because he will not sit still.  At all.  So, I’ve had to get creative in my approach.

What I do is get Joel interested in a movie or t.v. show and then stand behind him with a pair of scissors and slowly snip away at the hair on the back of his head while he is distracted.  This is extremely hit or miss because he isn’t stupid.  He can hear the scissors and feel me messing with him.   It looks something like this:

Most of the time, he catches onto what I’m up to and starts to run from me.  And, because I am that kind of person who doesn’t want to give up on something I’ve started, this happens:

Once I’ve eventually cut the hair in the back and as much on the sides as I can, I then have to resort to asking Husband to hold Joel down while I cut the rest of the hair on the sides and in the front.  If Joel is especially wiggly, we have to have Maya help hold his hands.  This doesn’t take anywhere near as long as the first part, but it is definitely stressful.  I “look forward” to going through this either this week or sometime next week, depending on how long I procrasinate.

So, fellow Autism parents out there, how do you handle hair cuts and other grooming needs with your little cuties on the Spectrum?  Or, do you have any stories about this you’d like to share?  Also, if anyone on the spectrum is reading this, what worked or does work for you?  I need all the help I can get and any input is appreciated.

 

Wordless Wednesday-ish: The Black Balloon

I was going to write this long review for this fantastic movie, but then I remembered I’m not a movie critic.  I think the trailer will speak for itself.

The Black Balloon.

Let me just say, this movie is the most accurate and heartfelt portrayal of Autism I have seen so far.  Or, maybe I should say this is what Autism looks like in my house.  (If you have Netflix, you can stream it from there.)

playing with knives

It is only just past 10:00 this morning and we have already narrowly avoided serious injury when Joel grabbed two sharp knives from the knife holding device that is normally locked away in a cabinet that was accidently left unlocked, RAN with them to his room and then “played keep away” with us as we risked limbs and eye balls trying to get them from him.  This is what happens when we relax for 20 minutes.  All we need now is a giant elephant and a clown car and we will be able to sell tickets to our own personal circus.  I can almost hear the calliope music and smell the intermingling odors of popcorn and large animal crap.

Is this going to be a fun day or what?

Edit: I thought I might add a little drawing to illustrate the scariness of the situation.  Of course, I’m not quite sure which is worse, Joel running with knives or me trying to illustrate the scene.  Judge for yourself: