...the universe revolves around me

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Another Nervous Breakdown

Posted by April Emery on April 13, 2012 at 4:00 AM Comments comments (0)

So, E-Tech2 is having yet another nervous breakdown because Lego is no longer offering the Lego Recon Heros for sale.

Every time Lego closes a line or part of their website he loses it. As he is crying to his dad on the phone, I hear him say, "Lego is just jerks. Don't they realize that they are just upsetting kids like me?"

Daddy talked him through it...just listened and then distracted him, really. With Gamestar Mechanic. A website where you can create and publish your own computer games.  Good job, Dad.

I hope they don't shut down.

My Magic Masking Tape

Posted by April Emery on March 8, 2012 at 6:55 PM Comments comments (1)

Occassionally, every child struggles with certain boundaries. (More than occassionally if your children are like mine!) Last winter (our first here in Alaska) my kids struggled with staying off the Toyostove (it's an oil heater). My daughter burned her biscuits a couple times when she leaned against it as she huddled in front of it naked after getting out of the bathtub.

Somehow I had the idea to put a masking tape line on the carpet in front of it which they were not allowed to cross. Jocelyn still had a hard time remembering, but from the moment that tape went up, Alex scrupulously stayed on the other side of the line.

Neat trick. Well, that's an Aspie rule-follower for ya.

Now, for the past 6 months, we have been going round and round with Alex at every meal. He always has trouble staying in his chair. But since his dining room chair broke and we replaced it with a folding chair, he is constantly sitting on the back of the chair.

I can't tell you how many times the kid has fallen over, because he was sitting on the back, or had his body contorted through the back, or had the chair partly folded... you get the picture.

Yesterday, exasperated beyond all belief, I had sudden inspiration. I pulled the roll of masking tape out of the door it lives in and tore a foot-long strip off it. I stuck it across the back of his chair, and said, "There, Alex. Maybe now you can remember that THIS IS NOT WHERE YOUR BUTT GOES!!!"

And, would you believe it - I haven't seen his backside up there once since then! He told me at lunch today (when I complimented him for staying in his chair so well) that he really wants to sit up there, but he can't bring himself to sit on that piece of tape because he can't disobey!

Clearly, he can disobey - we've been telling him for 6 months to stay off the back of the chair...

I'm telling you - I have magic masking tape!

Kids Say the ....

Posted by April Emery on July 24, 2011 at 11:54 AM Comments comments (0)

Last night at dinner I say, "I think I'll play some XBox after dinner.  I haven't lounged in 2 days."


Alex says, "Wow, Mom.  That's impressive!" (Without any trace of sarcasm, btw.)

The Propane Tank

Posted by April Emery on July 20, 2011 at 6:20 PM Comments comments (0)

So, today without warning the gas company comes to replace our old propane tank.  Well, it wasn't completely without warning.  They left a note several days ago that it needed to be replaced.  But at the bottom of the letter, they said to contact them to schedule a time to have it done.  So, I wasn't expecting them to just show up.


Needless to say, I had not mentioned this to the kids.  It didn't even occur to me.  Why would it?  Well, they came and got started, knocking on the front door to ensure that I was not currently using the stove.  I thought it might be interesting for the kids to watch them.  So, I said they could see the work if they watched out the schoolroom window.


As soon as it became apparent to Alex what was happening, he came tearing into the living room wanting the camera.  I told him where it was and he went and started taking pictures. 


I thought it was neat that he was interested.  I thought the fact that his wrestling coach was out there (evidently working for them during the summer) was what had him excited.


He was not excited.  He was upset.  He came back to the living room, with tears on his face, exclaming that he did not EVEN know that tanks needed to be replaced.  He thought they were simply refilled when they ran out of propane.  I explained to him that ours was old and would normally just be refilled.  He was still crying so I snuggled him on my lap and asked why he was so upset.  I mean, I knew why...but it's a PROPANE TANK for heaven's sake.


I said, "I didn't even think you knew it was there.  You won't even notice that we have a new one."  To which he replied, "It's not the tank, Mom, it's the memories."


I am thinking, What memories??? when he adds, "What about our tank in Illinois?"  He calmed down when I told him we didn't have propane or a tank in Illinois.  But, it reminded me of the real issue for him.


The fact that things can (and do) change without warning.  The fact that even with warning, he often has no say in what happens. 


And I realized that is the thing that shocks us, that sends us all into a tailspin of grief: change without warning; and our own impotence in the face of that change.


Posted by April Emery on June 8, 2011 at 3:49 AM Comments comments (0)

One of the reasons I've been a bit neglectful of the blog lately is that we have been going through a transition time.  Jocelyn finished her school year, and so she has been home fulltime again.  Despite the fact that this is a nice transition and one we were looking forward to, it has been stressful.  Alex got used to having all my attention and having a limited number of hours with his sister each day while she was in school.  Now she is following him around, pestering him for many more hours - and he has to share my attention with her.


For her part, I think she got used to wanting extra attention from me when she came home from school, so she seems to be even more anxious for it now, even though she sees me much more now.  It doesn't really make logical sense...but there it is.


Not only is there this relational transition going on, but we are needing to rearrange the schoolroom to fit Jocelyn's desk in (we'll be starting school again this coming Monday, this was just a short break; we will do 6 more weeks and then have 5 or 6 off for our summer break) and ANY kind of change is to be avoided AT ALL COST for Alex.


In order to fit Jocelyn's school desk in the room, we need to take the futon couch out.  After mentioning this to the kids, I entered the schoolroom to discover that Alex had frenetically piled every loose item he could find onto the futon.  There was literally a mountain of stuff on the couch.  (I did actually burst out laughing when I saw it!) When I asked, he admitted that he did it "to make the futon so heavy you couldn't move it".  He then ranted that we have always had the futon in the schoolroom (which is true, and not an exaggeration) and it had to stay there.  When he couldn't calm down and stop yelling, I sent him to his room, where he cried and raged for over an hour before I was able to distract him from the futon crisis.


It's so hard for me to know how to approach this sort of thing.  I knew it was gonna make him panic.  I knew a meltdown was extremely probable.  My husband later commented that maybe I should've just moved the thing without warning him.  But, I hate to do that to him.  Yes, he seems to recover from the meltdown (for lack of a better word) faster when things in his environment are altered without his foreknowledge, but I wonder about the long-term effects of not knowing.  Is it going to foster a constant feeling of "impending doom"?


Plus, I just can't bring myself to do that to him.  I guess I figure, I would rather be upfront with him and let him see the change coming so he can prepare himself for it (although, perhaps he is unable).  Maybe this is my own hang-ups talking, but the day I came home to discover that while I was gone my mother (sorry for telling on you Mom, if you are reading this...yes, I forgave you a long time ago) had taken a gift from a friend I had moved away from and placed it in the burn barrel (and yes, lit it) was the day I swore to myself I would NEVER do that to my children (if I ever had any). 


(Okay, okay. I know it was a horrible, ratty old trench coat that made you want to cry when you looked at it.  But to me it was a token of friendship that I wanted to keep for a very long time. And let's not even get into Charity.)  Of course, that oath is coming back to haunt me, because my wonderful, brilliant Aspie son never willingly parts with anything.  He has a broken computer parts collection (thank you very much, dear).  And a fortune cookie fortune collection, for Pete's sake. You get the idea.


The point is, I keep thinking that if I give him plenty of advance warning, he will be able to handle change better.  And it is usually true.  Especially with changes in his routine or his expectations.  But changes to his environment seem to NEVER get easier.  And, maybe I do need to just not tell him the next time something like this is coming down the pike.  Just "damn the torpedos and full speed ahead".  It is so heartrending to listen to him wailing and (his word) "rampaging" around.


Wish I had a solution.                   I mean           ...               other than time.





Aspie Morality

Posted by April Emery on May 2, 2011 at 3:06 PM Comments comments (0)

So, we tried to watch "5 Children and It" the other day.  If you haven't seen it, these English kids go to a country estate during the war.  The main rule is that they may NOT go into the green house.  The adventure begins when they disobey and go into the green house.


Alex was very upset because the children disobeyed.  Each time they entered the green house he got more agitated, until after the third time he asked me to shut off the movie.  I suggested that he go to his room so Jocelyn and I could finish watching it.


But, NO.  He couldn't stand to know that it was on.  As long as it was playing, the kids were still disobeying.  We had to quit watching it.



I hope he retains his strict moral code as he grows older.  The world would be a better place if more of us did.





The A.1. Argument

Posted by April Emery on April 19, 2011 at 4:10 PM Comments comments (1)

Last night Jocelyn, as usual, wanted A.1. on her pork chop.  After I poured it for her, I noticed a funny little thing.  On the bottle, it says, "For best result, refrigerate after opening.  For even better results, hide the bottle in the salad crisper behind a rutabaga so you can hog it all."  I read this to the family, thinking it was pretty clever and funny. 


Alex disagreed.  "Mom, that's just ridiculous," he said.


"That bottle would NOT fit behind a rutabaga.  It would stick out and everyone would still be able to see it."

Getting a couple thing off my chest:

Posted by April Emery on March 31, 2011 at 2:28 AM Comments comments (5)

If you are a parent, you have, undoubtedly at some time or other, been told what you should do, or not do, in regard to your child(ren).  You have been given well-meaning (or maybe not) advice, or asked pointed questions, or basically just been interfered with.  Well, this happens all the more when your child has, for lack of a better term, "problems".


There are many people who told me "He's just a normal boy!" when I first had questions and concerns about Alex's "differences".  (This comment was often made in regards to my worry that he was so hyper - maybe ADHD, I thought.) Even after his official evaluation and diagnosis, I have been told, "he is NOT on the spectrum." by disbelieving people.  (These people usually know someone who has classical autism, and is therefore "lower functioning" than Alex.)  There have also been people who questioned whether or not it was healthy, for us and for him, to even be putting "labels" on him at all.


Being my firstborn, it took me awhile to pick up on some of his...I'll call them "odd tendencies". 

  • He was 4 before I realized that he never made eye contact with anyone, not even me, for more than one second.  It had always been that way, so it didn't jump out at me. 
  • The fact that he was speaking in complete sentences at 16 months I thought was a sign of his great intelligence, mixed of course with the fact that his grandpa is a preacher and his parents are both loquacious (all true, btw). 
  • For a long time, ashamed as I am to admit it, I thought the loud, repetitive noises he always seemed to be making were just to annoy me. 

I could go on and on.  If you live with ASD (Autism Spectrum Disorder), I don't need to.  If you don't live with ASD, it wouldn't help anyway.


I am not writing this entry to convince you of anything.  If, and when, you meet my son, you will draw your own conclusions.  You may see him having a melt down over, what you think is, nothing and surmise that he is (as Michael Savage claimed 99% of autistic kids are) just a disobedient brat who is not disciplined by his lazy parents.  You may see him on a good day and think that his "label" is a fabrication.


Or, maybe I am writing this to convince you.  I still believe what I said will draw your own conclusions.  But, maybe a little "evidence" will help you.  Having spent more time than anyone in the world with my son, I completely agree with the "label" that has been put on him.  I have read at least 25 books about ASDs and countless blogs and websites devoted to the topic.  And while that doesn't make me an expert, living with Alex does. 


We wrestled with whether or not to seek diagnosis.  And, what it came down to was knowing.  Knowledge is power.  It has helped us know what to expect (in a general way) and how to help.  And it enables us to get services for him that would otherwise be unavailable to us.  Let's face it, we live almost 200 miles from these services, and while we did not take a vow of poverty, being missionaries leaves us without extra money.  Hence, our willingness to label our son.  Something that reconfirmed our decision was our realization that, while he was never diagnosed, Corey is sure that he also has Aspergers Syndrome.  We look back at his childhood, especially his teen years, and can only guess how helpful it would've been if he had known.  (And before fully realizing Corey had it, I read Look Me In The Eye, the story of John Elder Robison, who wasn't diagnosed until he was in his 40's (he is more severe than Corey ever was) which also spurred me toward allowing diagnosis.)


So, draw your own conclusions.  But, if you spend much time with him at all, I think you will begin to see what I see: an amazing kid who has some challenges. A kid who, often, can't control the sounds that come out of his mouth*; who can't think of what to speak if he has to look you in the eye at the same time; who can't stop himself from chewing on his fingers, clothes or anything else that is near to hand; a kid who is quite brilliant verbally, but who believes, due to his difficulties, that he is "stupid". You'll also find a kid who sees answers to questions most of the world isn't even asking...yet; who thinks that anything can be invented if you are willing to work at it; and who is so unaware of discrimination, that it doesn't even occur to him to dislike people because they are different.


As Emily Colson says in Dancing With Max, "These children are a gift. [Sometimes, other people] don't see it. But, they are a gift."




*Speaking of "annoying sounds", check out Square 8's fantastic explanation for a shift in paragidm.


Posted by April Emery on March 29, 2011 at 8:15 PM Comments comments (3)

So, one of Alex's new friends has asked him to join the elementary wrestling team.  Corey wrestled when he was a kid, and since Alex wants to we said ok. 


He went to his first practice yesterday.  Afterward, when asked, he said he liked it ok.  I tell him to put his coat on.  Then (like the - probably- smothering mother I am) I lean toward him to help him zip his coat...which, YES, I know he can do it himself!


He immediately drops into a "protection stance". 


It was funny, so I busted out laughing.  (Did he think I was going to just start wrestling with him?!?)  But, it was also cool - showing me that he had already learned something...


...and that his mind was still in wrestling mode.


I wonder how often I am on to the next topic while his mind is still engaged in the last one?  (I find this happens quite frequently with my husband, too...although it may be a male/female thing rather than an Aspie/ADD thing.)  I'm so ADD that sometimes my brain moves on to the next topic before I even catch up.  Yes, living inside this head does get confusing at times!


Well, anyway, I am going to try to pay better attention to where Alex's mind is, and perhaps, as Rick Johnson recommends in The Man Whisperer (yeah, lame title, decent book) I may shout out "new topic" whenever I change subjects just to give the men in my life a fighting chance!

Spinney Fun

Posted by April Emery on March 23, 2011 at 4:10 PM Comments comments (1)

So this morning I hear talking coming from the back room.  (This is the laundry room, pantry, arctic entry and door into the house from the garage - also the only door we use.)  I think either Alex has taken the phone back there and made a phone call, or someone came to the door and I didn't hear them. 


I go back there to discover...Alex has curled up in our new HE washing machine and is talking to himself.


I wonder if the tight space is comforting, or maybe he likes the echo his voice makes in there.  I don't know.  When I ask him, he says, "I was just trying to get some spinney fun out of it." 


YIKES!  I'm so glad it's impossible to shut the door and turn it on by yourself.  I tell you - I can't look away for a minute.