a peek inside the brain of bpgisme

Max went to bed at around 1am after much struggling and fighting sleep.  I played my game for a little while (the first peace and quiet I had had all day) and then went off to bed.  I had a hard time getting to sleep and didn’t actually fall asleep until 2:30 or 3am.  Then suddenly, at 6:12am exactly.  Max started crying.  All I could figure was that he had a bad dream.  I couldn’t find anything wrong with him physically.  He seemed just fine, so, I turned back on his music and sat with him until he seemed to settle down.  Once he was calm and looked like he might go back to sleep soon I slipped out and climbed back into bed myself.  I had just fallen back to sleep when he started crying again.  So, I ended up exhaustedly sitting on the couch while he watched his favorite TV shows and played with beans.  I kept falling asleep, and Max HATES that, so he drove me off of the couch and into my computer chair.  I fell asleep here though but he didn’t seem to notice. I was actually kind of dozing.  I could hear him just fine.  I noticed he was sounding more and more frustrated at the beans.  A few minutes passed and he came over to me, dragging me to the fridge and trying to get me to give him even more beans (we keep them on top of the fridge) but his little plastic box was half full already so I said “you don’t need more beans, just pick up the ones you dropped on the floor”.  That’s when we had super meltdown.  He came at me and hit me as hard as he could and then head butted me. So, I pushed him back to the living room and showed him the beans on the floor and told him to pick them up.  He picked up two handfuls and burst into tears.  I was trying to calm him down at this point so (plus feeling guilty for yelling at him when he hit me) so I took down one bag of beans and poured a little into the box.  But of course, I didn’t pour him “enough” beans so he got even madder and threw the entire box of beans all over everything.  There were beans all over the place.  Then he head butted me, tried to hit me, and laid down on the couch, pulled his blanket he had dragged from his bedroom over his head and promptly, I mean literally within about two minutes, started snoring.  I swept up the beans into a little pile next to his box, turned down the TV and went back to bed.  Two and a half hours had passed. What the hell was that?

I had to finally tell him goodnight and leave the room.  I’m afraid my presence in there distracts him from sleeping since I now have to sit on the bed with him instead of in a chair.  (He dragged the rocker out and put it by his computer desk.)  Anyway, he’s in there, nestled comfortably in the blankets whimpering because I left the room (even though when I was in there he was kicking me) and he will soon settle down and close his eyes to sleep.  I really wish I could break the “sit with him until he goes to sleep” thing, but I started doing it when he was a little baby and have done so ever since.  If I don’t sit with him he acts hurt and betrayed and may even be mean to me the next day.  But this time I sat in there for an hour and a half waiting for him to fall asleep, so if hes grouchy at me tomorrow because of this then there’s no pleasing him anyway.  I did think I had broken this habit over the last couple of weeks, but now that Ms. Jackson is gone and his summer school has been over for a week I think Max feels very unstable at present and confused.  He’s got to get to sleep now though because we’ve got an eye exam scheduled for him and Ian tomorrow morning in Southport at 10am.

Tomorrow morning Marjorie works a half schedule, but then, after lunch she’s heading off to her first class at BCC.  Amazing!  She drives really great by the way.  She drove Max and me to his OT on Saturday and she really impressed me.  She’s doing great.  I just hope we can hurry up and get the missing paperwork for her grant found and sent off so she can pay back Mom and Chris for this tuition. 

Cliff had promised Max when he left for work this morning that he would bring home a bag of beans, but he forgot, so we got in the van and went up to Food Lion after he got home.  It was only for a few minutes, so I wore what I had been wearing all day, my Steelers superbowl shirt and a pair of old beat up grey pants that are super comfortable.  I didn’t think much about it at the time, but when were standing there in the store I suddenly felt self conscious.  My hair is thinning a bit on the top and going grey at a pretty steady pace, the lighting in there makes my freckles purplish and pop out of my skin, if you know what I mean,  plus my teeth, no matter how much I brush, are horrible.  I try not to show them as much as possible.  So I felt really amazingly ugler than I feel on a regular day to day basis.  The funny thing though was that while I was self conscious about this appearance thing, at the same time I thought to myself, “Why? Who the hell cares what I look like?”  And I just plowed on through the store smiling and being myself and talking to Max who was vocalizing a little (singing maybe?) and touching everything he could and doing that finger flap thing.  Mostly people notice Max, not me anyway.  I guess to most folks I just look tired.  It reminded me of an incident a few years ago though…

I wish I could remember exactly when, but it’s been a number of years ago now, a small older lady stopped me and Max in the lobby of Walmart and spoke to us.  She knew Max was autistic and told me her own son is autistic and looked just like Max at his age.  She smiled as she talked, obviously remembering her own son, and told me he was living in a special home in New York state.  As she spoke you couldn’t help but notice her missing teeth and her shabby clothes.  And she looked at me with such a deep knowledge it almost scared me.  She knew what we were facing then, the day to day struggles, but worse, she knew what we will be facing someday.  The worrisome question of what to do when we can no longer care for him….  Anyway, I thought of that woman and how she shrugged off the man who was with her (and trying to rush her into the store) to finish talking to me.  She didn’t care what anyone thought of her or how she looked.  She saw me as someone at the beginning of something she had lived through and wanted to talk to me.  I don’t think I will ever forget that incident.  And when I look in the mirror I am reminded of it.

Well, I need to get my glass of Wink and head off to bed.  The snoring has begun resonating from Max’s open bedroom door.  Soon more snoring will be resonating from ours. 

Max is still up!  I gotta type quietly.  I’m hoping to get him to sleep as fast as possible so we can get up and take him to OT tomorrow.  Marjorie is driving us!  I might take my camera and see if they will let me take pictures.  I’d like some of the light room too.  Right now though Max is clapping and shouting in the bed and talking to himself. 

And, of course, I’m still bouncing off the wall about Max being 3rd on the priority list!  YAY!!!!!!

By the way, for the second day in a row Max has played with the cable remote and changed to different channels all day.  He stopped on Family Guy and watched the whole episode!

Unfortunately, he keeps playing in the bed.  I just sat with him for another 30 minutes.  Looks like he’s gonna be pushing the 2:45-3am time frame of yesterday.  I gotta get him up at 8am though.  8:30am at the latest in order to get him ready and on time to OT, regardless of how much sleep he gets.  One thing about it though, if he does manage to stay up too late tonight we might hopefully get pushed back on track tomorrow.

Oh my god, oh my god, oh my god, oh my god!  MAX IS NUMBER THREE ON THE PRIORITY LIST FOR CAP!!!!!!!!!!!!

I am so relieved.  That means, in the next batch of slots that come available, Max will very likely get one.  I just can’t believe it.  I cry every time I think about it.  Oh my god.  It’s all gonna be okay after all.  Now there’s just a little more time to wait.  :)   I’ve been patient this long, I can do a few more months.  :)  Yay!  :)  From 65th on the list to 3rd.  Amazing. 

I’ll call Mom about it later and let her know.

YAY!!!!!!!!

(I just edited myself again and unpublished two of my earlier posts.  Now that they are finally getting everything on track again I have to stop complaining.  If things go wrong though I’ll repost them.)  

SPIDER!!!!!!

A HUGE black spider came out from under the wrist pad on my keyboard shelf and ran right across my shirt!!!!!   AAAAAAHHHHIIIEEEE!!!!!  All I could think about besides “Where did it go?” was that MST3k blooper tape called “Poopie!” that I have back there somewhere amongst the boxes and boxes of video tapes Cliff am I have collected since the early 1980’s.

poopieclipspider

Unfortunately, I have now forgotten what I was going to write about in the first place.

Really fast update here.  I’ve been playing Aveyond 1 thanks to Big Fish Games and I love it!  I wanted something to do while waiting for Strong Bad’s game, but now, here’s the day!  Strong Bad’s Cool Game for Attractive People is available in just two minutes!  I am so there!  I won’t be updating for a few days so, later!  :D  I’ll be busy in gamer heaven. 

imaginary or otherwise, I have been known to have cool moments and thus, I am the proud pre-owner of SBCG4AP.  That is, Strong Bad’s Cool Game for Attractive People.  I was going to wait and ask for it for my birthday, but seeing as how we got an unexpected check for $25 today from our insurance company for over paying, and today is also the first day we actually have the real actual release date of the game (August 11th), Cliff insisted I go ahead and preorder it.  So, I did.  Yay! 

He said he’s always buying DVDs and gets to go to movies every now and then and such and I never get to do or buy anything cool, so he thought I should go ahead and get it.  Yay! 

Now I can’t wait until Monday, but we’ve got such painful stuff in the meantime…  Max’s last day of summer school, Max’s shots on Friday, Cliff’s appointment with his doctor on Monday, etc.  Ugh.  But we’ll get through it all.  I’m worried the most about the shots on Friday.

In the meantime, I have to get the packet ready to send to SSA tonight.  Marjorie has one more check stub to get to me but then we can mail it.  I’m asking if our worker can get us a print out of all the payments received for Max last year too to give to the college.  I’m not sure why that matters, but anyway, there you go.  I’ll try and get it handled tomorrow.  Marjorie has to get me that last check stub though.

it was.  Seriously weird.  For all of us except Max.

During the day Marjorie had all kinds of disasters happen related to her signing up for school that I’m not going to go into in detail right now as that’s just about a whole entry or two without getting into all the stuff that happened last night.  It took all afternoon to fix (with the help of her Grandma and Grandpa), and some of it I still need to handle today.  “You don’t have to worry about it,” she said to me a few weeks ago in a not so nice tone. Let’s just say, I should have been worrying her about it anyway.  Nothing like doing everything on the last possible day and THEN finding out you need something I don’t actually have and will have to have mailed to us, because Supplemental Security Income isn’t the same thing as Social Security Income and they don’t send out a yearly statement of how much you received without requesting one first apparently.  *Grumble.*  I have to send off the monthly packet to our SSA case manager anyway, so I’ll write in my usual letter what we need.  There’s some time now to handle it.  And I hope with all my heart that Marjorie’s learned something from this experience.

Marjorie finally got everything handled, at least temporarily, thanks to her Grandpa Chris and her Grandma and Alex who went along with her for moral support.  Much tears were shed and Mom and Chris covered the tuition for now so that when she gets the grant money for tuition later she can pay them back.  And after it was all over, she and Alex went on to do the things that had originally planned for the day with his mom in WIlmington.

Then, Cliff came home from work in terrible pain.  He could barely move.  He had gone to see his doctor at lunchtime, but discovered he’s out of town until Monday.  He didn’t know what to do and the pain kept getting worse.  He tried to get by with just Tylenol, but he couldn’t sit comfortably anywhere, and the pain was getting worse.  He finally went to lie down for a while and got up in even wosre shape than when he got home.  He got a bit scared and decided he needed to go to the hospital.  This was around 8pm.  He went to get ready and I got to thinking about the last time this happened and how scary it was for him to drive home after being in pain for so long.  So, stupid me, I suggested we find out where Marjorie was to see if she would be home shortly and could drive him to the hospital.  So I called her and they were in Leland, on their way back home.  She said she’d come straight home.  She did and they got to hospital around 9pm.  And there they sat.  She called me three times from there, finally, at 11pm deciding, at Cliff’s insistence that she come on back home, get some sleep, and pick him up later.  The emergency room waiting room was packed and some folks had been there for hours and hours.  So, Marjorie came home and went straight to bed.  I couldn’t sleep.  I had to wait for his phone call.  It just never came forever….  I finally couldn’t stand it anymore and at 3am, I called the hospital.  I got a extremely grumpy woman on the line and explained who I was looking for and asked what was talking so long ad what was going on.  She gave me some memorized response and no information.  No information to his WIFE for crying out loud!  I just wanted to know if he was still waiting in the lobby!  So, I told her that he has sleep apnea and if he falls asleep in a chair without his C-PAP machine he could have a stroke.  She took my name and number and said she would pass that on, still speaking nasty to me.  Sure enough though, right after I called, someone finally showed up to help Cliff and he was taken care of and realeased, all in about thirty minutes after I made the call.  I’m not saying for certain that phone call had anything to do with him finally getting out of there, but maybe it did, right? 

At this point, since I knew Marjorie had to drive all the way to Shallotte this morning, I had decided I was really going to push hard for Cliff to take a cab to get home, but once he finally called to ask me to get her up to come get him, no matter how much I tried to get him to do the cab, he just refused.  So I had to wake up Marjorie and send her off to go get him at 3:30am. :X  (I made Ian go with her to keep her awake.  He was still up anyway.)  I really hated it and I told her to remember this in the future when Cliff makes a fuss about having to help her with something inconvenient for him.  “An eye for an eye” and such as that.  I did give her some gas money though so hopefully she’ll be okay.

She just called me and all is well.  :)  She made it there okay and is wide awake and fine.  She said she’s going to take her full lunch break and snooze a bit in the breakroom if she needs to.  (Her phone has a clock alarm.)  And she said she’d call during her break to tell me know how she’s doing.

Cliff on the other hand will probably come home early today.  I’m fully expecting it.  He’s still in incredible pain, but he’s angry at one of his bosses so he’s trying to work throguh the pain.  He had a note from the ER doctor to stay home for the next two days, but he’s determined to push through.  Of course, financially, we need him to push through and work, but there’s a little bit in the bank should he need to leave early.

So, that was the surreal night.  What a mess. Today I have to make two phone calls for Max and get the SSI letter wirtten and ready to mail.  I’m worried about him losing his OT spot on Saturdays thanks to Ms. Jackson quitting.  I’m crossing my fingers something happens soon though.

And now, to finish my morning coffee and go back to bed for a while before it;’s time for Max to come back home….  You know, tomorrow is his last day of summer school, and he doesn’t start regular school until the 25th.  That’s two entire weeks with NOTHING.  No hab-tech, and no summer school and no way to get to OT on Saturdays.  I’m crossing my fingers that Pam can maybe come on Tuesdays and Thursdays the next two weeks just to give Max something to do while we wait for the new hab-tech to start.  Ugh.  I’m tired just talking about it. 

Can’t think about all that now though. To bed I go, since I only got about two hours sleep last night myself. 

Max is still up.  He’s having so much fun playing Nickjr.com radio I haven’t forced him to stop yet.  It’s the first break I’ve had all day.  Whew.

Tomorrow will be a very busy day.  We’ve got an enormous amount of cleaning to do to get ready for Max’s first visit with Pam, the hab-tech who’s coming in this week to help us out until our new official hab-tech steps in.  She’s coming tomorrow night around 6pm and will probably be here an hour or two.  I told her we’re going to leave Max in his natural state so she can see how he really is in his home environment.  He’s regressed a bit since the end of the school year thanks to all the disruptions in service and all, so the potty thing has fallen down and he’s back to not wearing clothes most of the time again.  I try to sit and play with him and work with him, but he just wants to lash out at me.  Without much support from Cliff I’m really on my own right now.  I mean Cliff’s never really helped with Max much other than cooking and the extremely rare times I’ve fallen asleep when no one else was here to help watch him.  I wish he would participate more, but he won’t. There are some things I can’t teach Max and he really needs his daddy to do this, but Cliff just won’t.  Now with Marjorie being promoted to cake decorator and working a full forty hour week it’s really just me and Ian doing all of Max’s care and it’s really even worse now without the outside help we usually get.  I’m anticipating an extremely difficult next two weeks.

Which is why I’d like to slap these Jenny McCarthy types around a bit.  Geez.  You know we did all the stuff you are supposed to do when Max was originally diagnosed. We put him on the special diets, GFCF, etc.  Mom bought him some ridiculously expensive liquid vitamins (that smelled like vomit frankly) that he would instantly throw back up when we could finally hold him down long enough to get it down his throat.  We tried the weird therapies.  We tried everything.  The only things that changed his life were his teachers, picture communication devices, Ms. Jackson, Janice Florio, a mile or two of constant patience and Max’s own computer.  But, he’s still Max.  He still has all his behaviors.  He still stims like crazy when he’s at home and we let him, because hey, he must need to do it.  It sure makes him a calm guy out in the public.  I guess happy at home means happy away from home, at school and OT and everywhere.  There are some behavior things we still need help with and there’s still skills we need to work on, communication, potty, teeth brushing, etc.  But hey, I feel like there’s quite a bright kid in there.  I wish I could show online how good he does with his computer.  In fact, he got mad one day at school last week because the computers at school aren’t fast enough for him.  He’s so used to the one he has here at home.  Anyway, while I know there’s no definitive answer of the cause of autism, there’s a few things floating out there that I completely agree with, and some I don’t.  I don’t agree that immunizations cause autism.  I just don’t.  Logic should show that isn’t the answer.  If it was, it wouldn’t be the worldwide epidemic it’s become.  Changing Max’s diet did not change a thing for him.  None of his behaviors changed.  The only thing that did happen was he quit eating some of the foods he loved because he could taste the difference.  Changing his diet was in large part responsible for making him narrow the foods he would actually eat down to two for about two years.  (Spaghetti and Captain Crunch cereal.  Not together of course.  )  The same thing happened with the special liquid vitamins.  When we tried being sneaky and putting the stuff in his juice, he stopped drinking entirely.  Sensitive just isn’t a strong enough word!

In the end, I can say that I haven’t cured Max’s autism.  I don’t expect it to ever be cured.  But I will not put him on pills or radically change his diet again or subject him to some of the stuff the specialists all tried back in the beginning, because I know he’s one happy kid just the way he is.  All I want is to make sure he can handle his bodily functions and self care, communicate with people who don’t know him, and to learn to read and write or at least type.  (Actually, I know he can already read some.  You should see him on his computer!!!  Using closed captioning on the TV has helped with that too.)  I predict that one day I’ll be hosting his blog and he’ll be able to tell the world what it’s like to have Max’s form of autism.

I guess I’m saying the basics are there.  He’s not brain damaged, his mind works just fine.  He just can’t talk at all and sometimes has troubles with repetative behaviors and does lots of stimming.  And so what?  He’s quite the clown at home and quite the little devil at times too.  He does manage to get his way, one way or another, whether by charm or by mischief.  You can see it in his eyes when he’s up to something.  His teachers, his OTs and Ms. Jackson have all seen it.  I think, if we can get through puberty without any seizures appearing then he’ll be okay.  Someone will have to care for him forever, but he’ll be happy and healthy.  Just make sure his computer is fast enough…  ABout the only thing I am afraid of, outside of the possiblity of seizures at puberty is agression.  It’s already pretty bad.  Has been for years.  Even when’s he’s giving you a hug he’s crushing you.  I’m not sure he’s aware of how strong he really is.

Now Max’s doctor wants us to try giving him Adderall.  She asked us to think about it and we have.  We’ve decided not to.  Try getting any medicine in this child.  And we know the outcome of hiding it in foods.  Plus, Ian started getting headaches on his Adderall.  Her answer was to give him MORE Adderall.  Instead, Ian tried going without it for a week.  He never went back on it.  His headaches are gone, his appetite is back and he’s exactly the same without the meds as with.  Maybe Ian has outgrown his so called ADHD and NLD?  I sure hope so.  We’ll know for certain once school starts.  But I don’t want to risk losing the progresses we have made with Max just to try giving him a medication that may not do anything for him at all.

And hey, Max is supposed to get shots next Friday.  Great, right?  I thought it was only one, but it’s THREE!  Wish us luck.  It’s gonna take an army to hold him down. 

And now, after getting Max put in the bed, talking to Ian, doing something in the bedroom and coming back in here to finish this entry it is exactly 1:16am.  The crappy bed is calling me n a creepy Scooby Doo ghost voice. “Come try to sleep on me without falling off, come try to sleep on me without falling off….”

I am about to admit a fascinating new interest I have that’s been brewing a while.  It’s known as Steampunk, and while I am not so familiar with the fictional works of the modern writers of the genre, I am very intrigued with the creations of the fans of the genre.  There are working Steampunk computers that will just blow your mind, like this one:

Check out more photos of this pc here: www.steampunklab.com

And, if you can read the language, you can go here to learn how it was built: www.mod-planet.com

Anyway, there’s quite a few Steampunk computers and components out there, here’s the links to a few I’ve found over time.

Steampunk Flat-Panel LCD Mod

Steampunk Keyboard Mod

Steampunk Lab (This place looks fascinating.  I may be here a while, Max permitting.)

Brass Goggles (Another site I may be stuck on for a while.)

This site has amazing Steampunk watches and things made by Haruo Suekichi. You have to click on each of the three panels to view them as shown in this screenshot:

Datamancer’s Steampunk Laptop

The Opti-Transcripticon (Some Uru fans might really like this thing!)

Tick Tock: A Steampunk Clock (I am crazy for clocks, all ways have been and this one is so cool I wold love to have one just like it!)

Well, darn.  I’ve got to get up and get to work doing chores.  Ugh.  Maybe I’ll be able to post more links to cool stuff later.  If I can keep Max busy with something else, that is.