a peek inside the brain of bpgisme

If only this would work with Max….  “Bedtime Story”

toothpastefordinner.com

Max wanted to go to bed at 9:30pm as scheduled.  He seemed tired and happy to go.  Instead, once again, just as he faded out and I thought sleep was upon us he started pinching me and laughing and hitting and the next thing I knew he was sitting up playing with his beads in the bed again and JUST WENT TO SLEEP AT 11:30PM.  The only GOOD part?  If I had gotten him to bed at his old usual time (10:30pm) I would have been in there until 12:30am.  Because of the Autism he can go full blast with very little or way too much sleep and you never know which you’ll get.  I thought since school was back in session I would try to push for a slightly earlier bedtime and last night it went great.  Tonight not so much…  Maybe I should try to go for 9pm tomorrow?  What time do normal 10-11 year old kids go to bed anyway?    Marjorie and Ian used to go to bed really early at that age, but I think it had more to do with getting away from Max and having some peace and quiet before going to sleep than any real sense of a strict bedtime.  I never really had to do that with them once Max reached the infamous “regression age” at 2 and a half.  Everyone wanted to escape and have some quiet time.  Myself included.   I mean we all love him dearly, but we all need breaks from him too.  Thank goodness for school days….

PS-  I had to turn off my Rhapsody feed list, by the way…  We discovered that the service can be run on up to three computers on the same account so I allowed Ian to use it when I am not.  I use it pretty rarely and kind of in spurts anyway.  So Ian has been listening to comedians on there and er… some of the titles of the tracks were rather, well…  They would draw the wrong sorts of folks to this site.  In the context of the jokes what they say is fine, you know, but Google can’t distinguish between a word that gives most folks the creeps and the punchline of said joke.  So I turned off the feed for a while.

So, here’s a little bit of this and that about Christmas and the holiday, now that everyone is back on track and doing their usual school and work thing again and I can think.

First of all, I’m going to be posting lots of photos because I was given by Marjorie and Cliff a brand new camera!!!!  It’s a Fujifilm Finepix S700 and it came with a cool case and everything.  I also got a 2gb memory card for it and everything!  Very cool!  I’m in the process of learning how to use it so I’m trying all the settings and messing around with various presets.  I’ve also been carefully trying the stuff in the manual to get to know the camera better.  I never just point and shoot, I always adjust and try different ways to take the same shot.  Fun stuff.

All of the shots I’m posting here have been reduced from the original size of 3072×2304 down to 1536×1152 and reduced in quality too, by 10%, so they can be loaded fairly quickly to the site.  Click each one to see the larger version.

Yesterday was the first day the kids went back to school since the holidays and I took advantage of being outside (in the fog) when Max came home and took lots of pictures and played with all the settings.

As I said before, it was a Think Geek Christmas.  The packages under the tree contained personal soundtrack t-shirts, a 1-Up Mushroom, several giant microbes, Stikfas, t-shirts, a Wi-Fi detector shirt, Japanese keychains and cellphone charms, a Titanium Spork, a 3.5″ digital frame, a Micro Plus 8 in one tool, Japanese capsule toys and lots more.  And Ian got even more Think Geek stuff for his birthday on Christmas Eve.

And, even though I swore we weren’t going to shop at Walmart for Christmas at all this year, we did end up going there in the end, only because time had run out to order anything else (one birthday gift was late and didn’t arrive until the Monday after) and because there wasn’t anything for Max at Think Geek.  We ended up buying something for Marjorie there, a crossbow thing with a Zelda game for her Wii, and some stuff for Owen and Cooper and Mom and so forth…

Max got a cool Handy Manny toy from Marjorie and a cool car transporter truck by Duplo from Grandma and Grandpa and lots of nice clothes and two pairs of shoes and lots of toy cars and strings of beads and other small things.  Nothing really huge….  Two new sets of headphones and a cool CD player with a children’s music CD.  He doesn’t like the CD player, but he loves the headphones.  Go figure. 

I’ve already discussed how Max was after Christmas in my last entry, but on the actual day, this was definitely a different Max than we have ever seen on Christmas day before.  In years past he has sat still for just long enough to open about two or three gifts and then he’s off playing with beads or lining up cars elsewhere in the house.  But this year he stayed right there and wanted to open every package!  He carefully looked through all the stuff Santa brought and he really seemed to enjoy unwrapping the gifts, though he still needed a bit of help with that.  He stayed focused the entire time and them played with everything one all of it was opened.  It wasn’t until the next day he started showing signs of stress and over stimulation.

All in all though, the holiday itself was great.  I think everyone was happy.  At least I hope everyone was happy…  Cliff got a DVD from Marjorie and some coffee from Mom and Marjorie and a cool (very cheap unfortunately) poker set from me and a Maple Story card from me too.  Cliff and I never buy gift for each other at Christmas usually because we do our Christmas at tax time, but this year he got me the new special edition “Dark City” and the latest “X-Files” movie and that new Indiana Jones movie and a cool Glade flameless electric candle thing that I just LOVE.  It flickers like a real candle!  And Mom and Chris got us a new toaster oven and some washcloths and some ribbon candy and they got me a Boba Fett plush doll!

And of course we each got some Christmas money and while mostly the money Cliff and I got we spent on gifts for everyone else, we did manage to spend $60 each on our highly addictive MMORPGs.  Cliff spent his on his Maple Story and I spent mine on Perfect World.  Silly, we know, but hey, it’s okay….  We never get to eat out or go on trips or go to movies or do anything fun.  This is our fun.

But the most fun thing for me, after all of it is said and done and the dust has settled and the tree and trimmings are all stored away again until next year, is my camera.  I love it!

There is nothing as cool or as much fun as a digital camera.

I can’t wait…

…to take pictures….

…of stuff other….

…than just stuff in the house….

…or on the way to Max’s OT…

…and then….

…back again…

…across the bridge over the waterway….

…to home.

We’re planning on going on a little drive in a couple of weeks while the kids are at school, just to take pictures.

I, of course, can’t wait! 

Sorry.  I know the folks who read this expect me to tell all about Christmas and what all happened and relay all the wonderful things everyone gave and were given, but here’s the thing….   I don’t think I’ll really be able to do that until Monday or Tuesday.  See, it’s 4:20am.  I am finally going to be able to hit the hay in just a few minutes, and it’s been this way pretty much every day after Christmas.  Max went into overdrive and stayed there.  The first three days we couldn’t have any lights on the living room.  Max would turn them all off and sit in the dark, playing with his cars.  He was super aggressive, very hyper and completely and totally out of control.  His destruction mode was up and his listening mode was off completely.  We took him to his OT on Friday afternoon and he said it sounds like Max is getting too much stimulation.  Exactly the opposite of what I was afraid it was, so I think it’s something we can fix if we really work hard and get the right help and advice on the problem.  If it had been the other way, as in, not enough stimulation, he would have been the opposite.  Lethargic, passive, clingy, etc.  Anyway, it made for a very painful two weeks.  Thank God school is back in session on Monday.  Whew.  I will go into more detail of Christmas and all later as I said above.  I just wanted to say one more thing before I lie om my crappy bed and attempt to sleep until 8:30 or 9am without sliding off…  Something that has come up during these past two weeks is the acronym “MR”.  If you don’t know, it stands for Mental Retardation.  The term, though derogatory in the outside world, is still used to designate a developmentally delayed person if they fit the criteria in the world of mental health.  MR has been brought up repeatedly in the last two weeks in relation to Max, including by a behavioral psychologist who may end up evaluating Max very soon for emergency CAP.  The possibility of a diagnosis of MR opens up many doors for Max in the mental health world, but there is a stigma around the label and Cliff is in denial.  The problem is, I am with Max more than anyone, and the kids are nearly as much as I am.  We all believe that diagnosis will be no surprise at all if found to be accurate.  And yes, most children with autism are usually paired with an additional illness or disability.  I think I read the most common “side dish” is seizures, but many have MR as well.  Max has begun puberty and thank goodness, so far, no seizures, but the MR thing could very well turn out to be Max’s “side dish” to his own autism.  And I don’t even begin to know what that will mean for all of us.  So anyway, his OT said he can no longer help Max.  He doesn’t think he can provide anything useful for him and he said the very thing that we’ve been saying.  He said we need someone to come in and help us manage Max rather than try to teach or work with him.  We need someone to come in and be a nurse to him, watch his nutrition, his exercise, keep him from hurting anyone…  Someone who can recognize the signs of a melt down and prevent it from happening because that will be their job.  Someone who can give us a much needed break from caring for him every second of his life…  Someone who can actually change a poo diaper FOR me…  And oh man, that would be amazing.  I am so tired.  I just can’t tell you.  Tonight he had a meltdown.  He had turned on the living room TV, and his computer (also in the living room) and his TV in the bedroom and I was playing my game and the cat was wandering around and Ian was playing music in his room and the ceiling fan was on and the air conditioning kept coming on and Max lost control.  He hit and pinched and yelled and fought and I got him calmed down by turning off all the lights and the computers and the TVs and brushed his skin with the old surgical brush his last OT had given us and after a little while, maybe 20 minutes or so, it worked.  I still got hit a few times, but it was nothing like it had been and I held him for a while and combed his hair and he calmed down even more.  He got up finally and went in the bathroom.  I washed his hair and started a bath for him and went back in the living room sat on the couch and cried.  Cliff had stepped in to kiss me goodnight while I was washing Max’s hair.  I don’t know…  I think I’m just so tired and so disillusioned with everything it was all just too much….  I cried and cried.  The kids slipped up beside me and Marjorie asked if I was okay and then the dam burst even more and I cried until I just couldn’t move anymore.  Then Max got out of the bath and played quietly on his computer until bedtime.  I got him snugged in the bed and sat down in the rocker by his bed as is the custom as required by Max and settled in to wait for him to go to sleep.  I have done this his entire life, so of course, he expects it.  But he didn’t actually close his eyes until 4am.  Hours and hours I have sat in there…  If you wonder why I don’t have an outside job, this is it.  And now I am so tired I’m almost too tired to sleep if you know what I mean….  Anyway, enough of this rambling.  I really do need to get to bed.  I have to get everyone up at 8:30 - 9am in the morning to start to get them used to going to school again…  I’ll have to have a nap at some point though….  Wish me luck, please.

Who do they think is going to pay for their increase?  At a time when everyone is struggling to get by.  Worse than that is the fact that they are going to block their website from Road Runner subscribers?  Viacom, get your executives over here to watch my autistic child when he can’t get to his favorite sites online.  Let YOU take the punches and the hitting and the pinches instead of my other children and myself when Max can’t understand why he can’t get to his shows.  This isn’t Time Warner’s problem, this is YOUR problem.  Negotiate or lose us forever.  I side with Time Warner on this one.  And frankly, advertising on your channel that Time Warner is the bad guy is what really put the bad taste in my mouth.  I read the ticker across Noggin’s screen last night and ran to my computer to find out what all that was about.  So you want US, as in the consumers, to pay for your rate increase.  Thanks, but no thanks.  Time Warner, you stick to your guns on this one.  Greed doesn’t always come from the cable company.

Stuff and things!  I need to catch up here but not right now!  Later! 

It was too large to make playable on this page, but here’s a movie I made showing the wonderous and happy Christmas holiday we all had here at the Gardiner house.  I hope yours was just as wonderful!

link to Christmas video

Click to open and play in Windows Media Player or click your other mouse key to save the wmv file to your hard drive.  It is unfortunately nearly 9mbs in size…  I guess that’s all the music…. 

You’ll notice Marjorie always seems to be making a face?  Yes, that’s because SHE REFUSES TO SMILE ON CAMERA.  Drives me crazy.   She always frowns.  She’s done it ever since she was tiny!

I was given a fantastic new camera by Marjorie and Cliff!  I’ll talk about it more later.  As i said before it was a Think Geek Christmas.  About 80% of the gifts under the tree from me and Cliff were from Think Geek.  Thar’s the personal soundtrack shirt Marjorie and Ian both got.  When it came available again I got them without hesitation.  Max actually participated this year and opened his own presents for the first time ever!  Later in the day though, about the time Mom and Chris came, he had meltdown and the overdose of stimulation shut off his good behaviors.  He’s still in overload right now, but his OT plans on seeing him several days this week to help us get through until school starts back up.  (The new worker starts in January.)  Anyway though, I think everyone was happy.  I know I am.  Marjorie got a huge collection of fabrics from Mom so she can start working on her stuffed animals again.  (She’s very good at that!)  And Ian ended up with my old camera and our old DVD player so not only did he do well with presents he made out like a bandit on other stuff!  And Cliff and I spent (too much) money on our online games.  But we both enjoy them so much!  His Maple Story and my Perfect World.  And Alex’s surgery went just fine.  Marjorie delivered the stuff Santa left here for him on Christmas day…

And that’s a wrap.  I gotta do some chores and then get back in Perfect World.  There’s snowmen wars going on at present….  They’re attacking the cities!!!

Okay, so Max and I were having “Max and Mom” time for a while just now….  I sat down with him for about two hours.  Basically until he got bored with me and went back to his computer to watch “Family Guy” clips again.  In the process we watched Christmas epsiodes on Noggin of “Blue’s Clues”, “Max and Ruby” and two of “The Wonder Pets”, the first of which was a “Se-wious”  (Oh god I HATE it when that duck says that) kids’ version of “The Nutcracker” featuring, of course, the music from the ballet by Tchaikovsky, and I found myself tearing up.  Why?  Well, it’s not what you might think.  I have no real fondness for Tchaikovsky one way or the other.  My favorite classical composer is Vivaldi. I have no great love for the tale of the Nutcracker either.  In fact, I remember a special that I think I still have on tape somewhere that was shown on TV as a repeat during the 80’s that starred ol whatshisname um, wait, let me go check Wikipedia….  Baryshnikov!  That was it…  Here’s the page on IMDB.  I never even watched the whole thing.   Ballet was never very interesting to me, but music has always been important to me, so over the years I somehow acquired a cassette tape of the Nutcracker.  I listened to it very rarely, but something happened to change all of that…  A child was born.

Marjorie came into the world in 1990 to a Mom who was seriously not prepared for dealing with a child.  I had no children’s ANYTHING, no children’s books, toys, and no music…  I had heard that classical music is good for children, so I pulled out the Nutcracker and played it every night while I rocked her to sleep, humming along with it.  So, of course, I here I am tonight, some 18 years later getting teary eyed and silly because that itty bitty baby is all grown up and driving her brother and boyfriend over to grandma’s for dinner tonight.  Wow.  How time just zips by….  You blink and everything has changed….  So I sat there, teary eyed and Max came over and sat next to me on the little couch and gave me a big hug and leaned on my arm.  He may not talk and he may not understand everything going on around him, but somehow sometimes, he just seems to instinctively know when Mom needs a hug.

I actually cut back on my Big Fish account and am considering cancelling my Real Arcade account I am enjoying Perfect World so much.  I can’t believe it, but I spent a little bit of money on the game.  Some of my Christmas money and the last of my birthday money that I had been saving.  I am so in love with this game!!!!  I took a short while off from it so far today though because I’m starting to get gamer’s elbow a bit. 

Anyway, so Dad came for a brief visit, and before that Marjorie went off with Mom and Chris to get Marjorie some fabric.  A friend of her’s gave her a really nice sewing machine in a built in cabinet.  She’s working on making room for it over the weekend.  In the process she’s giving Cliff back his old desktop, since she’s got her laptop now.  And because the old desktop now has a wireless connection we’re going to set it up in the bedroom for him.

Christmas is nearly ready…  Just a little bit more to do.  I’ve got some more wrapping to do too.  Plus there’s a package coming at the last minute from Think Geek and an additional package not going to be able to come until after Christmas from Think Geek as well.  (They ran out right after I ordered the item, so I didn’t get it….  It’s on backorder.  It’s for Ian’s birthday, so I can’t reveal it’s identity.) 

I listened to the soundtrack for Charlie Brown Christmas while I worked on Christmas cards and lists and such yesterday so I’m all Christmas’d out right this minute.  Instead Ian and I just spent lunch watching 80’s music videos, because when he got out of the shower he had A Flock of Seagulls hair and to prove my point I showed him a few videos and photos and of course, that led to Talk Talk, and Real Life and so forth….  So, here’s one I remember and used to really like.  It’s a bit much to take unless you’re in a fast, busy mood….

And that’s it for now….  More later….  Maybe.  No promises. 

Unfortunately, I feel like crap and not very inclined to fix them, so please, dear reader, excardon me for my various blunders of the English language in my previous post. 

Anyway, I am sicky poo.  So is Max.  Ian was on Monday.  It’s just a mild cold.  I actually am feeling better this morning than I did last night.  Max had a very bad night though, waking himself coughing and whimpering.  He has a slight fever so I kept him home today.  Judging by Ian (who stayed home from school on Monday) Max should feel better by later in the day.  I actually feel much better now than I did when I got up.  I slept pretty poorly though, so I know I’ll probably have to go back to bed later.  Thank goodness Marjorie is home today.  It is a shame though.  I was going to go shopping with her today.  Just to the grocery store, but she was so excited!  Shopping with Mom!  Always fun!  

The plan for the rest of the Christmas shopping we have to do is a rush to Walmart and then the Dollar store on Friday morning between 7am and 10:30am, because Cliff has to be at work by 11am and Max and Ian get off of school at 1pm for the Christmas holidays.  Yikes!  Talk about last minute!  We ran out of wrapping paper so I still have Chris’ and Dad’s and Carl’s presents to wrap and we have yet to make Nathan’s present yet (he still hasn’t picked up his birthday present yet, super busy and in demand DJ-type guy that he is  :D  ) and we’ve yet to order Alex’s, though we probably won’t see Alex until after Christmas anyway.*  (Ugh….  I ran out of Kleenexs and man, toilet tissue just doesn’t work well… :P  )  Plus stocking stuff and so forth.  I’ve been addressing Christmas cards too and haven’t got them mailed yet but we’ve still got a little time on that.  We could mail them as late as Monday and they should get to the various places before Christmas.  That’s the point anyway, right?  Oh, and I’ve still got to wrap Owen’s Christmas gift and find something for Cooper and then I guess I’ll give those to Mom to take over on Christmas day when they visit everyone.

Too much to do.  But not today.  I feel too yucky today to mess with this stuff.

Max just sort of snorted and turned over in his bed.  I hope he gets lots of sleep.  I know it’ll help him feel better.  In a little while I’ll be able to sleep again.  Right now though I’m waiting for Cliff to return with a few groceries before he goes into work.  Since Max is home for the day we needed a few things for him.  The cupboard is bare here.  Marjorie and I scoured the kitchen last night to see what food was left and frankly, there’s one can of kidney beans (yuck), two packages of spaghetti pasta, a jar of peanut butter and a jar of grape jelly, and lots and lots of sauce and seasoning mixes.  :P  Not much there…. The freezer is even less inspiring.  Most of the food in the freezer has been in there so long it’s bound to taste like THE FREEZER.  But, all will be well soon.  And I am exaggerating just a bit.  I mean there’s also boxes of mashed potato mix in the cabinet and a pork roast Cliff got the other day in the freezer, plus some chicken breast patties which are good in a pinch, but those are for meals so we tend to over look those items when looking for a snack.  We ended up cooking some spaghetti pasta and eating a nice leftover dinner thanks to my saving the last of the sauce from Monday night.  There was just enough for the two of us.

Well, time to do some stuff.  I’m not sure what yet.  I need to get those Christmas cards finished….  Hmm…  Address hunting.  Be vewy vewy qwiet.  I’m address hunting!

*Alex has this awful sinus surgery coming up and darned if it wasn’t scheduled on December 23rd.  :P  That so sucks for him and his family right here at Christmas.  But it’s very quick, he’ll be out the same day, he’ll just be recovering a couple of days afterwards so probably won’t feel much like coming here on Christmas day.  Marjorie will probably go see him though. 

I got a strange phone call on the answering machine and made some calls to Max’s casemanager and the QP in charge of his case and learned more about what’s going on and what I should do.  I am not happy about it, even though they both said I have nothing to worry about and I did the right thing at the time.

This started several months ago.  An incident happened.  It creeped me out.  I went to Max’s case manager who isn’t really just a case manager, she’s also a good friend, and I got some advice from her and she took some notes to make sure she understood everything.  She wanted me to tell the QP everything right away, but I elected to wait a while because I didn’t want anyone to get hurt.  So I waited until I felt okay about it and the subject had come up in conversation and I told everything and explained why I was bothered by what happened.  At this point and for another month or so, all was well.

Then fast forward to today.  I get a mysterious phone call from one of the parties involved asking me to call her back to go over a report she was turning in to the home care management company she now works for who and for whom the other person who is involved in this mess also works for.  We don’t do anything with that particular company.  We have had our case with the same company for many years and I plan on sticking with them as long as possible.  Especially now that Marjorie might be working for them soon.  (She went and filled out the paperwork today.)

So, anyway, I got this weird call and the first thing I did was try to get up with our QP.  He was busy on the phone so I left a message, and then I imediately called Max’s case manager.  She told me that not only do I not have to call the lady back but that if she comes to the house or tries to bother me in any way I am to call the cops!  Holy shit!  She got off the phone with me right then, promised to call right back and called Southeastern.  They in turn told her they would call the woman’s company right then and get back to her.  So she called and told me all of this and again, stressed that I am not to speak to this woman at all and then she explained what the woman is doing is considered harrassment.  Harrassment?!  “What is going on?” I asked.  She said Southeastern would handle it.

!!!

So then Max’s QP calls me back.  I tell him everything that’s happened thus far and he explained that he too would have let it go and let the woman in question off as a one time mistake except that not a month after it happened here, the two ladies in question did the same thing again.  And this time they convinced the client to join them at the other company.  Our QP actually spoke to the company in question and he tried to make sure they don’t fire the two ladies for their clients’ sakes, but at this point the damage has been done and it is out of all of our hands.

Meanwhile, I had no idea all of this drama was going on.  In fact, I don’t think I was supposed to know at all.  Then when one of the ladies involved called here this afternoon and left me that message BAM! I know all and now, of course, I’m worried about it.

I don’t like to hurt people, but they made me terribly uncomfortable.  I hate the “we islanders have to stick together” thing.  It kinda makes me sick to my stomach.  And frankly, if Max didn’t need this care I wouldn’t allow another worker in the house for the rest of my life.  You can’t help but feel violated and uncomfortable.  The same way, I’m assuming that that woman’s CLIENT felt when she had to use our bathroom while her worker and a possible new worker for Max were meeting us in the living room.  In other words, a disabled woman who is a client of one of the ladies came to our house with the ladies for the interview. And that is apparently illegal and I didn’t know it until today.  Now I wish so much that Marjorie could be our worker….  Damn that “can’t be living in the same home” rule!  I can’t trust anyone else.  This all makes me uncomfortable about the entire system.

So now I am worried that these two woman are going to harrass us.  I just want everything to settle down for those two to go away.  Or at least to stay way from us.  I mean Jesus Christ she didn’t even show up when she was scheduled for crying out loud.  Not a phone call, anything….  Then to try and convince me to take Max to another company?  And then to send her friend over with a worker and the woman brought her client?!  It’s not MY fault that they did it.  It’s a natural thing for me to go to Max’s case manager and get advice.  In fact, I went to her to get advice about the very company the ladies were pushing.  After I explained what happened she wanted me to tel the QP right away.  I didn’t though….  I waited until I felt pretty comfortable that she wasn’t going to call any more or anything.  Then I told the QP about it at the case manager’s urgings.

What happened, happened.  It can’t be denyed.  My other children were here and saw it all.  I can’t help but be honest….  It eats at me if I’m not.  Now I hope they will see what they did wrong and not try to bounce this mess off of us.  Both Max’s case manager and our QP tell us not to worry.  Southeastern says they will handle it.

I take back the bad things I said about Southeastern.  They are trying to help us, after all.  They got a little bit upset that we didn’t report the incident right away, but I didn’t realize how wrong it was at the time.  I was just telling Max’s case manager how uncomfortable it made me feel while they were here that day….  Wow…  Makes me tired just thinking about it all.  I just hope these ladies who are in trouble stay away from us and stop calling.  And I honestly hope they don’t lose their jobs over it.  I just would wish that they learned something and never do it again, for their own clients’ sakes.

Ugh.  I gotta go to bed.  What a sour note to end the day on….  I may as well go read the news. 

Before I go take my shower and then have my lunch and then wrap more presents and begin addressing Christmas cards, let me tell you the latest on the Gardiner home front.

First, we had to let Max’s new worker go.  She just wasn’t being consistent enough with the schedule and there were too many conditions to everything to make it all work.  She was very nice and very knowledgeable about sign language and everything so this is a major disappointment to us.  She just works for two many other companies helping too many other people to stay focused on just Max.  In turn she told our Maxim QP that WE weren’t following through and putting too many restrictions on things.  So, last Saturday when our OT canceled the appointment due to a bad cold and fever and I called our worker to let her know and asked her if she wanted to take Max for a walk instead, she said it was too cold (it was 36 degrees at the time) and maybe it would be better to take him for a walk in the afternoon.  I was disappointed, but I understood, and of course since she told me she’s deathly allergic to real Christmas trees she couldn’t come in our house to work with him so what choice did I have?   I asked if she wanted to do something else with him and then I mentioned that the following week I would like for her to take Max to OT without me.  I felt he was comfortable enough with her at this point that there shouldn’t be a problem, but she didn’t want to take him anywhere without me until we had some kind of harness to keep him in his seat belt.  The problem with that though is how long are we going to wait for a harness and where is it going to come from?  WE certainly don’t have the money.  There was a case she had that was going to provide one for that child and Max was going to use it too but then I never heard about it again.  So I realized that she wasn’t going to take him anywhere in her car without me and that was simply NOT going to work.  The whole point of these people coming into our home, intruding on our lives, disrupting our routines is to provide some relief on the parents.  This is not so true with Developmental Therapy were they are actually actively trying to teach the child something.  With Personal Assistant and respite they are only there to give the family a much needed break.  And Max hadn’t unbuckled his seat belt in a while.  It was just the first couple of times we went with her that he did that, probably to test his limits, if you know what I mean….

So, anyway, she said she would call that afternoon and take him for a walk and she never did.  I waited all day.  It did warm right up to close to 60 degrees too.  She had even mentioned taking him to a parade that was going on on Saturday here on the island, but when she got to talking about not taking him anywhere without me I realized that wasn’t going happen, because I had no interest in going to the parade.  I did say Max doesn’t like crowds, but he might enjoy it if she found a safe spot for him.  Ms. Jackson used to take him to stuff like that and had no trouble at all with him.  Mrs. Simmons takes him to stuff all the time on school field trips and he does very well for her too.  But, because there is no way to keep Max from unbuckling his seat belt in her car his new worker wouldn’t take him without also taking me.  Ugh.

So that’s the long winded tale of the ever continuing drama that is Max’s care and management.  Joy.

In other news, Marjorie’s hours have been completely cut for two weeks at Lowes Foods!  She’s not alone though, all the part time employees are getting little or no hours through the holiday season.  It’s just a bad time everywhere, but she was asked if she would be interested in working for Maxim and she’s going to apply on Friday!  She helps me with Max every day and Max is considered one of the lowest functioning autism cases in the county, so they feel she will be able to manage another autiistic child just fine and they desperately need workers out here in Brunswick county at Maxim.  She’ll have a bunch of classes and stuff she’ll need to take, but if she makes it through everything she will be making alot more than she did at the grocery store.  Keep your fingers crossed.

And Ian?  I never seem to talk about Ian much.  He’s usually not got the drama going on that the other two have.  About the only thing happening for Ian right now is that he’s growing at a tremendous rate!!!  He’s literally grown two inches taller in just the last month!!!!  He’s eating like crazy and his voice is changing so we all get a good laugh when he talks.  :D   And he’ll turn 17 on Christmas Eve!  I just can’t believe it!!!

Well, that’s all I have time to run on about right now.  I have to get my shower and eat lunch and then do a pile of chores that are waiting for me….  Some fun, some not so fun. 

And finally, when everything is done, back to Perfect World!!!!!!  Yay!!!!!  I’m actually considering cancelling Real Arcade and Big FIsh I’m enjoying Perfect World so much….