When losing feels like winning

Joe recently learned about betting.  Now he wants to bet us about everything.

"I'll bet you a quarter that our team wins tonight."
"I'll bet you a quarter that Diesel is sleeping on my chair again."

Thank goodness his favorite bet is a quarter!

Last Sunday after we dropped Alan off at camp, he says to me, "I'll bet you a quarter that Alan likes camp."  Oh man, you have no idea how much I wanted to lose this bet!

Drop off was ROUGH!

Dad stayed with Alan and I went to go sign him in and drop off medicines.  The medicine line was ridiculous.  150 special needs folks and only four nurses signing in medicines.  And they had to rewrite every single one.  We got there on the early end of drop off and I stood in line for at least 20 minutes and probably closer to 30.

Meanwhile Alan was crying like his heart was breaking.  He tried to get back in the car and DH locked him out of it.  Then they walked him over to look at the pool and when he expressed an interest in swimming, the counselor took him back to the cabin to put on trunks.  Then DH moves the car and hides.

Poor guy.  Later he told me that he had the harder job (I agree) but that it was just as well we split up like we did because he probably would have snapped and yelled at someone in the medicine line.

When we left Alan was only sniffling and there had been no headbutting or hitting.  His tears are killers though.  He just looks so freaking miserable.

Meanwhile all I can do is wonder what he is thinking.  Does he think we abandoned him?  Does he understand enough to know that we will come back and this isn't forever?

Monday night was so weird.  Joe was working.  DH gets home and says, "What do you want to do?  Go out for dinner?  See a movie?"  Wow.  No sitter required.  We almost had an empty nest.  We could get used to this.  Nope.  We won't.

Several times throughout the week we started and looked around frantically for Alan.  It was definitely weirdly quiet.  For a kid that is essentially non-verbal he is noisy!

It was a productive week.  I got Alan's room painted (I hate painting) and we took Joe out for steaks -- something he loves but of course Captain Picky won't touch.

Alan's one on one counselor was wonderful and communicated well with me -- we exchanged over 100 texts over the course of five days!  She even got him to shower (something we've been wanting for forever) and we were able to carry it over for the last two nights.  He still doesn't like them, but we are at least hopeful!

By Thursday, I was missing my Bug something fierce, though.

It turns out a good time was had by all.

After we got home last night, Joe comes in to see me.  "So did he have a good time at camp?"

Yes, he did and I was so happy to lose this bet that I paid him double!

Guerrilla warfare or why I appreciate teachers

As a mom to special needs kiddos, I guarantee you that I appreciate teachers more than your average parent -- even more than a parent who happens to teach.  I love my boyz but some days (especially Sundays), I tend to count the hours until Alan returns to school.  It is just emotionally draining at times.  I am unbelievably cut off from family and friends.

Even though I have teenagers, I can't leave them alone in the house for even the half hour it would take to run to the grocery store.  I have been known to put a video on for Luke and run up to the grocery store to pick up milk or prescriptions and I am wracked with guilt the entire time.  What if he climbs somewhere he is not supposed to climb?  What if he falls and hurts himself?  What if he opens a window and climbs out on the roof?  The first two have happened repeatedly and although the last one hasn't happened (yet) it is certainly within the realm of possibility.

Now that Joe is driving, I can at least send him to the store, but there are certain things he is not capable of doing.  He won't use our medical flexible spending card.  He certainly will not look for the best deal when it comes to picking out soup, crackers, eggs, apples, etc.  He won't buy any sort of produce unless it is something he will eat.  Even though I have tried to show him how to pick out assorted veggies and meats, he is not comfortable buying them.  Luckily I have some pretty fantastic neighbors who have been known to share an egg or an onion occasionally.

As always, DH helps immeasurably.   But one of us always has to be on "Alan duty".  24/7/365  So when DH has to work on the weekends (it happens when you work for a utility!), or wants an afternoon off to work out, play a game with friends or even go see a movie by himself, that means I am on duty.  Don't get me wrong, I do NOT begrudge him that time, just like he does not begrudge me the time I spend on miniatures during the school days.  We both need that time "away".  But for the person responsible for Alan, it is "duty".

In many ways dealing with Alan is like guerrilla warfare.  According to Wikipedia, "Guerrilla warfare is a form of irregular warfare in which a small group of combatants such as armed civilians or irregulars use military tactics including ambushes, sabotage, raids, petty warfare, hit-and-run tactics, and mobility to fight a larger and less-mobile traditional military."

That pretty much sums it up.  Alan ambushes, sabotages, fights petty battles and is infinitely more mobile.  DH and I are still larger (albeit not for much longer), less-mobile and traditional.

Most of our "battles" are small.  But they are frustrating.  Sunday morning Alan was whiny.  I didn't know if the lack of structure was starting to get to him or what.  Finally in desperation I gave him an ibuprofen early in the afternoon.  Guess what?  He calmed down and was a doll the rest of the day.  Poor kid.  Something was hurting on him, but he couldn't tell me what.  All I had to go on was a whiny kid.  Very frustrating!

But all these little things only highlight why I appreciate teachers.  Teaching is truly a vocation.  At the start of summer vacation, I am sitting here appreciating his teachers every moment.

Our monsoon

Everyone has heard the expression "It never rains, but it pours."  Last week, we had a figurative monsoon.

Monday (St. Patrick's Day) was the day we started ripping out our kitchen.  Yay!  We've been looking forward to this for months -- or in my case, years!

So the weekend before was supposed to be a double camp weekend for the boyz.  This was going to be perfect.  We could move the kitchen table, etc. into the dining room and buy some last minute kitchen things we've been wanting to shop for together (new chairs, dishes, faucet, etc.) while we had the house to ourselves.  We were also going to go over to my parents for a belated birthday celebration (remember it snowed then) as well as St. Pat's dinner.  My mom loves to host things and it just doesn't work at her house with Alan so this was going to be a wonderful relaxing, ADULT weekend.

Friday afternoon

Friday morning Alan gets up to go to school and five minutes before the bus is scheduled to come has explosive diarrhea.  Now with Alan, this could mean he is sick or it could mean he got too much dairy in the previous few days (he's lactose intolerant).  I kept him home to be safe and he seemed a little sluggish at first but by early afternoon he was back to his typical self.  I told myself we had just finished off some Cookies & Cream Pop-tarts and went ahead and packed for camp.

When I dropped him off, I told his buddy what had happened (I don't believe in trying to sneak something like that by them).  I knew that Alan technically should not be at camp (it had been less than 24 hours since he had diarrhea) but he didn't SEEM sick.  In fact, he heard me say "camp" earlier in the day and repeated it several times which is usually a positive thing.  He doesn't say "yes", he just repeats the words if that is what he wants.

DH and I grabbed a late dinner Friday night and watched a movie.  I talked to the nurse at camp Saturday morning (about something different) and she said Alan was doing fine -- eating breakfast, etc.  It seemed like the crisis had been averted.  We ran errands, had some beer to celebrate St. Pat's and went over to my parents' house.  About a half hour after we got there, I got a call from the director of camp to say that Alan was just lying around and he hadn't eaten any lunch or dinner.  Great.

So we went to pick him up early.  He still didn't seem "sick", but he wasn't exactly "right" either.  Shortly after we got home, I got sick.  I didn't have any of the really nasty stuff, I was just weak, shaky and NOT hungry (all I ate all day Sunday was a granola bar).  Then Sunday night on the way home from camp, Joe puked all over his car while driving.  My sainted hubby cleaned that up while Joe and I slept.  Luckily by then Alan seemed back to normal.

Monday morning I struggled to vertical long enough to let the contractor in and drive Alan to day camp (it was his spring break but I had signed him up for a day camp knowing this was close to kitchen time) and then came home and slept some more. 

By Monday afternoon I felt better.  When I picked Alan up, one of the staff stopped me to tell me about the college option for Joe.  We got the paperwork on Tuesday, had the tour on Wednesday, filled out the paperwork on Thursday and submitted it on Friday.

Joe was FANTASTIC about filling out most of the paperwork himself.

Meanwhile, the kitchen went from this ...

to this ...

to this ...

I'm exhausted just writing all this, so hopefully you have a sense of our monsoon from last week.  At least this week is calling for calmer weather ... and the installation of new cabinets!

"You mean that happy child?"

Anyone who has watch the original Toy Story movie more than once (as most parents can claim) will get the title reference, but in case you live in a bubble, have girls or have just gone several years without seeing the fabulous, first Disney-Pixar collaboration, I will explain.

There is a scene where Sid, the horrible middle school boy next door, is plotting to blow up one of his toys and he is laughing maniacally at the destruction he is about to inflict.  The toys are trying to explain to newcomer Buzz Lightyear that Sid is basically the scourge of the neighborhood and Buzz sees him laughing through binoculars and asks, "You mean that happy child?"

Alan has the world's cutest giggle and frequently laughs to himself for no apparent reason.  That said, some times it takes on a bit of a maniacal quality that makes DH or I turn to the other and say, "You mean that happy child?"

I don't know if it is the fact that we recently put up the Christmas tree and Alan is excited about the holidays or if he is just outgrowing his meds or if it is because it has been too cold lately for him to go outside without shoes, but Alan has been incredibly moody lately.  One minute he is laughing maniacally and the next he is screaming and hitting and trying to climb on the fireplace mantle.  This past weekend I captured this period of giggles and an hour later he was in time out.  Sigh.

This kid will be the death of me!  I think it is time for me to go play with my minis.

List of thanksgiving

I am thankful this month, I just decided not to bore my Facebook friends by posting things daily.  Not that I'm bored reading the thankfulness posts that my friends write -- I actually enjoy them.  Who knows why I do what I do, but that is the way of the world.  So in no particular order, here are 25 things I for which I am thankful ...

#3 My miniature Thanksgiving meal

1.  My husband.  OK, I lied about no particular order.  This is always number 1 for me.

2.  The boyz.  They are quirky, weird, stubborn, funny and sweet.  Although I wish they did not have autism, I still am glad I have them.  They have improved me as a person.

#2 My crazy kids

3.  My minis.  Having a hobby really makes life more beautiful.

4.  My kitty.  Diesel frequently makes me laugh and loves to be petted.  He isn't into being held, but that is OK.  He still makes me feel loved.

#6 Me with my sisters

5.  My nieces.  I have four smart, beautiful and just plain nice nieces.  Although I am still glad I had boyz, I do love watching these four grow into wonderful young ladies.

6.  My sisters.  I have two fantastic sisters.  The one in town frequently watches the boyz and the one out of town lends an amazing amount of moral support.

7.  My in-laws.  I have the best in-laws in the world.  Although they do not always agree with our choices, they respect them and again provide an amazing amount of moral support.

My inlaws

8.  My parents.  I do love them even when they drive me crazy.  They have given me a wonderful blueprint for marriage and faith.

9.  My faith.  Although I sometimes question what God has given me, I do know he is there to help.

My parents

10.  Friends.  I have some fantastic girlfriends (and guy friends) from all aspects of my life and they mean more to me than they will ever know.


11.  Our country.  I live in a wonderful country.  Although I hate "politics" I respect and appreciate the military and our freedom.

12.  Did I mention my husband?

13.  Doctors and modern medicine.  Although the cause of autism has not been pinpointed (personally I believe there are multiple causes), I cannot imagine my life without the boys' medications and their doctors. 

14.  Air conditioning.  Even though I am not using it at the moment, I would not survive a summer without air conditioning!

15.  Books.  There is nothing better than escaping into a good book.

16.  Movies.  Except possibly watching a good movie.

17.  My neighbors.  After the hateful letter that grandmother in Canada received, I am once again thankful that no one has ever done anything remotely that mean to me.

18.  My health.  I hear so many people that have physical aches and pains.  While my feet might not be pain free yet, they are on the way and my "problem" could be fixed.

19.  Chocolate.  'Nuff said.

20.  Food.  Maybe this is silly, but I am thankful that food is so plentiful that I have a weight problem.  I much prefer this to the alternative.  I still don't think I can be thankful for exercise but maybe someday ...

21.  I am very thankful my left foot healed a lot faster than my right foot!

22.  Schools.  The boyz have been in every style school imaginable (except homeschool) and without fail we have had some amazing teachers.  Many I am still thrilled to call my friends.

23.  Respite providers.  We try to have at least one date night a month and without some of the amazing ladies I've met, this would not be possible.

24.  Social networks.  I can't believe all the people I have met via Facebook and Google+.  I have also reconnected to a bunch of old friends.  All I have to do is turn on my computer in the morning and I have a bunch of friends to see.

25.  And last but not least, my husband.  He is my best friend and a wonderful dad.

So what are you thankful for this month?

Why the world revolves around Joe ...

The world revolves around Joe.  The world may not be aware of that yet, but it is definitely true.  For a kid who can be so helpful, he just cannot look at things from another person's point of view.  In that way he is a lot like a cat.

This morning Joe asks DH, "Do you know what the best time is to start a movie that Alan likes to watch start to finish?" 

From the other room I'm thinking, "Duh, right after he gets home from school." 

DH said, "I don't know.  What is the best time?" 

Joe's response?  "Right after he gets on the bus to go to school because then I can stop and start it whenever I want." 

Sigh.

As a family we tend to drink from Tervis Tumblers.  They allow us to keep track of whose drink is whose (since we all take them all over the house), leave very little marks on the furniture and allow for minimal spilling during the inevitable upset.  I usually use one of the lids like what is shown on the left (mainly because I prefer to use a straw) while Joe (and DH) tend to use the style on the right. 

When I came home from surgery, DH had washed my cup and was getting out a fresh one and grabbed one of the lids like is shown on the right but knowing I like straws, also got me a straw. 

Joe observed my cup last night at dinner and said, "You know you can drink out of those lids and you don't need a straw." 

Mom: "But I prefer using a straw." 

Joe: "But you don't need one."

Mom: "I know."  He just looked at me blankly.

Sigh.

Joe asked for me to make some hard boiled eggs this morning.  To be fair, he actually asked me to teach him how to make them.  As a family we don't eat a lot of eggs, except for Joe who usually eats two every day.  If left to his own devices, he would eat a half dozen eggs a day, but we set the limit early.  And once there is a rule, it is usually followed. 

DH had stopped at the store and picked up 18 eggs and we had about 6 in the refrigerator.  I told Joe we were going to make the 18 eggs into hard boiled eggs and save the others for whatever. 

Joe asks, "Like to cook other ways?"

Mom: "No, I was thinking more for if we need them for cooking other things."

Joe: "Like fried or scrambled eggs?"

Mom: "No, like a cake or pie or meatloaf or whatever."

Joe: "But I can still use them for fried or scrambled if I want those, right?"

Sigh. 

He's been trying to help out since my second surgery (I am doing much better, btw) and several times a day we hear about how Alan should have learned this or that by now.  I'll get right on that, kid.  After all, we haven't been trying to teach him those things for the last 15 years we've just been skating by.

The world does revolve around Joe.  We just haven't been able to inform the whole world.  I guess I better get on that, too ...

The status quo is nice ...

It's easy to see how the cast has gotten dirty!

Things have been quiet around the Sparks household lately but you won't hear much complaining either!

Unfortunately Alan still has his cast mostly on (I had to cut off the part that covered his palm as it was broken and snagging on things) but we opted to not take it off at the 4-5 week point.  We all knew (including the doctor) that a splint would not stay on.  Now the cast is scheduled to come off at just over 8 weeks from when it went on.  The cast itself is beyond disgusting.  The teenage boy who hasn't had a real bath in over 6 weeks is pretty gross too.  The walls have scratches everywhere from the cast.  I really had not planned on repainting the whole house in spring, but it is looking like there will either be massive touch-ups or new colors in our future.

We do now have good communication with Alan's aide.  Our biggest concern when we started at his new school seemed to be the lack of communication (something at which his teacher of the last two years excelled!!!) but we now have a communication notebook that goes back and forth.  It seems a bit archaic after the e-mails of the last few years, but it is consistent and informative and that is all that is required.

The branches of a Bradford pear are so soft he can rip them off!

Joe is still volunteering at two different places but one of his days at the nursing home was cut.  This is probably because his job coach is having his own hours cut by the government shutdown.  But as DH's job is not in danger from the shutdown, it is hard to complain that Joe's volunteer hours are being cut.

A miniature chandelier I made this month

DH and I have been keeping busy by working out and trying to eat healthier.  We both know we are larger than we are supposed to be and periodically one or the other of us tries to be good but we both know that we have the best results when we are in sync with each other.  We've been using www.myfitnesspal.com and it has actually been sort of fun.  However, I will not be writing about workouts or diets other than in passing because I usually find those rather boring to read.  Of course there are always exceptions but if I am not interested in reading about it, I'm not going to write about it!

I've been reading more (although nothing intellectual -- I read to escape my life!) and trying to snag a little time to work on my minis.  I haven't even been reading all the blogs I used to read although I'm trying to make time for favorites.

DH and I also got to have a movie date night this past weekend and saw Lee Child's The Butler.  I highly recommend it for everyone.  It is truly a powerful story while still being humorous and (it seemed) historically accurate.  Of course halfway through the first scene with Ronald Reagan (played by Alan Rickman) DH leans over and says "It's hard to see Snape as president" and I had to work pretty hard to not giggle through the rest of his scenes.

Alan has conquered a few new trees with his cast, but otherwise it is just the status quo around here ... and that is nice!

Squirrel!!

Poor Joe had his wisdom teeth removed last Friday.  He handled it like a trooper.  He came out of the anesthesia very quickly and was alert enough to want to go swimming that afternoon.  He took a grand total of 2 pain pills (although a fair amount of ibuprofen!)  Most kids would have milked it for all it was worth, but Joe voluntarily resumed most of his chores the evening of his surgery.

The biggest hardship for him has been the "no crunchy foods" rule.  This kid loves his pretzels and popcorn!

I thought the promise of all the pudding and ice cream he could eat on the first day would be appealing to him, but he sadly informed me that what he really wanted was a hamburger.

Pudding is a huge favorite in our house, though!  Because of poor lactose intolerant Alan, I had to take to storing it in the basement and only bringing up 4 little cups at a time or else he would eat it until he had lower end problems.

Joe was helpful enough to go downstairs and bring up a couple of packages and put them in the pantry.

On Saturday, he went into the pantry to have some and snapped the two attached cups apart and Alan leaped off the couch.  It was obvious he recognized the sound and like any well trained animal he went immediately "on point".

DH said it reminded him of Dug from the movie Up.  "Squirrel!!!"  Yep.

So what's Alan been up to?

It may seem that I've been overly preoccupied with Joe lately.  In a big part, it has been because I see so much of him every day.  He is not working yet (please God, let that happen soon!) and therefore I think of him a lot.  My last few blogs were about Father's Day (and after all, Joe is the one who first made us parents) and the cats (and Joe was the one who really wanted both Misty and Diesel) and so I really haven't said much about Alan -- although I did arrange a funny collection of his climbing pictures on Facebook!

But Alan has actually been having a very good summer.  His first week was rough.  Despite having our back to school "conversation" that made me so happy, his first week of summer school had some difficult hellish afternoons.

A big part of it was just the different schedule.  He used to get home from school around 4 pm.  We eat early around here so he could have a snack and easily make it to dinner time.  But now he was getting home at 12:30.  Uh oh!  That didn't cut it.  He actually had to eat some healthy stuff or play or something to pass the time.  He spent the first four days sitting less than three feet away from me saying "medicine, medicine, medicine" until I thought I would lose it.

Unfortunately this picture wasn't zoomed.  This is how close he would sit to me -- ALL afternoon!

After Alan figured out the schedule, he has practically been my dream child.  He has been doing amazingly well at school, too.  He is really getting the hang of his school issued iPad with the communication program Go Talk Now.

When he wanted to watch his videos, he used to sit in front of the TV holding the DVD box in his hand and just bellow "downstairs" (when he was upstairs) and "blue ball" (when he was in the basement -- long story!)  Of course he never (or rarely) watched TV on the main floor.  Figures.

After a little work he now goes and gets his talker (what we call the school issued iPad) and proceeds to press the buttons so that he tells us what video he wants to watch -- and NO bellowing.  He is even doing this for the babysitter and when we had company over.  The best was when he tracked down both of us (on different occasions) when we were nowhere near the talker and handed it to us.  Success!!!!

And this is how he gets out of bed in the morning.

For those that do not know, Alan has apraxia (an oral motor planning problem) so that when he wants to say something, that isn't always what comes out of his mouth.  I knew this, but it has been sort of awe-inspiring to see the way the GTN has improved his ability to communicate and really cut down on the screaming.

Some very clear examples are the time he verbally asked for a cherry pop-tart but typed out blueberry on the talker.  I gave him the blueberry and he took it without a fuss.  If he had truly wanted the cherry, this would have been a time to pitch a fit, but he happily accepted the blueberry.

And just this afternoon he asked for The Star of Christmas DVD (a Veggie Tales movie) verbally, but I waited until he had typed in on the talker and what he really wanted to watch was Thomas' Ultimate Christmas.  So here were two very obvious times that would have caused stress in the house if we had listened to what he said but by using the talker, we bypassed the difficulty.

Now we just have to move him into abstract concepts.  OK, that might be a bit down the road.

Autism and Violence

I have debated over and over in my mind what if anything I should say about Sandy Hook. The idea that the gunman might have had autism is a scary thing.  While Alan can occasionally be violent, it isn't a calculated kind of violent.  Joe, on the other hand, could perceivably have be able to plan out something like that, but I know he wouldn't and here is a story that shows why.

Saturday we were talking about what we should do to get into the Christmas spirit and we  discussed watching a Christmas movie.  While Joe will watch any of the Santa Clause movies or The Polar Express by himself, the "classics" he only watch when we are watching them.  DH and I were going to put on It's a Wonderful Life and Joe asked if he had ever seen it.  I told him that he watched part of it one year with us, but seemed to grow bored (probably too subtle) but he still expressed curiosity and asked what it was about.  I told him it was the story of a man who was having a very bad day near Christmas and contemplated suicide but an angel comes down and shows him all the good things about his life.

Joe's response?

"He committed suicide?!?"

Me:  "No, he just thought about it and the angel came to show him how wonderful his life really was and all the reasons he had to live."

Joe:  "So the angel saved him?"

Me:  "Yes.  It is really a happy movie in the end because it shows how wonderful the man's life really had been."

Joe:  "OK, but suicide is just so final!  Can we watch A Christmas Story instead?"

Ah, my gentle giant.  Although my son towers over me in height and outweighs me by 50 pounds, he is such a gentle kid and I am so grateful.  That said there are so many parents that have to deal with the horrific aspects of mental illness.  This article (I am Adam Lanza's Mother) shows the "other side."  Thank you Lord that I only have to explain things to Joe over and over.