Wednesday, December 11, 2013

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

Tuesday, December 10, 2013

Teaching finances to a HFA

Trying to teach Joe finances continues to be a challenge. Since he drives (and therefore has to put gas in his car) we set him up to have a debit card. I was NOT going to let any child loose with my credit card!

To give credit where it is due, Joe is fantastic about balancing his checkbook. He always records his gas purchases or bank withdrawals perfectly and the only time his checkbook didn't balance it was because he typed the numbers in the calculator wrong.

For car repairs, we usually split the cost. He does work a weekend or two a month and has some income so I don't think having him pay for oil changes or half the price of a new battery is outrageous for the free use of a car!

However, in a continuing effort to help him understand cash flow (as well as financial transactions) I frequently send him out to the store for little things.

We are getting low on Alan's lactose-free milk.
Mom: "Joe, can you run up to the grocery store and pick up some of Alan's milk?"
Joe: "Sure. That is what I'm here for." (I kid you not, that is what he says!)

Joe forgets to tell me we ran out of his favorite mouthwash.
Mom: "You can stop and pick up a few bottles after work tomorrow." (Work = his volunteer positions)
And it is done.

He is remarkably helpful that way.  Most of the time he pays in cash and I reimburse him. Sometimes this means I have to make a special trip to the bank to make sure I have enough cash on hand but DH and I figure that as more money travels through Joe's hands he will get a better understanding of how finances work.


This isn't always the most frugal option for us however. One time he bought a name brand where I would buy the generic and his answer was "but I could afford it!" Sigh. He didn't understand that even though he was giving the cashier money, ultimately we were paying for it.

Sometimes it is a pricier errand and he puts it on his debit card. He gives me the receipt and I transfer the money from our account to his. He really doesn't understand how or why this works but I feel better because I don't feel like I am trying to cheat him out of the money he has earned or been given.

Yesterday he went out to pick up a few things and the total came to about $25 so he decided to use his debit card. Fine. Then he figured that since he was low on money, he would get $40 cash back. I was trying to make him understand that either he needed to subtract $40 from his account and I would transfer $25 or he could subtract $65 and I would give him $25 in cash. Yikes. That got confusing even to me!

Then I had what I thought was a brilliant idea. I would explain fiances to him in terms of colored Legos. I told him my account was the red Legos and his was the blue. He gave 5 blue Legos to the store and I gave him 5 red Legos to pay him back and he was still even because the color of the money (Legos) didn't matter.

That actually seemed to make sense to him. But I couldn't figure out how to explain the $40 cash back. Sigh. Really it was easier teaching him the rules of the road for driving using Matchbox cars.

Wednesday, November 20, 2013

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?

Wednesday, November 13, 2013

My escape has escaped

I've never been into reality TV, non-fiction books or documentaries.  I always joke that I have enough reality in my life and my reading or movie watching is for "escape".  When someone suggests a true book about autism for me to read, I cringe.  I don't want to spend my precious "fun" time reading about that which I am already living.

I've been a stay at home mom for almost 19 years. I've worked part time here and there and volunteered a lot when the kids were younger but for the most part, I have been unemployed since Joe was born.

I always thought I would go back to work as soon as our youngest was in school full time, but when Alan had been kicked out of Sunday School, gymnastics and Kindermusik by the time he was 6 I just stayed home.

For the most part, I haven't regretted it and neither has DH. We often joke that he is in charge of the income and I am in charge of the outgo and they are both equally important. As long as I keep our spending in line, we are able to put aside a little something and still have me stay home.

The last few years I have even had the time, interest and resources to get back into miniatures which has been a blissful escape for me. When I am having a tough day, I put Alan on the bus and head down to the basement to play with my minis. When the afternoon or evening is tough, I know I can escape as soon as both boyz are out of the house the next day. I work on them rarely on weekends -- mainly because I prefer to spend my evenings and weekends with DH which is its own escape.

But ever since Joe graduated in May, I am having to relearn how to be a SAHM.  For the last 12 years both the boyz have been in school almost full time.  This has given me more than enough time to keep the house marginally clean, run errands, work out, read, have an occasional lunch with a friend, do my Facebook and blogging and most important -- work on my minis.

Starting this summer I began to bring projects upstairs and work on them at the kitchen table while keeping an eye on Alan in the yard.  This has helped some, but some of my projects (despite being "miniature") are not very portable.  In addition, all my supplies are in the workroom in the basement.

Joe decided a few months ago that he was going to get back into working on models.  (I almost said "modeling" and I had this sudden flash of Mr. Camera Shy hamming it up for a photographer!) We've been happy that he was doing something other than watching movies.  Because really, how many times can you watch the entire Harry Potter movie series in chronological order?

He has finished two cars and while they aren't what anyone with a distinguishing eye would say are well done, they are helping him follow written directions, improve his hand to eye skills and work on project completion  -- which are all important things.

So what is the downside?  This has put Joe in close proximity to me for large chunks of my day that used to be my escape.  Now add to that my foot surgeries and you have a Mom that really wants to see her 19 yo gainfully employed!!

Calgon take me away ... oh never mind, I can't get my foot wet yet ...

Monday, November 11, 2013

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 ...

Thursday, November 7, 2013

Ouch

This week was my second foot surgery.  I had my right foot done in August, then Alan broke his arm and we had so many things planned (including a wedding) that my left foot surgery got put off until this week.

Both DH and I thought this surgery would be easier than the first in so many ways.  Most importantly, it is not my driving foot so I will not have to rely on Joe to drive me around for six weeks.  But also, we've been through it and know what worked and what didn't.  We are also hoping pretty hard that Alan will not break any bones this time around!

In the hospital waiting for Alan's arm to be set
Unfortunately, recovery hasn't been as smooth as we hoped.  I got up last night to go to the bathroom, got lightheaded and passed out.  It was a less than graceful swoon and I ended up lying in the bathtub with my legs hanging out and the backs of my knees resting on the track for the shower sliding door.  I have some wicked bruises on my back, my left thigh and the backs of both knees.  Ouch.

The "Guard Kitty" didn't do anything to notify DH either!
DH had been sleeping on the couch in the living room so that he could hopefully hear both Alan and myself.  Unfortunately it took him a few minutes to figure out who was pounding on the wall for attention and he naturally assumed it was Alan and went up to talk to him first.
All my craft projects will have to wait

As Joe would say, "On the bright side, we didn't have to call 911 and I was only lying there for about 10 minutes." 

But the bruises are a big ouch at the moment -- almost worse than the surgery site!

Monday, October 28, 2013

Thank goodness for boyz ... except today!

I love my boyz beyond belief -- their autism, not so much -- but just the fact that they are male is awesome!  Most days.

 Most people have an idea before they have children of what boyz or girls are "like" and I am no exception.  I clearly remembering wanting no more than one boy.  I had one brother growing up and several of my cousins and friends had similar family arrangements and they worked pretty smoothly, I thought.

I knew I did not want multiple boyz.  My husband only has a brother and my brother-in-law has two brothers and no sisters and a family we were close to growing up had three boyz and one girl and the stories and memories terrified me.

DH loves to tell the story of his brother giving pointers to the neighborhood boy on the best way to beat up DH.  Then there are the stories of the summer that DH finally caught up in size to his older brother.  World War III is usually used as the analogy and all I can think of is my poor, sainted mother-in-law -- but that is another whole blog post!  I remember going over to the house with the three boyz while I was growing up and it totally morphed my brother.  He was sweet and funny most of the time but we'd go over to their house and he would get into fart contests with the other boyz and all that gross "boy" stuff.  No way.  I had decided that was NOT for me.

But when we started thinking about a family, all I could think about was having a boy.  I had four nieces and no nephews and my brother had died shortly before my wedding and all I could think about was a baby boy.  I wanted a boy!  Everyone always says "you will love the baby no matter what the gender" but I knew I really wanted that boy.  Boyz (plural) still scared me and if I knew my second child was going to be a boy, I probably would have preferred that my first be a girl, but since nothing in life is certain, I just wanted that boy.

Lo and behold, Joe was born and there was much rejoicing.  Both sets of grandparents and mom and dad were all thrilled.

Joe was absolutely the most beautiful baby EVER (and I had numerous strangers come up to me in public to reinforce that belief) but he wasn't always the easiest baby.  It took me a long time to decide to have a second baby.  DH wanted them closer together, but I was thinking 10 years apart was about right!  The thought of two boyz no longer scared me.  I just wanted a "typical" child.  Ha!  Does karma have a heck of a sense of humor, or what?!?!?   At least Alan was a much easier baby!!

So back to why I am thankful for two boyz ...

1.  Boyz are tough.  I have a dear friend that has a daughter Joe's age.  They both got their braces at similar times.  Sweet girl would be in the nurse's office several times a week for Tylenol.  Joe never asked for pain killers.  In two and half years.  Tough kid.  Alan cut his head open and I found out when I found the bloody washcloth he used to try to clean himself up.  Even tougher kid.  Thank goodness for boyz.

2.  Boyz consider shopping to be a chore which is also how I look at it.  I never have to take them shopping to cheer them up!  Thank goodness for boyz.

3.  Boyz' toys are much better than those specifically "for girls".  I hate the color pink and find changing a Barbie's clothes or matching her accessories to be boring.  But building a railroad track?  That is fun!!  Thank goodness for boyz.

4.  Boyz' books are better.  I'd much rather read Percy Jackson or even How to Train your Dragon than The Twilight books any day!!  Thank goodness for boyz.

5.  Boyz are usually lower upkeep.  They will never want their hair highlighted, a pedicure or the latest handbag.  A suit for prom is a lot easier than finding the "right" dress -- although it might cost as much.  In general their clothes cover more surface area, too!!  Car insurance is more for boyz, but a wedding is a lot more.  Thank goodness for boyz.

6.  Drama is definitely lower with boyz.

In case you missed all the clues, I'll spell it out.  I am not a "girlie" girl.  Despite my obsession with miniatures, I don't care for most things "feminine".  I am an engineer by degree.  I love jeans and t-shirts and my boyz.  So why is today different?

Today is the day I cleaned the bathrooms.  Let's face it -- boyz miss.  A lot.  An awful lot.  Yuck.

Thursday, October 24, 2013

The jacket

Some days I just want to cry.  Why does everything have to be a battle? 

It is getting to be cold where I live and I've been trying to get Alan to wear his jacket to school this week. 

Monday and Tuesday I just asked him to put it on and he refused.

Yesterday he got physically aggressive with me (hitting and headbutting me) when I insisted he wear his jacket.  Finally I ended up putting the jacket in his backpack for them to try at school.  Of course, they didn't go out yesterday and the jacket came home in his backpack.

Yesterday afternoon I had the brilliant idea that if he wanted to go outside after school he would have to wear his jacket.  He opted to stay inside and just watch videos.

This morning I tried again.  He grabbed his harness for the bus and I told him I wouldn't put it on until after he put on his jacket.  So he put the jacket in his backpack.

To add insult to injury, he was wearing his jacket when we picked him up from camp Sunday afternoon and they didn't say anything about him resisting.  It obviously fits and there don't seem to be any sensory issues with the material.

I guess if school can't get him to wear it, I just let him be cold?  Truthfully, he is such a tough kiddo he probably isn't terribly cold although he was shivering waiting for the bus on Tuesday and Wednesday.


I'm tired, frustrated and out of ideas.

Wednesday, October 23, 2013

Supposed to be a happy occasion ....

Any fan of Monty Python will undoubtedly get the reference in the title, but for those of you who don't find bizarre British humor funny, here is the clip ...
This past weekend was my brother-in-law's stepson's wedding.  For all intents and purposes, I consider him my nephew that I only met 6 years ago, and I dearly love his new wife.  I have been looking forward to the wedding for some time now.  

For a little background, let me say that Joe went to his uncle's second marriage 6 years ago and had a fantastic time.  He danced up a storm and charmed the whole room.

This most recent wedding was slightly less successful.  Now I won't be telling you "who killed who" (after all, everyone did survive the event!) but it just wasn't as smooth. 

This was a camp weekend and we sent Alan so we wouldn't have to worry about a babysitter, but Joe elected not to work and to attend the wedding instead.  Hindsight being what it is, DH and I should have "encouraged" Joe to work.

The actual wedding was relatively short and the minister did a fabulous job.  Afterwards we went and hung out at my in-laws' house and that was also painless.  So what was the problem, you might ask?

The reception.

We are walking in and I said, "I'd really like to get a picture of the three of us."  (After all, how often does Joe wear a suit?!?!)  Joe's response?  "Don't you have enough pictures of me at home?"  Okay.  He was obviously in "a mood".  He finally agreed to take ONE picture.  Unfortunately, I put my arm around him.  I was told in no uncertain terms to NOT do that.

Sigh.

Then there was the food.  Joe is nowhere close to Alan when it comes to being a picky eater, but there are certain things he will not touch and one of them is cheese (unless it is Parmesan cheese or on a pizza).  Even though he loves potatoes (and has even been known to eat potatoes with some cheese hidden in their depths once or twice) he overheard my nieces discussing how there was cheese in the potatoes.  It wasn't happening.  Then there was the pasta.  The kid LOVES pasta and it was just Pasta Alfredo with broccoli.  He always eats "pasta with white sauce" at home and he likes broccoli (it is one of the few veggies that he usually likes) but oh, no, not combined.  Even when I ended up giving him my leftover roll at the end, he wiped the little dab of Alfredo sauce on his napkin before eating it.  Sigh.

At this point I left our table to go talk with some of DH's cousins.  DH did point out that maybe I was being difficult too.  Probably.  I have often said that the reason Joe and I spark so much is that we are so similar in personality but so different in tastes.

DH did ask Joe the next day why he even wanted to go when he seemed so determined to not have a good time.  Joe's response?  "Well it had been a while since I went to a wedding." 

And it will probably be a VERY long time before he goes to another one!!!!

Wednesday, October 16, 2013

Miss me?

Miss me?? 
Alan -- oh so ready for the cast to be off!!

I have been blissfully absent from blogging for most of the last month.

Most of you probably haven't noticed.  Many of you probably don't care.  Some of you will probably tell me how much you've missed hearing about my antics with the boyz.  Yes, they've had them.  No, I haven't written about them.
My miniature greenhouse (made from a birdcage) is almost done!

Mainly I've been taking time for me. 

Julie. 

Not "Mom" and certainly not "Mom of special needs kiddos". 

A little roombox called "Tea for Two"
Just Julie.

I've been working out -- most weeks at least 3 days!  Considering I only had my surgery 10 weeks ago and the boot has only been off for about 6 weeks, I think that is pretty awesome.  Some days my foot still hurts.  I can't do more than a lunge or two before I have tears in my eyes.  I can't genuflect in church without hanging on to the end of the pew and looking like a klutzy idiot (oh, wait, I AM a klutz -- but let's not discuss the idiot part!!)

Since I tend to like working out first thing after Alan gets on the bus and that was when I usually blogged as well, that has probably been the single biggest contributing factor to my decreased blogging.

the tea cart
I've even lost 3-5 pounds (depending on the day) which is only a tiny fraction of what I probably need to lose (20) but at least my weight is headed in the right direction for the first time in a long time.
A little Southwestern themed roombox I made

I have also been working on my miniatures a lot and have actually finished two projects in the last two weeks and almost finished with my third.  Considering only about 3 weeks ago I was close to having a panic attack that I had too much started and would never finish anything, that is pretty impressive.
Climbing again ...

Alan also got his cast off last Thursday.  He (and we) were pretty miserable for the 24 hours following the procedure (he had severe nausea from the anesthesia and then didn't sleep much that night) but my happy child is back.  He has even done some tree climbing since the cast came off although I think in some ways he misses having the indestructible protection on his arm.
Fat cat

As for Joe, he is still volunteering three days a week and spouting his little gems. 


Diesel is still fat and happy.

Life at the Sparks house is back to normal -- whatever that is!!!!

Monday, September 30, 2013

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!


Thursday, September 19, 2013

When "failing" is good

Joe had his first "real" job interview yesterday and he didn't get the job, but we've changed directions and everyone is happy about that.

Last spring, we had talked to the lead counselor at the special needs camp that he and Alan attend in the hopes of finding a way for Joe to attend camp without wasting a counselor on him.  (DH and I did not want to give up our "kid free" weekends!!)  The counselor knows Joe and when we talked to him he suggested the possibility that they could in essence create a position for him.  The camp folks really came through and late this summer, they hired him as the Assistant Arts & Crafts counselor!  Best of all it is a paying job.  Joe was very excited when he got his first paycheck!!

All decked out and ready to go to "work"
In addition to that, Joe is volunteering one day a week (for 3 hours) at a local hospital.  He also starts today volunteering two days a week (again for 3 hours) at a nursing home and he had been volunteering at a thrift store as well (which does not need him for the rest of September since they are doing an inventory) but he should be able to return there in October.

Any of the three volunteer positions could potentially lead to paid employment and frankly, that is the sort of job where Joe will shine.  He already had a very favorable review at the hospital where he has only been for two months.  I am sure the nursing home and thrift store will quickly realize how helpful and smart Joe is without him having to worry about first impressions. 

Sounds win-win to me!

But back to the failed interview, he had applied for several "bus boy" positions and this interview was with one of the restaurants.  When they called to ask him to come in to interview, the manager told me they were primarily interested in weekends.  I told them about the camp, but according to the manager "we could work around that".

Of course his definition of "working around that" was to have Joe quit his camp job (which he likes a lot) for a job he might not like.  Um, no.  Not going to happen.

So yesterday afternoon his job search woman, Joe and I had a long talk and decided to temporarily abandon his job search. 

This morning Joe came downstairs and informed me that since this was going to be the way of things for awhile he was going to start setting his alarm so that he could be sure to get up on time for his "jobs" (he had been relying on me to wake him up on time). 

I couldn't be happier that he didn't get the "real" job yesterday.

Tuesday, September 17, 2013

Separating Autism from Autistics

Many people believe that you cannot separate autism from autistic people.  They say it no different than gender or race.  Last time I checked, it was still possible to get a sex change operation and Michael Jackson sure tried to change his race.

To me autism and autistic people are very different things.  To me autism is no different than any other neurological disorder.  In many ways, I think autism is a lot like bipolar.  There are some real perks to bipolar for some.  A lot can be accomplished in a manic episode.  But there are some serious minuses as well.  People with bipolar are at a greater risk of suicide.

So I decided to go to the autism expert in my house and I had the following conversation with Joe last week.

Mom: "So, Joe, if someone would come up to you and say 'I really hate autism.' would you think this meant they hated you or some of the things that autism makes you do?"

Joe (AKA Mr. Literal):  "If they said they hated autism, I would think they didn't like some of the things about autism.  Like my friend, Harris -- sometimes he can really annoy me but I still like being friends with him.  And Alan is OK as a brother but it sure would be nice if he could talk like me."

That made a lot of sense to me.

I read a blog awhile back where the mother said that her child was autism and autism was her child.  All I could think was how sad and limiting that is. 

I think my boyz are so much more than their autism.  While some of their personality traits have probably developed in response to having grown up with autism, some are just there.  Alan can't begin to tell a joke, but he has the funniest sense of humor.  Joe genuinely wants to be helpful.  Alan cleans up all the time and has since he was a toddler.  Joe is wise beyond his years but so unbelievably naive.  They are some weird little conundrums!!

When someone says you cannot separate autism from autistics, I want to say that is like saying you cannot separate red from the rainbow.  You can.  Maybe it makes the rainbow less pretty, but then again, if you have too much red it can overwhelm the other colors and make them much harder to see. 

I just want a little better balance in my rainbows.

Thursday, September 12, 2013

My place to vent

Parenting is hard.  Autism parenting is very hard.  Teenage parenting is very hard.  Autistic teenage parenting can be brutal.

This is why I started my blog.  Because sometimes we all need a little support.

Sometimes I vent to my "real" friends on Facebook but mostly I try to keep that light.  I try to only show the humor -- the bizarre pictures of Alan climbing, the funny Joe-isms, the rare cute times when the boys interact, etc.

Before I had my blog, I felt fairly isolated.  I only knew a handful of parents of autistic teenagers and only one other family that had two.  I can't say I've met a lot of parents of autistic teens from my blog, but there are a few.  More importantly many of the parents of the younger kiddos can look at my boyz and hopefully get a glimpse of where their children might be -- although with any luck, their children will far surpass mine!

I also hoped to talk and interact with adult autistics.  That has been the biggest disappointment as so many of them have such one track minds that all they can see is THEIR point of view.  

I am not writing from an adult autistic point of view.  I am writing from a "parent of autistic teenagers" point of view.

I understand that many of them think that hating autism is the same as hating your child.  I disagree with this.

I understand that many of them want to be accepted as they are and do not want a "cure".  I accept that, I just still want a cure for my boyz.

I understand that they are expressing what they felt growing up and what they feel now, but they do NOT have the right to say how my children are feeling.

Autism is a SPECTRUM.  That means what is true for one person is not necessarily true for another.  Just like all neuro-typical individuals are INDIVIDUALS, so all autistic individuals are INDIVIDUALS.

Just because your parents said or did things to you does NOT give you the right to tell me how I am parenting incorrectly.  Just because I say I hate autism does not give you the right to say this means I hate my children.  I NEVER say to them, "You know I really hate your autism."  I might mention when they are in the room ways in which (usually Alan's) autism inconveniences our family but it is always the behaviors that are emphasized and I always show my boys how much I love them.

But mostly this is MY blog.   Many times what I say on here, I say on here so that I do NOT say it in front of them.

This is MY place to vent.  If you want to disagree, feel free, but please be polite and respectful.

Tuesday, September 10, 2013

I never wanted autism

I never wanted autism. 

There I've said it. 

Now I've probably pissed off any adult autistics that actually read my blog and possibly some of the parents.

Still it is true.  When I was pregnant I didn't think "I hope my older son has a hard time making friends.  I really hope my younger son still talks in single words at 15 years old.  I want a family that can't go over to the grandparents' houses because the younger one cannot follow simple rules.  I want to spend every family gathering taking turns with DH sitting outside and watching the younger son climb trees.  I want to still be explaining basic idioms to my 18 year old.  I want to stop taking family vacations when Alan starts having meltdowns on the beach.  I want to stop certain fun family traditions because my 14 year old won't go out in the dark." 

Does anyone think these things?

But as soon as I say "I hate autism" people jump all over me. 

I really find it hard to believe that anyone wants this life.  Don't get me wrong -- if they ever would find a cure, I would not force ANYONE to take it.  I would discuss the options with Joe at length.  I think he would chose to take it, but if he said "no" that would be that.  Of course so much would depend on side effects that even discussing the possibility is sort of foolish.

But I get so frustrated by the "neuro-diversity" crowd that thinks we do not need a cure.  Maybe they don't.  But I do.  I want to unlock the mystery inside of Alan's brain.  He is so cuddly and affectionate and has such an infectious giggle but he also has a blood curdling shriek that I don't understand.  I try.  I come up with all sorts of interpretations, but I just do not know what he wants some days.

Trust me, I get that life isn't fair.  DH and I regularly joke about that.  Most of the time, I laugh about our life.  After all, it is inherently funny to watch some of Alan's climbing activities.  But when he is wrecking our house and trying to climb on the electrical fixtures and the heater because we aren't letting him outside to climb, it is a little less funny.  When he was going through his "poop smearing" phase and we were cleaning his room at least every 24 hours, that was definitely less funny.

I am terrified quite regularly when I think of the future.  I have a child that will need life long care.  What happens when I am not around to provide it?  My older son cannot care for my younger one.  Both DH and I are the youngest in our respective families.  That means all aunts and uncles are older than us.  What happens when Alan is a 30 year old adult and everyone around him is 60+?  He can already overpower me and he is still (marginally) smaller than me.

When I said that Kelli Stapleton did the wrong thing but I wanted to understand it, I was criticized.  Someone said that anyone that thought like that didn't want an autistic child.  That in fact, they wanted a neuro-typical kid.  Um, yes.  Actually I do want a neuro-typical child.  Two of them would be nice.  I love my boys with all my heart and soul, but I don't want them to have all the struggles they do.  If some people believe this makes me a bad parent, then so be it.

I've never claimed to be perfect.  Far from it, as a matter of fact!  The popular expression is "love the sinner, hate the sin."  Well, I love my autistic kids but I hate their autism.  That is just the way it is.

Thursday, September 5, 2013

Not even a small pebble ...

They say people in glass houses shouldn't throw stones, but right now so many of them are still chucking boulders around it isn't funny.

Just a few short days ago, a fellow Autism parent snapped.  Was it right?  Hell no.  Could it happen again?  Most likely.  To me?  God, I hope not.  To someone else I know?  Maybe.

There are so many questions and so many possibilities to our lives and those of our children and yet so many people (especially special needs parents) are still so trapped.  When Alex's mother stabbed him repeatedly earlier this year, so many people were so quick to condemn her.  How can any mother kill her child?  Others tried to be understanding.  She was just dealing with so much.  In turn, these people were vilified by the autism community.  There is no excuse for killing your child. 

No excuse perhaps, but sometimes people snap.

The statement has been made over and over again, "God never gives you more than you can handle."  I happen to disagree with this immensely.  Mental illness throws everything out the window.

If a typical teenaged star athlete commits suicide, does everyone instantly label the parent as bad?  Maybe.  But most likely there was some mental illness that caused the child to lose hope and lose the will to live.  If a mother (or father) of a typical child kills him/her there is instant horror and outrage.  How could he/she be so selfish?  But when a parent arranges a murder-suicide the first assumption is usually (I would hope) "what brought them to this point?"  After all when you try to take your own life as well it isn't so much selfishness as despair.

So many people have never dealt with the intense violence that was a part of Kelli and Issy's life.  Many have never dealt with the crushing choices facing them.  How about living 2.5 hours away from your home and the rest of your family in order to have your child go to the best school?  I am willing to bet not many people could take that one on the chin and keep going as though nothing happened.


Autistic people will say that if you try to justify a crime like this you diminish an adult autistic's life.  I think it is safe to say that Issy's life (and Alex's) were already diminished.  Does that make it right?  Hell no.  Does that make it sad?  Immeasurably.

So before all the haters out there jump on me for excusing or justifying this crime, let me be clear.  I AM NOT!  I am trying to understand.  I just want to keep this from ever happening again.  I wish I had answers.

Maybe this hit me especially hard because both these children were 14 and my Alan just turned 15. 

All I know is I'm not throwing any stones at Kelli ... not even a small pebble.

Wednesday, August 28, 2013

Why me?

Yesterday I had one of those "Why me?" moments.  Every parent of a special needs kiddo has had them.  Heck, I suspect every parent has had them!

That moment when you think, "Why does this crap always happen to me?"

Obviously, Alan broke his arm a little over two weeks ago.  Alan is a climber.  We've kept him inside as much as possible since he had the cast put on in an effort to minimize his climbing.

Yesterday afternoon I heard a loud crash from the basement.  He had attempted to climb the shelves in our storage room.  But those shelves were not meant to hold up a 170 pound kid.

Over the years, he has climbed so many things it isn't funny.  DH has covered many of our pipes and wires in our mostly unfinished basement with plywood in an effort to protect them. 

We have installed grip bars near many of Alan's favorite climbing spots in the basement.  For years, we kept him out of the storage room and the work room with keyed locks but lately he just wasn't climbing where he wasn't supposed to climb ... much.  So we started leaving the doors unlocked.

Then he broke his arm and we started keeping him inside.  Apparently those sensory needs are building and he's started climbing the walls ... literally.

When I was growing up, my mom used to say, "I'd say I was paying for the sins of my youth, but I don't remember having that much fun."

Well, unfortunately, I did have that much fun.  And I'm paying ...

Monday, August 26, 2013

Halfway there

It was two weeks ago today that Alan broke his arm.  Two weeks now that we've been giving him sponge baths (ooooo, is that a treat!)  Two weeks now that we've been dealing with scrapes to our walls and cars.  Two weeks now that we've been trying to limit his climbing.

Surprisingly, it has not been that hard.

Happily perched on his favorite branch!
Okay, it hasn't been a picnic by any stretch of the imagination, but if you had told me three weeks ago that I would NOT be counting the days until the cast comes off, I would have said you were having a drug flashback or something.

Alan has been a trooper.  The first day he kept telling us "clean up" and "take off" and "help" and holding out his arm.  But then he sort of resigned himself to the thing.  We actually have not heard any requests for the cast to come off in at least a week -- which is pretty amazing really.
Climbing with the cast

We kept him inside for 11 days with constant pestering for "outside" and "climb tree".  Finally on Friday we relented and let him climb but told him that he had to climb down instead of jumping.

This worked for about an hour before he decided to go for it and get that sensory feedback that he craves from jumping. 

School tells us pretty much the same thing.  He has been an amazingly good sport about the whole process.

But today I get to call and schedule the removal of that darn thing!  And then I will probably start counting the days ... 

Happy Monday.


Wednesday, August 21, 2013

"I'm Sorry"

I have heard so many times from special needs parents how much they despise the words "I'm sorry" when it comes to their children.  Well, I'm sorry, but I don't get that one.  What would you rather people say?  "Congratulations!"???

There isn't a person alive that thinks when they are pregnant "oh I hope I get a special needs child!"  But that doesn't mean we don't love them all the same.  Now there are amazing people out there that choose to adopt special needs children and all I can say is "Wow!  More power to you!"

But when it comes to a child you gave birth to or that you adopted not knowing their issues, I think "I'm sorry" is a fine thing to say.

A person that says "I'm sorry" isn't saying "I'm sorry that your child was born."  They are merely saying "I'm sorry you have these difficulties."  Some days, I feel sorry for myself, too!  Other days I am pretty thrilled that I don't have typical kids.

Usually when I hear "I'm sorry" it is because I am trying to get some form of accommodation (like no waiting at the doctor's office) so I just say "thank you" and move on.  Occasionally I hear it when I am catching up with an old friend and I am explaining why my 18 yo high school graduate is not looking at colleges.  Then I usually respond with some snarky comeback like "well at least I don't have the tuition payments you have!"

On the other hand I do get tired of people telling me what therapy to use or how I should parent.  I'm sorry, but live at my house for a week and then make your snarky comment about how unhealthy my child eats.  Do you honestly think I don't know that it is unhealthy?

So for all those parents out there that despise "I'm sorry", I'm sorry, I just don't get it.  There are a lot bigger issues out there.

Tuesday, August 20, 2013

Baby steps

Yesterday was "doctor day" in the Sparks household!

First morning after breaking his arm.
Between two previously scheduled "well" visits, a follow up on my foot, a follow up on Alan's arm and a nasty outbreak of poison ivy on Joe, I spent a good bit of time yesterday at the doctor.

The good news is that everyone is on the mend.  Joe got some steroids for his poison ivy, Alan's arm will not have to be reset and I am healing nicely with nice mobility in my toes.  Yay!

At the doctor's office yesterday.
Alan has been surprisingly accepting of the cast.  The first morning he backflipped out of bed and slid down the stairs (cast first), but has been more sedate of late - although he was climbing in the basement stairwell yesterday!  He also decided to do some weird balancing at the doctor's office.

His constant pestering to "go outside" and "climb tree" (two things he had never in the past requested with his talker but had requested relentlessly via talker on his first few days of being housebound) has abated.  He still asks a few times a day and tries the back door for good measure, but we haven't had a single meltdown over his house arrest.  Yay!!

The walking wounded
He also seems to like his new school.  He even asked for me to pack his lunch on Saturday (his way of asking if it is a school day) several times which I took as a promising sign.

He also cooperated with getting x-rays and having the pediatrician listen to his heart (although the ears were NOT happening this year!)

So ... baby steps ...



Tuesday, August 13, 2013

Back to school ... Alan style!

Like so many things he does, Alan did his first day of high school in his own signature style. He started the day by coming down the stairs in his usual fashion and getting on the bus like any other kid. He apparently had a fairly good day at his new school other than not liking that lunch was later than usual.

Later that evening, he was climbing (as usual) in his favorite cherry tree and he jumped out (as usual) and apparently landed bad (most unusual). He started screaming and crying and came inside. We checked him out and DH noticed that his wrists felt different. On his right wrist we could easily feel both bones but on the left, we could only feel one.  He was also allowing us (even encouraging us) to put pressure on his left wrist.

So about 7:40 last night we packed up and headed to the local ER. Once again, this hospital was pretty fantastic with only a few mishaps. They got us out of the waiting room in record time and into the pediatric wing.  They brought in a cool sensory light machine that actually distracted him for a little while.  They went and found trains when we said he liked them.  They even got me some pillows so I could elevate my foot.

Although Alan was NOT happy about being there but we did get him X-rayed after a little struggle and the ER doc said he had a 30 degree angled break in the main bone of the arm. We needed to sedate him to set the bone and first we tried the liquid sedative that he took for his MRI, but we could not convince him to drink it this time.  He fell asleep on his own about 9:45 and the nurses came in to give him his sedative shot about 10:15 but he freaked out and we had a huge wrestling match and the sedative didn't take.

Of course, as DH pointed out, he had learned not to fall asleep at the hospital so he was fighting it pretty hard.  They came up with a second medication (at this point there are so many meds in his system they had to be super careful about drug interactions) and were planning to come in with another one.  We weren't sure how late we were going to be there at this point so I called my sister to come get me (I can't drive because of my foot) and I left a little before midnight.

They came in to give him the second sedative and this seemed to work.  Then they took another X-ray because one of the nurses apparently heard a "grind and pop" during the wrestling match and they were worried we had done more damage. Turns out we set the bone perfectly.  (What is that saying about God protecting fools and small children?)

The orthopedist opted to do an above the elbow cast because otherwise we figured he would pull off a wrist only cast like an uncomfortable sleeve.  Before the orthopedist came in, the nurses told us that it would probably be a splint and he'd get his cast in a couple of days after the swelling went down.  Luckily there was no major swelling and he came home with a plaster cast.  He can't get it wet.  DH could have opted for a fiberglass cast because those can get wet but they can also be picked apart according to the doctor which would be bad with Alan's OCD (the consummate picker!) so he opted for the plaster.

Alan goes back on Monday for another X-ray but right now the plan is to have the cast stay on 4 weeks.  Of course, he is supposed to go to the sedation dentist in 5.5 weeks so that might be taken into consideration.

DH and Alan finally got home about 1:30 am and we all crashed as best we could.  Alan does not like the cast and pulling at the soft edges a lot at first. Of course this will leave the rough plaster exposed so we are trying to stop him. He doesn't like the sling although that would probably take some of the weight off his arm.  He is getting much better although he did fall off his chair in the kitchen when he reached down to pick up a dropped item and the weight of the cast upset his balance.

And that was how we spent the first day of high school ... Alan style!