TBT -- More Monkey Pictures

Welcome to Throwback Thursday -- blog style!  This post originally ran on December 13, 2012.  Here you can see why we finished our basement the way we did!

More Monkey Pictures

As promised ... more Alan monkey pictures!

See the plywood on the left side?  That is to protect
wires and copper tubing that he was trying to
use to climb.  Thank goodness DH is handy!

scaling the support pole ...
the kid has "monkey toes"

Climbing up the basement banister
Note it is now a 2"x4" because he
broke the original banister

I love that he does this with a DVD box in
his hand.  He can go all the way from
the basement to the main floor without
touching the actual stairs!

trying to climb through the deck stairs
... he didn't fit!

Squeezing into a cubby in the basement

Another tree he likes to climb at his
aunt's house ... several people
observed that the statue is probably
watching over him!

The kid's flexibility is amazing!

My BIL commented that he looks like the
vulture on Snoopy's doghouse!

More balance beam work

High up in the tree

He had been trying to climb the shelves in his closet.
Note: the bottom left clothes bar has already been
removed ... so have the closet doors but that was
years before!

Somehow he managed to shimmy up on the shelf

crawling across for variety

not sure how he got up there in the first place

oh, maybe like this!

Doesn't everyone relax on top of the monkey bars?

  

just hanging out

Inside he also resorts to bed burrowing

Stair diving ... headfirst on his back!

Hiding in "the tunnel" as he calls it

TBT - What Might Have Been

Here is my version of Throw Back Thursday -- blog style!  (Or TBT-BS as I like to call it!)

This post originally appeared January 8, 2013 and it is still true today.

What Might Have Been

Most of the time I do not have an inferiority complex about staying home.  I have a college degree and I always thought I would go back to work in my chosen field after Alan was in school.  That said, both DH and I really wanted one of us to stay home when the boys were young.  As I had worked fewer years than DH and made less money there was never any debate about which of us would stay home.  I have never felt that DH looks down on me for staying home.  On the contrary, he has always been very supportive and occasionally jealous.  Sometimes I get jealous that he "gets" to go to work because the boys can stress me out but other days, I realize I am lucky because I get to work on my hobbies or go out to lunch with friends or whatever.  So overall we have a good balance, I think.

Then something happens ... in this case my Dad invited me to join LinkedIn.  This is a professional network and as I am not working in a profession I resisted for a long time. Then a fellow hobbyist invited me to join her professional network and I accepted.  So naturally I was curious as to what had happened to my fellow classmates.  OK, now I have a bit of an inferiority complex.  Actually it is less that than the jealousy of how my life might have been.  If I hadn't had two special needs kids would I now be manager of this or senior director of that?  Maybe.  But I might also be divorced as the boys' problems have definitely brought DH and I much closer.  We really have to pull together at times in order to survive.

I read this blog recently (Autism Strains Yet Strengthens a Marriage) and totally understood it.  Yet while reading all the comments below the article I was appalled.  People actually made comments that hinted that these people were living in Hollywood.  They never said their marriage was perfect and nor would I say that about mine.  But the title alone says a lot.  Raising special needs children is a strain but if you work together it can also strengthen a marriage.  But (and this is huge) it takes two people who are committed to making it work.  It can be hard work but with a sense of humor and a heck of a lot of stubbornness, it can happen. 

Sometimes DH and I like to joke that we could never get divorced because we would spend way too much money in a custody battle -- only in our case we would be fighting to give custody to the other person!  A lot of marriages do end in divorce especially when there are special needs kids involved.  Sometimes one parent or the other cannot deal with the special needs and that is really unfortunate.  In general I think parenting is easier when you can tag team and that is even more critical when the children are high maintenance.  

So today while I might wonder what it would be like to be a big shot in the working world, I am also thankful that I don't have to be out there trying to do it all alone.

Here are two faces ...

If you've met one person with autism, you've met ONE person with autism.

They are all so wonderfully different.  Many issues we had with Joe, were non-existent with Alan.  Then of course, Alan has vexed us in ways that were never a problem with Joe.  It is impossible to tell by looking at someone whether or not they have autism.  Here are two faces of autism ...

But there are so many more!

Today is Autism Awareness Day and for many the entire month of April is a time of reminder.  A reminder that many of these kiddos wander, many are non verbal, many have special skills and many don't.  Most have more "issues" than their neurotypical counterparts, but they aren't necessarily bothered by them.  Many of them are very happy, cheerful people to be around.  Some aren't.  There are very few "Rainman" autistics out there. 

The adults are as different as the kids.  There are those that just want to be accepted how they are and those that still wouldn't mind a cure.  There are those that get offended if you call them a "person with autism" and those that don't.

Likewise there are many parents out there and we are as different as the children we are raising.

There are the parents who embrace the autism and the ones that fight it.  There are the parents who push their children and the ones who coax.  There are those that never stop trying alternatives and those that just plug along.  There are those of us that blog about our adventures and many that are fighting silently, daily in the trenches.  There are some who are still in denial and some who shout it from the rooftops.  And unfortunately, there are those that aren't strong enough to do it anymore.

From Carly to Temple to Einstein -- autism is a spectrum.  While I personally would like a little more balance in my rainbows than I see in my daily life, that doesn't stop me from enjoying the little victories and the funny stories.

Be aware of autism in those around you.  Be accepting and accommodating of those on the spectrum and their caregivers. 

In short, "Be excellent to each other!" (and party on, dudes!)

I don't feel inspirational

Today is my birthday (Happy Birthday, Me!) and as I read through all the birthday wishes on my Facebook timeline, I got to wondering if any of these people really understand me.

Several people made some reference to how I "inspire" them.  Seriously?  I feel like such a complete and utter failure as a parent.  Some days (like today) I feel like the worst parent ever.

Today is yet another snow day for Alan.  Other parents (although fewer with each subsequent snow fall) post about how they "get" a day off with their children but all I do is think about how having the boyz home will "ruin" my birthday.

DH texted me this morning about 10:30 and asked me if I was hiding from Alan.  Yep, pretty much!  Alan ALWAYS goes to lunch at 11 when he is home.  Note:  I said "goes" to lunch.  We cannot stay home unless we want a meltdown.  This kid has fast food at least two days a week (and usually more).  I'm a failure as a nutritionist.

We make a stop on the way home to get a few things.  Alan asks for a soda at Target and I ask Joe to go get it.  He tells Alan to "Wait here" even though Alan likes to come with his big brother.  Alan yells his battle cry and Joe gets frustrated.  I'm a failure as a referee.

We get home and Alan wants to go play in the snow.  I distract him with a video because I am sick to death of sitting outside while he sleds.  I'm a failure as a companion.

Alan wants to snuggle with me in bed.  I read and he watches his iPad.  OK, maybe not the best mother/son bonding time, but we both like it.  I guess I'm not the worst parent ever, but I still don't think I'm inspirational.

Then my sister sent me a birthday card that said "Birthdays are about celebrating life, love and longevity ... so the more you have, the happier you are!"  I think that might be the point of today.  Maybe I should just let my friends think I'm a better person/parent than I think I am.  After all, only you know your worst flaws, right?

How a home improvement is like raising a child with autism ...

We are in the process of remodeling our kitchen.  By "in" the process, I mean the planning portion of the process.  My goal would be to have it done by the end of spring.  DH would like it done before fall.  Clearly we have different expectations!

However, the overall process of a major house remodeling project is so similar to raising special needs children that I thought it was funny. 

It all starts with someone noticing a deficit.  Like autism, one of us (in both cases, me) saw a problem a bit before the other.  I've been wanting to redo the kitchen for years but over the last few years, DH has (albeit reluctantly) come to the same conclusion.

So first you start looking for options.  You exhaust the internet for any and all sources of information.  What kind of cabinets do you want?  What kinds of therapies or treatments are out there?  Who do you want to do the installation?  What is the best school?

Then you start asking your friends about their experiences.  A neighbor who recently remodeled will warrant a visit.  A friend whose child was diagnosed a few years ago will get a phone call or an e-mail.

Then you wonder about trends.  Everyone else is getting stainless steel appliances.  Should you still get them because they look nice or should you go with your gut and get black because you know you won't clean them often enough and they will always look dirty to you?  Many people have had such great results with the GFCF diet but your child will make your life a living hell if you try to eliminate all sources of gluten and casein.

And there is the unwelcome advise.  We haven't gone to every kitchen store within a hundred miles and we haven't tried every treatment ever invented.  That isn't the way we operate.  We find what we like and will make the most of it.

Then there are the parts that haven't happened yet where I can see similarities.  I remember all too well the "revolving door" of home ABA.  It helped Joe so much but I hated the lack of privacy.  Yep, that would be the installation.

Then there is all the time that we will have to either eat out or get very creative with eating in.  That is a lot like the holidays with Alan.

I won't get into the economic similarities but it is safe to say that both will be pretty expensive.

But despite my opening paragraph, DH and I are in sync for this project like we are for raising the boyz.  We each compromise on a few things but overall find we like most of the same things.  And like autism there are pros and cons. 

And like autism it is sometimes very hard to imagine the end result in the early stages ...

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.

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 ...

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!

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!!!!

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!

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.

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!