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!

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.

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 ...

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.

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 ...

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!