Passing the torch (or maybe the plunger)

For the last several years we have primarily used one respite provider (Nikki) with another (Genni) as a backup.  Both girls are getting married the last Saturday of this June.  This is so unfair.  These girls actually have a life outside of Alan???

Working with Alan in First grade

Ms. Nikki has been part of Alan's life since kindergarten.  She was a para in his kindergarten and first grade classroom.  When we left that school we started utilizing her as a babysitter.  When a new, private school opened in his third grade year we strongly encouraged/recommended Ms. Nikki for the position of assistant teacher.  Unfortunately Alan's OCD really spiraled out of control in sixth grade and we had go to back to the public schools.  Ms. Nikki actually likes her job at the private school and is still there. 

When we first got him his iPad he wanted nothing to do with it.  In an effort to encourage him to use it, Ms. Nikki gave him some private lessons.  For so many things, she has always been there for us anytime we've asked.

But the time has come to pass the torch (or in our house, maybe it is the plunger) and we need to find some new folks to watch Alan. So we've been trying to interview/utilize a few new babysitters.  Of course, DH's first comment was "They need to be old and ugly so they don't go and get married on us."  Um, pretty sure that is NOT something we can ask when we phone interview these people.

Luckily one lady that we know and trust (she is Alan's companion on camp weekends) has come through for us and is planning to watch him so we can actually attend Nikki's wedding.  (No, we aren't planning to bring Joe.)  Even though Nikki has assured us she will still be available to watch Alan after she is married, we are realistic enough to realize that her availability will be less.  Gosh forbid she actually have a "cupcake" (her nickname for Alan) of her own.

Ms. Nikki supporting the bike so Alan could ride

But back to the screening process.  Even though Alan is rarely violent I did put that he could be "violent occasionally" in my "feeler" e-mails that I sent out to several people.  The one person that contacted me within 10 minutes thought it was funny that I put that in.  She said most people didn't tell you that up front.  Seriously?  Who wants to surprise a provider with that?

In any case we are supposed to meet the new person today.  Minutes before she was scheduled to arrive we were plunging one of the toilets while the other boy was in a different bathroom.  Maybe instead of asking about their autism experience we should ask them about how good they are with a plunger.  Sigh.

The inflamation that won't end ...

I have an eye condition called episcleritis.  My eye sclera gets inflamed and turns various shades of red.  It is not contagious.  I have not scratched it.  But it does hurt.  A lot!

I tend to get these pesky things when I'm under stress.  I got my first one when I was pregnant with Alan.  I have since gotten 3-4 a year on average -- this is a bit of guess, but I don't think I'm exaggerating.  Some go away in a couple of days.  Most hang around for a couple of weeks.  I have one now that has pretty much been here since the start of April.  Ugh.

I'm tired of people in my house.  Although for the most part the workers have all been polite, unobtrusive and good at their respective jobs, the revolving door involved with a major home remodel is stressful.

Then there are the financial implications of the kitchen.  It wasn't cheap.  We both agreed that we were going to do it "right" because we didn't want to be redoing this in 10 years, but it was expensive.  Certainly more than I initially thought it would be.

Then I got a letter today telling me that Joe didn't make it into the college program.  Truthfully this probably stresses DH and I way more than Joe.  We want more for him than working a couple of weekends a month and volunteering three mornings a week.

Both boyz are having medication issues.  Joe is experiencing severe anxiety about weird things.  A med change should help with that.  Alan's OCD is flaring again.  We are going to the doctor later this week.  Hopefully he can work a few of his usual medication miracles.

Then there are some family issues which I don't want to go into on the blog.  Some are health related.  Others are conflicts.  Each issue is another straw upon this proverbial camel.

But on the bright side, I think I like the new kitchen color!  It's a cheerful yellow.

Snow and Snuggling

Like much of the midwest, we have been snowed in a lot over the last week.  

Alan climbing up the cardiac hill ...

Really, all things considered, Alan has been pretty good.  The roughest day was Sunday because that was the day we actually had dense, driving snow all day and we didn't go anywhere.  Starting on Monday we have been back to at least going out to lunch and then going sledding at least once a day.

We back to a big hill that is common ground.  Alan loves sledding and for the most part can do it independently (thank goodness as one or two trips up that hill would be enough to give this out of shape 40+ lady cardiac arrest!) but it is yet another time when I feel his differences keenly.  After all, how many parents of 15 year olds are sitting outside watching them sled??  I could probably watch from inside the house, but by the time I would realize there is a crisis, get my snow gear on and get out to intervene, things would probably have reached a crisis point.

Naturally, his favorite way to sled is headfirst on his back.

Mostly I just have to explain to the other kids why Alan is ignoring them.  (After saying "Hi!" five times in a minute wouldn't you think a kid would give up?)  Occasionally I also have to remind Alan that he can't sit at the bottom of the hill and finish reciting his latest script when the other kids want to sled.  His OCD and need to finish the scripting seems to be worse, but that might be due to the fact that he has now been off school for three full weeks and mom just can't do structure like school can!


On the bright side, cold weather brings out Alan's cuddly side.  He is really quite a "snuggle-bug".  Alan's nickname since he was a baby has been "bug".  His real name (like his middle name, Alan) sounds dumb with a "-y" at the end so that has never been a nickname for him.  And hence, he has always been "Bug".  When the weather is cold, he likes to remind us frequently how much he likes to snuggle.

The last picture (taken by Joe) was done at my request.  He made sure to take it with my camera (instead of his new smart phone camera) because "snuggling like that is a baby thing to do" (according to Joe).  Huh.  He is still struggling to understand what is and isn't age appropriate.  I told him that there was nothing wrong with snuggling but he wasn't buying it.

Oh well.  On the bright side, at least one of my boyz still likes to snuggle!

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 ...

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!

An eye on the future

In two weeks, my "baby" starts high school.  Two weeks later he turns 15.  Where has the time gone?  It seems only yesterday that I was holding the most agreeable baby in the world (or so he seemed after his brother).  Now I am practically looking eye to eye with Alan.

Yet he is still so "young".  He still wants to play "This Little Piggy" and "Row, Row your Boat."  He still watches Veggie Tales and Thomas the Tank Engine.  But he had a "girlfriend" his last year of middle school.

He is such a little conundrum!!!

We have had wonderful successes lately.  Almost conversations and break-throughs in communication.  I've also had moments of abject terror that haven't been chronicled here where I fear for this young man's future.  He doesn't have a sibling that can care for him -- Joe can barely take care of himself -- so what is going to happen to him when DH and I are gone?

How will his new teacher and school turn out?  I know of almost no one that has gone to this school and I have no knowledge at all of his new teacher.

It is funny, but over the years, things have always worked out.

• When we wanted to put Joe in private school because of the horrible experience we were having in public school, DH got a promotion.  That school turned out to be one of the best moves we made.  
• When Joe was looking at high school and we couldn't find a private one that wanted him, we went back to our local public school and for the most part it was a rousing success. 
• When Alan needed a private school, the Catholic school system here opened up a center for autism a few miles from our home.
• When Alan's OCD became more than the private school could handle, we were past elementary school so we didn't have to fight with the school district why he wouldn't go back to that school.

So while this is not usually an overly religious blog, I am just going to say that I am trusting that God will take care of us yet again and this high school mine field we are facing will be successfully negotiated.

At least I am trying to trust and not let the terror win.

Driving Julie Crazy

Someone once gave me a small plaque that said "Whoever said you only go around once in life, never had carpool duty."  

The funny thing is, I didn't really mind carpool duty most of the time.  When Joe was in grade school we found another family with whom we meshed perfectly.  I didn't mind driving in the morning, but really did not like waiting in the after school carpool line.  The other mom didn't like getting up in the morning but didn't mind the after school drive.  It was a good fit.  We continued to carpool through two kids each and two schools and it always worked out well.

Unfortunately not all carpooling is so pleasant.  And when you throw special needs into the equation, things can get VERY interesting!

I had the kid that wanted to listen to his choice of music in the morning.  Sorry, kid, you want a happy driver and I get very edgy when I don't have my tunes.

I had the time that Alan was going to school a half hour away from home (and then I had to drop Joe off) before I could go home.  Naturally, as soon as I pulled into the school parking lot, Alan sprayed his breakfast all over the back seat.  Yuck!!

I had the little girl who would only listen to certain songs (and I had a limited number of them on my CDs).  I got to hear Lady Gaga's Just Dance song four times one morning because that was how long it took to get to school.  Thank goodness that was a close school!

I had the child wearing so much scented body lotion, I felt like I was attempting to walk through the department store perfume department.  Have I mentioned that I'm very olfactory sensitive??
  
I had the time that a police officer pulled me over and I was so happy that I had FOUR children with varying degrees of autism that were all sitting quietly and correctly wearing their seat belts that in never occurred to me that I might get a ticket.  He did give me one for "improper lane usage" (I got in the turn lane a little before it technically started) and it was all I could do not to ask him who pissed in his Cheerios that morning.

I had the child that used to insult Alan (although never when I was driving).  

I had the kid that unbuckled himself and leaned over the back of my seat to try to turn off my radio because he was going through a "silence" phase.

I had the time Alan's OCD required him to jump in and out of the open car door at least five times before he would get in or out to stay.  Naturally the other ASD boy we were driving decided he would do the same thing.

Then there was the time Alan sat ON another kid.  Luckily he had a sister who was at a similar functioning level and he just calmly said, "Alan, you need to get up."  He repeated himself several times but didn't get angry or upset.

Of course when Alan tried that with another boy, he shoved Alan out the door.

Nowadays I do a lot less driving of Joe so it is just Alan.  Camp started this week so I have been dealing with the afternoon parking lot crazies.  It is probably worse for me this year because I have a new car.  I am so worried I will end up like this!

Between buses that do not slow down when going through VERY narrow openings to the nutty parents and the pokey kids, it is enough to make me wonder if a medicine increase for the summer is in order.  That would be mine, not Alan's.

Why I don't Tweet!

Since I detailed my love/hate relationship with Facebook, it seems only fair to give Google+ their time in the spotlight ... or the cesspool as the case may be.

To understand why I even use Google+, I have to go back to the start of my blog. I didn't really see the point of a Google+ account -- after all, I had Facebook. But when I went to find out how to start a blog, naturally I Googled "blogging" and came up with Blogger.  I guess it makes sense that they would promoted their own product.  

Then naturally I wanted people to read the blog.  I was doing this for fun, but when I only got about 10 hits in the first week (and probably 5 of them were my own before I figured out how to stop logging my own page views) I knew I had to to do something to promote my blog or I was basically just typing an online diary.

Realistically I knew most people started by sharing their blog with their family and friends but I was a) shy and b) operating under an assumed identity. 

I am definitely not a techie and at first I couldn't figure out how to link my blog to Facebook.  Being of Google origin, it was very easy to promote on Google+.  Since I was taking on an assumed identity  I figured I could just be someone else on a different social network.

Ha!

These two social networks are really nothing alike.  There ARE similarities, but their differences are what annoy me.  Come on, "+1"?  Who thought of that?  Was "like" copy-righted?  

I also don't like not being able to do the equivalent of a personal message on Google+.  I finally figured out that if you post something and have it visible to only one person, that is like a personal message, but dang, that is hard to figure out and it still feels like you are putting it "out there" for everyone to see.

The ginormous screen font is off-putting to me as well.  At least Google+ doesn't always force things to "most popular" like Facebook does ... maybe that is my OCD coming through, but I want things in chronological order, thank you very much!

Someone pointed out to me recently that really creepy people can follow you on Google+.  Okay, you have the choice of whether or not you follow them back.  You can even block them but if someone looks at "CreepXYZ" and he is following you even if you block him, won't your name still be linked to theirs?  Yuck.

Then I made the mistake of "linking" my blog comments to Google+.  This seemed like a good idea on the surface because then if someone commented on my Google+ page, the comment would show on my blog.  Except ... then someone couldn't comment unless she had a Google+ account.  Well that seemed a bit exclusionary and when a RL friend tried to comment and didn't have Google+ I decided to switch back.  

To add insult to injury, all the comments that were made while I had Google+ comments were gone ... poof! ... even the ones that were made ON the blog.  Well crud.

I only had Google+ comments for a month, but those were some of my most popular posts (and some of my favorites) and there are no comments on them ... at all.  Double crud.

Now I that I have a Facebook account and a blog page set up over there as well I thought about ditching Google+.  The only reason I am hanging on to Google+ is for the blogging communities ... and of course the wonderful friends I have met on Google+!  These darn social websites just suck you in and don't let go.

And that would be why I don't Tweet!

Why I think it is okay to hate autism ...

If you just read that title and are all set to argue, you might be autistic, but please hear me out. 

Most people who say they hate autism (and yes, I am sometimes one of them) don't see autism as synonymous with autistics any more than depression is synonymous with the depressed.  I have depression and I HATE it. I have two children with autism and sometimes I hate autism.  I do not and could never hate them.

Most autistics say that it is okay to hate the "co-morbids" (the nasty little disorders that frequently co-exist with autism) but not the autism itself.  OK, let's take a closer look at that.  In our family, my older son, Joe, is fairly high functioning, verbal, usually helpful and yet has been known to have meltdowns that can peel paint.  My younger son, Alan, is frequently violent, OCD and mostly non-verbal.  Both have depression on occasion.  OCD, violence, and depression are all considered co-morbids.  And according to autistics, it is okay to hate all of those things. 

So, why is it okay to hate the co-morbids but not the core?  While Alan's core disorder is autism, Alan IS NOT autism!!!!  He is so much more.  He is giggles and cuddles and adorable blue eyes.  He is incredibly flexible and could probably be a gymnast if he didn't have autism and could follow directions.

The autistic point of view (I believe) is that since it is an operating system they are synonymous.  The person cannot be separated from the disorder.  I suppose they are saying it is like race.  How can you separate the race from the person?  You can't.  So while it might be okay to say "I hate being black, white, Asian or Latino." it IS NEVER okay to say "I hate blacks, whites, Asians or Latinos." 

And yet, I think that telling people not to hate autism can be very alienating to families who are struggling just to get through the day living with autism.  Cleaning up poop and vomit, meltdowns, anxiety attacks, social ridicule, sensory induced pain -- these are all things that are intrinsically difficult.  I can't imaging anyone cleaning up vomit or watching their child get called names for being different having a lovely warm fuzzy feeling about autism.  Some families are in the trenches with these things and they can't see beyond their current, overwhelming, sometimes painful circumstances.  These are some of the families who probably say they hate autism. 

If an autistic were to tell me that he hated neurotypicality, I would not take that to mean that they hated me.  I would take that to mean that I confused them and/or they didn't understand me.  Is he a better person if he spells out that important difference?  Perhaps.  But in any case rather than being a huge fight between autism parents and autistics, the whole conflict should probably be put down to a difference in communication.

Truthfully, I think most people who say they hate autism are really saying it confuses, scares or overwhelms them.  They are using what I would call a neurotypical shorthand.  If autism is an operating system, I would have to say it is an Apple.  I am a PC/Android person through and through.  Anyone who knows me well has heard me complain of Apple products.  As an operating system, it confuses me.  So yes, I have said I hate Apple on occasion!  That said, I love both of Alan's iPads for very different reasons.  His school issued one is turning out to be a fantastic communication tool and the one we purchased is a favorite source of entertainment.  So I may hate Apples, but I don't hate Alan's iPads.

I have heard more than a few people say that they hate their hair (usually when it is curly).  I really think what they are saying is that it doesn't do what it is "supposed" to do (hmm, that also sounds a bit like our kids).  So if it is okay to hate part of you and wish it could change, why is autism different?

If my older son were to tell me that he hated his little brother, I would jump all over that.  If he were to tell me that he hated Alan's autism, I would completely understand that he meant that Alan's autism frustrated, scared, overwhelmed and/or annoyed him.  Alan's autism affects everything about our family -- our ability to go out to dinner, over to Grandma and Grandpa's house, vacations and even the grocery store -- and so we all are inconvenienced by autism and I do think it is okay if Joe would hate Alan's autism but not hate Alan. In our house autism is an inanimate object not a person. 

He doesn't ever say it, but sometimes I think Joe hates his own autism. He hates that it is hard for him to make and keep friends because he perseverates on bizarre topics. He hates that he does things so much differently than his peers.  That said, the kid has incredible self esteem!  So I do not believe that hating (or being inconvenienced or annoyed) by his autism or by his brother's is damaging to his self esteem in the least.

We live in a world where we fiercely defend freedom in so many realms.  It does seem a little bit unusual to me that we are also quick to condemn people who don't feel the same way we do about autism.  Am I a better person if I love autism than if I am overwhelmed and confused by it?   Regardless of how you feel about autism, all people deserve respect.  Perhaps instead of getting angry at, or feeling sorry for, people who hate autism we should attempt to understand why they feel that way.  These families don't need condemnation. They need support and understanding. 

In many ways it is like telling a drowning person not to hate the water.  In their overwhelmed state, that kind of choice is not really possible for them.  But, lift that person out of the water and into a boat and then they can see how beautiful the water is.  They can see it in a different light than they did before and may realize that there is a beauty and majestic uniqueness about their particular lake or ocean.

We aren't going to get very far spreading the message of autism acceptance if we judge those who don't agree with our viewpoints.  Instead, if we work to understand and support others, we may find that we don't have so many differences after all.

Exceptional?

We had Alan's transition meeting yesterday since he is starting high school in the fall.

Overall it was a great meeting.  His current teachers obviously love him, the high school teacher was very positive about his recent communication break through (switching to "Go Talk Now" on the iPad) and DH and I were praised as "exceptional" parents.

So what is my gripe?  If we are "exceptional", then I think most parents are missing the boat.

The sort of things that got us praised were silly things -- the funny Christmas card with all his goofy climbing pictures, keeping after the doctor until we got a good medicine mix that would control his OCD and programming and using the communication iPad.  The last item the speech therapist went on and on about for what seemed like 10 minutes.

That was supposed to be the condition of getting a communication iPad from the school -- that we work with him at home as well.  After all, that is the goal, right?  Not just to have him communicate at school but at home as well.  So why is that unusual?  Shouldn't all parents make the time to take pictures of food choices and his favorite videos and restaurants?

I only spent an hour or so programming it and I really thought I should have spent more time on it.  But the SLP kept gushing about how much I did.  That just seemed a little sad to me.

Those three magic words

What three words are music to a parent's ears?  Most people would say "I love you!"  Don't get me wrong, I would love to hear them from either of my boys -- and have them mean it, not just parrot it -- but I sometimes think my favorite words are "Your prescription's ready!"

OK, not really, but I do have a close, personal relationship with my local pharmacist!  I walk up to the counter and the pharmacist (or any of the technicians) says "Oh hi Mrs. Sparks, are you here to get this month's supply?"  I am so anal-retentive that I have all our family's 11 medicines renewed at the same time -- heck, otherwise I would be up there twice a week!

The boys are on an assortment of meds and we have certainly had our shares of mishaps along the road (The Case of the Missing Medicine) but currently both are in a good place.  I won't say great, because that will change as they grow.

About two months ago Alan's OCD was out of control.  It took him 5 minutes to get off the bus in the afternoon.  He had to walk back and forth, recite scripts from various movies and just "think about it" for quite a while.  We changed one of his meds a couple of weeks ago and yesterday he was off the bus in less than 30 seconds!  Yeah!!!!!!

Today he has the day off school.  Now to see how he behaves out in public as we run errands.  Wish me luck ....

Second Breakfast

As with many other things, autistic children span the gamut from those that have to be coaxed to eat all the way to those that eat like Hobbits.  Then of course there are the ones that seem to never gain weight to the severely overweight.  Both of mine are more the latter in both respects.  Some of it is medication related and some of it is just genetics.  They are big boys and they like to eat!!!

Alan's OCD has been out of control lately to the point where it takes him upwards of 5 minutes to get off the bus in the afternoon.  While this might not seem like long, if every kid on the bus obsessed as much as he does, the last kid to be dropped off would be a good hour later getting home.  Most of my neighbors seem fairly understanding about it and the bus driver is good about pulling in the stop sign while Alan is doing his routine, but it still drives me nuts (which is admittedly a short trip.)

In an effort to speed him up, we have been changing Alan's meds.  Unfortunately that resulted in him waking up two hours earlier than normal this morning.  <yawn>  I shouldn't complain.  I know a lot of people with kids on the spectrum have kiddos that hardly sleep and in general mine are pretty good especially Joe.  But I happen to be one of those

people that really likes my sleep and gets pretty darn crabby without sleep so I am less than agreeable today.

At the moment we have more than an hour before the bus gets here and Alan has already had two full breakfasts.  At this rate the kid will have consumed his entire daily caloric intake before 10 am.

<yawn>

Awareness vs. Acceptance

As Autism Awareness day approaches, I have seen many arguments that we should call it "Autism Acceptance Day" instead.  In fact, many people in the autism community question whether we should be searching for a cure at all or just seeking acceptance.  Many of the people that feel this way are adult autistics who are happy with their lives.  As with so many other controversial discussions everyone feels like it should be all or nothing.  Personally I say both.

For those that think we should just accept them, quirks and all, I say that is wonderful.  If you are truly happy with how your life is, then by all means keep leading it.

But let's consider the other side for a moment.

Do you think that the 10 year old who is not potty trained because of all her sensory issues is happy with that?  Should she just be accepted as she is?

Do you think that 16 year old who cannot talk is thrilled that his only form of communication is his iPad?  Should we just accept that as his only means of communication and stop trying to teach him to talk?

Do you think that 20 year old who still requires his mom to shave him daily is getting everything he wants out of life?

Is that kindergartener who lashes out regularly at anyone and everyone ever going to be accepted by neurotypical kids?  Should he be?  If a neurotypical child was taking a swing at your son or daughter would that be accepted?

Maybe some of these adult autistics are thrilled with their life as it is now, but if they had a child would they wish these hardships on him or her?  I think not.

These are my primary reasons for wanting a cure.  If Alan would learn to communicate his wants and needs with an iPad I would be extremely happy.  But if there was a way to eliminate his autism, I would be ecstatic!!!  Unlike a lot of people, I don't think he is the wonderful, funny (not so little) guy that he is because of his autism, I think he is the wonderful person he is in spite of his autism.

If he truly thinks in pictures like the great Temple Grandin then I would be terribly sorry for him to have to give that up, but if he were able to speak, not have so many required rituals and could understand other people's emotions at least as well as many of my engineer friends, well I think that would be a fair trade off.

Is my reasoning selfish?  Perhaps.  But aren't most parents selfish when it comes to their children?  Don't most people want their children to have more than they had?  Don't most parents want their children to be intelligent, attractive and have wonderful personalities?  Does it mean I don't love Alan that I want more for him?  I don't think so.

Even Joe who has so much going for him, struggles with some things that I would love to be able to eliminate.  As an avid reader, it pains me that Joe cannot just sit down and lose himself in a book.  If he could actually make and keep real friends how could that not enhance his life?  I truly do not believe that if a cure were found for whatever is incorrectly wired in his brain that he would lose the essence of what makes him Joe.  I believe he would be more -- not just different and certainly not less than he already is.

So while I accept the adult autistics who just want to be accepted I still want a cure for my boys because I think so much more is possible!

Alan and clothes

So amongst his other challenges, Alan has some fine motor issues that make dressing him a challenge.  He is incapable of buttoning or snapping his fly and he cannot tie shoes.  Both problems are workable to some degree.

I always buy him pants with an elastic waist.  This was much easier when he was little.  When he got into "big boy" sizes, it was harder, but still doable.  I would order them from Land's End or similar and while they were pricey, they had reinforced knees and were generally pretty sturdy.  Now, unfortunately, he is in Men's sizes and trying to find pants with an elastic waist is more than a bit of a challenge. 

At Christmas my sister found a store that specialized in clothing for the elderly (especially nursing homes) and some elderly patients also desire pants with an elastic waist so we finally had a source of pants for Alan.  She got him a few pairs, but I guessed wrong in the size and they are way too long for him.  So a few weeks back, I ordered three new pair of these pants in the size he wears now.  I waited an eternity (it seemed) for the pants to show up but they finally did yesterday.  I put Alan in one of the brand new pants today and he comes home from school with a note that he ripped his pants today and ruined them.

What makes this extra frustrating is that it is the FOURTH pair of pants he has ripped in the last 10 days.  And I'm not talking about a small tear in the knee that could be patched.  When he rips a pair of pants it is generally from crotch to ankle.  So from here on out, my child will wear nothing but sweats because he won't stop climbing and we will be broke if we have to keep buying pants at this rate!

 I used to think shoes were annoying.  He wears out a pair of tennis shoes in less than a month.  I have been known to buy three pair at the same time.  Sometimes for variety, his OCD makes him pull at the sole until it comes off.  Yes, I have been known to try to fix them.  Here was a pair that he had worn for the first time the end of January and the sole came home in his backpack instead of attached to the shoe.  So in desperation I tried to glue the sole back on.  It seems to be attached but we moved to a spare pair in the meantime.  It will take another few weeks until those are trashed enough to need replacing.  Who knows if my patch job will hold up or not.

Sigh.  This kid drives me crazy at times!!

Joe is Destined for "Hoarders"

I have to confess I do not watch TV especially reality TV but I do not live in a bubble so I am at least aware of the show Hoarders.  Of course, I also know what a hoarder is since I live with one.

For background, I keep some things but I also pitch, donate or sell a LOT!  I really do not see a need to save baby toys or every craft the kids ever made.  I also try to get rid of books I know I will never read again or DVDs we will never watch again.  I will confess that pictures are a huge weakness of mine but I have even been known to throw away pictures.

So keeping this in mind, why am I so convinced that Joe is destined for Hoarders?

When Joe was in elementary school he was very into what he called "crafts".  Of course sometimes his craft was nothing more than writing a word or a phrase on a piece of scrap paper and cutting it out to show to people.  He would then pile the little scraps of paper on the dresser in his room.  About every two weeks I would go up there when he was in school and throw away two thirds of the crafts off the top of his dresser.  The first time I did this I thought he would get angry with me, but he didn't even notice.  He also labeled lots of things.  We used to buy tape by the case at Sams and DH would bring home scrap paper from work by the box.  He built some amazing things out of paper, string and tape!

This was also a time when he would tell stories over and over and over and over again making very slight changes.  For example, he might tell the story of the gingerbread man, but change it to a gingerbread snowman and then wonder why DH and I did not want to listen.  He would do this so often, DH and I got very adept at pretending to listen.  We both felt bad and yet it was so exhausting to have his chattering at us for hours on end saying nothing really new. 

During this time we were carpooling to private school and the other student we carpooled with was Tina, an adorable little gal with ADHD.  We used to say they were perfectly suited for each other because while Joe would tell the same story 15 times in a row, Tina would appear to be listening attentively because she couldn't remember the last 14 times because of her ADHD.  We later discovered that Abilify made Joe very OCD in this way and after we took him off that medication he improved remarkably.

One year shortly after Joe went off the Abilify, Alan started back to school before Joe after winter break so I told Joe we were going to clean up his room.  I figured now that he no longer needed to make and keep the goofy little crafts he would be a bit more willing to clean up his space.  And while he was willing, the experience was quite an eye opener!!

I found:

• hair toys that were not mine (he had picked them up from parking lots and playgrounds) 
• used sucker sticks (eww!)
• about a half dozen flashlights, rulers, old batteries, and tape measures
• the wrappers from bandaids
• toys that Alan played with but Joe decided to keep in his room so that Alan could NOT access
• a set of little toys like you buy for party favors that we had never purchased for him (shoplifted?)
• one of DH's old pay stubs
• a key to our safe deposit box

Yikes!  It has now been four years since the massive room clean up and while all the  boxes are still there with their cute little labels and contents intact, he is still a hoarder.  He saves every card, letter and ticket he can.  Here is what his room looks like now.

So while this picture doesn't look too bad, I do have to share the story that brought about this particular blog entry.

Joe loves running errands for us.  He is so sweet that way.  He will tell me "that's what I'm here for!"  So one day last week I sent him to the supermarket with some cash and the request that he buy milk and animal crackers.  He comes home and asks if I want the receipt.  It was cash so I tell him "no" and then he says he is going to go put it upstairs in his card box.  Huh?  I can see wanting to save ticket stubs and cards, but why in the world would he EVER want to look at a cash receipt from the time he went to the store for mom and got milk and animal crackers?!?!

Hoarders here we come!