One Tough Cookie

Lots of kids with ASD are either hypo- or hyper-sensitive when it comes to pain.  Even Joe will have a fit over a shot but once got a nursemaid's elbow (partial dislocation) when he was about 3 and never cried.  But as with so many other things in our family, Alan wins the prize.

It was a couple of years ago on a Saturday about 1 in the afternoon.  Alan is sitting at the kitchen table eating, Joe and DH are in the next room watching a video and I walked into the kitchen intending to clean up the dishes in the kitchen.  I look down into the sink and see a bloody washcloth.  This wasn't an "I cut my finger and used the washcloth to stop the bleeding" amount of blood.  It was closer to "I cut OFF my finger" amount of blood. 

No one in the family is susceptible to nose bleeds and there had been no tears (or screams) all morning.  So I did what any typical mom of boys would do and called out, "Who's bleeding?"

Not too surprisingly, the only response was from DH.  "What?!?!"

"There is a bloody washcloth in the sink!"

"Well it isn't from Joe or me!"

Then in unison, we both head toward Alan from opposite directions.  Here was the sight that met our eyes.  (Actually this picture was taken later that afternoon after we cleaned up a lot of the blood but you can still get the idea.)  There was a 6" ring of wet on his shirt!  Since the shirt was dark, we hadn't noticed that he was bleeding but from the amount on shirt and the washcloth we figured it had happened about an hour earlier.  But did he cry or come to us?  No, he just tried to clean up the wound himself.  He is one tough cookie!  We never did figure out where or how he had fallen.

We called a doctor friend of ours and he said we could take him to the ER but reminded us that head wounds bleed a lot.  We debated but did attempt to take him to the ER.  Alan was fine with the getting in the car and driving over there.  He didn't cry until we got to the ER!  After not a lot of success the doctor basically told us to clean it up as best we could.  It healed pretty quickly.  The next day it already looked like this but you can still see the scar every time he gets his hair cut.

Last school year, he twisted his ankle jumping off the swing-set in our backyard.  He limped for days.  It was sort of funny in a way because his teacher made the very accurate observation that the fact that his leg didn't work seemed to bother him more than any pain that he might have experienced and she was quite right!

Yet this is the same kid that will NOT stand for getting blood drawn or shots of any sort.  The last time we successfully drew blood when he was awake, he was in first grade and it took four adults to hold him down and one very skilled nurse to actually draw blood!  When he gets his sedation shots for the sedation dentistry (which is a lot faster than drawing blood out) it takes two men (the dentist and DH) and several nurses to hold him down.  The last time we took him to the sedation dentist, the look of horror on the other patient waiting in the waiting room when 4+ adults tackled one little boy was priceless!

He is also mostly impervious to cold.  Anyone who has ever set a bare foot on icy cold concrete knows how uncomfortable this can be.  Several years ago when I was still driving carpool I needed Alan to get in the car one January morning.  He was dawdling about putting on his shoes.  Finally in exasperation, I decided I'd just make him get in the car shoeless and maybe after walking across the concrete he'd be a little quicker the next day.  It didn't work.  He just strolled out to the car. 

He almost always goes outside barefoot.   Unfortunately it is hard to see in this last picture that he is barefoot (but he is) although it is easier to see that the ice in the rain gauge hadn't melted yet.  It was in the mid 30's this day and Alan is out perched on the swing-set in just a sweatshirt and pants. 

I am still convinced one day Child Protective Services will be knocking on our door.  I also know that if they try to get him down without our help, it won't happen and hopefully that should convince them that this is his choice not ours.

Alan is one tough cookie!

Which Came First?

Many people have said to me over the years "Oh you must be a special mom to have been given these special children."  I am sure they mean it as a compliment, but nothing grates on me more.  I internalize that comment to mean "You must have been a person that deserved these kids."  Doesn't sound nearly so complimentary, does it?

I think sometimes people say this to comfort themselves.  They can think "I'm nothing special so I can't possibly deal with those kind of special problems."  Which in turn means nothing bad can possibly happen to them.  The only problem is, most of us felt that way at one time or another.

I truly believe I became a better mom because of Joe but I think Alan was sort of the straw that broke the proverbial camel's back.  Joe had just been diagnosed when we got pregnant with Alan.  Of course in those days, they were still tossing around numbers like 1 in 5000 and there was no known (or at least reported) genetic link so we actually thought that Alan would be our typical child.  Wow.  Were we wrong.

The boys have helped me grow as a person.  I am stronger, more outspoken and way more confident than I was pre-kids.  I also have a better marriage.  I also am more resentful.  I feel like we were short changed in the kid department.  Most people I know have at least one kid that is typical and it seems like they are all gifted.  (I know they aren't really, but most people brag about the good things they do and gloss over the "issues" that cause problems.)  It just never occurred to DH and I that we would have not one, but two children with learning difficulties. 

There is a wonderful photo story that a friend shared called The House Autism Built.  I especially love page 6.  The mother is quoted as saying “The plain honest truth is that the plain everyday run of the mill common person is given a child with special needs.  At the end of the day children with autism are not given to strong special people, we are made strong and we are made special by having to raise that child with special needs and, yes, we are very often given more than we can handle.”

In my opinion, that sums it up.  We are strong because of our children.  We were not anything special before they came along.  It can happen to anyone! 

Alan has a girlfriend

Yikes!  I can't believe I just typed that title.  Alan is 14, mostly non-verbal and autistic!  How the heck did he get a girlfriend?

However, this is a direct quote from his teacher's e-mail (only the names have been changed):

I'm not sure if I had mentioned this, but Alan has a girlfriend!  Hannah is definitely the initiator, but they frequently have to be separated in gym class from snuggling.  Not sure if you wanted Alan to put *extra* stickers on her Valentine.  Don't worry, she's super cute!  He has good taste.

After we expressed our dismay, we got this answer:

You have a cute son!  You knew someday some girl would find him irresistible!  She's definitely smitten.  They are paired up a lot for academic groups, and I guess one day she saw him  *differently *.

Oh, my!  Happy Valentine's Day!

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!!

I'm not giving up alcohol for Lent!

So the inevitable question with Lent approaching in our house ... what are you giving up for Lent?  Many people see no point to this process but I always believe that practicing a little self restraint once a year is a good thing.  Even if faith were not part of the equation, what is wrong with exercising a little control?  So for a moment let's not debate the reasoning but rather accept that it is something that happens in our house.

Since Joe was old enough to understand the concept, we have been trying to encourage him to give something up.  One year all we could talk him into was giving up toast.  OK, he was in the habit of having toast several mornings a week then but still it was not what most of us would call a sacrifice!

A few years back we had this memorable conversation ...

Mom:  Maybe you should consider limiting your movies for Lent.
Joe:  You mean I can just limit something instead of giving something up?
M:  Well if you limit yourself to just one one video on school days and two on weekends it would still be a sacrifice.
J:  But what if I wanted to watch more than that?
M:  Well that is where the sacrifice part comes in.
  (a little time passes while he contemplates this)
J:  OK, I'll only watch 5 movies a day.
M:  FIVE?  Joe, you don't watch 5 movies most days!
J:  OK, then six!

Clearly the concept of sacrifice and denial needs some work!

One year he decided to give up his favorite mouthwash for Lent.  Granted at this time the other stuff I had purchased did taste fairly nasty but still trying to explain this concept to Grandma was a hoot.

As DH and I were having our inevitable conversation this year DH stated, "All I know is that I'm not giving up alcohol for Lent!"  Hmm, he might have something there.

Missing the Thundering of Size 13's

Everyone always uses the expression "the pitter-patter of little feet" to talk about their children, but when your kids are teenaged boys, in excess of 200 and 150 pounds respectively, it really isn't a pitter-patter so much as a thunder.  Still it weird when two kids who are always around, suddenly aren't.

My kids don't have "friends" per se and are almost never gone from the house (except for school) without us.  The 18 year old doesn't have a part time job or a girl friend or even a pal that he accompanies to movies.  These are all things done with myself or the DH.  Most parents of typical kids have their kids go on sleepovers or go over to a friend's house to hang out after school or go play a pick up game of basketball at the neighbor's hoop or ... something!  Around here, the boys are just always here.  That made this past weekend extra strange.

Last blog (Camp Weekend) I talked about how much the boys enjoyed their time away from us and what we had to do to convince Alan to attend, but I didn't talk much about what DH and I did to keep busy.  The first thing we did when we got home from dropping them off?  Turn off half the lights in the house.  Whenever Alan is awake, at least 10 lights all over the house are burning.  Why?  No idea, but like with so many other things in our lives, it just doesn't seem worth fighting but with Alan gone, let's turn off those lights and save some money!

Another one of Alan's quirks is that whenever someone flushes the master bathroom, no matter where he is or what he's doing, Alan has to go and flush the hall bathroom.  Again, no idea why, but it was pretty weird to listen to the master bath flush and not for the subsequent run to the hall bath.  Also our bathroom lights have dimmer switches right next to them and Alan just always dims them before turning them off -- for some reason these are not amongst the 10 always burning lights -- so you just get in the habit of turning up the dimmer when you turn on the lights.  DH and I both said we were still reaching for the dimmer on Sunday afternoon so apparently that is a fairly ingrained habit.

The things we missed in a bad way were mostly a result of Joe's general helpfulness.  We actually had to unload the dishwasher ourselves and take out our own recycling -- two things we have probably done less than 10 times in the last 3-4 years!  The cat also missed Joe because he always gives the cat fresh water every morning.  It took me until Sunday afternoon to remember to get him fresh water.  Hey, I remembered to feed him at least!

So while it was nice to sleep in and go out to eat where and when we wished and watch what we wanted on TV any time, it was really weird not to have the boys around ... and not always in a good way!

Camp Weekend

Before last November, DH and I could count on one hand the number of nights we had spent alone together without the boys.  As I stated in one of my earlier blogs, we do not have grandparents that are able/willing to watch the boys.  We are lucky enough that my sister who lives nearby will take them occasionally, but realistically, they are a lot for any one person to handle so we do that very sparingly. 

Then in the summer of 2011 a flyer came for a special needs camp.  Figuring that Alan wouldn't like it and they wouldn't like Alan, we signed Joe up for the camp.  It is two weekends in the fall and two weekends again in the spring.  Joe was very nervous about attending, but ended up really enjoying camp.  As a time to be away from mom and dad and deal with other strangers to get his basic wants and needs met, it was a huge growth opportunity for Joe and probably a big contributor to his massive emotional growth spurt of the last year.

One of the counselors who knew about Alan asked me why we hadn't signed him up.  When I explained that I thought he was a little much for the camp, she told me that the camp was really designed for kids like him.  Huh.  Really Joe is the highest functioning kid there by far.  So when the flyer came this past summer I had all the paperwork and the deposit check filled out and in the return mail.  I was so excited.  I really didn't think Alan would do well, but I was so ready to try.

Then we found out that there wasn't enough funding and no new campers were going to be added this year.  Well sigh.  The first weekend came, Joe went and Alan stayed home.  It was still good for Joe to get some independence so we weren't going to deny him the weekend away.  Then the coordinator contacted us again and said they got additional funding and now Alan could do the second camp of the fall.  We tried to take him to the intake meeting and he refused to get out of the car to come into the building.  NOT a good sign.  What to do, what to do???

DH and I came up with an elaborate plan.  Joe and I would drive to the camp with all the supplies for both boys stopping on the way for French fries and a soda which we would bring to the camp.  DH would follow bringing Alan.  DH got there and parked next to our van.  Alan saw it and said "Get in van" (we've done enough car swaps in parking lots that this is a relatively familiar routine) and hopped out of DH's car.  DH promptly locks his car and I already had the van locked.  Now there is no place to go but into the camp building.  We settled Alan down with the fries and his soda and his counselor and ran like cowards!  OK, maybe we didn't run like cowards, but that is sort of what it felt like.

We went home and waited for the "come get this kid -- he is driving everyone crazy" call that ... never came!  Late Saturday afternoon we got a text with a picture and Alan was happily climbing a pine tree on the camp grounds.  Joe wasn't being forced to watch over his brother and everyone there was happy.  DH and I were ecstatic!!!!

So Alan's second weekend was this past weekend.  We packed Thursday night and Alan didn't seem to be paying attention but then his teacher e-mailed us on Friday to tell us that he was having a bad day after a great week.  Not good.  Had he seen the packing after all and known what it meant and was determined not to go?  We debated endlessly what would happen if we couldn't get him out of the car or something similar. 

Friday after school Joe was doing his usual "I'm excited but I'm not going to admit it" pre-camp thing and Alan seemed oblivious.  Moment of truth time.  DH lies down in bed next to Alan where he is watching his iPad and tells him "you are going to camp this weekend" to which Alan replies "No!"  DH tries a few more times with the same results.  OH-Kay!  Then DH says, "Remember you get French fries when we go to camp."  No more No's.  Hmmm. 

We even drove two cars again but we also hoped that since the first weekend was so successful that this one would be even better and luckily it was.  Alan actually started saying "Get in car!" to us this time. For a little while we weren't sure if he was asking to get in the car himself or telling us, but since he sat quietly while we got in our cars and left, we figured it was the latter.  The counselor informed us that there was much less yelling this weekend since he knew the routine and he seemed to have a great time. 

Now our only concern is that Joe doesn't really need a "special needs" camp anymore.  He even got an award that said "Junior Counselor" this past weekend because he led the cake baking activity and according to his counselor he was great about making sure everyone got to participate and understood their job.  Hmmm, maybe next year they will hire him on as a counselor and we will still get our weekends??