Monday, September 30, 2013

The status quo is nice ...

It's easy to see how the cast has gotten dirty!
Things have been quiet around the Sparks household lately but you won't hear much complaining either!

Unfortunately Alan still has his cast mostly on (I had to cut off the part that covered his palm as it was broken and snagging on things) but we opted to not take it off at the 4-5 week point.  We all knew (including the doctor) that a splint would not stay on.  Now the cast is scheduled to come off at just over 8 weeks from when it went on.  The cast itself is beyond disgusting.  The teenage boy who hasn't had a real bath in over 6 weeks is pretty gross too.  The walls have scratches everywhere from the cast.  I really had not planned on repainting the whole house in spring, but it is looking like there will either be massive touch-ups or new colors in our future.

We do now have good communication with Alan's aide.  Our biggest concern when we started at his new school seemed to be the lack of communication (something at which his teacher of the last two years excelled!!!) but we now have a communication notebook that goes back and forth.  It seems a bit archaic after the e-mails of the last few years, but it is consistent and informative and that is all that is required.
The branches of a Bradford pear are so soft he can rip them off!

Joe is still volunteering at two different places but one of his days at the nursing home was cut.  This is probably because his job coach is having his own hours cut by the government shutdown.  But as DH's job is not in danger from the shutdown, it is hard to complain that Joe's volunteer hours are being cut.

A miniature chandelier I made this month
DH and I have been keeping busy by working out and trying to eat healthier.  We both know we are larger than we are supposed to be and periodically one or the other of us tries to be good but we both know that we have the best results when we are in sync with each other.  We've been using and it has actually been sort of fun.  However, I will not be writing about workouts or diets other than in passing because I usually find those rather boring to read.  Of course there are always exceptions but if I am not interested in reading about it, I'm not going to write about it!

I've been reading more (although nothing intellectual -- I read to escape my life!) and trying to snag a little time to work on my minis.  I haven't even been reading all the blogs I used to read although I'm trying to make time for favorites.

DH and I also got to have a movie date night this past weekend and saw Lee Child's The Butler.  I highly recommend it for everyone.  It is truly a powerful story while still being humorous and (it seemed) historically accurate.  Of course halfway through the first scene with Ronald Reagan (played by Alan Rickman) DH leans over and says "It's hard to see Snape as president" and I had to work pretty hard to not giggle through the rest of his scenes.

Alan has conquered a few new trees with his cast, but otherwise it is just the status quo around here ... and that is nice!

Thursday, September 19, 2013

When "failing" is good

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

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

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

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

Sounds win-win to me!

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

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

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

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

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

Tuesday, September 17, 2013

Separating Autism from Autistics

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

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

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

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

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

That made a lot of sense to me.

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

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

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

I just want a little better balance in my rainbows.

Thursday, September 12, 2013

My place to vent

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, September 10, 2013

I never wanted autism

I never wanted autism. 

There I've said it. 

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

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

Does anyone think these things?

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

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

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

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

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

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

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

Thursday, September 5, 2013

Not even a small pebble ...

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

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

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

No excuse perhaps, but sometimes people snap.

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

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

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

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

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

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

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