Conditional love?

My boys have a deep seeded, innate love for their pappies.  It's been that way since birth and has only grown with each passing day.  I can tell you that I know just how lucky we are to have two wonderful fathers that are so involved with their grandsons.  I can also tell you how lucky we are that our boys allow this to happen.  Well conditionally at least.  

I have mentioned before that autism is a social and emotional disorder.  In fact, the word autism comes from the Greek word "autos" which translated means "self."  It is actually quite a misunderstanding that autism in itself is a "new" disorder.  In truth, doctors have been using the term "autism" for over 100 years to describe children and individuals who are withdrawn from society and from social interactions and hence drawn within their "self"--autistic.  In the 1940's, when Hans Asperger and Leo Kanner were publishing their work the diagnosis, autistic or autism, rose slightly in popularity, but was still a rarity.  It wasn't until the 1980's and 90's with attention deficit disorder (ADD) becoming a household term, that scientist begin researching and developing the works of their predecessors, and the medical diagnosis of autism grew in popularity and support.  Although arguments can be made about different aspects of diagnostic conditions, the base and core of autism is the fact that people with the disorder if allowed would be completely unsocial, withdrawn and in many instances unemotional.

Therefore, by definition and in reality, my boys struggle with relationships and interactions.  For an example,  my oldest is in first grade at a wonderful school that has an autistic support classroom and he is integrated for math and specials (music, art, computers) for some of the day with the help of a one-on-one aid.  Now, it might not be surprising that my son does not know any names of the kids in his "normal" class, which he calls it.  But here's a shocker:  he does not know the name of his one-on-one!!  This lady (who is absolutely amazing) is with him everyday, all day!  Helps with food, bathroom, classes.  They are joined at the hip and for the life of him he cannot remember her name.  We practice.  We rehearse. We preach.  But alas it does not stick.  He calls her "my lady."  And that's all he needs to know.  She is "his lady" in school.  That is her purpose and hence it is quite practical to call her 'my lady."  Black and white.  

And so, the fact that they desire to see their paps; they fact they want to interact with them is more than I could ever hope for, but it comes with no lack of umm, lets say awkwardness.  I'm not sure if it is like this with every child with autism, but when my boys get attached to someone, like their pappies, then they are literally 'attached" to them.  Wherever the pappies are, my boys are right with them.  There is no separation.  No breaks.  They are little magnets and of course the paps never ever complain.  But sometimes it causes some unexpected situations, and in the event below lead to a new "contingency" that has been set in place by my youngest.

My little one, in a very uncharacteristic fashion, spent the night (THE WHOLE NIGHT) at my dad's house.  Being a little early bird, he woke up and he and gram were up to the normal morning activities.  Apparently, my dad woke up sometime later and slipped into the bathroom to take a shower.  My lil one, hearing pap-pap stir, went running into the bathroom to see his man.  (The boys do not understand privacy in the throne room.  No matter the repercussions, they can not understand why the bathroom cannot be a communal hangout as well.)  So, busting in, he went straight to the shower and whipped open the shower curtain.

"Whatcha doin' pap-pap"

"Taking a shower buddy."

"Pap-pap guess what?"

"What"

"I DO NOT like seeing you naked."  

"Umm, then close the curtain buddy...."

And there you have it.  My little one declared his condition that has now been set forth for pap-pap.  He has now informed me that he wants to go to pap-paps but only if he has showered first.  Not that he will stay out of the bathroom.  Not that he will not open the shower curtain, but that pap must shower first prior to his arrival.  Black and white.

I guess he has decided that showering is an "autos" function for pap: to be done by his "self."

Spectrum of Chaos

I'm a lover of a feel good story.  Always have been.  I'm the girl who cried when Oprah gave out her "Favorite things" to the audience because I was happy for them, and the girl who cried when I read a story about a boy with no arms and legs who wrestles in Ohio.  I'm just that girl.  So, naturally when I write I have a tendency to write feel good stories; however, another autism parent, another autism parent-blogger, put up a post the other day entitled, "reasons-i-dont-like-feel-good stories."  (Click on the title to read his article.)  The whole time I was reading it I couldn't help but to think, grass is always greener buddy.  And so I decided to touch on this topic a bit more and expand my reasoning and justification on why I think a good feel gooder can't be all that bad for the autism community.

The reason "advocates" and Autism Daddy seem to not like feel good stories is because they "think" it puts too much of a positive spin on autism.  That for those of us who have children who are able to speak on the spectrum and accomplish tasks, like being integrated in normal classes, get a driver's license, and pretty much anything notable, will be detrimental to the fight and struggle to get funding, resources, and education for all members under the autism spectrum diagnosis.  They also worry that it shines to much of a positive light on how hard it is to struggle with a child, teen, adult on the spectrum.  To this I can understand their reasoning for about point five seconds until I think, ummm no.  Not buying it.  You just think the grass is greener advocate person or parent who has it hard.  Here's why.

I'm a scientist.  I have worked on many, many research projects that were funded by different avenues, such as governmental, private, corporate, etc.  The one thing they ALL had in common was the need to progress and demonstrate findings.  NO ONE, and I mean no one wants to fund something that brings no step forward in the scientific community.  And if your results look like you got no where, better spend some sleepless nights in the lab figuring out how you can spin it to make it help in some way.  Look for that silver lining.  So, if we keep posting stories that aren't progress, cute, feel good, melt your heart stories, guess what.....bye bye funding.  Bye bye million dollar donations from the rich folk.

Think insurances will want to pay for therapy that goes no where.  No.  Think governments, pharmaceutical companies and universities want to do or fund research that keeps saying,....yup they are still stimming and we don't know why.  Or yup, they still can't speak, or have seizures, or not sleep, or obsess, or, or, or, or, or....  Catch my drift.  The good helps the bad.  The bad helps the good.  The ying is the yang.  It's a balance, or an equilibrium....one of my favorite words in the English language.  But there is also another reason.

IT'S A SPECTRUM DISORDER.  An umbrella like so many like to say.  Here's how I like to explain it to someone who is new to the idea of autism.  The diagnosis is just like cancer.  Cancer is a spectrum, umbrella disease.  Think of a conversation you have undoubtedly had with someone.  

"Did you hear Uncle Bob has cancer?"

"Oh no, that's horrible...."

Fill in the next part of the conversation.  More than likely the session proceeds in the following manner.

"....what kind of cancer is it?"

"I think they said prostate."

"Oh.  I heard that's not so bad.  I'm sure he'll be fine."

Ask Uncle Bob.  I'm sure he is not so fine with that diagnosis, and because someone 'thinks' they know what prostate cancer is like, or breast, or lungs, or pancreas, or whatever, but until your family undergoes that type, you can never and will never know what each and ever individual feels or goes thru and how their family deals and handles the situation.  You can't.  It's impossible because each case of cancer is unique as the person that has it.  Enter autism.  Each individual is a unique case, with special circumstances and no two are alike.  

When it's a spectrum disorder, all NEED to be included.  They should be included.  My sons includes the nonverbal with the verbal kids in his autism room, in that he honestly doesn't see a difference.  Know why, he's a kid and hasn't been taught jealousy yet.  Just within the last couple months has he noticed that he's different than the other "normal" kids in his "normal" class, as he calls it.  And guess how hard it is to listen to your kid tell you, the parent,  that he knows he's different and the other kids know too.  Guess how hard it is to have a verbal autistic kid with high intelligence seek out sharp objects to cut himself with to "feel" or release?  Guess how hard it is to realize your kid gets lost in his head and you can't get him to respond for long periods (days, weeks) and you just have to wait until he comes back?  Guess how hard it is to realize that your kid can mechanical figure out how to work something complex that you yourself can't do, but can't wipe his own bum?  Or, and this I admit is going to hurt us all, guess how hard it is to have your kid stim verbally the same questions over and over and over again and you can't get them to stop and you think I wish he would just stop talking already!?  Am I complaining.  Damn right.  And its okay,  And its okay for someone with a nonverbal child that to complain too!  And tell good stories.  It's okay because in the grand scale of things, we are all in the same boat.  We just want the best for our children.  I can not imagine, nor pretend that I know what it's like to not hear my child talk.  Or walk. Or have seizures. Or not eat.  Or not go to school.  My heart breaks when I read so many of those stories, and I think I'm so lucky.  But that doesn't mean I need to or have to down play our struggles as well.  Nor should I not tell or expand on the funny side of life because I'm a feel good story person.  I'm just a individual who likes to play with the glass half full. 

My feel goods are still getting attention to the subject of autism.  Any publicity is good publicity. Search  #autism and see what you get.  A ton of Aspie's, nonverbal, parents grandparents, people all talking on all levels about autism.  Its amazing!  Feel good, feel bad, it doesn't matter.  There out there talking it up.  A few years back no one knew what autism is.  Today we have walks that thousands attend.   And tomorrow who knows what will happen.  

So after all the above, I have this to say.  It's raining autism folks, so open your umbrellas.  :)      

Shock and Awww

In this house it is quite the norm for me to get stumped or corrected by my aspies on a daily basis.  They call me out on pretty much every mistake I make.  "No mom, you don't jump in the car, you step into the car."  "MOOOMMMM.  Stop calling me baby, I'm a little kid.  I am four."  And everything in between.  But sometimes the things that comes out of their mouths leave me literally speechless.

For this little tale, I have to back up a few months.  2015 was what I would call a shitter year.  Many things occurred including the loss of three of our dogs.  Needless to say, with having aspies it was quite a unusual time for me.  They had so many questions about death, heaven, souls, and religion in general.  I dealt with answering questions that I swear top theologians experts would have struggled with and decided the best solution was to buy a bunch of books to help me explain the unexplainable.  As our therapist Nicole put it, "They are dealing with questions that I'm struggling with currently."  In the end, I think our approach is to practice what makes the most sense to them, so we were probably the only home in the southwest PA region that had a Day of the Dead ceremony to honor the puppies and family members we lost.  (Hey it was my oldest son's idea and it was quite beautiful, dog bone tributes and all!)

See, death is quite different for an aspie than for other folks.  Take for instance our dog, Bucket.  Bucket was deaf and was full of energy.  He loved to chase our chickens and on one beautiful summer day a series of unfortunate events unfolded.  The "baby" and I were outside feeding the chickens and Bucket was on the lead.  He was chasing a chicken playing and somehow got out of his harness.  He went after the chicken that took him on a little chase that was getting to close to the road.  Of course being deaf, he could not hear me running and screaming for him, and of course even though we live in the country, it was the one time a car was flying down our street at just the right time.  He died in my arms and I was devastated.  I couldn't stop crying (ugly sobbing is more of the description) and was quite perturbed that my boys seemed so unaffected by the horrific occurrence.

 Finally later in the evening, my oldest said, "Mom stop crying already,"  "I'm sad buddy.  It's okay to cry when you're sad. Are you sad?"  "No.  I'm not sad.  It was an accident.  I love Bucket but he's dead and crying will not bring him back. And now Lola and Charlie have a new friend to play with.  I'm happy for them."  "Oh.  Okay," I said.  Since, I had already explained Heaven and a soul to him with the others passing, he had already decided where Bucket was and has situated his emotions in the practical way that only aspies can.  Buckets death was done.  Finite.  Move on mama.  For them, life is black and white, no gray no way.

And so I vowed that we in no way would be getting another dog any time soon.  I needed a break.  NO WAY NO HOW would we get another dog.  I can see your heads shaking from here.  Yeah right Lisa.  Never say never.  Well, I should have known  better.  The week of Thanksgiving I got a call from a rescue place that they had a boxer that was in very bad shape that needed a foster home.  Crap, I thought to myself.  Sure, email me the pictures.  Poop, she's white.  Oh my gosh, look how skinny she is!  And then I heard myself saying, sure I'll be up to look at her.  And I was hooked at first sight.   Before I knew it, three days had passed and she was in my car on her way home with me on Thanksgiving day.  Hey, don't judge.  You would have done it too.  To give you an idea of her conditions; a normal boxer her size should weigh 60lbs.  She weighed 25 lbs.  She had a wound on her ear, and her eye, and had no clue what a toy was.  She needed us and as it turned out, we needed her.

I was so worried that she would be stand-offish or shy, but that was not the case at all.  She is a pure lover and if you let her, she would remove your first layer of skin through non stop kisses.  And she immediately took to the kids.  I mean immediately.  My oldest had a rough time on Thanksgiving and she would paw at him and lay on him to stop him from head banging or hitting himself.  She would kiss him and just put all of her 25 pounds on him.  Later that night, after we taught her that it was okay to lay on her new dog bed, my oldest said, "Mom, she really loves me."  "We have to fix her and keep her."  And that was that.  Our newest member of the House of Crazies was made official, and Daisy, a 9 year old tortured boxer,  found a forever home.

Think the story is done....oh silly you.  For this is not just a feel good story.  As the days passed and the boys got to exam her more and more, they began to notice some differences with Daisy than our other dogs.  You see Daisy looks like she has had many many litters.  In fact, she has had so many that her nipples hang down like a bad national geographic documentary.  Since none of our dogs have had litters we never had this before.  I noticed both boys looking at them and knew at some point I was going to have to address the issue, but boy I was not prepared for what came out of my youngest's mouth.

"Mommy, why does Daisy have so many wee-wees?"  "What!!??" I said.  "Wee-wees", as he pointed to her nipples.  "Is that because she has to pee a lot!?"

After a few moments of me trying not to laugh and scrambling to come up with an answer, I heard myself saying, "Yes hun.  That's exactly why."  I'll deal with those repercussions at a later date.




**Wanna know Daisy's progress. Like this page on Facebook as we continue to journey in the House of Crazies!**