The art of being a sibling.

I may have talked about Phoebe's brother before, but not like this.  Her brother was always "the baby".  He was normal in his development, speech, milestones, etc.  He really was.  I was fortunate not to have another ASD child, as so many families do.  Brendan has always been toted around to school, therapies, doctors appointments, and various other non-pleasant activities that involved his ASD sister.    Did he enjoy it?  I doubt that.  Did he know any differently?  Nope.  He was an infant when all these "developmental delays", "ADHD", "speech and language disorder" appointments began. Did he realize that she wanted to touch his hair constantly, because she has sensory processing issues?  Nope...he didn't mind.  That was just Phoebe.

Brendan is heading in to his 10th year of life.  He has seen it all, and been there for (almost) all of the ups and downs with his autistic sister.  When he was a little younger, he would cry if Phoebe had a big meltdown, and sit quietly until it was over.  He now will take over and sometimes go in to calm her down (before I can even get there).  He even will tell me to calm down, and let him handle it.  He is surprisingly good with her, and caring.  Does he want to punch her?  Yep.  Does he sometimes?  Yep.  Is that normal brother behavior?  For sure.  I even smile at the (somewhat) normal "banter" between he and she.  It's not usually a long winded conversation, but it is comical.  We often laugh lightheartedly with her, and at her.  Autism can be really funny!

This life however,  is not easy for these siblings.  It's not fun, and not "normal".  (Well- it is normal for us)  Have I watched my 9-year-old bend down on the soccer field, basketball court, and playground to sit with a hurt friend or opposing teammate?  Yes.  Has he cried when he sees Phoebe struggle with normal behaviors?  Yes...and then I cry, and the rest of my family cries.  (we are like that)  This boy has a huge heart.   I hate to tell you, but siblings of special needs children are born to be compassionate, caring individuals. Brendan is a great buddy to her, and a great teacher.  Now, he has even taken on the roll of personal trainer- getting her outside at least once a day to do some activities.

Once, he said to me..."So, Mom...you had Phoebe right? And, in our family we have all the cousins right? (I'm nodding through all this).  So, autism is pretty random then? So, how come Phoebe got it?" What is the answer for this?  I just gave him the textbook answer by telling him it was like every other disease, or disorder that was a random thing - 1 in 88 to be exact.  (What I really wanted to do was give him the Calvin and Hobbes version, but I didn't) His response was..."Well, I guess someone wanted us to have her."  WOW.  That was profound..and I am not a religious person.


And yes Brendan...Autism is random...and thank god you are who you are.  

To my insightful, loving, kind, and caring little man...thank you for putting up with Autism just like all the rest of us do. (you do it well)

Impulses

Think of every time you wanted to say something to someone, but didn't.  Think of every time you wanted to hit someone, but didn't.  Socially, these things are looked upon poorly.  We have learned over the course of our lives to NOT do these things.  We understand and are embarrassed (some of us), by the thought of being looked at strangely, or being criticized for being obnoxious and rude.  Now...think of what it would be like to not have that capability.  Phoebe can't control her urges, her impulses, or her rudeness to be exact.  When she wants to hit someone, say something, do something...she just DOES it.  There isn't that ability to look around and wonder..."who is watching me?"  And, really...she doesn't care.  She doesn't realize social graces.  She doesn't care if someone stares, or someone says she's obnoxious, or that she has no manners.  SHE DOESN'T CARE.  She tries to care...and has learned that she should care- but it's not really there.  Is there that ability to learn these things?  I hope so.

Is some of it learned behavior? Yes.  Is some of it obnoxious and teenager like? Yes.  But, for the most part--she can't control that part of her brain.  We are continuing to get behavior therapy to help her learn that these things are not socially acceptable.  I really want her to be able to live, and work someday without saying things like..."you're ugly, and your dress is short", or "you're a horrible driver," or my favorite, "You look fat."  When someone is 13, but has the mental capacity of a 6-7 year old (maybe), they surely look like they should know what is right, and what is wrong.  This is not true.  Looks are deceiving, and with statistics like 1 in 88 for autism...odds are you are going to run in to one of these kids someday.  Please try and be patient when you are out and about and hear or see someone doing something odd.  They could be autistic - and they can't help it.  THEY didn't ask to be this way.  I can guarantee, if you stare at Phoebe...she will say, "STOP STARING AT ME YOU FREAK!"  (and those of you who know her- know I am right)

One of my favorite stories about Phoebe was when she was about 2 years old.  We were out shopping, and she was doing her normal shrieking every 2-3 minutes.  This was not a cry, or an attempt at attention- just something she had to do.  It was literally a shriek...and then she'd stop.  An older lady stopped me and said..."CAN YOU PLEASE GET HER TO STOP DOING THAT!? My hearing aid is buzzing, because of her!"  So, I kindly replied..."Lady, if I could do that...I would be a millionaire." To which she stomped off.  :)  (It started early with Phoebe)

I hope that Phoebe can learn and evolve to a young lady that can control these urges and impulses.  The brain is an interesting thing...and I plan to work on changing hers as much as I can.  

For now...be patient with her.  She can't help it.

Recharged and acceptance

This is the one week of the year that I get to myself.  I have 6 days to recharge, go on vacation, clean-up, or do what I want to relax.  Due to a burst pipe at my house, the clean-up and organize mission was put on hold, so I came to the beach.  I don't have to worry about locking the fridge and the pantry, or making sure my phone isn't in the hands of the iPhone wizard (who changes my settings, texts multiple friends, and changes my passwords:) But this, of course, is only temporary...until she comes home.

After many long years of tears, questions, appointments, outbursts, meltdowns, and general anxiety (by both of us)...I have accepted Autism.  I can sometimes even laugh at it. Recently, while engaging Phoebe in a "normal" conversation...I asked her what she thought her dad and step-mom would name their new baby.  She replied..."pain in the ass?"  I laughed for 10 minutes.  I corrected her, of course, and told her no...that the baby was not going to be a pain in the ass. These are the conversations I have with my Phoebe.  (and probably always will) I have accepted that I will be that parent with an older child, who is following me around at the store.  I will probably be the parent of a child, who never drives herself around, who never dates (I hope:), and who will probably need some sort of care for the rest of her life.  I accept that.  A year or so ago, while working, I met an older lady in her 90's at a nursing home. She lived there with her daughter.  The daughter had Down's Syndrome, and the mother had been caring for her for more than 60 years.  I shared with her about my own daughter and she looked right at me and said..."but who better to take care of her than you?"  She also said that from the time her daughter was born...she knew she would take care of her.  This lady was truly inspiring as I watched her help her daughter eat, as they laughed about silly things. 

I accept that I won't see Phoebe dance at a recital, or play soccer like I did.  I will however, enjoy seeing her laugh at her brother and swim with her cousins, say inappropriate things at inappropriate times, and doing the things she loves.  (like changing the settings on my iPhone, and watching MSU vs. Minnesota in basketball 10 times a day)

It's autism.  I guess I have to accept that.