It Takes A Village

It takes a village to raise a child.  We've all heard that, but when your child has autism, your village is really tiny or non-existent.  Usually.  This is where we have been really blessed.  While at VBS this morning, Son 2 lost his mind over the skin on his finger under a Band-Aid having turned white.  He literally thought he was going to die.  He went from zero to meltdown in less than 10 seconds, while I was occupied helping out.  I sent him to his safe place in the building and I could still hear him 10 minutes later.  What is amazing is that everyone followed my lead and ignored him.  No trying to coerce him, bribe him, etc., and nobody questioned my actions or judged me......WHOOP!!  Once it was over, one of the older ladies said, "I don't know what set him off, but I'm glad he's better now".  Me too...I love my church family!

Warrior or Victim??

OK, so the webcasts from Autism One are up, and it seems that Jenny McCarthy has managed to piss off a ton of autism parents with the following: 

“This is something I touch about every year on - and that's the Victim Moms vs the Warrior Moms. And you're both out there, so hopefully you can recognize yourself if you are a Victim Mom after I explain this. Um, when our kid gets diagnosed, obviously I think we all fall into that same thinking of “Oh my god, I'm going to ...die. Not my kid. What am I going to do?” And there's this part that takes place - a moment where you have to decide, are you going to take charge? Are you going to give it everything you possibly can to save your kid? And then something surprising happens with a lot of other moms. They - this is all subconsciously, but they fall into this victim role and they like it." 
Now, before you get pissed, watch it in context here.

Here is my take.  "Warrior Mom" has come to mean a Mom who is doing biomedical interventions and/or the DAN (Defeat Autism Now) protocol.  But I don't think that needs to be the exclusive definition.  To me, a Warrior Mom is the one who is fighting for and advocating for her child in every possible capacity:  at the Dr's office, in the community, in every stinking IEP meeting.  She refuses to settle for the way things are and is continually raising the bar, challenging her child and everyone around him/her to do better.  And a Victim Mom is one to throw her hands up and say "it is what it is and I can't change it."   And guess what autism moms??  They both live in all of us!!  THAT'S THE POINT!  You choose (daily) which one you will be, and we need to be concious of it.  As fierce of an advocate as I am, I have days where I fall into being the victim (though they are few and far between).   But overall, I simply refuse to accept that this is as good as it gets, and that is what keeps me going, and by the grace of God, has lead to such huge improvements in my boys.  Don't underestimate the power of attitude!

Control?

Sometimes I feel like I'm the only one who really gets it.  I'm the only one who understands why things need to go the way I've got them set up.  The way I do things is not out of my desire to control things.  In fact, I have no say in much of what goes on around here.  It is simply what needs to happen to make the boys comfortable so they can function.  DH tries....most of the time.  But from time to time, he still tries to exert pressure to make things the way HE thinks they should be, not necessarily the way they are.  Then all of us (mostly me) deal with the fallout from that for days, if not weeks.  Control is an illusion.  A bad day is a bad day, and a good day is a bad day waiting to happen.

Honesty.....Brutal or Refreshing??

The Son 1 saga continues....after a month of what seemed like a miraculous recovery, he is sick again this week.  Today brought symptoms that necessitated an ER run, naturally when Doting Husband is 300 miles away, so Son 2 was stuck coming with us.  NOW, I am lucky enough to have several people that have offered to help, but seriously....Son 2 has moderate autism, asthma, and life-threatening food allergies, so I am leery about leaving him with anyone outside a select few people that I know are capable of handling that particular combo.   I wanted to wait to lean on them in the event that Son 1 was admitted.  :)  We have learned that Son 1 internalizes stress and anxiety....FAR more than we ever thought possible, and that contributes to his medical issues.  While in the ER, he started presenting with intense pain which was not present when we walked in the door.  Unlike anything I had since since....oh yeah, the last time he was in the hospital!!  On that occassion, he was admitted and they ran a bunch of tests that were fine, and got him on an appropriate course of treatment.  Today, they again suggested admitting him, in spite of normal tests, simply based on his pain level.  OF COURSE if I thought he needed to stay, I would have pulled out all the stops, called in every favor I had, and asked DH to rent a car and drive home.  As it was, I asked the Dr's (all 4 of them, as he knows how to gain an audience) if I could try taking him home to see if he could be made comfortable in familiar surroundings.  I further explained that being in the hospital alone seemed to be making him worse, and that I would, of course bring him back on a direct admit if he did not improve or got worse.  They asked me to step out in the hallway so we could talk more, and at this point Son 2's cheese was about to fall of his cracker.  He was on sensory overload, hungry, and worried about his brother.  The Dr's wanted to know if he was OK, and I said "I think so.  He has autism, so he's having a hard time with the noise level in the room."  Then one of the Dr's reached over and PATTED HIM ON THE BACK!!  Aaaaccckk!  Son 2 ducked under his arm and screamed like a banchee.  I looked at him and said "DUDE!!  Did I not JUST finish saying that he's autistic?   No touching unless you want him to REALLY lose it."  I got a blank stare.  I further stated "You work in one of the top children's hospitals in the country that has a prestigious autism clinic.  Maybe you need to go up there and get some training."  He apologized and excused himself to go to see another patient.  One of the others looked at me and said "You go girl!  I love moms who are straight shooters!"  I thanked her, walked back in the room, and told Son 1, "We're going home, so you need to get yourself together."  IT WORKED!!!  He's been fine since.....how bizarre.  But hey, we're pretty used to bizarre in this house.