Spare the Rod, Spoil the Child??

Yesterday, someone close to our family made a comment about Son 2's worsening verbal and physical aggression.  Her suggestion was that just because he had autism doesn't mean that he doesn't need a good spanking.  This is paraphrasing, because it was said to DH, not me.  If this comment had come from a stranger (or someone else whose path I would cross infrequently), I would have simply returned fire and forgotten about it.  But this is someone who I am in contact with several times a week.  I knew if I didn't address it, I would just keep stewing over it and it would cause hard feelings between us, which is the last thing I wanted.  In an effort to be diplomatic, I found an appropriate article online that discussed general autism myths vs. facts and taped a copy to her front door.  She called me an hour later, we had a really lovely chat, and all is forgiven.

As you might have guessed, one of the myths was that kids with autism just need more discipline, including a swat on the rear.  I am not a fan of spanking for ANY child.  All the research out there tells us that positive behavioral supports are more effective for shaping the behavior of all children, which is why punitive based school-wide behavior systems drive me crazy, but I digress.  A huge part of autism is difficulty understanding the behavior of other people, particulary in response to their own behaviors.  Many of our kiddos (including Son 2) would not understand why he was being punished.  He would just be afraid of me.  After spending the first 3.5 years of his life getting him to trust me, I would never purposely shake his trust in me.  Furthermore, if I were to spank him, what else would he likely learn??  That is is A-OK to hit when you are angry!  Ummm...NO!  That is not OK for ANYONE!

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. 

Agree to Disagree??

In case you ares somehow unaware, we are in the thick of IEP season.  Yes, school is out soon, but the season extends well into the summer, much to the dismay of everyone involved.  In an economy filled with forclosures and property tax caps, it seems that school districts are becoming more "creative" in stretching their student stipends.  Our local school made a series of cuts for this year that were pretty painless, at least from the parent perspective....they eliminated all but one of the assistant principal positions at the elementaries instead of eliminating teachers.  That is a decision that I can support wholeheartedly.  However, when we see this "creativity" at the case conference table, it becomes inappropriate.  WHY?  We are required (and parents are equal members of the team) to devise an Individualized Education Program (IEP) for every student with a qualifying disability.  Cost cannot be a factor.  It is simply not allowed.  When I say it is not allowed, it is inappropriate for a school admin to tell a parent, "We don't have money for that!!"  Yet I've heard it more than once, and I know it is not uncommon.  Since I am not an attorney, I would advise you to research the law for yourself to learn WHY that is inappropriate.  ;)  So what happens when the school (who has a limited amount of money to work with) can't use money as an excuse to not provide an appropriate program??  It becomes the large invisible elephant in the room.  Everyone knows it's there, but no one talks about it!  When Congress first passed IDEA, they mandated that public schools provide FAPE (Free Appropriate Public Education) to students with disablities.  Yet, they have NEVER fully funded this mandate.  Therein lies the rub.  However, I remain unconvinced that special education students are a burden, an "encroachment" even, to the general operating budget of the school.  The school gets an extra stipend for special education students, depending on the eligibility category or categories each student meets.  Autism was the biggest payout the last time I checked.  Some students need a LOT of support, some students need little to no support and most are somewhere in between.  I read an article in the local paper about our school bragging that a large percentage of the special education students here are in general education classrooms.  On the surface, we think "Awesome, that's the way it should be."  Yes and no.  When a student can be successful and thrive in a gened classroom, that is a glorious win for everyone involved, especially that student.  But all too often we see kids being shoved into a gened classroom without appropriate supports.  This is sometimes done in an effort to conserve special education resources for students with higher need.  Yes, these kids can frequently learn to sit in the gened class without being disruptive, but if they are not actually LEARNING, then it becomes inappropriate.  Son 1 is one of the kids that needs very little support to be successful.  He is able to fly under the radar on most days, and most of his friends don't know he's on the spectrum.  There is NO WAY the school spends his stipend on him, and in his case, it would be inappropriate.  Son 2 is somewhere in the middle and has moderate behavioral and academic need.  With the supports he requires to be successful, the school probably does spend his stipend on him.  And I know there are students that require more support than what the stipend covers.  So it becomes a large math problem.  The school has to figure out what they can spend on average per child, and then try to figure out how to spend less in order to cover the costs of students with higher need.  This is why school admins will frequently balk at things like a 1:1 aide, appropriate transportation, specialized curriculums, and ((GASP)) private schools.  If they can say, "Oh we think a 1:1 would make him less independent.", which is ridiculous if the aide is properly trained but I digress, then they can suggest putting him in the ABCDEFG classroom instead.  And if the parent agrees, that is that.  IF the parent agrees....the committee has to agree by law.  Parent and school cannot simply agree to disagree when it comes to the content of the IEP.  This is where conflict can arise.  Parent thinks Johnny needs L, M, N, O, an P, and school maintains that H, I, J, and K will do just fine.  In many instances the school has decided that H, I, J, and K are the cheapest way to at least make it look like the kid is getting an appropriate education.  Hopefully a compromise can be reached with as little conflict as possible, while still getting the kid an appropriate education.  When there is conflict between home and school, it frequently becomes a lose-lose proposition for the child.

Momentum

Until Easter weekend, I had been in a serious rut.  I had a bad case of Can't Find the Oomph to Get My Butt Out of This Chair Syndrome.  I had been feeling increasingly overwhelmed.  Son 1 was hospitalized twice in three weeks and was not getting significantly better.  I was definitely feeling the stress of so many things being left undone around the house.  There are literally piles everywhere.  Our DAN (Defeat Autism Now) Dr. suggested about two weeks ago that we start what is known as the GAPS (Gut and Psychology Syndrome) diet for Son 1.  If you Google this diet you will see that this diet is challenging at best, but there are few things that I love more than a project, so I began educating myself about what this diet entails.  Tensions with Son 2's school escalated with an IEP meeting that did not go well.  My professional workload had also increased dramatically, and while it is a welcome distraction, there was the ever-present concern of childcare for days I am unable to work from home.  On Easter Saturday, we were at my parent's place, canoeing on the lake.  Son 2 gave me one of those "WOW, OK, we can do this" moments.  While out on the lake, he said "Out on the lake is awesome.  There's nobody out here but us."  Indeed.  Calm.  Peaceful. Serene.  At one with nature and the One who made it.  The renewal of spring!  Once home, I've been dusting off my no-nonsense, get things done typical persona.  Doting Husband and I had a nice chat about priorities and he is helping out even more without complaint.  And yesterday I found a young lady in the neighborhood who can watch Son 1 when needed!  :)  Not perfect by a long shot, but the moss is off the stone and it has started rolling!

I Don't Know How You Do It

This has got to me the most reassurring, and at the same time, most irritating piece of "advice" that I get.  It's also the most frequent.  I think it comes from not knowing what else to say.  Or the little gem "God only gives you what you can handle."  Bulls--t.  I agree with Lori Miller Fox:  I think that God gives you what He sees fit and how you handle it is up to you.  How do we do it?  I'm not sure myself!  A huge part of dealing is my faith.  I choose to turn to Him for comfort instead of turning away.  This is a decision that has to me re-made on a daily basis, and some days I waver.  Several years ago, my Grandma had sent me a tape of Focus on the Family where they were discussing God and raising kids with special needs.  I am not a big fan of Dr. Dobson, but they had Lynn Hamilton on whose book I had just read, so she gained my attention.  They also had a dad on whose name I wish I remembered, but one thing he said really got to me.  "There are no agnostics among special needs parents.  You are either on your knees at His feet or you hate Him and you want Him out of your life for what He's done to you."  No truer words were ever spoken.  Lord, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.  THAT is how we do it.  Yes, we don't have much choice, but we can choose how we deal.  One of Pastor's sermons comes to mind....Bitter or Better???  You can become bitter and mad at the world and the One who made it, or you can let your circumstances make you better.  It really IS up to you!

Ignoring a Problem Does Not Make it Go Away

Most in the autism community are aware that there will be new criteria that the DSM-5 will impose for an individual to qualify for an autism diagnosis.  In reading the changes, it seems to me that one of the goals is to simplify matters by grouping the "spectrum" diagnoses (Pervasive Developmental Disorder, Asperger's Syndrome, Austism) into one group and just calling it Autism.  I celebrate this idea!  I have always thought it was unnecessarily confusing to have so many different names for what is essentially the same group of challenges.  Son 1 has Asperger's Syndrome and Son 2 has Autism proper, but was first diagnosed with PDD.  Personally I think professionals tend to use the PDD diagnosis to merely soften the blow for parents, but I digress.  While my sons are both unique and wonderful individuals with very different levels of functioning, I see many of the same challenges and gifts (YES, there ARE gifts that autism brings!) in both of them, and I have always considered them as both having the same syndrome, just to varying degrees.

I have two big problems with the new criteria.  The first is that there will be new levels describing the extent of the individuals functioning and the severity of autism.  I think it is inherently dangerous to further compartmentalize people within a diagnosis.  Why?  Like all people, folks on the spectrum are individuals, with a unique level of functioning, and slapping a Level 3 Autism diagnosis (requiring very substantial support) on a two year old is questionable at best.  For the record, Son 2 would probably have gotten a Level 3 diagnosis at age 2, which is when he received the PDD diagnosis.  This is likely to promote the mindset of "oh well, he's a level 3, what can we really do?" on the part of both professionals and parents.  It could impose a limit on thier potential that may not necessarily exist!  If we had adopted that mindset with Son 2, there is no way he would be where he is now!  The second thing that really chaps my posterior is that some of the higher functioning "border" diagnoses (Non-verbal Learning Disability, Semantic-Pragmatic Language Disorder, Broad Autism Phenotype, and some Asperger's Sydrome) will no longer be considered as being under the umbrella of Autism Spectrum Disorders.



I read one of the Docs state "This will do so much to address the growing autism epidemic."   Uhhhh......WHAT?  So we're dealing with the problem by re-defining who and who does not qualify to get help?  Essentially saying that since these are higher-functioning diagnoses, these folks don't count.  Nice.  Well these folks will still need early intervention and educational supports to fulfill thier potential and have a better chance to become independent, fulfilled, tax-paying citizens.  Without appropriate supports, they are far more likely to have to live on public support.  Ignoring a problem will NOT make it go away!!

How will this affect our family?  I'm not sure.  While I am confident that Son 2 will continue to amaze everyone who knows him with his progress, I do not think he will ever "lose" his autism diagnosis, even under these criterion.  I am hopeful that Son 1 will continue to get the supports he needs, so that we won't one day consider the fact that he is high functioning to be unfortunate in any way.  :)