GillyWacker

Daddy's tool for the Autism blues

Hello parents, friends, members of Team Gillywacker.

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Since the beginning of time I guess.  We Special Needs Parents have favored the statement “They Just Don’t Understand”.  Normally at this point I would say “My opinion”.  I don’t think this really is just an opinion.  I suspect, although I have no way of proving it, “They Just (really) don’t understand” is often fact.   The point of this entry into my blog is to say.  We the parents are in a large part responsible for this discrepancy.

My mother and father were excellent role models when it comes to parenting and children.  Mom, always happy to have our friends over, always happy to make sure there were activities and yummy eats available.  Mom Treated my friends well and I believe genuinely enjoyed playing host.  When people came to visit our childhood home,  children were always welcome.  I have always believed Mom enjoyed the visits as much as the visitors.  And dad,  He was no slouch in this area.  Not only at home, but at his work it was not at all uncommon for him to take a break from business to entertain a customers child.  Dad also seemed to personally get as much out of these interactions as the kids he was entertaining.  They both undertook these task’s like professional parents.  Knowing what was appropriate for what age group.  Mom was just as quick to set up and participate in sparkly crafts with little girls, as she was too throw a football with the ornery little fella’s that came to play.  Dad’s approach while not quite as polished as mom’s.  Was equally age,  and gender appropriate.  Most importantly I believe everyone including themselves had fun and enjoyed a good time.  Fundamentally, unless there was some specific situation like being allergic to butterfly’s,,

blue-butterfly-1566510-639x510 (1)My parents knew the rules.

This was not lost on my brother and I.  Over the years I have seem similar situations when visiting with Steve and Patty (brother and sister n law).   Patty would set up parties for the kids.  My brother Steve was always a participant if he was home.   The same goes for my wife’s side of the family.  Everyone genuinely enjoys to company of kids.  Everyone engages in the kind of play or talk that most would consider kids-on-playground-1436560-639x390“Normal”or “Typical”.

Much of this entry I am going to use my dad as an example.  A guy that is just as likely to play a game of chess with a 12 year old, as lay on the floor driving hot wheels cars through a make believe linoleum kitchen town.  My dad really does not watch,  or babysit Chloe (Daddy’s Girl).  Dad has always been a master at avoiding tasks or conversations when he felt they needed avoided.  I have to admit.  It’s been a sore spot with me.  What makes that worse is knowing how much he enjoys play, how much he enjoys sharing advice,  and how much he savors a chance at being someone’s (especially a childs) hero.  So for many years,,,, Well lets see, 13 years to be exact it has been one of those kind of unspoken grey area’s that neither of us really feel comfortable talking about.  The more I think about this,  it seems to be a grey area for lots of family and friends.  When we have one of the long overdue visits from My Brother and his family.  They try, they really do.  At the same time we get the awkward looks like a cat on the ice,gato-1552293-639x417
that says we really don’t know what to do?????  There is no question in my mind when my wife’s mom, sister, or aunt visit that they would absolutely love to engage and have a meaningful relationship with Daddy’s Girl.  I can see it clearly as day in their eyes,  that look to me reads “We wish”.

Recently I have noticed more than several post’s on FaceBook by peers of mine (special needs parents).  Post’s about how they have lost good friends as they entered into the special needs parenting world.  Mostly these posts are not about putting down the friends they lost.  Rather they have been about thanking the friends they have gained.  Some are about the sorrow they feel lossing such long term, closely held friendships.    So I really begin to look around.  While looking around I tend to look at myself.  The truth is I am uncomfortable around special needs children.  I don’t know how to behave, what I can, and cant do.  And to be painfully honest,  I am uncomfortable around their parents.  It’s no easy thing knowing what can be talked about,  What offends, or What endears.   We are lost, lost-2-1306327-639x852 The thing is,  We (special needs parents) at some point,  have to accept our responsibility in this difficult situation.

Now to the meat and potato’s of this post:meat-and-french-fries1-1523040-640x480Everyone know’s,,,,,EVERYONE KNOW’S! that the rules have changed.  Back to the beginning of this story.  Mom and dad playing with all the kids,  Family and strangers alike.  Kids within varying age groups, genders, and ethnicity.  For the most part, They knew the rules.  Talk baby talk to babies,  expect spit up and potty accidents,  little toddler girls, and boys like to run and laugh.  adolescents play games, girls talk, boys like disgusting things ect. ect. .  Parents,, my Mom and dad, your mom and dad’s all have many shared experiences.  Lot’s of common ground.  Really that statement can include pregnancy to adulthood.  Yes I’m using my parents for examples.  But I think this applies to a very large part of the population.

chalk-and-eraser-1427701-640x480So now, out of the blue, they are starting from scratch.  In our specific case.  How does one play with an Autistic child who has no interest in playing with you? How do you talk with a child that does not talk back,  or even animate like they understand what your saying?  In our specific case.  When does the conversation change from simple easy to understand speech to more casual adultish conversation?  My parents, most people I suspect are just are unsure how to interact.  My dad’s favorite phrase right now is “Sometimes people just don’t know, what they don’t know”.  What they are pretty sure of is, they can get it wrong.  And if we (special needs parents) are not sensitive to this.  They can get it really wrong.  Not only can they get it wrong.  A large portion of the blame for them getting it wrong will (should) lay at my (our) feet.  This is going to be a terrible analogy.  If someone gave you a scalpel and told you to perform open heart surgery.  Most likely you going to say “Hell no”.  Not necessarily because your afraid of blood, not because you don’t want to help.  Because your afraid to screw it up.

The Plot thickens:

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One option is talk with us (the parents).  The hitch in that giddyup is while they are accustomed to talking with parents.  Most of our parents after all, are themselves parents and have a lot of common ground to build on.  They may have little, or no common ground as special need parents.   Where do they start the conversation?  Lets take a second and admit one more small truth.  We (adult humans) do not like to admit we don’t know,  or do not understand stuff.  Especially when that “stuff” is supposedly simple like how to interact with a child.

Ok we (I) feel confident talking will go a long way to resolving much of the anxiety.  How to talk with parents of special needs children?  New parents as a demographic by themselves (not necessarily special needs) are a difficult group to talk to.  They all think they have discovered the wheel.  Read a magazine story, clicked a link in the web,  and have the exclusive “Key to the Mint” for parenting.  The parents in this conversation however, are parents of special needs children.  Again my dad has really no base, no foundation to intelligently breach those kind of conversations in the first place.  He would have to spend countless hours reading what I read, researching what I research, and being in our (my) “actual boots on the ground” to go there.  Even if those limitations could be overcome.  You now are confronted with.    What is, and what is not offensive to the parents?  What topics are off limits?  When does their effort in understanding become an insult to our (my) hard fought battles and countless hours of research?

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Plot twist:

Ok I believe it’s safe to say,  THERE NEEDS TO BE A CONVERSATION!  This is where I think things get to the “Immovable Object” stage.    WE THE PARENTS OF SPECIAL NEEDS CHILDREN!  are not always sure of the rules ourselves.  In the world of Autism for sure.  But I would also imagine this to be applicable for many other diagnosis.  We are really not sure of ourselves.  I can (and have) literally read for entire weeks,  intervention’s, strategies, works of understanding,  that are absolutely and completely contradictory of one another.  Often (speaking for myself) I choose a path, unsure but hopeful.   I (We) choose this path not because I know it is the right path, but because I feel that I have done my due diligence weighing risk vs value.   I  am hopeful have chosen correctly.  Because we (I) have made this decision I now feel the need to defend it.  I know it’s wrong,,,,,I KNOW IT’S WRONG.  But I find myself doing it anyway.  My ego does not want to believe I wasted an endless number of hours researching, not only looking at reports, but getting into the nuts and bolts of studies methodology ect.  Only to be proven wrong by someone who caught then end of a Today show segment.

So what the answer?  One of my favorite people in the whole world passed awhile back and I ran into my cousin at the funeral.  Daddy’s girl had become uncomfortable with the acoustics of the church so I went out side to try and calm her.  I had not seen or talked with my cousin for probably over 20 years.  Not because of any issue, we had just gone our separate ways.  He came outside to visit and I explained the situation.  His simple words made the “Immovable Object”, move.  I had mentioned Daddy’s Girl was Autistic,  his reply “So what’s that like?”

I say if your an outsider looking in.  Question,,,,,,,,Use a very broad question,  then Listen.  That’s the key.

I hope simply writing this.  Putting my words and thought’s down for all to see.  Makes that “Immovable Object” less firmly in place.  I always hold on,  that hope and understanding is the key to finding common ground.  A place to start, not standing still.  I have tried my best to come up with the most simple solution.  Something that deliberately did not address they abyss of all available disabilities with their equally daunting number of accommodations.  Start with a simple question,  Then take your time to listen.   It’s not that I am closed off to your solutions, or advice.  It’s that I (we) want to be heard.  And that anything you say after listening will have much more meaning.  It will have more meaning because it will come from at least a basic foundation of understanding.

Grandparent, family, friends.

Yes the rules have changed.  The rules for interacting with our kids.  The rules for interacting with us.  Please DON’T GIVE UP ON US!  If you want to be a meaningful participant.  LISTEN.  We want you with us.  We may not always open up to you because it would first take a significant amount of time,  Second we are oftentimes, unsure of ourselves.  We want you on our team.  Soon you will come to see how extremely rewarding our lives can be.

 

Parents of special needs children.

This post was as much for your as it was for those outsiders who would like to be in our lives.

It is incumbent on us, to do what we can, making ourselves and our children available.  Sharing, is a critical component  for the people we love.  We frequently ask for empathy/understanding from others.  It’s time for us to practice what we preach, to be good stewards of empathy, and understanding. To lead by example.   We are asking of others,  something that (for the most part) was not “asked” of us.  Take the time to explain things.  Explain them as often as we are asked.  Leave room for opinions that contradict our own.  That contradiction most often is not adversarial,  it is a clue that others are actively taking an interest in us, and our children.  We are still, and always will be shot callers for our Children .  It’s OK to not always agree, remember to do it politely.  Remember that’s OK if their not comfortable with some stuff.  Often I am not comfortable with some stuff.   I (we) most often have no choice other than to get comfortable with it.    We can work around weird and or uncomfortable.

 

There is so much to be gained by going the extra mile trying to keep people we love in our lives.  Understand at times this is no small request from us.  Remember these are People we love,  people who love us, People who can share our wins, and people who can lift us up when we fail.  These people should be “On our Team”.

 

I know, at times this is a major Pain In The ASS.  In the long run I think we will all be in a better place.  And yes I understand some people are just “AssHats” right out of the gate.  I suggest it is ok to laugh at the AssHats in our lives.  Ultimately they are the one’s who lose the most.

 

 

 

 

Talking POOP.

Ok well I seem to be on a roll with this blog thing.  Since the reviews are in:  Good Reviews=0 and Bad Reviews=0  its time to step out and plow though (pun intended) Poop.

 

I know,  I really don’t want to talk about poop.  And you probably don’t want to hear about poop.  But I’m doin it anyway.

 

Poop is really something that would have never even made my pre-children top 100 things to write about.  And would have not ever been on my radar as a teen.  But since the time our kids were born.  Poop has never been far from my thoughts.  Ironically poop,  baby poop.  Is one of the things that has a way of putting a marriage in perspective.  I doubt there is a married couple out there that has not thought, or said aloud to their spouse.  “Laugh all you want some day you’ll be wiping my @zz”.  Even though all parents will have poop conversations.  Special needs parents tend to take those talks to the next level.  Much like us (the Daddy’s) dont, or should not participate in a birth giving conversation with mothers.  Non-special needs parent’s should be aware that we (special needs parents) can have poop talks that last for hours.

 

As a toddler poop is like extra credit.  It a burden to break into a busy toddler schedule of playing with Thomas trains, tossing mothers freshly folded laundry,  or putting non-food related items in their mouths.  Poop is just not one of their favorite things to do.  We all probably felt a corner had been rounded when our children actually learned where, and when to go.  It was like a birthday party, with people cheering and such.  But that quickly faded.  As adults,  we can admit to this.  Most of us really did not appreciate a good poop until we got older.  In fact now as adults its almost a scheduled event.  10 am grab a newspaper maybe a magazine and a soda.  Lay out items (clipers, Qtips,ect) in case there is time for additional grooming.  At some point children get this connection to poop and adults.  When I was a child.  The house could be on fire.  “That’s OK,  I’ll wait for dad to get out.”

 

With Green (code name for my boy)  it was normal poop issues I guess.  With the exception of a shotgun event in a clear acrylic bassinet.  That would have been the type of thing you would expect in a quentin tarantino movie about babies.   Which was either very cool, or very disturbing IDK (depending on where your taste in art lies).   Could anything  have made the day any better?   Having a living alien creature popping it’s head out of the stew.   Of course he was just a baby and thought it was funny.  He did not care much that his Nana was collateral damage. Wrong place, right time.   Otherwise poop was just not a priority.  It would happen, when it happened.

 

One (well two) of the mistakes I made with green,  while on a hike.  Teaching him the wonder of the great outdoors. When if its time to go, well then it’s time to go (Not poop of course).   Much earlier I had success teaching him that poop could be strategically placed in a specific location.  Like the toilet bowl, in the bathroom,  at home.  It’s unfair to think I could have anticipated that he would combine those two lessons.  And go in the corner of our fence, in our yard,  at our house,  in our town.  Live and learn I suppose.  It was one of those moments,  I would have rather not been around for.  He never has completely grasped the concept of flushing each time.  I dont know if he figures its like school art.  That he is proud of his accomplishment and wants to share it with me, or what.  I would have thought at this point.  I had dumbed down the instructions enough.  I think I am going to rubber band a dollar bill to the handle.

 

The experience with Green did nothing to prepare me for what was to come.  For people who are Autistic.  GI issues are not uncommon.  So much so that it is a major area of interest with groups associated with Autism.

 

This is taken from Autism Society

  • Chronic Constipation and/or Diarrhea:  Recent medical literature cites that 70-80 percent of autistic children have gastrointestinal symptoms.


So with Dg (Daddy’s girl) it was a different story.  First the typical issues.  Which for reasons unknown to me.  Evolved into wow situations.  She could go for long periods,  without going.  That had a way of displaying itself in her behavior.  When these things happen to us adults.  We are generally not the best versions of ourselves.  It is no different for her.

 

firework3And when the Eagle would land.  It was,  for sure,  a cause of celebration.  I would call family and friends.  I wanted  the Gate City paper to print a headline “We Had a Poop!”.  And have a ticker tape parade with Dg riding on the bonnet of a convertible down Main Street.   Throwing out tootsi rolls to the crowds.(that somehow sounds wrong) Our methods however, was less than ideal.  And  for the sake of this post.  We will just say it involved some last resorts.  We did go to an excellent MD in St Louis  Amy Davis  (I like,  and recommend Amy. She also has a child on the spectrum) More on that later.  For the purpose of this story she moved mountains (pun intended).  Our current long term, has been a combination of the right foods,  and old faithful Mira-lax.  DG is pretty picky about what she eats.  Picky does really not paint the picture.   Typically her choices are chips, Cheese and bread.  not historically good pooping choices.

 

 

 

 

So at home, near the rear end 😉 of the day,  every day, is the question “Was there poop?”.  And if there was.  I want details.  “Really?”  “Lots?”  “Specific gravity?”, “Tensil strength?”,  ect,  ect.  Just kidding,,, not really.  A surprising amount of poop and poop related  conversation takes place at our house. Our creativity in describing the days take, is a source of never ending fun (remember you have to make fun)  So if your over to the house, and you hear me shout out,  “Just a couple of chicken nuggets!”, or “raisinets, nothing but raisinets!”

close enough

close enough

you should be able to crack the code.   And of course Dg’s Nana (Great Grandma) insist on having a daily poop report.  She is actually worse than me about it.  I think Nana should just put a pot outside her door so she doesn’t even have to wait for Dg to enter the house.

 

What amazes me is its  incredible hardness.  When we visited Amy she requested that we send some poop in to be tested (in the mail).  Break it up and dilute it in distilled water the instructions read.  And your done.   WAIT!,,,.  As I profread what I have just written.   I realize “Not enough information”  My readers want details.

 

More information: We are instructed that thorough testing needs to be done.  This is done via a peepee and poopy kit.  To be mailed (yes I said mailed). I would imagine on a shelf,  in a van,  right next to your grandma’s Fruit cake and Christmas presents.  We receive the “kit”  Consisting of several containers.  What immediately strikes me is.  There should be no problem at all to have her potty (seperately) in these tiny individual sample cups.  “Piece-O-Cake.”   I have no doubt that most of you could sit your children down and explain “Only pee pee in this little cup”  Or “Just poopy in this “smaller” test tube”  No problemeo.   I did what I think any reasonable father would do. Ran down to Dollar General.  For some reason Dollar General is the place I go to for kid releated “work around” idea’s.  Sure enough the idea’s were there looking me in the eye as I strolled the aisle.  I picked up several (needed to conduct trials) of those inexpensive, disposable,  aluminium Turkey baking pans.  With a little manipulation I was able to form them perfectly around the bowl and under the seat.  Next I perforated the center, bottom of the pan and pressed it lower.  This would allow liquid to pass into the scotch taped cup underneath the bottom. Therby saving the solids out of harms way. Like a dream come true, problem solved.   There may already be a “Turkey baking potty separator” commercially available IDK. I plan to sell them on this site for around $200.  That sounds expensive.  But there was considerable R & D that went into their development.

Poopy/Peepee separator prototype

Poopy/Peepee separator prototype

 

Next the samples had to be properly prepared.  “How hard could that be Bryan?”  I’m very glad you asked.   I was afriad were where going to have to solicit a jewler with diamond cutting equipment.  Ironiclly enough the kit came with a supplied wooden ice cream spoon.  The kind you get in individual ice cream servings at the store.  They might have even said “Ben and Jerry’s,” or “Chunky Monkey” or something like that on the handle.  And it may have worked fine had I not been working with the “Geode Poop Ball from Hell”   It became kindling in short order.  The best way I can describe the process.  It was exactly like filleting an extremely large marble.  After which would need to be further broken down into pieces small enough to fit into a test tube.  “Piece-O-Cake.”

 

When all that business was said and done. And we get Dg back on track.  Keep in mind the pendulem tends swings the other way first.  But eventually we get things managable.   We still have intermittent issues.  The Gillywacker home sewer is already a little fragil.  It seems our “lift station” is unable to handle things like,  a wash cloth,  panties,  Little ponies,  ect.  Without sending me a 2k bill.   So even though I am excited to hear the plop plop.  And typically Its not so much the “chicken nuggets” or “raisinets” (unless unexpectedly high volumes occur)  that create issues.  I know my meager consumer grade equipment. Can not handle the “Geode Poop Ball from Hell”.   I am going to try and reduce the learning curve for anyone who is looking to this post for advice. If you read this and think  “Hey Bryan we also have poop Geode’s.  What do we do?” Kitchen utensils,  typically have too short of handles.  Yes some may work.  It however would be similar to using a short, snake catching stick.  You really dont want your hands that close to the business end of what your working on.    Brushes and plungers simply lame.  Not up to the task.  A power drain snake would be ideal.  But to be honest, its overkill.  I have found the Titan Duty Toilet Auger to be just right.  However one more nugget 😉 of wisdom.  Have a staging area ready prior to using it.  They (Titan Duty Toilet Augers) are awkward and wont sit comfortably outside of the bowl.  Kinda like leaning a top heavy, pool noodle in the corner, only with poop on it.

 

At some point you have to develop a rythem to things.  And that includes poop.  You cant avoid the tough subjects. The not so-pleasant -ones.  When we dont discuss these things.  When we behave like they are Taboo issues to talk about.  This is what causes additional distress.  Especially to new parents who may believe its only happening to them.  The fact is everybody poops and every parent distresses when that is not working as it should.  And the more we talk about it the more we know.  More unique idea’s appear.  More advice is shared.

 

Even though I know it’s at times uncomfortable.  Talk, be heard, and listen.  Its not the key to the mint.  But it provides incite and comfort when it is needed most.

 

 

 

Rock on

Gillywacker

Autism, Aggression, & School

Caution:  This is a hot button topic for me.  And may offend some people.

 

While Aggression and Autism are not a constant.  They do have some very real statistical ties to each other.

HOW MANY CHILDREN WITH ASD HAD AGGRESSIVE BEHAVIORS?

Among the entire group of 1,380 children with ASD, the researchers found that 56% were engaging in aggressive behaviors towards caregivers, while a smaller number (32%) engaged in these behaviors towards non-caregivers. Similarly, 68% of the children had previously behaved aggressively towards caregivers and 49% towards non-caregivers. These are extremely high rates, especially when compared with those for people who have intellectual disability (ID) but not autism. Aggressive behavior has been documented in only 7-11% of these individuals.8,9This study therefore provides solid evidence that aggressive behaviors are a major challenge for families of children with ASD

Information provided by IAN http://50.31.3.29/cs/simons_simplex_community/aggression_and_asd Which is my “go to” for Autism research,  “Reproduced with permission of Kennedy Krieger Institute, Baltimore, MD.”

 

As far as parents are concerned.  This topic accounts for a significant amount of stress.

http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_april_2009

Or this (caution long vid) http://www.youtube.com/watch?feature=player_embedded&v=NLZADAQmZDM

bear2

I am a bear

To make things worse.  Schools seem to be completely surprised by this.

 

 

 

 

 

 When,  in my opinion there is no reason for them to be unprepared.caution

 

I hate to place blame.  Blame typically does not solve issues.  And it clearly has been my experience that Special Needs Teachers are not the group that would be assigned the bulk of the  blame.  It is not reasonable for us to expect them to be everything, for everyone.  I would expect them to have read historical IEP’s  (Individualized Education Plan).  And especially any accompanying BIP’s  (Behavior Intervention Plan).   In order to anticipate and possibly avoid  issues.  I might point a small,  a very small amount.  In the direction of the AEA (Area Education Association)  I will address that in a bit.    In this particular situation I would have to lay the bulk blame at the feet of the administration.  I say this for several reasons.  To understand the first reason you have to be familiar with: 

FAPE 

 Which is long and not particularly entertaining.  The short version for this story is that the federal law requires the state to provide an appropriate education to everyone, period, no exceptions.  And that the state shall address “the unique needs of individuals with disabilities” to get this done.

 

When I hear “We dont know what to do” I can understand I guess,  to a point.  Because,  I also do not know what to do.  If I did I would fix things.  What  I don’t understand why I am not hearing “We dont know what to do.  But we have a plan.”  And they should have that plan.  Because it is not uncommon for these issues to appear.  .  “Not knowing what to do”,  in no way absolve’s the state from it’s responsibility for FAPE.closed school

 

I am particularly blessed having TG (Team Gillywacker) to work with at the Ft Madison Middle school.   Although we  are not without our growing pains.  I am grateful that I have a group of people who are both professional and knowledgeable to work with.  Even in that environment the wheels of progress sometimes move slower than I would like.  I don’t understand why when there are significant aggression issues it would take months (3 and waiting) to have an intervention team of professionals on site.  But that is not specific to that district.  I have been watching a  worse, much worse situation unfolding with friends in the Keokuk schools.

 

How can these issues possibly be a surprise? There is a vast amount of peer reviewed data that is telling us this is likely to happen.  In fact the data suggest it is more likely to happen than not.    Why if we are making calls, involving police, is there no sense of urgency on the part of the school district’s?  There are provisions in the IDEA that allocate fund’s for interventions.  Is there no one in the districts who know how to apply for this aid?  And is no-one aware how this type of stress plays out on the parents?  What I see happening in many places is the “system” is intent on making an already bad situation worse.  Is the intent to go backwards to Pre-1973 when these kids would have likely been institutionalized? That is not acceptable in my opinion.

 

Ultimately this is the way it will work out.  Parent will need legal representation, at a significant (likely Non- Recoverable if resolved though mediation) out of pocket cost.  A cost that is compounded because they already have special needs children which has it’s own price tag attached.  After that process launches.  Then the school must add man hours  involving additional  resources costing them x amount of billable hours.  And running the risk of being labeled as a “School in Need”.  Additional requiring over-site adding even more cost.  To react to something they should have been aware of and had a plan for  to start.  Something that is statistically speaking, likely to happen.   Who wins?  The parents out thousands of dollars and now have an adversarial relationship with the school? Or the school who is out significantly more in the way of tax payer dollars,  Which FYI now runs the risk of having the state looking over their shoulder.  In addition to having created,  an adversarial relationship with the parents?  Or both who still have a child,  who simply needs an education?

 

I really don’t know who to blame.  The AEA I know can advise.  But I believe that is it.  I don’t believe they have authority over our districts.  And it has been my experience that the AEA does know the law and what is required.   The people I am familiar with in our AEA know their business.  They could,  I would think.  Be better prepared to react quicker.  But the fact remains why would they allocate the funds.  If the schools are simply not going to utilize the service.  I believe if the AEA felt that the schools would utilize a tool like intervention teams.  They would then  have the needed personal in place.  To get the job done.

 

When I say “The administration is to blame”  Its really a generic statement.  I dont know who specifically I would blame.  I know Mr Dirth Fort Madison Middle School Princpal  is both extremely knowledgeable and accommodating to me.  In fact he has basically allowed, or facilitated our local team to get together and implement interventions prior to the “intervention team”.  Who I think will arrive around the three month mark of the original issue I can not to blame him.   I don’t know who to blame.  I guess I am just not smart enough, or have researched hard enough, or looked high enough.  To figure this out.

 

I would expect that it is not uncommon for parents of special need kids.  To throw their hands up “Your the professionals.  Do what you think is right.”  I am blessed having both time and limited resources. I have devoted a significant amount of time studying researching and learning the law, and my cause.   Think for a moment about the single parent,  The single parent with more than one child,  more than one job.   Or ask yourself if you can handle a couple 2K a month for lawyer fees.

 

I know writing this is likely to ruffle some feathers.  That’s OK sometimes feathers need ruffled.  Part of the point this entry of my blog is intended to illustrate that it is not all joking around all the time.  That while I want to keep the blog about how special needs is not all gloom and doom.  And I think that message is critical to our sanity.  At times getting outside our comfort zone and saying what needs to be said.  Simply cant be crafted into a funny entertaining blurb.

 

Rock on

GillyWacker

 

The talk, about talk.

selfie

Soo good looking

When you have kids.  You, with out a doubt will will be faced with discussing uncomfortable things.  From poop and masturbation.  To why someone ended up in jail, or how come uncle Bryan is so good looking.  

 

We are the ones who care. Its parents that teach kids not to use certain words.  Who teach them self censorship.  To make things worse we often don’t spend the same amount of energy on teaching when it is, or why it is OK at times,  to speak uncensored.  Kids by default don’t care “Mom are transvestites gay?”.  Most of you learned this the hard way.  When your child blurts out something in public that makes you cringe “Daddy says, you don’t pay your bills”.  Kids just don’t get it.    We like to say “You cant say that here.” or “Just ignore her. I don’t know where she gets this stuff”,  “SSShhhh!”.  Or worse we scold them without teaching the lesson.  But here is the bad news.

 

The kids are right,mouths  and we are wrong.   We need to allow ourselves to get outside our comfort zone.  And we need to do this for several reasons.   The first reason and probably the most important.  They (the kids)  need to know.  And not because they are going to be bad with money or Transvestites.  But because if we don’t teach them,  they are sure to use the limited information out of context, in less than ideal settings.  Worse case scenario, not say the really important things.  Its incumbent on us, to teach them.  How can we expect them to approach an issue.  If the words they need to articulate the issue are forbidden?  What they really need (and some of us)

 

 

  • Know your audience
  • Know your words
  • That words outside our comfort zone, are important to use at times.

 

More specific to the direction of this blog.  Saying things,  Saying the uncomfortable things,  Is something I believe we need to embrace.  Even more specifically is the need for special need parents to not feel uncomfortable bringing up issues like hygiene, escapism, self harm, and probably one of the most important. Predators.  I don’t think I have had a Dg (Daddy’s girl) school meeting where I have not brought the topic up. It is not by any stretch of the imagination something I want to talk about.meeting2

 

 I am not going to assume,  they (the school) know this is a potential issue.  I refuse to accept the typical controls that are written in the School handbook.  I want them to really understand.  To understand that this is one of the things that keeps parents up at night.  Keeps me up at night.  They have to understand that my non verbal child is a prime target.  I want them to have clear understandings of why.  They need to know that being non verbal.  Means she is an easy target.  And that a predator will know that.  With even a casual encounter.    I need them to know that statistically she is in the highest risk category.  And because of this I demand some considerations.  It is unacceptable for her to be in contact with anyone who has not been vested with the school or us.  It is unacceptable for her to be alone with people who are not in the trusted inner circle.  This is not to say that she shouldn’t interact with people outside that circle or even people unknown to us that have a cause to be in contact with her.  Just that they are not, for any reason, to be alone.  Or for that matter blind trust should not given to even those who are vested, or appear to be in our circle.  Every meeting I bring this up. Every caregiver knows my speech.

 

Last year Chloe’s teacher sent a note, and called to say.  Dg had been saying “Tallywacker” at school.  People reading this blog understand it was likely a perversion of the word Gillywacker.  But her teacher was not (at the time) aware of that.  Back on my soap box for second:  This is where we can take even the most uncomfortable of things and have some fun.  So I didn’t start out the conversation explaining Gillywacker.  I began asking who would use that word?    How I was a little surprised she (Ms Taylor) being young and all.  Would recognize the dark side of “Tallywacker”.  Some of this I did just because I really enjoy saying the word Tallywacker.  Its also fun giving Ms Taylor “the business”.  Much of it was to let her know when we talk about these things.  We are not walking into a deep dark place.chloefloor  We are doing what we should be doing, talking about it.  And it was not not a sin in our eyes to share a little laugh about this kind of stuff from time to time.  I believe we should create an environment where it’s not difficult to talk about these things.

 

For me it wasn’t enough to clear things up.  I want to establish a foundation where everyone would feel comfortable talking about uncomfortable things.  I also wanted to make clear how much Ms Taylor’s actions really meant to me.  For a parent with a child who is also a target.  It’s simply huge to know her caregivers are not only doing their job as professionals.  But keeping their heads up and looking out for my daughter as people.  Huge, Huge, Huge.  Because like any reasonable parent.  I worry when I am not in a physical position to protect.

 

At times I innocently enough, create situations.  And feel obligated to share a “heads up” with Dg’s teacher.  There were two instances this week.  As I mentioned before DG really enjoys a few of Pop songs.  During a play session she begins repeating the chorus of “I know you want it”.  I was like “Jeeeeeeeez DG!”.  Then later in the week we were playing the Gillywacker game.  For those who dont know “GillyWacker”, it goes like this.

  • Head thinker
  •  Eyes seeier
  •  Nose smeller
  •  Mouth eater
  •  Chin chopper (building anticipation)
  • Gillywacker!!!!!!!!!!! and a crazy wild tickle.

Well I had gotten bored with the standard script.  So I decided to improvise a little.  I used “Ear flappers”, and “Feet stompers” ect, for example.  A couple of days later Dg was telling her short word jokes then,  “Butt Smeller!” she screams and giggles. In my defence Dg mispronounced the word I had use.  It was of course “Butt smellyier” (Thats a real word right?) So yes,   I sent Ms Taylor a note that said she should expect “I know you want it!” and “Butt smeller!”  Just to sure make she wouldn’t be to shocked.

 

And for my newly loyal readers.  Its probably safe to say.  You can expect more uncomfortable words from me.

 

Rock on

Gillywacker

 

And a note to any potential Predators:

It is us,  hunting you.  We are not passively looking.  We are actively looking.  We know how to protect the ones we love.  Any action by you.  Will be perceived as hostile and as such will handled in a way that makes “Shock and Awe” look like a child’s game.  You have been warned.

Credit where credit is due.

One thing that I think is just huge when you dealing with family, schools, support services, and friends.  Is to give credit where credit is due.  

 

What TG is all about

What TG is all about


Before I get to deep.  I should explain WHO is a part of my team.  For the purposes here.   I will call them “Team Gillywacker” or TG.  When we think of “team” we typically consider the people sitting across the table with us.  And consultants who may contribute.  I submit that you expand the view of who your team really is.  


Without hesitation I consider my mother (who has passed) as a significant member of my team.  I also consider a Grandfather, Grandmother and a long list of others who either live fondly in my memory or simply are unable to be with me physically.  These are people I consider “At the table” with me in all meetings.  And their contributions are to me, meaningful.  There are others who are probably unaware of their place on my team.  People who’s opinions I value and those who have set personal examples for me.  TG is large and powerful.  Much of it operates outside what most would consider “Team”

 

When your working with members of your teamany member.  A teacher for example.  Even when that teacher is not doing all you think they should, or could.  Please, take the time to acknowledge what you think they are doing correctly.  Let’s face it.  Special needs is no walk in the park.   A special needs teacher?  Think about what this job entails.   Their job is to show up to work every day with a good attitude.  To not only use effective, proven teaching method’s.  But to do that in what could probably be considered one of the most difficult of teaching environments.  But that is not enough for our teachers.  Special needs,  especially specific special needs (my apologies to lispers).  Are constantly changing.  What could have been considered “Best Practice” last year may be considered a sin this year.  So continuing education,  remaining relevant in their field is a must.  The last task to understand when thinking of a teacher.  They are the “go between”.  The one person between insane parents like myself and the rest of the team on a daily basis.

 

 

Where is my ship headed?

Where is my ship headed?

Consider for a moment the students aid,  who has to have the people skills to be able to manage someone else. Through a day,  a week,  a year. In a sea of NT’s.   Who has the desire to,  at low pay.  Get up every morning and do what I am sure at times is a thankless job.  Its got to be tough.

 

Then there is the:

  • Para-Educator
  • Therapist
  • Phys Ed instructor
  • Support services like AEA

All with daunting task’s

And last but not least the Administrator. Who has to make,  what I am sure at time’s are the uncomfortable decisions.  These are the people who have to say NO.   Who have to do,  on a daily basis what we ourselves dread doing.  To make decisions on whether or not,  what we would like to do,  are really “value added” activities.   Balancing wants vs needs.  This no doubt has to be extremely difficult at times.

 

When we see these folks doing the right thing.  Even if it’s not everything we want.  We should make time to say thanks.  Draw attention, praise effort and success.  Show our appreciation.  Even if that person is in our view doing very little.  They are more likely to improve.  If they believe what they do achieve,  will not go unnoticed.

 

We should also give credit to those who indirectly give us a boost.    A good example for me is Emily and Chris Hamilton.  I met Chris when he wanted to ask me questions in regard to their daughter.  They had a situation and wanted to know if I had suggestions.  The short version of this story is by them asking for help.  I was helped.   Talking with them boosted my enthusiasm, and strengthened my resolve.  It made me work harder and longer than I had.   Its so hard at times to sustain any level of motivation.  You can see it in many of the faces of parents (and teachers) who have traveled the path before us.  It just has a way of beating a person down.   I don’t know if this is the right way to say this.  But seeing other people struggling,  with similar issues that I have.  Somehow made me feel better about things.   It encouraged me to do more.   I am grateful we met.

 

My Mothers cousin Mark and Camille Anderson.  AKA: My daughters, fathers, mothers, brothers,  son (ha).   Who I am sure are unaware that they are a huge source of strength for me.  Because what they have contributed,  is simply being themselves.  Setting a good example.  Being good and strong “Special needs parents.

 

The thing about special needs and care giving is,  It’s just not for everyone.  In no way do I wish to take away from the relevance of people who have difficulty with it.  Many of whom provide support just by the knowledge that they are in our corner.   It just takes a certain combination of desire and people skills to make it work.

 

What is fascinating for me

Aww

Aww

 is watching Nadine Glassgow provide care for Dg.  I think its safe to say Nadine AKA Nana knew nothing about Autism.  What she did know is,  that she fiercely loved her great granddaughter AKA “Daddy’s girl”  And she would not let a lack of formal special needs training get in the way of that.  There is not a thing that goes on in Daddy’s girl’s life that Nana is not a part of.  I am required (by threat of nagging) to update her on even the most mundane TG activities.  I tease Nana often because,  Well she has it comming.  But I also look for ways to express my appreciation.  Her efforts have been invaluable to TG.

 

The list of people who deserve to be told they are appreciated is long.  Too long for this entry in my blog.  And my intention is not to print a list.  My intention is to suggest that when these people present themselves.  Its not just something you should do.  It an opportunity you have been given.  Telling someone “Thanks”  is an opportunity to shore up the team and encourage the fragile system we share.  It spurs TG into doing better, greater things tomorrow.  Without a TG I am truly alone.

 

My point is.  Its truly incumbent on us, to build and support our own teams.   This my friends is sure to pay dividends in the long run.

 

I will likely call out the occasional person on my blog and thank them.  Put them on display for others to emulate.  We have been particularly blessed with what I believe are some of the strongest team members in our area.  And strong support from both family and friends.  It may appear that I am leaving out the Hawthorn, FT Mad Staff and our local AEA.  You have to understand that at this point, in my mind.  You are all  elevated to “Friend status”.  You all rock.  My sincerest thanks to you all.

 

There are times when a line is crossed.  When a team can no longer be effective. This can lead to an infinite number of possible bad outcomes.  And that should be approached in a very formal manner.   These times I will discuss later.

Making fun with Autism

For a while at least.  It seems,  I had forgotten how to have fun.  Fun became a destination.  A bar, a boat, a place.  If for example I was in the mood for some fun.  I would plan it in a way that it would coincide with a payday (since I was hand to mouth).  For something really fun.  It had to be a payday and a weekend day.  My week would be filled with what to wear,  What to bring,  and who was going.  At the right time the excitement would bring me to the moment of lift off. Loading a car with friends and the supplies.  Followed by the travel and discussions of who was doing what.  When we would arrive it’s off to the races so to speak.  Followed at least in my case by.  “What happened?”  “Did I have fun?” Fun had almost became a chore.

 

Fun finds me.   I am gently woken by Dg (Daddy’s Girl). Standing in my doorway at 7am.  She has on  boots, pajama’s and a coat.  Through my glazed over eyes I can make out the speech bubble above her head that reads, “Fun” .  She says “Go for ride!” followed by “Daddys VX!”(the name of my truck).

 
Go for ride

Go for ride

Fun has found me.  No planning, looking at the calendar,  choosing the right clothing,  no nothing really.  I just throw on some socks (and pants,shirt,ect) out the door we go.  After we get in the truck and even before we are buckled up.  We have to set the tone for the ride.   I place the blame for her bad choice of music at someone else’s feet (you know who you are).  Dg requires POP music.  “97.3 or 107.3!” she will say aserting herself as if to say “I’m in charge now”.  Typically I am the master of my radio.  Dg combats that assertion by way of a metronome strategy.  Repeating the request’s  feathering  stims into the process as needed .  “97.3 please”  chin tap and repeat,  next up “97.3 please” chin tap, hand flap, repeat.  The final Chorus goes like this “97.3 PLEASE!” chin tap,  hand flap,  forehead slap, and repeat.  I don’t typically allow it to get to the final chorus.  Dg (Like most women) feels the need to tell me how to drive.  I should add.  I am a spectacular driver without help.    “Right please, Left please, Go fast!” ect. All of this of while continuing to employ her metronome strategy to ensure compliance.  But when we are really jammin  to “97.3 please”. She switches to implement the use of her ET pointer finger and then a smile. All the time with her infectious laughing and one word jokes.   The grand finale is seat dancing.  Something that I admit to willingly participate in.

 

 

These rides are not uncommon. In fact they are, everyday. And they are not specific to me.  I would estimate 3 to 6 rides a day.  So lets check our math,  people who feel sorry for me.  That means if nothing happens during a given day.  If its just a Blah grey day.  I am having fun a Minimum of 3 to 6 times.  And that is just for starters.

 

In order to have fun.  You have to have fun.  And what I mean by that,  is you have to participate.  Many of you may have a difficult time with the following image.  But I can really “kick it with my little hommie”.  Rarely does a day go by that I can not be found “bustin a move” to “I know you want it” or “What the fox say” (hate that song).  In my opinion.  There is no way that can not be fun.

She likes to run from one end of the house flapping her arms and laughing wildly.  If that is what she wants to do,,, I’m in.  She has never really been an exceptional chaser. Although she is a pretty respectable escaper.   But guess what?  I am a good chaser.  I eventually will snatch her up, pin her down, and tickle the crap out of Dg.  If she is going to flop down on my lap,  She is getting the Gillywackers.

 

20130810_172739When the weather is good.  We will run up and down the drive,  across the yard, and roll around in the grass.  We do go to the parks.  But that has is its own storys.  When its time to swim,  Get out of here,,…Its On like Donkey Kong.

 

 

 

 

 

The thing about Dg and I would expect many kids who fall on the spectrum.  Often they don’t engage in typical play.  Other children are hesitant to engage her,  And her attempts to solicit them are often not received as intended.   But she has the energy of any child.  At times maybe more.   And she wants (I think) to interact with someone.  Often I am lucky enough to be that person.  While there are obvious differences in how she interacts with others.  She still wants that plural play.  We all do.

 

 When Dg  is not finding a release for her energy it tends to display itself in more challenging behaviors.   Both at home and School. These behaviors increase as her pent up energy does.  It is compounded this time of year when outside is just more difficult to do.  We do go out and play in the snow.  But that involves properly dressing.  It involves her staying properly dressed.  And the fact is bundled up stumbling around in the freezing cold is just not everyone’s cup O tea.   I can’t empathize this enough.  It involves her staying properly dressed

 

 

But what I think is lost on many What people may not consider.  This is fun.  It is extremely fun.  Really it probably borders on me being selfish.  If there is crap happening at work.  Or problems elsewhere.  This is what picks me up out of the dirt.  And I don’t even have to admit,  I am doing this because I had a bad day.  I can use Dg as my excuse.  “I have to entertain her now”

 

My advice is this.  If you are a parent,  an aid, a teacher, or care giver.  Allow yourself to have some fun.  If they run,  chase and tickle,  If they dance,  dance. If they stim.  Give it a shot.  Please don’t sit on the bench and watch them play alone.  Get out there and have some fun yourself.  It is instant fun,  Its free fun, and its fun.  Playing with Dg is therapeutic for me.  If your feeling old, fat, slow, or bald.  Find yourself an Autistic kid.  they’ll make you feel better about that.  If you are struggling trying to get through to them on a particular day. Take a break and play,  It may open the door for you.  I believe it is the fountain of youth.  

grandpaandDg

Its good for you, us, me.  To do something that is good for them.

 

Rock on

Gillywacker

 

Ps As I write this Dg overflows the bathroom sink causing a cascade of water into my basement office.  Sooo much fun this girl is.  It’s “party all the time” around here.

 

First Blog. About the blog

I love to write.  I have to write.   My mind becomes burdened with scenario’s, possibilities and the like.  At time’s I need to purge.  And at the end the day start with a clean slate of new dreams, and disasters. Parenting and Special needs parenting are typically the most purge worthy thoughts I have.  So expect a lot of that.

 

My blog.  Will reference my own youth.  That statement is really just an excuse to allow me to talk about something this blog is Not about.  That’s grammar. Mine sucks.  I got it,  Move on please.  Its also not about politics or religion.  I believe much of both these things are less about including others.  And more about excluding them.   My blog is really a story about me.  I hope at some point the kids can write there own stories. I dont think it’s my place to imply I can write that for them.   I have done the things I have,  out of the selfish desire to leave a legacy.  To end my journey through life thinking that I have done right by my children.  I hope the blog can entertain and help be at least a small light for parents and special needs parents.

 

I was not a particularly good kid myself.  Nor a good young adult for that matter.  In spite of having great parents of my own.  So some of the blog will be about me evolving into my image of a dad.

 

Having kids changes a person.  At least it changed me.  All I want  for my kids is to be happy healthy and wise.  I want for them, a path that allows them to be the people they enjoy being.  I want to provide them with the tools they need.  And maybe most of all.  I want them to have an easy smile.

 

Being my first blog entry I am not really sure the proper way to begin.  My casual passion is about having fun with things that aren’t typically considered fun. Its the spark of fun that hides.   I see it with well placed irony and sarcasm. Or in the laugh / cry moments.   I revel in making fun of people and things in a way that they also, can find the humor in “The high road of humor”.  I believe with all my heart and soul that family should be fun.  And at times fun has to be worked for.  Sure there are times in a family when there is, “poop on a wall”.  But hey,  even that can be funny in time. Lets face it there are only two ways a person can handle “Poop on the wall”

  1. “POOP IS ON THE WALL ARGGGGGHHHHH!”
  2. Or “Hey,  Guess what I found on the wall?”

I also hope to enlighten from time to time. To share some of the more formal parent / special need parent training I have acquired.  I will speak about what ” I have had success” with.  That does not mean I am remotely an expert.  Just what worked for us.    I will breech a couple of “soap box” topics.  And you may even find me on a rant occasionally.

 

I am writing for fun.  I do fantasize that the blog may evolve into a source of income that would allow me to work from home and devote more time to special needs causes, my kids, and also to have cool car’s, get hair implants and have fantastic tropical vacations .  But for now at least.  Its just that, a fantasy.

 

My second and more studied passion is special needs and parenting in general.

 

 

Sooo Cool

Sooo Cool

My son, Code name Green,  is a NT (Nero-typical) 13 year old.

tarzan2

How can you be mad at Tarzan

And much like myself at his age already “Know’s it all” .  We keep pictures of him from his baby years through toddler, hung on the walls.

They keep him from being duct taped to a chair or sold to Gypsies.   Rarely does a day pass that I don’t come across a felony avoiding picture.    Although I have found that if I take the time like any good parent.  And listen, really listen.  Using all the techniques like “Active listening” getting on his level and such.  I find that he is almost completely impossible to talk to.  I think his goal in life is being “Green hoodie wearing man”  I can explain to him it’s 100 deg f out.  “wearing the hoodie”  In the pool?  “wearing the hoodie”  Core temps?, Body odor?, ect.  “wearing the hoodie”. He has a secondary goal of confusing us into submission I.E.  “I couldn’t clean my room,  because you kept nagging me to clean my room”.   One of our favorite activities is trying to scare one another.  Yes probably not the most well thought out thing I have ever done.  But it’s such a rush when his little knees fold and he tries to force his feet to run.   He, like his father (me) is clearly ADHD.  And I know many parents say “we don’t want to medicate our kids.”  Believe me when I say the choices were that, or restraints.  It is also my understanding (from people who know) that the apple did not roll far from the tree.  More on him throughout the blog.

 

My daughter is the sweetest, most cutest 11 year old in the world,  Ever,

Daddy's girl

Daddy’s girl

 

who also happens to be Autistic.  Although it is not completely clear.  I would say she falls somewhere in the middle, of the middle, of the center, of the spectrum.  When you think of Autism and traits associated with that.  She has most,  if not all.  Because of this she has many labels.  From ASD to MR and then there is my personal favorite label “Daddies Girl”.   Ironically it appears that one of the most challenging things ever in my life.  Is also the most rewarding.  Autism is a part of who she is.  And the truth is I would miss her quirks if they were gone.  I would miss her look when I stand at the threshold of her doorway.  Looking at her angelic face holding the last blade from the ceiling fan in her hands.  I had watched her from my car outside her window tear off the fan blade as she jumped from the dresser,,,, to the bed (across the room).  And yes this was completed one blade at a time. At this point I,  of course am Obligated to say.   “No more jumping and tearing off fan blades!” 🙁  My guess is that the fan was causing some sensory issues.  And she handled it herself.  Much like she handles a lightly loose tooth herself.    I would also miss her random one word joke’s like “Cheeseburger!” that bring us endless joy and laughter.  Or her random dance moves.  If I were to make a wish,  and change something.  It would only be that joy, happiness, and success come easy for her.

 

My wife and I are more like supervisors or managers.  We have a functional working relationship.  In all likelihood I will not talk to much about that on the blog.  And I think there are several legitimate reasons for that.  First,  she can read.  Second, we occasionally disagree.  Third, she can read.  So in my best effort to keep the peace.  I will not talk much on that subject.  Other than to acknowledge that due to the travel requirements of my real job.  Much of her time is spent basically,  being a single parent of a teen and a special needs child.  Not a small task by anyone’s definition.

 

On to the soup and potato’s of the blog.

 

What is a GillyWacker?  I don’t know who invented the term.  My dad taught it to me and it goes something like this:  Head Thinker,  Eye’s Seeier,  Nose Smeller,  Mouth Eater,  Chin Chopper,,,,,,,,,,,,GillyWWWWWWWWWWacker! wildly tickling whoever is the intended victim.  I believe my daughter currently holds the world record for most Wackered.  When you understand that.  You understand that GillyWacker is never far from my mind or my heart.