GillyWacker

Daddy's tool for the Autism blues

Posts in the Getting real category

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.

 

 

 

 

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

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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

 

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.