Are You NORMAL Enough?

If there's one thing that grates on my nerves, it's hearing "Oh, he looks so normal!  I see nothing wrong with him...  You're being too hard on him."

And then Dayton does something that hurts someone.  And discipline is expected.  And I don't wanna give it.  And I see other kids not being disciplined for hurting my son.  And I don't like it.  And the other kids annoy the ever living $#@! out of me.  And the kids actually look for things to get Dayton in trouble.

No, I'm not imagining things.  Before Dayton got grounded, his little seven year old buddy came running in tow with another kid whining that "Dayton picked his nose and wiped his finger on his pants."  Seriously?!  Sitting with his mom, I looked him straight in the eye and said:  "Seriously?!  That's what you came to squeal on Dayton for?  Get out of here!"  His mom, my friend, did NOT look impressed.  Oh well.   I'm tired of the chihuahua barking at my heals, telling me every single time Dayton goes pee, wipes his face, or picks his nose.  Enough already.  Maybe I'm getting fed up with kids in general, or maybe it's the stress talking.  I have been going through quite a bit of stress lately, haven't I...

Anyways...  Yes, Dayton looks normal.  He's a beautiful child, with blond hair and light green eyes, almost blue.  Doesn't change the fact he has autism.  That's why it's called a spectrum.  Dayton fits on the higher functioning end of the autism spectrum (diagnosed with PDD-NOS), but less functioning than someone with aspergers syndrome.  He is cognitively delayed, which means it takes Dayton twice as long to learn something, which means he's behind academically, which means he needs more help in communicating, etc...

Maybe I am a little more protective of him than the average mom.  Maybe I am a little more apprehensive of letting him play outside with his friends without me being present.  Maybe I am a little more anal retentive than I should be.  Maybe I intervene too much with his friends in order to prevent a physical fight or melt down for Dayton.

It's even more frustrating when a friend tells me that I'm too involved with Dayton's play with his friends, or that maybe this is just who Dayton is...  it's a personality "thing."

Really?  A personality thing?  Seriously? 

I hate the term 'normal,' but here we go...

Dayton is cognitively delayed, making him academically behind his peers, yet he is normal enough to know it and feel embarrassed enough to have a melt down.

Dayton's communication skills are delayed, and he has a problem expressing his feelings to others, yet he is normal enough to know when his peers are getting annoyed with him, interrupting him constantly so he can't finish telling them what his problem is, which makes him blow up and throw a fit.

Dayton's got swag like his big mamma.  We tend to trip over air, which means he's not very coordinated and he's normal enough to know that the kids are laughing at him.  This makes him not want to participate in playing sports like soccer.

Dayton needs to be explained the rules to a game, or he'll make his own.  If you break the rules, he freaks.  And he's not "normal" enough to understand that people break rules and cheat ALL the time...

Dayton can't handle loud music, it hurts his ears!  He has sensory issues that most of us don't.  What would you do in order to avoid pain?

These are just five examples, there are many more.  But I'm sure you get the idea.

Personality types are completely different from deficits.  Just sayin.  Like my personality...  I'm a giver, a care taker and a fixer.  I have to fix everything and everyone.  If someone's sad, I have to get them to smile.  I'm a people pleaser, and can't stand it when I feel someone doesn't like me.  I mean come on!  I'm awesome, right?!  As a parent, I don't want my boy being looked upon as a trouble maker or a bad kid.  That's my 'personality.'  I know that sometimes I can be overbearing, and that's OK.  I know as I'm doing it that it's something I can continue or should stop and I can.  Dayton on the other hand has no control over his 'personality.'  That's the difference.

Anyways...


Consider yourselves hugged,

Lou

I Could If I Would But I Can't

At the core of the problem in today's school system of inclusion is "belief."  Our kids on the higher end of the autism spectrum disorder just look too good, therefore they can't possibly have deficits or needs.  They're a bunch of spoiled brats who don't pay attention and choose to throw temper tantrums to get out of doing their work.  They're a menace to the classroom and are constantly interrupting important lectures.  They refuse to fit in with the rest of the kids, and love to physically fight their class mates.  This is NOT true.  Unfortunately, this is pretty much what the current school system thinks of our kids. They don't BELIEVE that our children are "neurologically different."   Our kids can talk, walk, run, and sit just like the rest of the student body.  When they don't, the school staff believe that our kids don't do as expected by their own choice.

If our children wore leg braces, you'd have teachers and aids ligning up to help them, there would be no doubt as to their deficits and need for help.  People in general are just more apt to believe there's a problem when they can SEE the problem.  PDD-NOS is not something you can visually see, neither is high functioning autism or Aspergers.  When the problem is visual and obvious, people are just much more likely to HELP.  The presence of intelligence, strengths, and actual talents make it even harder for teachers to be believe there are real, concrete deficits.

No parent wants to think of segregating their child.  Segregation brings horrible pictures to mind of "No blacks allowed," and "whites only."  But the fact of the matter is, our kids are horribly misunderstood.  Who's fault is this?  Certainly not the parents.  Most parents are more than happy to share with their child's school things that work for their children and things that don't.  I know I most certainly do.  The problem is that the school staff really don't have the time to listen to what I have to say, as I am not an expert on the subject.  "They," on the other hand, are well meaning "professionals," who know what my child needs.  Their experience and expertise on what works on typical children is what they believe will work for my son.  And then they wonder why they have problems...

The most frustrating part of raising a child with a neurological difference, such as autism, aspergers and PDD-NOS, is not the child themselves...  it's trying to convince others the enormity of the child's deficits.  Deficit areas such as language (understanding rhetorical questions), sensory issues (Dayton can't certain sounds, for example music class is super painful for him, or the feel of new socks), theory of mind (thinking about how another person thinks or why they react they way they do, for example emotions), problem solving, anxiety, consistency in their scheduled days, social skills, play skills, motor issues (Dayton is 9, and he still can't tie his shoes because his fingers can't manipulate the shoe laces), spacial orientation (where the body is in space, for example co-ordination).

If inclusion in our school systems is to work, I think it is vital for them to understand these deficits and BELIEVE them.  Their disbelief is not only affecting our children, but the typical children as well.  Think about it.  If a busy classroom with colorful walls overstimulates my child and he has a melt down, it affects the entire classroom.  The one most affected is my child along with me, since he will now be suspended and I have to leave work to go and get him.  My boss is not pleased at all the work I am missing and my students also suffer the consequences.  When a teacher uses an idiom such as "hold your horses" and my son responds with "what horses?" the teacher automatically assumes Dayton is being disrespectful and sends him to the office.  Dayton of course throws a fit because he's answered her question and doesn't understand why he's being sent to the office.  I am called to pick him up AGAIN. 

By the time I get to the school, Dayton is furious, has punched the walls, pushed teachers and children out of his way because he's super frustrated at trying to understand what he's done wrong and no one is answering him.  He feels picked on and not important.  In his anger he screams, scaring the children around him.

Here's a perfect example of total and complete miscommunication between school staff and Dayton from last February:

Little Johnny has a hole in his back pack.  Dayton sees the hole and he just can't help himself...  He sticks his finger in the hole and rips the back pack further.  (Impulse control deficit, this is not an excuse, but an explanation as to why he did this).  Dayton's teacher and aid are standing across the room watching Dayton do this.  The teacher the approaches Dayton and asks him "Dayton, did you rip Johnny's back pack?"
Dayton:  "No."  (Language deficit.  Dayton has answered the question asked truthfully.  He is literal.  He did not rip the back pack, it was already ripped.  Dayton is not able to articulate this).
Teacher:  "Yes, yes you did, I watched you do it."
Dayton tries to back away from the teacher, but she follows.  In order to get away from her he moves a desk.  This is viewed as "aggressive behavior."  The aid now approaches Dayton from the other side and the two women figure they can corner him.  Can you see where this is heading?  

Dayton's throat was so sore, he couldn't talk or eat for a few days after the incident.  I had to force him to drink.  He had lots of smoothies and milkshakes as meals.  Naturally, I kept him home for those days.

Inclusion...  does it really work?  Not for us.  It's been a literal hell.  A facebook friend said it perfectly:  "There are two types of inclusion, genuine and cosmetic.  What our kids are getting most often is cosmetic inclusion.  They're in the classroom, and it all looks good, but that's about where it ends."



Consider yourselves hugged!

Lou