Has Special Needs Inclusion Gone Too Far?

To integrate or not to integrate...  A question rarely posed to a parent of a child with special needs.  I certainly don't have an option, thanks to our fantastic government.  You would think that as a parent with a child on the autism spectrum, I should have a choice at least in the matter, but no.  No body gives a crap about what a parent NEEDS for their child.

I'm not sitting here talking about what I WANT for my son.  I'm talking about what I NEED for my baby, actually, what Dayton NEEDS for himself, not what I need or want.

I am very fortunate that Dayton has a teacher this year that 'gets' him.  But it wasn't always so...  And all it takes is one bad teacher for the house of cards to fall...  I've had two years of literal hell, feeling as though I was going to lose my mind, powerless to help my son in school, powerless to help the teacher or his educational assistant.  Feelings of absolute rage when the school principal decided to call the police on my then seven year old, fifty pound boy, the guidance counsellor calling CFS twice, and the shame and ridicule that I felt came along with those decisions.  I know I'm not alone in this.  I've met with other parents of children on the autism spectrum who have been mortified and gone through the very same issues as myself.

Is it really fair of the government to expect the school to know how to integrate our kids with special needs?  I'm not just talking autism here, but any disability.  I don't mean to sound rude or disrespectful, but I think there is a different expectation in regards to integrating a child not able to walk compared to a child with a cognitive disability.

Is it fair to expect all teachers be able to teach braille to a blind child?  What about sign language to a child that can not speak?  Do all teachers posses these skills?

How about cerebral palsy, spina bifida, epilepsy, down syndrome, mental retardation, ADD, ADHD, speech and language impairments, traumatic brain injury, pervasive developmental disorder, autistic disorder, learning disabilities, etc...  Are teachers supposed to know about every single disorder?  Are educational assistants?  Are principals, guidance counsellors or resource teachers?  Who exactly in our schools is supposed to know every single childhood disability in order to teach the rest of the school when it comes time to integrate a student with an individual disability?

Trust me, segregation is far from what I WANT for my child, but I do want the best education I can get my hands on for him, which begins with a knowledgeable teacher.  This is not meant to insult any of the teachers out there, please understand this.  I mean no disrespect.  Society NEEDS my child to become a contributing member of society, not a burden.  I have very high hopes that my son will be contributing to his generation.  But there are others out there who may not be so fortunate to have a positive outlook on their child's future.

Does a fifteen year old girl with the cognitive skills of first grader truly belong in a grade ten classroom?  Is it really fair to this girl to have to sit through seven hours of social studies, math, English, and metal work when she can not read or write?  Who's interest are we really focusing on here, the student's human rights or her parents' warm fuzzy feelings of having their daughter in class with her peers?  Does society really think this girl is happy with her social promotion?  And how about the teacher?  Do we really expect her or him not to lose their "cool?"  In a class of thirty students, chances are this teacher is already making twenty different class lesson plans...  As a former instructor myself, just having to create and re-create the one lesson plan was like getting a freaking root canal.  I can't imagine having to do twenty...

My son Dayton is in grade four.  He is finally beginning to learn how to read and write.  I wanted him to repeat grade three last year, but the principal refused, probably because she really had no choice, did she?  As much as parents get upset with their school teachers, principals and school divisions, at the core of this problem lies the government.  They make the law, and they're the ones that are not giving the teacher, principal, school division or the parent for that matter, the choice to do what is best for our children.  In the mean time, the government hides behind the schools.  As a parent, I don't get to talk to our premier Greg Selinger, do I?  Noooooo...  I get to throw my temper tantrums at the school staff and school division, right?  They're the only ones I get to speak to.  Trust me, I know first hand.

Me, freaking out on speaker phone with the Premier's office for transferring me yet again to Manitoba Education who is absolutely useless...  Take charge Mr. Premier!  Answer your phone!

It all boils down to social promotion...  It does not seem to matter to our government that our kids are not learning.  All that matters is that no child is left behind.  You know, that warm, fuzzy, lovin' feeling.  All the funding in the world is not going to help our kids if the government doesn't put some help in place for our educators to have at their finger tips, does it?  It's like going out and buying a low fat cookbook, but unless I use it, I won't be losing weight, will I?  That reminds me...  Gotta go through the cookbook and make out some menu plans and go grocery shopping...  When is government going to wake up and smell the coffee here?  I'm all for inclusion, but lets be realistic here with what we're dealing with people, shall we?

Social promotion.  Education.  Society NEEDS education.  The days of do your work, learn in class, do your homework and pass your tests are gone.  In place we have social promotion, to spare our children's feelings? I'll tell you what will raise our kid's self esteem...  EDUCATION.  My son is proud of himself for passing his spelling test today.  He got six out of six words right.  Yeah, that's right.  My baby rocked his spelling test.  But last year...  last year my boy had low self esteem, fits of rage where he questioned me why bother going to school, he was too stupid anyway (his words, not mine).  Last year's teacher wasn't the calibre of teacher Dayton has today.  Perhaps I'm a little too harsh, I wasn't really there to observe.  But I can tell you that this year, Dayton understands his teacher.  Last year he didn't.  Could last year's teacher been overwhelmed with too many lesson plans to keep up with, and this year's teacher doesn't have nearly as many lesson plans to create?  Is this year's teacher's assistant more on the ball, more experienced with autism?  Or has Dayton somehow found that magical button of compliance?  There are so many things that could be different, or a combination of things that just fit into that mysterious, multi-coloured  puzzle.

Our kids may have challenges, they may have a disability, but they're far from stupid.  They know when they're truly included in their education and when they're being patronized or simply tolerated.  So perhaps it's a combination of blame, the government and the teacher.  I think mostly the government though.  I like to blame it all on 'the man.'


Consider yourselves hugged,


Lou

Serenity For You And I

How many of us would like to feel serenity in our daily lives?  Especially those of us with kiddos on the autism spectrum?  How often do we miss the coming of spring, and driving down the road we one day notice that the trees have grown leaves?  I've done this many, many seasons of spring.  Each year I drive down the road, notice the leaves and wonder to myself:  "how did I miss this miracle?  Where the heck was I and how did this happen?"  Each fall I wonder:  "ummmm, why is it so cold all of a sudden?"

This is a sure sign that I'm under stress, very busy, and need to stop and "smell the roses."  Funny, because my home still needs cleaning, the dishes are never ending, and I haven't seen the floor of my laundry room in ages.  Until, that is, this past spring, and this new fall season.  Since being off work from February, I actually did get to see the buds come out on the trees, and now I'm enjoying my favorite season of all - fall.  But my home still looks like a hurricane came rushing through it.  I'm no Molly home maker.  Can't bake either.  I'm going to make a horrible grandmother one day, if God wills it.  But it really isn't my fault, you see I'm only half OCD.  Because by the time I'm getting halfway done with something, my ADD kicks in and I've got nothing done.  Today just happens to be the day that my OCD and ADD don't want to get along, so needless to say, I still have a messy home to clean.  It's so bad...  I thought I saw a big huge bird flying off my roof tonight, but it was the cleaning fairy screaming "oh hell no!!!"  Oh well, there's always tomorrow.

Then there are the days where my OCD and ADD actually do get along, and ADD decides to take a break.  This usually happens when I'm outside playing with Dayton.  Then a bossy, mouthy child decides to ruin my boy's play time, which raises my stress level as I can see Dayton using his monotone language, which means he's not happy anymore, and he could strike out at a the nincompoop little brat who can't keep his mouth shut.  It's always the same kid.  I wish he'd just step on his lego and fall already.  The kid reminds me of an angry little chihuahua:  Yippy, snappy, annoying as hell, must have his own way and mark his territory, and all I wanna do is slap him.  Dayton always beats me to it though.  And than chihuahua's daddy gets upset with ME.  Every time.  "Well jeez buddy, he keeps coming back for more.  Maybe if you taught him some manners, this wouldn't happen all the time."
"Your kid's the one with autism."
"Yes, and your son has an anger management problem, what yours again?"
"You need an attitude adjustment."
"I don't have an attitude, I have an extraordinary vocabulary that you can't possibly comprehend."
"Your kid's the one with autism."
"See what I mean?  We've gone through this already.  Yes, so Dayton has autism, if he didn't, than I suppose you would chalk up his slapping your son as 'boys will be boys,' right?  Your kid is angry and calls Dayton names.  I think he's the one in need of an attitude adjustment.  And the next time you approach me, you need to ask yourself:  Did she take her meds yet?  Because I haven't today, and as you can see, I'm feeling pretty feisty."
"That sounds threatening, I don't like the tone of your voice."
"Well, wash my mouth out with chocolate."
"You're rude!"
"Some call it rude and disrespectful, but I call it choosing to stand up for me and my babe."

So, even though my life is quite less hectic this past year, I still have urges to smack stupid people.  I do try to use little words to explain Dayton to them, and sometimes I even pull the crayons and paper out, since some of them prefer pictures.  But there are days where I witness soooo much stupid, my brain cells want to commit suicide.  And this 'dad,' is one of them.  I've held my tongue for so long, I finally just blew up and let him have it.  My dad would call this "stink'n thinking patterns" or STP.  Every time I get cranky with someone, I think of how dad would be so disappointed in me...

Normally though, I do try to reserve myself and say the serenity prayer.  For those of you that don't know it, here it is...

God grant me the serenity
to accept the things I can not change;
Courage to change the things I can;
And wisdom to know the difference.  

Although most widely known in its abbreviated form above, the entire prayer reads as follows:

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking as He did this sinful world,
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His will;
That I may be reasonably happy in this life 
and supremely happy with Him
forever in the next.
Amen.

I know that saying the abbreviated serenity prayer has kept me calm in the past.  I need to start saying it more often on a daily basis.  Living one day at a time; Enjoying one moment at a time.  In other words, enjoying the buds in the spring, and the change of color in leaves in the fall...



May our Heavenly Father grace you with serenity,

Lou

Finally, Sarcasm!

I hope everyone's long weekend was as fulfilling as my own.  I love camping, so our family decided to go camping at the wonderful West Hawk Camp Grounds.  While we didn't get to see any fireworks, we made our own July 1st celebrations a smash hit with the rest of the campers surrounding us, making blooper bombs, and pouring some copper and rubber pieces in the fire to create beautiful red, green, blue and purple flames in our fire pit.

Getting ready for camping with a child on the spectrum is no small feat.  I grabbed my large suitcase, and made sure to pack enough clothes to last as a couple of weeks.  Dayton's a messy feller who loves water (see where I need to pack in abundance?).  I packed us six towels for the three day camping trip, which came in super handy because grandma and grandpa forgot to pack their towels.  And grandpa laughed when he saw my heavy suitcase!  Who's laughing now gramps?

Packing for me is  a complete nightmare, with or without autism.  I see myself as a poster child for adult ADD.  I'm to sedentary to say ADHD.  I'm so not organized...   I either start packing waaaaaaay to early, or pack the last minute.  It's horrible and never ends well.  When packing early, I play this game called add and subtract clothes.  We end up with less of what we need and too much of what we don't need.  When packing last minute, I swear, everything but the kitchen and bathroom sink end up in my suitcase.  Snow pants, shorts, jeans, turtle necks, tee shirts, tuques and swimming shorts for Dayton...  Taking care of Dayton's needs comes first.  You just never know if we hit a snow storm in the middle of July...  I always end up leaving the trip wondering if I packed MY medication, MY panties, My swim suit...  You get the idea...

Our second day camping, grandma has the fire going and needs to use the lady's room.  I'm tired and aching from my kidney stone (I ended up in the emergency room once coming home from camping, the kidney stone is round with spikes, making my kidney bleed and giving me a kidney infection) and all I want is a hot cup of coffee...  I turn my back for one minute, just to pour creamer in my coffee cup, when I hear grandma screaming:  "Dayton!!!  What are you doing?!?!"  I turn back to Dayton...  He's holding a newspaper, lit on fire, walking back to the fire pit from the edge of our camp spot.  What the hell...

It appears he wanted to set the grass on fire.  Seriously?!  Why?!  "I dunno," says Dayton.  This is life with autism.  Constant supervision is necessary at all times.  I rely on family and friends to keep an eye on Dayton and make sure he's playing it safe. 

Needless to say, Dayton was grounded.  Right away.  How do you do this when you're camping?  The only option I had was to have him sit inside our camper on my bed.  When I made lunch, I had him sit on a camping chair, with his lunch on his lap, facing the camper door.  Thanks to grandma.  She's just so smart.  She comes up with some really great ideas in disciplining Dayton.  She totally 'gets' him.  I don't know what kind of reprieve I would have come up with without her.  For the rest of the camping trip, Dayton was not allowed to sit close to the fire.  He had to sit either behind me or his father.

We still had fun camping.  Our first evening out, I finally got to see the Northern Lights dance in the sky for the first time in my life.  We got to see fire flies in the tall grass bordering our camp site.  What a beautiful, natural light show it was for all of us.  I haven't seen fire flies since I was a child, and Dayton's dad got to see them for the first time in his life.  Dayton actually used figurative speech!  I was thrilled.  He said:  "I thought my eyes were playing tricks on me mamma.  Sometimes, I close my eyes and see little lights, sometimes they even have colors."  Hoooooooray!  Well done Dayton!!!  We fed the deer, who were used to us city folk coming to visit.  I actually got to put a bun in my mouth and have the deer take feed off it.  It was amazing!

The most fun we had was Dayton finally using sarcasm - intentionally.  Most parents are appalled when their child becomes sarcastic, but parents of a child with autism almost celebrate!  I know we did!

Dayton's father, the annoying schmuck (I say this ever so lovingly), really got under Dayton's skin.

 

Glen:  "You know what I'm going to do after this Dayton?"
Dayton:  "What daddy?"  (all excited).
Glen:  "Put my cup down."
A minute later...  Glen:  "You know what I'm going to do after this Dayton?"
Dayton:  "What?"  (all excited).
Glen:  "Put my cup down."  A few seconds later, he brings the cup back to his lips.  "You know what I'm going to do after this Dayton?"
Dayton:  "What?"  (a little annoyed).
Glen:  "Nothing."  A few seconds later...  "You know what I'm going to do now Dayton?"
Dayton:  "What?"  (a little more than annoyed by now).
Glen:  "Nothing."
Dayton is visibly annoyed and starting to get angry with Glen.
Glen:  "Just kidding, I'm going to pour some milk in my cup."
Dayton:  (Full of sarcasm and uses a voice to match it)  "Ooooh, good for you dad, can I watch?"

I laugh so hard, I'm sure my kidney will explode.  My heart swelled with pride.  He may look like his dad, but at least he's going to be as sarcastic as me!  Well done Dayton!


Consider yourselves hugged,

Lou

PS. In case you're wondering, we're all modeling the same hat.  We are just a smidgen on the redneck side.  I had just bought it, and everyone loved it, so we thought we'd have a little fashion show.  Hope you enjoyed our trip!

A Lesson Learned

Well, maybe two lessons learned...  The first lesson I learned is to never, ever ask Glen to get Dayton a hair cut.  NEVER.  Take a look at his idea of a hair cut...

Yup, he shaved my baby's head BALD!!!  Seriously!  When am I going to learn that if I want something done right  to just do it myself?!  Ugh.  Oh well, at least the hair will grow back.  But perhaps when you hear about my second and main lesson learned, you may think that I should keep Dayton's head bald.

For those of you that have met my boy, you know he's tall and THIN.  I don't mean thin the way all women strive to be, I mean thin as in bony.  My babe is a wiry lil'man, and I don't think he has an ounce of fat on his body.  It's skin, bone and muscle.  He doesn't even have baby fat around his face, and he's only nine years old.  Dayton is self conscious of his body, and even in summer prefers to wear jeans instead of shorts.  He doesn't like his legs exposed for people to see as they are long and bony.  Dayton always wears a shirt in the summer, not only is it a rule for him to wear clothes, but he's self conscious of his visible rib cage and spine.  Swimming in the pool is a nightmare at times, as he has no choice but to go shirtless and in swimming shorts.  Thank goodness he loves swimming so much that he doesn't care about his image.  Dayton is also very fair skinned, so this new hair style makes him almost seem sick.

Anyhow...
I had to go grocery shopping with Dayton yesterday (made sure he wore a baseball cap to cover the bald head), and made the mistake of going to Super Store.  I didn't bother with a shopping cart, as I was just supposed to grab a new Bayblade for Dayton, milk, skinny lattes for my tassimo coffee machine (yum!!!), and some butter.  Should have taken me about ten minutes...  Wrong!  It's been a while since I've taken Dayton shopping with me and I forgot it takes three times longer to shop when he's with me.  By the time I got everything and was standing at the cashier's line up, I vowed to never again, no matter how short I 'figured' the shopping trip would take, to attempt shopping without the shopping cart.  My arms hurt, my legs hurt, my kidney was ready to rupture out of my body and slap me across the face, and my jaw was clenched so hard, my face hurt.  As we're standing in the loooooong line up, Dayton begins to be bored.  He's squirming, he's laughing at his own jokes, making faces and repeating a line from the sitcom "The Big Bang Theory," where Sheldon is saying "mamma smokes in the car, Jesus is OK with it, but don't tell dad."  Dayton repeats this line over and over and over.  Once bored of this quote, he starts parroting a quote from Fairly Odd Parents:  "What's the worst that can happen?  You're grounded!"  Dayton's laughing and clapping his hands and doing a little jig beside me.  Another parroted joke comes up:  "What do you call a guy with no arms and legs in front of a fire place?  Burney." 

There are two women that look like they're friends, standing a couple of people ahead of us in the line up.  They keep glaring back at Dayton, whispering to each other and shaking their heads in disapproval.  Aha!  Mommy Radar has picked up on two Grocery Store Snipers, twelve o'clock, straight ahead.  My head whips around to face the snipers, and they face me.  Eye contact.  I' about to whip out my grenade launcher when I remember Dayton's hair cut and my close friend's comment on it:  "He looks like a cancer patient."  I squint my eyes at the snipers and brush my hand against Dayton's baseball cap.  I knock it to the floor...

I turn my attention to Dayton.  "Would you like to see how your cap looks on mommy?  I bet I would look pretty funny!!!  I doubt it would fit my big head!"  Oooohhh...  A challenge...  Dayton loves a good joke and a challenge.  I bend at what used to be a waste and lower my head to his face.  "I dare you Dayton."  Dayton gets all serious and puts the cap on my head.  I stand tall, and he laughs at me.  The snipers look like they'd like to aim and take fire at me, but look down at Dayton...  "Awwwwww...  are you mommy's big helper?"  One of them says...  I kid you not.  The snipers dropped their weapons and practically cuddled my babe.  Are you serious?! 

So, the moral of this story my friends, is that if your child 'looks disabled,' people make exceptions for their behavior.  If the child has an invisible disability like autism, ADHD, ADD, global delays, FAS, fragile X, etc.., people perceive your child as a hooligan.  "He's just a bad kid."  In their minds, they're thinking that as a parent, we're not disciplining our children.  I know Dayton's school's staff has said to me many times...  "he needs some discipline."  And these are people that are supposed to know about autism. 

Dayton LOVES his new look.  "I look just like daddy!!!"  He's in no hurry to grow out his hair.  I'm wondering if I should let him enjoy his new look for at least the summer, grow it out for school picture day, then shave it off again?  It seems people are much more accommodating...  I'll let you know what I decide.

In the mean time, like my dad always says, consider yourselves hugged!


Lou