Wanted: New Friends

My best friend and I broke up almost a week ago now, and I miss her very much.  The silver lining (yes, remember I always try to look for the silver lining, otherwise I'd lose my ever living mind) has been found to be less stress and a lot less drama.

I no longer have to play referee between her seven year old and my babe.  I swear little E's mission in life is to get Dayton in trouble.  I know this because of the incident that caused the demise of our friendship:  the boys are playing hockey outside with another little boy Dayton's age.  It's 8pm, which means it's dark outside.  I'm visiting the other little boy's mom and standing on her balcony, the only parent watching the boys.  Little E is screaming:  "Dayton!  Don't hit me!!!" while Dayton is chasing after the hockey puck, running farther and farther away from little E.  I call out to E and tell him this, and he tells me to "shut up.  I don't care."

I'm done with working my butt off to not offend the neurotypical kids around us when they themselves are inconsiderate, rude little pukes.

So here's what I'm wanting to do...

I want to rent out a gym, probably in St. Vital to make it central to everyone living in Winnipeg.  I'm thinking of every second Sunday afternoon for about an hour and a half.  I have no problem making this a free event for everyone, as I'm not after making a buck.  I will pay for the gym facilities for the year, providing I have enough of a turnout.  What I want from you is to tell me if you're interested in participating before I spend the money I could use somewhere else...  

Here's how I see it turning out:  

We meet every second Sunday.  The kids have two options:  play in the gym or play board games in the lobby or maybe do some crafting.  Parents have coffee while volunteers are with the kids.  Naturally, anyone supervising the kids will have a criminal record and child abuse registry check.  I will go and have this done for myself some time this week.  

This will be a time for parents to have a break and mingle with other parents, support each other and get ideas.  There is no excuse of "can't find respite, or can't afford it."  Your children with autism will have the opportunity to interact with other children who will accept them because they 'understand' them.  They will be interacting naturally with their peers in a social setting without the fear of being bullied or discriminated against.  Siblings and friends are allowed to come and participate in play as we want to encourage friendships and support with neurotypical children under the supervision of a caring, understanding adult who's main purpose will be to support the children with autism to reach out to others.  

Your child's placement on the spectrum may be important to you as a family, but not here...  We will include everyone.  Participation of the children on the spectrum is minimal:  if they chose to interact, great!  If they are comfortable to sit back and watch, then that's fine too.  The point is not to excel at something, but to feel accepted, something most of our kids don't feel at school or on the play ground. Who knows, maybe by not participating but by sitting and watching, they'll meet others on the spectrum doing the same and enjoy each other's company!!!   Everyone needs to get out of the house, right?  Let's create a sense of community not just for our kids, but for us parents too!


What I need from you:


All I need from you is to email me at autism.diva.help@gmail.com if you're interested in attending.  


If you're interested in volunteering, please let me know this in your email as well.  I am prepared to pay for your criminal record check and your child abuse registry check, so this will be of no cost to you.  Consider this my Christmas present to you.

Super Dad and I are thinking of a name for this group, and he's come up with a really good one, but we'd like to hear from you in your email with some suggestions too!



Consider yourselves hugged,


Lou

A Quiet Christmas

To be honest, I'm looking forward to a nice, quiet Christmas.  My dad thought of coming to visit from BC, but decided to stay home with his beloved new laptop that's given him new lady friends to harass on Facebook and Skype.

It's always the same with us...  A few days before Christmas we go a little in anticipation, especially my beloved babe.  Two years in a row now he ended up at his great aunt's house and opened all the Christmas presents as his dad and aunt were playing cards upstairs in the kitchen.  Dayton's not the kind of kid you just leave to his own vices. But the family just doesn't seem to learn from their mistakes and it repeats every year.

"Oh, he just needs a little discipline."
My response:  "No, he needs a little attention when he comes over for a visit!"

Christmas time is the time of year where everyone gets together and seems to forget that Christmas is about he KIDS, not the ADULTS.  Don't get me wrong, I'm an adult, and I love Christmas.  The point of Christmas is to celebrate Christ's birth first, then enjoy the company of the people we love.  The presents are a major distraction from the true meaning of Christmas, but every kid out there is getting Christmas presents, so I have to make sure Dayton has something good to open too.  But the major focus of Christmas is Christmas gatherings, and it seems when adults get together, we forget all about the kids.  They're in the house with us, they're safe, let's play!  At least, that's what Christmas has been like for us.

This year will be a little bit different, and I'm really looking forward to it.  Christmas will be at one of our favourite uncle's homes, right here in Winnipeg.  Uncle Eddie's a great guy with a fantastic sense of humour.  His wife Linda is super nice, and their daughter Kim...  to be honest, the ladies of the house are nice, but that's really all I know.  We haven't spent much time together.

Their Christmas presents will already have been opened, woooooohoooooo!!!  No need to worry about Dayton opening everything.  If Dayton goes a wee bit on the 'hyper' side, we get to excuse ourselves and leave.  But I have a feeling this year it will be different.

Dayton's learned a lot this past year.  He's much more vocal about his needs and wants, and more tolerant of things that would send him over the edge just a short year ago.  My Christmas tree has staid standing erect this year, the tinsel left on the tree, and the light bulbs have not been messed with or unscrewed.  This year, Dayton's WRAPPED Christmas presents and put them under the tree...  I'm missing one of my lip glosses and praying it's under the tree...  I've left a present for him under the tree (just one is all I'm brave enough to leave) and he's left it wrapped!  My babe's grown in the last couple of years, and this Christmas I celebrate this growth in the warmth of Christmas spirit.

It's OK to be thankful at Christmas time, trust me.


Consider yourselves hugged,

Lou

Why Are Men So Irresponsible?!

I'm going to vent a little here...  OK, a lot!  Who am I kidding, this is a man bashing post, but I assure you it's with good reason...

What is wrong with men today?!  With the exception of Super Dad and a couple of men I can count on one hand, what is the problem with men and their responsibility with their children?  I mean seriously?!

I've been at my new job for three whole days now, and I'm ready to fire Dayton's dad.  That's right, I said it family and friends.  I would like to fire my baby's dad.  How do I go about doing that?

Monday:  Everything was fine since I only worked four hours and was able to pick up Dayton off the bus myself when he got home from school.

Tuesday:  I have the opportunity to continue working, and Glen (Dayton's dad) has the day off.  Before I went to work I talk to him telling him how guilty I felt on Monday, leaving my pharmacy team to drown, as they were super busy.  Meanwhile, during my job interview, I bragged how I would go down with the ship like the band in Titanic.  Glen and I both agree that he will pick up Dayton from the bus at 3:10pm, and I will call to remind him at 3pm.  I call his cell phone twice, no answer.  I call him at home twice, no answer...  My new employer wants me to stay...  I run out of the pharmacy telling her I will be right back, but need to check on my baby...  I drive like a maniac home to find the two of them safe and sound, playing Call of Duty...  something completely off limits!!!  No video games period from Monday to Friday, did I not make that crystal clear?!  I drive back to work and slink into the pharmacy completely humiliated.

Wednesday:  Glen calls me at work at exactly 3:10pm.  He tells me he's missed Dayton's bus.  "Exsqueeze me?!  What the bleep bleep bleep do you mean you've missed his bus?!"
"I lost track of time."
"It's the one and only thing you HAD to do today!!!"
"Well, what do I do?"
"GO FIND HIM!!!  Go to his school and if he's not there, then they can call the bus driver!!!  If you don't find him, I'm going to strangle you with my bare hands, do you understand?!  You call me when you get to Dayton's school and you let me know what's happening, got it?!"

Ten minutes later:  "Drove to the school, they called the bus driver and Dayton's still on the bus.  He's on his way home now."
"Good, now stay put and WAIT for him to get there!"
After I get home from work:  "What if I keep Dayton for the day tomorrow, it's the last day of school tomorrow, what's he going to miss?"
"Ummmm, I don't know, his friends?  His teachers?  He's going to be home for two weeks."
"Just thought it would be easier..."
Yes...  because I always have it easy and so does Dayton...  Hmmmm, why didn't I think of that?

Of course Dayton hears this...  "Yeah, I wanna stay home!  Mamma, why you so mean?!"
Guess who won?

Thursday morning:  Looking forward going to work.  At least I know Dayton will not be forgotten on a bus or at school and CFS won't be called for being neglectful.  Getting out of the madhouse for a while will do my soul some good.  My friends don't need to post bail for first degree murder, and Glen's friends don't need to worry about what to wear for his funeral.  Everyone's fine...

Grrr...


Considering myself hugged,

Lou

Autism De'Light

Certain things worry me about Dayton, visible things...

The older he gets, the more I believe in his diagnosis; it's as though he's grown into it.

The way he fidgets because his underwear "pinches, but they're not too small or too big mamma."  The way he slouches his shoulders no matter how much I'm after him to sit up straight and "pull your shoulders back!"  The way his body is always itchy and he feels compelled to scratch like crazy at times, especially when cuddling with me on the sofa.  The way he doesn't process temperature (in the summer at 35 C's he's wearing a long sleeved shirt hoodie and jeans, in the winter at -35 C's he's wearing his winter coat unzipped).  The way he chews the skin off the end of his fingers (and it doesn't hurt him to do this), the way he stares off into space as though pausing a movie then pressing play as he continues from where he left off...  the way he writes, talks, acts around others...

If you sat down with my babe for half an hour, you'd say I was nuts.  "There's nothing wrong with him," is something I hear often...  But spend a week with him, and you'd notice these little things too.  And these little things all add up, don't they?

I woke up to the radio last week to hear a Charles Adler show in session about autism and how the 'high end of the spectrum' is being over diagnosed all the time.

Let's put this into perspective most of us can understand...

How many of us have struggled or been concerned about adding an extra few pounds?  How many of us have been ten or twenty or thirty or forty or fifty lbs over weight or more?  News flash:  The pain of being a little over weight is painful, just as being very over weight is.  Pain is pain.  As a parent, am I grateful that Dayton fits on the higher end of the autism spectrum?  Absolutely, but in some ways, I can't help but think if he fit on the lower end of the spectrum, people would make accommodations for him that they don't now, nor will they in the future.  Dayton is and will be viewed as a little 'odd.'  And that hurts.  A lot.

I've heard the term 'autism light' many times; you'd think I'd be immune to it, but it still makes me cringe when someone refers to PDD-NOS as autism light.  It's far from light.  It hasn't been light on Dayton.  It's been hard, very hard.

I am very fortunate to finally have a teacher that understands my babe and cares about him and his education.  We have faced others who really couldn't have cared less.  Even worse, I swear they even looked for an excuse to get him suspended so they wouldn't have to deal with him.  Knowing that a teacher does not care for your child is difficult, and I am so blessed to not have to deal with that this year.  I've been praying for four years to have a teacher like the one Dayton has now.  Four long years...  I thank the Lord for her every morning, EVERY MORNING.

Had Dayton been diagnosed with classic autism, I bet the previous four teachers would have made allowances for his behaviour and cognitive delays, but alas they did not.  Instead of wording their questions in a way where Dayton didn't take them 'literally,' they engaged in full out war with him and had a power struggle with a cognitively delayed child, constantly forgetting that even though Dayton may chronologically be seven, eight or nine years old, he was actually mentally comprehending of that of a five, six or seven year old little boy.  This resulted in extreme physical altercations between my child and the school staff, where one time it took four teachers to hold my then fifty pound child to the floor.

So for those parents who think my child has 'autism light,' I ask that you take a moment, bite your tongue and acknowledge the fact that my pain is just as real as yours.  My struggles are just as real as yours and my concerns, worries and panic attacks in the middle of the night are also just as real as yours.  My tears are wet too, just like yours.




As dad Paul always reminds me at the end of a phone call, consider yourselves hugged,

Lou

I Am SPEECHLESS... And That's Saying A Lot!

Wow!

Holly Molly!

Right now...  I am speechless...  this does NOT happen often, so I urge you all to enjoy it, because I promise you, it won't last long...  I promise...

My day started off as always, with the exception of Dayton refusing to go school because his beloved educational assistant Mrs. H. is no longer at the school, so we missed the school bus and I had to drive him to school.  Then I raced home and got myself ready for my first day at a new job in pharmacy (WHICH I LOVE!!!).

I walked into the pharmacy as nervous as a porcupine walking through a balloon shop.  I've been an instructor for so long, I was sure the current pharmacy technicians had super high expectations of me...  you know, thinking I was God or something...  But they didn't.  In fact, I loved it there so much that I offered to come back after supper when Dayton's dad would be home to watch him.  I LOVED IT!!!  I felt productive for the first time in years!  More productive and appreciated than I had in all my time teaching.  I have a purpose again...  I feel fulfilled!  I can hardly wait until tomorrow when I go back to work!!!  The staff is amazing!!!

After work I had this brilliant idea of going to the bank...  in the mall...  Ohhhhh nnnoooooo....  I forgot about the sadistic Christmas shoppers out there, that are just chomping at the bit to assault you and anyone else standing in their way.  As I was waiting in line at the post office, the young girl standing in front of me in line pretty much verbally accosted the poor cashier.  It was horrible.  I could hardly wait to get home...  The mall is TOXIC this time of year.

After supper...  this is why I'm speechless...  I get a call from Dayton's teacher.  This is at 7pm at night...  and I'm thinking 'oh nnnnnooooo...  I'm going to have to quit my job, here we go...'

"I was just calling to tell you that Dayton had a fantastic day with his new aid.  He did great!  I also wanted to make sure that you knew the spelling test from last Friday is rescheduled for tomorrow.  He should do very well as he practices at school every day.  Oh, and did you get the work book you brought to the IEP meeting?  Would you like me to send Dayton's 'snake habitat' home tomorrow?"

I couldn't believe what I was hearing!  I had told Dayton's teacher that I started my new job this morning, and she said that was another reason for her call, to see how I liked it!!!

I LOVE DAYTON'S NEW TEACHER!!!  I've never, ever had a teacher take the time out of HER evening, her unpaid time, time dedicated to herself and her family...  call me to say my babe had a fantastic day...  I am stunned into silence.  I'm speechless.  Someone pinch me, am I dreaming?!

Thank God for teachers like Mrs. G.  She's amazing!
She's certainly gone above and beyond my expectations...


Consider yourselves hugged,

Lou

Another One Bites The Dust

Ahhh yes, it's a tough week for Mr. Dayton.  Dayton's beloved educational assistant's last day of work was yesterday.  Today, he got to watch his grandma Karen move her belongings out of grandpa's home and leave for Colorado on her new life, and Big Mamma starts her new job on Monday.  Poor kid...

Hold up...  Did I say grandma Karen is leaving us?  Yes...  Even grandparents have marital issues.  Grandma Karen has been gone since September when her mom passed away, and today was the first time we've seen her since her terrible ordeal...  Losing a parent is never easy, no matter how old you are.

Dayton of course is confused...

Last night:  "Dayton, we're going to grandpa's tomorrow morning to help grandma move out.  I'd like to be there early, so I was thinking we'd get up at the same time we normally do to get ready for school and..."
"THERE'S NO SCHOOL TOMORROW!!!"
"I know babe, I was just saying that..."
"No, there's no school tomorrow, no, I'm not getting up early, no grandma moving out.  She has to stay."
"Babe, it's not up to us..."
"Her not have a choice, just like I don't.  No school tomorrow."
Ugh.

So off we went to grandpa's place this morning, only to be the last of the family to arrive.  Dayton's uncles and aunties were already there, and so was grandma Karen, who glanced at us and said:  "Oh good, there's more of you..."

I lost it.  I'm not proud of it, but remember how I was saying that a year ago, I would cry when someone hurt my feelings, or Dayton's feelings, and I would try to reason with the person as I am a people pleaser.  Now I've become Lou's evil twin Lola; not caring who I hurt, leaving a path of destruction behind me.  I snapped back at her:  "Well, you'd think you'd be happy to see your family again!"  She didn't speak to me again.

As I sat on the living room floor with the rest of the family, I felt completely uncomfortable.  So it seemed did grandma Karen.  She walked around the place like death warmed over.  I can't say I blame her, knowing that everyone present was there for grandpa; loyalty lines were drawn, and blood is thicker than water, right?  I felt a little bad for her.  But she did hurt my baby...

"Grandma's not gonna leave me mamma, she loves me."
"Babe, this has nothing to do with you.  This is stupid grown up stuff."
"Mamma, she loves me.  She told me she did."
"I don't think that's changed babe.  She does love you, but things have changed for her.  She has to go back home.  It's not about you, it's about her."
"Is this why Mrs. H. (his educational assistant) had to go too?  Stupid grown up stuff?"
"Pretty much babe.  Stupid grown up stuff."
"But you said you love me, and you never leave me mamma.  That's what you said."
"That's different babe.  Grandma does love you, and she is leaving, but she's not leaving you."
"How you say she not leaving me when she leaving?"
Grrrr...

So I lost my cool.  I'm not happy about it.  I'm especially not happy that my babe saw me lose my cool.  I'm not happy that our family's been turned upside down, and that Dayton's lost his grandma.

This twin sister Lola is not who I am.  I'm not this person, and I don't like her.

So, to try and put a smile on both our faces, Dayton and I had what we call 'family night.'  We played the little version of Cranium (totally love it, I've modified it to have our own version), tried to play some yahtzee, and then daddy came back to Winnipeg from The Pas...  The two of them are currently arguing over the MW3 video game.  Lovely.  I think I'm going to make it an early night tonight.

Calgon, take me away!


Consider yourselves hugged,

Lou

My Baby's Heart Aches!

It was a loooooong and rough night last night.  I've been up all night, with Dayton crying because he couldn't sleep, begging me to turn his brain off...

My poor babe is devastated that his beloved educational assistant is leaving.  Today is her last day, and I thought I could ease the ache and prepare him for the "goodbyes" by bringing him a gift to give to this wonderful lady...  While it was a nice gesture, and he was super excited to hand the gift to her, it did little to ease his pain once we got home.

At first I thought he was just trying to get out of bed time, you know, the usual stuff that goes on at bed time.  Actually, thinking about it now and replaying it over and over and over again in my mind, it's almost become a bed time routine.

"Dayton, bed time."
"Awwww..."
"I know, I know babe.  Time to turn off the TV."  (I tell him this about twenty minutes prior to his actual bed time because I know we are going to squabble for about twenty minutes before he finally gives in.)
"Just five more minutes mamma, plllllllleeeeeeeeeease!!!"
"OK babe, five minutes, and then promise you will turn off the TV."
"OK mamma..."

"Dayton, time to turn off the TV.  Time to get out of your clothes and go to bed.  Where's Jack?  (His cat he can not sleep without.  Before Jack came into our lives, I had super big hair dues to Dayton's playing with it until he fell asleep, kind of like a bird's nest, resembling Albert Einstein's hair...  So yes, our cat must earn his keep...  Don't go calling PETA now folks.  Relax.  Jack is pampered silly during the day, and I now have hair to die for).

"But mamma, I'm hungry."
"OK, let's get you a yogurt or would you like an apple and cheese?"
"Yogurt please, and tea."
Grrrr...  the tea.  I hate making tea.  "OK buddy, go brush your teeth and get ready, I'll get your snack and tea."

"OK Dayton, time for bed.  Let's get your home reading out."
"There is no home reading."
"Really?  You've forgotten it again?!"
"No, there's just no home reading."
"Babe, you haven't had home reading all week, this is strange as you always have home reading."
"Well, maybe not anymore since Mrs. H. is leaving."
"Dayton, you either start bringing home books for home reading, or I promise you, I will make you read one of my books on Pharmacology buddy...  And you remember how hard those words are and how they make no sense and how bored you got, right?"
Head hangs down:  "Yes mamma."

Off to bed he went.  Or so I had thought.

About twenty minutes later he comes to see me in the living room, tears rolling down a very, very red and scrunched up face...

"Mamma, I can't sleep!!!"
"Oh sweetie, what happened buddy?  What's the matter?"
"I don't want Mrs. H. to go."
"Baby, I'm so sorry, but your Principal assured me that your new assistant is someone you've met before, someone you liked.  I'm sure things will be fine" I say, as I'm biting hard on my lower lip...  While you may not care for my words THIS REALLY SUCKS.  And it really makes me not like men very much at all.  Not that I'm saying all men are bad...  easy now fellas, but to be honest, there are only a handful of men in my life that I think do whatever it takes for their kids.  And while I don't know our beloved assistant's ex husband, I'd really like to kick his a$$.  Because it's all his fault.  Can't go into details, but trust me, I know it's his fault.  I'm being unreasonable and very selfish, but you don't understand...

My son did NO work for two years.  My son did not participate with the rest of his peers with anything for two years.  My son was constantly suspended for two years.  I left my job because I got sick from the stress of it all, and finally pulled Dayton out of school early last year, because the staff had nothing under control, and believed Dayton to be a behavioural problem and that he had no 'discipline.'  The word autism didn't seem to fit in with their line of thinking.

Now we have this wonderful, beautiful human being come into our lives, who loves Dayton and Dayton knows she cares about him, which has prompted him to be more compliant.  He knows this woman has faith in him and that he is capable and she encourages him every single day.  Dayton trust her completely.  He loves her.  For Dayton to say that he "loves" someone, he really, truly means it, and you should take it as a huge complement if he offers you his heart, because this is very, very rare.  I have heard Dayton say that he likes people, but never once has he used the word "love" for any of his assistants, EVER.

I wish I could name this wonderful woman, so that where ever she ends up next, knows that they don't just have an "aid."  This woman is a "professional educational assistant."  She is what every parent hopes the school finds for their child, and the woman needs a raise.

"Babe, would it make it easier for you to sleep in my bed tonight?
"Yes mamma, I need your hugs."
"I need your's too babe, I need them lots, OK?"
I finally got Dayton to sleep at around 11pm, his "normal" bed time routine starts at 7:30pm.  He kept waking up all through the night, crying and begging me to turn his brain off.

"Please mamma, shut my feeling button off.  I don't want to feel so bad."

I want to turn my feeling button off too.  I really, really do :(

I'm having a bad hair day today, bird's nest back and the vultures were circling me again this morning...

Who ever gets this blessed woman, I want you to know that she is absolutely amazing.  And if I can figure out a way to get her back (like breaking her ex husband's legs or something), I will do it.

If my son LOVES her, she'll be worth the jail time... LOL


Consider yourselves hugged, while I crawl back into bed.  Two hours of sleep just does not cut it with me.  I need my beauty sleep folks.


Consider yourself hugged, as Dad Paul says to me every time I speak with him.  And I do feel his hug.  I hope you feel mine.


Lou

Autism Night Before Christmas

Wow, wish I had the wit this woman obviously does.  I just had to share with all of you.  Hope you enjoy as much as I did.

Autism Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color and style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned…….

Consider yourselves hugged y'all!

Lou

Sad, Sad and Sad

I had the opportunity to volunteer at Dayton's school today for hot lunch day again, and was again greeted by my little man, arms wide open, big grin on his face.  This time he was accompanied by his educational assistant.  She looked so sad...  and the three of us had a big group hug and spilled a couple of tears together.

As I've mentioned on Friday's post, the best educational assistant that's graced Dayton's school is leaving us...  I'm scared, and in desperate need of a hug.  My boy is very sad.  So the two of us are just hanging out tonight, cuddling and watching a movie to get our minds off the sadness.

The plus side is I got a new job today.  I'm super excited about it, as my new associate seems like an easy going pharmacist to work with.  She's down to earth, no 'mightier than though' attitude, which makes me happy.  I don't want just another job, I want a great place to do what I do best, sell drugs legally.

I've missed pharmacy, the patients and my personal favourite:  blood glucose monitors.  While teaching wasn't horrible, I do miss the patient interaction and knowing that when I come home, I'm all Dayton's.  I thought teaching would have given me more time with Dayton, but it turned out it gave me less time, having to prepare endless lesson plans and curriculum, tests, answer keys, reviews, assignments.  I'm looking forward to being able to leave my work at the pharmacy and have quality time at home with my son, and still earn an income.

So I'm kind of having a bittersweet day today.  Sad over the loss of our "Super EA," but thrilled to be back to being a "Super Tech."  It's what I do best.  That and being a nuisance.  I'm awesome at that too.


Consider yourselves hugged, because that's what I'm doing tonight.  I'm holding my babe, taking turns wiping eachother's tears away.


Lou

Reading Recovery Program For 1st Graders Only?!

I've just been chomping down on my tongue, and just can't take it anymore...  I need to ask you guys what you think of this...

School's come a long way since I was in grade one...  Mind you, I only spoke Slovenian, and when I went to grade one, didn't know a word of English.  My parents didn't speak much English, and were planning on moving us back to Slovenija, so they weren't really concerned about my not being able to speak English.  My teachers on the other hand were very concerned, and ended up failing me my first year of school.  Of course, back then, there was no such thing as 'no child left behind,' and the importance of 'social promotion' verses 'education.'

Anyways...  During my visit to Dayton's school for his IEP meeting, I had an opportunity to learn from the guidance counsellor about the reading recovery program in our school division.  Did you know that it costs $3000.00 for a child to be in the reading recovery program?  I had no idea...  Not only that, but not all school divisions offer the reading recovery program, and for those that do, it is only offered in grade one.

I am really concerned about this Mr. Premier.  As if you actually care what I think, but as a parent of a member of our future generation, I am very, very concerned about this.  You see, my son is in grade four, and he is desperately struggling to read and write.  My boy's reading is at about half way through grade one, and I'm afraid to even guess where his writing level is at, but I'm going to guess it's no where near grade one level. My son is not able to write even a small sentence.  I think that you should be worried too.  I know my child is not the only one falling through the cracks here...

 The "Honourable" Premier Greg Selinger...  

To add insult to injury, I know that my son's teacher, education assistant, guidance counsellor and resource teacher would love to help my son, but can only do so within the parameters given to them.

Of course, Mr. Premier is not at the elementary schools to answer to concerned parents is he?  No...  So who does the parent take their frustrations out on?  Who does the parent blame for their child not getting an education?  Why their school of course!  Makes sense, right?  I mean, it's the school's responsibility to teach our children, right?

I freaking hate politics.  Hate them with a passion.  They have no business in our schools!

I need to do MORE research, again...  Grrrr...

What are your thoughts?


Consider yourselves hugged,

Lou

Heavy, Broken Heart

Ohhhhhhh nnnnnnoooooooo!!!  Dayton's educational assistant is leaving!!!  Nnnnnnoooooooo!!!  Next to breaking a hip, this is not the news I wanted to hear right now...  It really isn't...  I'm serious.  I'd rather lie on a bed of nails, stick one of them in my eye, run to emergency and wait there for three days before it's my turn for the good doctor to see me and get a tetanus shot than have his educational assistant leave!!!  I don't know which one of us is going to take this worse, Dayton or me, myself and Lou...

The principal assured me that it is not just Dayton's educational assistant that is making Dayton successful this year, that it is also Dayton himself.  I told him he's wrong (of course I did, mamma knows best, right?), it is a combination of Dayton's new teacher and his educational assistant.  This does not mean that I don't believe in my babe...  It means that I've gone through enough hell in Dayton's short career as a student to know better.

My son, whom I love more than life itself, has chewed up, spat out, used, abused and eaten for lunch educational assistants that were much, much bigger and meaner than his current assistant.  I remember one year at St. Amant's daycare I was supposed to have been thrilled to have a spot found for my son, Dayton went through three assistants in a month, one of them only lasted a day.

This petite little woman has a grasp on how Dayton works and what makes him tick more so that I do myself.  I want to bring her home with me, but that would just weird her out, I'm sure it would...  I don't want her to go...  She cares about my boy, the way I haven't seen an assistant care about him before.  It's a sin to lose her...

How am I going to tell my babe that she's leaving?  I can't break his heart too...

I think I'm just going to have to settle down with a glass of wine to chill my nerves...  Take deep breaths, try not to hyperventilate and maybe call my friend to come over so I can whoop her butt in Yahtzee...  That always makes me feel better...


Consider yourselves hugged,

Lou

I Like To Move It Move It, You Like To MOVE IT!

Homework time.  The time where I've heard some mothers say they love because it gives them time to themselves, or time to do some laundry, or time to do the dishes, or time to have a pedicure...  Not in this house!

We've sat down to read a challenging book for Dayton; just the right amount of challenge, not too easy, and not so difficult where he starts head butting me (and yes, I'm talking literally).  The book is titled 'Wild, Wild Hair,' and it's about a little girl who's got some major knots in her hair...  the kind that would make me want to shave her head if she was my daughter, poor girl.

Anyways...  we get to the part where the author says that "her mother's fingers flew," (brushing and braiding the girls hair into twenty braids) when Dayton looked at me all confused...

"How did her fingers fly?  Did they go on a plane?"
"Ummmm, no babe..."
"But why they say her fingers fly?"
"It's just an expression babe.  It means that her fingers worked fast."
"Worked?"
"You know, brushed the girl's hair and braided it.  Her mamma worked very fast."
"Why not say fast then?"
"To make it more interesting.  It's a figure of speech."
"I didn't find it interesting at all."
"Lets finish reading, maybe it will get interesting soon."

Don't get me started on the part where the little girl is ready to "crawl out of her skin."  We just can't get away from euphemisms.  They're so common!  Oh well.  Please, don't get me wrong, I'm not complaining about the choice of book sent home for home reading.  I LOVE IT!  While yes, Dayton struggles with euphemisms, the book gave me the opportunity to at least discuss them with Dayton, explaining what they mean.  I even asked for the book to be sent home again because I wanted to see if Dayton would remember my explanations.  Awesome practice for us.

We finish the book, and Dayton needs a break.  This normally means a few very, very hard high fives for doing a good job.  My hands throb after about eight of them, and I'm begging him to stop.  Then we stand up and do a little victory dance.  I'm not going to begin to describe it, it's just too embarrassing.  The things us moms do to make homework interesting.

I used to read the book to Dayton first, then give it to him to read back to me.  I thought I'd shake things up a bit by reading the book to him first, then taking turns reading from the book:  I read one page, Dayton the next then me again...  you get it, right?  Bad move...

Routine, routine, routine!  Rule number one that I thought we could just get around, but apparently not.  Oooops.  Oh well, worth a shot.  I should have asked him first, lesson learned by mamma.  Won't happen again.

After the super hard high fives and victory dance, we sit down again to do spelling.  This week we're trying something new, I'm praying he's cool with it.  We're giving Dayton a sentence to to study along with his spelling test.  Just a short one.  This little change he didn't seem to mind...  whew!  After an hour of this, we did more hard high fives...  ouch for the mamma, giggles for the babe.  Yes, I love him, and there's little punishment I don't put myself through just for him.  Because I can be having the worst day of my life, and Dayton will give me a big hug and kiss and suddenly everything's all right with the world once again.

I've tried and failed at many things in life but I will NEVER stop giving 100% at being the best mom I can be.



Consider yourselves hugged,

Lou

10 Reasons Not To Pi$$ Off An Autism Mamma Or Dedicated Daddy

I'm really tired of unsolicited advice from strangers, friends and family who think they could do better raising my child, aren't you?  Why can't they just mind their own beeswax and run along?  Sometimes their hearts are in the right place, but most of the time it's just showing off what they "know" about parenting, and trying to feel good about themselves while belittling us as parents.  My personal favourite is the time where my babe was having a stimming meltdown in the middle of the mall, and a man in his 40's walked up to me and asked me if I could "control my child."
"My 'child' has autism, what's your excuse?"

10.)  We are trained in verbal warfare.  We received our training first from the family members we no longer speak to (no need to get into whether or not they're still with us, you just need to know we've won), passed friends (no, this is not a spelling mistake, take it any way you like) then our children's daycares, then their schools.  After all that, our kids come home from school and teach us a few more words your neurotypical kids taught them...

9.)  We're on the alert for any moving target.  We're constantly evaluating and re-evaluating our surroundings, watching for you!  We're ready for you and your assaults, and we've heard them all before.  You don't honestly think you're going to be the first one to tell us there's something wrong with our kids do you?  No shit Sherlock!  Believe it or not, I thinks so too!  So does his school, his paediatrician, his speech pathologist, his child psychologist and family doctor!  Mind yer own beeswax laddy!  Get yer panties out of their bunch and move along!  'Cuz if you don't, I may 'ave to lay da smack down on your rootie poo candie a$$.

8.)  We are exhausted.  I totally take back all those times I didn't want to nap as a child!  We've endured countless sleepless nights due to stress, depression and a kid who just won't go to sleep no matter how many Melatonin you give him.  How is this your problem?  Well, statistics show that lack of sleep can cause seizures, hallucinations, psychosis, etc... and if this is the case, no court of law will imprison us for whacking you aside the head for your stupidity.  Automatic temporary insanity.  Booyah!

7.)  We are fast.  I'm not kidding.  As I sat on my patio in the summer, I saw this kid running around outside with no clothes on and thought to myself "who's kid is that?"  Then it dawned on me...  THAT'S MY KID!  I learnt that day that I can run across our back yard, tackle the little monkey in five seconds flat, and dress the squirmy commando kiddo in two.  If I can tackle my super fast boy, trust me, I can get you too.

6.)   We are tenacious.  Popeye described YOU best:  "I've had all I can stands, I can't stands no more."  WE, on the other hand, don't have a choice.  We keep going and going and going and going like the Energizer Bunny.  Giving up is NOT an option.  So you see, we can out run you, out talk you, and beat you, to the very end.

5.)  Sarcasm and wit are our personal defence systems (well, definitely mine anyway) against drama, ignorance, whining and stupidity and we're (again, at least I'm ) not sorry for it.  "I've had all I can stands, I can't stands no more" applies to US in this circumstance.  You will most likely be told off in a way no man's been told off before...  You will learn new phrases you wish you hadn't.  Trust me, it's not gonna be pretty.

4.)  We're not like "normal" people.  Whatever that is...  We used to be.  I used to cry when people, including Dayton's school staff hurt my feelings or made me feel like a bad parent.  Not anymore.  Now I just get mad and don't care who I offend.  I remember when I wore nice clothes, you know, dress pants, dress shirt, leather this and that, pretty frilly things, jewellery, make up, nails...  I used to go out with my friends and barely stayed home.  Now I live in my yoga pants and tee shirts, no joke.  I wear yoga pants ALL THE TIME.  I don't think I even own a pair of jeans anymore...  Oh, wait... yes I do...  the dryer shrunk them...  And my friends?  Yeah, I left those behind as well as family members who had a "problem" with my son.  If you come over unannounced, there will be toys from one end of the house to the other, dishes in the sink, sticky table and counters, and laundry to be done.  Seems some people have a problem with that.  I used to be like that too, so I forgive you.  But if I have to chose between you and my son, or house work and my son, my son wins hands down.  So does his floor time play, which we do from 4pm to 6pm, have supper do homework and go to bed.  So you see, my time is limited.

3.)  We are strong.  I bet you've never seen a small guy have a fit of rage and know he could take you.  My lil'man was three years old, just had his adenoids removed and tubes placed in his ears.  I was told to enjoy my "quiet weekend."  When we got home, he got a little crazy, so I told him to go to his room.  Within three minutes, he tore his bedroom closet doors down...  big, huge heavy doors that took me half an hour to drag from his room to the basement laundry room.  But I did it, all by myself.  On the second thought, maybe I should let him take you on!

2.)  In case you haven't figured it out by this point of my post, we're already mad!  I mean mad cow mad.  Super rage about to burst from the seams kind of mad.  We're mad at God (yes, I know, how dare I?  What kind of a Christian am I?  Ummmm.... an honest one?!) for ripping us off, for not giving us a choice in what and how much we can handle.  We're mad at Him for giving our child autism.  We're mad at the doctors that didn't diagnose our kids early enough so we could get the help that they desperately need, because here in Winnipeg, there's so much bloody red tape to get through, I don't think even our beloved Premier Greg Selinger knows how to get through it, he certainly doesn't seem to know how to answer his phone.  I wonder if he can tie his own shoes?  We're mad at the educational system failing our kids, letting them fall through the cracks...  Do you really want to be the one who makes me go postal?  "Do you feel lucky punk?"

1.)  Let's just say that I (I mean we) are amazing and just leave it that.

Consider yourselves hugged,

Lou

T'is The Season Baby!

Ahhh Christmas, my favourite holiday of the year.  I love the atmosphere, the Christmas spirit, where even people who don't believe in Christ have to admit there's a certain kind of magic in the air.  I love it!

"Mamma, I want Christmas spirit."
"Well babe, Christmas spirit is in your heart."
"No mamma, I want it in my room."
"Ok...  you want to decorate your room for Christmas?"
"Yeah!"
"Ok..."

So one day as I was grocery shopping, I came across this cute little baby fir tree with a snowman wearing red ear muffs and a red and green scarf.  I thought it would look great in Dayton's room, on his dresser, or on his night table.  And it did, for about a day or so.  Then he brought it out to the living room instead.

"I thought you wanted Christmas spirit in your room babe?"
"I do, but not like this."
"You don't like the decoration?"
"I do, but I don't want this decoration."
"Well what kind do you want?"
"I want baby Jesus."

And here I thought Christmas was just about the presents!

My jaw dropped.  I've been doing my best to teach Dayton about our heavenly father, reading a great book called the Lamb that my dad Paul Humphreys had a hand in creating.  It's a fantastic book (which comes with an audio CD if you feel too lazy to read), which teaches young ones (about ages 8-12) about the message of the bible.  After each chapter, there are a list of questions for the young one to answer.  Let me know if you want a copy so I can direct you to the organization or go ahead and look it up for yourself at http://www.goodseed.com/products/lamb-eng-book/.  Reading it to Dayton, I find it ministers to me as well...  things that I've forgotten, I'm gently reminded about again.  Anyways....

My baby's a believer.  I know this now in my heart.  Whenever I ask him if he believes in God and that Jesus died for our sins, he always answers with a yes, but kids are funny that way, answering the way they are expected to answer sometimes.  Especially kids with autism.  Dayton knows how important my faith is to me, and doesn't want to disappoint me.  But now I know for sure.  There was no coaxing on my part, this was all his idea.

So this weekend we got out our Christmas decorations along with the tree.  What a pain!  We have one of those pre-lit Christmas trees, and for the life of me, I could not figure out how to get all the lights working.  Finally I just gave up.  The lights work on top and bottom, but not in the middle.  Think anyone will notice?

I've allowed Dayton to decorate the tree by himself, to make it all his own.  I helped out here and there, but for the most part, the tree is a representation of his artistic vision.  And what a vision!  It may be an eye sore to others, but to me, it's the most beautifully decorated Christmas tree ever!


Consider yourselves hugged, and I hope you all find your Christmas spirit!

Lou

Best Triage School Conference EVER!!!

I can't stop grinning.  My face actually hurts from all the smiling this week.  I'm so happy!  I think I just may be able to go out and look for a job now, that's how 'in control' Dayton's new teacher and educational assistant are!

Teacher, student and parent meetings out here are called Triage Conferences.  We have two a year, and the last four I went to, Dayton kicked, screamed and bawled his little eyes out "NO MAMMA, DON'T MAKE ME GO BACK TO HELL!!!"  And I'm thinking "hell?"  What the hell?  No pun intended.  I just chalked it up, and still do to the fact that he had already been in school for the day, and just didn't want to go back to school again. Plus, he didn't really care for his teachers in the past.  I couldn't blame him.  I didn't want to go there either.  I'd always come home completely deflated, feeling like the worst parent EVER.  But this time was different.

I thought for sure I'd have to fight him to go since there was no school on this day, but he got ready and dressed before I did and couldn't wait to go to school!  What the hell???  Dayton was dragging me out the door this time, with me kicking and screaming:  "Nnnnnnnnoooooooooooo..."

He was practically bouncing in his seat on our car ride to the school, with a big huge grin on his face.  "Mamma, I can't wait to show you my snake pit!  You gonna freak out!"  He knows I'm terrified of spiders and snakes...  Of course he'd chose to make a snake habitat (pit), just to watch me squirm...  But still, I'm thinking "what the hell?"

We pull up to the school, and just before I managed to put my gear shift into park, the boy unbuckled his seat and opened his door.  "Slow down Dayton!  You always wait for mamma!!!"  I get around to his side of the car and his hopping in one place, with his knees close together.  "You gotta go pee buddy?"
"No mamma, hurry up!!!"  Ok....  And he's dragging me to the school.  Should have brought the sled for him to pull me...  Next time...

I'm walking towards his classroom and he stops me and drags me to the office...  Ohhhhhhhh nooooooooo... We stop in front of a glass cabinet.  "Look mamma, which do you think is mine?"  There's all kinds of beautiful animal habitats in the cabinet.  I'm looking for snakes though, because he's already told me...
"Aha!  That one!"
"Nope."  It appears my son is not the only one trying to give his mom a heart attack...
"Hmmmm...  this one?"  There was only one left.  Has to be it...
"Yup!  Whadaya think mamma?  Do ya like it?"
"Oh, absolutely, well done Dayton!"  And he did do a really great job on his project.  "It looks like you took a lot of time and gave your project a lot of thought buddy.  Well done!"

Dayton leads me to his classroom where his teacher is speaking with another parent, so we just sit at his desk and go through his 'profile.'

I was speechless.  There was so much work to show me!  Unbelievable.  I kid you not, I started to cry...  My baby has never produced so much work for any teacher or educational assistant before.  I felt like an idiot for crying, but I couldn't stop!  There was math and spelling and art pictures...  I was so impressed with Dayton's art work, I asked his teacher if we could take it home...  What a fantastic Christmas present for big mamma!!!

We left the empty classroom and went home, both of us smiling, neither one of us wanting to leave.  It was fantastic.  The only reason I didn't stay to say good bye to Dayton's teacher was that I had other places to go...  So, she called me!  Ummmhmmm!  Yup, she called me to apologise for not being around to say goodbye, and to thank ME for Dayton's successful year.  "Are you kidding me?"  I say to her...  "It's due to your work and the educational assistants work and your joint belief in my son that he's having a good year!  I've done nothing different from last year."

This is the same child who's past teachers had claimed that Dayton wouldn't work, couldn't work, and has no desire in his school work.  This is the same child who just last year couldn't write.  The same child who couldn't read.  The same child who's last year teacher had told me she'd have to write a 'novella' every day in order to communicate all of his bad behaviour...

So...  for all of you out there who figured that Dayton is not capable and never would be...  how would one go about spelling the sound of sticking my tongue out and blowing?  You know, like a kindergartner would go after saying:  nener, nener, boo, boo?  That's what I wanna give em...  For them folks not believing in my boy:  "IN YOUR FACE!"  Ma'baybey's rockin' it this year!  We may be a wee bit on the red neck end of thang's and a little wee bit a late bloomin' goin' on here, but we no dummies!  Ma'boy's a rock star!  His new teacher thinks so, and you can bet I do!  I love his teacher...

I wish I could find the school psychologist from school division one who told me my babe was, and I quote "retarded," and that he would never read and write and would never graduate from high school or hold down a job.  What I'd give to be able to rub Dayton's success in his face...

Neeeeener nener...


Consider yourselves hugged,

Lou

Our IEP (Individual Education Plan) Meeting

It's nice to be able to write this with a smile on my face.  How proud am I?!  Super proud of my boy and his accomplishments this year.  Super proud of all his hard work.  Super grateful to his educational assistant and teacher.

The resource teacher was surprised I had decided to go alone to this IEP meeting.  I've always gone in with an enormous team to back me up, mostly for the school's benefit then my own, so that when parenting questions arose, I could have a CFS worker there telling them that my parenting was just fine, and that they needed to focus on Dayton's schooling instead of my parenting.  Remember in my last post I mentioned that until recently I didn't like hurting people's feelings or being rude or standing up for myself?  Yeah, since that's changed, I'm good to go to school by myself...

It seems the staff received the message from my team last year, as this year's IEP meeting was more than pleasant.  We were all smiling, all proud of Dayton and all talking about Dayton rather than what's happening at home.  What a refreshing change!

I loved sitting beside Dayton's new teacher, a woman I've only met once before.  This woman is an angel in my eyes.  She clearly gets my babe!  I'm just amazed at how this is possible, when he's never had a teacher 'get him' before.  She spoke clearly, and was very knowledgeable of Dayton's strengths and weaknesses and had clear cut ideas on how to reach his IEP goals.  She kept talking about Dayton as though she's spent time with him, something that's never happened before with any other teacher!  Holly cow, this woman spends time with my baby!!!  I couldn't stop staring at her, like she was a new, sparkly, shiny toy...  and I'm sure by the end of the meeting, she must have thought Dayton clearly got his autism from his 'weirdo mother.'  I've never had a teacher speak about Dayton in this way before.  I mean, she 'gets him!'  I'm still a little stunned!

Pretty sure this was the look on my face, it was something like this still when I got home

Sitting across from Dayton's Educational Assistant was fantastic.  Even though I've already told her that I think she's awesome, I still wanted to thank her in front of the principal that she is fantastic and that I'm grateful for all the work she's done with Dayton.

I'm a firm believer that without the right people in place, our kids will learn NOTHING.  I'm certain these two women have had a huge impact on Dayton's education this year, and he's made huge gains this year thanks to the work of these fantastic women.

The guidance counsellor, a woman who's doubted my parenting (my opinion) in the past, was pleasant, respectful and helpful!  She even made time for me after our IEP meeting to show me how she teaches 1st graders reading recovery and spelling.  This was very much appreciated as I'm struggling how to explain to Dayton why there's an 'e' at the end of words that is not pronounced, like 'lake, snake, make,' etc.

I think the thing that struck me the most about our separate meeting was that we were actually able to communicate.  We've never been able to do that civilly in the past.  It always ended up with one of us blowing up or me getting emotional and feeling wounded because of her judgemental comments.  I'm not sure what's happened, if I've changed or if she's changed, but I like it.  I like to be able to talk to her as she is involved in my babe's education, and we need to be able to work together.  I think we finally can.

I've been so jilted by the education system until this year, I'm afraid to let my guard down and simply trust.  Once trust is gone, it is so hard to get back.  Do I dare let my guard down?  Should I inch it down just a smidgen?

Baby steps.  How do you take those again?


Consider yourselves hugged,

Lou

Are We Upside Down Or Right Side Up?

Most of us go on with our lives never really thinking about our world and how it all comes together.  We don't focus our world of illusions.  We are so accustomed to talking about the sunset and the sunrise.  No romance novel talks about the globe spinning on an axel or the world turning and therefore we have day and night.  It's just not romantic literature, is it?  He looked in her eyes as the world turned a little more and the sun was gone, replaced by dusk...  Yeah no...  I think I'll stick with sun sets, thanks.

How does this work with a little guy on the autism spectrum who thinks visually?  Who thinks in pictures?  Has Dayton seen a globe?  Yes, he has.  He knows the earth is round, but has a question...  "Mamma, are we at the bottom of the globe?  Won't we fall off?  Are we standing upside down?  How does it spin?  Does it go left to right or right to left or upside down?"
"Baby, ask your teacher."


Feel free to answer Dayton's questions, and consider yourselves hugged!

Lou

Positive Things Can Happen Once You Accept Your Child's Diagnos-is/es

Yeah, I said positive things.  Don't roll your eyes, it can happen.  It's happened to me.  It's still a work in progress for me too.  Every day things that don't kill me, make me stronger.  You know as much as I do there are people out there that thrive on bringing others down, especially vulnerable people who have much to protect.

A wonderful autism mom had posted this question to the Autism Winnipeg Facebook Wall:

"What do you think is the best thing that has happened to you because your child was diagnosed with autism?"

Excuse me?!

Good question!  When I first read the question, I could have spat in the woman's face for asking it in the first place.  What the hell do you mean?!  All these appointments that I keep having to have in order to take care of my child's autism, the failure of being to teach him when I can teach adults from a foreign country 800 chemicals in their generic and brand names...  holly crap, yeah, I feel like I've failed my son...  Lets not forget the judging people all around me, telling me if I only disciplined Dayton better...  The teachers who have man handled my baby because my baby was not "complying."  My anger was getting seriously out of control, trying to remember where I stored the baseball bat from our summer play...  but then...  I thought about her question, and how my personality has changed since Dayton's diagnoses, for the better (yes, I know, how ironic since I was just looking for my baseball bat, right?!  Don't judge people, I'm sure you've all been there yourself).

I sat myself down after having a traumatic evening with Dayton being sick.  He came home from school, sat at the dining room table to eat his supper and wham!  Started puking like there was no tomorrow.  Now, I know I'm no master chef, but seriously kid, I do the best I can!  You've survived for ten years with my burned toast and charcoal soup cooking, you should have an iron stomach by now...

Sitting back with a nice glass of shiraz (teachers, educational assistants, school division, better than thou people - back away from the phone and DO NOT call CFS; they said I'm within my rights to live a normal life.) to settle the nerves AFTER Dayton was in bed asleep, I thought about this autism mom's question again...

Hmmmm....  Life before PDD-NOS (high functioning autism), ADHD, ODD, OCD, global developmental delays...  You know that Nytol commercial where the husband gives his wife the Nytol and tells her "it's like life before we had kids..."  and you see the woman waking up in the morning in a beautiful white bed with red rose petals and gorgeous hair?  Hmmmmm...  Life was really never quite that good, but man was it good!

Hair before Dayton...

Hair after...

Would you believe me if I told you that I used to be incredibly, painfully shy?  Well, I was.  I got fired from my first job as a waitress for it.  I had a really hard time speaking with men and pouring their coffee, the last coffee I poured was in some poor man's lap, but that's a whole other story.

Dayton's diagnoses cured me of that shyness...  Now I'm a loud mouthed red neck (with perfect teeth and good grammar, those things are really important to me).  A total change over my dear friends.  I say it like it is and be done with it.  No beating around the bush.  I either like you or I don't.  If I love you, I love you passionately.  I don't play games.  I tell you what I think, I yell at you if I think you've deserved it, and I cry when you hurt my feelings, sometimes right in front of you.  I am real, honest, sincere and have no edit filter.  I am what I am said Sam I am.  In order to advocate for Dayton and his rights, I've had to let go of that quiet, shy girl and become the suave red neck I am today.

I used to be afraid of pain.  Any kind of pain.  Emotional, physical...  I have a mutant gene that causes breast and ovarian cancer.  I didn't want to go through the pain of surgery and the embarrassment of a mastectomy; of not having nipples and be a road map of scar tissue and not be attractive to a man ever again.

Dayton's diagnoses changed all that.  I don't care if you don't like what you see, turn the other cheek.  My son taught me to survive, and live my life to the fullest.   Dayton's courage to deal with his own challenges gave me the courage and drive to be a survivor myself.  Besides, I wanna live to see my baby's babies.  Now I'm not afraid of pain, or piercings...  a whole other story.

Until last summer, I used to be a nice and sweet, never hurt your feelings kind of girl.  I'd give you the shirt off my back, even if it meant I would be exposed for all to see in my glorious embarrassment.  I always had put myself on the back burner and put everyone ahead of me.  I never wanted to disappoint anyone around me, even if it meant that to make others happy, I would be miserable.

Hmmmm....  Dayton's diagnoses did change some of this, but I'm still working on some of it...  I still care very much about peoples needs, but I've come to a limit of self preservation, which is a very important thing to do. Sometimes we can help others too much.  I need to remind myself of that.  Sometimes people take advantage of my good nature, which naturally ticks me right off.  I'm kind of going through that right now with my supposed best friend.  Um hum...  Not going there tonight.

I used to pity people with a handicap or disability.  Dayton's diagnoses changed that too.  I now have a respect and admiration for people with a disability.  They are my heroes...  How many times has a stranger said:  "I'm so sorry" when I tell them of Dayton's autism...  or well meaning friends "I don't know how you do it Lou..."  Well, how do you think Dayton does it?  How do you think the handicapped man across the street does it?  That's what's truly amazing, isn't it?  

Finally, I used to look at Dayton as a child.  Now I see him in a new light...  He's my teacher.  Dayton sees things in a whole different way, he thinks outside the proverbial box our employers continually beg us to.  He is  AMAZING...

So, I'm dying to hear...  I WANT TO KNOW, SO TELL ME:  What do you think is the best thing that has happened to you because your child was diagnosed with autism?




Consider yourselves hugged,

Lou

My New Dishwasher

He's such a little darling, my little Dayton, and he's turning ten soon.  Sitting at the kitchen table with his Grandpa Hans, I'm drooling all over myself as I'm really, really sick now...

"Dayton, why don't you empty the dishwasher out for mom?"
"Ok grandpa."

Oh my God.  He's gonna break every dish in the house, but I have no strength or energy to stop it from happening.  Dayton may be turning ten in February, but he's inherited my swag, you know where you can trip over a cordless phone?  Oh well.  Thank goodness for my mother's china in the china cabinet.  No worries...  Just praying with my chin covered in drool that he doesn't break my favorite mug.  The one I start my morning with, not sure what I'd do without it.  You know...  routine, routine, routine...  My own OCD showing now...

Wouldn't you know it, my babe doesn't just unload the dishwasher without breaking my coffee mug, he manages to do it without breaking any dishes.  I think his OCD must have kicked in, because he did it so well, that everything is in exactly its correct place.  Hoooooray!!!  Woot-Woot!!!

Yes, my dear boy.  You're getting an 'empty the dishwasher' magnet to earn your magnets...  Mamma's gonna give you more chores to do, oh yessss....  Mamma loves you baby!


Consider yourselves hugged,

Lou

Allergic To Physical Education???

Hmmmm...  Not sure what to think here...  All I know is my little guy's got a huge red spot under his eye that looks like someone punched him in the face, which is NOT what happened, so let's just settle down all you autism mamma warriors.  No one hit my boy, he's fine...  kind of...  He's rubbed the skin off from under his eye, and it's super, angry red...

When I got to the school and snuck around to spy on my boy, to see what it is that happens for him during gym class, he was huddled with his educational assistant who was obviously tenderly caring for him.  As much as it tore at my heart strings, seeing that someone who actually cared about him was there for him held me in place to continue spying, only he stayed with his educational assistant and did not look ready to participate at gym.  Cuddling for this long is not the norm for Dayton and to be honest, I got a little jealous!  Who does this broad think she is?  Kidding.  I'm super grateful for her tender loving care for my baby.  I'm very fortunate to have her work with Dayton and pray to God that Dayton gets to keep her next year, his last year at elementary school.  Anyhow...

When I got to my babe, he looked up at me all sad like, and crawled closer to me.  Mwahahaha, babe loves mamma the best.  But my poor babe!  He looked so sad.  He told me how he got all ready for gym class, and then his eyes started to hurt 'real bad.'  Poor little guy...  I asked if he would get back to class if I raced home to get him some Advil, and he promised he would.  Thank goodness I live a two minute drive from the school!  I raced home, grabbed the Advil, and thought I'd best take some Benadryl too...  His face kind of reminded me of what it looked like when he had his rash in Campbell River, and I wanted to make him feel more comfortable.

Racing back to the school, I walked in on my babe participating with the rest of the class in gym.  Walking by, I quickly gave him the medicine I brought from home and continued to the end of the gym to sit beside his educational assistant.

I can see why he likes her.  She's a petite 'lil lady, with beautiful facial features and gorgeous hair.  She's very down to earth and talked about Dayton in a kind way.  She told me how Dayton doesn't like to do work, but she's explained to him how she doesn't like to do dishes, but she still has to do them...  He told her 'that's dumb...,' but she didn't get mad.  She just insisted he do his work, and he has.

Do they have confrontations?  Sure they do!  But here's the interesting part, the difference I was looking for this year...  Dayton LOVES her!  More important, he respects her.  He cares about what she thinks.  He is crushed if he disappoints her.  She told me of one time how he looked at her after an incident and said to her "I guess you're mad at me now," and he looked terribly sad about it.

Am I jealous?  Absolutely!  The little punk doesn't care if he disappoints me!  Why that little...  Yes, I'm jealous.  Not only is she perfect, but she's stolen my boy's heart...  and I couldn't be happier.  What comfort it gives a mamma to know her baby is loved!

But then I talked to the office administrator...  It seems Dayton has been flirting with her, winking at her and giving her that flirtatious smile...  Looks like I'm gonna have ma'hands full...



Consider yourselves hugged,

Lou

Autism Vs. Being A Little Puke

Perhaps 'puke' ain't the politically correct word I'm searching for, but I'm the kind of person who says it like it is.  My babe, my angel, my little man, the air I breathe, can be a little puke too.  The apple don't fall far from the tree, he is after all his father's son...  Dayton gets the good stuff from my side of the family, with the exception of his stubbornness...  I'll take full responsibility in that department.  I'm as stubborn as they get.  Oh, and the no co-ordination bit...  that I'm afraid is mine too.  There is no grace in my movements or the way I speak.  I'm red necked through and through.  It is what it is.  So is my babe.

Things have been going fantastic this year, with no phone calls home to come and get my babe early from school, no out of school suspensions, I don't think his royal highness even got an in school suspension this year.  If he has, I haven't been aware of it.  I've even called the school twice asking if Dayton even attends school, as I make sure he gets on the school bus in the morning, and I pick him up from the bus in the afternoon, but have not heard anything from the school, leading me to believe my babe may have figured out how to skip class, but nope.  The principal has assured me on both phone calls that my babe is there at school, every day.  While there have been a few incidents, they incidents have not been drastic enough to warrant a call home to me...  Wow!

The past few weeks Dayton has been complaining about gym class.  "Ugh mamma, she won't let me do gym 'cuz it takes me too long to get changed."
"Watch your grammar babe, it's 'because.'"
"Mamma, she won't let me do gym B.E.C.A.U.S.E. it takes me to long to get changed."
"Really?  Have you spoken to your teacher about this Dayton?"
"Yeah, she just gets mad and says I take too long to get ready."
"Have you asked her for help?"
"No."
"Maybe try asking her for help and see what happens."

Week two:
"Don't bother packing my gym clothes mamma, I'm not allowed to go to gym."
"Excuuuuuusssssssse me?"
"Don't bother packing my gym clothes mamma, I'm not allowed to go to gym."
"I heard you babe, but WHY are you not aloud to go to gym?"
"I take too long and can't tie my shoes in time to do the warm up.  Can't take gym if I don't do the warm up."
"Excuuuuuusssssssse me?"
"Ugh...  I take to long and can't tie my shoes in time to do the warm up..."
"I got it Dayton, thank you.  Have you asked your teacher to help you tie your shoes?"
"No."
"Have you asked your EA to help you tie your shoes?"
"No."
"Babe, what is stopping you from asking for help?"
"It doesn't matter.  I'm not allowed to change in the boy's change room anymore.  Don't pack my gym clothes."
"Excccccccuuuuuuuuuuusssssse me?"
"Ugh...  It doesn't matter.  I'm not allowed to change in the boy's change..."
"Got it Dayton.  Thank you.  Now what do you think mamma should do babe?  Should I call your gym teacher?"
"Yes mamma."
"O.K."
"Don't forget to ask her about deodorant too."
I really don't like the idea of Dayton using deodorant yet, as his skin is so sensitive....  but yes, I should ask her if he needs it, as we've been fighting about it for weeks.  Dayton's snuck into his dad's toiletry bag and used his deodorant last summer (at least that's what I think happened) and his arm pits were red, raw and cracked from it...)

So I get in touch with Dayton's phys. ed. teacher, who tells me a little bit of a different story.  Dayton's goofing off in the boy's change room.  He's swinging his back pack around, not really focusing on getting ready.  He's playing around and goofing off with the boys instead of getting ready.  She's talked to him numerous times to get ready and asked him to focus on the task of getting changed instead of goofing off, but he's not listening...  grrrr...  yeah, Dayton forgot about this part of the story.  The rest of his story is correct, except for the part where it is HIS idea NOT to participate in gym class.  When told to settle down and get ready for gym or he won't be participating, Dayton's chosen NOT TO participate.  Well I'll be...  In other words, he's being a little puke.  Really?!  I'm so kicking his butt when he gets home.  I'm going through the house and there are chores he will be helping me with today boy...  scrubbing the toilet, cleaning his room, vacuuming, taking out the trash, cleaning the kitty litter...  oh yes...  I can hardly wait for his little royal highness to get his behind home.  'Cuz when he does...  ma'home be all clean!  Grammar or no grammar, ma' home be spotless chil'e.  Oh yes.

Yes, even Einstein had his childish moments

Anyways, the teacher and I discussed how I can support her with Dayton's behaviour

I've asked the teacher to get his EA to fill out the report sheets I get at the end of the day, giving him a check mark for getting ready on time, asking for help if necessary and NOT goofing off.  This will give me an idea of whether or not he is making an attempt to participate in gym and listening to his teachers.

So you see, I get it.  I get my son has a disability, but not everything is to be blamed on his disability.  He knows how to follow the rules, he knows how to get ready for gym.  This is not a part of his autism, he's being a little puke.  A typical nine year old who just wants to mess around, ya know?  A part of me celebrates this, at least he's not delayed in this part of his milestones.


Consider yourselves hugged,

Lou

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