Thursday, 30 June 2011

The Playstation

I had the news on while preparing supper, and a story came on about a fifteen year old arsonist.  I sat down and watched the news story, 'shooshing' Dayton when he'd bring his loud toys into the living room.  He sat down beside me and watched the story.  We saw pictures of firemen working hard to put out the fire or at least prevent it from spreading into the neighboring houses.

Clearly, seeing the house in flames made an impact on Dayton.  After the story, he turned to me and asked:  "Mamma, if our house was on fire, would you rescue my playstation?"
"Yes babe, I'd come back for your playstation after I knew you were safe.  But Dayton, I have a question for you...  If I went back into the house for the playstation, would you not worry about me?  What if you had to decide between my life and the playstation?  Which would you pick?"

I cringed.  Never, ever ask a child with autism a question you're not prepared to have answered bluntly.  Knowing the playstation is Dayton's most prized possession, I knew I may lose to the playstation.  I held my breath in anticipation...

"Hmmmmm...  Never mind mamma, I'd just call dad to come and get it out of the fire."  Whew!  I thought he'd pick the playstation over me!  Hopefully he still feels the love for me after this summer.  We're hitting the books and I'm hoping to improve his reading skills as well as his math.  Writing may be tougher, so I'm thinking of having him work on my laptop.  If I could just teach him to spell, whether by pen and paper or laptop, I'll be one happy mamma!!!  Having Dayton go to grade four next year, knowing that students in this grade are expected to learn from what they read, makes me sad for Dayton.  While I understand that this is why he has an IEP in place, it still makes it hard for me to watch him struggle and see how far behind he is of his peers...

Do I dare ask him this question in September again?

I hope everyone has a fantastic long weekend!  We're going camping this weekend, so you'll hear from me once I'm back home on Monday or Tuesday.

Happy Canada Day!!!

Consider yourselves hugged,


Wednesday, 29 June 2011

Structure, Structure, And Structure Some More

As I've said on my previous post, I have decided to keep Dayton home for the rest of the school year (don't be saying "oh my God!"  We're pretty much at the end of the school year, it's really not that big of a deal.) I've decided to keep Dayton home because of the lack of structure at the end of the school year all schools go through, not just the school Dayton attends.

The last two weeks of school are usually the toughest for kids on the autism spectrum.  Well meaning teachers, principals and school divisions look at the last week or two of the school year as a time for celebrating the end of the year by treating the kids to a break so to speak.  Lots of free play time, movie time, entertainment, etc...  Everyone in the building, adults and children alike, are excited about the coming of summer break, and focus is not high on the priority list.  Unfortunately, for children on the autism spectrum, or kids with ADHD, ADD, ODD, OCD, etc.., this time of excitement is even more crucial for them to have their aid persistently present, their day structured ever more diligently, and their teachers on the ball at all times as they can sense everyone's excitement.  Like other children, they too want to celebrate, the problem is that when their routine get broken, they may not know what to do with themselves.  Dayton does not read social cues well, and his speech is delayed.  Communicating his 'feelings' is a struggle for him.  When he can't communicate what it is that he wants, doesn't recognize social cues or facial expressions, it's as though his primal brain takes over and he can not control his impulses.  Having structure in Dayton's day is crucial. 

Ever hear of the saying:  "Too much good can be a bad thing?"  Very much true in Dayton's case.  While he enjoys free play as much as any other kid, the free play itself needs to be structured and designed in a way he can handle.  I can't just take this little guy out to the park and set him loose.  That would be sheer heaven!  When he plays outside, I must schedule things with him and have his input.

"So we're going to go to the swings first, right momma?"
"Yes babe, always the swings first.  What would you like to do next?"
"Down the slide."
"OK, we'll use the slide after the swings, sounds good buddy.  And then what would you like to do?"
"Feed the birds."
"OK, so we're gonna hit the swings, hit the slide, then go see the birds.  What's after that?"
"Mamma, we don't hit the swings, we swing on them, and we don't hit the slide, we slide down them.  And I don't want to see the birds, I want to FEED the birds!!!"
Damn it!  I used an euphemism.  Well done mom.  "I'm sorry Dayton, you're right."  I just don't have the heart to try to teach him another euphemism today as he gets so frustrated when trying to make it make sense for himself.  A lesson for another day.

Free play at our home's playground with his buddies needs to be supervised and structured.  I love the bayblades!  There are rules to follow, spinning objects, and a way to behave during the game (Pull the cord, wait and watch.  No hands allowed to stop the spinning tops, and most kids with autism love spinning objects).

Another game with rules that Dayton loves is croquet.  This is a game that I can play with him and his friends, the more the merrier and his friends and foes love it when I break out the croquet (which Dayton is not able to pronounce correctly...  He calls it cocaine.  I just pray he doesn't go to school and tell them all he played cocaine with his mamma).  Croquet is so much fun!  Huge hammers with big balls and a track to conquer.  We also enjoy a good game of bean bag toss (haven't got a clue what it's really called, it's the game with two wooden planks with three holes in it, each team throws the bean bags into the holes to score and win the game).  Bocci Ball is another favorite of mine, not so much of Dayton's, but he will play it.  Again, rules to follow this game too.  Pick a color of ball you want to represent you, then try to throw your balls to the little white ball.  Closest to the white ball or the one who hits the white ball wins!

Not only are these games fun, but Dayton is now forced to interact with other children, giving him more opportunity to practice his social skills.  He must wait his turn, and when playing the bean bag toss, Dayton has to play as part of a 'team.'  Huge benefits for both of us!  Games with structure and rules provide Dayton with the opportunity to have a little fun and knowing the rules and expectations of the game keeps him nice and calm.  Until, that is, someone breaks the rules...  Which is why big mamma is always present, at arm's (or croquet hammer, I'm no dummy) length or less away. 

Consider yourselves hugged!!!


Tuesday, 28 June 2011

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.

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!


Monday, 27 June 2011

Don't Question The Princess

"Dayton, time to go inside."
"Dayton, put your toys away."
"Dayton, clean up your room, please."
"Dayton, we need to put on sun screen before going to the swimming pool."
"Because I am your mother and I said so!!!"  (I remember saying to myself before having a child how I would never, ever use this cliche, but I'm only human).
"You always say that momma!"
"Because the sun burned a tiara on my forehead, that's why!  Don't question the princess mister!!!  The tiara shaped tan on my forehead is a sign from God, that I make the rules and you follow them!!!"  (I'm not kidding, it looks like someone dumped a bag of Doritos on my forehead and ate off it.  I've been smearing sun screen on the outline only, hoping the sun will tan the rest of my forehead, but no way.  It's like it knows...)
"Dont' question the princess, do as you're told!"

And it's not just a simply asked "why."  No, no.  That would be waaaaaaay to easy.  Nope.  Dayton's "why" is asked in a nasally, whiny, stomp his foot kind of "why."  Which naturally, makes me go nuts.  My all time favorite is when I call his name, and he either a.) he pretends not to hear me, or b.) when I scream his name loud enough for the entire condo complex to hear me, birds scare enough to poo on the spot, caterpillars instantly transform into butterflies and dogs pee instantly, I get this snotty "WHAT?!"  Not only will this response make my skin crawl, but it elicits a response in my central nervous system which makes my left eye twitch, my teeth bite my tongue, and makes my right hand wanna spank his bony little butt.  But I can't spank it because when I say his butt is bony, I mean BONY.  I fully know that it would more likely hurt me than him, so there's really no sense.  I'm mad enough already, no need to add fuel to the fire.

After I settle down, I think to myself at least Dayton's autism hasn't affected his behavior in this sense.  Many children not diagnosed with any label behave in this matter, most probably end the "why" questioning much earlier in life (Dayton's 9 years old), but the snarly little "WHAT?!" response is quite typical for a teenager, right?  Woo-hooo!  Dayton's ahead at least with the attitude!  Yes, I try to find a silver lining in each situation I'm in with my lil' man.  Now I just gotta figure out how to survive puberty, cause if he's ahead in this department, what's waiting for me during puberty???

Don't worry, I'm not kidding myself.  I know fully well why (pardon the pun) Dayton asks "why."  With autism, if he doesn't have an understanding of "why" things need to be done, he simply won't do them.  I battle with this on a daily basis, especially the cleaning of his room.  Dayton is not as embarrassed as I am to have people see his messy room, no matter what the age of these little people is or grown ups.  To me, a home must be clean and tidy.  When my home is not clean and tidy, I stress right out.  Perhaps my own autism is coming out...  I need to know where to find the scissors and nail clippers.  If I can't find them right away, I have a melt down of my own, maybe because that hang nail is painful and I want the pain to stop RIGHT NOW?  Maybe...  So I hide a pair of nail clippers in my jewelry box, just in case.  I hope no one thinks I'm totally nuts...

I remember having a plaque once upon a time.  I'm not sure what happened to it, I wish I could find it.  It had a quote from one of my favorite women of all time, Mother Teresa:  "I know God will only give me what I can handle."  Before autism came into my life, I had no clue what stress really was, or just how much God believes in ME to be able to handle.  There are times where I wish God didn't trust me so much, but when I look at my lil' man, I can't imagine my life without him.  I love him soooooooo much!!!  I do wish for easier days though. 

Consider yourselves hugged,


Friday, 24 June 2011

Enough Is Enough

Enough.  I've just had enough.  It's easier to build a wall, dig a moat and add alligators and a running stream then it is for the school to care for my child.  As much as I'm going to miss my afternoon naps, my health is declining and I just can't handle anymore.  I've decided to pull Dayton out of school for the rest of the year and keep him safe and happy. 

Perhaps I'm taking the easy way out, but it is only one week of school he's missing, and I think it's the best I can do for my son.  The school obviously has no structure as the end of the school year is fast approaching, and my little man needs structure.  Without structure, Dayton doesn't know what to do with himself.  His assistant has one speed - slow, and Dayton views him as a buddy rather than as an authority figure.  Dayton's aid is super kind and gentle with Dayton, wonderful qualities you very rarely see in a man.  The problem is he has no control over my son.  Dayton is fully in control and in charge of their every move.  He's able to take lunch items from other students, the teacher's desk, the resource teacher's desk, the office staff, etc...  I've replaced them all, and now, due to yesterday's incident (see post titled Ugh!!!  For The Love Of God!!!), I've decided I just can't trust the staff to keep an eye on my babe.

I again received a phone call from the principal, this time giving me the option to either pay the teacher's $200.00 autopac deductible, or pay $50.00 for her friend to fix the dent Dayton accidentally bestowed on her brand new vehicle.  So here I'm thinking "I can not afford your kind of care.  What will Dayton do next that his aid can not put a stop to?"  I just simply can not take the chance of being held responsible for something I can not afford to replace.  Furthermore, I'm not allowed to be at the school every day to ensure Dayton doesn't destroy something, accidentally or intentionally.  So if I'm not there to take care of him, and his aid is not there to ensure everyone's safety, WHO IS RESPONSIBLE FOR MY CHILD and his behavior?  I'm confused about being confused about confusing things that confuse me!

It's not just that this is costing me money.  It's been the last month of non stop phone calls and notes sent home, telling me Dayton took another child's pop, chocolate bar, the teacher's apple, another child's juice box...  Here's my last response to the school of the last note I got from the teacher, asking me to replace things Dayton took from others:

Good morning Mrs.  A,

Last Thursday, Mrs. D's note in Dayton's agenda asked if it would be possible for me to replace:
M's Kool aid jammer (blue raspberry), Fruit go go strips, and another child's mini crispie chocolate bar. 

I'm really not trying to be difficult, but this is becoming difficult for me.

While I can appreciate the effort your staff is making in having Dayton replace items he takes from other students, I respectfully ask that your staff look at my view.  Dayton has taken an apple from his teacher's desk, a pop from the resource teacher's desk, candies, and just recently has taken a pop from another student, and a juice box from someone else, etc (these items have all been replaced)...  Dayton is not learning the lesson your staff is trying to teach.  Dayton has a full time aid, who should be sitting with him during the lunch period.  I am no longer replacing lunch or other items.  If Dayton's lunch period's aid is not able to sit with him, then perhaps it's time I come and sit with Dayton during lunch period myself.  There is also another option.  There is only another week and a half left of this school year.  If the staff is unable to sit with Dayton to ensure he behaves, maybe it's time for his summer break to begin now? 

Let me know your thoughts.   


So you see, I've already given the school the option of pulling Dayton out of school, or coming to the school myself.  The Principal's reply to me was that she understood my concern and that she would take care of the issue.  I was not to worry about it.  So this last incident with Dayton accidentally damaging a vehicle, shows me that the aid is slower than a herd of turtles strolling through molasses.  That's not the Principal's fault. Yet I am still held accountable as Dayton's momma.

Let's hope this is the last email communication I have with the school:

Hi M,

I've had some time to think and talk about this incident with Dayton after your call to me this afternoon.  Dayton has told me that he was not allowed to join his classmates today and had to spend the whole day in the office as a result of what you had told me was an "accident," and you and Mr. J felt that Dayton did not intentionally throw the yo-yo at Mrs. J's car.  Dayton agrees with your impression of the incident.  Furthermore, Mrs. J approached Dayton in the hallway and told him what he did yesterday wasn't very nice.  Dayton tried to explain to her that he didn't do this intentionally and that it was an accident.  She told him to not do it again?  He is very upset about this interaction with your teacher, and was crying when he greeted me as I walked him home from the bus stop. 

I'm very sorry the school year ended this way for Dayton as well as yourself.  I wish you the best of luck in your retirement, and hope to see you come back as Dayton's aid.  As I've said before, you and I may not agree on everything, but I do respect the way you are with my son.  You have a way with Dayton no one else has had, and have him produce work.

In case we don't see each other again, I wish you luck, happiness and health in your future. 


The principal called me minutes from receiving my email, explaining that Dayton was removed from the classroom not for yesterday's incident, but because Dayton and another little guy needed a break from each other.  I'm thinking why is it always Dayton being removed from the classroom, why hasn't the other boy been sent out?  If there's a problem with one boy, why is Dayton not allowed to speak to the rest of the classroom,  but I just can't find the energy to fight.  She also tells me how it is not the school's policy for children not to bring toys to school.  So I'm thinking again, 'OK, so this is just a policy for Dayton?'  Again, I just don't have the energy to argue.  I'm in too much pain, my kidney's ready to explode and the more upset I get, the sicker I feel.  She assures me Mrs. J did not speak to Dayton, but it really doesn't matter anymore.  My son barely ever cries.  He's just to selfish and too much of a boy to cry.  So when he cries, I know there's a serious problem.  There comes a time where I just have to believe what my child says is true.  As fantastic as the principal is, she's not God and can't possibly know every detail of everyone's day.  Dayton had nothing to gain by telling me his conversation with Mrs. J.  He wanted to be comforted by his momma, which again, seldom happens.  

So, I went to the bank, pulled out the $50.00 and delivered it to the school.  Dayton's things were packed and ready for me to take home, saving me time and patience.  Dayton got to see his aid and principal and said his good byes.  It was a bitter sweet moment for me, as Dayton hugged his principal and aid, although he was happy not to return to school.  Now we can focus on each other, do some school work at home, visit the library and read books he's interested in.  I don't have to worry about any damage he may cause for me to be held responsible, or worry about potential incidents because of the unstructured final days of school.  Summer's begun!

Hello??  Yes-I will have a super size double shot mocha Valium and Percocet latte to go please!!  I need something for the nerves and the pain in my back side, literally.  No pun intended, it really is the kidney stone...

Consider yourselves hugged, and maybe say a prayer for my summer's insanity!


Thursday, 23 June 2011

Ugh!!! For The Love Of God!!!

So, yeah...  crappy day.  I got an email from the principal about Dayton's behavior at recess...  which was not good...  another accident...  I'm ready to just pull him out of school...  but feeling if I do, I'm the worst parent ever...  but I can't stand it anymore, and I'm so ready for summer break...  are we there yet?!  Nope, one more week to go...  I just want to curl up in a fetal position and cry or sit in a chair facing the corner, rocking back and forth while I suck on my thumb, mumbling about how much I love my life.  Perhaps what I really need is a melt down of my own.

It seems a little girl brought a yo-yo to school.  During recess, she played with it and it broke.  Dayton picked up a broken piece of the yo-yo and threw it over the fence onto the street.  Of course it doesn't end there.  The piece of yo-yo he threw, bounced off a...  wait for it...  A TEACHER'S BRAND NEW CAR.  That's right.  Of course, since I have a horse shoe stuck up my butt, it doesn't end there either.  There is a ding in the car.  Naturally, since it is a brand new car, the teacher is rightfully upset, and is going to autopac to place a claim.

The principal doesn't believe Dayton did this maliciously or intentionally.  God bless her.  Maybe she's just happy that she's retiring and won't have to deal with this any more, or maybe she really thinks he didn't do this on purpose.  Either way, I'm at a loss as to what to do with Dayton.

When I read the email, I immediately called the school and asked to speak with the principal.  She told me his aid  was standing right beside him when Dayton threw the piece of yo-yo at the car.  "He was just so fast!  But Lou, he feels remorse.  He's writing a letter of apology."

I'm seriously debating whether or not I should either pull Dayton out of school, or show up to school with him.  I figure if I go to school with him, I'd bring my camping chair and book and sit outside the classroom.  Maybe if Dayton knows I'm there, he'll keep his impulses under check?  I don't want to interfere with the classroom, but during breaks, I'd be right beside him, holding his hand?  But this would be embarrassing to him, wouldn't it?  It would not send the right message to his peers, would it?  Not to mention my own health.  My kidney stone, I found out today, measures 6 ml in diameter.  I couldn't run after the little monkey, and he knows it!

Talking to Dayton, he swears it was an accident.  "I didn't aim for the car momma..."
"What were you thinking?!"
"I'm not allowed to bring toys to school."
"So what?!?!"
"She shouldn't have brought her toy to school."
Oh for the love of God!!!  What am I supposed to say to that?
"Dayton, when you bring a toy to school, you play with it all day, and refuse to do anything else."
"I wanna do what the rest of them do."
"I'm sure there are other kids who don't bring toys to school."
"Na-ahhh.  I'm the only one."
"Dayton, it is my rule then that you shouldn't bring toys to school."
"Then you should tell everyone else to keep their toys at home too."
"What about the pop you took from another student?"
"Buy me pop and I'll stop."
"No Dayton.  You know how hyper you get when you drink pop.  That's why I don't buy you pop."
"Then tell the other kids not to bring pop to school."
"Dayton, I can't talk to the rest of the students and tell them what they can and can not bring to school."
"Cause I'm not the principal."
"If other kids jumped off a bridge, would you follow them?"
"Which bridge?"
"It was a metaphor Dayton."
"What's a metaphor?"
Ugh...  Shoot me now.  "It's an expression Dayton,"
"You should be the principal."
And now I'm laughing, and laughing hard.  I think he'd start to hate me if I became his principal.  The school would be on lock down at all times.

I feel for the little guy.  He sees others bringing their toys, pop and chocolate bars, something Dayton's not allowed to have.  The school has told me not to allow Dayton to bring toys to school, so if there are other kids bringing them, he feels he's being wronged.  And he is.  But how is the school supposed to deal with his obsession over the toy he brings?  He can't focus on anything but his toy, so what are we to do?  School policy is to leave toys at home, but it really isn't being enforced if his classmates are playing with bayblades during recess.  Bayblades they brought from home.  He wants to bring his bayblade to school, but I always told him not to.  Other kids bring their iPods or MP3 players to school, but Dayton's not allowed to.  But what can I do?  Demand change in a school I have been persona non gratta in?  What can I do???
Ugh...  If my hair wasn't so damn light, I'd be pulling my hear out, but what's that going to accomplish?

What to do, what to do, what to do, what to do...  Did I say what to do?

Consider yourselves hugged,


Wednesday, 22 June 2011

To Integrate Or Not To Integrate, Why Bother Asking, It's Not Like a Parent Has a Choice

I had the good fortune of hearing my dad's voice on the phone the other night.  He's in Olds, AB right now, working hard, far away from home.  He said he came upon an article that he had to share with me, as it made him think of Dayton.

My dad was born hearing impaired.  I had no idea that there is a Deaf Community Culture out there, similar to the Autism Community Cultures we have.  There are many groups out there working hard to bring about Autism Awareness, probably more so in the States than here in Canada.  In the States, they've dedicated the whole month of April towards Autism Awareness!  Well done!  All these communities work on awareness, acceptance and appreciation for diversity.

One particular Autism group comes to mind in respect to searching for, well... RESPECT for diversity - Age of Autism.  Another is Autism Speaks.

There are many, many adults who have been diagnosed with an autism spectrum disorder, who take strong offense at the idea of someone 'fixing' their autism.  They also don't agree with the idea that vaccinations play a roll in triggering the autism spectrum.  Their goal is to be respected and accepted for who they are as individuals and ask others to stop trying to 'fix' them, as they are not 'broken.'  And what is it, may I ask...  that integration in our schools teaches our children?  Does it really teach to embrace diversity, or does it teach the children with 'issues' to conform to the 'norm?'  Does mainstreaming our kiddos teach all children to accept each other for who they are, or is it to try and teach my child to 'pretend' to be 'normal?'  Ugh...  I hate the word normal... 

While talking to my dad, he asked me to substitute the word Deaf for the word Autism, and see whether or not I thought the author's writing relates to what Dayton suffers through in school...  I ask for you to take my dad's advice as well.

In no way am I stating that deafness is the same as having autism, but there are definitely some similarities.  Adults and children on the autism spectrum disorder, often have sensory processing issues (also known as SPD).  Most on the spectrum have what's called an auditory processing problem.  Dayton most certainly does.  When I asked Dayton "hey buddy, what's two plus two," he just looked at me as though he saw a third eye growing out of my forehead.  After many frustrating attempts at having Dayton answer my question, I finally gave up asking my question verbally, but I'm a stubborn woman.  I know full well my son knows the answer and I'm not letting this go.  I grab a piece of paper and write out my query as numbers instead of words...  "Ohhhh..." he says.  "Why didn't you ask me like this before momma?"  Instead of answering me verbally, Dayton wrote the number 4 beside the math question...

The following is quoted from Deaf Culture:  About the Deaf Community:

even well-meaning attempts to integrate deaf people into hearing society may actually imprison them in a zone of silence. Jostled by a crowd but unable to communicate, they are effectively alone. The problem is especially acute in schools, where mainstreaming has led to the decline of residential schools for the disabled and the deaf and the integration of many such students into ordinary public schools. Since deafness is rare, affecting one child in a thousand, deaf students are thinly scattered. As a result, half of all deaf children in public school have either no deaf classmates at all or very few.

"Mainstreaming deaf children in regular public-school programs," the prominent deaf educator Leo Jacobs writes, will produce "a new generation of of educational failures" and "frustrated and unfulfilled adults." Another deaf spokesman, Mervin Garretson, is even harsher. The danger of mainstreaming, he contends, is that def children could be "educationally, vocationally, and emotionally mutilated."

Most classroom teaching is done by speaking.  If my child has auditory processing issues, how can he contribute to the rest of the class?  If he can't follow verbal instruction, how can he possibly learn in a mainstreamed classroom?   How does this affect my babe's self esteem?  "emotionally mutilated." 

There's a reason why I have a picture schedule for Dayton in our main washroom, and believe me, it is not because the drawings add to the decor.  How I wish I could simply tell Dayton "get ready for school buddy."  He wouldn't even know where to begin!!!  I have to give him one instruction at a time in order for him to comply, not because he's defiant, but because he literally CAN'T. Which brings me back to asking why are we so focused on integration and mainstreaming?  Is it not more important to ensure that our children get a quality education by professionals who understand their way of thinking?  I think it's time for the government to step up to the plate and do what's right, not politically correct.

"If you were a droplet of water placed into the ocean, could you pull yourself out or would you simply blend with the waters?"  Pulling yourself out means you're a unique individual, something everyone strides to be once hitting puberty.  That's why we have kids dressing in 'goth,' expressing themselves with make up or trying to start a new 'fad.'  Yet, we demand our children blend into the waters.  They must be 'just like the other children.'  In the same breath, we ask ourselves and others to 'think outside the box.'  Could it be possible that our kiddos are doing exactly that?  Thinking outside that proverbial box?

Consider yourselves hugged,


PS.  Thanks dad for sharing this link with me!!!  

Wednesday, 15 June 2011

Been awhile since I vented..

Again I want to thank Lou for her kindness is letting me be a guest blogger. I haven't blogged in awhile and part of that is because i was clouded by the fog of goodness. The sun has come out though and I'm fully clear vision now.

As previous readers and those close to me know, Nik going to school has been a 2.5 year process that has been the furthest thing from great. We started right before he turned 4, and so far two schools later. First I'd like to know why schools make promises they know they can't keep. If someone would be just be honest from the start and say, sorry Wendy we just can't do that then at least I'd know my options.

Now just a refresher Nik has SEVERE allergies to almost everything, severe asthma and central & obstructed sleep ap. He also Global Delay and PDD-NOS. Now with all of those you'd think he's get some help and it's shocking how many ppl are surprised when I explain he gets NOTHING. No speech, NO ot, No aid, no modifications, NOTHING. He did get help. Till he turned 5. Then May 31st every single worker/helper/ect closed his file and said Good Luck. Nikolas has learnt to control his aggression which is AMAZING. He no longer attacks children or teachers at school or daycare. That being said, he now brings it all home. I was shocked to find that because he now considered "mild autism" the government WILL NOT fund him, or assist him in school. I've said from day one, it doesn't matter is they are mild or severe they should all be given the same help and support. If we don't support our children now, they will suffer in the long term.

So yesterday was our 2nd follow up at MATC, the last one was a flop as only I showed up(doctor wasn't even there), there was a mix up though so I know it wasn't his fault. However, yesterday I walked into the building not knowing who would all show up as that's how my "team" works. All of a sudden the Principal and my son's teacher walk in the door. So awkward silence, then our wonderful nurse calls us into the room. Our amazing doctor walks in happy as always. We go through the introduction of everyone and I get the famous question, "Where's CSS?" For a year now we've had 6 meetings at MATC and never once has CSS showed up. I answer with "no clue". So we start the meeting anyways. My doctor asks me how things are, how was the move, hows Nik adjusting, ect.. The move went amazing for Nik. Back to daycare has been wonderful. School-"NO idea, they don't communicate". So he asks the school. I'm on pins n needles because i have no idea what they are going to say. "Nik's adjusted wonderfully. His emotions are extreme, he's either very happy or very mad. He's stubborn, has problem completing tasks that he doesn't like. Socially he's doing great. The dr, " that's amazing. So glad to hear. Now let's talk about services, and academics." Well he has nothing. We didn't want to throw too many ppl at him being a new school.(me-BS)He's struggling with academics,doesn't participate in class discussions, completes his tasks but never goes above n beyond on anything. Dr-" so he's controlling his urges but not participating?", " well he sits and rocks, bites his clothes, stares at ceiling, plays with shoes, but NEVER raises his hand to answer, just sits in his own world. " "We're very happy that there has been no reports to the office for his actions." We have no concerns. He can't articulate language, and doesn't enjoy language activities.

So I'm sitting there being irritated, biting my tongue listening..You have NO concerns? He's sitting rocking, and looking at walls NOT LEARNING, but because he hasn't thrown a chair at you he's fine? Dr asks if there is tools or books or programs we can work on during summer to catch him up as he's not fully ready for grade 1. We get the reply, well we don't send stuff like that home. it's not our job. Your job? Your an EDUCATOR. Your job is to educate my child. Then they go on to hump n ha over services n funding for next year. There is NO plan. They are just moving him to grade one and seeing how things go. Apparently because he's controlled at the moment, the government doesn't think he needs assistance. They also don't fund when a child need modifications for learning styles. They only fund for severe behaviour or medical. Although his medical is not considered. Then the school says, ok we're done here. Have a good day and leaves.
I stay behind to talk to the dr. He asked me how i am and I told him. I'm irritated, I'm lost, I'm sad, I'm a mix of things. I think it's amazing that he has learned to control his urges but as he ages, things will start to get worse(doctor agrees), I'm worried that he'll get so far behind because they aren't helping now that he won't be able to catch up(doctor agrees). Tells me to enjoy the summer, if there's any problems come back, but we will touch base in October to let him know how the first month of school has gone. He has the same concerns as i do, nik isn't able to handle the full day and he's burning out right after lunch. he's not learning anything but he's being "good" so it's not concerning. ****ERRRRRR screaming in my head****

I don't understand it. This province "helps" everyone, but we can't help our kids. The only concern the school has is that my son needs to learn to administer and carry his own meds. They are not willing to take responsibility for it anymore. He's mentally 4, and I don't feel safe with him carrying his own EPI pen, and inhaler as the last time we tried he was sucking back his inhaler and a kid shot the epi pen off into the air. Why is daycare so different? He is currently going in the morning and after school. At daycare he has a full time aid(1-1), they carrying his meds and administer it. They modify programs for him. The daycare is in the same building. What's the big difference?

So this is my vent. At the moment I'm lost. I don't know what to do anymore because it seems I'm fighting a endless battle and forgot my helmet and shield. I will never give up on him, but sitting at a really low place right now. I don't understand how the province I was so proud to call home for my whole life, has let my family down so much. I don't understand why our children are not looked after the same way other children are.

Well till next time, take care.

Woe Canada, I Thought You Cared...

Wow, this story really made my toes curl.  I can not believe that a family that contributes to society (the father is an entrepreneur, a son is becoming a dentist), is being forced out of our country because their son has autism.  Apparently, this child's autism costs the government too much money...  What about the money they've wilfully taken from this family in the form of taxes?  As a successful business man, I'm certain this father and his soon to be dentist son will be paying a large amount in taxes, probably more than the government will spend in the care of this family's child with autism.  It's sickening.

Dayton gets a full time aid in school, and in the level three funding application, his school had asked the government for $30,000.00.  I can assure you, Dayton's father and I jointly pay a lot more that $30,000.00 in taxes on our pay cheques, never mind what we pay in GST, PST and now in fuel tax. 

Living as a Pharmacy Technician Instructor in Winnipeg, I've taught many immigrants in a local college.  They've all been hard workers, dedicated students to their studies and wonderful human beings.  However, they did not support themselves.  They got a free education from our government, simply by entering our country and province.  Each low income housing facility in Winnipeg has four empty suites just in case an immigrant needs free shelter.  So it seems to me that this family is being discriminated against due to their child having autism.  Because their financial welfare is certainly NOT in issue. 

So what if his child's care is expensive? We have tons of money put in ridiculous places. Maybe if we had better money management, we wouldn't have this problem.

Reading this story made me ashamed to call myself a Canadian...

Until next time, consider yourselves hugged,


Tuesday, 14 June 2011

I've Got a Bone To Pick With You

I'd like to thank all the wonderful people who messaged me on facebook and emailed me for their concern for my health as well as all the followers who have emailed me telling me they missed my blogging.  I'm beginning to feel half human again, although still very tired.  I will have my ultrasound for my kidneys tomorrow and see where that leads me...  Thanks again for your get well wishes, and for letting me know I have been missed!

Yes...  It appears Dayton 'passion' for guns after his little chit chat with the police seems to have curbed his appetite for the pretend play of weapons.  His new passion?  Bone books.

I know, a little pricey to get the whole complete set, but Dayton's the type that if he's going to have one book that comes of a set, he must have all of them...  That's where his OCD kicks into overdrive.  Also, he's impatient, and unfortunately for me, we have a freaking postal strike.  Not wanting to take any chances, I hit our closest Chapters and bought the complete set, along with the prequel and sequel to the nine books for a whopping $145.00.  I know, you think I'm nuts, but for those of you with a child on the spectrum who struggles with reading, you can understand that as a parent, you would do whatever it takes and spend whatever the amount of money to encourage your child to read.  The best thing about these books is that they're like a comic book, so Dayton gets the visual pictures of what's happening, the wording is in bubbles above the speaker, showing Dayton who is speaking, and he sees the words. 

He picked up his first Bone book at the school library, so if they carry it at the school, there should be no issues over how appropriate it is for him to read these books, at least one can hope.

Another passion that's surfaced...  Bayblades.  Oh yes...  It seems those things are back, and there's other children where we live that love the Bayblading as well.  That's awesome.  Before I knew it, Dayton sat outside in a circle of five other children like a catnip crazed cat, without arguing, or using his hands, remembering to use his words and played with FIVE children.  Dayton's max number of kids he can play with at a given time seems to run at about two. 
Even though he came in third place, he didn't end up having a meltdown.  Needless to say, I am thrilled!!!

  One more week and a half, and school will officially be over, with summer break ahead.  I can hardly wait.  While school life has improved with my little guy, I really look forward to not having to feel on pins and needles all day, and never having to let go of my cell phone, just in case.  I look forward to no more phone calls from the school, no more threats of suspension, no more early pick  ups and being able to relax.  I'm thinking of drowning my phone in the swimming pool...

Consider yourselves hugged,


Friday, 3 June 2011

Ah yes... the swimming pool!

Imagine what the world's largest checker's board would look like...  That is what it is like to have a child with autism.  If you don't think several moves ahead, you're going down, in the game of chess, you're facing a check mate.  While this may seem simple to some folks, let me assure you, it is not easy to out think a child with autism.  Their way of thinking is just 'different,' and therefore, so is our parenting of these 'think outside of the box' children.

Dayton's way of thinking pretty much goes along these lines:  "There's nothing that can't be solved with a calm collected mind, an aluminum baseball bat, and a shiny pair of stainless steel nunchuks.  I don't have OCD, I just want things done my way, 'cause it's soooooo much better.  Follow the rules, or I'll call 911.  I know you said no, but I really want it, so I'm gonna do it, no matter what the consequences are.  Finder's keeper's is not the same is stealing.  This is my routine, don't mess with the system.  Are you talkin' to me?  'Cause if I don't like what'cha saying, I'll kick you (or call 911).  There's no pinching in wrestling.  Vancouver Canucks are the only hockey team that matter, don't you dare defy me on this.  I only do school work for Mr. J, not you.  I want to do my school work in the hallway, so I have to do something bad to get sent to the hallway.  I always play on the swings at recess, get off, it's my swing - ALWAYS (going back to this is my routine, don't mess with the system).  He started the fight, I must finish it, cause I can't move on until I'm done with him.  If you don't listen to me the first time, I'll push you to get my point across, I'll only tell you once (and yet, I've got to tell him three times to pick up his socks).  Even when I'm wrong, I'm right.  If I am smiling at you, you should be worried."  etc. etc. etc...

A lot of the time, Dayton gets so caught up in what he wants to do with the kids, and when they transition to another game, Dayton sometimes is not able to transition.  Kids are screaming "stop it Dayton," (especially if they're transitioning from tag to playing ball or something lower paced), not understanding he's just not able to stop and move on to the next game they're planning.  They view Dayton as a little puke who pays attention 2% of the time and not listening 98% of the time.

And so, every time he goes outside (the play ground is practically in my back yard, as is the swimming pool), I must accompany Dayton.  I can not just sit on my patio and 'listen.'  I sit out there at the play ground, on my camping chair and play referee, cleverly disguised as a responsible adult.  I sit there and I am two seconds from being on Dayton like white on rice in a glass of milk on a paper plate in a snowstorm.  Anything goes down, I'm there, pronto.

Along the way, we're guaranteed to meet a new kid, and I dread those days (see this is my routine, don't mess with the system).  Ugh.  If the new kid on the block is old enough, I can try to explain autism to them.  Just about every time the kid will say "So you mean he's not normal..."  and I say "ME? Dayton?  Normal??  How can you insult us in this way!"  I always smile and wink at the kid, so he knows I'm trying to have a little fun with him, but deep down, I'm not having fun...  What I really want to do is smack the kid aside the head, but I'm pretending to be the adult here and must sit pretty and maintain my 'authority.'

And now...  Our swimming pool is supposed to open this afternoon...  Ugh.  Is your body bikini ready yet?  'Cause mine sure ain't.  Hasn't been since 2002.  I tried going to the gym, I really, really did.  The last time I went, I noticed something peculiar that I had managed to miss on my very first visit...  I was the fattest chick in the place.  I spun on my heel and walked straight to the nearest McDonald's (right across the street) and buried my sorrows in a McFlurry, thinking someone needs to open up a gym for fat chicks, ya know what I mean?  

Anyhow...  So no, I am not looking forward to the walk of shame to the swimming pool, in my bathing suit, where I will no doubt be the biggest girl again.  I make sure to wear a sarong, so it's really only a few second that the sun sees my legs and rump.  But hey, it's not like it's a long walk.  It's not like I can sit by the pool with one of 'em drinks with a pretty little umbrella in it and watch Dayton swim...  Nope, I gotta be in the pool with him, very far from relaxing when he keeps trying to drown me.  He finds it funny when I gasp for air and turn blue in the face...  Which saves me in a way, because once I'm in the water, no one can see the rest of my body, and I think I have a very pretty face.  Yeah, my babe's got my back.

Wish me luck, and consider yourselves hugged!


Wednesday, 1 June 2011

911 Call

Oy vey... 

I had Dayton's 6 year old buddy and his mom, sister and sister's boyfriend come over for supper.  Glen made us all his famous chili, and for those of you that love his chili, the 'secret ingredient' he won't tell anyone is half a gallon of ketchup.  Yes Glen, I'm sorry, but the truth must be told!  Sometimes he even puts a carton of molasses in it.  Everyone eating it walks away from the table feeling bloated, flatulent and suffer from heartburn.  Fortunately my guests loved it (with the exception of Dayton and I), even having seconds. 

While the adults go outside for 'adult conversation,' the boys play their hearts out.  Pretty soon, Dayton's little buddy complains that Dayton is using his toy cell phone to call 911 because he's not playing how Dayton wants him to play.  I explain that it's only a toy, and he can't possibly reach anyone through it.  Dayton must have heard me... 

Minutes later, Dayton's little buddy says that Dayton is using the real phone to call 911.  Glen hollers at Dayton to bring the phone to him, forgetting I have 3 cordless phones in my home.  Ooooops.  Thinking no more of the situation, we continue enjoying the adult company.  Our guests leave us shortly after 9pm. 

At 10:30pm, we hear a knock on the door.  I open the door to a pair of police officers who ask me if I'm OK.  They had received a 911 call over a domestic dispute?!  O.M.G.  I quickly call for Dayton to get out of bed and meet the concerned police officers...

Dayton sees the police standing at the door, and looks scared.  Good!  He should be scared...  I'm furious...  Quick thinking, not possible since I'm stoned on Tylenol 3's trying to battle the pain of these cursed kidney stones...  I'm praying the police officers don't realize I'm under the influence and ask me if I'd been drinking...

"Dayton, did you call the police?"
"No, I called 911."
Police officer number 1:  "Why did you call 911?"  And I know the answer to this, as you just can't ask Dayton 'why.'
"I don't know."
Me:  "Dayton has autism, I'm sorry, let me try to ask.  Dayton, what happened for you to call 911?"
"He (referring to his friend) broke the rules of the game.  He broke the 'law.'"  Oh my dear Lord...
Police officer 2:  "Dayton, do you know that calling 911 when there's no emergency is against the law?"
"But it was an emergency."  Ugh!!!

Finally, my brain kicks in and I think of Dayton's obsession with guns...  I tell the officer of the incident of the BB gun, where he took his buddy's BB gun and shot his little buddy just above the eye.  I ask the officers to talk to Dayton about the dangers of guns.

Police officer 1:  "Dayton, guns are very, very dangerous.  If you were standing at the end of the hallway with a toy gun, and I walked in this home, I wouldn't know if it was a real gun or a toy gun, and I would have to draw my gun out and point it at you.  I would scream for you to drop your gun, and if you chose not to, I might have to use my gun."
"Have you shot anyone with your gun?"  The police officer has Dayton's full attention.
"Yes, I've had to use my gun, and it never ends well Dayton.  Guns can kill people.  They're not like video games where you have a second chance.  Getting shot is very painful, and the person getting shot does not get back up on his feet."

The officer further explains how if he was just a little older, he could have gone to 'juvenile detention' over the BB incident, which he explains is kind of like jail.  Kids are removed from their homes and their parents may only be allowed to come and visit them for an hour a week.  He stressed to Dayton that BB guns are dangerous too, and should not be pointed at people, even if you don't think the BB gun is loaded.  These guns are dangerous and shooting someone with it is an offense. 

Police officer 2:  "You wouldn't want to not be able to see your mom every day, would you Dayton?"
"No, I guess not."
"Then you have to be more responsible, and take this gun business very, very seriously.  I don't want to have to come pick you up and take you away."

I hope some of this sunk in for Dayton.  In the mean time, just to be certain, I've hidden all my cordless phones, while stoned on Tylenol 3's...  This means I can't find the blasted things.  So if you call, please be patient.  I may not find the phone right away. 

Consider yourselves hugged,