Thursday, 6 February 2014

It Takes A Village To Raise A Child

Temple Grandin's mom said it best:  "It takes a village to raise a child."  At first glance I had no clue what she was saying, nor did I feel it appropriate for any parent to ask anyone to help raise their own child, with or without a disability.  Yes, I became all judgy and righteous.  Having had time to reflect on this quote while going on with my daily life has shed some truth on Eustacia Cutler's motto.

My life is a busy one:  I parent six children, four of them have an autism diagnosis along with ADHD, and the fifth has been diagnosed with ADHD.  We have swimming, hockey, bowling, skating, youth group, Sunday school, PACE kid gymboree and parent support group, autism therapy called "I Can Pretend," and then of course school.  Having my children participate in these activities means they are exposed to other people, with their own unique characters.  Of course I knew this prior to enrolling me children into their activities, but didn't really give much thought on how these other people would affect my children's lives.  I just wanted my son and daughter to have fun bowling, my daughter to learn how to skate, my son loves hockey and I wanted to give him the gift of participation, my children to have a relationship with God, get an education and make some friends.

As parents, we don't really think about how adults in charge of whatever activity you enroll your child in, participate in RAISING our children.  Especially when your child is on the autism spectrum.   If you're fortunate enough to have your child invited to a birthday party (I know, how often does that happen, right? But if it did...), the parent would sit beside their child and stay for the duration of the party.  Parents of children on the autism spectrum are very involved with their children.  We are there to guide and correct as needed.  We gradually back off to see if our child will contribute in play with others and learn from adults not related to them...  and they do.  The adults teaching our children are helping us RAISE our children.

Reverend Mark contributes in raising my children every Tuesday, Friday and Sunday through his teachings. Susan at Kildonan United Church helps in raising my children on Friday nights through her Youth Group.  On Sundays, when I'm not teaching Sunday School, another Sunday School teacher contributes in raising my children.  The hockey coach helps raise Dayton through coaching him in hockey.  The swimming coach contributes in raising my children during swimming, the bowling employees help Dayton and Amber and Demetra helps our family raise Amber and Dayton through "I Can Pretend."  The parents who bring their children to PACE Kid's gymboree contribute to raising my children as I help in raising theirs.  When I talk about PACE and the kids I meet, I refer to the kids as "my kids."  Beverley's son Evan always runs up to me and asks for a kiss from "Lou."  The teacher who takes the kids skating...  she's contributing to raising our children...

For parents of children on the autism spectrum it can be tough to let go of their children and let someone else help teach their child.  I know it is that way for me, which is how I ended up becoming a Sunday School Teacher.  I worry about my children and want what is best for them.  I also don't want someone else feeling overwhelmed when my children struggle through their lessons.  I feel responsible for my children's behavior, and want to be there to help and coach my children, and while I do, I learn valuable lessons myself.

I know I'm not alone in struggling with this concept.  There's many of you out there feeling you can't go out, I've been there.  Feeling secluded in your home as you're afraid of your child's reaction to going out and doing something out of routine, and worried about other people's reactions.  I see it all over Facebook, blogs and other articles, where mothers are sad because their child wasn't invited to a birthday party, or their child has no friends, or their child isn't involved in any extra-curricular activities, etc...  I was there once.  I spent years afraid of people's reactions, and it was so much easier to stay at home where Dayton and I were safe. When I tried to venture out, even just outside my apartment into our courtyard, there were parents who thought Dayton was too aggressive, too wild.  I build a cocoon around us, where we were comfortable, lonely, but very comfy.  Dayton's grown the last two years since I broke out of our shell.  It was tough at first, but we did it, and now there's no going back.  Could it be that we just "lucked out" by finding the right place?  Perhaps, but we never would have found the right place had we stayed home instead of ventured out in search of it.  And if all else fails, create one like I did.  PACE Kid's gymboree was selfishly created by my need for Dayton to make "quality friendships."  Yes, I said selfish.  I wanted MY child to have a chance to learn, grow and make friends.  I was getting no where in my back yard.  I'm a baaaaad person.  Fortunately for us, our Kid's gymboree has grown, and not just in size.  We are actually liked.  A lot.  And I am proud of this.  And the kids...  I LOVE THEM.  Like I said, they're "my kids."

It takes a village to raise a child.  It really does.  Get out there!

For those of you struggling, email me.  Message me.  Call me.


Above all, consider yourselves hugged,

Lou


Sunday, 26 January 2014

What I Saw

I am doing what's called plagiarism.  It's just too important not to share with everyone.  Hope this is an eye openner to teachers, educational assistants, guidance counselors, resource teachers, principals, parents, caregivers, etc...

This post was written by Kitt Mckenzie also known as the AutistcChick.  You can find her blog at autisticchick.blogspot.ca.  Kitt herself has autism, so I think we should all take the time to read her blog and glean some wisdom from someone who lives it, every day.

What I saw



I left the gym, I had to, because the music made me uncomfortable. I stood by the door. 

I waited. I turned toward the door to the gym, and I saw a classmate burst through the door, an aide inches behind him. The aide grabbed a strap on his vest and stopped him cold. The student struggled. Aides thronged at the little windows.

I know what they saw. 


They didn't see someone asking to be taken for a walk. They didn't see him begging to have some space. 

They saw an escape attempt. A noncompliant escape attempt. A student trying to outsmart the teachers, to get his way. 

They saw someone who didn't understand the point of P.E.

They saw a runner.


He pulled away, and the aide pushed him back  through the gym door, shouting "In we go! In we go! In we go," his hands pulling and pushing as the student dug his heels in. Everyone else "encouraged" from the sidelines. I saw too much happening.

I saw an apraxic struggle. I saw a nonverbal student being pushed through a door in a frenzy of movement, everyone shouting at the same time, bent over with hands thrusting at his back, pushing against the doorframe and struggling to stay upright. I saw too much, too much.

I saw a blur of movement and sounds coming at me from every direction, I saw the ceiling the doorframe the floor somebody's hands everyone shouting. I saw the final thrust through the door, met with bright lights and cheering, everyone applauding the nice save! 

I saw dizzy and disoriented. 

I saw what he saw.


I saw a classmate who couldn't respond to prompts because they were coming too fast, and who couldn't comply because everything was being thrown at him at once.

He slumped against the gym wall and slammed his head back. The act was met with a sharp reprimand from a bystanding aide. And I know what they saw.

They saw defiance. Headbanging behavior. A tantrum.

I saw a student trying to block out external input. I saw. Everyone else gawked and chattered as the other kids did the warm-ups. I stood by helplessly.

I saw a humiliated man sitting against a wall in a corner, helpless and outnumbered, with no way to communicate.

 I saw what he saw, the flash of students flying all around me and I saw people surrounding me, cheering, cheering for the aide as though it was some big victory to drag a student back into a classroom. I saw the world whirling around my head and it hitting the wall just to drown out the noise. 

I saw that nobody was asking themselves how he might feel. I didn't just see the defeat, though, the lack of dignity or respect; I saw humiliation. Oh, yes, I saw. Pain.

I watched in horror. I felt for him. I felt with him. An aide, concerned that I had left, asked me if I was ok. Then she smiled at me knowingly. Chuckled, "He's having a little fit."

No. That's not what I saw.

I saw an overwhelmed student trying to escape a hostile environment. An attempt to find a safe place, or a bathroom, or some water. 

I saw a hasty and disjointed "rescue" that fried his emotions and ability to think. I saw visual, auditory, vestibular and tactile input slam him like a truck. I saw vestibular upheaval, and I saw desperation and fear and frustration because nobody understood, not one of them. 

They saw a fit. 

They didn't see what I saw.

*****


I know, I mouthed across the aisle. It's ok. I know. He smiled back at me.

I know. 

The bus engine rumbled, and we began to pull out of the lot. They were still talking about him, imputing motives based on their own experience. I knew that he could hear them. That they didn't really care. That it wasn't my place to correct them. To try and educate them. Not the student's place.

 I saw the look on his face, and I knew that nobody understood. 

He sat alone, leaning against the vinyl of his seat, his expression fraught with distress, his eyebrows knit. I knew that they were fine, and they could sit there and casually theorize about it, but that he was still coming down. I saw the look in his eyes. I didn't know what to say. 

I saw his hand, resting on the seat. Hesitating, I leaned into the aisle and placed mine next to it. I didn't know how else to say I support you.

His thumb wrapped itself around two of my fingers, and for a moment it was like that. Then he lifted his hand and took mine in it.

I squeezed. I know.

We stayed that way for about a minute. The bus rumbled down the street, curving around the corners, my hand in his. 

They said I helped calm him down. Sometimes people underestimate what it means to acknowledge someone's humanity. To see it. I don't know what they thought my gesture was, but we knew what it was. A show of solidarity. A quiet one, not a trumpeting fanfare, but a whisper. I know.



This is what I saw. Very different from what the teachers saw.

I don’t know exactly what he saw. I believe that it was terrifying.



But I hope . . . I hope . . . that after the terror . . . I hope that he saw a friend.

Thursday, 23 January 2014

Mark This Important Day On Your Calendars!!!



Please join us on April 2, 2014 (during spring break) for our 2nd Annual World Autism Awareness Walk and Rally.

This years walk will begin and end at the Manitoba Legislative Building. The walk will begin at 6pm.


This years is going to be bigger and better with our focus being Autism Acceptance and Understanding. We will again have brilliant speakers, entertainment, coffee and goodies. Autism Jewellery and PACE T-shirts will also be available for purchase to help cover some of the costs of this event.


So bring your family, friends, neighbours, respite workers and join us in marking this day for Autism. (Please only service dogs as there are numerous children who are afraid of dogs.)
Oh yeah, and please pray for warmer weather.






As always, consider yourselves hugged,

Lou

Saturday, 11 January 2014

Sunday Mornings

Just a little peek at our Brady Bunch Sundays:

Every single Sunday is the same:  the toddlers are fussing and cranky, Katie refuses to wash her hair and decides instead to experiments with make up, which of course makes me get a wee bit dramatic:  "Girl, there's a fine line between wearing make up and looking like you got attacked by a pack of Crayolas!"  Amber wants to wear gym shorts (they're short, I hate them, and it's cold outside; we're in the middle of winter), and Dayton wants to dress to the nines - dress shirt and tie (completely ignoring that there's a stain on his tie, and the dress shirt).

The five year olds decide they want to sit at the stairs of the altar, be the center of attention...  as I pretended I don't notice they run up the isle to the minister.  Naturally, Dayton wants to correct their behaviour as they've broken the cardinal rule:  "though shall be on your best behaviour in church..."

"They're not supposed to be there.  I'm gonna go get them!"  I know exactly what Dayton's idea of getting them will be:  Dragging them from the altar back to us (and we just HAVE to sit at the back of the church, because that's the routine and we can't break the routine), with the little ones screaming and kicking as they're not getting their way, typical behaviour for any toddler that doesn't get what they want.  I do my best to keep him rooted beside me, finally give up and take Amber, Katie and Dayton to Sunday School a wee bit early.

On one particular Sunday, we had a change I wasn't prepared for:  the Sunday School room was being used as a dining room to feed the congregation...  I went into full panic mode.  Change and autism do NOT mix.

Thankfully, the reverend came to rescue me with the five year olds, and led me to another room for our Sunday School.  Only one more child came to join us, making it a very, very small group.  Thank goodness because the three older ones were on the verge of a meltdown as we had another curve ball change thrown our way.  My babies on the other hand, took full advantage of the situation, running to sit on Reverend Mark's lap.  John and Athena LOVE reverend Mark, and don't even try to hide it.

Reverend Mark held the lesson that day, and I love it when he takes a break from sermons and comes to teach the children.  His lessons are always rich, leaving me with the feeling I've just walked away from a sermon.  Most importantly, reverend Mark is super supportive of the kids and even comes to pick them up for youth group in his own vehicle!  The congregation is very much involved with all of the children and supportive of special needs children AND adults.  The congregation of Kildonan United Church is in the process of fundraising money for a special electric chair for one of the elderly congregation members.  I've never seen anything like it before.  When one member of the church is affected, the whole gets involved as one.  It's incredibly amazing to be a part of this group of people who genuinely care about their church members.  And now, they've opened their doors to our autism community every Tuesday night!  I consider my family to be very fortunate and blessed to be able to be a part of this group of wonderful people.  Anyways...  off track again...

Reverend Mark made pretzels.  Not just any pretzels.  The best ever!  I've never had a fresh from the oven pretzel.  This was AMAZING!  He's an amazing baker, one who bakes breads from scratch...  yum! Breaking bread with the kids was not only fun, but it made them feel important, plus we got a good lesson on why we break bread.

Unfortunately, the room we were in was right above the sermon...  And reverend Mark finished his lesson before the sermon was over...

If I have God before me, Jesus beside me, the Holy Ghost within me and am surrounded by the Lord's angels, who or what shall I fear?  THE TODDLERS!  A bored toddler is a handful of trouble, but I have two of these little angels.  I broke out in a sweat!  Dayton, Katie and Amber are very much rule followers, and the rules are simple:  behave at church.  The toddlers haven't really been observant of this rule...

Of course, Reverend Mark assured me that everything was all right, children are children and the congregation would understand.

So, one may ask, why do I continue to do this every Sunday?  My answer:  The greatest thing a mother can do for her children is to give her children to God, teach them to love, respect, honor and worship God, and teach them to talk to God.  I won't be around forever, my time and Mike's will come.  When that time comes, I want my children to know they are not alone.  I am thankful my mother gave me this same gift, as she was called home eleven years ago, and I miss her so much.  I am thankful for God's unending love that holds me tight when I feel alone in my struggles.



Consider yourselves hugged, (and daddy Paul, if you're reading this, I miss you and mom very much)



Lou

Tuesday, 7 January 2014

Out Of The Mouths Of Babes

I have the most wonderful children.  No, I didn't give birth to all of them, but they are mine in every way that matters.  I don't have step kids (Ashley, Katie, Amber, Athena and John), I don't walk on them, and my biological son Dayton whom I did give birth to (well, had a C-section) does not have half sisters (Charlie-Anne and Summer); they're not cut in half.  We're a couple of families blended together into one.  So, introducing to you, a small sample of how my children think:

"Mom, I know Santa doesn't exist."
"Say what?!  Yes he does!"
"Mom, come on.  I know Santa doesn't exist, I heard it at school.  I'm fine with it."
"Keep your voice down, the kids will hear you!"
Whispers:  "Mom, I know Santa's not real."
"Well then where do the presents come from buddy?  You think they just magically appear?  Who else but Santa would bring them?"
"Mom come on!  I know you and dad buy them.  I kind of busted you last year."
"Oh..."
"What I really want to know is who eats the cookies?"
"Ugh...  I eat the cookies, it's me, I love cookies."
"And the milk?  Who drinks the milk?"
"Dad, you know how much he loves his milk."
"OK, that makes sense."


"You can't be a woman, you're a mom!!!"


"I don't want to go in, just leave me in the car."  (It's like -30 with the wind chill.)
"I don't think so kiddo."
"Why?"
"Well, for one, I love you.  And two, it's illegal."
Whispers to me:  "I won't tell anyone."


"And lead us not into temptation, but deliver us some e-mail."


Older kid:  "I bet you're 40!"
Younger kid:  "No, he's 80!"
Older kid:  "85!!!"
Younger kid:  "I'm guessing 100."
Older kid:  "No, he'd be dead then.  100 is when you die, he's still alive."


"If Jesus walked on water, could he do a head stand?"


Sitting in the front seat beside me driving home from a visit with a friend, getting car sick.  I'm singing along with the music trying to get his mind off it.
"Mom, you know I love you, right?"
"Aww, thanks babe!  I love you too!"
"Please stop singing."
"Why?"
"You're making me sicker."
So much for that idea...


"I need super glue and a non stick frying pan."
"Why?"
"I wanna know which ones a liar."
"Say what?!"
"Don't you wanna know which one is telling the truth?  Super glue is supposed to stick to everything, and non stick pans are supposed to not stick.  You said you hate liars.  Let's find out which one we hate."


At a restaurant...  the waitress taking our order...
"I wish to eat the unborn."
Absolute silence...
"Eggs, the boy wants to eat eggs..."


Again, at a restaurant...
"I want meat on a stick."
"Say what???"
"Meat on a stick with sticky sauce."
"On a stick?  I don't understand."  Meltdown in 10, 9, 8
"Lots of sticks side by side, meat in between..."
"Honey, I don't understand..."
7, 6, 5
"With the sticky brown sauce!!!"
People are looking now...
Drum roll please...  "RIBS!  YOU WANT RIBS!!!"
6, 7, 8...  Smile.  Thank you Lord!


"Momma, you're skinny."
I'm huge...  "Well, thanks babe."
"Yeah, you just have a lot of skin."
And just like that my happy moment is gone.


"I don't need a bath, can't you just Febreeze me?"



We've learned a couple of things along the way this year:

1)  Never say "maybe" to our children.  The word "maybe" to them means:  "I swear on my life this will most definitely, certainly and beyond a shadow of a doubt happen."

2) Arguing with teenagers is like wrestling with a pig in the mud.  Sooner or later you figure out (in my case through my child's counselor) that they're really enjoying it.

3) We appear to have several invisible kids living in our house.  They are named "It wasn't me," "I don't know," "I'm bored," and "Why me?"

4) I can always count on my daughters to walk up to me for no reason to give me a hug and say "I love you mommy" or my sons to jump on me when I least expect it, wrap their arms and legs around me like spider monkeys and kiss my face all over, telling me they love me 'like crazy.'

5) God may not have answered our prayers the way we wanted Him to, but when we've stepped back to look at the whole picture, we see He's answered them in the way it's best for us.  Kind of like we do with our children...  In other words, God equals daddy to us.

6) There is a special bond between mothers and sons which can never be destroyed.  I've questioned this bond much in the last year between Dayton and myself, and I see now that no matter what happens, or who he's with, no one can destroy what we have, and I am grateful.

7) My new favorite word is "Really?!"  It works for almost everything.  I'll give you a brief example...  I have a rule for my sons:  No play fighting, as John is so small and Dayton is stronger than he realizes.  When I catch them play fighting, I loudly say "Really?!"  They boys back off into separate corners of the room.

8) Courage isn't the lack of fear.  Courage is the willingness to move forward even if you are scared.  My sons show me this every day.  My daughters are a bit more squeamish, but they show me they have courage as well.  I'm very proud of them!

9) You know you're in trouble when your teenager comes to you and says "You know I love you, right?"  A conversation starting with that sentence means nothing but trouble, especially when said teenager has autism.

10) Raising little boys is not just a job.  It's an adventure; with sound effects.








Consider yourselves hugged,

Lou



Monday, 16 December 2013

An Evolution In Autism Diagnosis: Lets Bully, Manhandle And Threaten Parents Of Children On The Autism Spectrum

I have struggled with this story for eight long months.  The father approached me for help in his situation, and to be honest, I was hesitant in doing so because of what was happening in my own personal life.  Being accused of considering myself an expert in autism did not help, and I had neglected to continue my work on Autism Diva Help as a result of my personal life and accusations.  But this story really needs to come out to light.  Our children on the autism spectrum need a voice, and while I am NOT an autism expert, I have been wanting to advocate for our children for a very long time.  I also want to bring awareness to a society that likes to brush anything not "normal" under the rug.  You know, pretend that things that aren't pretty just don't exist.  That is why I created Autism Diva Help in the first place.

I also wanted to make sure I had all the facts straight before publishing this post.

I am grateful to be living in the Seven Oaks School Division.  The educators are actually educated and want to educate themselves further to better understand what a child on the autism spectrum may be experiencing. I had the pleasure of seeing some Dayton and Amber's school's staff at the Temple Grandin appearance at the end of October. Dayton has attended two schools now in this division, and doing extremely well.  Perhaps a part of his success can be attributed to the additional work we do at home with him, as well as his age.  He is now a "tween," turning twelve in February.  Dayton has more understanding and experience to fall on as well, giving him more "tools" in his "tool box," enabling him to mainstream more successfully.

Not all parents can say the same in their child's education.  As you know, Dayton and I have been "there" before.

I've had on and off communication with a father of two young boys attending elementary schools for the past year and a half.  He's joined our Autism Winnipeg PACE facebook page networking with other parents and looking for support.  Last April, I finally got to meet him in person with Mike, and he told us his story over a hot cup of Tim Horton's coffee.

Here is his story:

This father has two children, both boys, actually they are twins.  One has ADHD and the other is on the autism spectrum disorder.  While the child with ADHD and anxiety issues had an educational assistant since grade one, the child with autism who is in more need of an EA did not have one until shortly before April, even though everyone agreed he had the most aggressive issues in school.  The little guy's attention and behavior interfering with learning came in the afternoon, and the school's answer was to keep him in the hallway rather than give him a much needed movement brake.  He finally got level two funding.  In April, the boys were nine and in grade four.

These issues came to an all time high in April, ending with the principal calling the police.  Yup, another classic educator not educated or perhaps discriminating against a young elementary age child with developmental disabilities.

It has been apparent to the father that an elementary school in Pembina Trails School Division has had a history of "getting rid of" less than desirable children.  But this school was in the family's catchment area, and we know how school divisions like their catchment areas.  Just try to get your child transferred to another school, I dare you.  Then email me back with the outcome.

During the course of a few years, this elementary school had used CFS as a weapon against the parents, because (yes, here comes my all famous sarcasm) as educational professionals, it is common knowledge that autism is caused by the parents, it is a "discipline" issue.  Boy, I'm so glad we live in 2013, not in the mid 1950's.  You remember the cause of autism back then was "refrigerator mothers."  As you can see, we've evolved in discovering the true cause of autism, haven't we?

Anyhow, the principal called CFS numerous times, and at one time went as far as trying to have the young lad put into residential care.  In April, due to an autistic meltdown, she decided the best approach was to call the police, without telling the police that the little guy had autism and focused on the real problem (dripping with sarcasm):  the parents, whom I might add were not in the school.  She waited until after the police came to the school and the child to calm himself down before even calling the parents.  This incident happened on a Friday.  I mention this because that same week on Monday prior to her calling the police, and Thursday, the day before calling the police, the principal had called the father complaining about his son's behavior and actually told him that she was tired of calling him and threatened to call the police instead 'next time.'  Threats of police involvement were there for a few weeks before this fateful Friday.

I've been through many IEP meetings, and none of them had mentioned calling the police in the behavior plan.  It's always call the parents.  In my biological son's case in the past, it had always read call mother, for just about every issue known to man.  Calling the police on an elementary school child is 1) ridiculous and 2) a way to show the parents who's in charge.

As soon as the father opened the door to the school, he was greeted by the head police woman in charge, who pointed towards the principal's office.  The principal was waiting for the father along with four more police officers.  Ahem...  A little overkill, no?  Even Dayton (7 years old at the time), who had threatened to shoot his principal in the face had two police officers waiting for me outside of the school.

The principal began to tell her story, admitting that she had placed her hands on the little boy's head and pushed him backwards into a closet several times...  Ummm...  HELLOOOOO!  In what moment of insanity does someone decide shoving another human being by the head into a closet is 1) appropriate and 2) comforting???  You don't need to have autism to feel completely ridiculed and as though you are worthless when someone does that to you, do you?  Furthermore, just a week prior to this incident, a meeting was held with the principal and the boy's psychiatrist and parents of course, in which the principal was explained to by the psychiatrist that the little boy should not be forced to be in a small space by himself, as this would not help in any way to settle the child, in fact, it would cause extreme anxiety and exacerbate the behavior further.  I'm sorry, but you really don't need to be a psychiatrist to figure that one out.  It's not rocket science.  The father, mortified, simply asked a single question:  "Did you think that was safe?"

The father tells me that the police immediately came to the principal's rescue.  The police threatened to arrest him and bar him from the school, which quickly made the father choke up and come to the realization that the police were not there to be helpful to his child, they were there to sustain the authority of the principal.  In the principal's own words:  "We've wasted enough time on this 'proactive stuff,' we're moving on to 're-active' now.  Let's go back and talk restraint again."

The father was speechless.  He tried to walk away towards where his son was drawing, and the lead police officer grabbed the father by the arm and said that she would escort him.  The father, concerned about his child seeing him escorted by a police officer, pulled his arm away from the woman, explaining as politely as he possibly could in this situation that he had picked up his son many times and new the way to go, but it didn't matter.  She would escort him, end of discussion. The police and principal further stressed the family by escorting the family with the boys out of the school at the end of the day when all children were being dismissed, with the police threatening the father that they could arrest him and ban him from the school, because the father's body language was 'intimidating.'  This was all done in front of the children.

Needless to say, the parents decided that this school was no longer an option for their twin boys.  They have moved to another school, where some of the toxic brew seemed to have followed them at first, but now that the school staff have gotten to know the family and the boys, they're all doing much better.  This new school is much better equipped to help children on the autism spectrum, having two quiet rooms and a sensory room, whereas the old school had one quiet room, a windowless supply closet converted to be a quiet room. The principal is more informed and aware of autism and acknowledges that autism is not a "discipline" issue, it is a developmental disability.  She has full confidence in the parents and sees that they only want what is best for their children.

The boys are now ten years old and in grade five.  As of last week, both boys now have an autism spectrum disorder diagnosis.

Is there closure for this family?  Did I have closure with the incidents of physical and mental abuse that happened to Dayton in our school system?  I don't think I'll ever forget what happened to my son, or the discrimination against my family.  I don't think this father will forget so easily either.  It is a pain that leaves scars no one else can see, but I assure you, they are there. With time and a good school and fantastic teachers who care, the pain slowly dissolves, and we begin to trust humanity again.  I've come to the point of peace with my children's diagnoses, yes they have more than one diagnosis, with the exception of my youngest two.  Four out of six children have more than one diagnosis and the fifth has the one diagnosis of ADHD.  My youngest babe is neurotypical.  We have high expectations of him, just don't tell him yet.




Consider yourselves hugged, especially those of you fighting for your children's and your own rights as the father in this story...

Lou

Friday, 29 November 2013

Feisty And Non Compliant - Can I Get A Behavior Plan Over Here???

Ah yes, t'is the season for IEP meetings.  Quick pop quiz...  What's an IEP meeting?  Come on, you can do it!  That's right, it's the individual education plan meeting.  All parents with special needs children get to have those twice a year.

Did you know there is a sales market geared at IEP's?  I'm serious.  Here's a couple of links for you to check out:
http://www.zazzle.ca/no_crying_in_iep_meetings_aprons-154740917622695277

This one is a little scary, but here you go:  http://www.beautifulmindsinc.com/video-right

http://hooverlaw.com/wordpress/?p=74

http://expertbeacon.com/successful-iep-meeting-requires-effective-parent-participation/#.UpltJMSkpRo

Love this picture I recently found about IEP's



If you've checked these out, you can understand why most parents come to these meetings prepared for battle.  We know what's waiting for us:  a cold, impersonal boardroom kind of place, with the school team on one side of the table, usually consisting of the educational assistant, teacher, principal, guidance counsellor and sometimes, if you're really lucky, the speech and language pathologist, physiotherapist and the special needs coordinator from the school division.  All these people are sitting at a table, together, right across from you and whomever you're lucky enough to have talked into coming to the meeting with you.  If you go alone, you sit alone.  It kind of feels like you're sitting rather than standing in front of a firing squad...   The feeling of judgement day is all around you.  The people across the table from you look down at you.  Uncomfortable?  Nooo...  A root canal is uncomfortable; this is a whole new level of discomfort my friend.  While the whole table agrees that there are delays in speech, language & communication, play and learning, no one seems to know how to help the child mainstream into the classroom in a way where he or she can learn and be a contributing member of the class.  So, since the self proclaimed professionals don't know how to help your child, they assure you that they are doing everything they humanly can and that you, as a parent... well... you  suck.  It is a discipline issue, that needs to be addressed at home, even though the behaviour generally only takes place at school.  So, the professionals now need to draft a behaviour plan, which in a nut shell, tells the parent 1) how to parent and 2) typically says that you will come and pick up your child early from school when there's a meltdown.

In the past, rather than go to these meetings alone, I called my CSS worker to come with me as well as Dayton's behavioural specialist.  Finally, I had asked a CFS worker to come join me in my fight for Dayton's rights at his school, as the three of us alone could not seem to get the school to understand that Dayton had a pervasive developmental disorder, along with ADHD, GDD and ODD, all contributing to how he relates with others, learns and understands the world in general to be.

This year is different.

We're in a new school division, and I am free to name it for you.  Seven Oaks School Division.

I prepared for the IEP meeting dressed to the hilt, red nails and all, ready to fight for my children and their rights.  Dayton's IEP came first.

There was no boardroom.  There was a small desk, three chairs, Dayton's guidance counsellor and his educational assistant, Mike and myself.  Even numbers...

"Dayton's had an amazing start to the new school year.  We're so impressed with how he's adjusted and how he's wanting to learn.  In fact, I've filed the negative notes from his past school in a different filing system, away from others, for my eyes only, as they do not describe the boy we have the pleasure of working with today..." said Dayton's guidance counsellor.  "We're actually shocked at how well he is reading, we weren't expecting him to read..."

Wow...  I sat on my hands, shamefully hiding my red nails.

I got to sit and listen to Dayton's educational assistant tell us how well Dayton works with her, and how yes, he does need constant guidance and supervision, as without her present, he figures he doesn't have to work, but still...  My baby is learning!!!  He's working hard!!!  No meltdowns as the staff nip it in the butt and are proactive!!!  They've gotten to know him and see trouble coming before it happens, stop it, and move on!  I left the meeting SMILING!

Next stop:  Amber's IEP meeting.

Friends, I was stunned.  As I walked into the room, we had a few more people on the other side of the table then we had at Dayton's IEP meeting:  Amber's teacher, her educational assistant, the speech & language pathologist, and someone from the school division.  On the table in front of us, they had Tim Horton's coffee and Timbits waiting for us!!!  Seriously!  No joke, this is a true story!  I've never been served anything during an IEP meeting other than "your son is feisty and non compliant, here's his IEP and behaviour plan, fix him, yourself and his father, you're wrong, we're right, you suck, now get out."  In fact, his old principal three years ago tried to tell me my son was a psychopath, etc...

I was in for another surprise.  The school staff sitting in front of Mike and myself were genuinely concerned about Amber and our took our fears of Amber's regression seriously.  They too noticed that she has been regressing, and had questions for us about how things were going at home, and what they could do to (wait for it, you're not going to believe it because I nearly fell off my chair when I heard them...) HELP!  The women sitting in front of us wanted to know how to help Amber!  They didn't criticize our parenting, they didn't blame us for her disability or accuse us of not disciplining our daughter.  They wanted to support us and praised us for everything we do for our children!

I quietly and as discreetly as I could, began to chip away at my nail polish under the table.

There is a reason the rear view mirror is very small in comparison to the huge windshield in front of me.  Where my children are headed is far more important than what we've left behind.  This school gets it.  And I am humbly grateful.

I left the school smiling so hard, my face hurt.  I've never left an IEP smiling before.  It always ended in tears and self loathing.



Consider yourselves hugged, especially those of you waiting for your turn in the dreaded IEP seat,

Lou