Winnipeg's Children's Coalition - Help For Our Children With Autism?

The first time I published this post, I had 2 extremely negative emails from the person I spoke with at the Children's Coalition, telling me that I have no respect for privacy or regard for the "process."  I took the post off the blog, apologized to her, told her I am willing to work with her, but sadly she sent me another negative email, telling me she will not work with me as I mentioned the Children's Coalition (without mentioning her name) on facebook, and how disappointed I am with her unprofessional behavior of sending me the "hate emails."  I received her third and final email as I was in the emergency room with my son, the right side of his face covered in blood while playing at school...  A complete nightmare.  I was so angry, I unfortunately became quite unprofessional myself, telling her off...  I'm not proud of my words to her, but she really caught me at a super bad time...  Here's her third and final email (so she promises):

I cannot work with you.  Too bad but you obviously have no respect for me and the work that I do. 



This is what was written on the Autism Winnipeg Facebook page:

Ljubica Lovrin Mary, I think that the school staff is not ABLE. I'm not opposed to inclusion, let me make that clear, but I think we missed a fundamental step towards inclusion, which is autism training for the schools. I've been emailing the premier, calling my MLA, and both forwarded me to MB education, who as you've said may make suggestions, but the schools do not have to apply these changes. I've even contacted the Children's Coalition group, blogged about my experience and got a hate mail from the woman I spoke to, actually two hate emails... Rather disturbing, her claiming I have no respect for "privacy" because I posted her contact info, which she said in the same sentence is publicly available... I ended up taking the post off the blog... She's under the impression Dayton's issues in the education system is an isolated incident?! No body seems concerned about autism training in the education system, and I have a major problem with that. How on earth are they supposed to teach our children and keep them safe when they don't seem to understand that while a child with a form of autism can speak, may also have sensory issues, verbal expression issues, etc... It blows my mind!!! I'm just tired of being sent on all these wild goose chases! I've actually contacted CJOB and they're interested in interviewing me, after the flood crisis. Wendy Thede, a member of this group is willing to come with me to share her experiences with her son's education experience. It's sad that each parent has to fight for their child's education alone. I think it's time we banded together and spoke as one voice, loud and clear: Autism training is a must for school staff!!! It not only empowers the child, but the teachers as well. Thing would run much smoother with some support and understanding, instead of school staff believing at the root of a child's behavior is bad parenting.

And then my not so classy response back to her:

No problem! I have bigger and better problems to deal with. Your wonderful school system has landed my son in the emergency room, that's where I am right now! The whole right side of his face is covered in blood, thanks to the wonderfully trained autism staff our government has provided us with. Your delusional thought of our system is DEAD WRONG lady! I have absolutely no respect for someone who lies about how much they care about our children. You can be assured if Dayton loses the sight of his right eye, I will be contacting a lawyer and tell the world how much you've helped me! Congratulations! Your work has definitely changed our life! When I get home, I will be contacting the media. I will not be silenced!

Sent from my BlackBerry® smartphone on the MTS High Speed Mobility Network

Like I said, I'm not proud of myself.  But there's only so much a mom can take in the middle of an emergency room...  I pride myself on being honest about my life to all of you, so I return the post to you...  So here's the original post, minus the "woman's" name.  If you really want to know who I spoke with, shoot me an email.


In talking to Brent Epp at Manitoba Education, and telling him how frustrating it is for me as a parent not to have choices when it comes to Dayton's education, he asked me if I would be willing to speak to the Children's Coalition.  He thought they may be helpful in my plight for children on the autism spectrum to have educators skilled to successfully include them in the classroom.  "Sure, I'll talk to them.  What have I got to lose?"

Here's our email correspondence before our meeting yesterday morning:

Hi Lou;  I received a message from Brent Epp

I trust that this provides you with a bit of a background and welcome your questions if you would like to know more.  Bye for now,  ---- The Children’s Coalition


Hi----,


I'm not sure we view inclusion in the same fashion...  Let me clarify my view.


I love the "theory" of inclusion and fully believe that my son Dayton can be integrated or mainstreamed in public school.  However...  It seems the schools either choose not to genuinely include our children or they don't have the skills to include them.  I've been fighting an up hill battle for the last 4 years, and frankly, I'm tired of it. 


My son has PDD-NOS, so we're talking high functioning autism.  He's also been diagnosed with ADHD, ODD and global delays.  He spends more time in the hallway than he does in the classroom. 


I think the two of us have spoken last year if I'm not mistaken...


Feel free to give me a call, and we can discuss further.  I'm very interested in making inclusion work, providing that it is genuine inclusion.




Thanks,


Lou


Hi Lou;  The situation for you son does not sound very appropriate or inclusive, as you say.  Have you spoken with the student services administrator for your school division to discuss this?  I might also suggest getting in touch with Joanna Blais at Manitoba Education.  You have already spoken with Brent Epp so perhaps you have already gone this route.  Which school and school division are you in?  I would welcome the opportunity for a discussion but prefer face to face if that is OK with you.  Let me know if your schedule would permit this.  Thanks,----


I am on medical leave due to developing irritable bowel syndrome due to the stress from experiencing our wonderful school system. I am available most of the time, with the exception of this Friday morning and next Monday afternoon. Give me a call and we can arrange an appointment to see each other.


Lou
Sent from my BlackBerry® smartphone on the MTS High Speed Mobility Network



Deja vu...been there and done that.  This too shall pass...a good mantra to keep in mind as you go along.  How does Monday at 10 am sound?  We could meet at 120 Maryland in the CL-MB office (main floor opposite the board room). ----


That sounds great -----. I will see you at 10 am Monday April 9th.

I look forward to seeing you then,

Lou
Sent from my BlackBerry® smartphone on the MTS High Speed Mobility Network


I should have known it wasn't going to be this easy...
"Hi Lou?  This is %$^&$ school calling.  Dayton doesn't seem to be feeling well this morning."
"All right, I will be there in 5 minutes..."

Hi ----,

I have to pick up Dayton from school, so I may run a little late... Hope you get the message before ten :(

Lou
Sent from my BlackBerry® smartphone on the MTS High Speed Mobility Network



I wish she had given me her phone number!!!  Maybe Marlene Gregory from Manitoba Education warned her before she made the first email contact.  Would have been super helpful for me to have her number at this time...  Dayton was sick, and expected me to pick him up and take him home.  Finding out we were on our way to a meeting sent him into a melt down, which fortunately I calmed down before entering her office.  Non the less, it would have been nice to be able to have the option to reschedule...



Here's her email to me after our "meeting:"

Potoula Locken from the St. James School Division and really have a heart to heart on how things have been going with Dayton, what you concerns are and what you would like to see for him in the future.  Be specific re: the numerous suspensions, the incident report, his perceived threatening behaviour.  Explain your perceptions of how the school is dealing with Dayton’s personality and how you are able to deal with it at home.  Bring along the report from MATC with their suggested strategies.  Then ask Potoula how St. James supports students with needs like Dayton’s.  Is there a behavioural support team who can consult with his school, teachers, principal?  What kind of supports are there within the school division for students with autism and global development delay.

In short, you want to work with her to figure out what appropriate education looks like for Dayton and where that can happen. 

It would probably help if you wrote down your comments and questions to keep the conversation focussed so that you leave with answers as opposed to more questions.  If you would like someone to come along, I would be willing, or you might consider a close friend, or someone who knows Dayton and has worked effectively with him. 

This is really a fact-finding mission for you and should help you get a clearer idea of how Dayton can be supported to have a successful educational experience at school.

Let me know how things go. ----

Yes, me thinks the lady didn't hear a word I said...  She must not have heard me when I told her how Dayton's been to three different school divisions and that the problem is staff understanding or even acknowledging that autism is a neurological disorder, not a choice.  She also seem to have missed my point of how this isn't just about Dayton, but all of our children!!!  Now, I understand that people have worked very, very hard in making "inclusion" a policy in this province in 2004/2005.  I get it.  We don't want go 'regress' to the way things used to be where our children were segregated.  I totally get it.  Who wants that for their child?  But I think we've missed an enormous step here...  the training of teachers, educational assistants, guidance counselors, resource teachers and principals in HOW TO INCLUDE  OUR KIDDOS!!!  Successful inclusion is one in where the staff understand the difference between a child being difficult or misbehaving and a child having sensory issues and is just not able to cope.  Also, common sense would be a nice touch.  We need educating staff with COMMON SENSE!!! 

It almost seems as though I may have to start a 'grass roots movement' so to speak.  Apparently my voice is just not loud enough.  I ruffle feathers everywhere I go, and seem to piss people off left, right and center, but it's just not enough!  The people who seem to understand me when I say that at the root of our education problem for our kiddos is under qualified staff get seriously offended and therefore won't do anything about it.  These people I speak of is the school division of course.  And then there's the ones who could potentially do something (like the premier's office), but freaking well miss the boat, possibly because I'm one lone parent, who will get tired of the fight and just disappear as long as 'we' continue ignoring her and pretend we misunderstand her.  They understand me all right, they just choose to ignore one lone parent's voice.  Manitoba parents, I think I may be needing your help.  I can't seem to do this alone, so if you feel your child is not being included or taught or cared for, discriminated against, is not understood, etc. email me at autism.diva.help@gmail.com. 

My view is whatever option works best for our children is the direction to go.  Contrary to some belief, I am not against inclusion, I just want genuine inclusion, not cosmetic.  With your email, include your views on your child's education.  We don't all have to agree on everything, but I see over 2,700 views on this blog since I started it on February 28th, so I'm just gonna say there's enough of you out there that are unhappy with your child's treatment or education.  Let's start our own coalition!  A coalition where a parent has a CHOICE in their children`s education.  Where division boarders are not an issue, and we can support our children`s education with staff that is qualified to include them in our public schools.  Or perhaps we need a school designed for our children?  I'm not sure what the answer is, but I WOULD APPRECIATE SOME FEED BACK.  Please email me and let me know your thoughts, and also email me with things you would like to be talked about on this blog.  If you would like to share a story, email it to me and I'll be more than happy to post them on the blog.

I would like to extend this invitation not just to parents, but to educational assistants out there, teachers, grandparents, friends of parents who are raising a child with autism, or other diagnoses such as ADHD, global delays, SPD, etc.  Come and join me on this crazy road trip, one that begins with a drive to the schools, school divisions and government and ends with a detour through legislation to make a change.  This adventure will take you deep into the beautiful minds of our children and deposit you safely back at your original destination.  Please remember to fasten your seat belt and hold on because otherwise you might get thrown into a serious state - and that's seldom a fun place to be.  Advocate with me!  In your email, include an organizational name you'd like for us to be known as.  LET'S DO THIS!

Even though the Children's Coalition information is PUBLICLY AVAILABLE, here's her information to shorten your search.


Community Living - Manitoba
#6-120 Maryland Street
Winnipeg, MB
R3G 1L1
Phone:  786-1607

organization's email:  aclmb@alcmb.ca
website:  www.aclmb.ca


Consider yourselves hugged,

Lou