Owen and Ben's Journey Through Autism

Owen and Ben's Journey Through Autism

Tuesday, September 18, 2012

and we keep warrior'in on, because it's our job.




Writing a few days back, we are battling what is the reality of being a Special Needs child in the school system, a lack of funding, cuts, sometimes just getting the short end of the stick.

After writing my emails to anyone I could think of: I got a wonderful response from our MPP of Niagara Falls, Kim Craitor, that I posted last week, and his phone number to call him and make a date to have a meeting in person. Then this week, I got a great response as well from our Mayor of Niagara Falls, Jim Diodati:

Vanessa,
Thanks for taking the time to write and share your story and situation. I know that there are difficulties experienced by so many these days with the cuts and cuts from the top down. I'm sorry to hear how you and your children are being affected.
I'll look into this a little further and see what sort of options or resources there are at the City's level and at the regional level.
Glad you also connected with Kim as he should have some insight on the funding from the provincial level for these services as well.
Best to you and your family,
Jim
 
Awesome.

Today was the meeting with Mr. Kim Craitor. Went something like this: I sweat ed. I drove like a drugged out senior citizen to his office on Montrose Rd, thinking the whole time if I am going to say the right thing, am I going to constantly talk and remember to breathe: in our world of being an Autism parent, this is a day we crave, to tell our story, to educate, and to fight for our children who can't fight for themselves.

We walk into a pleasant looking room, and his assistant comes in with us to take notes, writing down everything I am saying, taking names, my opinion, and most important the facts of what I was saying. In a brief form, here are the points I made:

-He wanted my background: so talked about my 3 children, 2 of which have Autism.
-He wanted to know more about IBI (Intensive Behavioural Intervention) the waitlist for 3 years, and the advantages Owen will have from it.
-the benefits of having 1:1 support in a school setting
-now with a regional preschool, the allotted hours are not based on the ratio of children as it was, everything has changed
-when Owen was in preschool, (only 2 years ago) he was allotted 1 day, the boy he was with also had 1 day, so they always had a Resource teacher with them, for their 2 afternoons a week,
-Compared to his brother, same age, same diagnosis, 4 children in his class have needs, and all 4 get one morning a week: shared.
-He asked me if I believe Autism is genetic? You all should know my answer: in our case, obviously, no vaccination BS here.
-Asked me what the benefit of a RT would be for Ben?: structure, routine, consistency, eyes on all the time, 1:1 attention and help with completion of tasks, help with communication, etc
-Asked me how Owen is doing now? was there a benefit to him having the RT before JK?: I took this chance to brag my face off about Owen, his communication, having an EA in JK, how he started preschool with constant meltdowns and tantrums- to how he finished, calm, collected, talking, toilet trained, and received his preschool diploma standing with his peers.
-I explained the process I went through last year battling the DSBN getting Owen and his peer an EA full day, when the board assessed him and deemed him being a health and safety risk. I informed Mr. Craitor I have been down this road before.
-My last point, and I saved it till last on purpose. If cuts keep being made, schools like Kids Kastle are going to have to start refusing children with special needs, it would not be fair to the child and parent that the child is not receiving the attention and constant supervision that is required, and not fair to the other "typical" parents and children, that their teacher has no help and is being constantly disrupted in class for a child that needs the 1:1 Support. This is going to be an issue in the future, more and more children are suffering from Autism (now 1 in 88 births), Fetal Alcohol, behavioural children, ADD, ADHD, Downs Syndrome, etc. Could you imagine me trying to sign Ben up for Preschool next year and he is refused because he has Autism and there is no support?  Not on my watch.

(this is the condensed version, I apologized for talking his ear off: he said he learned a lot) :)

What we decided was:

-Niagara Support Services (who is in charge of distributing the allotted hours per school) will be the first call.
-The Ministry of Child and Youth services will be next, as well as the region.

Things are in motion. So I drove like a madman to Kids Kastle School, to go in and tell Ben's teacher Sue. I was so excited to tell her all the news, that I am working my tail off to make things right like they used to be, and we hugged. I know that this is effecting so many people, and she is one of them: she wants to be able to do everything and give all the attention, but its too much for one person, way too much.

I felt like I did it today. I felt like I took on the world, and someone listened to me. Being a mother to a child with special needs, not only Autism, just a parent to a beautiful little person who can't speak for themselves: I felt like I did it for us. So much more often than not, parents in our situation have no clue where to start when they are faced with this: where their child is not getting the support they so deserve and require, but go with the flow because they don't know where to turn, who to turn too, they are lost.

I always thank my employment for how Ryan and I deal with the obstacles in our lives regarding the boys. I know you CAN fight, there is always someone to turn too, you can always find someone to listen to you, and more often than not, funding is taken away: but there is always someway to get it back. This is warrior mom status. This is the role that someone up above entrusted to us all as parents, we continue to fight the good fight, we communicate the feelings for our children's ultimate well being, we are given the strength that we don't always realize that is there: until you see your child in need, and my friends, last Wednesday Ben was in need, and I saw it.

Mr. Craitor is going to keep me posted, so you will be posted.

Keep fighting the good fight.

Vanessa Xox

2 comments:

  1. Very, very cool. Vanessa, you are inspiring others to advocate, and together the voices will be heard. Super work -and at the same time, you are trying to heal from surgery. Wow. I hope you can rest tonight! spot

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  2. Thank you Sara!! As you know, raising our voices to be heard is part of our life style. I know sometimes it can be difficult for people to find their voice, so I am hoping if they read my experience they may find it sooner.

    Recovery is hard, on some pain meds to help it along, taking it very easy tonight :)

    thanks for reading friend!

    Vanessa

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