Wednesday, 18 May 2011

The Clouds have cleared...

So it's me again, Wendy.  It's been a little while since I did a guest blog and like my last one stated, I must have been fogged over from the clouds of hope. Don't worry folks, the clouds have left and I'm more confused about the "system" than ever.

First, I had my second "autism" meeting and it was good. The kids took SO well to each other and I was thrilled. Finally parents that get me, that understand. The saddest part was there was a little boy (not even 3) who appeared to be of "normal" and people would expect our children to be wild and crazy, yet this tiny little boy was attacking, punching, yelling, bashing heads with our kids. Where was his mom you ask? Sitting on her cell phone smiling. Yup. For all the ignorant ppl that give us moms dirty looks, and ask why we let our children out, excuse me? My "special" child behaves better than some of the "normal" children. So check yourself.

Okay onto the clouds clearing, sorry just really needed to get that out of my system. Okay so this is Nik's 3rd week at the new school/daycare. Maybe my hopes were too high? Or maybe I was just clouded by the thought that after fighting n crying he might actually get the help he deserves.

Well on the daycare front- The staff is amazing, he's integrated SO amazingly, he loves going, he's "comfy" as he calls it. Then yesterday I get the dreaded news. "Ms Thede, Nikolas is doing amazing, but we just wanted to let you know his 1-1 worker that he LOVES (they are allergy buddies) is leaving on May 27th. Don't worry though, although nik loves her we will be replacing her." ***WTF*****OMG***ARE YOU CRAZY*** Yes these are the thoughts that ran through my head. A child that doesn't warm up to everyone, is still in a transition phase, doesn't handle transition well but now your taking about his "safe"zone and replacing her? OMG. On their side, I do want to say they are amazing. I haven't felt this safe at a daycare in a LONG time. But seriously?

Onto the school front. Hmm where do I start. Maybe I should start by everyone says "no news is good news". Well I hear nothing from the school. So I assume it's all okay. Then 7:45am, I'm walking Nik to daycare and the resource teacher approaches me. Being without my morning coffee (slept in), and half asleep I'm bracing myself. She comes to tell me he's doing awesome. He understands his visual pictures up in his room, and he's understanding what's expected of him. he's doing awesome work with his EA which is shares with another non funded child. He knows every type of bird (it's spring month at school). I'm thinking, WOW this is awesome. So glad we moved, so worth the money and stress and everything. Then a zinger comes from left field. We're not putting anything in place for Grade 1. No funding app, no nothing. We are willing to hear what MATC has to say but we think Nik will be fine cause he's handled the last two weeks great. **OMG***ARE YOU FRICKEN KIDDING ME** SERIOUSLY?** Yes it appears we are back to where we were at the start of this school year, and 6 months ago, and a month ago. OMG. Now what?
Here's the other thing that she brings up to me. As some know Nikolas is a bubble child. If they made one, I would own it. He's allergic to EVERYTHING you can think of and stuff you can't. He has severe asthma, and sleep ap we also just found out he has a problem with a liner in his brain. Needless to say he's my worry kid. So anyways. Chronologically speaking, he's almost 6 (may 30th), mentally 3-4 yrs old depending on the day. According to the province of MANITOBA, although my child is special needs, and mentally not the same age as he is physically, he is required to carry, dose, and administer his own medication. He's a large child (some moms have been able to see that first hand) he needs an ADULT EPI. Now at daycare it's no problem to have the staff carry and give him his meds as needed. However at school, he is expected to carry, and determine when he needs and how much, then administer himself. I'm sorry but he's terrified of needles. Do you really think if he's having a reaction and has to decide between Arius and EPI, he's going to be able to make the right choice? Yes I understand he needs to learn, I'll give you that. I find it shocking that in daycare it's no questions asked, yet in School medical isn't a consideration for funding, because they are expected to do it themselves. Let me remind you, in September (first day of school), an older child stole Nikolas' EPI and shot it off in the air, but you want me to let my kid walk around with it?

I love the idea of public school, and I think daycare has made an amazing difference in my families life, however I just don't understand how it's through the same government yet SO different. I've said this before and I'll say it again. Just because my kid turned 5, his Autism didn't go away. This crap of losing everything at the age of 5, are you kidding me? This is the age they need help the most. Lots of transition to go through. With that being said I was shocked that I know a mom (original blogger herself), who's school will not hold a child back even though it's been requested by the parent, I get a letter sent home last night stating Nikolas is required to attend 5 weeks of summer school. Huhh? He's doing awesome, he's "so smart", he needs no help, but he is REQUIRED to attend Summer School?

I have yet to figure out who you have to speak to in the province to actually get answers but don't worry followers, I will figure it out. This system just doesn't make sense. At my mommy date this past weekend I asked the question, with the new diag. system/scale that states there is NO longer low and high, middle it's ALL Autism, what is the province and agencies going to do? Right now if your low functioning you do have A LOT more resources. Still not enough, and not always with trained staff but you do have some options. If your child is mild to high functioning, sorry your shit outta luck. There is some places that don't take high functioning children, so what will happen when it's all changed?The funding criteria allows for low functioning, but declines high functioning, Is the province going to re-write the entire Inclusion Policy? I doubt that, but don't worry. I will find the answers. People may not agree and that's fine, I've said this before and I will say it for the rest of my life.

As a mom I'm suppose to chase all the monsters away, fix every busted toy, and protect my child. When my child cuts his finger I put a band aid on it. Guess what folks? Shoppers Drug Mart is fresh out of Autism Band aids. As a mom I go through lows of feeling like I've failed. My job is to protect him and I just can't find the damn band aid. So while some of you dis-like my approach to things that's fine. We all do it different but I will find that band aid or die trying.

Until the next time. Get out enjoy the weather and as my partner in crime would say "Consider yourself hugged" or kicked depending who you


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