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.

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