Friday, 30 June 2017

FFS Friday - Defeated

I'm finding it really difficult dealing with Chai's Sensory Processing Disorder. Between sorting out his therapy, making sure the he's being treated fairly at school, trying to figure out what is a sensory issue and what's him being a little mischief, refereeing between him and Tiger and trying to explain to Tiger that Chai isn't being naughty, it's been challenging. To make things worse, for the last month Chai's behaviour has been over the top.

He's been totally off the rails and I have struggled a lot. It's taking me around three hours to calm him down after school each afternoon, he's getting in to trouble at school, he's been a mischief at home, he's back to cling factor ten and panics if I'm out of his line of sight. Turns out the reason for all of this is because when Tigers parents were here four weeks ago Tiger and I went out on our own for two and a half hours whilst his parents looked after the boys. Both boys had a great time, they were home with the grandparents, they did some gardening, played a lot and when we got home they both said they didn't even miss us. We were thrilled. Since having Chai six years ago we've been out alone no more than five times. Five times in six years. 

After things went so well with the grandparents I was excitedly thinking that I might actually get to feel like an adult and spend some time alone with my husband every now and again. When the OT told me that she thinks that caused Chai's crazy behaviour I felt defeated. I know he's struggling and I know he can't help it, but what about me? Who's going to help me when I have a child that can't be away from me? When do I get to be an adult, have a break, do something just for me? How long will I have to deal with this? How long can I deal with this? How do I stop this breaking me and my marriage?

I'm putting a great deal of effort in to fighting for Chai. I'm reading books, meeting with the school regularly, seeing an OT, speaking with Chai's teacher, emailing his teacher, doing exercises with him for at least an hour a day, taking him for alternative therapies that are said to help and doing everything that I can.

How do parents of special needs children cope? How do they manage to be there tirelessly, day in and day out, without any reprieve?

My one glimmer of hope for my sanity, the thought of having a few hours with my husband every couple of months, has now been taken away, because if I'm given a choice of dealing with Chai's current crazy behaviour or having a few hours with my husband, the few hours will lose every time.  A few hours sanity isn't worth the four weeks of hell that we've had and are still having. Four or more weeks misery for a few hours fun isn't worth it.

All hope is not lost though. We can still have time together, it'll just have to be when Chai is at school. That's do-able and just as good as going out on the weekend. 

Another thing I'm very concerned about it school. Going to school makes Chai's behaviour so much worse. Last time we saw the OT she commented on how much happier and more settled Chai was. It was because he'd had the day off school. Surely putting him through the stress of school isn't healthy? My BFF says I have no choice as I'd go crazy having him at home all day, but what is it doing to him? He's a different child when he's not at school.  

If he wasn't so social I'd take him out of school, but he's such a social child that he wouldn't cope.

I had a meeting with Chai's teacher, the deputy principal and his OT last week to discuss what can be done for Chai and how to handle his behaviour. It's early days yet but so far he's been a lot happier at school. Fingers crossed it stays that way.

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