Jan 16, 2010

A jolt back to reality

EJ has been so good lately. He's been calm. He's not melting down. He's not screaming, crying, ranting, or whatnot very much at all anymore. His therapy seems to be working - if the environment is right.

Today my nephew had his 3rd birthday party. Balloons everywhere. Streamers everywhere. A great spread of food - because my SIL is amazing at catering - and the most coolest Wiggles cake I have ever seen. It was the Big Red Car (toot toot chugga chugga big red car - you can thank me later for putting that in your head!) - but missing a wheel because my niece helped herself to one of them. *giggle* Anyway... there was lots of kids everywhere - and adults. I watched EJ closely, watching for physical signs that he wasn't coping. He seemed to do really well. He handled the singing, he handled the games - then towards the end, he sat down and started to scream at me over the smallest thing. It was time to go.

I grabbed EJ, who started to fight with me - not as much as usual, but still trying to get me to let go of him. Whining. Whinging. Starting to rant. It's a prelude to a meltdown. I had to get him out of there before he really let loose! Deb (SIL)saw what was happening and scooped up Milly and took her out to the car while I hauled EJ to the car. I buckled him up - took a deep breath and left the party. Before I even got into second gear, he let loose! He cried. He screamed. He couldn't be reasoned with or consoled. He whinged. he whined. He argued. He ranted. He raved. The vein in his neck was bulging. When we got home I had to put him to bed. I laid him down, and his body ticked and twitched uncontrollably.

I massaged him in his dark bedroom, trying to soothe him, trying to keep my voice quiet and gentle. His big eyes watched me, taking in my words. His eyes always get me when he's like this. They look scared, they seem to scream "What is happening to me?" They are always so huge and bright.

This is reality. This is how he is in life. He may be ok at home where it's safe, but he isn't ready for people.

I got a call from his Occ Therapist yesterday - turns out she isn't going to be able to help him. She can only help him keep calm - but not actually help him calm himself. I have to get a private OT who specialises in SPD. Since we were rejected for help from Centerlink (though the speechie thinks it's a mistake and wants to try again, with the help from the psychologist) paying for private therapy is going to be very hard. The OT is going to apply for some funding for me, and that will help with costs. I'm not pinning my hopes on it though. But I'm glad that his speechie and OT are proactive as well in helping me in every way possible!

So that's how it is, this 16th January 2010. We have come so far - yet have so far to go. Let's keep going my son, let's do this journey together. I want you to be well and happy, and I will do everything in my power to make it so.


daph-a-dills said...

Poor little man :( I do know how hard such a child is. Very much reminded me of an outing many years ago with Lach and the aftermath that followed. Just when you see improvements...BANG!
I'll be praying for your little man, and for you guys too :)

tinkster said...

hello lovely

Wanted to let you know you've received an award over here


Did this blog, but they all rock!

Cos you are cool!