Nate has conked out on his ventilator. Hoping he has a decent night for the sake of the people in the hotel rooms either side of us. Michael has prepared the staff that they may get a few complaints....
So. We set off at 6am. Nate was full of beans in the car but promptly fell asleep when we arrived at Brainwave in Warrington just after 9am. This actually worked out ok as we spent about an hr going over Nate's birth and history since then. Then the assessment began. The Physios examined Nate and made notes on all of his joints, muscles, and tone. Then they tried Nate on different pieces of equipment and in different positions- watching how he interacted and responded. This was a long tiring hour and a half for Nate, but he did really well and was quite animated until the last 15mins.
After a break for lunch the Physio came armed with a basic therapy plan for tweaking and some more ideas. We went through the plan, and tried some more techniques. This was then followed by time in the sensory room. Nate managed to hit a switch with purpose to turn the bubble tube on several times. He spent some time on wedges, and then discovered the interactive floor. Words cannot describe how much he loved this special floor. On the piano setting he was moving his arms and legs to hit the keys, he stilled and followed the gems on a different setting, and watched the fish.
Day 2
We have made it home armed with equipment provided by Brainwave.
Anyway, day 2 consisted of tweaking the programme and filming all the exercises for the DVD. Nate did actually sleep well the night before so was quite awake and interested for well over an hour and then started to object. Then wee'd all over his Lycra suit which wasn't particularly helpful! He had more time in the sensory room after lunch but we could tell he was worn out. We had achieved everything that was needed so were free to go with a return date in 6 months for a reassessment.
What stood out was the wealth of experience exhibited by the staff, particularly with complicated little monkeys like Nate. The programme they produced isn't ground breaking. It isn't supposed to be. But what we got was a comprehensive personalised plan which targets all of Nate's issues- sensory, muscle tone and vision in a coordinated way. This is totally different from anything he has accessed in the community. In addition all exercises and positioning are explained in detail and specifically for him and you have time to practise each part of the programme and become accustomed to it.
We aren't expecting dramatic change in Nate. We went with the aim of getting a thorough therapy plan, a different point of view on Nate. Community physios are overworked and are responsible for too many children. Their time has to be spread too far. Our trip to Brainwave allowed Nate precious time with a Physio and the resources needed to do a programme built around Nate.
I feel I know what I'm doing with him a bit better now. I've said previously that our complex children don't come with an instruction manual and often you feel you could bloody well do with one. It's a steep learning curve that keeps on curving....
I spent the first year and a bit in and out of hospital with Nate, trying to keep him alive. Trying to fight for him. The year after that was fighting for the family. For somewhere to live. Then it was fighting for school. The right school. A safe school that could cater for VI and complex health needs and PMLD. Brainwave? Well brainwave is what I wish I could have been doing with him since day one. Not an instruction manual, more like one of those recipes you get and add to a file ( a Nate file if you will). A file that should tell me all about Nate. All about how to nurture him. How to help him reach his potential, whatever that may be.
In a way it's all a bit selfish helping diminish the guilt I feel most days about quite frankly being out of my depth.
Do you know I think you've described perfectly wha Brainwave meant to me: in the absence of anything else, they provided some sort of an instruction manual, which all the other therapists had failed to do up until that point, hope the programme works out for you x
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