Brainwave

Published December 1, 2011 by swanfreddie

The last 2 days we have been on our first trip to Brainwave.

When I originally rang up to enquire about it me & my partner were fairly skeptical…What could they do that our regular physio couldn’t? But I must say I have come away from their and i’m so pleased with what they have done for us!

We arrived on the Wednesday morning at 9.30am and when we entered the building I could instantly tell it was going to be good. On the board infront of us was Freddies name up in big silver letters. It may only have been a small touch but it’s things like that which make you feel welcome and I knew that the whole day would be about Freddie. They had great facilities, everything you could need to help you feel relaxed.
They started the day with going over the past 18 months of Freddies life…Not something I like to talk about much as it’s times like that when it hits you how hard its been but I knew that by telling them this they could help us. They then looked at what he could and couldn’t do and took the time to discuss why he wasn’t doing what he should be. They then went off and made a plan based around Freddie for us to do at home everyday with him. They also plotted where he was developmentally up to on a graph. It was only 3-6 months. I felt a bit sick to think he was so behind but from looking at this plan I could see how much it would help him. We spent the afternoon trying out the exercise plan with Freddie. The exercises were going to take around 20-30 minutes and they all seemed great and I could see how much potential it had in helping Freddie. Most of the exercises were to try and get him to use the trunk of his body and use his back muscles. They were also keen for him to  go onto his tummy…something Freddie has never liked. He screamed and cried through alot of the plan and it seemed to stress him out and trigger off his epilepsy. To try and make it easier for him they split the plan up into 3 x 10 minute exercises and found different ways to distract him…letting him pat a balloon seem to calm him down a bit. To end the day on a high we spent some time in their fab sensory room. Freddie loved their mirrors and bubble lamp!
After such an amazing day I went home and all them highs and positive feelings stopped. I had so much running through my head….Was it my fault Freddie was like this?….Was I letting him down?… Why didn’t I think to do exercises like this with him before? Probably quite a normal feeling for any parent with a disabled child.
We went back the following day and they camcorded all the plan and put in onto a dvd and I had a go at doing all the exercises with Freddie. It was HARD work. He is so strong and put up such a fight and it was so hard to hear him crying and screaming and getting so worked up over a simple exercise.   But I know that in order to help Freddie to walk I need to put him through this. To end the day we went back in the sensory room for some fun!

Going to Brainwave was an amazing experience. It is hard to watch your child not be able to do something that would come naturally to a ‘normal’ child. With my daughter she sat up unaided after a few weeks of support, she stood independently with ease, she played with toys and laughed naturally whereas with Freddie simple things like twisting his hips, touching toys across his midline, laying on his tummy and sitting properly using his back muscles are all so hard for Freddie to do and understand. But the help and support they offer you is great. Something you would never get from the NHS. 2 days of 1:1 intensive therapy was definatly worth the money they charge. And I can now see that no it’s not my fault Freddie so far behind, no i’m not letting him down and the reason I never did these exercise before is because they are not natural things to do with a child and without guidance and support i would never know what to do.

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