Meg and I continue to travel to Melbourne most weeks to attend CPEC - Cerebral Palsy Education Centre. An amazing centre which offers therapy specialising in preschool kids with CP.
Their therapy is based on the premise that any child no matter how severe the disability can learn to communicate in some form and can also become an active participant in some way in their lives. Many people with severe disabilities very easily fall into the trap of becoming a passive participant where everything is done for them and as a result their quality of life is low because they need so much assistance to do anything.
In Meg's case, with her disability being so severe, she could very easily fall into the trap of being a passive participant, If we allow this to happen, in the future when she is too heavy to pick up and carry she will require either a hoist, or 2 people to assist in transferring her, in and out of bed, in and out of a wheelchair and on or off the toilet or into the car etc. Because of the time and effort involved in this it will mean she will be able to do less in her daily life and will probably spend more time just plonked in her chair in front of the telly.
It is why we work so hard now, while she is young to instil into our everyday lives Meg being as active in - transfers IE pushing through her legs to help stand up, getting in and out of her pusher, on and off the toilet, in and out of her feeding chair, in and out of bed etc. - sitting up IE using her hands, arms and body to assist her aid (me) to push up to sitting, There are many different ways in which Meg can help us to help her move around. Not only does it make the task easier for her carers but it is really good for her body and her brain to be learning these movement patterns and will as she gets older become instinctive. CPEC's philosophy is to instil this "therapy" into our daily lives, it means that tasks take a bit (or a lot) longer but it will mean the world to Meg when she is older. So apart for attending CPEC there is not "therapy time" for Meg our therapy is done every time she gets out of bed, every meal time when she had to lift up her hands to put the tray on her chair, every time she gets on or off the toilet etc.
The other side to CPEC is the extremely important communication angle. Right from when Meg began at CPEC when she was only 12 months old she has had a communication book, we have been encouraged, cajoled many times berated into instilling this into our every day lives.
CPEC does not believe in allowing their kids to sit in a corner and only get to communicate with their immediate family or by some one asking them questions, they very strongly believe in this and as a CPEC parent I also am expected to believe in this. It has not been easy, using the communication book is slow, it takes a long time to learn how and it is cumbersome to carry around. But like everything in Meg's life it is important, very important. Meg does not appear to have any cognitive issues; her disability seems only to effect her body. So, her ability to communicate will be the way she will stop herself from going stark raving mad! Could you imagine the frustration of having all the time in the world to think about things or at her age now, going on for 4 years old and all those questions she wants to ask," but why mummy why". Without her communication book and as of last week her dynavox, (her communication book now on computer with voice output) she will be totally trapped in her body and her mind. So CPEC offer us that, they push and pull us parents kicking and screaming into the understanding that communication is the key, if our kids can communicate then they can be active participants not only in their home, but in the world around them and in their community.
So this year at CPEC has seen a massive change in Meg. For the first 2 years of heading off down the Hume with a 4 hours drive in front of us or a long train journey with delays or cancellations, packing up the house, making sure the bins were out before we left (you get the drift it was HARD work!) We would arrive at 9am at CPEC, pull into the parking lot and before we had even pulled into a parking space Meg would see where we were and start crying, the crying would turn into screaming as we entered the building, and usually when the first therapist would say Hi a full blown tantrum would take place. This happened week in and week out for nearly 2 years, she would generally start to smile when after 3 hours we got to eat lunch or definitely when we were singing the goodbye song!
Happily or possibly luckily, I did not have a nervous breakdown in these 2 years and things have improved significantly in Meg's 3rd year at CPEC. The therapists at CPEC were fantastic, calm, understanding and patient. They got Meg's communication book out consistently and asked her what was wrong again and again and again. Until finally Meg got it, these people were here to help, they wanted to hear her and they were interested in what she had to say.
It has been a miraculous change in her this year. Now when I tell her we are off to CPEC she smiles, she laughs when she gets there and enjoys the sessions, now she can even get through an entire session without crying.
So this Post goes out to CPEC to say a big thank you for all your help, we most certainly would not be where we are today down this long road if we had not stuck it out.