Today 06-oct-2018, is world cerebral palsy day.I'm glad there is one day for cerebral pay awareness. There is a lot to share about raising one with cerebral palsy. There will be mixed emotions, lots of tears, overwhelming joy, big and small triumphs to celebrate and we learn to cope up with multiple demands and we learn to forgive people who is not even sorry for their actions.As a parent we believe nothing is more important than a child's comfort, happiness and independence.
I often talk about our blessings and how proud we are as a parents to raise a super hero. But there is lot of struggle and so many fears about the child's future.
I'm fully confident about his strength and determination. And he is the most charming boy ever. But the fear is all about acceptance, will he ever be accepted in secondary school by all his friends? Will he be able to achieve what he wants to do by overcoming societical pressures and fears? I have seen people loving my child unconditionally irrespective of the color,origin and background. At the same time, I have seen people avoiding him, although being same in every aspect. So life is unpredictable. I can't change the people or scoiety but I can only create awareness while preparing my boy for the future battles.
The question arises when I think about avoidance. What makes it different to avoid? Yes, he uses wheel chair but inside he is just like any other child. He has same emotions, same feelings Moreover,his life demands to accept what he can't do and to cherish what he can do at this little age. As a mother, for me he is just a kid I don't see any differences interms of his learnings, but yes I do come across many differences(even though I don't compare) and it breaks my heart to see, while his classmates attends sports clubs after school, we try to catch up appointments for eye checkups and regular check ups and therapies. Sometimes my child asks me will I be able to walk? Although it's heart breaking I'm very honest with him. I tell him the realistic expectations that he will use crutches and much more better independence he will getbafter surgery, only with hardwork. It's hard to explain 6 year old the realistic facts with so much positivity.
I fight with therapists for under estimating his potential and failing to providing suitable equipment for his needs.He proved them wrong many times. The only thing is to have a proper guidance in therapies is essential. Life is a constant battle. Everything is not spontaneous. Every thing should be pre palnned and well organised. Lots of planning requires to plan his weekends with therapies and outings/nature walks. Even dropping him in school is also an adventure, as transitions in and out of the car is getting difficult. Folding/unfolding whechair and placing in and out of the car is even more challenging. My back is sore all the time, which is when I feel I'm doing something extraordinary. Otherwise all other skills teaching him is such a joy.
Growth Spurts: Cerebral Palsy is not progressive, but it really tighten the child muscle If we don't give them enough therapy. Normally the muscles being stretched through out the day during child's activity and play time. In children with cerebral palsy, decreased control of muscles and increased muscle stiffness prevent muscles from moving through their full range of motion as easily or as often as other children. Children with cerebral palsy needs stretches and therapy to equate the bone growth with muscles.
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The question arises when I think about avoidance. What makes it different to avoid? Yes, he uses wheel chair but inside he is just like any other child. He has same emotions, same feelings Moreover,his life demands to accept what he can't do and to cherish what he can do at this little age. As a mother, for me he is just a kid I don't see any differences interms of his learnings, but yes I do come across many differences(even though I don't compare) and it breaks my heart to see, while his classmates attends sports clubs after school, we try to catch up appointments for eye checkups and regular check ups and therapies. Sometimes my child asks me will I be able to walk? Although it's heart breaking I'm very honest with him. I tell him the realistic expectations that he will use crutches and much more better independence he will getbafter surgery, only with hardwork. It's hard to explain 6 year old the realistic facts with so much positivity.
I fight with therapists for under estimating his potential and failing to providing suitable equipment for his needs.He proved them wrong many times. The only thing is to have a proper guidance in therapies is essential. Life is a constant battle. Everything is not spontaneous. Every thing should be pre palnned and well organised. Lots of planning requires to plan his weekends with therapies and outings/nature walks. Even dropping him in school is also an adventure, as transitions in and out of the car is getting difficult. Folding/unfolding whechair and placing in and out of the car is even more challenging. My back is sore all the time, which is when I feel I'm doing something extraordinary. Otherwise all other skills teaching him is such a joy.
Growth Spurts: Cerebral Palsy is not progressive, but it really tighten the child muscle If we don't give them enough therapy. Normally the muscles being stretched through out the day during child's activity and play time. In children with cerebral palsy, decreased control of muscles and increased muscle stiffness prevent muscles from moving through their full range of motion as easily or as often as other children. Children with cerebral palsy needs stretches and therapy to equate the bone growth with muscles.
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