10/01/2014

World CP Day 2014-- My advice for Max

This is the second year I have written something about World Cerebral Palsy Day. Last year I wrote about World CP Day. The need for more research, better oversight of doctors in the delivery room along with more explanations. I also tipped my hat to Ellen Seidman author of Love That Max, about  her 12-year-old son Max who has CP. Even though we haven't met yet, every time I read one of Ellen's posts I feel I know Max,He's also a fire buff and I have encouraged Ellen to get Max into patch collecting. Ellen encouraged parents to submit stories about their children. I decided to  jot down a few notes for Max as he gets older

  1.  Recognize other people have CP- while everyone is an individual there are commons themes that folks that only have CP can g et. Never compare yourself to other people but learn from their experiences  and share your experiences with other kids
  2. One minute you think you're on to of the world, the next minute it come crashing down CP has a funny way of getting in the way at the lousest time. Even when you're going out to dinner, try to eat at home, less food you eat less chance of it spilling on you
  3.  Not everyone is picking on you -  I still have a hard time telling the difference between a tease and sound advice.. It's an  art you need to master on your own
  4.  Sympathy sucks, understanding rocks Yeah this is another one that needs some good judgement on your part. Sympathy runs thin very fast and in the end yo u'll hate yourself for making people feel that way. Although when you're really frustrated  sympathy might make you  feel better, it will make you feel worse in the long run
  5.   Your parents are human- Yeah hard to believe sometimes with all the crap they go through to make your lifre easier, they still sometimes don;t get it. There will be times where you'll think they're horrible, but the really are always looking out for you.
  6.  Sabrina can be understanding and angry at you at the same time Trust me if your climb a 100ft mountain, she'll say you can climb 200 feet. If you upset her, she'll call you out on it. You'll always be her older brother but she'll always feel responsible for you. Speaking of siblings, some day she might make you an uncle.; It will be the coolest thing in the world
  7.  Some people just don't get it There will always be people who will treat you like a second class person, they're jerks. They don't have the capacity of caring anid so you shouldn't be bogged down thinking about them
  8. Stay away from  people who say they know what  you 're going through Pardon the langauge but that's pu re BS this is kind of an extention of #7 but I feel that people who say this are just trying to make you feel better. When this is the case just tell them you just need someone to- talk to
  9.  Never allow someone to label you If you are secure about who you are, nobody sho uld be able to  take that away from you.
  10. You' are your own best advocate Again this is one I haven't quit mastered myself, much to the dismay of my parents. You need to become vocal on your own behalf and vocal doesn't always mean speech.  You need to develop  your ways of communicating  NOW, you'll need them later

Please visit the World CP Day website for more information

1 comment:

Ellen Seidman said...

Justin, this is AMAZING advice—for Max and other kids with cerebral palsy, or any disability. Thank you so much!