Day 311

Everyone knows something useful which others probably don’t. If you are an expert in your field, use that expertise to blog. Write down what you know most about or what you’re most passionate about. And blog it! Remember, knowledge which is not shared, is useless.Nicky (@rocksstar10 on Twitter)

It’s 8: 28 PM on day 311 of my journey towards independence and I’ve managed to brush my teeth – twice once before my mother left for work and once after she was in a hurry to leave for work and she didn’t give me time to brush my teeth properly the first time– watch TV, tweet about my Clean Water For All Campaign – no luck – feed myself chicken briyani for lunch, tweet about my campaign some more–still no luck :(– feed myself for whole-grain bread and avocado for dinner and brush my teeth once more.

Yesterday I was reading If a tragedy happens and nobody cries, is it still a tragedy? on Outrageous Fortune – a blog written by a mother of twins one of whom – Malachi – happens to have Cerebral Palsy – and as I read it I could not help but feel offended and hurt by the insinuations that her son was deficient in some way but this morning I woke up and realized that I should advise rather than criticize so I came up with a list of things that I wish someone had told my parents when I was diagnosed with Cerebral Palsy. Take a look

The Do’s and Do’s of Raising a Child with a “Disability”

• Start the necessary therapies e.g. physiotherapy, speech therapy and occupational therapy as early as possible so that it will be a part of your child’s lifestyle

• Read as much as you can about your child’s condition

• Get connected with other parents that are facing the same challenges that you are (you know the saying it takes a village to raise a child I think that is particularly true if you’re raising a child with a “disability”)

• Treat your child with a “disability” as you would any of your other children while keeping his/her limitations in mind (in my school days when I got a B in math my parents would pat me on the back and say good job whereas, if my sister got a B you wouldn’t hear the end of it and although I know they were just trying to be supportive the difference in the expectations that they had for my sister and the expectations they had for me really made me feel like they didn’t give a shit (excuse the vulgar language))

• Don’t be too quick to help your child rather push him/her to do things by himself/herself otherwise what’s going to happen to him/her when you’re gone because let’s face it no matter how young you are you will die before him/her (you hope!)

• You’re child sees himself/herself through your eyes so whatever you do, DO NOT pity him/her i.e. if you pity him/her he/she will pity himself/herself.

Are we connecting on Twitter? If not, say hi at

If you’ve given to my cause or you can’t give now, please help me by sharing my cause with others. You can tweet about it like my friend Stan Faryna. This is the tweet he uses: @Nisha360 is a brave, smart young woman trying to make a better world for us all. Please help her do an amazing thing.

Stan’s very sweet for saying so, but feel free to write what reflects you best.

Thanks to all my friends out there who are helping me make my dream come true: to make a better world for all of us!


5 responses to “Day 311

  1. Nisha

    I can not agree with you more about having children
    with a disability and the way you treat them. Our youngest
    son is 8 he will be 9 next month. But when he was 3 he couldn’t
    speak much and we would tell him if you want some thing you have
    to tell us what and when he did he get what he wanted plus praise and
    a hug and kiss for not giving up.

    I’m bless with the kids god gave me it has taught all of us lessons.
    Our older son who is 21 has friends with problems and he rather
    spend time with those friends than normal ones. I think that is so cool

    Hugs my friend
    Bonnie Suires

    • I think that that is so cool too and by the way I think your one of the best moms in the world 🙂 I consider myself luck to call you my friend YOU are an AMAZING woman!

  2. Thanks for the mention and the good advice!

    What I was railing against in that post was the whitewashing that sometimes happens from people trying to be too politically correct. All of those points you make represent very hard work and a lot of difficult decision making during a time when parents are already faced with huge and devastating news. I want credit for that. I don’t want people to act like my life and my children are just like theirs. There’s a difference between respecting difference and treating everyone the same.

    But I can definitely see how you would be upset at the many times in your life that you were treated differently for areas of your life that aren’t affected by CP (like math).

    • You’re welcome on both accounts and please NEVER EVER think that I think you’re a bad mother because nothing could be further from the truth I just wanted to make sure that Malachi got a running start in life and although I will never apologize for that I will apologize for the fact that I may have hurt you in the process.

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