Sunday, August 7, 2011

Directly from the heart of a Mom with special needs child

Thank you Blogadda for helping the message reach a wider audience. After the amazing response, I have hope that we will see some change in near future. 

I was going through some pictures of our USA trip. To my utter shock, I found a lot of difference between the expressions of Farheena when she was in USA and now when she is in India.  I rubbished it off thinking it was all in my imagination. Without mentioning anything about what I felt, I showed her pictures to few of our friends and they said the same thing. They say she was a different girl in those pictures.

I feel sad about the fact that she walked around happily in the Wal-Mart, Publix and other malls without caring as to who is looking at her. Often, she welcomed strangers with a ‘hi’  and they readily waved back a big ‘HI’ to her, which at times was leading to quite some communication with Paula as a mediator. No one treated her as a special needs girl there; she was just a special girl enjoying all the love and attention.

 Back in India, most of the time Farheena is pushed into silence by people asking what she is saying over and over again, or discussing what is wrong with her without even realizing they are hurting her emotionally. They ask questions just because they have to satisfy their curiosity. They need not bother, as they very well know that they cannot help her in anyway. At least they could allow her to be herself.

Once while shopping for a school bag for Farheena, a person tried to act silly to see how she responds. Seeing my shocked look the senior person said that they have a similar child (that is unbelievable, Farheena is quite unique) in their home who hits back and he was checking Farheena’s response. Farheena coolly asked me whether the person was mad. I conveyed her message loud enough for everyone to hear.

The life of the differently able people would be much better if people read this list and improved their behavior.

  • 1.     Avoid building a flight of stairs up to your front door. My daughter goes through so much of extra effort everyday to enter our home. I hope the concerned person is listening.
  • 2.     Tell a lesser gifted person that they are better off dead or ask stupid questions like ‘Why did God do this to you?’ If God has done this then, he should be having the answer. It is said that people meet God after death. Please try that route. The special needs people may not highly benefit the society but then they mean no harm to anyone either. Why aren’t those questions posed to the harmful people in our society?
  • 3.     Remind special needs child about their special schools and mention about how unfortunate the children going to those schools are.
  • 4.     Avoid talking directly to the challenged child, but talk about them to someone nearby.
  • 5.     Always ask what is wrong with the child and how did it happen blah blah blah… Why do you need to know about the details? Can you help in anyway?
  • 6.     Don’t tell the parents or special people themselves that they have to find a solution to their condition no matter how much money it will cost. Do they actually need to hear this from others?
  • 7.     Introduce a challenged person to someone as the one suffering from such and such condition and portray them as victims of curse. At times people ask about Farheena as though they have heard about her condition already and she realizes that people discuss her. No. She is not happy about this.
  • 8.     You need not patronize them either. Treat them as normal people because they are normal. Find the definition of abnormal in a good dictionary and know what it is.
  • 9.     One smart quote says that “Only two things are infinite, the universe and human stupidity, and I’m not sure about the former”. I am sure about the truth in that quote after listening to people who have complained that special needs people take so much from the society and relatives giving back nothing in return. Once a lady told me not feed Farheena much, because if she got heavy it would be tough for me to handle her. It was a time when I used to carry her around.
  • 10.  What is the need to proudly flash your knowledge in front of the special needs people about their conditions? Many people confuse mental illness, mental retardation, and other such ailments but never try to keep quite on the issues.
  • 11.  Complain that people with challenging behaviour are just naughty or blame the parents for not teaching proper behaviour to their children. It is not easy to be a parent to ADHD children. I may not have personal experience, but have closely watched the struggle of the mothers with hyper active children.
  • 12.  There is no need for every person under the sun to know personal details about anyone and that includes differently able people.
  • 13.  When they achieve something it is through hard work and not by luck. Avoid saying you were lucky to achieve that.
  • 14.  Show exaggerated sympathies along with the typical tongue clicking and feel great about yourself… It is not helping anyone people. Keep those sympathies for yourself.
  • 15.  Resist asking stupid questions like “Does she eat?” God! How do you think she is surviving?
  • 16.  They have emotions and feelings, may be stronger than what we realize. My daughter doesn’t talk, but that doesn’t mean she cannot think. At times she has come out with amazing comments about people who ask silly questions in front of her.
  • 17.  Argue in front of the concerned child whether the money being spent on treating them is really worth or not.
  • 18.  Don’t say they don’t have to struggle with studies and homework, how lucky they are. Think over it in silence once again.
  • 19.  Complain how easy life is when your Mom is doing everything for you.
  • 20.  Don’t bring in God into the issue and remind the people that may be they are being punished for their past sins.
  • 21.  I don’t want to hear about the good karma I am earning by taking care of my daughter. To hell with your heaven people.  I don’t give a damn about that. All that matters to me is my daughter.
        You can add more to list. Kindly share your experience or knowledge with me to add to this blog.. and I will as it comes to my mind. 
Words heal and words hurt. Use your words wisely.
Good morning Farheena says Pepper
Party time and fun

Cannot believe she is the same girl who freaks out at the sight of the dogs

Quick course in photography by Sandy

Judy taking care of Farheena when Maa and Rayyan were
off to meet Rocky statue

Farheena loved Bob and thinks of him so often 

Traveling with Judy

Having fun on beach with cousins

All decked up but the look is kinda brooding

Physiotherapist Ric.. amazing lady

Hi Maa..

Do I look like princess???

What is going on in her mind? I wonder....

Farheena and her friends.. her art displayed on wall

The smile has some hidden message

Farheena's first baby ,, Pooh
At Manasa waterpark.. where is the



Rayyan Lost in Laptop

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