From Marianne's blog

Dear School Personnel, Community Members, Teachers, Parents and Neighbors
Posted by Marianne .

To Whom it May Concern,

I am the parent of a special needs child. I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me.

Please do not pass judgement of me without knowing why I did not attend the school PTA breakfasts or community picnics. Please take a few minutes to understand why I did not take you up on your offer to have lunch or grab a cup of coffee. Although we see each other in the supermarket or at school functions, I don’t think you really ever knew me, actually, I can guarantee that you did not know me because just as my child was different, so was I.

I was in survival mode to keep my family in tact and to give my child the best quality of life possible.

I was presented with parental decisions that have torn me apart and kept me up more nights than I can possibly remember.

I had spent most days of the week at therapy and doctors appointments and most nights up researching treatments and medication options.

I was forced into isolation at times due to the stigma and misconceptions that are epidemic in our society.

I became proficient at prioritizing my life and learning to let the little things go, to look at others with compassion instead of tabloid material and to turn a blind eye to the stares or ignorant comments.

I did the best I could.

I survived.

I am one of the lucky ones, my child has blossomed and has exceeded all our expectations.

I have now become strong, I have become confident and I have become a fierce advocate for parents of special needs children. The growth did not come without much pain and many tears but it came.

So I ask you, please



The next time you see a parent struggling with a raging child, a child terrified to go into school, a child making odd movements or sounds, a child that seems to be in a world of their own… .Be kind. Give a smile of recognition for what that parent is going through. Ask if there is anything you can do to help, give them a pat on the hand or offer for them to go ahead of you on line.

The next time you have a birthday party for your child remember that their child has a hard time with a lot of sensory issues and social situations. Please send their child that invitation and know that more times than not they will not be able to attend but appreciate being included. Understand that in order for their child to go to the party they may need to stay for a little while and please make them feel welcome. When they let you know that their child cannot make the party consider inviting that child for a one on one playdate or an outing at the park.

The next time you are grading homework papers please understand that their child struggles, some with learning disabilities others with the exhaustion of their disorders or the obsession with perfectionism. The Perfectionism is not necessarily to have the answers right but to have it “feel” right for them. They have spent hours doing what most can do in ten minutes. A paper returned with red circles and comments only hurts a child’s self esteem and causes school anxiety. Please understand that when they see the school come up on their caller ID their hearts sink, remember to tell them about all the gains their children are making as well as their deficits. Take a minute before that call and know that they appreciate all you do and want a collaborative relationship in their child’s education.

The next time you are in the teachers lounge, please do not discuss their child. Please do not make negative comments about their parenting or their child’s behavior, it gets back to them and it gets back to other parents in their community.

The next time you pass the cafeteria and see their child sitting alone please consider inviting that child to eat lunch in your classroom and be your helper that period. Consider working with a guidance counselor to set up a lunch buddy group in a different area.

The next time they are at the CSE meeting planning their chid’s IEP know that they are educated, informed and confident knowing special education law. Know that they have found the courage to stand up to conformity and will explore every option to give their child the differentiated educated that will show their gifts and not just their disabilities. Understand that educating a child with special needs is one of the most difficult tasks a parent can face, know that the last thing they want is an adversarial relationship. Please show them the same respect they show you.

The next time you are creating an educational plan please take into consideration that their child may have specific interests or obsessions. Foster those interests, instead of taking away that art class for a resource class consider adding an art class instead. Think outside the box, these parents do.

The next time you see that child in a wheelchair unable to speak or control their movements, don’t stare, don’t look away, say hello. Do not assume that because this child is nonverbal that they are not intelligent or do not understand the awkwardness that you feel. Take a moment out of your day to show kindness, support a parent enduring incredible pain and just give them a smile.

The next time your child comes home telling you how Johnny or Susie is so weird, take the time to teach about differences. Take the time to talk about compassion, acceptance and special needs. Please remember that your child learns from you. Be a role model, mirror respect and discourage gossip.

The next time you hear a comment about how out of style these kids are, educate about tactile sensitivities and the fact that these kids cannot tolerate many textures and fits. Imagine what it would feel like to have sandpaper in your stilettos or tight elastic holding on your tie.

The next time you see an out of control child do not assume it is bad parenting. Understand that many of these disorders have an organic basis, are biological and are real illnesses. When you hear the words mental illness, take out the “mental” and remember ”illness”.

Know that it is this generation that can stomp the stigma and create a world of acceptance.

The next time other parents are talking about “Those Kids” be our heroes, stand up for us.

The next time you see a special needs child know they are not just special in their needs but in their brilliance as well.

Take the time to meet our children. Take the time to know us.



AFTER POST: Thank you for the tremendous response to this writing and requests to post or share on your blogs, websites or educator sites. Feel free to copy in its exact form and use author credits to comply with copyright.
http://thelifeunexpected.com/

Sensitizing the world around us OR...........

This happened two years ago. We lived in another neighbourhood.Anandita had started enjoying outdoor activities due to her new found sense of freedom and unlimited space and greenery that Pune has on offer. I enrolled her into a karate class that was held twice a week in the club house of our society premises. It was more of a trial, to see if she would enjoy it, not just the actual physical part of karate but also the bonding that occurs in classes with kids of the same age.
She enjoyed the classes, there was the initial resistance that ‘No one talks to me’ or I couldn’t do this particular kick but soon it wore off. I found her enthusiastic and eager before every class. The teacher was aware of her cerebral palsy and motor limitations and in fact he impressed me when he shared that he had worked with CP kids and helped them walk/kick etc.

Two years lapsed. The teacher’s feedback was always that she was doing very well. We decided not to opt for her karate exams for the 1st year as we knew she was just settling in with this new physical activity.

One day after a session she came back with her exam application form which we had to fill and return. It would be her 1st karate belt exam and her ‘sir’ had given her the form and she was the most excited child on the block. I filled in the form giving my consent along with the money and same was given to the teacher.

To cut this short, the day of the exam arrived, a Saturday.Anandita was ready in the morning all set practicing her moves and kicks. I offhand decided to call the teacher to ask him the reporting time for the exam as one of us would have to stay back with her till her turn was complete.
He said, “Anandita is not eligible for the exam”. I thought he was erring somewhere, so it mentioned that I had submitted the form a month back with the money which he had even acknowledged. His response to that was,’Mrs Kumar, I assumed that money was for the month fees that you were paying in advance!” He said that Anandita would not be able to do the exam as she was not strong enough for all the moves because of her condition. I sensed he was making excuses. I didn’t make it easy for him. I spelt out what I felt and short of saying,’ shame on you’, I just about said everything else …you know how moms can be and especially moms of special needs kids! I put it down in writing as well and decided to stop classes with this teacher. Mentally I labeled him as insensitive and whatever term I could think of. What was happening all these 2 years then? Was she retained in her class out of pity? It couldn’t be the money!

I was simply too upset. Not because of her inability to do the exams. But for her spirit and enthusiasm that died that moment. I had no words to explain to her when she asked me what about my exam? Nor could I lie to her.

This isn’t a self pity trip. It’s also not about learning of lessons. We don’t learn them. We live these lessons. It’s like a wallowing in emotions for that moment and few days later. Deep down the reality exists—we can’t change the world around us. Focus on the immediate and get going. Stop relying on the world for approval and self esteem and feeling good. Delve into yourself and your own capabilities.

It did give me a chance to understand how people think and behave contrary to what they say.

Is it my job or anyone else’s to sensitize people on this or is it more important for me to understand how to handle my own emotions and build up my own child’s self esteem?

Is my child’s self esteem dependant on society so deeply or can I simply not play a role, or our family as a unit in building up her esteem and confidence?
.
Yes we live in a society, some aware, some unaware souls all co exist out there but their behavior is not going to get me on a roll where I lose my energy and vitality...

I spent a good amount of time ranting and raving on how people are and why they are this way, a long time ago...

I have also been told,” Why are moms of special needs children so emotional? Why don’t they simply fight for what they want, make a noise and hue and cry about any kind of injustice?”

I simply have no answer to that. I know that every one is different and has their own unique way of handling a difficult situation. I also know it’s not in me to sensitize people and society in general. The state of awareness has to come from within, from a seed that may have been sown in childhood and nurtured by family and environment. To expect everyone to be compassionate and sensitive and to think the way I do is not realistic.

So does one spend time sensitizing the world we live in or we focus on equipping our own selves in handling our challenges?

The Weight of Love - Indian Express

The Weight of Love - Indian Express


Arun Shourie writes about bringing up his son Aditya, afflicted with cerebral palsy for many years now, in his new book, Does He know a mother’s heart? (HarperCollins). Adit’s pain and that of the author’s wife Anita, who suffers from Parkinson’s disease, leads him to ask: how can there be extreme suffering if God exists? Suffering, he says, refutes religion. Exclusive excerpts

Learning environment

What a journey Anandita's learning processes have been...Till she was born i didn’t know what TGA meant (transposition of the great arteries), I didn’t even know what the great arteries were. I only knew the heart had four chambers and pumped blood and kept me alive.
Till she started schooling I didn’t know what it entailed for a special needs child. What kind of an environment would help her blossom and nurture her spirit. I am an unconventional thinker and I did home school her for some years only because no school options were there.
I am contemplating unschooling but that is a process within me first of deschooling myself of all my deep rooted conditioning and thought patterns. Let me see where it takes me.

I have understood over the years that all she needs is an environment that is as positive as possible. All my messages to her have to be positively framed my words and actions. I know she watches my every tone and every nuance of body language and makes her interpretations.
She needs a friend who can accept her for what she is and the way she is, a patient friend who is as at peace with her world as Anandita is. I know that isn’t wishful thinking. Just willing the Universe 

I have understood that it takes a lot of courage for her to face her challenges and differences and that I have to laud her every effort the best way I can. She knows her struggles and has her solutions in place.She is so aware of her feelings, does so much of self talk and finds happiness in the smallest pleasures of life at 9 years of age when children are already toting mobiles and having sleep-overs.She may not be able to hop and skip and jump. She may miss steps and lose her balance. She may never be able to handle a scissor properly or make beautiful pieces of art and craft.
A simple card made by her fills me with joy that is better unspoken.
I am filled with awe and wonder when I see how far she has come and how much she has grown.

There is so much for us to learn as a family. We love her for all that she brings. And the happiness she spreads so easily.