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.

Uncomfortable topic

A wonderful link that expresses with simplicity and clarity the ways a child can protect him/herself by differentiating the different types of touches.May be an uncomfortable topic for many parents but in the real world it needs to be dealt with complete awareness and honesty that it does exist..

It is one that children can watch and understand : -

Recognising good and bad feelings when you are touched

Understanding that it is your right to protect yourself from what you dont like

Ability to say no, not feel guilty or embarassed

Confiding in a trusting adult.


Thanks Shilpa

Watch this
http://www.youtube.com/watch?v=o0_PUSb8GrY

Sensory Integration-handling sensory issues

This is something i have really researched upon not just to use for Anandita's sensory needs but also to gather more understanding about it as a whole..I have written here chiefly focusing on my daughter's issues but the area is so vast that it would be better to google it for more informaiton.

Imagine this situation: My child is playing quietly in the dining room when the pressure cooker suddenly blows its whistle in the kitchen some meters away. My child is not just startled but becomes totally frightened and stiff with fear. Nothing can soothe her in that moment of anguish.
My child has a primal fear of climbing anything where her feet have to leave the ground. No amount of reassurance/encouragement can relieve her fear and gravitational insecurities. She will hold onto me for dear life if she is unsure where to walk say on the road/kerb or even while climbing a stool. She can’t stand on one foot and has difficulty with any action that needs balance.
I find almost all her crayons and pencil points broken as she is unable to decide how much pressure is needed to be applied on the object. She is unable gauge how much pressure is required to turn the pages of a book or to hold a cup of water.
If she has to fall down, her reflexes are slower to respond. Her poor body awareness is visible during activities. Even while helping her get dressed and undressed she does not know how to move her body. The difficulty is in motor planning here where she cannot conceptualize or figure out what each part of her body needs to do in order to move a certain way or complete a task (what is an unconscious sense to us, becomes an active, conscious, frustrating sense to them).
Each of the above is to do with our senses. Our sense organs are highly sensitive and extremely complex.
The above scenarios all come under the purview of SENSORY INTEGRATION.
Sensory integration: What is it?
All of us receive information from our environment-internal and external through our senses-vision, hearing(auditory),touch(tactile),taste(gustatory),smell(olfactory, vestibular(movement) and proprioceptive(joint and muscle).All of us respond to these stimuli simultaneously. And the term ‘sensory integration’ is the process by which we receive this information. Our central nervous system directs this information to the appropriate parts of the brain where the information is integrated so that we can respond to the stimuli.
When we cannot automatically integrate sensations and respond in an adaptive way, we get a disorder of sensory integration. It is not just an ordinary disorder. This complex neurological disorder can have a negative impact on the child’s capacity to learn, to function in socially appropriate ways and perform the daily tasks of living, and self esteem.
In the above instances I have touched upon only those areas whereAnandita has a lack. The spectrums of sensory integration issues are many involving all of the senses. My concerns for her were due to her poor motor control, postural instability, auditory hypersensitivity and poor hand eye coordination.
During her annual assessment it was recommended that she get a SI assessment done by a specialist Sensory integration therapist. I was asked to fill up a form that was so detailed and exhaustive that it consumed my attention totally. The questions asked were specific, some so relevant to me, some unnecessary. I came to understand how many areas were covered under this issue. It had extremely specific questions on her Social interactions/Sense of sight/touch/smell/taste/vestibular/body movements/hearing. And I had to tick the fields under Always/Frequently/Occasionally/Never.
Usually before a therapy session that involves the tilt board/obstacle play; my daughter is always fearful and scared. She keeps repeating the same things again and again that she is scared, will break her knuckles and look fearful. Soon after meeting the SI therapist I understood two things-
(1)She has a PROPRIOCEPTIVE DYSFUNCTION. The proprioceptive sense refers to the sensory input and feedback that tells us about movement and body position. A dysfunction in the Proprioception system affects the child’s awareness of their body position in space It's "receptors" are located within our muscles, joints, ligaments, tendons, and connective tissues. It is one of the "deep senses" and can be considered the "position sense" These activities are almost endless in choices. It refers to motor control and planning, body awareness, grading of movement (knowing how "hard" or "soft" to perform a task), and postural stability. If the proprioceptive sense is not working well, it will be difficult to move in smooth, coordinated, and properly graded movements. These children will have difficulty with both gross and fine motor tasks such as riding a bike, writing, walking, crawling, or playing sports. Some children also require additional proprioceptive input just to keep their bodies calm, organized, and arousal levels regulated.

(2)Although all obstacles play and tilt board climbing and balance activities are extremely vital for her, doing them consistently would certainly not help her overcome her fears. Unless she was taught certain calming techniques. Here calming techniques meant training her brain in such a way she would be able to overcome the fears gradually once her senses were integrated. Calming techniques are not learnt overnight or in one SI therapy session. It is something that has to become a part and parcel of her day to day life.

Calming techniques:
(1)I didn’t know that heavy muscle and joint activities could calm and organize her body until I related it to myself. When I did yoga or hit the gym, there were days when I would end the session with the feeling of “just right’. The same applied for her too. Activities such as crawling, pushing, pulling, lifting, climbing and "crashing" all provide inputs to receptors deep in the muscles and joints that provide calming input to the body. Children also get this same "ahh this feels right" feeling by doing play activities that give them this input. By providing this type of regular input it would be possible to feel "just right" throughout the waking hours. When in doubt, "move, move, and move!” Activities that one can include are trampoline jumping with assistance in holding, crawling through a tunnel, climbing, using a swing, wheelbarrow walking, bouncing on a large ball.
Swinging is the best technique to improve balance. For anandita it was recommended that we could try different positions on the swing-face down, sideways sitting, even standing and along with this to gradually introduce resistance activity. She could be asked to stretch and pull an object towards her while on the swing. The pace of movement should be changed every time, and the direction of the movement too.
A simple exercise that she did with anandita was like this-Diti was face down/tummy down on the swing and swinging at a moderate pace and with her right hand she was asked to pull an object towards her. This combined two aspects-balance and resistance activity. Small gentle doses of swing activity are required for children with gravitational insecurity.
Walking on unstable surfaces is also important to enable the body to learn what it needs to do to maintain its balance. Body adjustments come with practice on different surfaces.
Teach the child to gently rock herself. Or opt for a rocking chair/rocking horse. The rhythm should be gentle not over stimulating.
Essentially any activity that involves movement and joint action must be a part of this such as exercising to music- including walking, skipping, jumping, running, galloping and hopping,whatever the child is capable of doing.Engage in activities that require pushing, pulling, squeezing, lifting, carrying, twisting, and lugging along.Even jumping activities like jump rope or jumping on the trampoline,Playing catch with a variety of objects,activities that involve climbing, hanging from bars, walking on a balance beam.
(2 Another form of sensory modulation is "Deep Pressure"

Deep touch pressure is helpful for many problems with sensory integration, especially those involving the tactile and proprioceptive senses. It can mean simply rubbing your child’s shoulders or giving them a warm bear hug. I was asked to try and squash up diti between 2 pillows or let her self-administer pressure to his or her joints by doing heavy work like lugging boxes, pushing and pulling a bolster, putting away therapy equipment like stools and wedges in the right place.
It is often helpful to message the child's hands just prior to attempting fine motor tasks. The assistant can apply continual gentle pressure on the child's hands with their hands as they are rolling out play dough or washing their hands. Having the children wear a weighted backpack or carry their workbaskets enables them to feel the weight on their muscles and joints. Fall into a beanbag chair. Jumping and rolling games. Slowly roll a ball or bolster over the child, applying pressure.


The Process
It’s important to determine which sensory systems are involved in the area of need. It is also essential to know where the child is developmentally. Make notes as to what the child is doing (don’t focus only on what the child is not doing) and any behavior patterns. Some children differ from one day to the next, having off days and ‘good’ days. Be sure to make note of this. The child with SD may have a difficult time reading cues in the environment (both verbal and non-verbal). If the child is receiving the sensory information, they might not have the ability to organize this information and produce an efficient response. For these children everyday ordinary tasks are extremely challenging to perform and respond to.
Key facts during the implementation of the process:
For any SI session to be effective, the stimuli used should always vary. No set exercises/play for this session. Use novel stimuli.
Use novel positions.
Use novel places-not just indoors, use the park, garden and wherever possible.
When movement is used for them, say on a swing, the pace and the direction should vary.
No predictability here because with novelty, the brain also receives and responds to the stimuli in a more aware manner.
Always be patient. Suppose you want the child to reach a ball pool by crossing many obstacles (objects strewn along the path).Try not to prompt what the child needs to do or how he needs to use his body to reach there. Always give the time to the child to figure it out for himself/herself.
Proper intake and use of sensory input is absolutely critical to a child's maturation process and the building of core, foundational skills.

Eyes that speak-a newspaper article