7/27/2019 My Article on Autism and role of Grandparents

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Our story actually began when mysecond granddaughter Roshneewas born. By nature I am a child

lover. I can handle new born with

comfortable ease of a mother. Iplay with them and enjoy their

company. In Roshnee I noticed

that she wont look at the rattle,

wont look at the light whenpointed and whatsoever sound I

make she wont look at me in the

eyes. Simultaneously her mother [a doctor by profession] will say

this girl is hiding something in

her and will reveal some times

later we all laughed.

Roshnee grew like any othernormal child, all mile stones were

age appropriate. Once when not

even 2, when she first observed

Cranes [Saras in Hindi] at a zoo

she raised her hands high up andsaid Crow itte Bade (italic words

in Hindi) [Crows are so big].

We also saw some unusual patternin her behaviors. She would take 2

glasses and will transfer water

from one to other without spilling

a drop. We were amazed. Shewould walk for over a Kilometer

[still below 3 yrs.] without asking

to be lifted and we marveled at her

stamina. On the pavement shespotted a metal knob head used by

municipality to mark location of

underground tap and would goround and round and we joked that

she is mother earth going round

the sun. In the house she hardly satand always kept walking from one

room to the other throughout the

day. We considered her a very

active child. She however neverresponded to her name as if she

didnt listen but she turned

immediately on hearing just a faint

crackling sound of the wrapper ofsome toffee or metallic sound of a

coin dropping. She never cried ifsome other child took away

anything she was busy with. [I

wouldnt say she was playing

with, because she didnt seem toplay, let us say she was just

handling it]. She wouldnt be

attracted towards other children.Slowly it dawned on us that this

was not usual pattern andsomething was terribly wrong

somewhere. Her mother learnt itwas Autism.

What ? Autism ?? What is

that?

Having gone round the world

never heard what Autism was. Butwhen it happened I took as

something which will be set rightwith age. But her mother knew

better. One day I overheard mydaughter [ Roshnees

mother]talking to her elder

daughter that Roshnee had aproblem and that she will not be

able to play with her as she had

always wanted to with her

younger sister and added thatwhatever be the case she was her

daughter and she loved her and

accepts her as she was. The

importance of these words andtotal acceptance of my daughter o

Roshnee and her Autism came to

us thick and fast. Till then we---my wife and Iand my daughter

her husband and their two

daughters were living nearby butseparately. At that stage, we took

some far reaching decisions. We

decided to live together so that w

could devote our full time toRoshnee.

Roshnees parents would pursue

their career which for doctorsanyway starts late. I would wind

up my business. Roshnees parenreposed full trust in us in the

handling of Roshnee without

which we couldnt have moved

much ahead. We decided to

learn more about

Autism.

By this time many more featuresof Autism showed up. Roshneestopped speaking. She will only

pull us towards what she wanted.

Her sleeping pattern had gonehaywire. She would not sleep till

or even 2 AM and would get up

early say by 6 in the morning and

still remained fresh like a lark.

Early intervention was providedthrough those who knew what

Autism was.When Roshnee was 4

years , we learnt that one Smita

Awasthi from Dubai, frequentlycomes to Kolkata[ where we

live]and provides input to parents

having kids with Autism and thather next visit was due after about

GRANDPARENT

SPEAKS

Shishir Kant Mishra

7/27/2019 My Article on Autism and role of Grandparents

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6 months and that then she was in

Lucknow. We got in touch withher and rushed to Lucknow with

Roshnee. In the train she was up

as usual till 1 AM and making all

sort of sounds which forced meand my wife to take turn in

standing with her in the train

lobby. At our first meeting withMs. Awasthi we were impressed

that Roshnee sat with her and

enjoyed sitting there and after along time she spoke bubble

while working with Smita. After 6

to 7 days intervention for one hour

each day we did notice somesubtle changes in her which after

so many years are difficult to point

out but at that time appeared huge.

Ms. Smita told us many things like

a.This technique is called AppliedBehaviour Ananlysis [ABA in

short].

b.We should try to keep the child

as happy as possible.

c.Smita flattered me by saying [I

dont know how she got it] that I

was a natural child lover and that Ishould play with her as much as

possible.

d.We should always be in control

and not the child, which meantthat if we say anything to the child

to do, then child MUST do it and

we shouldnt give up till child

doethat, even if it meant makingchild do it hand-on-hand way.It

looked all very well and pleasing.

However, real eye opener wasduring our return journey toKolkata. Roshnee was still up till

1 AM but she kept herself

confined to her berth and her noiselevel [babbling] was sufficiently

low so as not to disturb fellow

passengers.We then knew that

ABA was the route that we will

take. I joined many yahoo groupsdealing with Autism, learnt from

opinions/experience of many

mothers, and attended all

workshops on ABA held inKolkata by Ms. Smita and others.

Having our own NT(Neurotypical)children and a

grandchild prior to Roshnee wewere practical enough NOT to see

everything with the glasses of

Autism and have been lucky that

this has paid off. We did notattribute every action of Roshnee

to Autism or sensory issues and

compared any new behavior with

that of our NT children. Like most

children with Autism, Roshneewas a picky eater. She would eat

only 3 to 4 items and nothingmore. But we knew this was the

case with our NT children, whom

we cajoled, forced, and made themeat other things too. We adopted

same method with Roshnee

against the advice of many parents

on Yahoo groups and NOTaccepting it as sensory issue.

We will put a new item inRoshnees mouth and she will spit

it out. We will again put it and she

will spit it out. We will continuedoing it forcing it till she will gulp

[remember Smitas advice---we

should be in control not the

child!!]. The result is todayRoshnee eats every thing we give

to her, perhaps is convinced now

that we will not give her poison.

Over the years we had our short

stints with GFSF diet, which wasperhaps effective but almost

impossible to follow strictly with

our North Indian food habits. Wealso had our weak moments when

we changed her name on the

advice of a numerologist, visitedsome temples, prayed to God but

never let go of the ABA based

intervention.We continued

steadfastly with ABA withoutwavering and believed that Race

against Autism is a marathon and

not a sprint, meaning thereby thatresults will come but slowly.

Another advice Smita had given

later on that we should keep

Roshnee as busy as possible. We

made it our endeavour to follow iinspite of our growing age. But

writing on this subject will mean

another article.

Our motive has been to makRoshnee as much

independent and skillful aspossible so that her quality o

life improves. We believe

that Autism is for life but

with proper intervention andtraining, life of a child with

Autism need not be a burdenon the caregiver. It can be

turned into an asset and a

caregiver will be happy to

have her around. This is ourgoal we wish to achieve

before we [her parentsincluded] close our eyes.