1. Love is not always aloud.
I read an
article which said that mothers of autistic kids have stress level like that of
combat soldier which I absolutely agree with. Being mother of a non verbal
autistic kid has not been very easy for me. Getting attention of your child
usually requires at least 5 or more attempts of saying shouting, yelling and
screaming.And this is to get one thing done and for everything;you have to
repeat this process. As for me I dare to confess that I have even resorted to
physical measures which are typically expected of any Indian mother. But the
amazing thing is my daughter always forgave me for not being perfect. She with
no words always explained to me that she is trying hard too. She never
retaliated me for being such a noisy mother or for making mistakes myself.
Not
once she told me" I LOVE YOU", but whenever I was sick, whenever I
was depressed, emotionally shattered, physically tired....she was with me.
Silently sitting beside me for hours sometimes cuddling close, teaching me
"Mom it’s OK to be this way and I LOVE YOU no matter what happens. Her
love was and is and maybe shall always be silent as emptiness; it cannot be heard or seen. But
it can be strongly felt.
And finally I came to the conclusion " Love
is not always aloud: it need not to be explained or mentioned, it speaks in its own way but always not
aloud.
2. To be different is O.k.
From the beginning of my motherhood I was worried
about my child being different. I remember my grandmother was the first one to
diagnose my child to be different and Elijah was only 1 year old then. Since
then I worried for the most trivial of things. Why is she not smiling, why
doesn't she eat, why doesn’t
She sleep and the list goes on.
Through years
passing by she managed to survive, she doesn't smile often but her face lights
up when she is excited, she makes strange noises when she is bored and when happy,
she is a picky eater but by Gods grace she is healthy and alive, she doesn't
speak but she sings, she does sleep much but she is not crazy or sick because
of that.
Nine years of my motherhood wasted worrying about
everything. Now that I have started to settle down, I feel proud of my daughter’s
mettle and her ability to fight and survive even though things are different
for her. Because of her I have learned to appreciate more of those who are different,
more patience to those who are slow. And once in a while I find few of them
much more wonderful and better those us the so called "NORMAL".
3. Concentrate more on what you have.
Elijah is a VI grader now, but she cannot do
academics as good as her classmates. She cannot read paragraphs or lessons nor
understand them. Her math is limited to counting, addition,subtraction and a
little bit of geometry. It’s not that her IQ is lesser. She can conceive all of
it, and it’s in her brain but cannot reproduce it when we ask her, thus disabling
her to prove that she knows it all. This is true to many Autistic Kids, thus
they fail to cop up with their peers.
Initially I was worried to the chore. One day
Elijah came to me with a board, where she made a picture out of shapes. It was
a house with a small garden and a tall tree with fruits on it; while the sun
shined bright ....birds were flying in the sky. She made it with play dough.
Out of astonishment I dropped the chores in the kitchen and sat with her
enjoying the scenery. All of a sudden she pointed the roof and said TRIANGLE,
the trunk of the tree RECTANGLE the sun CIRCLE the fruits were MANGO and the
shrubs had FLOWERS on it and the creatures flying were BIRDS.
I hugged her tight and cried. She is non verbal,
and I have been trying to teach her all that for nearly a year with no response
from her. Our Kids understands more than we think. They are unable to prove or
convince us that they know. They cannot compete and show their worth. After all
it’s their disability.
From that day onwards I stopped trying to bring about
things that are difficult for her. I concentrated on what she had. She has
dexterity of fingers, a sense of smell, accurate memory of visible objects good
sense of music and so much more. Same as any other Autistic kid, she too has
something special in her
For her age and ability, she is a wonderful
sculptor, a good cook a jewelry maker an art creator. What if I had
concentrated on her lacks, I couldn't have helped to polish her skills and she
would have lost all her confidence and I could have been a depressed mother.
4. Patience always pays.
Two or Three years back if somebody came to my
house without notice, they would have strongly regretted for not taking an appointment.
Because it was clutter and mess all over. You will have to be careful while
sitting on the sofa, because when you get up, your bottom might have rainbow on
it.
Paints on wall, play dough in the fridge, paper
bits, beads on floor and bed. And I cannot lay a finger on it. She would show a
tantrum for it. My mind more cluttered and messy. Eventually we learned
together to organize things. She hated me dictating terms on her. I gave her
boxes emptied my cupboards and cabinets for her. She sorted each item according
to her convenience and that's it..... All the clutter and mess gone.
She loved to play in the kitchen; I have lost
countless numbers of fruits and vegetables gone into trash in her process of
learning to make juice milkshakes and smoothie. At times out of frustration I
have yelled and screamed at her, drew her away from the kitchen locked the
doors. Gradually she got it right.Now she makes it better than me.
Let them make mess, waste too and let them learn
that way. Be patient with them, tolerate them they are tolerating us as well.
Believe every minute of patience you gift them will be rewarded back as
precious priceless and proud moments of your life.
5. Live in the Present and the future will be bright.
I started therapies for Elijah out of despair. It
was sheer agony and anxiety about future that made me run around like a mad dog
in search of therapies and treatment for her. Unfortunately concentrating on
her future I forgot she needed help now and now itself.
I Wanted her to talk in future, learn in future
go to a typical school in future and eventually to a college when she grows up.
I wanted her to be like every other child in future. I miserably forgot she
needed to communicate now, when she was in pain when she was hungry or thirsty,
when she wanted something else to eat other that what I fed her or some
entertainment when she was bored.
Wherein Elijah started to show tantrums and I got
worried sick to deal with it. And started paying intense attention to her,
probing and pestering her to convey what she wants. And I slowly started to
learn her language. She started communicating in her own way; she became better;
her and my future which I envisaged to be blurry is much brighter than I
imagined.
The lesson learned is a well managed present
brings a smooth manageable future.
6. What you see is not what I have.
I deliberately take Elijah to restaurants before
12.30 pm because the crowd starts after that. She has no sense of public, so
anytime she could scream or make strange noises that make other uncomfortable.
This time I ordered for French fries and a green
salad. She loves both. When the waiter brought the plate she started shaking
and making noise. All my attempts to stop and control her in vain. I was
terribly embarrassed.
But I let her do it to me. Simply sat until she
tried to stop by herself. The she arranged the French fries according to its
length and the green salad in sorted colors, then peacefully sat and started
eating it.
Another day when I made French fries at home she
did the same thing sorting it in length and making a smiley with sauce on the
plate. A visual treat to see it arranged beautifully.
What people saw in the restaurant was an
unacceptable and Louise behavior. But showing a little patience and letting
myself embarrassed there in the public gave time to sort her issue and she
managed her problem well.
People saw something unpleasant, but the real
reason they never saw. I often complain about her, not eating not liking loud
music, not wearing jewelry.
But she is a wonderful cook. Her Instant pasta
and noodles are almost perfect. Dosas crisp, omelet soft. Though she doesn't
eat, she cooks, she makes jewelry but never wear them, don't like loud music
but makes sing softly. What a contrast. You can never judge an Autistic kid by
the way they behave.
Who you see from outside is not what they are.
7. Never Give Up.
If I had stopped trying when she refused to hold
a crayon or play with play dough. Or given up when she showed a tantrum I could
have never seen those beautiful pictures she draws. Those sculptures and crafts
she does. I saw a chrysalis coming out of shell. I saw and together we took all
the pain.
They are tired of us and are equally stressed
when they cannot make it. Be with them stick together it’s not easy for either
of us. But giving up will never satisfies or makes a parent happy. Keep on
trying until they are confident to try it by themselves. I guarantee hard work
always pays worth.
Temple Grandin once said “THE WORLD NEEDS ALL SORT
OF BRAIN, THE AUTISTIC AS WELL".
These kids they have made us more patient,
loving caring and in many ways better than many people around. We should be
thankful to them. Just hope I will be able to do justice to Elijah... and be grateful
to her for being so tolerant and forgiving towards me. To love without
expectation is something we should learn from them.
And all these things I learned from a so called futile Autistic Kids.It could have taken atleast a lifetime for me to learn these things without her. Elijah made me wiser and better.And I feel obliged to love, care and show more patience to her, more and more each day. What else can I do rather than Thank God for choosing me to care for his mst wonderful creature...MY DAUGHTER ELIJAH.
