Voices from the spectrum series of interviews have helped me understand Autism from a very different perspective and getting to know the families has been a very positive learning experience for me. Today allow me to introduce you to the family of Usaid, wonderful parents and an amazing brother, Owais. They have created a positive, encouraging and fulfilling home for Usaid that has nurtured him into a multifaceted personality who studies extremely well, paints beautifully, plays wonderful music and is a budding dancer. Above all, he is an amazing person with oodles of confidence to take on the world!
Q) Would you like to share your Autism journey so far and how you nurtured his talents..
My name is Fatima Shaikh , I am mother of Usaid . He is 17 yrs , on the autism spectrum and studying in standard 12.
Mine is a small family . My husband is my pillar of strength and support and my elder son is 20 yrs , I call him my angel & I cannot function without him.
Today I want to read a poem
WELCOME TO HOLLAND–by Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
I love this poem and believe in it.
It’s true because I have met the most wonderful parents , friends and families from the parent support group FORUM FOR AUTISM who have handheld and guided me on how to deal with autism and help my child after my his diagnosis.
What I also learnt is that if I don’t believe in my child , who will? If I don’t understand him , no one will ; and if I don’t advocate for him no one will !
My son was diagnosed at 3 ½ years. We went through all the usual emotions that all parents go through . Shock; denial and finally acceptance.
It’s better not to waste much time in the first two stages, that is shock & denial and accept the diagnosis because the first few years are very crucial and will help your child progress well with proper therapies.
“Acceptance doesn’t mean resignation. It means understanding something is what it is and there’s got to be a way through it.”
Please remember that autism is not a race but a marathon.I believe that the parent is the best therapist for the child because you are with your child 24 x7x365. You know your child the best and vice a versa.
Family support is very very important. Equal contribution of all the members will help in the well-being of the child. My husband used to come night and help me with any therapy that is left for the day, feeding him dinner and putting him to sleep. My son used to take him down to play with his friends ,to the garden, for swimming and skating.
We used every opportunity to socialize with relatives specially his grandparents, uncle and aunts. This helped a lot because whenever they were emergencies my son was able to stay with them and I was able to focus on the family member who needed me.
Support from school is another important factor. My son’s school life was good. It was teamwork with the teachers, the counselor and myself and this has really helped shape him up well.
Find your child’s strengths and nurture them , work on their weaknesses do not focus on them . My son was good on music, arts and recently he has started enjoying dance so I try to balance his likes with his academics.
I do not want to force my ambitions and expectations on him . I would be happy if he turns out to be an independent self-sufficient and educated individual . I’m working on his life skills and independent skills for that.
I respect my sons feelings and emotions. If he says no to something I do not force him .
I maintain a journal of his achievements , even the smallest ones . I call it my Happiness Journal. Whenever I feel low I open the journal and go through it and it boosts me up when I realize how far we have come.
Q) Writing a Happiness Journal is an inspiring idea. Your advice for other autism parents.
Please do not compare your child with another child .Please compare him/her with their own progress.
As a parent you are doing the best you can! I strongly believe that every child has come with their own destiny to earth!
Now let’s chat with the star of the interview – Usaid.
Q) How old are you? What are you studying?
I am 17 years old. I am in the 12 Std now.
Q) Congrats on scoring 90% in Xth exams, would you like to tell us about all the hard work behind it?
I started working hard only after December. I studied from morning to late in the night with breaks in between . My mom helped me with planning my study schedule and also with practice of question papers .
Q) What is your favourite subject Usaid?
My favourite subject is English and accounts.
Q) When did you start painting? Have taken any course on painting?
I started drawing when I was a toddler and started painting from the last 4 years .
Q) How often do you paint and what do you like to paint most?
I paint in my leisure time or when I like any picture or image.
Q) You play keyboard beautifully, where did you learn to play?
Playing keyboard is my inborn talent. I learnt by watching my music teacher in school . Dinesh sir has been my best music teacher. Later Abhijeet sir and Madhu sir have been training me for Trinity college music exams . I have recently given my level 3 exams and scored 72%.
Q) Do you practice everyday or how often?
I play my keyboard and piano everyday. It is my stress buster.
Q) Tell us about your latest passion – dance.
I started enjoying Dance . My mom suggested to join Shiamak Davar’s Dance classes. I enjoyed the winter funk 2016. In summer 2017, I took part in the bollyshake online dance competition. Shiamak Davar himself chose me as one of the handpicked winners. Later in June I met Shaimak Davar at the summer funk in shanmukhananda hall in Mumbai . He praised my dancing abilities and I was formally taken as part of his victory foundation dance team.
Q) Would you like to share your experience of learning dance with Shiamak?
I enjoy learning dance with the victory team . My teachers Lynn miss and Swapnil sir are proud of me and I like them a lot. I am looking forward to the shows coming up on 25th October and 10th December.
Q) What are your hobbies Usaid?
My hobbies are dancing, playing keyboard, piano and drums, listening to music, painting and reading.
Q) How do you like to spend time with your friends?
Going for parties and movies, having sleepovers, hanging out with them.
Lastly let’s chat with Owais, elder brother of Usaid.
Q) How old are you? What are you studying?
I’m 20 years old, and I’m studying for BE.
Q) How do you like to spend time with Usaid?
There’s no specific way how I like spending time with him. We have our phases where we fight like monkeys, or we are teasing each other, or even sitting besides each other, watching tv. But that’s how it is.
Q) Would you like to share a few experiences from your childhood about growing up with Usaid?
With Usaid, everything has been a pleasurable experience. With going to different therapy sessions with him and mumma, to spending times alone with him and having a little gaming party with his friends, to everything.
So once, mom was out for the whole day for some work, leaving the two of us at home. It was lunch time, so I served him lunch. But since mom wasn’t around, he wanted to order something. We literally fought for an hour and finally, I got some food ordered. He loves getting his demands fulfilled you see.
Q) Your advice for other Autism siblings …
I don’t really have any advice. Things do get tough at times, but it isn’t the end of it. They aren’t your usual siblings. They deserve more love and attention. Give them that. One more thing. If you get ashamed of them, you’re doing it all wrong.
I hope and pray that all your dreams may come true Usaid and am sure you have the blessings of every one reading this interview!