From Kamini's Heart
What Siblings of children with Autism Spectrum Want You to Know
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The parents and I are engrossed in watching their video.
This handsome teenager gets ready to cut his birthday cake. Suddenly, he gets into an obsessive behavior of asking repetitive questions. And he wants the questions to be answered a certain way! The joy of the cake cutting ceremony is lost. The parents’ agony is clear.
My eyes move over to the other young man standing by the side in the frame. He watches the scene between his parents and his brother helplessly. He is a silent and invisible observer in this whole drama. He is the sibling of the child with autism.
I feel his anguish. My heart aches for him. I wish I could go through the screen and give him a hug.
Suddenly, I miss Tanya (my daughter), who is away in the US, studying.
Time has flown by. My children are now adults. Scenes from the past flash through my mind.
A two-year-old Tanya tugging at my blouse to get my attention – while I’m running language drills with Mohit.
A seven-year-old Tanya being upset with me for being late for her annual school function. Yes, I was late because I was at an IEP meeting at Mohit’s school.
A ten-year-old Tanya with tears running down her cheeks saying, “you love Mohit more than me.” And me desperately trying to explain, “I don’t love him more than you. He needs me more than you.”
Tanya and Mohit
But over time I have realized that it is not the truth. All your children need you. Not just the one on the Autism Spectrum. Period!
It took me a while to learn this the hard way.
Please don’t repeat my mistakes. Instead, remember one priceless lesson from them:
Time is precious.
source
Here are some concrete steps that you can take now to ensure that your child does not feel like an outsider in her / his own family:
Take care of yourself first
Do you feel physically or mentally exhausted? Do you find that you spend all your energy in putting out fires? If yes, then you are in crisis mode.
You MUST take care of yourself first.
Remember: Both your children need you
Become aware of this. Say to yourself every morning, “Both my children need me.”
Most parents are so tuned to the needs of children on the Spectrum that they forget about their other child. After all, he can take care of himself right?
No! S/he needs you just as much as the child with autism. We have no idea how autism affects siblings of the child with autism.
Make a schedule
Early on in our parent training program, I hand parents a schedule form to fill out.
The five things that I look for in the schedule are-
a. Me time (alone time for both parents)
b. Us time (time with your spouse)
c. Guiding time (with child on the Spectrum)
d. Time with the sibling of the child with autism (often ignored )
e. Family time (interaction with the whole family)
The schedule serves as a visual reminder to fine tune the day, as a guide for families having siblings of children on the autism spectrum.
Here is the schedule that we use at SAI Connections. You can use it for yourself or the families you work with too. [Download Time Table Schedule]
Do not compare
Each child is unique. Each child is beautiful. Respect each child’s individuality.
I worked with a family where the parents were bogged down by the older child’s behavior issues. On the other hand, the younger one was a calm, helpful child who always topped his class. But they rarely spoke of him. Conversations always revolved around how upset they were with their elder son’s behavior issues.
It’s natural to be upset by the negative behavior of the affected child. But we must take time to look at the positives and encourage the child who is doing so well.
Play with all your children
Get on your knees and play with them when they’re little. Do things together.
Playing with a little child will help you and ground you too. Plus, when your children are older, they’ll share their thoughts and feelings with you.
Also remember, your time cannot be substituted by toys or the iPad. You cannot be replaced.
Keep the channels of communication open
This is crucial, especially during adolescence.
Ever experienced the sibling asking you to leave him alone? That’s probably the time when he needs you the most. Look beyond the words. Look at actions. Be there for them, but in a non-intrusive way.
Set limits sensibly
It’s essential to set limits. However, while one parent is in strict mode, the other parent should be available for communication.
Recently, Anil set a limit on Tanya about spending. He was firm with her about budgeting her expenses.
She was upset. He was cool.
I put in extra effort to stay in touch everyday and talk about her health, her day at college etc. It’s important to maintain the balance in communication too.
My dear friend, Autism affects the whole family, not just the person diagnosed with it.
“I grew up believing that I was not worth anything. I felt I didn’t belong. I felt neglected”, a sibling of a child with on the autism spectrum told me.
Your ‘other’ child does not deserve to be an invisible casualty in this war called Autism.
You, the parent, can, and must, be the Shield.
“Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin.” – Mother Teresa
