Independent Living May 10, 2020
When do we stop shadowing our special needs child
As a mother, knowingly or unknowingly before and after diagnosis I designed myself in such a way that I became Sivaas shadow. As a result Sivaa started using my conversations, my gestures as his own. Slowly I began to realize that he was more like a puppet who would follow my commands and was leading a so called happy life. Thereby whoever interacts with Sivaa started using me as a mediator and I began to feel stressful every part of the day. Even then I didn’t realize that I was losing a quality life until his former principal Mrs Ditti told me to step down from what I was doing. She resisted me from shadowing Sivaa at school and asked me to stay back home. I still remember that pain I had to leave him alone at school. I couldn’t watch TV, fidget on my mobile or even couldn’t sit down and relax for few minutes. I kept walking from one end t,o another. I was so restless and anxious that I would wait in our porch in the heat at 2 clock waiting for his auto. But Sivaa adapted well to the new routines before I could think of my adaptation without Shadowing Sivaa.
As days and years passed by I understood that he is comfortable at school even without me. I’m thankful to his principal who guided me at the right time. The question that she asked really made me think. She asked me as to ‘What are we aiming at’? When I replied to her self reliance skills, She rightly pointed out to me that ‘Do shadowing him everywhere really helps?
Then the first thing I did was to start working as a family sharing my responsibility with Sivaa to Anoop and Siddhu. We changed mom and son pattern.Earlier learning and skill development was my duty. Now they both help Sivaa and he is able to comprehend with their paces too. More than anything I started enjoying that quality of life as expected.
Since then, whenever a new learning happens, It’s designed as we and not as I or he. The advantage is that everyone gets a chance to work with Sivaa and everyone is well aware of the updates. Apart from all these now we have started recording everything. Thereby we are able to understand our mistakes and rectify it asap. And also when we started working as 3,his dependency on one person reduced to a large extent and he began to communicate with everyone else even outside the house. When I say communication, don’t misinterpret as verbal.
I know it is not as easy as I write here and it depends on lot of other factors which may seem to be divergent from one another. Every child in the spectrum require an adult supervision in all the activity they do. Like that every adult should know as to when they should move off from dependency to independence. Most of the parents including me fail in that and we continue with assisting them lifelong.
As I have always mentioned this journey through the life of autism is a trial and error method. The next step that we took was to widen our triangle (three of us) by adding more people to it. We started off with the lady who comes to our house to help me in cleaning. When she comes for cleaning I would go out for some urgent works leaving Sivaa at home. She doesn’t need to look after Sivaa or run behind him. She can carry on with her works. My deal with her was very simple.She has to be vigilant that Sivaa doesn’t open the gate or go out. If that happens she has to call me immediately. She don’t need to run or get panic. So she readily agreed to that and it’s working well as of today. Every time I leave Sivaa like that I have noticed a piece of cake missing,a new biscuit packet opened Or the left over chocolate got over. And some other times the hidden chocolate sauce is found out. He seems to be enjoying his ”me time” like everyone of us.He even started communicating with her for his needs. Apart from that, I started sending him alone to my neighbors house for passing on some essentials. Earlier he used to get very anxious and would run into their house and open the fridge, but after two three trials, he began to follow the command and do accordingly. I also realized that when we open up, people and society are more willing to help us, and thereby our children gets a platform to interact and socialize.
I know Independent living is a marathon ride for our children but every one of us should aim and aspire for that until we are placed somewhere near to it. Sivaa is 12 years and we have just started it off with our own pace. I know we have miles and miles to reach in this journey.
Ending this note with a small aspiration that my family aims at. We would love to see Sivaa living independently in our house for a day or two when we aren’t there with him.
Preetha Anoop Menon
You can read more about our journey at preethaanoopmenonhome.wordpress.com
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