While many parents concern involved what their child will be when they grow up parents of children with autism only have one concern, how will my child be able to survive when I am gone?
Sugat ng Kahapon, a short story aired on GMA 7 today, featuring Dennis Trillo as the adolescent male with autism and Marian Rivera as a caring neighbor, reminded me of the biggest worry/ fear I have for my daughter. What will happen to her when I’m gone? Who will take care of her? Will she be able to cope? Will people be nice to her? Will she be safe from evil people?
All these thoughts came creeping on me and it breaks my heart to pieces. I can’t help but cry buckets of tears while watching the part when Dennis grandmother died. I was even sobbing all throughout the commercial break and two segments later. I imagined it was me and my daughter was Dennis who was completely clueless on what just happened.
I know I am torturing myself for thinking these thoughts but these are valid concerns and although I have a family who understands my daughters situation so well, since I am the youngest and the mother of my child I can’t help but explore these thoughts about my daughters future without me. Where will she go? Who will take care of her? What will life be to her without me in it to help her around?
Personally, I am not afraid to die but I don’t want to leave my daughter alone. I know that death is inevitable, everyone dies, when, where and how who knows. But there’s just great truth and that is we will all die.
People have a very vague understanding of autism, they call it special child, because they are special, they have their own world, they don’t understand, they throw uncontrollable tantrums. That is what the general public know a very limited understanding of the entire picture.
People don’t always have the patience or the tolerance for people they barely know. Not everyone can understand and that’s the harsh truth.
For an adolescent male in the autism spectrum their stigma is that they scare people away. Because they are big and have this incredible strength when throwing a fit some would rather stay away from them and some would suggest that they keep them in chains or in a mental institution, to keep their “peace and order” since there are no real facilities here in the country for people with autism, like what was shown in Sugat sa Puso.
For an adolescent female the worries are different, my worries are different. I don’t fear the safety of other people around my daughter, she is very harmless, in fact she is a very sweet girl, too sweet for her own good I think. God forbid but evil people can be anywhere especially sex offenders. My daughter can be very vulnerable for this and that is what I fear.
I would like to inform everyone that people with autism are harmless human beings. They mean no harm to anyone. When they throw uncontrollable tantrums it means their needs were not met or they do not like what is happening around them. It is also a sign of frustration because they can’t communicate to us what they need. We all know how frustrating it can be when we can’t do what we want or when people around us can’t seem to understand us. Imagine that happens all the time for people with autism. They can’t make sense of what we are doing as much as we can’t make sense of what they are doing.
I hope God will look out for my daughter and all the people in the autism spectrum that no harm will come before them. I pray that God protect them from evil. I pray that one day they will be able to communicate to us. I pray that one day more people understand what autism is. I pray that one day I will no longer have these fears because my daughter is able to live independently and able to distinguish danger. I pray that the world will be more compassionate and patience with people afflicted with the autism spectrum.
12 Comments
Earth, my prayer is that you live long enough to see Anastacia grow up to be successful in whatever she chooses to do, to have joy in her heart and that she’s always protected because you’re there!
And I know God will grant that prayer because it’s the only thing in this world that you want so much!
My post on WAAD 2009. World Autism Awareness Day 2009, Respect and Support Parents of Children with ASD is dedicated partly to you Earth and to Anastacia.
Have a joyous Easter!
you know, as a mom, that is also my worry. It’s really different when the child’s mother is you… it’s just so so different… like a remember a story about a mom whose child was kidnapped by bandits who fled to the mountains. The authorities, when it neared midnight already gave up the search and rescue operation, so what did the mother do? She climbed up the mountain all by herself… And up there, she bargained and pleaded, until the leader of the pack took pity on her and let the child go…
When they finally came down, everyone was amazed at how the mother could have done it. Her answer was simple… “I am this child’s mother!”
It’s not really anguish its worry. I have relatives who loves her but well I am the youngest in the family and also they can’t be there 24/7 for her if you know what you mean.
Also its not just like leaving a pet or something. It’s a big worry and some have limited patience and I can’t bear her be in one of those institutions too.
I can hear your anguish and I wonder if there isn’t a relative who loves your daughter and who will agree to become her legal guardian in case something should happen to you. I know that this doesn’t address the specific concern that you have but I’m thinking that it may be a good place to start towards making arrangements for her.
My girlfriend has a severely handicapped son and she found that one of her nephews and her son got along great. Her nephew agreed to become the legal guardian if something happens to her so that’s what brought this to my mind.
Love and Peace,
tt
thank you for sharing this earth…i believe God will be on the lookout for your daughter, as well as all others with special needs. your daughter is lucky to have such an informed mom who im sure is working hard to make sure she has a bright future ahead, despite and in spite of her condition.