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.
More autism related posts can be found here.
April 11th, 2009 at 3:37 pm
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.
April 12th, 2009 at 12:38 am
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
April 12th, 2009 at 2:11 am
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.
April 12th, 2009 at 2:17 am
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!”
April 12th, 2009 at 10:29 am
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!
April 12th, 2009 at 10:52 am
@ Dharlz exactly my sentiment others would give-up because it’s not their child but since I’m the mother I will never ever give up.
@ Rolly thank you for the prayer I appreciate it more than anything else. You don’t know how much that means one soul praying for another. Thank you and may God also protect you and your family.
Happy Easter
April 12th, 2009 at 11:25 pm
I think autism has finally started to ’surface’ as far as educating the ‘uneducated’ about it. The more you talk about it, blog about it, ect…the more people learn. You do a great service to your daughter, others dealing with this, and those who haven’t dealt with it. God bless.
jenn’s latest blog post..Just Soar
April 13th, 2009 at 2:51 am
I know that God has a plan for each one of us. Sometimes he tells us indirectly or sometimes he does not tell us. Everything that happens to us has a reason and our weakness as a human being is sometimes we don’t understand if we experience difficulties in life. I was a believer before, had my doubts when something bad happened to me but regained my faith when i met my wife. I am sure everything will be fine both for you and your child even when the time comes that you won’t be with her anymore. Just be the best mom for her and i am sure she will be ok even when you are not around. thanks
lemuel’s latest blog post..Holy Week in the Philippines – Cutud, Pampanga
April 16th, 2009 at 2:58 am
i’m sure god will find his way of protecting your precious child.
April 17th, 2009 at 3:01 am
When you are gone, she will remember you. And in remembering, she will survive!
Barbies4Sale’s latest blog post..Barbie Princess Swan Lake Musical Castle for sale
April 18th, 2009 at 11:47 pm
I share the idea of those who says that GOD will help them after parent are gone.
But the problem is really big, and the society don’t accept this kind of behavior and parent should stay with thier children.
Fot that i think we shoul bring family values to our world.
For exemple if we are realy related to our parents, brothers or sisters. We will not care about that too much, because we will know that there is someone that will care after we leave.
Today we live in individualisme more and more and we are more separated not only familly but also we find alot of single women that I’m sure they can’t protect children without the help of the father.
jessy’s latest blog post..Which university should you attend??
April 21st, 2009 at 2:01 pm
bes, i do not know how to start…..but i want you to know that i understand how you feel as a mother and as a friend, the torment that keeps breaking ur heart and thoughts…….iam completely touch and cant help but cry. Just always remember im always here for u and anya….and i will continue to praying to our good God that He will blessed you more a heart that is full of courage, a mind that is pure and tender and a long life enough to share it with your beloved Anya. i love you friend take care