I am so grateful for the people in my life - family, friends and acquaintances - who completely understand what it is like to raise a child with special needs. I am indebted to their kindness, generosity and compassion. I appreciate their desire to learn about autism and how they treat Ava as if she is any other child. I am thankful for the resources they've connected me with to help my daughter. I do not know how I will ever repay them.
But not everyone in my life is as generous with their heart. WHY are some people so clueless? How can I get some people in my life to comprehend Ava's disorder? How can I get them to know what it is we go through as a family? Why don't they "get it"?
At times I feel so foreign, so isolated from the real world. My daughter's future is a big question mark. And I am talking about the simplicities of life -- I don't know if my daughter will ever feed herself, walk down the street by herself, go to the bathroom without assistance or be able to brush her hair. I am going to try my hardest to help her and provide her with the best education and therapy to teach her those skills. But there is no guarantee that Ava will be an adult who can function on her own accord. She may require assistance for the rest of her life.
So the pressure is on now to get her what she needs. She is still very much a baby. She is still young and her brain is forming. We got her intervention at an early age, however it was not as much as her doctor recommended. We had to build slowly because there were very few resources available.
When I get resistance from people in my life who say, "I can't help you, " or "Why can't you participate," or "Ava is not really autistic". It makes me extremely sad. If anything should happen to me -- or my husband -- I wonder if she will be well taken care of. I wonder if these people really understand Ava's needs.
I've tried everything to educate them. I've been subtle, I've been pushy and I've had other people intervene. But it is quite simple: they are in denial. I can't get them to understand. I exhaust myself trying and it only frustrates and saddens me.
But I cannot waste time on those people - I have to move forward for Ava. I just hope they become enlightened in some way.
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Comments (3)
I bought my grandson a T-shirt that says "Please keep staring, maybe it will cure my autism. Then we can work on your social skills."
I can really relate to this post! I have heard it said that having a child with autism can be more stressful than having a child with cancer. Now, this shouldn't be a blanket statement because every case of autism and every case of cancer is different. However, I think the main difference is that people 'get' what it is to have a child with cancer. They understand that it is a gut-wrenching heartache. They understand the seriousness of the disease. They understand that it is not about ego and that they will not just 'get over it.'
With autism - Not so much. There are so many clueless, insensitive comments. They are not evil or mean-spirited. Just clueless!
But yoiur final line was very true. We cannot waste time on those people - We have to move forward forour kids. Others will become enlightened when one of their family members is diagnosed with autism.
my cousin has autism and i babysat a boy who has it. they may not say much but they can be the sweetest kids around. and if that picture is your daughter, i just wanna say she is adorable and beautiful :)