Today I want to take the time out to answer a question I was asked. I have been thinking a lot about it. I have been thinking about it for a number of reasons – the least of which being that I was unsure if I should answer this question publicly, or privately.
Here I am, so obviously, I chose the former. I want to explain to you why I did that before I go on. I want to make it very clear that I am not trying to place people’s privately asked, and sometimes very personal, questions in the spot light for all to read. And I try to use my best discretion in deciding. I have received scores of questions – but this is only the second one I have answered publicly.
I’d like to explain why. For starters, this particular question was asked in a comment rather than privately through the “Ask Me Anything” feature on my blog. And that was one of the major factors in my decision to post my answer. But the main characteristic between this question and the previous one that I answered publicly would have to be that I think both questions are on topics that I think others may benefit from. Maybe I am being a bit too arrogant in thinking that my answers could help someone, or even more than one someone, but that is nevertheless the reason. I know from my own personal experience that not all people will ask the questions they desire to have answers to. And, so, because of that I am answering this question publicly in the hopes that someone out there reading my answer may also benefit from it.
Underneath Monday’s post I received one of the most difficult and heart wrenching questions to date. There are a few comments I would like to make in regards to it. I will not quote the whole thing here because the comment did not only contain a question, but this is an excerpt from it:
“You say that autism shouldn’t be pitied. How do you feel about other parents of autistic children? You’re right that it is hard, and life is hard. The first thing I experience when I meet a new parent with an autistic child is sadness. I know the hardships they have gone through and are going through because I am going through them. The first thing I want to do is give them a hug.
Am I wrong? I’m struggling with this. I’ve met many typical children. I have typical nieces and nephews. We can babysit 3 or 4 typical children at a time. Taking care of an autistic child is a bigger challenge. I love my boy to pieces, and I don’t see him as a burden in any way. Should I feel pity for other parents of special needs children?
I really don’t want to offend in any way. What are your thoughts?”
First, I want to tell you I have thought long and hard about an answer to this question. I am not sure if I have found it yet, but I will tell you what I have come up with. It is completely honest and drawn from my own experiences, of course.
You are right that we as parents of children on the spectrum have a shared camaraderie – all parents of disabled children for that matter do. No one can EVER begin to fathom what it is like for us. No one can begin to imagine what it feels like. It is an emotional rollercoaster. It is constant motion. Spinning endlessly. There are haunting questions, sleepless nights, constant guessing games, and (for some) a deafening silence. There is a disgusting amount of critical stares, fewer invitations to social events, lost friends, utterly torn apart lives, and puzzle pieces. There are times when it feels like caring for one child on the spectrum is harder than caring for five neurologically-typical children – because it absolutely is. For some parents it means less hugs, behavioral issues, depression and never hearing their child say their name, “I love you” or even, “I hate you”.
I understand it is hard not to pity someone in that situation. But for me, pity is a strong word. And a feeling I like to avoid all together.
I’d like to tell you a little story to help you understand why..
There is this woman who continually tells me that I am “an amazing mother, she does not know how I do it, and she could not do it herself.” Every time we talk in person she tells me this wearing a smile riddled with pity. She will repeat it more than once, telling me that I am “an amazing person, that I am an inspiration in the way I care for my daughter, that there is no way in this world she could handle my life.” Is this supposed to be a compliment? Because it sure does not feel like one. It feels like pity. A whole lot of pity. And pity burns a hole in me. Pity enrages me.
I do not want to be pitied. And worse, I do not want my daughter to be pitied. The pity felt for parents of disabled children stems directly from the child’s disability. So, indirectly the child is actually the one being pitied. The parent is just the conduit through which this pity flows.
Empathy. Compassion. That is what I feel for parents of children with disabilities. I feel empathy because I can easily relate to them. I can understand that their disheveled look comes from chasing a child that NEVER sits down. I know that the circles under their eyes appeared after consecutive sleepless nights because I too have them. I can appreciate their ceaseless efforts because I also live that life – I know the ins and outs of it. I feel compassion because I know the haunting questions in their mind – “what will the future be like, what will happen after I die?”… I know what it is like to wonder if I am doing everything in my power to help my child’s situation. I realize what they are going through because I too am going through it. I can empathize with them. I can feel compassion because it comes from the right place.
Would you like to know what else I feel and see in parents of differently-abled children that is lacking in most other parents? I feel and see their love. It is more pronounced. It is a love that has been tested many times over. It is a love that can only be emitted by a person who has mastered the art of voiceless communication. I see a selflessness that can only be found in the person who is willing to sacrifice it all for the chance to hear three words that most get to hear every night at bed time – “I love you.” I see a person who has sacrificed much in the manner of friends and a life in order to properly ensure that their child has the right care (because let’s face it not many people would know how to handle our children if they had a meltdown.) I see a sense of determination that I do not find often in others. I believe this is because most do not know what it is like to spend their lives fighting. As parents of a child on the spectrum we are often forced to fight. We fight for a diagnosis. We fight for answers. We fight for services. We fight for the civil rights of our children and others like them. And then we have to fight some more. I also see patience – the patience of someone who is willing to wait a lifetime just to hear their child say their name. We wait for answers. We wait for services. We wait for the world to accept our children as they are. And then we wait some more. And then I see the respect (and understanding) in their eyes – a great degree of intense respect given freely to all. Because it is only when you have to live your life daily demanding respect for someone you love that you realize how much of an inalienable right it is. And then you award it to everyone – no matter what they look like, no matter what they are wearing, or no matter who they are. And respect is lacking in a great deal of people.
And after I am done seeing and feeling all of these things I think to myself how immensely fortunate they are. Yes, fortunate. Fortunate, that they get it.
These parents would not possess all of these amazing attributes if it were not for their children. Autistic people are amazing. They give the purest love. And best of all, they give it freely. They have so much to teach; and the parents that realize this and make use of their child’s amazing gifts I find hard to pity. It’s hard for me to pity someone who has received such a vast amount of knowledge and wealth.
My daughter has helped me evolve myself in so many ways. She has taught me to view the world and its inhabitants in a different way. She has helped me slow down, while concurrently speeding me up. She has taught me that respect is not something that should be given to a select few. She has taught me countless things about patience, friendship, hard work, kindness, life, and what matters. She has also taught me that love is expressed better with actions than words. She has taught me love, immaculate.
So, knowing all of these things it is hard for me, personally, to pity someone in the same place. But, alas, no one can ever tell you what or how to feel. Your feelings are not something that anyone else should dictate. And, keep in mind, everyone likes hugs.
(Please feel free to e-mail me anytime: firstname.lastname@example.org. And I promise I won’t reply on my blog next time! Or look me up on G+: K Theriault. I also am part of an AMAZING group of Autistic adults on Facebook. If you are interested in joining let me know. They are always willing to share their wisdom with others!)