A Blessing or A Curse

I rewrote and submitted my Waging War post for the Huffington Post.  They changed some of the tenses (I hate when they do that) and published it last night – click here.  Someone commented, “It is great that you come to the realizatio­n that you can accept your child for who she is. However, I know very few parents of autistic children who confuse their children with their children’s disorder — whether or not they wage a war against autism. Children are blessings, autism is a curse.”

That comment made me think about how difficult it has been, for me anyway, to separate Emma from her autism.   I have always loved my daughter.  I have not loved her autism.  Even now, that concept continues to evolve.  I accept that this is how things are, I accept that she has autism, I accept that because she has autism there are many, many things we must do to support and help her.  I accept that there are things that will take much, much longer for her to  learn and other things that she comes to with no trouble at all.  I accept that who she is has as much to do with the autism piece as it does the Emma piece, that in fact the two are not separate.

Any parent with a child on the spectrum has wondered what their child would have been like had they not had autism.  Would she still have near perfect pitch?  Would she still have an amazing memory, the sort of memory that remembers specific people, places and events when she was two years old?  What sorts of things would she like doing?  Presumably her favored activities: the carousel, the zoo, The American Natural History Museum and FAO Schwartz would have worn out their welcome by now.  Would she still fear dogs?  Would she be the sort of child who had many friends or just a few very close friends?  What classes would she excel in?  What subjects would captivate her?  Where does the autism end and Emma start?  Can we really do that?  Can we really separate the two?  Emma’s autism informs every aspect of her life.  And yes, she is a blessing.  Exactly as she is, with autism or without it.

Nic & Em at the Metropolitan Museum of Art

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

5 responses to “A Blessing or A Curse

  1. I’ve started reading your entries two days ago. I love your opinions, I love your thoughts about Emma and autism. I’m a mother of an autistic child. He is nearly four. And just like you, I scoured the net for every possible cure. I wasn’t going to let this defeat me. Never. And no I’m not going to ever accept this “autism”. I can care less about what other parents say. I’m not going to give up. Because just accepting means giving up, giving up on my child. And it’s not in me to do that. I look deep into his blue beautiful eyes and I see wisdom. Wisdom beyond his years. He is non verbal but communicates through pecs, most of the time. Is he ever going to be like his twin? I’m not sure nor do I want him to be. I just want him to be independent. I want him to be the best he can be. Am I selfish to think this way? Maybe but in this point in time I think my selfishness will help provide a better future for him. And just like your Em my T is quirky and I love it. I love everything about him. I love him so much that my heart aches, literally aches. So no, don’t ever give up. Ever. And from what I have read so far from your story, you haven’t given up, and Emma is flourishing. Flourishing into a beautiful young lady. Maybe not in the pace you wanted her to, but she is. And I know you are one proud mother.

    I’ve seen cancer take away my precious parents. My father, that strong happy man was gone within 6 weeks of his diagnosis. He entered the hospital with his two feet only to leave it in a coffin. I was pregnant with my twins then. It was a disastrous time for me and my whole family. Then my mother got diagnosed with a rare type of leukemia while the boys were 2 weeks old. And we fought for her life. But she too was gone. So no I’m not going to let things be. I never will…

    • As you may have noticed this post was written a year and a half ago and since the writing of it, so much has change. Perhaps most radically has been my own progress with all of this. If you look at more current posts, you will see that since writing this post, I have met and become close to a great many people who are Autistic. Some speak, some do not, some speak a little, but not comfortably, preferring to communicate through typing. Many of them have become good friends, people who visit us and whom we have plans to visit and stay with, people who I look forward to being with and spending time with. People who have changed my life and everything I thought I knew or believed have caused me to first question all of that and later have shown me, taught me a different way of thinking about autism and what that means to them, what it means to me, what it means for my daughter. Because of these people I learned about how I can support my daughter in typing to communicate and how she is able to communicate things to me through typing that I was astounded by, continue to be surprised by, though no longer astounded, perhaps, but we are learning that our daughter is capable of so much more than we had once assumed.
      All of this is turning out to be a series of astonishing moments, moments that together has created a monumental shift in all my thinking. It is fair to say that acceptance does not go nearly far enough. I have gone from writing a post such as this one that you have commented on, to celebrating every aspect of my child and appreciating her entirely and completely. This one sentence that I wrote, “Would I remove the autism piece if I could? I had assumed that went without saying, of course I would” continues to haunt me, (and as a result I’ve removed those two sentences from the post) as I now hear those words differently. I hear what they sound like to those who are Autistic. I hear that the wording is not what I mean. What I would remove is not the autism, but the things that make this world so very difficult to navigate, and those things are less about “autism” and more about how we as a society exclude, our intolerance for those who are even a little different, the way we do not accommodate, the way we shame and hurt those who do not fall into line. That is what I would change, if I had the power to. One blog post at a time… that is what I hope I might help people think about, even if just a little.

      • justanothermom

        Yes I did continue reading your posts and yes I did see the profound change in your understanding to autism and everything else. I spent all last night ( the only me time I have :)) reading and reading the posts you recommended from the autism society. If I say I’m blown away, I wouldn’t be doing justice to what I have read. These people amaze me. Amaze me in a manner I cannot put into words. And for that I want to thank you. For if I haven’t stumbled on your blog, I wouldn’t have entered the brilliant minds of these people. These geniuses. I know from my son that he is smart in his own special way. And I whisper that to him every single day. Because he is. They all are.
        I am today where you were at last year. And all the years before that, for my journey is a new one. And like everything else, it takes many trials to reach at a point where one is convinced that there is really no cure. You have done more than I have done with my T. I stumbled upon your blog while researching for stem cell therapy. But in all retrospect you have opened more doors for me than you can imagine and shortened my anguish. I may not have reached that total satisfaction yet but with time and with reading other blogs I know I will. And it’s people like you that are making the difference by making us aware of let’s call it the other side. And maybe just maybe one day when I take my boys to the mall or to the grocery store I won’t witness the dirty looks that people give my son. And the way they immediately pull their own little ones far away from him as if he is the plague because he babbles loud and squeals when he is happy. Yeah maybe just maybe one day I won’t ever get to hear them whisper about him that he isn’t “normal”. He is just a child. A child for gods sake. Sorry but every time I think about it, it not just angers me but saddens me to see the society we live in.

        And your posts also made me close the doors I was about to embark upon. Yes no two people are the same but I too tried the GFCF diet and it was terrible. I too have started him on ABA and even though I saw fantastic changes in him, he lost part of that happy boy that he was. T is a very happy go lucky boy. And when I did the intensive ABA things changed. One of the consultants that I have working with him in her “PLAY Project” research saw the down side and so did I. His connection with me diminished and it was heart wrenching. I immediately took myself out of the sessions and reduced the hours dramatically. And slowly he came back. It was astonishing to witness the change. I don’t want this to be long as it has already, I just want to say thank you. Thank you for opening my eye sooner than later. Thank you. And I will continue reading your posts. Can’t wait to reach the more recent ones. I’m OCD like that. I have to start from the beginning to reach the end…

        Much respect goes out to you and your family

        Mina

        • Dear Mina,
          This comment from you came at a particularly rough time. A time when I have been thinking that perhaps I wouldn’t keep blogging, that what did any of it really matter? And then you left this for me and it was a gift of encouragement and kindness. After reading what you’ve written I know I will continue, because even if just one person’s pain is alleviated even just a little, it gives me hope for more. So thank you, Mina. You couldn’t possibly know that your writing would have such a great affect, but it has. I have not written a post in a week, the longest stretch I’ve gone since beginning this blog, but now I will post on Monday, and continue. So glad you feel my writing has helped. You have no idea how happy that makes me…

  2. justanothermom

    You are kidding me right? Don’t ever stop writing! Ever. Ariane I cannot tell you how in those few days from the time I started reading your posts to finally today reaching your last entry (woohoo) did to me. Less than ten days ago a good friend of mine who also has an autistic son sent me a link to a blog of a parent describing how at peace she is now because she has finally accepted her son, accepted his autism. Those words just put me off reading the whole entry. And I immediately replied to my friend and said that as much as I respect that mother’s point of view as much as I, Mina will never accept my son’s autism to defeat me. That was ten days ago. But you Ariane, you changed all that. I read Julia’s account of “quiet hands” and my heart just constricted. I couldn’t breathe. Those are the exact words they use at my son’s school. I myself never use these words nor do I ever ever stop his hands from flapping when he is super excited NEVER. That, just reading that made me understand so many things. Made me realize how foolish I was alllllll this time. In the past few months I was running like a headless chicken or that’s how I felt I was. I was desperate. I was sad. And it loomed on me I was depressed. I started googling autism miracles, autism healers anything that could provide an answer to my anguish. I just wanted anything. And then I met someone through a friend who does long distance healing. We became more than acquaintances and she did a reading for me. Then we spoke over the phone, and she asked me to close my eyes and tell her how I see myself. My exact words were ” I feel I am running a non ending marathon. A marathon against time. I keep running towards that finish line but I can’t seem to reach it and I’m gasping. Gasping for air. I feel suffocated.” She then told me “Mina, there is so much time. You have time to finish that marathon but instead of running, you have to enjoy the moment. Breathe the moment. Live the moment. Love the moment” and oddly enough I was a firm believer of all that, but somehow somewhere along my quest of a cure I lost the moment. But you, you brought that back to me. You, Julia,ib and everyone else that you mentioned. I used to blog. A looong loong time ago. I was working in Baghdad during the war and I was blogging about what really was happening to my country. My blog was featured in the huffington post, in the Chicago tribune on the bbc. I had podcasts and interviews. That part of my life was awesome because my passion was to write.

    After I lost my parents and then I found out about my son I stopped. I couldn’t write anymore. But last year I started a new blog and again I stopped. My mind was paralyzed. I felt numb. I felt nothing. I can tell you, whole heartedly, that your posts and my friend who reminded me to enjoy the moment, made me feel more alive than I was those past few months. So no Ariane, you ARE making a difference. A huge one. And to you I am forever grateful…

    With much love and respect

    Mina

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