I've lost my voice.
Sort of.
No, I'm not sick. I just don't know how to say what's on my mind.
Some things have happened recently that have made me re-evaluate everything that I am and all that I am trying to accomplish. It's not necessarily bad to have your world turned upside-down now and then. It forces you to look at life from a different angle. If you keep an open mind, you learn a lot about yourself--and others.
I'm not going to go into details about what happened. It's not really important. What I will say, is that it made me consider quitting my art project. I almost stopped blogging. I began to feel irrelevant--like there was no way I could possibly make a difference.
All I have ever wanted to do with this project is show the world how I see autism: as something beautiful. Yes, it's difficult and there are days I want to throw in the towel. But there is a beautiful side too. I am not ashamed of my son and never will be. I think autistic kids (and adults) are amazing individuals who deserve to have their stories told.
When I started this, almost 2 years ago, Derek was completely non-verbal. I wanted to tell his story because HE WAS NOT ABLE TO TELL IT HIMSELF. I didn't know if he would ever be able to. And I found other kids who were unable to tell their stories either. Since then, Derek has made a lot of progress. He is speaking some. He is still unable to tell his story, but what about in a few years? Maybe he'll actually be able to write? What then? And what if I'm not telling his story (and the other kids' stories) correctly? What if, 10-15 years from now, these kids resent me for doing their portraits and wish they weren't part of this project? After all, I'm getting permission from their PARENTS, not THEM. They are all under age 18. (Most of the kids are under age 7 and are too young to really understand what I'm doing. If they are older, I TRY to make sure they know what I'm doing and I ask if they want to be involved.)
The kids in the project matter to me. I talk to their parents regularly and follow their progress. I cheer when they do something incredible and I cry when I find out they've had a hard day. They are more than just a "portrait" to me. When I make a new piece, I put my heart and soul into it. As Oscar Wilde said, "Every portrait that is painted with feeling is a portrait of the artist, not of the sitter."
What scares me the most is the thought that these kids will someday NOT want to be part of this project. What if they think that as a parent, I know NOTHING about what it's like to be autistic and think that only autistics have the right to make art about autism? I have so many questions right now. And no answers.
I never wanted to hurt anyone with this blog or with this project. All I wanted to do was tell our story. Derek's story and Tyler's story and MY story. And maybe, if I was lucky, inspire a few people and give them hope. Having my motives questioned makes me feel sick. I make art for a lot of reasons, but mostly for ME. It's how I cope with life. And why do I blog? It helps me to write down my thoughts. Having followers is a bonus. It's nice to know I'm not alone on this journey. And the comments I get help me get through the rough days. I need this.
Despite the recent setbacks (including multiple rejections from different galleries and some comments from people who made me rethink EVERYTHING), I have decided not to quit. In the past week, I was notified that I've been accepted into 2 gallery shows and I'm also going to be helping with a sensory based art activity for the Autism Society of Nebraska in July. As long as a few people still believe in me, I'm not going anywhere. (What is it they say? "The moment you are ready to quit is usually the moment right before the miracle happens. Don't Give Up.") My son is beautiful, and I love to make art about him. I hope that when Derek is older he isn't upset that I chose to make art about him. I hope he thinks I did him justice in telling his story. I hope all the kids do.
Maybe I'm naive, but I actually hope Derek will be proud to call me his mom...
I cling to hope a lot these days.
'art washes from the soul the dust of everyday life.'
ReplyDelete~pablo picaso
thank you for this post - thank you. honestly, and through our conversations. i feel the same way. those who say art 'isn't personal', have never created art...
art is the way i know how to express myself. it's who i am... who i have always been. it's how i explore my soul. the pieces i have created in response to learning that my daughter is autistic... i feel they express how beautiful she is, the hopes and dreams i have for her. and lately - well, lately i feel as if those dreams have been tarnished... as if my expressions aren't valid. so it's hard, it's hard to go into the studio - to be creative... to express my joy. for right now, my joy is absent.
i'm not trying to change the world. however, i am trying to make her world - my daughter's world - a better one. i don't think in any way my experiences as her parent... as her advocate - make me any less fit for the job, because i myself am not autistic.
however, like you - i wonder... and, i hate that i wonder.
because once you start wondering, creativity slowly begins to whither away.
Thank you. Your words mean a lot to me...don't YOU give up either. <3
DeleteBeth I feel like a lot of us have hit a wall of some sort lately...don't give up. Derek thinks you're the coolest and that's all that matters! Hugs, Cheers, love you!
ReplyDeleteThanks! Love you too. <3
DeleteBeth. Your art is Your way to share your journey with Derek. As he grows older he's not going to resent himself for you sharing your journey. He's going to say "damn, my mother loves me" and he will be able to join you on this ride. I look forward to when my boy can read my blog. I used to fear it, but now I know when the time comes he'll be able join me and give his own insight in to who he is. He can become his own self-advocate, and take over the journey then. All the parent bloggers I know struggle with this. It's your journey, write from the heart and you will never be wrong.
ReplyDeleteGood luck in your upcoming shows. Your artwork is fantastic.
Jordan @ Find My Eyes
Thanks you for the good advice. :) This journey is so different than anything I ever expected. I'm learning, day by day, how to be the best mom I can be. "Dadvocates" like you help set a good example...I love your blog.
DeleteAs an SLP you inspire me. You and Derek have taught me. You allowed me to come into your home and learn something my college degree didn't even teach me. One of your art shows was one of my first dates. Your cause meant so much to me, that I made it a priority to share with my date. I donated money to Kickstarter because I believed in you. I have your post cards framed and hanging up in my house. Your web page has 1,000 plus likes...giving up is not an option.
ReplyDeleteLook at God's art...people doubt him all the time. It doesn't make his art less beautiful or less needed. Your art is needed. It has a purpose. I doubt any of the kids will grow up to resent you, but if they do, at that point you will listen to them. Parents fight for their kids all the time, sign permission for their kids all the time. No parent is perfect but you do what you can. Babies or kids on tv, in magazines, and on billboards were put there because their parents believed in them (they are too young for their voice). They took their talents and displayed it for everyone to see. Yes, there might be a chance something goes wrong...but there is a bigger chance it will go right. Don't give up on that!
-Mindi
Thanks Mindi...your words mean more than you know.
DeleteI can tell you that I have felt the exact same way lately. There have been several moments in which I felt like walking away. I try so incredibly hard to do the best by my boy, just like all parents everywhere - special needs or NT - and yet the feedback I was getting, the impression that I was receiving, was that I could never understand my boy. I was in fear. I feared that one day my son would hate me for telling his story. I feared that he would hate me for the hours upon hours of therapy and intervention that have been a part of his life for the past two plus years. I strive to speak acceptance and beauty and reality and love about my son's journey, but my lingering fear is that all he will think as an adult is that there is no way I can understand him.
ReplyDeleteI was about to walk away for that very reason, but then I had several autistic friends tell me that I was doing right by my boy. I've had other parents reach out to me and tell me that I help change their perspective and that I bring a bit of sunshine to their days. It gave me the confidence to keep going.
I'm not a visual artist, but my medium is the written word. A long time ago, I realized that writing wasn't a choice for me, it's in my soul and I have to write. I write about my son because he is my heart and soul. I don't do it to embarrass him. I don't do it to get attention. I do it because I love him with every fiber of my being and I want to share with the world all of the beauty and inspiration that I find in him daily. I want to share him because I think he is incredible. The day that he can speak for himself and take the mantle from me, I will gladly step aside, allowing him to do so. Until that day comes, every breath I take will be devoted to making his life and his world a better place.
And you...you do that through your art. You share beauty with the world! What an amazing gift! Just as I can't stop writing, neither can you stop creating with your art and your words. I imagine that Derek will look at this one day - this project which you created for the love of him - and he will think, "My Mom's love for me is endless."
Thank you. Reading that brought tears to my eyes. Comments like yours make me want to continue. <3
DeleteHere's my two cents. I think that there are a lot of people who come at this from a lot of different angles. And giving each and every one of them the benefit of the doubt, ALL with good intentions. And each and every one of them thinks he or she knows best about the autism community, or the autism experience or raising autistic kids or whatever. And I think none of them are wrong and none of them are completely right either.
ReplyDeleteI think that when you love something and are passionate about it, then it's easy to get disheartened by people who say your approach isn't the right approach because all you really want is something GOOD.
I guess I'm sort of edging around this one. There is no one voice for this experience. You can't know what being autistic is like for him and I can't know what being autistic is like for my daughter...but we can still speak to OUR experience. And our experiences are no less important or unique or valid or genuine.
You're worried that someday he won't appreciate your speaking for him? So don't speak for him. Speak for you. Follow your heart. Do what you think is right or best. Listen to your conscience. There will always be detractors no matter how well thought out your plan, no matter how pure your purpose. I can GUARANTEE you that the world is a better place with you sharing your art and your vision than it is without you doing so REGARDLESS of how it is received.
Thanks Jim. I'll follow my heart and tell my story as a mother. :)
DeleteI do not know what happened that made you start having your doubts... I can only use my imagination. I do know that a lot has been going on in the ASD community lately with adult self-advocates becoming increasingly frustrated with being questioned, ignored, and silenced. It is an interesting situation to me - that there are individuals who become so ingrained in their beliefs, their *certainty*, that THEY are doing the right thing, that they can stomp on everyone else's attitudes and efforts if they do not match their own. It makes me sad that this happens to Autistic adults who are misunderstood by NT adults, and it makes me sad when this happens to NT parents who are misunderstood by Autistic adults AND other NT parents. Sometimes you feel like you just can't win.
ReplyDeleteI fear sometimes that my sons will later decide that I have wildly misunderstood them their entire lives, and misrepresented them. But then I let that fear go, because all I can do now is show them not just love, but respect. And I think as long as we make them feel safe and loved and *respected* then we stand a good chance of being forgiven by them later in life for whatever transgressions we are responsible for now. Ariane Zurcher writes on her regrets with her daughter often and quite eloquently in her blog, and she gets the torch sometimes from other parents as well. But her respect for all human beings in general, especially her daughter and the ASD community comes through in spades, and even though her daughter is older now and can articulate the hurt that has happened to her in the past, in her own way she manages to express great love for (And patience with!) her parents as well.
Sometimes I read comments on ASD posts and can see that there is a misunderstanding taking place in that moment between differing neurologies and I wish I could shake everyone by the shoulders and remind them to cut each other some slack. Like I said, I have no idea who got under your skin... if it was an adult on the spectrum just remember that they view the world differently and may have legitimately misunderstood your intent. And if it was some other parent, or worse, someone whose life has not been touched by ASD at all, then I say brush it off. Because those people I feel sometimes are actively *trying* to misunderstand, looking for something that "offends" them just for the opportunity to get on their soap box and judge another person. And frankly, those kind of people can stuff it.
I think what you are doing is wonderful. I think you are doing your best to grow and learn with and understand Derek. I think the respect and love you have for your children is very apparent to not just the world at large, but to them as well. I think you are an amazing printmaker and have done a great thing as an artist and an Autism mom by taking your experiences, incorporating them into your art (which IS by definition going to always be very personal), and sharing them with the world. People who are not artists have no idea the beating an exposed ego can take at the hands of everyone you submit your work to for "approval." It takes moxie to get through that kind of judgment and rejection and keep on going. And if I am sure of one thing, it is that you definitely have moxie.
Like Jim stated above, nobody is wrong and nobody is completely right either. This is pretty much true of everything, and is really the only attitude to have if you want to stay sane in my opinion. Keep doing what you are doing, more people than you probably fully realize love you and admire you dearly for it.
Thanks Katrina. :) You're right about the "exposed ego." It's hard enough to make it in the art world. Doing art about something so personal is even harder.
DeleteWe all have our gifts to share. Thank goodness there are people like you who can share for those who can't even hold the medium to the canvas! I can't paint, draw or hope to make something beautiful for people to see and enjoy. The only beauty I have "created" is my children. I don't know how to put an active link in a comment so I hope you will copy and paste this and share in something that I can do. http://www.youtube.com/watch?v=Z6l5VE1SC8I I sing... this isn't me it Cher but I hope it gives you some inspiration to continue with your gift. PEACE from the Laughter, Could be the Missing Piece mum
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