So, it’s taken me three whole months to get back on board with the blog since I’ve launched and it’s been tugging and pulling at me every single solitary day. The constant blog posts that run through my head plague me. The funny and sometimes heartbreaking, but almost always monumental stories I want to share run amuck upstairs while my ADD says……I’ve got other things to do! My thoughts and commentary from the proverbial autism amusement park, that could hopefully shed some light on to the complicated roller coaster ride of our every day lives. The not knowing exactly how much of our lives to expose or the direction that this will go and what it might mean for my kids. It’s all so much. Yet I feel like I need to be doing SOMETHING. It’s a delicate mental tight rope to walk, living in a small town, and having to use a whole lot of discretion (i like saying WTF too much.) when it comes to just what exactly I can or should say that will make a difference, open some eyes, and do some good….without offending someone. Or everyone, for that matter. Other people’s lives are players in this story, from our community, to my family, to his therapist and teachers, and to my sweet circle of friends ….all whose privacy I don’t ever want to compromise. It’s hard to to tell the whole truth, nothing but the truth, so help me GOD.
Apparently, I struggle with the delicate balance between candor and restraint, which you know, can sometimes be described as “lack of filter.” Hmm…..I’m starting to come around to the idea that maybe my little apples didn’t fall far from the trees from which they fell. We just like to call a spade a spade around here, people, what can I say?
see Lack of Restraint at doctor’s office exhibit below————->
(Exhibit A: in a Loud-ish tone: “I’m NOT here for a visit. Please DON’T touch me. You destroy everything!”, says my little angel from heaven to the nurse yesterday as she walked into the room. WTF??!!)
I don’t however, struggle with humor, if that’s not abundantly obvious already or if you haven’t known me for more than 7 minutes. There’s really just no way I can write this story without it, or else it wouldn’t be ME. Or US. And the fact that my boy has his own unique, clueless, but subtle “in your face” hilarity about him is not lost on me. For not being anything CLOSE to a writer, he sure does make it easy to write about a life with autism, all colorful and messy. The clever stuff he comes up with and that incredible memory and the way he can use his scripts from books and movies in a contextually correct way…..and his crazy beautiful smile and the way he loves his big sister and overcomes so much while fighting his pervasive, debilitating anxiety…gives this grateful mama a whole lot to work with.
So I pondered if I should move forward and I watch and read and laugh and read and wholeheartedley RELATE (I could link to at least a dozen more right here right now ) to the stories of other autism parents who write and who blow me away on a daily basis with their clarity and humor. Not to mention, their sheer will to educate and advocate and just be awesome, while actually still having to be an autism parent. And I am inspired to be better. To do better. To advocate and educate and share with the world (but even more significantly, with our community) what autism can and does look like. And believe me, it’s a wild ride of a roller coaster my friends. The pull to do this is way too strong and I’m realizing that I can’t really fight it much more. This is where I need be. Telling stories about autism through writing and taking photographs. Connecting with other parents of children like Laws, because I’ll be damned if I don’t find a tribe where
we he can share a common language with others who, much like himself, just want to feel connected, accepted, and appreciated. Don’t we all want that? Doesn’t everyone deserve love and acceptance? Even though he’s only 8, the isolation of our children starts early, and my biggest fear is that he will always feel alone on the inside as he grows and matures and wants to connect and have relationships. This disability makes it a monumental feat just to learn what nonverbal gestures are (hint: EVERYTHING!) and being able to read even the nonverbal social cues that a typical 3 year old already knows doesn’t come easy, or at all in some cases. I would be like a pig in sh*t to spend the rest of my days with his sunshine-ness, and heck….maybe that’ what he’ll want to. But I doubt it. Having independence and success and happiness is just as important for autistic adults as it is for the rest of us. We have to prepare him for the days when we are no longer here to care for him, and in so doing, we have to reach out and feel our way through this maze of madness and a whole lot of AWESOME. We must stretch ourselves to limits that we had no clue we could surpass. I don’t want my little boy to feel all alone, or to be treated differently, or for people to lower their expectations just because autism is a part of who he is.
By talking and writing an
d LISTENING, not only can I promote tolerance and spread awareness to my little corner of the world, I can start to find places where Laws will want to be and will feel loved and PROTECTED. Being complicit and NOT talking, talking, talking about this struggle, I’ve come to believe is irresponsible. It’s irresponsible because the big wide world are the ones who need to know and understand just how to protect and to relate to, in some way, these amazing little bodies, who won’t remain little for very much longer. They will grow and that whole “1 in 88″ number because a tad bit overwhelming, wouldn’t you say?
So….here is where I started and is where I found the most clarity when deciding if I should do this or not. I promise to be hear more. I promise to photograph more. I promise to advocate and spread awareness in my conversations and make no apologies when doing so. Because our kids deserve it and so does our community.
“I came here, to this writing place, to spread a message with my art and with my words. This place, this blog, these images, were all waiting for a voice and apparently they found me. They just had to wait a while because you know, among other things I’m the epitome of stubborn. (and I’m no writer, that’s for sure) I had to find a place to come up for air and I think I may have found it. Right here in the late spring of 2012. Stubborn, stoic me. Or maybe, it’s just the heat.
It’s been well over 51/2 years since the word Autism grabbed a hold of the life that I thought was going to be mine and shredded, ripped, twisted, scattered, and smeared it with it’s gargantuan hands of steel, to look exactly like nothing I could had ever imagined. This project of mine, I hope, can be brought to life not only through the humorous, self deprecating, raw, and curious chronicles of our life with the disorder , but also through the powerful and engaging imagery that will help to connect the tribe of parents who have the blessing and the curse of raising a child of such mystery. I hope to tell the most powerful of these stories through my art of the photographic image. I want to give back to the community who makes it easier to live with the challenges of autism every single day. The therapist, the teachers, the friends, the other warrior moms……this if for you too. I hope to engage those who want to learn more, to embrace and to accept what autism means for many different people and to find a tribe for my son who will, no doubt have a hard time doing so for himself. I also hope to engage the opinions of those who disagree about autism. I want to question those who are in a positioned to be questioned on all sides of the autism debate, and to learn from all who are on the turbulent yet joyful journey of raising a child with autism with a message of acceptance, hope, awareness and a little bit of humor for good measure.
The Little Boy Blu chronicles will start here by going backwards. Catching up to where we are now, while simultaneously sharing updated stories, images, mishaps, hurdles, and accomplishments of Hutson Laws Savage, his sister Lily, and the restless mom who thought this would be a good idea.
Come on in, bare with me through the beginning stages, and for God’s sake…….if you get offended easily, cry at the drop of a hat, or generally don’t get dry, sarcastic humor you’re in luck. You see, I learned a while ago that everyone will have an opinion depending on their life circumstances and as luck would have it there are likely 45276 OTHER blogs that you will enjoy a whole lot more than this one. I am a MOM first, and if you don’t know what THAT can sometimes mean in the written, spoken, or unspoken word, then I’m not entirely sure I can help. I will not always be right in my commentary or story telling. I am not an editor or a writer. I run lunches and sometimes interference to two different schools, I take cool photographs, and in case you haven’t noticed……I’m swamped.”
I wanted to say publicly that I’m so thankful for all of the comments here and email and on Facebook and Twitter and Instagram, whether public or private messages…affirming when I started this a few months ago that this is ALL GOOD. I had the pleasure of sitting with a medical student yesterday to just TALK about autism and what is has meant for our family. It felt really good to sit with a future medical professional without being judged or patronized about my views on autism and was another opportunity to do my part for this community. He seemed genuinely interested, which gave me hope that our young doctors’ education might be radically changing (it better be. for everyone’s sake. can i say 1 IN 88 my friend? we need to move past a lot of the old ways of thinking about this disorder. in case no one has noticed.) and will begin to embrace a range of therapies and education modalities, and medical and biomedical treatments, depending on the child. It was another affirmation that I should be promoting and shouting from the mountaintops (or levees and hills, as it stands now) about understanding and awareness in whatever way I can. I hope that he learned just a little from my voice, one that I’ve had to find and find and find again, but one that I hope will begin to feel like it’s doing some good. I’m anxious to be able to share with others what autism looks like in OUR lives, knowing that it’s different for every single family who knows what it means to live with and love someone with autism.
Please come and join (and Like it, if you will!) me on A LITTLE BOY BLU’S FACEBOOK PAGE and TWITTER FEED, where I post about our daily laughs and struggles and link to interesting articles and blog posts from other parents…and lots of photos of my little boy blu and his hero sister too! Eventually, you will ALL know, work with, or love someone with autism and I would love for you to feel confident in knowing that it only takes a little bit to make a real big difference in the life of someone on the spectrum.