This is me, the one usually behind the camera trying to capture and share Autistic Interpretations. In case you were wondering, I suffer from chronic thinking and seriousness – since birth I think. My friend tells me I was born old.
Autistic Interpretations is how Jessica expresses herself and how I interpret Jessica to the world. It is what our own version of autism looks like. My goal with blogging has always been to share awareness of why Autism is called a Spectrum, and also to share what dependent ADULT autism can look like.
IN THE NEWS
There is a reason why I got behind the camera to capture autistic moments to interpret to the world.
If you search for news articles or social media spotlights about autism, you can find them. Those articles are definitely out there. Many groups, foundations, parents, etc., promote Autism Awareness. When I first started looking, what I found the most were:
- Stories related to children – diagnosis of children, therapy for children, workshops for parents of children, etc.
- Stories related to Aspergers – Individuals that have been diagnosed with Aspergers are becoming visible self-advocates. They want their voices heard. Many are integrating into the workforce quite successfully, and many others are working towards getting there.
A lot has been happening in the world of Aspergers, though I don’t know much about it. Aspergers is not the autism that I know. Not anywhere close. I am not an autism expert, I am a Jessica expert.
I got weary of NOT finding news stories, social media spotlights, etc., on dependent autism as it related to aging out of high school, and consequently disappearing into the abyss that is the real world. What about stories of those young adults getting lost in the system, about the lack of available services, not to mention a lack of money? Those were the issues that I could relate to.
That is where we were really struggling when I began my blog in 2015.
THERE NEEDS TO BE A BETTER BALANCE
What is happening to dependent autistics when they grow up? Where are they? Do they just go away? No longer exist? Are they invisible?
What about the parents of those individuals? Is there anyone else out there like me who had to give up their job to stay home with their now adult child? Where are the other parents that had to completely give up their financial security with no chance at saving for a ‘retirement’ that will never come?
SURELY I AM NOT ALONE IN THIS
For a long while, I was convinced that I was standing alone in this world of dependent autism/multiple disabilities. Most of Jessica’s life, I felt there was no one that understood, no one that really knew what it was like, including family and other special needs parents that I knew from school. Jessica’s combination of disabilities is rare and unique.
ONCE UPON A TIME I WROTE A POST ABOUT BEING A LONER
In that post, titled Being A Loner, I discussed understanding why special needs parents might not seek social outings, social groups, and support systems. When Jess was a child, there was no ‘social media’ to reach through. At the time I wrote the post, I had still not utilized social media to connect to other people in similar situations. My doubts were still strong that there was anyone else out there that could relate to my everyday life and struggles. Plus, I didn’t need others – since I was a loner, and all that.
I WAS WRONG
My blogging and photo journey has taken me many places outside of my comfort zone; the biggest one being sharing our life with the public. To have a successful blog, I needed to reach out into social media world and have a presence. Networking – one thing that in real life fills me with anxiety and dread. So I did. I reached out for that reason only – successful blogging.
Two years later…an epiphany! My favorite blogger, Kate from Finding Cooper’s Voice, shared the following quote recently, “Surround yourself with people who get it.“ Why did it take me this long to understand? There ARE others that get it, others who understand what it’s like to live this life of 24/7 stressful caregiving for eternity.
After all these years of being a loner, I found a social media place I truly enjoy. Most of all, I found a place where other parents understand the intricate combination of 24/7 stress, difficulties, undying love and immense joy. It is a place where we know it’s okay to find the humor and laugh at the tough stuff.
BECAUSE I CAPTURE AND SHARE AUTISTIC INTERPRETATIONS
I have found ‘my people’ and I am loving it. Look Me Up On Instagram @autisticinterpretations for it is there that I share the most photos and videos.
SHORTLINK: http://wp.me/p5DUsf-1kO
So glad that our paths crossed Valerie! I love your blogs and content, undoubtedly it has enormous depth, but one thing that is most impressive is the value of width and ability to reach and inspire so many people! Thank you for providing a service to the world that really matters!
Thank you, Thomas. I appreciate your kind words and encouragement, for encouragement is always needed. Knowing that others find value in what I share helps give me the push I need to keep writing and sharing. You are truly a kind person and I’m glad we crossed paths as well.
No one can begin to understand. No one. Unless you live it, there is no way to fully appreciate how it consumes your world. Yes, it’s become my “normal” but there are days… Thank you for being vulnerable enough to put your life and sweet girl out there. Her story needs to be seen and heard. XO
Thanks Jayne. You are right, only if you live it. Actually, it’s another one of those things where once you accept that fact, then it makes it just a little bit easier that almost no one gets it, even if they think they do. hugs to you my friend!