Loners out there – I understand
I am a loner. I understand not seeking out social outings, social groups, and support systems.
Today I was reflecting on something I read about on another autism blog. A pep talk to self – “you’ve got this”. Positive self-talk is important and useful. It can rewrite your internal script, give a confidence boost and decrease stress (which leads to being healthier).
I realized that I don’t remember giving myself positive pep-talks while raising my children and going through my educational journey with Jess. All I can remember is the push to get through each day. I remember it being exhausting. My favorite part of each day was putting the kids to bed as early as possible so that I could go to bed and go to sleep. That was my survival mechanism.
In today’s world of social media and blogs, knowledge and support is just a click away. Autism moms can quickly find each other and share support and encouragement. Maybe it helps them feel a little less alone on their journey. They learn that there are others out there that understand the everyday challenges autism families face. I had to ask myself, “why don’t I do that? Why have I never reached out? Is it simply because I am a loner?”
My first inclination is to say I don’t need that now. Why would I say such a thing? Conceited? No. An expert? Hell no. Got it all figured out? Not really, but I’ve made excellent progress – with my OWN situation. And I got where I am by stubbornly pushing onward, fighting through, because there was no alternative.
But, is there more to me not reaching out than that? Yes, I think so. Jess was born in 1987. Consider this timeline:
1987 -“Autism disorder” became a diagnosis and the first study was published connecting intensive behavior therapy and autism. Therapy of 20-40 hrs per week would become available on the Pacific coast for about $50,000 a year.
1988 – “Rain Man” was released – increasing public awareness of autism. Why a movie to introduce public to autism? Because in 1988 there was no public world wide web. No blogs, and… ‘gasp’… no Facebook.
1991 -Al Gore Creates Bill to Fund “Information Superhighway”; World Wide Web Opens to Public; autism because a special education category; public schools begin identifying children on the spectrum and offering them special services.
2006 – Jess turned 19; Facebook became available to those with a valid email address.
The point is, when Jess was growing up, the world was a very different place. She was so different from anyone we ever met. We attended an autism support group once. It felt weird. We felt out-of-place. We never went back.
Actually, pretty much all social groups felt weird to me. My life was so intensely different from those of my peers. I had difficulty connecting to people. I couldn’t relate to a ‘normal’ life. Even with social groups revolving around my two typical children, I felt like I did not belong because I felt like no one could possibly understand the stress I lived under, the restrictions that I had on me, and how happy and special every day occurrences were all diminished or invisible to me.
I never tried to explain, I did not want it to sound like a complaint nor an excuse. No one ever excluded me, I did that to myself. I was more comfortable alone. But that doesn’t mean that I wasn’t lonely. I was terribly lonely for many many years. But it was still my choice. It was the path of least resistance; the easiest.
Thus, a loner. Was I always a loner? Or was it my circumstances after Jess was born that led to me choosing isolation? Maybe both.
However, I am no longer lonely. I feel content. I have seemed to have finally made it through the hardest parts of Jessica’s Journey. I still don’t reach out much to other people and I have not utilized the internet to connect to other people in similar situations. But, I finally feel like it’s possible that my family, friends, and neighbors understand where I’ve been and what I’ve been through.
Ironically, the thing that has finally let me have a voice and open my world up is writing this blog, (something I can do without having to worry about fitting into a group…lol)
I smiled when I read this. Early on, when I was laser beam focused on “recovering” my child, I, along with another family, founded a FEAT chapter in Chattanooga. We were the first family to embark upon intensive ABA with CARD out of Los Angeles. I read “The ME Book” and Catherine Maurice’s “Let Me Hear Your Voice” over and over again. Nothing less than eradicating autism, and getting our child back was on my radar. I think that early on, I had to go through all that to survive. It was not until he turned 6 and was no where near ready for a typical first grade classroom without supports, that my world crashed down around me. I had failed him… miserably. I sought counseling and came to terms with the fact that autism would always be a part of Sam and a part of our lives, and so, we finally were able to go about the business of living, and I fully withdrew from any and all “support groups” and such. When people ask me if I could talk to a parent of a newly diagnosed child, I cringe inwardly, as I know they really don’t want to talk to me. I will burst their bubble long before they are able to reconcile what this diagnosis will always mean for them. Had I not been so focused way back when, I don’t feel Sam would have made the gains he made, but I quit trying to “fix” things long ago. I rarely share with anyone, but family and very close friends, the crappy parts of this. I tend to rage and shed the tears alone these days. Just getting it out helps and then I can dust myself off and enjoy a new day. All this to say, you are definitely not alone my friend. XO
Jayne, thank you so much for sharing that!! It means a lot to me to know those things about you. You do always have a smile on your face and a positive attitude, meaning a good job hiding the crappy. Guess I’m that way too. All those times people talk about how I handle all of this so well, it’s just the part they see.
I agree that the early on intensity is completely necessary. We have to know that we gave it our all and tried everything, otherwise we would never find that acceptance. And, our kids wouldn’t have made the gains they did.
Although I avoid support groups and reaching out, it could be supposed that I could help someone else. But, like you, I’m very hesitant to share the reality. Maybe those parents don’t need to know that too soon. Maybe they need to try to beat the odds first.
I have reached a level of complacency in my life that I never have before, and I’m relishing it while I can! 🙂
The path of least resistance can, at times, be a lovely walk. ❤️
Oh yes, at least for a little while.