You have a child with special needs. Things have settled down. You are getting into your groove. And you are starting to think – I want to start a project. Or, I want to work. Or, I want to do some of the things that I used to do that made me happy, like crochet a blanket or write a computer program or draw or paint or whatever it is that you do. But things are different now. Your whole life is different. How is this going to work when your attention is in demand so much and so often?
This is the spot that I was in last fall, when I decided that I wanted to start this blog. And, today, more than ten weeks ahead of schedule, I am writing this – my ONE HUNDREDTH BLOG POST. As I reflect back on how this came to fruition, I see the similarities and differences in how this happened compared to how it would have gone in the past.
I had wanted to start a blog for YEARS. But I kept putting it off because of one thing – technology. I have always been behind the technology curve. It wasn’t, and isn’t, my strong suit. But writing has always come easy to me. In fact, it only takes me maybe 10-20 minutes to write a blog post. Publishing it and posting it on social media can take up to an hour sometimes. And, if I decide that I want to change the color of the background of my blog? That could take me HOURS to figure out.
But then, a MUCH YOUNGER former colleague started a lifestyle blog. And I looked at it and I thought COME ON!!! YOU CAN DO THIS TOO!!! IF SHE CAN FIGURE IT OUT, YOU CAN FIGURE IT OUT. The blog was fabulous, because, of course, she is fabulous.
So, I did it. I began.
I don’t have Microsoft Word on my computer. So everything that I have written, that’s right, 100 posts, have all been on WORDPAD. Which means there is no spell check. Which means, if I don’t catch the error, the error will appear on the blog. Why haven’t I gotten Word? Because then I would have to figure out how to install it. So, I keep avoiding it.
My blog isn’t configured the way I want it to be. It is not as user friendly as it could be. It is not easy to see that there are 100 posts. I need to change the format. But this requires endless hours of research. And so, for now, it remains as is.
It is NOT perfect. BUT I DID IT!!!
I wanted to support other caregivers. I wanted to let them know that they are not alone on a journey that feels deeply personal and specific to them and LONELY.
So, how did I make this happen while living the special needs life?
If you think back to before you were a special needs caregiver, when you started a project you may have structured it during “normal” hours. You may have given yourself a “reasonable” amount of time to get the project done. You may have structured time periods into your day for undisturbed work time. It might have had a few bumps in the road but mostly have gone smoothly. This was how I used to do things.
Let me tell you right now, that this journey did NOT look anything like what I described above.
My husband was an incredible support as I researched how to begin. This included looking at books written for dummies and idiots, asking friends and researching online. And, when all else failed (and it often did), my husband would look at YouTube and tell me how other people were doing what I wanted to do. Except, if the YouTube post was a certain age or older, the technology that they used was obsolete. Or updated. Or different. Or something.
It was incredibly frustrating. As I continued to plug away at figuring out just how to START, there were many moments of self-doubt, something that I had not struggled with in the past. But I hadn’t slept through the night more than a handful of times in years, I was endlessly distracted by being a special needs caregiver, plus a mother to typical children, plus my husband was sick, plus my mother had passed away from Alzheimer’s disease in 2014, plus at one point we were homeless, plus, plus, plus… I wasn’t the same person that I used to be.
Guess what? Once again, like when you are living the special needs life and get thrown a curve ball, I established my new normal. Again.
Where before I would sit down to a project and get it done in what I considered a reasonable amount of time, now I had to do it in short blocks of time. Also, the amount of time allotted for something to get done needed to be longer. I needed to take into consideration that when I am writing or publishing or posting on social media that I may have to stop about every two to seven minutes and clap for SuperWhy. And, because my son loves repetition, I may have to literally do this TWO HUNDRED TIMES. For the exact same part of the show that my son loves to reset his tablet to (and how proud am I that my son can OPERATE his tablet? But that’s another post).
Work hours? There were a couple of months where my son woke up every single day at 2 AM. And he got me up. For the day. So after settling him in with some milk, guess what I was doing at 2:10 AM? That’s right. Writing. Worried about me being exhausted? I slept. At 1 PM, while he was at school. Too tired from the early start to work then.
I set myself a goal of 100 blog posts in one year. I figured that there would be times where I was on fire and would write every day. And that there would be other times where I couldn’t put a word on a page. I think my former self would have doubled that number. But that would have set my current self up to fail because now my life was structured differently and caregiving comes above all else. Don’t I sound like twins? When I post this, as you are reading this, my goal has been met. About ten weeks early. I set a goal that I could reach.
Where in my former way of life I would have sped balls to the wall toward my goal, in this incarnation of me, I would burn out so much faster. There is only so much of me available after my most important job, caring for my son and family. I need to budget what’s left of me so that I can sustain the project over time.
This has been an incredible learning experience for me. To know, firsthand, that we can reinvent ourselves at any age is incredibly empowering. I wanted to create a safe place for our community, the caregivers of those we love most in the world, to see themselves. To see that yes, what others are experiencing are specific to each situation, but there are also lots of similarities, especially in the caregiver experience.
We are not alone. We have each other.
I am honored every time you come to the blog, every time you read what I’ve posted, every time you engage in the ongoing conversation. Thank you so much for being here and doing this with me.
Here’s to the next hundred blog posts!
Coming soon: THE BOOK!!!!!!!!!!!! A book for the new special needs caregiver. Because no one handed me one when I first started on this path. I am hoping this will be the book that I wish someone had handed me.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!