There are many blogs out there that write about parenting a special needs child, and early on, I was drawn by the beautiful and sometimes haunting writing of Varda of The Squashed Bologna: A Slice of Life In The Sandwich Generation.
She writes with honesty, like this post about her autistic son, Jacob and the growing differences between him and his twin Ethan; with great love, in this post about a special moment with her mother (this totally made me tear up); and she can bring the funny too, like this post about a hilarious conversation with Ethan.
Thanks to Varda, I’ve also ‘met’ some pretty special people who have guest posted on Varda’s weekly Special Needs Sibling Saturday series – she will tell you more about this wonderful series below.
Varda is a lovely, thoughtful and insightful writer, and I’m so glad I met her. You will be too.
At that time, a good friend of mine was blogging about children’s books and her kids’ reading habits, and I really enjoyed reading her blog. She knew I wrote, and had been encouraging me for a long time to try it, noting how simple and foolproof the process was, even for “techno-weenies” like us.
Finally, in Early February 2010 it all came together and I sat down at the computer and started my blog, calling it “The Squashed Bologna: a slice of life in the sandwich generation” because at that moment? I was feeling the epitome of the squashed meat in the middle.
2. What do you love most about blogging?
But to narrow “everything” down, I would say that for me it’s all about the connections. Connections in two directions: inwardly connecting with my deepest self when I’m writing. The act of blogging nearly every day has helped me truly to find my voice.
And then there are the outward connections: my community. Connecting with other bloggers and finding my tribe has been an incredibly positive force in my life. And it is a TRUE community, and I do consider these people (mostly women) my friends, even if we have never met; even if we never meet, ever. There is a power in the connection with other bloggers, a sense of absolute belonging and acceptance to a degree I have rarely felt before in my life (and I am generally a very connected person to start with). It is extraordinary. I am a very happy piggie.
If you twist my arm (ow!) and make me answer, I would have to go with Adrienne of No Points for Style. She is a special needs mom who is one of the bravest women I know, as well as being an incredible writer. She writes so movingly and honestly of her son’s (many, intense) issues, her blended family’s struggles, and her deep pain therein. She writes of her childhood, scarred by bullying and suicide. Some of her posts are literally breathtaking, as in I find myself gulping for air as I read them, tears streaming down my face.
4. Is there a post you regret publishing?
5. What do you love most about being a Mom?
Witnessing the blossoming of my kids personhoods as they develop. Watching them become their own people and seeing the miracle of their thoughts and opinions forming. They are not mini-me. They are their own selves. Amazing!
Also? Holding a sleeping child. My boys as infants, asleep in my arms was the most delicious thing on earth. And even now at nine, it is much less frequent but they will still sometimes fall asleep sitting in my lap watching TV at night, or leaning on my shoulder, my arm around them on the long subway ride home from a fun time.
The weight of my sleeping child, the feel of their slow sleep breathing against my chest penetrates my heart and fills it to the brim.
6. What’s your favorite time of the day?
7. If you could go anywhere in the world, where would it be and why?
8. What could you eat every single day?
9. Favorite season and why.
10. One word to describe you.
11. You are the mom of twin boys, Ethan and Jacob. Tell us a little more about them.
Their early years were marked by Ethan desperately trying to play with a brother who completely ignored him, which transformed at about age 5 into Jacob desperately trying to play with a brother who was thoroughly annoyed by and wanting no part of him.
And so I basically have TWO lonely only children in the house, instead of the twin joy I envisaged. And two completely separate kid lives to manage. They go to different schools (and always will) with their attendant disparate schedules. This is my life.
I hope and have faith that one day they will become closer and connect more. And the scattered moments they do now are magic, and I treasure them, even if it’s just a half hour of playing a loud Wii game in PJs together on a Saturday morning. Magic.
12. You host a weekly series, “Special Needs Siblings Saturdays.” Tell us more!
I thought about what I wanted to reach out to my community about and it came to me in a flash. I was struggling with the difficult relationship between my boys (see my answer to the above question) and was thinking that not enough people out there were talking about / writing about / focusing on how having a special needs child affects the other kids in the house and family dynamics as a whole. And thus the topic of my series was born.
In my post introducing Special Needs Siblings Saturdays I wrote: “That my children mostly do not get along, that it is so hard for us to function as a cohesive family unit? Is probably the single most consistent source of pain in my life. So that’s what I’m hosting a guest series about. Not what I do best, but what I do worst. Because that’s what I need to hear other voices about. I want to know how others do it, and how others don’t do it.”
The series launched this past March, and since then there have been thirty AMAZING posts written for it. There are a lot of posts about Autism and Sensory Processing Disorder because that is my world, but the special needs represented also include Cerebral Palsy, Down Syndrome, ADD/ADHD, psychiatric disorders, epilepsy/seizure disorders, genetic disorders, lead poisoning; and quite a number have multiple diagnoses.
The bloggers who have posted are mothers, fathers, sisters and brothers of people with special needs. There are siblings who love and support each other, siblings who fight and are destructive to each other, siblings who are sad, siblings who are joyful, and mostly just incredibly beautiful, moving stories of our complex, complicated families trying to figure it all out together.
Thank you Varda, for sharing your story and being here today.