Mama on the Edge – an Interview with Queen Mara!

She’s irreverant – she’s hilarious – and she is surviving while raising two sons on the Autism spectrum. As the mother of four teenagers myself, Mama Mara is my hero!

Tell me a little about yourself and your family.

Most people in Blogland know me as Mama Mara, or Queen Mara for those of a monarchic sensibility. I am a 44-year-old divorced mother of two teenaged boys on the autism spectrum: (almost) 16-year-old Rocky, a gentle giant whose obsessive interest in movies is eclipsed only by his dedication to mastering the art of self-pleasure; and 12-year-old Taz, a whirling dervish of destruction and debauchery and star of my blog’s classic fairy tale, Once Upon a Lithium.

Tell me more about children’s disabilities. Did you know when they were born that they had disabilities. If not, how did you feel when you discovered it?

Rocky is your classic high-functioning “autist”, his difficulties with motor skills, language, and social interaction straight out of the DSM-IV. When he was diagnosed at age 3-1/2, I was two weeks pregnant with his brother, Taz, and completely overwhelmed.

I clung to the idea that Taz was absolutely neurotypical. He was so different from his big brother – so social, so physically adept – that I wrote off his lags in communication and other developmental areas as “normal-ish” for a typical boy. But all that changed in kindergarten, when he began to have seizures and violent rages. His diagnostic listing is long: he has epilepsy, PDD, ADHD, a significant cognitive impairment (probably caused by the seizures) and as-yet-undiagnosed mental health issues. Nothing I learned from parenting Rocky helps me in parenting Taz. They ARE the autism spectrum in my home.

You blog a lot about your children’s issues, and that is so valuable to me and I’m sure, to others that read your blog. How did you go about making the decision to blog about them? What do you personally get out of blogging about them and their issues?

I was a latecomer to the Blogosphere. But this past summer, life got rough at Mama Mara’s. Taz’s meltdowns were intensifying, Rocky was refusing to leave the house, The Talking Turd (aka ex-husband) was driving me insane, and I felt utterly alone. I thought maybe I’d find an online support group, and somehow Google led me to my first autism blog. I was hooked! And within weeks, I found that I wanted to do more than observe blogging from the sidelines. I wanted to write: to vent, to share my ups and downs, to document this wild ride life is taking me on, and to build the support group I’d been looking for. Blogging is the best thing I’ve ever done for myself.

How have your children’s disabilities affected you as a person and as a mother? What did you do right? What do you wish you had done differently?

Having kids with disabilities can’t help but change a person. My (shifted) priorities, my (deferred) personal goals, my (widening) sources of strength and joy, my (expanding) pants size – all are affected. I don’t think anyone does anything “right” or “wrong” when it comes to parenting children with disabilities. We all just do the best we can, and that’s more than enough.

What do you want other parents to know?

We are all on very different, yet very similar paths in our effort to make a good life and better world for our special-needs kids. Blogs are a great way for us to take our journey together. And I hope that if you take part of that trip with me, you’ll laugh your @ss off along the way.

Be sure to visit Mama Mara at her blog, Mama On The Edge. Trust me, it will be the highlight of your day!

Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.

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