This week, I had the pleasure of interviewing Alisa Rock of Rockautismexperience.com Her blog
is edgy, well written, sometimes humorous and always thought provoking. I hope that you all take the time to go on over and check her out.
1) First things first. Tell us a bit about yourself...who you are, what you do..what is your biggest personal dream..what's the absolute silliest thing you have ever done..likes, dislikes..guilty pleasures.
I am 41 years old, have a 12 year old with autism and a typical 9 year old who seems to be developing a bit of an anxiety disorder (not surprisingly). I am a stay at home mom married to a retired banker. We live in Baltimore, MD. I am on the board of a nonprofit here in Maryland, Pathfinders for Autism (pathfindersforautism.org is the link). Pathfinders was started by a group including former Major League Orioles baseball athlete B.J. Surhoff and his wife, Polly Surhoff (herself an Olympic caliber swimmer), and operates a free referral and resource center. I was President of the Board of Pathfinders for two years. Thankfully B.J. has taken over!
I have an M.B.A. with a specialty in Strategic Planning from Johns Hopkins University and for undergraduate, went to Western Maryland College (now McDaniel) and graduated cum laude in 1991 with a B.A. in English and and minor in Writing. I have worked in finance, publishing, and most recently, in nonprofit development, i.e. fundraising.
I'm sorry, I have given up my personal dreams over the years after coping with my son's diagnosis and the ensuing travails. I don't have any personal dream. It's easier that way. My greatest desire right now is to visit Paris. I'm not sure why, but that city intrigues me. If I am unable to travel anywhere else, I will go to Paris.
I like Pinot Noir, cheese, dinner out with my closest girlfriends, shopping at Target, and I LOVE to read. Murder mystery thrillers are my guilty pleasure, and I have recently discovered Jo Nesbo, a Norwegian author I would highly recommend. Laura Lippman is excellent, too, all her books are based in Baltimore.
The silliest thing I ever did was to marry a divorcee eleven years my senior, and it was the best thing I ever did. He told me he was sterile (it led to the demise of his first marriage) and two children later, I still tease him about this. (He claims I'm "uber fertile". I guess I can't deny this. The proof is in the pudding, I mean, the boys.)
2) Why did you start blogging? Your blogging/writing is different now than when you started. Is the reasoning behind your blogging different now than when you first started? I asked the above for this reason. In your first posts (back in 2004) Your posts seem more about things you were trying/using to help your boy.
I started the blog initially to communicate with family and with friends that I don't see very often. It was also supposed to help me track what we were doing with our son. We did biomedical interventions, as well as behavioral interventions and a home-based academic program. Additionally, I was overwhelmed with working a full time job trying to raise money for a nonprofit that sends Baltimore City public school students to college, and so I didn't keep up with it very much.
When the recession hit, I decided to stop working for the nonprofit (at that point I had cut back to part time) to focus on my writing. Unfortunately, I got quite ill with some stomach thing, and that put me out of commission for a good year. Lost twelve pounds and spent most of my time in the bathroom. Andcanceled the trip to Paris. Le sigh. My son was finally stable and the blog was sort of on the back burner.
Finally, felt better (thank god for gluten-free), and, wham, Conor's behaviors went off the charts (they still are). At this point, I started a personal Facebook page. An old high school friend that I barely remembered remarked that I complained a lot about spending time with my children, and that maybe I should spend MORE time with them. We had five feet of snow that year. (Keep in mind that my son had been schooled in my home for six years; I spent more time with him than most parents spend with their typical children. She had no idea.)
I immediately un-friended the high school friend that I barely remembered, but I began wondering... why IS it so hard to raise a child with autism? What AM I complaining about, and why? And thus, I began blogging more frequently, trying to answer this question for myself, my friends, my family... and for the random reader.
Everything I read, I feel like it doesn't sufficiently explain the complex, complicated lives parents of children with autism lead. Especially for those of us whose children are on the more affected end of the spectrum. (My son has "moderate" autism, which I don't need to explain to you doesn't mean he has Aspergers or HFA. He's pretty disabled. Yes, disabled, not "differently-abled.")
I was NOT expecting my son to have to go inpatient for his severe behavior. But this is the journey autism takes us on.
3) I saw a difference in your writing from then till now.. I noticed a clear divide..not so much in emotion-but in how you are facing the challenges of raising a son with disabilities. One post that very much moved me was written on 8/19/09.. you wrote-
"I have come to love you
as you are
not as I thought
you would be"What brought about this piece?
The poem... I think I reached the point where I accepted that I was not going to cure my son. I'm no quack... I wanted to be in the 47% of the Lovaas study and dove into ABA. But it's not that simple I guess. We've tried everything, ABA, RDI, biomedical, horseback riding, craniosacral...
4) Your writing is very real, raw-and sometimes difficult to read because of the depth of emotion in it. In other words you do not sugar coat anything-BUT at the same time, your absolute love and passion for your son shines through.
You are correct, I do not want to sugar coat this. Raising a child with autism is difficult, it is challenging, it is heart-wrenching. I read blogs, and as I said in one of my posts, they're all hug hug hug and I'm all fight fight fight. There have GOT to be parents out there like me, who love their children with all their hearts but that are struggling... financially, emotionally, and even physically.Who speaks up for these families? Who communicates why public and private funding is so important? Who else wants to let parents of typical children understand why it's important for our communities to support these families? We won't get anywhere advocating for more funding if people don't really, truly understand what the challenges entail.What is the future for these families? Our loved ones? Because despite the challenges they present us with, we still love them, deeply and passionately. But there I go, preaching again. As my roommate from college would say, preach it, sister. And so I try. I try.