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Friday, November 16, 2012


This is ridiculous. I started this blog filled with idealism and motivation, brimming with incredible material to write and discuss. I tinkered with the blog setup and different affiliate programs and links and whatnot. I spent tons of time - time I don't have - networking across the blogosphere with other Autism Mom blogs, with very disappointing returns. The project I was so excited about, which started off with a bang, feels like it fizzled out too soon. I'm not thrilled.

Because on top of my inability to spread the good word about this fantastic new blog, I found myself suddenly with no time to write new posts. And if there's no new content, a blog is worth about as much as last year's snow.

Being an autism parent is a full time job. Aside from dealing with the usual stuff - the mess, the stress, and the distress - there is just so much work to do. Here's just a partial list of what I've been busy with all week:

  • COMMUNITY HAB BILLING. The end-of-the-month paperwork is confusing and tedious, and since I have about four different community hab girls, that means tons of paperwork for all of them. I help them out with it,  especially in the beginning, and it takes a lot of concentration and writing. So I was busy with that all evening yesterday.
  • DOVI'S MEDICAL APPOINTMENT(S). I am blessed beyond words to have snagged a much-coveted, long-awaited appointment with an incredible, second-to-none child psychiatrist who specializes in autism. That meant 13 pages of paperwork to fill out. They also want copies of his IEP, ISP, and medical form. Which necessitated searching through mountains of jumbled reports to sort out the ones I need, and take them to a copy store. Which I haven't done yet.  It also means arranging for the ambulette to take us, finding someone to accompany me, and informing his therapists of his absence on Monday. Work, work,work.
  • CAMP APPLICATION. I will explain in a future post why we have decided to send Dovi to overnight camp this summer (just reading what summer was like 2 1/2 years ago might give you a clue). That means MORE paperwork, searching for more reports, and making more copies.
  • COMMUNITY HAB CHANGES.  Dovi's Sunday counselor just called to inform me that an emergency came up and she can't take him on Sunday. Which means another phone call to see which of his weekday counselors want to switch with Sunday. His Tuesday girl is taking a month off, because her brother is getting married in South America in two weeks and she is busy with last minute preparations. More phone calls to find a replacement.
  • SHABBOS VOLUNTEERS. Every Friday I am busy coordinating girls to play with Dovi over Shabbos. More phone calls. This one wasnt home. The other one kept calling to find out if she can come on Friday night instead of Shabbos afternoon. More phone calls.
  • HIS BED TENT BROKE. Dovi's sleeping situation is a major story on its own. But the latest installment is that he broke our newest contraption meant to keep him from escaping from his room in the middle of the night and getting into trouble. Which meant more hours spent in front of the computer trying to find the cheapest yet sturdiest camping tent that fits a twin mattress. We settled on this one. which was supposed to arrive today but hasn't yet. It likely won't arrive in time to be set up before Shabbos begins at 4:22. His old half-broken one will have to do for now.
  • WELL VISIT. Dovi's pediatrician is amazing; he graciously cooperates with paperwork and letters I need every other minute to obtain or continue all kinds of services for Dovi. However, I havent' been with Dovi for a well visit in a while, as it's basically impossible physically and mentally to hold the poor screaming kid down for the exam. He is also, according to the ped, "behind" with the immunization schedule. My husband wryly commented, "This doctor worries about an autistic kid keeping up with the immunization schedule? Is he serious?" Pretty funny. so they refused to give me a medical form to send to the above mentioned doctors and agencies. I also need him to help me out with a letter to a medicaid vendor seeking a permanent solution to Dovi's bed issues. Of course, it's all contingent on that all-important well visit. I just do't know when to schedule it for... between the psychiatry appointment, Thanksgiving, and other appointments, I just don't have time for this too.
  • SCHOOL INTERVIEW. Dovi is aging out of CPSE in August. I have been researching schools for him for months and have an interview set up in 2 weeks time at our #1 choice. (It's a six figure tuition! GULP.... more on that later...) More paperwork. More copies of reports to drag along. More therapists to inform of his absence, and maybe get them to come along with me.
All that said, I am prostrated on the floor with gratitude to G-d for all these services available to me. Community hab counselors, school interviews, psychiatrists, weekend volunteers, school therapists - each and every one of these individuals and programs are what makes life as an autism parent survivable. But each of these entities comes with a price attached, which is more work to do. I am Dovi's unpaid services coordinator and advocate, tasks I carry out with pride and grace. But this translates into pushing aside the unimportant, optional things like, oh, updating my blog.

In addition, for some inexplicable reason I haven't been functioning at my optimal level all week. I've been tired and sluggish and just struggling with the day to day. My laptop has been so-o-o-o slo-o-o-ow, and I've been researching new laptop options and going nuts. Should I get a Chromebook? A tablet? I don't want to spend more than $250. Any options out there?

In conclusion, all of the above are reasons why there hasn't been more scintillating content for you to lick your fingers with. I apologize. I don't see life calming down any for the foreseeable future, but I will try to make updating this thing more of a priority. Meanwhile, have a lovely weekend, and good Shabbos to all.

1 comment:

  1. yes........ this is my life..... almost all of it plus a bunch of other stuff you didn't mention....... and then I feel guilty for ONLY working part time and then struggling to make a full time income in part time hours. Some days I just say screw it all. Today I did no work at all AND no autism stuff. I cooked Shabbos and volunteered at my kids's school. Good Shabbos--- and keep the blog at the bottom of the priority list--- no worries!


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