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Stop Me If You Think You’ve Heard This One Before

November 20, 2007

When I started this blog, I really wasn’t sure what form it would take.  I watched how our publisher Joe Wikert went from starting a blog at the insistence of author Robert Scoble (because how could he sign with a publishing house where the publisher wasn’t blogging) to finding his voice and making a positive contribution in the blogosphere.  I wanted the same kind of relevance, but at the same time felt that his message wasn’t going to be my message.  Sure, I work in book publishing, and I have a lot of views on the state of the industry and content development, but it’s not all that I am about.  Soon after I set up the blog, I attended BlogHer, and saw that blogs really did come in all shapes and sizes, and the most important thing to do is find your passion.  Which, for the most part, is what I strive to do.  This isn’t solely a publishing blog, or a mommy blog, or a social media blog.  It’s Ellen’s blog, and that means it’s all things Ellen.  I’m going to talk about trends in book publishing and in the next breath gripe about how hard it is to set up a playdate.  Because that’s my life, and if I can’t blog about my life, what else is there? 

There is however one part of my life that I haven’t talked about, and that’s because it involved IT Boy.  I’ve alluded to some things about his life, but I haven’t really told the full tale, which up until now I’ve been comfortable with.  He’s going through some things, but to respect his privacy, I haven’t blogged about them.  Something happened recently that made me reconsider my stance on that.

Last week, I encountered someone in a store shopping with her son, who looked to be about 6 months old.  She saw IT Boy and asked how old he was and was he walking.  I answered that he is 14 months old, and no, he isn’t walking.  I’m not sure why those words always come out of someone’s mouth when asking about my son.  It’s a litmus test that I don’t recall signing up for and I usually answer with a scowl on my face.  In this case, however, the woman had a reason for asking.  She’s felt her son was a bit, in her words, floppy, and isn’t making any of his milestones, and her doctor suggested she have him evaluated.  She was at a loss, and had no idea what to do next.  Upon hearing this, my tone did a 180 and I sat down with her and explained the process that we went through when IT Boy was 3 months old and that continues to this day.  She was so grateful to hear from someone who had been there and done that, which I have.  She said she was searching on the Internet and didn’t find much.  I told to her to stop searching WebMD and Wikipedia and all those sites until she got him evaluated and she knew what they were dealing with.  We parted with her taking down my phone and email, with a promise to call after the evaluation.

She found herself in a place that I know all too well.  IT Boy was always a bit floppy and it didn’t really concern me all that much.  His doctor remarked about it visit after visit, and we had many at first, and suggested we put him through Early Intervention (EI) at 4 months if his situation did not improve.  I wasn’t overly concerned, even though as time went on he wasn’t hitting all his milestones.  It wasn’t until we took him to another doctor in the practice who asked who in EI had evaluated him and we had to say we were not planning on putting him into EI until 4 months that the panic button went off.  The other doctor said this was a low tone child who needed help pronto.  That led to the first phonecall with EI, and the beginning of the adventure that continues to this day.

I’m certainly not claiming to be an expert on hypotonia or early intervention, but what I am is a parent who is going through a situation that others might be facing.  I can help others by talking about how we have faced things and the choices we’ve made.   In fact, the same day I decided to do this, my co-worker IMed me to say that her friend was told by her doctor that her child was floppy – what did that mean, what should she do, etc etc.  She wasn’t finding anything helpful online, and she was panicking.  Gee, I know exactly how she feels!

So, consider this a heads up that “Confessions” will be talking about something new and hopefully helping others in the process.  My game plan is to talk about how and when to make the initial contact with EI (that’s what it’s called in NY, but it has other names elsewhere) to begin the process, how the process worked, and how we came up with a treatment plan for my son that we continue to follow.  We’re not out of the woods, but the good news is that it is helping IT Boy who is making great strides, literally and figuratively.  He’s still not walking yet, but I bet he will beat his neurologist’s prediction of 20-24 months.  Sometimes a mother just knows, you know?

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3 Comments leave one →
  1. November 20, 2007 10:17 pm

    Good job, Ellen! I hate the comparison game and I, too, have initially started to respond briskly to those asking questions about Addison. (how old is she?, why is she so tiny?, etc). Yet, I, too, am finding that I can help others with what we’ve gone through and the successes we’ve had. Yes, she’s small, she’s actually doing quite well, etc. It is surprising how many people now call me when a family member is diagnosed w/ preeclampsia or has a preemie.

    IT Boy is such a gem and a blessing to your family (never mind that he is adorable). It is wonderful that he can be a blessing for others, too.

  2. January 8, 2008 9:44 am

    Hi

    I’ve just come across your blog and I can so relate to the “isn’t he walking” yet comments, my youngest has hypotonia/hyperextension and some general developmental delay. He’s been in the ‘system’ since just before his first birthday, he’s now 2 1/4. He didn’t sit up unaided until the day before his first birthday and only last month did he first start to walk on his own :), but it has been so fantastic since he’s started walking and he’s been a lot happier little boy. He had physiotherapy every 2 weeks for 10 months and has only just finished it, we still have speech therapy monthly and he’s in line for OT but there’s a long waiting list for that, although it is very much waited for as he has some hypersensory issues. Also waiting for his second developmental check, it was meant to be some months ago, no sign of it yet, although his therapists are chasing it up. We have had some issues with child care, I wanted him to start a playgroup and his therapists said it’d be great for him, so I enrolled him in one and it was a complete and utter disaster and it made him so stressed and misserable I took him out, we’ll try again in September this year.

    J.

    http://www.lacer.wordpress.com

  3. January 9, 2008 11:44 am

    Hi J. It’s something new every day, in all senses of the word. I’m working on a blog post about what do to when you lose faith in your therapist. We felt our PT wasn’t getting the job done, so to speak, and had a lot of angst/guilt about making a move. In short, it was the best thing we did. Thanks for stopping by and taking the time to comment.

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