Being Me…

and discovering that that is quite the roller coaster ride. Wanna come along?

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Good news, bad news

I’ll start with the positive.  My DD (darling daughter) had an appointment with her orthopedic doctor due to the fact her ankle-foot orthotics (AFOs) were cracking around her ankles.  To say she’s rough on her braces is an understatement.  I really expected the usual:  check her out, see her walk, write prescription for new braces.  We’ve been dealing with this for about 5 years now, I guess.  I really like her doctor – he’s great with her.  He heard that she spent our full 30 minutes in the waiting room running around the waiting room and speed-walking, came in and watched her dance around the room, and said he thinks she should take a break for the summer and we’ll re-evaluate in the fall.  It looks like she might be done with braces!  Yay!

Now, the bad news.  Our insurance company is doing what insurance companies do best: denying something our daughter needs, according to her developmental pediatrician.  That is, they decided not to cover ABA therapy in our home.  Mind you, they told officials with the company we’re going through twice – not once, but twice and with different people – that it would be covered.  It was only after they got more information that they decided, “Oh well.  We changed our minds – denied.”  Sigh.  I’m going to file an appeal, but that just takes more time and I suspect I know how it will end.  This may be the kick in the pants that I need to start the process of seeking the EDCD waiver for our little girl.  I haven’t known where to start, but this ABA company has offered to walk me through the process as has someone from another support group who does this regularly for others.  At least I’m getting off to a good start with support from knowledgeable people.



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Movie Marathon Weekend

Pooped in your shoes I have.jpg

Ok so this was NOT the most productive weekend ever.  It was, however, delightful.  The kids had a sleepover with Grandma and Poppop Friday night, so my husband and I decided to watch the Lord of the Rings trilogy over the course of the weekend.  I love those stories so much.  The movies are beautifully done, in my opinion, so we had a terrific time.  It was nice to spend some concentrated time watching something that we both really wanted to with less concern about kids being present.

Saturday I continued the movie marathon by having my “girls day out” in our bedroom and watching the original Star Wars trilogy by myself.  It would have been more fun with my husband but he volunteered to watch the kids so I could have some time to myself.  The quiet of time uninterrupted combined with one of my favorite movies (actually three…) was fantastic.

I think time to myself is incredibly important right now and I am trying to ensure that I get it fairly regularly.  Our daughter has developed some behavior issues relatively recently and is … challenging at times (well, go figure – what child isn’t at times).  If I don’t get time alone once in a while, I find it much harder to be patient like I need to be with her.  I think this was a great self-care weekend!

And next weekend?  We’re off – my husband, myself, and our son – to the National Walk for Epilepsy in Washington, DC.  It is on Saturday but we’re going up early to meet the LGS Foundation group for a Meet and Greet Friday night as well as to spend some time Saturday looking around DC with our son.  He’s at a prime age to enjoy it.

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Moving Forward

Well, we took a step forward today.  I’m trying to focus on the positive and not beat myself up for not doing this sooner.  We had the initial meeting to answer questions about our family and our daughter to get an ABA therapist to come in and work with our daughter.  I’m so excited about the help we’re on the way to getting.  Today’s session was just a question and answer session; now they have to start the process of getting approval for the service from our insurance company – and that could take some time.  Still, to think that we will (hopefully) soon have someone coming in that understands the challenges we face with a child with both epilepsy and autism to help us help HER better is so exciting!

The areas they should be focusing on, according to what we talked about today, include communication and finding out the root cause of behavior issues we’ve had, potty training, and day-to-day tasks like dressing/undressing, putting toys away, etc.  We’ll see how this works out, but it has promise.  I’m just excited at the thought that we could achieve these goals.  I know that that remains to be seen, but this is the most hope that I’ve had in a long, long time.

Hope is a wonderful feeling.