Being Me…

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

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National Walk for Epilepsy, 2016 Edition

National Walk for Epilepsy

Well, we went to the National Walk for Epilepsy in Washington, DC, this past weekend and had a lovely time.  There was a meet and greet Friday night at our hotel, then the walk on Saturday.  Weather could NOT have been better – it was in the 70s and sunny.  Yes, the start to the day was a bit cooler, but since we were walking, it didn’t take long to warm up.  Our family took the Fun Walk (1 mile) but there is also a 3 mile walk (the main walk) which we have participated in in the past.  Hopefully next year we will be in better physical shape and will participate in the full walk.

We found out just how out of shape we were Friday night.  After the meet and greet, we went to get our son something to eat.  Adult finger foods aren’t really his thing so we set out to get something more to his liking.  My husband used Google Maps and found a Wendy’s just a short distance away.  We set out, only to find that the location is an empty lot.  So…we tried another app and found that it was this other direction.  We went that way…and found nothing.  Sigh.  By this point we had easily walked a mile and a half, and it was starting to get dark.  I wasn’t entirely comfortable being out on the streets of Washington in the dark, but well, there you have it.  After a little more searching, we finally gave up and started back.  My poor son was so tired at this point he didn’t even want dinner.  (I should add that he had had a good snack at about 4:30 so it wasn’t as if he hadn’t eaten all day.)  All in all, we walked a bit over four miles on Friday.

Somehow a four-mile warm-up for a one-mile walk doesn’t really work out well if you aren’t in good shape.  I was really feeling the Friday night adventure Saturday morning.  If I had been more awake, I’d have taken a pain killer before walking more, but I wasn’t and I didn’t.  Sigh.  Lesson learned.  We took a cab to the walk because we woke up late and were running behind, walked the walk , and then walked the 1.8 miles to the hotel.  By this time I was REALLY ready to be done.  But no, there’s more… LOL.

After the walk back to the hotel, we checked out and headed out to Sterling, Virginia.  Well, to be more precise, Dulles, Virginia, out near Dulles Airport.  The Air and Space Annex is out there and is a wonderful place to explore.  Among other things, that is the house of the space shuttle Discovery.  It is fascinating to see that up close – it is truly an impressive sight.  And there is so much more to see there.  We spent a couple of hours exploring and then sought out our hotel for the evening.  It felt really great to sit down and relax in peace and quiet.  All in all, it was a fantastic weekend.  We rarely get a weekend away to spend time with our son, one on one, so it really meant a lot to be able to do this.  I think he really had a great time.  I would like to think that he will cherish these memories.



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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.


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Unsent letters – F Psychological Associates

Dear Madam,

I received your letter of February 24, 2016, regarding a recent missed appointment and termination of our use of your practice – the appointments my 10-year-old son and myself.

I admit that we completely forgot the appointment of Thursday of last week due to the death of my maternal grandmother.  She passed away on Wednesday, at the age of 93, and she was very important to us as a family.  My mother needed assistance and quite frankly, I was more concerned about her well being than the appointments I had scheduled for myself (other doctors) and my son (your practice).  Nonetheless, it is quite rude to set an appointment and not show up.  I apologize and I would gladly have paid for the appointment, had I been given the opportunity.  Instead, I found myself holding a letter stating my son was no longer a patient of yours and that I should look around the area for someone else.

I have to say that is without a doubt the weakest offer of suggestions of help for a therapist that I have ever heard.  I found your practice, didn’t I?  How do you think I did that?  I know how to find help for my child but I have to say I will be much more careful this time around – I had no idea one could get booted from a practice for a missed appointment, leaving a child without the assistance he needs on no notice.  Frankly, I think I will start with Children’s Hospital – they have a far better track record with my child and with people around in general.

Third, I do hope when you said you cancelled all future appointments that you were referring to my one appointment scheduled in May with your doctor.  If not, well, please do cancel my appointment because I won’t be returning.  I assume that two months’ notice is enough time for you.

Thank you for your letter and your recommendations.  I hope that this is the end of any contact between us.  I have no need for any further assistance.

Sincerely (mostly)

An aggravated parent