Archive | special needs RSS feed for this section

It’s not that I have nothing to say…

15 Apr

…it’s more that my brain may be spinning out of control because there’s so much going on, coupled with the idea that wow, it’s actually spring out, and sunny, and things are blooming here and I’m convinced that the PNW is trying to seduce me with its charms by sending a pair of ducks to visit in my back yard.

seriously - ducks

seriously – ducks


The kids had Spring Break last week, plus we had a friend over from Ireland, and what the heck, the weather’s so nice suddenly, let’s have a bbq.  That’s when the ducks arrived as well.  And for better or worse – but probably hopefully just better – I’ve joined a couple friends and we’ve signed up for personal training at the local gym.  God help that nice young man who’s taking us lot on.

There’s also been a call to Poison Control (to learn that it’s okay to take 30 or so B12 vitamin gummies) and one dog who wandered off (but only for 20 minutes, and she made friends with a couple walking through the neighborhood with their dog) and the water pipe below all the giant landscaping boulders has sprung a leak, leading to this lovely view for now…

I'm referring to it as our duck pond.

I’m referring to it as our duck pond.



And then there was the last minute cancellation spot at the neurologist, so Maura and I went for the regular check-up visit.  The doctor must have seen that I needed more to deal with because he mentioned possibly doing a trial of taking her off seizure meds.  He was also kind enough to smile and note that I wasn’t probably ready to hear that.  Instead, we’re going to do an EEG first, see what that brain of hers is doing before deciding whether or not to try taking her off meds.

I can’t even wrap my brain around it. I think that she still needs it.  But I also think that this neurologist would be very good about listening to me when I say that, which is its own comfort.

We did have to go for a blood draw, which we haven’t done in years and were overdue in checking her blood levels.  The last blood draw we did was quite traumatic, so I let the lab person know and said “Yes, we might need an extra person.”

To those three women in the lab at Seattle Children’s Hospital – thank you.  Thank you for keeping the mood light and for telling Maura how good she was being even when she cried and howled, and to the one who totally distracted her when she said “Do you like the movie “Frozen”?” and started singing “Let It Go”.  I’m glad you all got to see how quickly Maura was over her trauma and her smile of relief at the end.

And I’m also grateful for the Starbuck’s located in the lobby where I immediately took Maura for a treat for being so very brave.

I still have to schedule her EEG, which will hopefully go a lot smoother.  But first, I shall finish my coffee.


About these ads

The report card

27 Mar

I have to laugh that the school sends a report card for Maura.  She’s getting straight A’s.

Granted, the “A” is for “Adaptive”.  But still, get me that bumper sticker, I’ve got a straight A student!

I haven’t been allowed to read the full packet they sent because Maura keep stealing it.  (And yes, they sent a multiple page progress report – the lengths this school goes to will never cease to impress me.) What I have learned is that Maura is still not great with numbers.  She can count, she can identify, she can get to 20 sometimes.  But she’s really only consistent to ten.

However, she has sight words.  A list of words she can point to, read by herself.  All the days of the week, and words like “socks”, “Mom”, “cat”, and “rectangle”.


And there sums up life with Maura.


My Girl Wonder

Fun Times!

25 Mar

Today’s Fun Times! is brought to you by the prescription without enough information, and being On Hold.

Thank you for remaining On Hold, we will get to you as soon as possible.

Such is the life of a special needs parent.

See, as it turns out, Maura’s emergency seizure meds aren’t labeled well, and the instructions the pediatrician wrote down for the school nurse weren’t clear.

So I called the ped’s office, which really means calling their automated system, choosing “speak to nurse”, which means you don’t speak to a nurse, you leave a message and they’ll get back to you in three hours.

An hour and change later, the nurse calls…to tell me “Oh, we can’t help you, call your neurologist.  Oh, and Maura’s due back at the neurologist this month.”

Crap.  Guess which mom didn’t schedule the “see you in six months” appointment?

So I call the neurology department, which of course, means calling the automated system, and chose the “leave a message for the nurse” option – which tells me to leave all the info, and they’ll get back to me within one business day.

One. Business. Day.



So I leave my message, hang up, and then redial for “Schedule an appointment”.  After 11 minutes on hold (where every 30 seconds a perky voice startles you with “Thank you for remaining on hold!”), I get a person….who then puts me on hold.  But then takes me off hold after a minute and schedules our follow up neurology appointment.

For June.

And the stupid thing is I think “Oh, well that’s not as long as I thought it would take to get in!”  (When I called in August to get our first appointment, the first available with anyone was December – we got in earlier because of a cancellation.)  The woman asked if there was anything else I needed, I mentioned the call to the nurse about the meds and she said “Oh, great, the nurse should call you back.”

Well, I tried.

Yes, these are the fun times I lead.  This is what sometimes fills my day with the answer to “So what did you do?”  It’s also one of those things you deal with when you have a child with special needs who is actually pretty healthy – there’s a lack of urgency that is both comforting and yet makes you feel a bit neglected.

Oh well, we were on the cancellation list.  And I painted my nails while on hold. So there’s that.


Get every new post delivered to your Inbox.

Join 5,834 other followers

%d bloggers like this: