Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘EEG

You might be an autism parent if…

with 23 comments

…you have days like this.

If you haven’t been following the hashtag on twitter #youmightbeanautismparentif you’re missing out.  While the following events were taking place, I added a few tweets myself.  And then I found it very cathartic, and just couldn’t seem to stop!

Pudding needed an EEG.  I called ahead to the hospital to get a full description of what will happen during the procedure so we can social story it.  I call again to emphasize she has autism and will need accommodations.  They tell me they have lots of experience.  Not with Pudding, I think.  It will only take half an hour, but you should medicate her, just in case.

Yesterday I dropped Pudding at school, then took Cubby for OT.  In a rare moment of convenience, Pudding’s doctor is located in the same place, and I needed to collect her prescriptions.  As I went to open the envelope, the receptionist told me firmly, “they’re both in there” and instead of checking, I just put the envelope in my bag.  I would come to regret that, as we went straight from OT to Cubby’s school concert, and then directly to the pharmacy.

I opened the envelope to find two identical prescriptions for her ADHD medication, not the sedative we needed.  I called the receptionist back, and asked her to fax another prescription directly to the pharmacist.  I had to have that medicine by 9.30 the next morning at the latest.

After collecting Pudding from school, we went straight back to the pharmacy at the mall.  No complaints here- the kids love the mall.  The pharmacist tells me they don’t stock this medication, and I’d need to go to a hospital pharmacy.  Oh, do my kids not like leaving somewhere before they’re ready, but I wanted to get that prescription.

The hospital pharmacy does have the medicine, but they won’t give it to me because I only have a fax, and not the original prescription, and we wouldn’t want to violate section 6 of the something-or-other, now would we?  Throw in another couple of meltdowns, because they weren’t ready to leave there either.

I drop the kids off with Ms. Leia, and speed over to the doctor for the original.  Which they can’t find.  Then they do, and we’re all set….but it is too late to go back to the hospital.  I’ll have to do it in the morning.

After a couple of hours of unsuccessfully trying to get Pudding to sleep, I take over from Spectrummy Daddy.  She finally falls asleep in our bed at 11, only to rise more hyperactive than ever just before 5.  I wake up more tired than I was going to bed, with a cold to boot.  Still, at least I got all my bad luck out of the way the day before, right?

After dropping off Cubby and Daddy, Pudding and I return to the hospital and obtain the magic elixir.  I dutifully wait until the instructed time to give it to her, and watch her promptly spit it back out.  Thank goodness we had a spare second dose, and I try the never-fail approach of bribery to get her to swallow.  It fails.  I have mere drops left, and I decide to take it with us.  She must have swallowed some at least, because she looks drowsy in the car.

We arrive, only to be given forms to complete.  I can’t believe there is more paperwork, didn’t I call twice to explain my daughter has autism?  Giving me forms means I can’t take care of my kid in the waiting room.  Do you think I only call because I like sharing intimate details about my family?  People, I have a blog for that!

After twenty minutes of purgatory- which is getting evil looks from the rest of the waiting room as Pudding shouts about how quiet she is being- the technician asks me where my referral letter was?  My what?  This is the first I’ve heard of such a thing, and it can’t be necessary because I was at the doctor twice yesterday and nobody mentioned it.  They call the receptionist, who I would call by something else were this not such a family-friendly blog, who tells them she’d given it to me in the envelope.  Umm, no.

I think at this point, the staff tire of what we tired of twenty minutes previously (being in the waiting room) and they take us in.  Pudding, though groggy, is bouncing off the walls, and they decide she needs more medicine.  I explain about the whole spitting out thing, and they decide the strong-arm approach would be most beneficial to a young, scared, autistic child.  By the time they’ve pinned her down, held her nose, and squirted in the medicine, I’m crying as much as Pudding, as she begs me to help her.  She is a mess, unsurprisingly.  I am too.

They wait for the medicine to kick in.  It doesn’t.  We call the mean receptionist again to get another prescription, but we never hear anything back.  I keep my terrified cabin-feverish girl in that tiny room of sensory hell as they alternately try to stick wires to her head, then let her sleep.  Suffice to say, neither happens.  I want to leave just as much as my girl, but I know we’ll never get her back for a second try.

After three and a half hours they send in another technician, aptly named Angel.  She gets the wires and bandages on, and between us we get through an EEG.  Why, oh why, did they not send her in the first place?  Now it doesn’t matter.  We’re done, and we don’t have to go through it again.  In one week we’ll know if seizure activity is the cause of Pudding’s sleep problems.  I’m hopeful that epilepsy is just something we can rule out.  I’m hopeful.

You might be an autism parent if you have a day like this, and still remain hopeful.

Written by Spectrummy Mummy

November 22, 2011 at 4:17 pm