Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

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

23 Responses

Subscribe to comments with RSS.

  1. oh. my. God. I am so sorry.
    The day we did our son’s EEG was one of my worst parenting days ever. Only to be followed by the 24 hr EEG. We did it for the same reason – sleep. We got no answers, yet I still remain hopeful too.
    And so will you.

    akbutler

    November 22, 2011 at 4:33 pm

  2. What a nightmare for you all. Fingers crossed that everything will be ok!

    Di

    November 22, 2011 at 4:37 pm

  3. Awful awful runaround. :(

    I’m almost always amazed and disappointed by how little use medical professionals make of the “she’s autistic” tidbit.

    Like if you showed up and said, “she shoots laser beams out of her eyes” the doctor would reply, “mm hmm, that’s great, now let’s take a look at those eyes”, followed by, “Argh, my eyes! My eyes! She shot laser beams into my eyes!”

    Possibly I’m overdramatizing

    Jim W

    November 22, 2011 at 4:45 pm

  4. Hopeful right along with you…Munchkin just had an EEG too, but it came back normal. Which doesn’t make me feel better, since they told me that staring seizures (which he’s maybe having) don’t show up on a routine EEG, and after we see the neurologist (in FEB!) he’ll probably order a 24-hour EEG. Yeah, that will be fun. Hoping with you that he’s just spacing out and we’re not adding another diagnosis to our alphabet soup.

    Ellie Grove Giberson

    November 22, 2011 at 4:58 pm

    • If we have to do a 24 hour EEG, *I’m* going to have a meltdown. Fingers crossed for you too.

      Spectrummy Mummy

      November 23, 2011 at 11:14 am

  5. I’m sorry the medical professionals didn’t get it and you both had to go through that. Maybe they will have a clue now.

    Nomads By Nature

    November 22, 2011 at 5:53 pm

  6. I seriously have to wonder what part of “my child has Autism” the medical community doesn’t get. I went through the regular EEG and then the 48-hour EEG rigamarole with my 5 y.o. back in May when he was diagnosed. It was heartbreaking. And, like you, I walked out of there with hope…

    I am so sorry you had such a rough day. Hang in there….

    Lisa

    November 22, 2011 at 6:11 pm

    • Thank you. Seriously, dealing with autism and developmental delay should be mandatory training for anyone in the medical profession.

      Spectrummy Mummy

      November 23, 2011 at 11:15 am

  7. What is it about that EEG experience and autistic kids that these “professionals” just can’t “get”? Ugh!! I do know exactly how you felt – especially when they held her down while she was crying. We moms are just so utterly helpless at that point and I’m telling you – I so wanted to punch those women who did my son’s EEG!!!

    I’m glad you are done. I was where you are now just about two months ago – and you know how much progress we’ve made having discovered the silent sleep seizures since then. Truthfully, the neurologist told me that the anti-seizure meds my son is taking may be effective enough, that in one year – he will not need them anymore. So, don’t despair. Seizures are scary when you first learn about them – and then, the exciting part of treatment begins. Even without seizures, there are treatments from a good neurologist. I’m very happy to tell you that it only gets better from here. :)

    Btw – I had to laugh at “you can never return clothes that don’t fit, because you’ve already cut the tags out of them.” So true!!

    solodialogue

    November 22, 2011 at 9:40 pm

    • Thank you, friend. Like many of these diagnoses that we acquire round these parts, it is the thought of them rather than the reality. We’ll see what happens, but please let it not require another EEG. :(

      Spectrummy Mummy

      November 23, 2011 at 11:17 am

  8. I love all the #youmightbeanautismparentif statements.

    I am not going to defend the EEG technicians, but I think it is ignorance. Unfortunately, people who should know better all too often don’t. I think you should talk to the doctor about all of the mix-ups and also write to the hospital about the inappropriate way Pudding was treated.

    Medical staff are taught to strong-arm children to take medications and most have no clue that this is the worst choice for a child with an autism spectrum diagnosis. Calling this to their attention increases the chance that this will change in the future.

    Sue

    November 22, 2011 at 11:45 pm

    • I can’t imagine the strong-arm technique being good approach for any child…but in our case, they’d lost her trust and would never get it back. Thank goodness they eventually sent somebody else in.

      Spectrummy Mummy

      November 23, 2011 at 11:18 am

      • I agree the strong-arm technique is not a good approach, but it is what many were taught to use after first trying other tactics. I am glad they sent somebody else in too!

        Sue

        December 1, 2011 at 8:58 am

  9. I’m so sorry you had to go through this. I can tell you as someone who has worked in the medical profession, I was never offered training in dealing with non-NT children. I can also say as a parent of both NT and non-NT children, strong arm techniques are often used with children. Taking my NT 22 month old to the dentist traumatized us both. They strapped her down on a board and then held her head still while she screamed, and wouldn’t let me touch her to comfort her while they worked on her teeth. We found another dentist, and while they don’t strong arm, they don’t let parents go back with their kids. Living rurally, we eventually had to make plans to drive eight hours and book a hotel suite to get the kids to a dentist that doesn’t strong arm and lets parents go back with their kids. It truly is horrible when we have a limited number of doctors or specialists and are unhappy with the treatment we receive-whether it is because of insurance limitations, where we live, or whatever. We have very little recourse.

    I hope that if you have to do the 24 hour test, things go better for you and Pudding.

    Annie

    November 23, 2011 at 5:08 pm

  10. I’m in the UK (National Health Service) and my 9yr old daughter is on the spectrum. Our GP practice has a Nurse Practitioner who co-ordinates all the medical care for our special needs kids. My daughter is always excited to learn we’re “going to see Fiona,” and she trusts Fiona even when the treatment might not be fun (flu shots, etc). When there is need for medical testing, Fiona paves the way for us. Any forms or meds we need to complete, she obtains for us well ahead of time so we can see to our daughter in the waiting room on the day of testing. For something as intense as an EEG, our Nurse Practitioner can arrange to accompany us. Although the NHS is far from perfect, this Londoner still wonders why so many Americans fight so hard against a national health care system when we’re fighting equally hard to keep our NHS free at the point of care.

    Lollipop

    November 30, 2011 at 5:34 am

    • Lollipop, I’m also a Brit, and a huge supporter of the NHS. Even more so since reading about your Nurse Practioner- wow! The events I described took place here in Johannesburg, I have to say we never experienced anything this bad in the US (probably they are afraid of being sued) though a lot needs to be done everywhere in terms of autism awareness in the medical community. I love the idea of having that one person dedicated to your child’s care who liaises with the other professionals involved. The pressure on the NHS keeps mounting, I sincerely hope it will always remain free at the point of access and of decent standard to boot.

      Spectrummy Mummy

      November 30, 2011 at 12:59 pm

      • Outside of our area, I’m not sure how common it is to have a “Fiona” like we have, but by gosh, she really does make life easier for us. From the little things like helping us to prepare for minor procedures (which means we in turn can prepare our kidlet) to attending statement reviews, etc, Fiona’s worh her weight in gold to us. The one thing we dread is the day she retires or moves on to another GP’s office. Ahh, SA! One secondary school we’re considering has all South African speech & language pathologists. Apparently South African SLT’s are universally considered to be cream of the crop for the rigorous SLT training over there. :)

        Lollipop

        November 30, 2011 at 3:27 pm

        • Ooh, I didn’t know that about SA SLPs. Yay! I’m definitely impressed with the ones working with Pudding here, I have to say.

          Spectrummy Mummy

          November 30, 2011 at 3:49 pm

  11. [...] effort of getting Pudding into school, or schedule an appointment for a 24-hour EEG for a child who couldn’t handle a 30 minute one; but I was too drained to get through another ordinary [...]


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 3,529 other followers

%d bloggers like this: