You might be an autism parent if…
…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!
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#youmightbeanautismparentif you style your hair according to how it feels, not looks. #youmightbeanautismparentif your child doesn’t just march to the beat of their own drum, they dance to their own symphony.#youmightbeanautismparentif you tell people you have “one of each” and you’re referring to a seeker and an avoider, not their sexes.#youmightbeanautismparentif you know just how much work goes into play.#youmightbeanautismparentif you sleep less now than when you had a newborn.#youmightbeanautismparentif you have swings inside *and* outside your home.#youmightbeanautismparentif you’ve learned a whole new language, and come up with your own translations.#youmightbeanautismparentif your child has the most beautiful eyes you’ve ever seen, and you *still* think eye contact is overrated.#youmightbeanautismparentif you wonder what is wrong with someone, then realize they’re neurotypical, and can’t help it.#youmightbeanautismparentif you never say “piece of cake” unless you’ve got a slice to give a certain someone.#youmightbeanautismparentif you refuse to let anyone underestimate your kid…or you for that matter!#youmightbeanautismparentif you can never return clothes that don’t fit, because you’ve already cut the tags out of them.#youmightbeanautismparentif your child is never sick, but has seen more specialists in two years than most people do in a lifetime.#youmightbeanautismparentif you don’t know if your kid got it from you, or you got it from them, but you both get flappy when you’re happy.#youmightbeanautismparentif you have tried (and failed) to get theraputty out of your carpet.#youmightbeanautismparentif you have gone back to a doctor to show them why they shouldn’t dismiss a parent’s concerns.#youmightbeanautismparentif you drove across 4 states to go to the dentist who “gets it” and it was worth it.#youmightbeanautismparentif you know that behavior is communication- and that goes for you as well as your child!#youmightbeanautismparentif you know the squeaky wheel gets the grease, but you won’t rest until all the cars get the oil they need.#youmightbeanautismparentif your kid wears gloves in the summer and shorts in the winter. And you wear kid gloves all the time.#youmightbeanautismparentif you think it should have been called Sit ‘n’ Spin, ‘n’ Spin, ‘n’ Spin, ‘n’ Spin, ‘n’ Spin, ‘n’ Spin…#youmightbeanautismparentif your heart sinks when a bathroom has hand dryers instead of paper towels. And you so environmentally-friendly.#youmightbeanautismparentif toe-walking means your child has better calves than you do.#youmightbeanautismparentif your talk of vibration and arousal levels doesn’t mean what your hubby thinks.#youmightbeanautismparentif your child can read, but has never caught a ball.#youmightbeanautismparentif your kids congratulate themselves for “good talking.”#youmightbeanautismparentif you’ve watched your kid dance in concentric circles and tried to find a bee to explain what it means.#youmightbeanautismparentif you are lousy at science, but can hold your own in neurology, psychology, psychiatry…#youmightbeanautismparentif there is a loud noise and you instinctively cup a child’s ears.#youmightbeanautismparentif you haven’t used the bathroom alone in years.#youmightbeanautismparentif People who’ve never met your kids tell you how amazing they are.#youmightbeanautismparentif the first thing you’ll do after you win the lottery is take your kid to a Swarovski shop and let her loose.#youmightbeanautismparentif you don’t need your GPS when your kids are in the car.#youmightbeanautismparentif you know *exactly* what Sheldon from@thebigbangtheory was like as a toddler.-
#youmightbeanautismparentif you laughed when the EEG technician said she needs to be still for 30 minutes.#noteven30seconds #youmightbeanautismparentif your husband told you you were addicted to this hashtag, and you responded, “no, I’m perseverating.”#youmightbeanautismparentif the best teacher you’ve ever had is only four years old.#youmightbeanautismparentif you got bored of your own post-diagnosis pity party and decided to celebrate the wonder of your child instead.#youmightbeanautismparentif you know that “core deficits” isn’t referring to your doughy waistline.#youmightbeanautismparentif you know that joint attention has nothing to do with preventing arthritis.#youmightbeanautismparentif you’ve returned “Nothing is wrong with my child, what is wrong with YOU?” to a stranger.#youmightbeanautismparentif though your child doesn’t like to be touched, she touches people across the globe.#youmightbeanautismparentif you quite literally stop and smell the roses, because your kid’s sense of smell began to function.#youmightbeanautismparentif you’re used to more questions than answers.#youmightbeanautismparentif you have made your own crash pad out of a duvet cover and pillows…or read this and went straight to make one!#youmightbeanautismparentif you realize with a certain irony that you play more now than when you were a child.#youmightbeanautismparentif you aren’t offended if it seems somebody is ignoring you, but are frequently pained by ignorance.#youmightbeanautismparentif you have tried (and failed) to get theraputty out of your carpet.#youmightbeanautismparentif you have gone back to a doctor to show them why they shouldn’t dismiss a parent’s concerns.#youmightbeanautismparentif you drove across 4 states to go to the dentist who “gets it” and it was worth it.#youmightbeanautismparentif you know that behavior is communication- and that goes for you as well as your child!#youmightbeanautismparentif you know the squeaky wheel gets the grease, but you won’t rest until all the cars get the oil they need.#youmightbeanautismparentif your kid wears gloves in the summer and shorts in the winter. And you wear kid gloves all the time.#youmightbeanautismparentif you think it should have been called Sit ‘n’ Spin, ‘n’ Spin, ‘n’ Spin, ‘n’ Spin, ‘n’ Spin, ‘n’ Spin…#youmightbeanautismparentif your heart sinks when a bathroom has hand dryers instead of paper towels. And you so environmentally-friendly.#youmightbeanautismparentif you know the journey is more important than the destination.#youmightbeanautismparentif you know that DSM IV isn’t a date in roman numerals.#youmightbeanautismparentif toe-walking means your child has better calves than you do.
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.
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
Worst.Parenting.Day, Ever. That nails it.
Spectrummy Mummy
November 23, 2011 at 11:11 am
What a nightmare for you all. Fingers crossed that everything will be ok!
Di
November 22, 2011 at 4:37 pm
Thanks Di.🙂
Spectrummy Mummy
November 23, 2011 at 11:12 am
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
Not at all, that is the perfect analogy.🙂
Spectrummy Mummy
November 23, 2011 at 11:13 am
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
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
I can but hope…
Spectrummy Mummy
November 23, 2011 at 11:14 am
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
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
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
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
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
[…] 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 […]
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