xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: "All Kids Do That" Part 2: Doctor Visits

Sunday, January 8, 2012

"All Kids Do That" Part 2: Doctor Visits

This series continues, as promised! I've added a new tab up at the top which explains what I'm doing here and all that.

Today I'm happy to welcome Becky, who blogs at Defining "Normal", who is not only our first contributor to this series in the new year, but who has been very helpful to me in my organizational difficulties trying to make this series happen. You don't need to know the details, let's just all be thankful to Becky for being cool. Thank you, Becky!!!



This summer, my husband and I made an appointment for Katie at the eye doctor. I prepped her as to what was going to happen (mainly the eye drop portion of it.) I explained at length WHY those things would need to happen. I also really emphasized that she HAD to allow the doctors and assistants to do their jobs. She stated she understood. She was actually excited about going to the eye doctor. She was thrilled when we got there and went around looking at the glasses trying to pick out which ones she would have. She told me she wanted some that were yellow with purple flowers. Thank God they don’t make any that look like that!

We got into the examination room and she did great looking through all the various devices and doing what she was told. Then came time for the eye drops. I had attempted to prepare the staff about Katie. When I called to make the appointment I had told them that she has autism and that she does not like having her face/head messed with. I TOLD them that putting in the eye drops to dilate her eyes was going to be an issue. “Oh don’t worry, we deal with children all the time.” Well, you haven’t dealt with MY kid. When we arrived at the appointment, I reminded them, “My daughter has autism and she doesn’t like having her face messed with. The eye drops are going to be a problem.” Again, “Oh, don’t worry, we deal with children all the time.” *sigh* When it came time for the eye drops, I told the assistant, “Katie has autism. She does not like having her face messed with. This is going to be a challenge.” “Oh, it will be fine. I work with kids all the time.” What happened next was straight out of a time passed where they tortured patients at hospitals… They laid her back in the chair and I could see her beginning to panic. Then, the assistant came to stand over her and tried talking to her. The hands came up to the face and the yelling/crying began. Katie is a very vocal and verbal child. She is FULLY capable of relating to those around her how much she dislikes a situation, and she did just that. I stood back and watched in absolute horror/vindication. I tried to tell them! I mostly stood by to see the man struggle with the situation, but I finally took pity on him and I went over to help by holding her hands down. I told her over and over again, “Let the man do his job. You need to have these eye drops to make sure your eyes are healthy.” All the while getting louder and louder. She was also getting louder and louder. I can only imagine what the people in the other exam rooms were thinking. Now, since her hands were pinned down, she scrunched her eyes up. The poor man (kid really) tried to get the drops in. He had us go out to the waiting room while the drops did their stuff. Poor Katie was all red from crying and she was all sweaty from the stress the whole situation had caused her. But, she was happy to be done with it all and enjoyed looking at all the glasses. After about twenty minutes, the man (kid) came back to check her eyes… We had to try the drops again. The first go round didn’t take. *FUCK*

This time, when we went in to the room, I explained to Katie that we had to do the drops again because she fought so hard the first time, they didn’t get into her eyes. Panic immediately set in. Poor kiddo almost hyperventilated. The poor man came back in looking absolutely worn out before we even began and I could tell he was dreading this whole repeat experience. This time, I practically laid on top of Katie pinning her arms at her sides and used my hands to wedge her head still and pry open her eyes. She screamed like I was killing her. At the end of it all, the man looked at me wide eyed and apologized. A lot. Hopefully, he learned something from this. I’m sure he will remember it. I know that Katie and I will.

This is not something that Katie will just grow out of. She has an absolute dislike of these types of things. It is complete sensory overload for her. Yes, she will learn to cope with it, but this kind of stuff is ALWAYS going to be a challenge for her. Even though she knows having her ears cleaned and her earrings changed doesn’t hurt. Even though she WANTS it done, it is a huge source of stress for her, yet she doesn’t want to give up her pierced ears. “Normal” kids may have issues like this the first time or two it happens, but eventually they get over it. Ours won’t.



Comments (26)

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I think Katie may be related to Tommy. You're so brave.. to take her to an eye doctor! lol Tommy could do all BUT that part. Getting blood from this kid.. NO hospital will touch him (been 4 yrs since bloodwork was done). he's just too combative. The last time he was at the dentist was 6 years ago. In NY we found a dentist that worked with special needs kids and .. im not even kidding you.. came out to the car and gassed him JUST to get him IN the door in which he was properly sedated and given the FULL WORKOVER!!!

I wish this was something they could outgrow. Holy jebus. Hopefully this wont have to be a repeat test anytime soon.

Way to get THROUGH the appointment! :)
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1 reply · active 689 weeks ago
Thanks. Nothing brave about it. My kid couldn't see. I had no choice but to suck it up and take her. *sigh* I woule love to see her file though. I can only imagine what they wrote in there. :)
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Yeah. Everything was fine once everything was done. As soon as the kid stopped the whole eye drop thing, she was fine. They promised me we wouldn't have to do the eye drop thing again for awhile. Thank GOD! It's nice to read about other people having the same issues...not so nice they are HAVING the same issue, but nice to know I'm not alone.
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AHHHH I hate eye drops. I HATE HATE HATE people touching my face and I hate eye drops, but the eye dialating ones are absolutely the WORST kind for me. Seriously. When I was younger I used to beg my mom to tell the eye doc I didn't need those. Now, I just refuse them myself. Sometimes, I love being an adult.

Also, I loved how you watched in horror/vindication. Being right feels good, i get that...
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My two middle children absolutely HATE those eye drops too. They both totally wig out... say that they sting (when they definitely DON'T) and cry like crazy. I HATE taking them to the eye doctor for the eye drop reason alone. They both NEED glasses so, it's non-optional. But it's an exhausting day. I can empathize with your situation.
About six months ago, I had to take Ramon to the neurologist, and sent us to get 10 different blood tests, and an MRI... The upcoming week was as close to hell as I think I could have been! Took three nurses, mom, dad and my brother for the bloodwork. I specifically told the nurse not to call me at the waiting room until everything was ready, so she calls us, and when we sitn she's still getting tubes out and placing needles where the kid can see them!! Needless to say, it all turned really bad, really fast!! Then I took him for his MRI, slept about 3 hours. Tried to explain to the nurse she had t give him sedative all at once, but heck, what do I know... Kid never fell asleep, had to take him again, only this time they did listen!! Eye dr is next :/
My son sees an opthamologist who is phenomenal. He is so laid back and relaxed that it puts my son at ease so that when the first drop goes in the first eye that one always takes (he sort of gets him by surprise - lays the chair back and lets Joey get good and relaxed and then bam! a drop in the first eye).......The second eye is always a different story but after he recovers from the first shock of the first eye drop it's 'easier' than doing both eyes with warning.....do I make any sense?

Our guy sees LOTS of autistic kids. Sometimes, I think Joey is the only non autistic kid he sees.
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I had flashbacks to my husband and I plus 2 nurses trying to give our oldest meds when he was in the hospital - at 6mos old. A baby bested 4 adults. You'd think back then we would've had an idea what we'd be in for later.
1 reply · active 689 weeks ago
I used to have to do the heel-sticks for newborns, some babies are just born to kick your ass.
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Something I've learned is that it helps to be REALLY concrete with the staff. I'd see other RNs shrug off things like "She doesn't like her face messed with" but "Last time we were here, we had to restrain her to get the eye drops in" gets the message across.

Then there are some complete asshats that think they know better than Mom & that we're just being dramatic.

I'm still not over the dead feeling I used to get when trying to help them take blood from my kids when they were little. You're so torn between wanting to deck someone for making your kid cry, pure fear of having to come back & try again & the deepest despair that your kid has to go through this at all.

I'm sorry, mama. Hopefully next time they get it.
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2 replies · active 689 weeks ago
*snort* asshats. :) That is one of my favorite words. :) Great advice about reminding them about having to restrain little ones. Thanks!
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The asshats totally suck. My youngest will NOT lay on his back. For whatever reason he does not like that sensation (except diaper changes). I've told the doctors this. For pediatric blood draws they thought it'd be a good idea to start having the kids lay down. I explicitly told them my child has autism and SPD and WILL NOT lay on his back, so if they want the blood, they better let me hold him on my lap like we usually do. They said, "But he screams." I said "Yes, but you get the blood, don't you? If you try to get him to lay down, he will scream even louder, and you WILL NOT get the blood. Then we'll have to do it in the chair with an already worked up kid. You choose." They still tried to make him lay down, and I will only use the hospital lab now, not the military clinic one for him.
Oh, have I been there! We went through quite the ordeal when my Katie needed the drops, too. It took forever! Thankfully, our eye dr was great at listening to us, and actually *knew* there was something up with K right away, which was shocking, since she can be pretty HF. The whole eye test is hard b/c they want your kid to answer questions about what they see, and that is HARD for a kid with Autism. My daughter either didn't answer at all, or said I don't know. Again, it was a freaking miracle we had a dr who GOT it and didn't press. It is amazing that, as prevalent as Autism is, medical professionals still just have no idea. We have had some horrible experiences with nurses/doctors before...even some who looked at me as if I had 3 heads when I said the word Autism. Unreal.
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3 replies · active 689 weeks ago
They used to not even teach about autism in medical school so it's no wonder doctors are constantly missing things.

I bet they teach it now, though
Oh good lord...
That sounds horrific. And very familiar. I dread the day they have to put eye drops in my son's eyes. I'm gonna need a Xanax before THAT appointment! This is exactly how my son is about having his ears checked. One time, we had to see a doctor other than our regular pediatrician (who is marvelous and gets the autism thing) and he was so exasperated with Danny. He kept saying, "But, this isn't going to HURT!" I tried to explain that first of all, our ideas of pain are not necessarily the same as those with autism, and second, tickling Danny is worse than causing him pain. He'd rather get a shot than have someone look in his ears. The doctor just didn't get it.
I can relate. . . from a dentist' standpoint. Lily had her first visit about six months ago. It wasn't pretty. They at least listened to us. The dentist is well aware of Lily's issues and was really confident, but then in a stellar bit of overlooking. . . had her staff do the initial exam. The staff was NOT aware. Still, they handled it pretty well. Lily didn't love it though.
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I so relate to what you are saying! When we went for our EEG, I kept warning them that my son had autism and would not sit still for leads and they told me "Oh we deal with kids with autism ALL the time" You'd think. But NOT. It was horrible. So horrible I wrote to the hospital and told them how horrible it was. Health care providers say they know but they don't know. Kids are not just kids - and while lots of people get that, too many still don't. Thanks for this story and thanks to Jill for putting together this series!! Every bit of writing that gets to someone who doesn't know, makes everyone a tiny bit smarter...
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check with other Drs in your area. Mine has a machine that does the same as getting dialated with the drops, but you just look into it, and it takes pictures of the back of your eye for the dr to then examine. no dialatiing, no seeing funny for hours after - they charge a premium f0r it, its like an extra $25, but imho worth it for anyone to not have to bother with the whole dialating thing, let alone for a kid like your daughter
1 reply · active 689 weeks ago
Ours has that machine too, but for some reason, for her first exam, they wanted to dilate her eyes. They made a point to say they would not have to do that again for a long time. :)

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What are some good resources for learning what these kids need from us healthcare workers? I wasn't taught about autism in school, haven't run across any good continuing education about it. Just discovered this site yesterday, are there others I should be reading? Books? Suggestions for me? I don't want to make the experience any more difficult than it already is going to be -- even normal kids can make me dread coming into the exam room, not knowing if they'll be needlephobic or not. When I find out the child has autism, I just feel doubly worse because things can escalate so quickly and to so much worse levels. I know they can't help it, but if there's something *I* can help, I want to know about it, not just "This is going to be a challenge."

I love that you called the office beforehand. I try to call all patients before their test so that I can answer questions, and pediatric patients get my first priority, but not everywhere does that, so some parents will call us before the test to find out exactly what's going to happen to prepare the child. You may think you know what they're going to do by googling or previous experience, but protocols vary from place to place, and they change based on current evidence, so it's always worth a check.
1 reply · active 670 weeks ago
Thank you so much for ASKING! I have responded to your question here http://defining-normal.blogspot.com/2012/05/how-h...

I hope you take a look at it and I hope some other bloggers will chime in.
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Interesting....when I get an eye exam, the doctors usually don't need to dilate my eyes because my pupils, for whatever reason, are normally large.
I do have an autism spectrum disorder and my eyes have been dilated before. I dislike it but it's tolerable.

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