Complaining to “The Man”…

I want to thank all of you for your strong support in a really awful couple of days. Your support made it so much easier to get through.  This community is AMAZING!!

Because all of you have been through this with me, I wanted to make today’s post, the letter that is being sent to the facility where T went.  It has been edited slightly so as not to repeat myself from yesterday and to protect me…

Dear Person,

This letter is intended to inform you that I am formally complaining against the above-referenced personnel in your neurophysiology department in connection with the placement and removal of electrodes for a 24 hour ambulatory EEG on my five (5) year old autistic son.

I was both shocked and appalled at the complete lack of professionalism, compassion, basic care and communication skills of your EEG staff, especially upon learning that the worst offender was, in fact, the department head, Ms. so-and-so.  I am certain they failed to meet hospital standards and, very likely they have failed the standards of the Joint Commission on Hospital Accreditation.

Although no one provided me with your facility’s Patient Bill of Rights when I registered my son for this procedure,  I was able to access it via your website.  What I found was that there were violations of your own hospital’s standards in connection with the medical procedure involving both the placement and removal of my son’s electrodes for his EEG.

When we arrived for the placement of electrodes, [stuff from yesterday]  As an active member of the community of autism parents, I am quite aware that an EEG is a fairly common procedure for an autistic child.  I had expected that your EEG staff would have a professional understanding of the disability, how to handle a child with the disability and how to communicate with the parent of an autistic child prior to commencing the procedure.  They did not.

Your Patient Bill of Rights at Items 3 and 20 states that my son (and I as his parent and advocate) had the right to know the name of the persons with primary responsibility for his care as well as the names of any person who saw my son.  No one, and in particular, the Department Head, Ms. so-and-so, identified themselves to us at any time, except for Ms. Doe, who halfway through the placement procedure identified herself as “Jane Doe.”  The only reason we know Ms. Second person’s name is because she was wearing the nametag “Second”.

[Stuff from yesterday’s post]

…  She did not ask about his autism.  She did not ask about anything.  Instead, without any word to me about what the procedure involved, she got out a green marker and [stuff from yesterday]  I asked her how easy that was going to be to remove.  She looked at me like I was a complete idiot and said, “It’ll come off.  It’s water based.”

At some point, early on, Ms. Second walked in.  She did not introduce herself.  She whispered and spoke with Ms. Doe  Ms. Second asked me, “Why are you having this procedure?”  She also asked some other questions and I was actually wondering who she was, why she was asking me these questions and why she did not obtain this information from the referring physician.  She did not volunteer any of this information.  As I was pre-occupied with my son’s physical and mental well-being as he was struggling to fight the application of the electrodes, her timing was poor and her communication skills completely lacking.

My son was engaged in verbal stimming.  He wanted to see various TV programs and photos of certain objects to self-soothe.  Ms. Doe and Ms. Second attempted for probably five minutes to get a DVD of Dora the Explorer on a TV screen in the room.  They wasted a good five minutes fooling around with a DVD player while my son was terrorized on their gurney, verbal stimming.

None of the procedure was explained before the steps were performed.  We were not told what was going on my son’s head.  We were not asked whether he had allergies or skin sensitivities.  We were not asked if there was anything they could do or not do to make the procedure easier on him.

These women appeared to have absolutely no prior experience or knowledge of autism.  When my son started verbal stimming by yelling out colors such as “green” and “red”, Ms. Doe actually encouraged the behavior which only caused him further agitation.  Worse yet, she did not warn us about the smell of the glue she was using and my friend was getting sick from the smell. When I advised Ms. Doe that the smell was making her sick, she actually turned on two large fans directly behind my son’s head.  It was the worst thing she could have done for both my son and my friend. The loud noise of a fan directly behind his head where he could not see was terrifying and furthered his sensory overload.  You may not be familiar with this concept but my son also suffers from Sensory Processing Disorder which often accompanies autism and is exacerbated by sounds of fans, air conditioners, lawn mowers, blowers and hair dryers.  As for my friend, turning on the fans simply blew the smell of the glue straight at her and exacerbated her feeling sick.  We both told Ms. Doe to turn them off immediately.

As though this could not get any worse, the next completely inappropriate action by Ms. Doe was to try to stick a tube blowing air directly in front of my son’s face to show him what she was blowing on his head for the electrodes.  Anyone who has any regular dealing with autistic children (or any child for that matter) should know to ask the parent if that might upset the child before doing it.  Further, yes, it did upset and further terrorize my child.  He could not stop verbal stimming to soothe himself.  His entire body was full of goose bumps and he was in full- on distress by this point.

Meanwhile, Ms. Second was holding my son’s head.  Her fingers were so tightly on my child’s head that her fingers were turning white and hurting my son.  Your Patient Bill of Rights clearly says at Item 7 that my son had the right to be free from all forms of abuse or harassment.  The air blowing, fan turning, face pushing/holding, sensory overloading questions were all forms of abuse whether they knew it or not.

For me to explain that to them would have required that I stop the procedure halfway through when my son had already been soaked with whatever chemical solutions were placed on his head.   I would have put him through all that terror for nothing only to come back for it with the horror of this memory to contend with as well.  Add to that, I was trying to restrain his legs, find something to distract him on the iPad, calm him verbally and get the job done, and maybe you could understand why it was so difficult for me.

Once the whole thing was finished, without any explanation to me at all, the recorder was  placed in a very dirty-looking used backpack and put it on my son’s back.  I asked her how heavy it was and, rather than respond to me, she handed it to me.  I was floored by her behavior.

Next, I asked her how he was supposed to sleep with the backpack.  She looked at me like it was the stupidest question anyone had ever asked and said, “The same way he always sleeps.”  My friend was apoplectic at this point.  She felt that was the rudest thing anyone could have done under the circumstances.

Having completed that round, my friend and I returned with my son at noon the following day.  When we got to the room, the door was closed.  We knocked.  A completely different person was inside with the lights off and a patient in there.  It turned out this woman was Ms. so-and-so.

As far as Ms. so-and-so is concerned, the only reason I was able to identify her was because I sought, initially to lodge this complaint with the department head.  My legal assistant called your facility and asked for her name.  In order to assure we spelled it correctly, we searched it and located a photograph of her online.  I was quite surprised to learn that she was the head of the department but this may explain why there are such insufficient communication skills within the department.

In your Patient Bill of Rights, you state that the patient has a right to “considerate and respectful care that safeguards cultural, psychosocial and spiritual values” at Item 5; that the patient has a right to “be free from all forms of abuse or harassment” at Item 7 and “be free from restrains of any form used as a means of coercion, discipline, convenience or retaliation by staff” at Item 17.

Ms. so-and-so did not respect any of these rights.  She did not ever identify herself.  She was rude, bossy and completely lacked compassion.  …

Next, when my son (rightfully) did not want to lay down, she unilaterally decided she was going to strap him down.  He was beside himself with terror.  Strapped down, completely restrained, he cried nonstop.  …I tried to remove the restraints at one point and she said, “OH NO, I”m not done yet!”  You have no idea how this affected me, my son and my friend.  Truly, this was abhorrent behavior for which there is no justification or excuse.

…It was no better than torturing my child.

She was rough and harsh.  In fact, as she took them off she was scrubbing like she was cleaning a toilet.  She scrubbed so hard on my son’s forehead that both my friend and I saw my son’s skin lift up as she yanked away the electrodes.  I have never witnessed anything so rude and hurtful in my life.  I think an animal would have been accorded more respect than my child was.  She barely covered his eyes when she got near them with that solution and never once apologized.  I will never get those images out of my head.

…Truly, this was definitely the worst medical experience of my child’s life.  I gave birth to him in your hospital and was treated very well.  He has been in the hospital for tests for pneumonia and to the dentist but has always been treated with respect and as a parent, I’ve always been told each and every thing that would be done to him before it happened.

I don’t know what you intend to do with this letter but I demand an apology and to know that steps are being taken with respect to these staff members.  No special needs child or their parents should be subjected to the rude, unjustified experience I just went through at your facility.  I thank you for your anticipated prompt response to this letter.  Should I not hear back from you in short order, I will forward this complaint on to the appropriate licensing agencies for resolution of the issues raised herein.  Should you have questions or wish further information, please put such requests in writing to me.

“Love and Kisses”  from me…

I’ll let you know if I get a response.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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26 Responses to Complaining to “The Man”…

  1. Tootleslady says:

    Take that B****ES!

  2. That is a PHENOMENAL letter. I must have missed your blog about this. (going to read back next). What a TERROR! I am so very sorry that you and your son and even your friend had to experience that. I hope your son has recovered. However, when we had someone attempt an EEG with Tommy (I let them try for about 20 min then get the people AWAY from my son) he’s always terrified of that test. He was able to get a significant EEG a few months following. There are actually people that ARE compassionate and patient out there.. this woman sounds BARBARIC! I really hope you get a response to this. I’m certain you will. I’ve GOT to go read what happened! Again, I hope you’re all feeling better now 🙂

    • solodialogue says:

      Thanks Rhonda! I’m sorry Tommy’s attempted one had to be aborted but at least you had your wits about you enough to stop it!! I will feel guilty about that for the rest of my life! It’s good you got it done in the end. I know there have to be lots of good and compassionate people who can perform this test but as luck would have it…I did not get any of them… Will definitely share any response here.

  3. Jen says:

    Yes!! Way to use those law skills, Mom. Excellent letter and you better be getting a personal apology ASAP. I can’t wait!

  4. Karla (Mom2MissK) says:

    Really hope the letter gets some results… You really deserve that apology and the rest of the patients who use this neuro department in the future deserve changes!

  5. Grace says:

    OMG woman, you ROCK!! Way to invoke JCAHO! That should put some fear in ’em!!

    And may I just say how much I admire you for doing this, because goddess only knows what kind of agony you may spare the next family that needs an EEG.

  6. GOOOOOOOOOOOOOOOOOOO Karen V.!!! Well done.

    And thanks for giving me something to think about- that sensory overload/extreme questions can be a form of harassment for our kids. People do this to A. ALL the time. He starts singing his worried or angry version of “Happy Birthday,” they start badgering him with questions about when his b-day is and what kind of presents he wants (which he can’t answer b/c he’s nonverbal), and they refuse to listen to me when I tell them that he’s singing that song because he’s anxious and they are making it worse.

    Let us know what you hear back from these people.

    • solodialogue says:

      Thanks Christy! I don’t know why people have such a mental block about listening to us when we tell them they are overloading our children with their questions! That’s a topic that deserves it’s own time. (I will let you know what the response is…)

  7. Amanda says:

    How dreadful. I’m glad you spoke up!

  8. Lizbeth says:

    “Love and Kisses.” That just made me snort my Diet Coke. That’s great, Karen. Each department in the hospital can be so different based on who’s in charge. I hope to God this woman gets drug down to the main office and get her own electrodes placed and ripped off. You know, right before she gets canned.

    Well done.

    • solodialogue says:

      Diet Coke?! Lizbeth, is that really you? LOVE your idea about giving her a placement herself – I know just the team to do it and remove it. And yeah, if they canned her? That would be so sweet!

  9. Aspie Mom says:

    GREAT!!! Thanks from all those who follow you!
    If it was the schools you could demand appropriate “training”
    Wonder what you ask for at hospitals…

  10. Aspie Mom says:

    PS I overreact to these horror stories because I have so many memories of the times I sat and watched someone torture my kid and didn’t put a stop to it.
    Even though my husband and I are always both there, you need yet another dispassionate person to be the medical advocate. We are so involved with our kids, frantically working with their emotions to get them through. It’s impossible that we could also stand back and make that decision to say.”I’m sorry, but I don’t think this is working for my child. I’ll need to see your supervisor please. NOW!”
    It’s impossible for one person to do both jobs. You can’t feel guilty about it.
    But we do have to live with those awful memories.

    • solodialogue says:

      What you say here was exactly what I went through! I was trying to calm my son and could not stand back and say that I had to stop the procedure and get a supervisor. I do still feel guilty about it and will have to live with that little face crying out for help from me. But I can try to stop it from happening to the next mom.

  11. Julie says:

    Go Warrior Mom!!!!! Kick their asses! Man, they messed with the wrong people! I can’t wait to hear the response.

  12. ElizOF says:

    Excellent letter and please keep us posted… Ridiculous… they have some nerve to treat a kid in such a disgusting way…

  13. They picked the wrong mama, didn’t they? Looking forward to seeing what comes of this letter!

  14. Broot says:

    Awesome letter!!

  15. nrhatch says:

    Wow! That is appalling behavior. Just shocking.

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