[NICU32RN]

I agree, I'm also a special needs parent and often I don't have what I need, but I'm flexible w/ formula sub for a short time. I took offense to that comment too.

[rbs105]

I think many would be surprised to know that ALOT of us here are parents of special needs kids. Parents are a pain, but they are also your greatest asset....

rbs105

[canoehead]

rbs105

Thanks, you said that so nicely, but so effectively.

[smanion]

Originally Posted by rbs105

My first question to all of you is, are ANY of you parents??

Second question: are any of you parents of kids who have special needs?

B4 you get fired up, please read my entire post. I am an RN who is a parent of a child who is deaf/blind, tube fed, has had many surgeries, cannot breathe at night without the help of bi-pap and has been rescusitated multiple times. I have slept on hospital floors, ridden in backs of ambulances and have been there and done that like you wouldnt' believe.

Now I want to add that to an extent, I agree with you. I work in the OR and in pediatric rehab and get annoyed when parents bark orders, don't show up, don't shower, etc. etc.

However, I disagree with a few things. To the RN who is so critical of the parent who shows up without the "12 additives for their child's tube feed". Do you know what the circumstances were when that parent flew out the door and ran to the hospital? Forgive me, but whenI am racing off to the ED because of difficulty breathing, the last thing on my mind is to grab the correct size of tube or formula. Frankly, I think that a major children's hospital should have it.

To those of you who are so threatened about being told by a parent what to do. I have told many doctors and nurses, I appreciate that you have been studying/doing medicine/nursing for ___# of years, but I have been studying/doing THIS child for 10 years. If I tell you that it is best to get a BP in his leg, I am not trying to be bossy, I am just telling you that you are wasting your time to get it in his arm, and I know this from experience.

PLEASE, I understand that the parents are the most frustrating part of pediatrics-I work there too, but PLEASE take a minute and TRY to see the world through their eyes. At one point, b4 we got respite services, the only chance I had to even pee without him in earshot was when he was hospitalized. The one time I left him in the hospital alone, I came back to find out they had nearly killed him because some cocky resident and RN decided they knew what was best and ignored what I had told them.

They are SCARED, they are intimidated, they are not sure what is happening or what the outcome will be. This is their most precious possession (usually) and you can only relate when you have gone through it. OK, there are some that are complete dumb a**'s and you question why they were able to procreate.

We appreciate your patience and understanding and you really make a parent's day when you just listen and try it our way-even if it may be ridiculous in your eyes. I became a nurse because I REMEMBER the RN who sat and taught me with great patience to put in an NG tube while I bawled my eyes out and she reassured me that I could do it. You NEVER know what a difference you are making!! Thank you for your patience and EVERYTHING you do!!

rbs105

Parents like you don't bother me one bit... I actually appreciate a parent making suggestions on how to treat their child, as you said, the parent knows them best. I try to ask parents what will work best for their child and what would make it more comfortable for them. There is such a big difference between a parent who is doing such thing out of concern for their child and a parent who just wants to annoy the nurse, or maybe just doesnt know any better. Who knows... Though I do wish more parents would take an active role in their childrens medical care like you have.

[smanion]

I guess I should also add that yes I am a parent and I will watch everything a nurse or Dr. does to my children. And they better make sure they do it right haha!

[scribblerpnp]

For the most part I LOOOOOOVVVEEE the parents of special needs children. They are usually educated and INVOLVED. They know their kids and what they need, when they need it, and how. Very rarely do I find them a pain.

I wish there were more parents like them out there.

[rnsrgr8t]

I have worked in peds for 10 years and I have no problem with parents like you. These parents of children with special needs DEFINTELY know more about their child than I do. They are their child's only advocate and these children are very complex. It takes very little to get them out of balance. I agree with most of the posts here and often vent about the same things. Parents like you never bother me. I do not feel threatened at all by parents who are very involved with their child's care. If they want me to do something and I can do it and it does not interfere with their child's care, absolutely, no questions asked. I am often in awe at what parents like you have to deal with on a daily basis and what a great job you do!

[gentylwind]

I'm just a student, but am becoming a nurse because of all the great nurses who were compassionate to how hard having a chronically ill child is on the family (my son had AML. Sadly he passed away a year and a half ago). We spent literally 8 months straight as an in-patient. Yes, they DO need to make the sleepers more comfortable. All it would take was one administrator in the know and with the power to do something about it to be made to sleep all night on one of those suckers to realize how awful they are. We parents used to joke they just wanted to get us to the ER for back problems. Made helping care for our kid very hard when we could not sleep. And yes, I did expect the nurses to be as efficient and quiet as possible during the night, to not flip the lights on but to use the bathroom light whenever possible and to combine nighttime visits to hang chemo, gets vitals and administer meds as much as humanly possible so that we could get some rest. I realize it was their work day, but for the rest of the world it is still night time, and as the family, we were still trying to care for our other children and keep our jobs outside of also trying to care for this very sick boy. Rest was VITAL. Most of the nurses were awesome in this regard and frankly loved us, because we were not leaning on the patient call light all night. We wanted them to do what they had to do and move on. Granted, I often did his vitals myself and recorded them for her on the board and I was more than happy once he was ventilated to help change his diapers etc. But it was the ones who realized I was at the end of my rope and took the time to put an arm around me, or who let me be as active in his care as possible that really inspired me. Joseph was absolutely hateful to the nurses..he took all his anger about his cancer out on them. I didn't use them to threaten him and would make him apologize, but they were kind and never seemed to take it overly personal either. He just was flat out not interested in bonding with them..in his mind, he was getting well, getting out of dodge and never coming back.

Anyway, I am rambling. Just really appreciate the nurses who see and saw it from the family's point of view. Having a child hospitalized for an extended amount of time is devastating to the family, emotionally, spiritually, physically and financially. There is a saying that when a person has cancer, the whole family has cancer. I am sure it is true for other special needs/chronic illness problems as well. Thank you to those who are patient, loving and who let me help. You saved my life while Joseph lost his.

[ashemson]

I recently started working in a peds office in a clinic. So far the things that really drive me crazy about peds is the parents of children who are on a medication that they get refilled monthly. They wait until the VERY day their child is out of their meds to call for a refill. What they don't realize is that I work for a doctor who takes alot of days off, so she isn't in the office all of the time, then they get mad at the nurses because we can't produce a script on demand! Also, PLEASE tell your 5 year old child who is coming in for their kindergarten physical that they are having shots before we walk into the room with them! Alot of parents whisper to us that they don't know they are getting shots, so it's up to us to break it to them...UGH!!!

And yes, I have three children of my own! haha

[AirforceRN]

I have been fortunate to have been able to do a quick rotation through peds as part of training...a few things I learned...

1) I know NOTHING about children's medical issues. (Kudos to you nurses who have learned to work with what are essentially little aliens)
2) Its okay because new parents know even less.
3) Parents know their kids better than I ever will. If they say Johnny "isn't right" or its easier to get the meds down "this way", chances are they are right.
4) Parents will tell you a 20 minute story about a tiny scratch and then expect treatment in under 5 minutes.

Interesting but fun