Mother fights school for DNR for son. What say the Peas?

I've been there, done that. Am I glad it was done? Absolutely. Would I want it done again? That's the question. Brain injury already existing, another significant time without oxygen could leave me catastrophically impaired. I wouldn't want that for myself or my family.

Im navigating this world I now live in.

your DNR must be properly filled out, motorized, & legal. It must be easily located (refrigerator, wallet, or both), family must know and acknowledge your wishes.  Saying you don't want DNR is not enough. 

My Mom has chosen the route if a DNR if a cardiac arrest should occur, my daughter waffles in her choices, I'm more of the opinion if I'm seen to drop offer aid, if I'm found without knowing the time, wait another 20 minutes before calling 911. It's hard. 

I have a lot of other health problems, have had the adenozine and threat of shock several times and have a phobia of electrical shock. Shocking me isn't going to fix my heart, either.

ETA: I have a patch in my heart between the two upper chambers, I have a sick sinus node that causes sinus tachycardia and arrhythmia. I'm not allowed to exercise at all. If my heart rate gets elevated it is difficult to get it to go back down. If it stays elevated, I have to go to the ER where they give me meds to help. If the tachycardia causes an arrhythmia, I have to get adenosine--the pharmaceutical kick in the chest (I've actually been kicked in the chest by a horse, and it feels the same) and sometimes that doesn't want to work. It's hard to relax to get my heart back to normal when I'm freaking out about them threatening to shock me when I'm awake. (I did get them to give me a bit of versed last time they gave me adenosine) 

I also have a mitral valve prolapse. I can hear the valve clicking when the room is quiet or when I'm leaning over the sink to do my eye makeup--because my mouth always pops open. 

With my other issues and blood clot disorder, ANY surgery is risky for me. Heart surgery would be horrible. I'd love a breast reduction and my doctors have said it would greatly reduce my neck and back pain, but it's too risky. The only way they'll do it would be if I get breast cancer. I'm very high risk for that between family history and the DNA damage the DES medication my birth mother took trying to abort me. I'm afraid of getting the DNA test because the chances of finding a surgeon that would do a prophylactic mastectomy is extremely low. I'd have to go to Johns Hopkins or Mayo. My doctors and I have discussed this. I waffle on getting the DNA test because it would just stress dh and me out more waiting for that shoe to drop. I already get all the screenings needed for a high risk patient. 

I know I need a written power of attorney and medical directive, but it's just something else to add to all the medical stuff we need to do. It gets exhausting. My dh and mother know what my wishes are. 

Hospitals offer help with a POA and directive when you're admitted. I keep asking for someone to come help me when I'm in the hospital for acute pancreatitis. Nobody ever comes. Paying and dealing with a lawyer is just something else to add to dh's stress.

I'm so glad that the defibrillation worked for you! I've thought long and hard about what I want and have discussed it at length with dh. His grandmother was a heart patient and died of heart failure. She had to be defibrillated once and immediately signed a medical directive and told everyone she never wanted another one. My grandfather also lived his whole life with heart problems, and it was so hard to watch him have no quality of life for several years while diabetes and heart disease killed him.

ETA2: My stepmother's attorney had a heart attack on the road in rural NC. He was driving to the hospital and called 911. They met him on the road and got him in the ambulance. He had cardiac arrest. They had the new CPR vest. He was without a heart rate for over 20 minutes. They got his heart rate back after that, but then he was in ICU on a vent while they figured out if he would have a meaningful recovery. He came back after almost a month and has NO mental deficits. I really think God gave him a second chance because he was the type of lawyer that lawyer jokes and stereotypes come from. My dad used him for legal papers that needed a lawyer, but those were papers where my dad knew as much as the lawyer. My dad called him a liar to his face and really didn't like him at all. We just lived in rural Eastern NC and didn't have a lot of choice. 

I also worry about having another stroke and not being in my right mind. (I know I shared how close I came to suicidal euthanasia a few weeks ago, but I was going to shoot myself in the heart/aorta. My veins are very fragile so the chances of recovery would have been very slim)

I do hope threads like this will make it easier for families to bring up DNRs, medical directives, last wishes, etc. My parents went through this when my grandmother was diagnosed with advanced Alzheimer's and made out an advance directive. You have to be very specific about things like feeding tubes, etc. My grandmother's doctor put in a feeding tube for something short term at the beginning of her illness, but what they don't tell you is how difficult it is to get it removed. 

I've told my dh I don't want a feeding tube. I'm not thrilled about nasogastric feeding, but I might consider it. People can last for years with a feeding tube. 

1st, my guess is this is more an insurance and money issue than anything else. I would think that the district can't let the mom be there in charge because of a liability or legal issue.

2nd, staff should be semi-trained in what to do in an emergency. We would clear the room of all students and our school would go into what we call "Hold" meaning no students in the hallway. This would remain in place until the ambulance left.

3rd, many staff members are CPR/AED/First Aid trained. We are on a team and while it is preferable to get the nurse, she is not always there. I don't know how I would react if the child were to be in my classroom. I am trained and my first instinct would be to start CPR.

But my main point to the people saying to keep him at home, this is a CHILD who probably doesn't have a lot of life to live. Why would we deny him the chance at some normalicy or being able to socialize with his peers? My thought is that if they can get by any legal issues, let the kid hang out with friends.

I don't know what the chances of the boy dying at school are, but we don't make other kids with life threatening issues stay home. Nobody is telling the kid with peanut allergy to stay home because it would traumatize his classmates if he were to have a reaction.

I hope there is some way for the two sides to come together and let him go to school for the limited time they are asking

He could socialize in the hall, before and after class, during classroom discussions and group work.

As much as I am sad for the family's plight, the problem is, a very valid reason to deny any one of these requests would be the potential detriment to the school environment - or because it is not the right accommodation for the situation at hand.

Not knowing the scenario and not knowing the individuals involved no one can say one way or another. But my concern would be that four hours a week (the amount of time cited in the thread as the parent's request) is half a day, or ten percent of the instructional time in an average school week. What is the mom hoping to gain from that time? Is sitting in a classroom during instructional time "hanging out with friends" and does it accomplish what mom is trying to accomplish? What is she asking the teachers and staff to do for her child in that time? Could four hours of social time per week be better acquired outside the school setting, and with fewer encumbrances? What classes is she hoping he will sit in on during his four hours? What impact does that have to the other students in those classes?

I'm normally in favor of making more accommodation than less. My inclination is always to say yes. But you have to ask the right questions. If we are talking about lunch, study hall, and a social skills class - maybe the impact is low and the benefit is significant. If we are talking about math and English maybe the impact is significant and the benefit is low. Often the accommodation given is different than what the parent envisioned for a variety of reasons.

So compound that with the DNR issue and it's not as simple as "why wouldn't we".

so I read the two articles linked in the OP.

First, the ending quote at the bottom of the first article is false. At least in my state, don't know if it is everywhere else. A child does not have a "right" to attend a particular school. A child has a right to an education. He is currently receiving a free, public education through the hospital/homebound service. So this isn't a matter of rights, it is a matter of ethics.

Second, the boy cannot speak. This leads me to believe that he is in a self-contained classroom. If he is in a self-contained classroom with other autistic students, any change to the daily routine would probably be very distracting. Mom sitting in for four hours on her day off would most likely be a problem for the classroom - teachers and students alike. In my district parents are allowed access to their children's classes, by appointment, IF it does not cause a distraction.

Last, what is it about being at school she thinks she's going to accomplish? If her son's heart stops beating is she going to get in between him and the school nurse to prevent CPR? What "power" does she think she would have, physically in the room, that she wouldn't have from a distance? If I'm not going to abide by a written DNR that she has provided to the school, then I'm not going to listen to her words if she's next to me either.

I hate that she's in this position. I can completely understand not wanting to see your child suffer any longer. I just don't think school is the right place for these quandaries to play out.

THANK YOU! I had a whole long response typed out, but you said it better than me! I don't know his entire situation, but the article said he is non-verbal, so I would think the majority of his time has been in a self contained classroom. My only issue I do have with this is the mom attending class. I know when I'm in the classroom briefly, it is a big distraction to the rest of the students. For some reason they are fascinated, I'm his mom and keep asking questions.

I think a nurse who is his aide would be the best compromise. There are NO nurses in any of our schools. If a school can't or is not legally obligated to provide one, then I would keep my son at home. I really don't know the laws on kids with medical issues. My kids have cognitive impairments.

FTR, Sometimes parents don't get a say about how their kid is mainstreamed into a regular classroom. My son has a "1st grade teacher" he goes to P.E. and "participates". Sometimes it is a district or state decision.

Thank you theshyone I'll look into it!

Thank you for your perspective as usual rst my oldest has gone to school with a boy with autism, non-verbal and he doesn't really interact with classmates, since kindergarten. They're in same AP Calc class now. Even without interaction, they would miss each other's presence.

Maybe my snowflakes aren't as precious as some, but as the mother of two teen boys I think they could be prepared for possibilities. The more likely scenario of kindness outweighs any trauma they might experience, and they could be prepared/ forewarned it might occur.
One is a life guard, so something tragic could happen there. They both have some extreme activities and hike without adult supervision. I never want them to need first aid or cpr skills but there's a reason they have the training. Knowing it might happen with a classmate would be less severe than a surprise at the pool.

i know there's one family in our neighborhood that would be ugly and protest a student like this attending, but I suspect most would be supportive and use it as a growth opportunity for their kids.

An AED can't be used if they aren't there. That was my point. I have heart friends fighting tooth and nail to get schools to get AEDs where there heart children attend.

I'm glad you would step up, I'm glad your school has an AED within a minute of any emergency, I'm glad your teachers are trained, I'm glad every sporting event, practice and get together has an AED on the field at your campus.

If we could multiply that by every single school in the USA then use that as a example and standard for Canada, UK, Australia, and everywhere else I'd be much happier.  The fact is the majority of USA schools don't. But State by State it is happening. School by school it will happen. Maybe not in time for my friends children, but in time for their kids. 


In the meantime children and youth will die. Both undiagnosed and diagnosed. 

Somehow, this has turned into a discussion where some are deciding, without knowing the plan, that it's inappropriate for this student to attend school only a few hours per week.

Attending school part-time is not unheard of. It's uncommon, but it's not unheard of. I was in a classroom just yesterday where some of the students attend part-time. Even when they're at school, medically fragile students leave the classroom frequently for therapies and treatments. (And because it relates to this discussion: Two of the students in this class had one-on-one nurses.)

Regarding this student's right to attend school: I've finally read the articles posted, and the district is objecting to the no-DNR and the mother's attendance. It seems they're not objecting to him attending school but we really have no idea how often the district thinks he should be there. The four hours was suggested by the mother to fit in with her work schedule. Absent the mother's attendance - which won't fly, anyway - the four hours is probably moot. Regardless, even four hours could make a world of difference to this kid. 

pjaye, thank you for the medical explanation.
rst, your posts have been spot-on. Maybe you changed some hearts and minds. 

This is a heartbreaking situation. I have great compassion for your friend and her son. What they're going through is cruel and unfair.

Having said that, however, I don't believe that it's fair to negatively impact the lives of many other children and adults because this mother believes her son's right to attend school trumps everyone else's right to attend a school that is as free of distraction and potential trauma as possible.

I think that inclusion too often comes at the expense of "neurotypical" children or children with lesser needs.