Struggle

I have debated writing this post for over 24 hours. In the end I decided to write it, not because I can’t handle the situation on my own, but because it happened to me, because it feels wrong although I can’t put my finger on why, and because you guys often help me sort through what I’m thinking. So here goes. Would prefer not to get called to the principal’s office over this one, but I guess you sometimes have to pay a price for speaking publicly about your life.

I couple of weeks ago, I mentioned that I had a couple of contractions and that worried me. In addition to that, I’ve gotten big enough that walking the five blocks down to Charlie’s school in the afternoon and then pushing him back was starting to feel like an Olympic sport. By the time we got home, I would have to lie on the couch to recover.

So we decided to hire someone to help get Charlie home in the afternoons. He could take the bus, but as I have discussed before, the bus’s are un-airconditioned and I have no way of knowing how long he might sit there, unmoving, until the bus got rolling. Since Charlie’s neurologist believes over-heating could lead to a seizure, I decided this wasn’t a solution I was comfortable with.

I went to school and spoke with one of Charlie’s aides. Her daughter is a high school student and thought she might know someone who was looking to earn some extra spending money. As it turns out, her daughter is interested in children with special needs and she was interested. Perfection! I’d already met her daughter who seemed like a nice, responsible kid, and it’s a bonus that she’s already interested in/comfortable with the special needs population.

For a week and a half, my husband or I would meet her at school and walk with her as she pushed Charlie to our house. Seriously, this is not difficult stuff. I say it’s five blocks because one of them if very long. The truth is that the school is three and a half blocks from my house. So close, that every year the Kindergarten parade come within a couple yards of my doorstep.

Things have been going well. I’m more relaxed and rested in the afternoons–I’ve even managed to cook a few times. And then yesterday I got a phone call.

boy in pink rocking chair smiling at the camera

Apparently the school nurse had been by for a visit and was there when our helper-girl had gotten ready to take Charlie home. The school nurse did not like this arrangement. She went to the office to make sure that our helper was on the approved list. She was. I, as Charlie’s mother had not only put her name on the list, but had also mentioned it to the school secretary so that she was aware. I handled my end of the deal.

Despite having filled out the requisite paperwork, the school nurse STILL wasn’t happy and went to talk to the principal about this. Her big concern was that Charlie has a history of seizures.

Principal thinks long and hard about this (I wasn’t there, so I’m guessing) and determines that the only issue is one of liability. It needed to be clear that the girl I hired was not a school employee that they were not responsible for her actions. This is utter silliness–I hired the girl, she’s a high school student–there’s no way she could be mistaken for a school employee. But, as the relative of many, many lawyers I understood the instinct to cover your behind.

So I wrote the note and still I’m left with a funny feeling. A feeling that things are not right. From my perspective:

  1. I should have every right to determine who picks up my child from school. To call into question my decisions feels as if someone is calling into question my ability to parent, which makes me batty. My house may be a mess and I may only cook dinner a third of the time, but I do right by my kid and have every faith in my ability to make decisions about his welfare. More importantly, I’m not sure who gives the nurse the authority to question these decisions.
  2. I really don’t see what seizures have to do with anything. Charlie is too young for an emergency injection and all of his previous seizures (last one at age 6 mo.) have been the kind that barely look like seizures. The girl who walks him home has a cell phone, so she can always call me. Besides, the age of the person pushing the chair will have absolutely no effect on whether or not he has a seizure.
  3. I don’t like that I have to fill out more paperwork than anyone else. If it were to receive a service from the school, I understand that, but this is the simple act of having someone pick him up. I’m sure that other families are not forced to do the same.

So here I sit. Wondering if I should have done differently. Wondering if I should have fought the extra paperwork.  Hoping that I haven’t given in to something because it’s easy without thinking about the full repercussions that decision may have. Confused about access to school records, who has what rights, and not being sure exactly how much of Charlie’s personal information is being handed out willy-nilly.

Parenting is never easy and this is one of those days where it’s actually making my head hurt.

side view of boy sitting in a rocking chair outside

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Comments

  1. My personal opinion is to tell the school that if you go into labour or have complications as a result of you having to pick Charlie up to walk him home, then you will hold the school liable. It is absolutely ridiculous that they think they can dictate who can pick up Charlie from school.

    I can understand why you feel uncomfortable in writing a note – i personally wouldn’t and would be telling them to stick it somewhere the sun doesn’t shine.

    • I wrote the note, but my husband was supremely aggravated by the whole thing. He felt that the burden shouldn’t be on us to come up with “paperwork” that doesn’t really exist.

  2. WOW-
    I am not even in the school system anymore and I want to apologize for you having to do that. I used to teach kids with special needs and paperwork sucks- for teacher and parents. Being a mom of two typical (but sometimes crazy ha) children, I question my parenting all of the time. I think that’s a natural thing to do. This just popped into my head for some reason- write the school nurse a letter. Thank her, but be SUUUUPER sweet and warm fuzzy about it. Thank her for her concern and that you appreciate her caring for Charlie’s health and that as HIS mother, you are glad that she is a part of Charlie’s circle of friends. Maybe by getting that letter, she will be so overflowing with love and happiness that she will forget what a control freak she is. Good luck to you and way to go for watching out for YOU too! Gina

    • Gina-I SO wish I could do that, but I’m still feeling a little ick about the whole thing–maybe when I’m feel less icky, I’ll try that.

  3. It always feel awful to have to go through this kind of ordeal, especially when it wouldn’t have to be one. You have worked out a very reasonable solution. I think the school must be feeling a little guilty for not transporting him via bus. With a letter from neurology that Charlie needs A/C I think the school should be held accountable for providing bus transport with A/C.
    You worked out a good solution, don’t let the nurse frazzle you.

    • Well, Beth, after oodles of research, I am fairly certain the school would have to provide an air conditioned bus, if we requested it. I just didn’t know about it being un-airconditioned until after the school year had started and felt it would be too much of a fight. So I guess I’m doubly aggravated because I tried to do something simple and I’m being given a hard time.

  4. Oh Katy. How absolutely stupid. Of course, you are the parent and can decide who picks up Charlie from school. This makes absolutely no sense whatsoever. But…if it had been me, I would have just done the paperwork…like you did. I might have been seething inside, but I would have done it.

    On the other hand, I’m so pleased that you have someone to bring Charlie home from school. She sounds like a God-send!!

  5. Adrienne says:

    I think I shared your week. I was asked to do some extra documentation for my son at school. I voiced my experience that it is very easy to over complicate things with my son but I try to check the urge. Keep it simple (but instead it’s usually cover their a**). Sigh — like we have spare time for their paperwork.

    • That was my husband’s attitude–like we don’t have enough to do without adding other stuff to the top of the pile.

  6. Adrienne says:

    I think I shared your week. I was asked to do some extra documentation for my son at school. I voiced my experience that it is very easy to over complicate things with my son but I try to check the urge. Keep it simple (but instead it’s usually cover their a**). Sigh — like we have spare time for their paperwork.

  7. I agree with what others have said and would have done the paperwork. I also think I would have talked to the nurse and told her that if she has concerns for my child then she should always call me FIRST.
    I think you are lucky to find a good, responsible, high school student to help out with Charlie. I haven’t had any luck in finding someone like that! It is a very reasonable situation and I think you did a great thing. You are a wonderful mother and don’t let the school ruin your mood over this!

    • Thank you, Debbi. I should just chill, but you’re right–perhaps I should let it be known that I need to be called if there’s an issue.

  8. Good Lord, what is it with school nurses? The 3 reasons you stated are valid & should be known to the nurse & principle. It is all the reasoning they need., heck, the first sentence of reason one is all the school needs.
    The nurse needs to be reminded that his last siezure was at 6 mo. & therefore she has not seen him have one (if I’m understanding this right). Her concern is mute.
    Once Charlie, you & your helper leave school property, the school is no longer liable. I’m having a hard time understanding the whole liability issue when you or your husband is there with the helper.
    I would keep an eye on that nurse, I can understand the need to be all warm & fuzzy, but I have a hard time being warm & fuzzy. She has no reason or right to be a control freak which is what she was doing after checking that all paperwork was done. I think she was out of line by going to the principle.

    • I guess I wasn’t clear–we don’t walk with her any more–we just did it for a while to make sure there weren’t any issues. I still think she was over-reaching–all my paperwork was in order and I had already talked to the teachers about it.

  9. First of all, when did Charlie become a BIG BOY?? Sheesh! He is really rocking that big boy haircut nicely! Love it! So grown up!

    Second of all, you are an amazing mother. Period.

    The bottom line, in my opinion, is this: In spite of paperwork and whatever hoops you have to jump through (even though it is a pain is the butt and you shouldn’t have to do it), is Charlie getting what he needs? If the answer is yes, then writing a note so that the school system can cover their precious butts is worth it.

    So great you have found a trustworthy young lady to help out!! It is hard to let people help sometimes, I think.

    • You are, of course, correct. I think that sometimes I’m over-vigilant in protecting Charlie against what feels like an invasion of his privacy or rights.

  10. I would be livid, too.

    There are moms you can tell are on crack, picking up their kids from Eli’s preschool….if someone questioned me over something so simple I’d bust a nut!

    Stay strong. You are the parent. Fight with as much energy as you can….

    • Yeah, Amy, a friend of mine said the same thing–off all the things you see in a public school, a responsible teenager taking a kid a few blocks down the street shouldn’t be a big deal, but I guess it’s all about who you ask.

  11. Carolyn says:

    Why are there so many know-it-all nurses out there anyway?! I find some of them like to tell you what to do more than doctors. I think it’s great you found a helper and your reasons are excellent. How dare they make you have to question your own already well thought about decisions! About the bus, I agree about the doctors note. Our bus driver told me we could get an air conditioned bus on the IEP with a doctors note for seasonal allergies. We didn’t, but you reason is more serious and your weather much hotter. (I’m in NY)

    • I think we could get an air conditioned bus. The ironic thing is that I chose to hire someone because I thought that would be easier than going through the school board and trying to get an air conditioned bus for the last two months of school. Shows what I know.

  12. In my opinion the nurse overreacted and caused the principal to overreact. At this point it sounds like it’s done with so leave it at that. It was definitely dumb that you had to do extra stuff in order to have someone YOU chose pick up Charlie. I just think you have more important battles to fight and bigger things to think about.

  13. Your school nurse sounds insane. I agree, it shouldn’t matter what age the person you hired is as long as she is responsible – the fact that she is in high school and already interested in special needs kids is kind of amazing in and of itself and should speak highly of her character and maturity.

    • When I was her age it was all prom dresses, so-and-so’s new car, and water ski weekends. She really is a gem.

  14. What unnecessarily complicated drama.
    I’m so sorry you have to deal with this on top of everything else.

    *internet hug from a stranger*

  15. Ugh! I can’t tell you how many times I’ve had issues with schools about my kids… and mine aren’t even special needs. Parenting is hard enough without other people and school officials making it seem like THEY know better than you what’s best for your child. It sounds frustrating but as long as YOU are comfortable with your decisions, that is all that matters. Yes, schools have to cover their behinds, but don’t let it weigh you down. You know your a good Mom… and you have to take care of yourself as well.

    • Thank you, Carolyn. You are correct–it’s just hard when someone you barely know if questioning your decisions.

  16. MelissaInk Designs says:

    I’m sorry you and Charlie were singled out like this. I would hope that the initial response was out of concern for your son ONLY. It might also serve the purpose to cover their butts, but (trying to believe in the good of people) their reaction was originally for Charlie for not for themselves. Also, on some level, I guess protecting the school is also part of protecting Charlie … on some level way up there.

    • Ahhh, Melissa, you are SUCH the better person than I am. You are right–I’m sure the initial motivation was a good one–I just can’t imagine making the same decision in a similar situation.

  17. Maybe the school nurse would like to walk him home. Offer her a buck!

  18. I would hope the nurse was just thinking of his well being but yeah, kinda think it’s none of her business who you choose to have pick up your child. Geez.

  19. As one of the other commenters said – this may not be so much about Charlie being special or related to an IDEA rule. Personally I think it has to do with a single person – whatever her agenda.

    You could have told the principal to cite the regulation requiring you to do more – alongside a suggestion that she write something extra. You could have.

    A long held maxim in parenting is: choose your battles. This maxim comes to my mind when dealing with the school our child attends, too. Your head might feel better if you decide to let this one go, a battle left unfought, all the while knowing it may not be the last.

    • You are, of course, right, and in this case it was easier to just write the note and let it go. I just get SO WORRIED that if I give an inch that they will take a mile.

      • That feeling that you are being taken advantage of (or specifically targeted) – so bad! Hate that, too! The slippery slope (take a mile) is a common big fear, too. Thank goodness (again) for the blog and fb forums to self-treat our fears safely, eh? Another method, which you probably already do – maintaining your own paper trail of inch-injustices – perhaps in a separate folder and easily organized for reference on that day you participate in the ‘evaluation’ (state audit) of the school, principal, nurse.

        Just another thought – ‘they’ are likely fearing you taking a mile, too. Funny how it works both ways. Consider disarming the nurse by going in to thank her for giving your child ‘special’ protection. She just might get off your case (and onto someone else’s depending on her agenda). One battlefront bastioned. Or not.

  20. Sounds like my elementary school. In the Great White Canadian North we have school skating. My always used to come and help because she wanted me to be able to participate, and the school was apparently incapable of figuring this out on their own. She’d drive me (the other kids walked) the 2 blocks to the skating rink along with my powerchair and pommel walker (picture the 1990s ghetto version of a Pony Walker) put on my skates etc. All without one speck of concern from my teacher or aide. Then, one day it was a relatively nice, sunny spring day and she decided we could walk instead. We had to momentarily go on the street to avoid a snow bank. She was obviously right beside me the entire time, and we’re not talking about 5th Ave. in NYC here…it’s a TINY town, with deserted streets.

    Wouldn’t you know it? At the next IEP meeting my (2nd grade) teacher berated her for being “unsafe” and “not following the plan” (driving). So ignorant.

    • Gah. I’ve actually seen whole classes walking up and down the street in my neighborhood, so I don’t think they could accuse me of being unsafe, but really, I take care of my child every single day and his doctors seem to have faith in me to make decisions–why not the school?

  21. I’m with you on this one. I think the nurse is overstepping her boundaries.

  22. I don’t know. I can see how it feels unfair to do extra paperwork, but at the same time, if it’s just going to take a little time and a little annoyance and everything else stays the same, I think it’s worth just doing the paperwork to make it happen.

    Unfortunately, there are crazy people who will try to sue schools if something does go wrong, and there are so many laws regarding special education (as I’m sure you know) that I think the school likely wanted to have extra paperwork *just in case.*

    To me, it doesn’t sound like that big of a deal- but it also sounds like one of those situations that might not be about the end result (extra paperwork) so much as about how it was handled (the nurse going to the principal instead of calling you).

    She was absolutely right to check that the girl was on the list of approved pick-up people, but going beyond that without talking to you about the arrangement seems out of turn. Then again, though, I can think of a few situations as a teacher where something seemed like no big deal, but was just questionable enough that I wanted to cover my bases by telling the counselor or principal just in case (so that THEY can decide if it’s really no big deal). Maybe the school nurse- whether because of personality or past experience- is just a little paranoid and wanted to double-check. Hopefully, she was just meaning to look out for Charlie.

    If it were me, I’d have to assume that’s how it all went down. If I don’t decide to give people the benefit of the doubt, I get too cranky :)

    • I think that I’m a little bit trigger-happy since they haven’t been real nice to be about transportation issues in the past. I did just write the note–it’s the easier option–but I’m not in love with the idea that they make up special rules for my son.

  23. Kristen says:

    As a mother, I am right there with you. The public school’s ability to invade on parents rights has always annoyed me. Once in highschool, my father tried to sign me out of school for personal reasons. He was told I’d have to have permission from the vice-principal, which was very quickly granted, but really???
    But my children attend a private pre-school currently and I have substituted there . I know by state daycare regulations, we are not allowed to release any of our children to anyone under sixteen. This was called into question when a family lived down the street from the school and wanted to occasionally send their fourteen year old daughter to pick-up her younger brother. Reasonable by most people’s standards, but the regs wouldn’t allow it. Knowing that regulation, I think I would now question any young person who came to pick-up a child in any educational setting. Perhaps, just trying to give the nurse the benefit of the doubt, she was questioning a similar rule?

  24. Once the nurse checked to see if the helper was listed as someone who could pick Charlie up she should have backed off. You followed the correct procedure can’t imagine why they would want you to produce more paperwork. Seems like they were overstepping their authority.

  25. Perhaps. I would hope that it would have come up when I spoke to teachers or the school secretary. I was told that I had to make sure she was on the “official” release list. I think that’s the issue–I attempted to do the right thing and then they add on extra things because my son is disabled.

  26. Well, as a good friend on mine in this Special Needs world often says, School Nurses are proof that you CAN get pregnant from Anal Sex. I’m terribly, TERRIBLY sorry, mommies, for my potty mouth, but she had no business WHATSOEVER doing what she did and was 100% in the wrong. It’s actually unethical. And prejudicial to make the assumptions she did.

    Don’t question your parenting skills. You did everything you were supposed to do and then some. You can’t let some idiot make you question that.

  27. Of course, I just read Jenny’s comment, and I see her side too, and there is that. A CYA attitude in this overly-litigious society is also…somewhat prudent and understood.

    But I’d still be pissed. :)

    • As the relative of too many lawyers, I completely see where a person would feel the need to CTA. I just wonder if the same approach is taken to all children or if my child is being singled out because of his disability. That’s what makes me feel funny–I try to be vigilant in protecting Charlie and showing him how to stick up for himself and then i worry that I’m slipping on the little things.

  28. Lame! I’d be upset too.

    That said, I know you are trying to minimize your stress, and I hope this is one of those things you can let “roll off your back.” You could talk to the principal and/or nurse (or not), and certainly decide what to do when they request something beyond their standard procedures in the future, but I hope you don’t stress much more about this one. (Perhaps easier said than done, I know — I can stress about the littlest things for a long time…)

  29. …Not to say this is little! (Just that it may or may not be as big as some other potential battles.) :)

    • I’ve let it go–that’s what blogs are for! And yes, it is a small thing and writing the letter took very little time. I just sometimes worry that I’m letting people walk all over me.

  30. Sigh must they make everything so difficult!
    This aggravated me too… the nurse really went above and beyond. I mean really . I probably would have been like your husband and not want to write the note.
    However, I did wonder if your young aide may have done something that didn’t gel well with the nurse hence the investigation.

    That being said so happy that you found some one to help. The next few weeks and months simply waking up is going to be a hassle.

    • Aide is fantastic. Would be shocked if something happened. I’d also be really upset if something happened and she didn’t call me to tell me about it.

  31. Sounds to me like you handled the whole thing like a very responsible parent and I do think the school is over reacting. They have no right to question the private arrangements you have made with a non employee to pick up your child. Is the school aware that the girl is an employee’s daughter? If so, that might have caused them to look into the situation. I an an SLP in a public school and we sometimes see unusual relationships between aids and students’ families that don’t appear quite right.

    Don’t let it get to you. Sounds like a perfect plan and solution.

    • Alicia-I do have to wonder what a “not quite right” relationship looks like? I’m sure they’re aware that the girl’s mom is an aide–but I don’t see why that should keep her from getting the job.

      • I have been in Special Education for many years and our District has done a poor job of educating aides and their role with parents. We have had parents that use their child’s aide as a family member and take advantage of them. The lines between the school, the parent, and the assistant get muddled. Sometimes instructional assistants get confused as to who is their employee and become more loyal to the family than to the employer.

        Again, you have the right to hire anyone you love/trust to pick up your sweet son, but it might have looked cleaner to the school if the hired person was not related to an employee. I am not suggesting anything is wrong, Hope I haven’t confused you more.

        In my previous post I forgot to suggest that you should just let it go, if possible. You know that you are doing the right think for Charlie. You have a lot to deal with right now; don’t let the nosey district make your stress levels go up.

  32. This situation is just weird! You privately hired someone to walk your child home. This is an arrangement between you and she, not the school. The school nurse, while probably well meaning, overstepped her bounds. Would she have been okay with it if the person walking him home wasn’t paid? Is she implying that your son is so fragile no one other than MOM can walk him home? Please! I am angry about this for you, mostly because it does seem like the nurse is treating you like an idiot.

  33. I am not going to generalize about school nurses, but I will say that we have had similar over-the-top experiences with the nurse at Max’s school (which is a school for kids with special needs). She used to strike the fear of God into me that he was having absence seizures, so much so that we finally did do testing. Nothing.

    I wonder if they stir things up because, for one, they just have too much time on their hands?!

    I do understand, per what Jenny says, why the school would want additional paperwork. It’s the CYA way of doing things (Cover Your Ass). But, SO annoying. Like you needed more to do right now.