disclosure to students

[nabean]

hi folks,

I am experiencing my second official relapse within the last year. Luckily we are on break right now but we start up again on monday. I finished a steroid treatment today. Hoping to be able to go to work on monday but I know that I won't be quite right, Both feet are numb, both hands are numb(typing is hard), ms hug in full force and I feel like I have about 50 pounds og weight strapped on my right leg.

I teach at a Primary to 9 school, general music and band. It is a school with alot of behaviour problems. My grade 9 students( the only group that I don't have bahaviour with) already know because they have been my students for a long time and have kind of watched my whole style and energy change and I felt they deserved to know what was happening.

Now that I know when I head to work next week it is going to be obvisious to all the older students that something is wrong I am wondering if I should be at least honest with them. I don't know really what to do. I obviously don't have any intention of telling all the students but Iam wondering if I should tell the students that are old enough to notice that something is off. I just don't want them making up their own stories and theories about what is wrong...you know how students imaginations can be...

thoughts?? I have also been in tough with the MS clinic and they don't see my latest flare up as any reason to not work, so I am going to try my best.

Just confused and wondering what other people have done in similar situations.

Nabean

[heliotrope]

You could always tell them: "I've been sick lately, and these are the problems I'm having." At least you'll limit their imagination.

[chalknpens]

When to tell

This is a question I've struggled with the past four years. I've told my colleagues, I've told my administrators. I haven't used the MS label with parents or students, and over the years, I've wondered why I am so leary to do that. I tell them I'm a Democrat. They know I'm a Christian and celebrate Christmas (but honor Kwanzaa, Hanukahah, Ramadan and whatever else my students practice.) So why have I held off on coming out of the MS corner?

When I was first diagnosed, I read everything i could get my hands on ... and there was a lot to read ... and like many of you, I began planning for the eventuality, worrying about the possibility of cognitive losses, bowel and bladder issues, a wheelchair in a second floor classroom ... I assumed the worst. I expected that anyone reading that information could assume the worst. I didn't want my internet-savvy students searching MS.

In four years, I have experienced continuing numbness in one hand, a complete remission in both feet, ongoing pain in my lower ribs and back, loss of balance and horrendous fatigue. None of this is visible to the students nor to their parents. Nor is my blurred and sometime double vision that comes and goes in hot weather.

In the past year I have been absent three times as often as in any year prior. This is my thirtieth, and now final, year. I am using a walker in the classrooms, and tell them that they've seen me lose my balance and I don't want to fall. I often turn the lights off at lunch and put my head down to catch a cat nap, though it is never enough, and when I can leave early I do. They likely attribute that to my quickly whitening hair.

I am glad I am over sixty now. I am glad it is acceptable to feel "tuckered out" without having to invent a reason or disclosing a label such as MS. I do still fear parental mistrust that could follow a disease of a teacher's brain.
We walk a fine line in education - read the papers, we all are seen as making too much money for too little work.

Next month, my principal is bringing in a permanent sub for my last semester of teaching. I will still be there, but there will be someone with me each day. A letter will be sent to parents, but MS will not be disclosed ... she has worded it carefully with me to allude to fatigue and a need for stable substitute coverage.

I am content with the letter. I am content to leave, two years earlier than I would like to have left, but before I fall flat on my face in the classroom. I will leave in good standing, both literally and figuratively. I will leave in peace.

I've probably had MS for two or three decades. I've had the diagnosis for only four DMD injection every night has shaken my self confidence and caused pain and distrust. I wish I never had the diagnostic testing. I was better off not knowing.

I am blessed with a husband that understands, with two grown children who understand, and with colleagues who understand. I've had over two thousand students pass through my classrooms in my career; too many to count, or to confide in.

Tell those you feel need to know. The others will speculate whether you tell them or not.

Be well.

[nabean]

Thanks for your comments folks. I decided to not go to work on monday, tuesday and wednesday because I was having a hard time coming off the steroids. No sleep for three days makes for a pretty bad crash. The good news is that about two days after my treatment the feeling came back to my feet and now it feels like about 20 pounds of extra weight on my leg instead of 50. I went back to work today and I was moving almost the same as I was before. No one asked any questions so I feel alot better mentally about the whole thing.

it is too bad that the numbness is still in both my hands though. I was trying to teach grade six clarinets how to go over the break on their instruments (most challenging part of learning the instrument at that age) and I could barely tell if I was actually covering the holes on my own instrument! I was making horrible sounds at first...until 19 years of playing the thing just took control and I just let my fingers do what was natural. So frustrating to all of sudden not be able to feel your instrument under your fingers hopefully the feeling will come back soon and it will be a non-issue.

I already can't practice the guitar skills that I am teaching my Junior High general music class. It is brutal to not be able to give physical examples when teaching...like a gym teacher that throw a ball or a math teacher that can't add!! haha!! The feelings will come back...I haven't lost strength or coordination...so I guess I just have to get used to the new sensation for now keep plugging away at it.

Thanks for the supportive comments folks. In the end I don't think anyone noticed anything out of the ordinary so that is good

[TundraGirl]

Perhaps I will fall in the "crazy" category, but oh well. I have been telling my students I have MS for quite a few years now. It has made student speculation about my stumbling/general klutziness a non-issue, which is great for me. Sharing with my students has also put me in contact with some of their parents who have MS as well, which has been good.

I am continually overwhelmed with how compassionate and understanding middle school students can be. When I've needed help, I've never had to ask more than once or twice. While I think that everyone has to make their own decision about disclosure, I am glad that I have told my students about my MS.

[JoeS]

I am relatively new to the education scene, but at what age do you all think is appropriate to tell them?

I was in a 7th grade class last year, and a few of the kids would laugh at my stumbling and ask if I was drunk. I would laugh and shrug it off, but I never told them, regardless of how embarrassed it made me.

I am in an elementary school now, and other than a few students asking why I walk weird, there have been no other comments.

Just a few observations, but I am curious to hear what more you all have to say on this matter.

[GGBEE]

Hi!
I'm not a teacher, but was reading the post. I have M.S. and wanted to just say, "Thank you", for all that you do as teachers. It can be challanging, but adding an illness such as this, can add a little more.
As for telling your students, it is totally up to you. I have four kids, ages 13, 11 1/2 and twins that are 10. They know mom is sick. Mom also puts in a lot of volunteer hours at their school. They go to a charter school, so it's pretty small, Pre-K to 7 and about 174 students.

My son's teacher is wonderful. One day I was just sitting there and she piped up and said, "This is (my sons name) mom, she is here to help us.
My kids have told their friends I have M.S. and they have explained to them what it is. You would be suprised at how often I go into (mostly my oldest son's class) and have kids offer to help me, or ask if I am okay. If I get up to get something, they will offer and bring it to me.

They have a lot of compassion. I feel lucky to have the kids I do and I also feel lucky to be part of such a wonderful school, where people in general are so supportive. All of my kids' classroom's are on the upper floor on day's that staff see that I am having trouble, they offer the elevator (you have to use a key).

It's your choice on how you do things, this is just my experience and I'm not a teacher. Just wanted to say thank you....you make such a difference in kids' lives.

**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[wkikta]

I am relatively new to the education scene, but at what age do you all think is appropriate to tell them?

I was in a 7th grade class last year, and a few of the kids would laugh at my stumbling and ask if I was drunk. I would laugh and shrug it off, but I never told them, regardless of how embarrassed it made me.

I am in an elementary school now, and other than a few students asking why I walk weird, there have been no other comments.

Just a few observations, but I am curious to hear what more you all have to say on this matter.

7th Grade would have been fine to tell the students. As TundraGirl says "It has made student speculation about my stumbling/general klutziness a non-issue", it is better they know the truth. You will be amazed how understanding they can be.

[mtngl]

Whatever feels right...

Hello All,

I faced this issue before I was diagnosed in 2005. Because I was actively teaching before my doctors figured out what was wrong, I had to contend with the strange looks and giggles of middle school students. However, at the end of the school year, I decided that my inability to speak, cope with the extreme fatigue, cognitive difficulties, etc. warranted a change. I was also trying to commute 2+ hours each way between Pennsylvania and New Jersey which was becoming dangerous (almost falling asleep at the wheel).

Anyway, I think that the decision to tell the kids or not depends on your situation. You're with them all day. You know their maturity or lack thereof. You also know whether your administrators support you or not. Finally, you probably know what kind of rapport you have with the parents. Trust your judgment about this.

However, I think that it also makes sense to read up on disclosing your illness to your employer (although right now the focus is on your students). The National MS Society has some good resources on their website.

Best wishes.

[chalknpens]

now on medical leave

Hello all,
It is official, I am retiring in June (two years earlier than I'd planned) and I am on an extended medical leave 'til the end of this year, with a permanent sub in my place. My principal and I talked about the on again off again, good day bad day unpredictability of MS, and my anxiety resulting in leaving sub plans each day and calling for the same sub suddenly each night or early morning that I knew I was not strong enough to go in. I have enough sick days stored to do this, and so I now can go in when I can, stay out when I need to, without worry ... she is always there, and it is a great opportunity for her, too - experience and a foot in the door for a newly certified teacher.

Kids haven't asked why, we haven't said, sent a letter to parents introducing my new "partner" referring generically to my increasing absences due to "a weakening condition."

Sometimes is is important to remember Luke's passage: Those who ask shall receive, those who seek shall find, those who knock shall have the door opened to them.

That I am in my last year of thirty years of service surely helped. That my pension is lessened by the thirty rather than thirty-two years is softened by the fact that, had I known younger, I might have left earlier, with even less.

I have MS and now MS does have me. No more pretense and false expectations of continued strength. And I am finding peace with this.

[ME610]

be honest

I did reveal to one student, that I dont actually teach this year about my MS.... she could be classified as a "difficult" student. I am a resource teacher and teach all around the building. This student was having lunch with our guidance counselor at the table where I was to teach next. I was invited to join the conversation as I was setting up my next group.

That day, as I gave myself my Copaxone injection, I bled... and made a small spot on my Khaki pants..... the GC said, oh no, you have chocolate on your pants (our secretary keeps a stock of chocolate in the office). I couldn't think of a lie fast enough and went with the truth (most teachers know about the MS).... after a bit of explaination, the student says, "Oh, that's why you walk so funny!"

So much for secrets!!! Kids notice everything!

[onlyasadgurl]

an even more difficult place to be in...

i didn't find out i had MS (if that's what they officially decide it is) until i finished my 2nd year of teaching. now i'm about to start my 3rd.

i teach 7th graders. they go to great pains to pick out every little thing i do wrong and it's hysterical that i bump into desks and can't pass out papers (can't separate them because my fingers don't work well enough) at a normal pace sometimes when at other times i'm fine.

top it off with the fact that i work in a rough school in a neighborhood where 96% of our population receive free or reduced lunch. my kids believe bullying is a survival skill and they don't show pity for weakness.

i'm only 30 years old and sometimes i cry as i drive home because it's just so damn hard and i'm so tired. but i'm not sick enough to take time off and i haven't worked long enough to have enough time off. oh, and i had a baby 9 months ago (surprise!) that ate up all my pto.

i love what i do. i'm needed whether they know it or not. but 12 year olds are ruthless and show no mercy on a good day. i dread the end of the summer. i wrestle with what to tell them each time i don't feel well.

[nabean]

I hear ya about the kids being mean. I know that you say you like that school but Maybe you should start applying to some calmer neighborhoods.

I teach music. this year I was on what we call a circuit. I was teaching music at three different schools. My main school, the one I have been at for the last eight years, is rough. In the past,I have had grade three kids tell me that they are going to rip my head off and $&~# down my neck,(just because I expect them to not run around the room while I am teaching). Over the last eight years things have clearly gotten better but I believe it is because they have made me hard as opposed to anything else.

My other two schools were out in the "burbs" and the children were much more focused and their idea of misbehaving was laughable compared to what I used to. I actually found myself changing back to my old self when teaching these students.

I know that teaching at a school where it feels like the kids really need you can be rewarding but I learned this year exactly how different I could feel at the end of the day when I didn't spend most of my day dealing with discipline problems.

In the end this year I went to the school board and asked for a new job for medical reasons and they were able to accomendate me.

I do feel for you. I can't tell you the number of times I have cried over my students the last eight years, and although I do feel guilty for leaving them I also know that I can't keep teaching there because my fatique levels will not allow for it (My teaching assignment was also ridiculous , I was teaching 21 different lessons a week).

Students need their teachers wherever you are teaching, but you need to teach in a place that you can stay healthy while you are teaching. I don't know how your school systems works but I have been very fortunante in my dealings with my school board. they have provided a voice amplification system (amazing the difference it makes), a small photocopiers (so I don't have to go from my end of the building to the other to do copies) and a big, high, chair(so I can sit while teaching and be higher up and visiable to the students).

And as I just mentioned, a new job in the fall. Their point of view is that if they don't try to do everything they can to keep me working they will just have another person off on disability, so they are very accomendating. I feel blessed to be working in a place where my employer takes my concerns seriously and is willing to do everything within reason to help me. but I am working in canada and have had a permenant contract with my school board for eight years, so my circumstances may be different from most. but some things are worth checking into.

Really consider checking into the voice amplification system. I was having a really rough time with some of my larger classes (34 kids in one room with african hand drums and guitars ) and could barely stand by the end of a lesson with these kids, but when I got the system all of our experiences changed.

I didn't have to yell to be heard (I always sound mad when I yell even if I am just raising my voice to be heard), which changed everything. Now that I never sound mad anymore alot of the defensive behaviour is gone and my relationship with the students is alot better.

They have noticed a big change to and were really enjoying themselves in the end. I also had no idea how much energy was being wasted on speaking loudly. The voice amplification system is what I would call a life changing system when it comes to a large/loud classroom. The one my school board got me cost about 1200 dollars, but they paid for it. I would say that in the end it saved them money because after I got the system I didn't feel as crappy and didn't take sick days anymore. I guess it all evened out in the end!

anyways, good luck with it all and I know that it is hard to do because you love your students even if theya re giving you a hard time....but think about yourself and be selfish when it comes to your health. At the end of the day you need to do what is best for you.

Take care

[penny70]

Was super glad to see this Post

Long post .. Read at leisure....

I too am an educator with MS. My diagnosis came after my degree (changed careers at age 30ish) and finding full time work. So I have ben a sub pretty much every day of the school year for the last this is my 7th year.

Subbing is great as if I need a day I can have it with out a hassel. The bad part, no set income level... no pay through summer or on snow days and holidays ... no insurance.

About 3-4 falls ago I did a long term sub placent in a HS LA room (first day of shool until Thanksgiving Break & then any time the teacher needed off after that). I told these kids as I needed their help in keeping a path around the table clear for me to get around the room. I also wanted to give them a heads up if I stumbled, staggered or fell. Told them if it happened ... make sure I was OK then they could giggle, laugh or hatever they needed to do then settle back in and return back to work. They were great about it. Most were Freshman that year, they are Srs now ... and they still ask how I'm doing etc.

I now occassionaly use a cane to walk (really tired days, ends of super long weeks) and they picked up on it and checked to make sue I wasn't doing worse and was still going to be around.

I have shared with as young as 6th graders (work primairly in a 6-12 bldg) so they would know why I just stumbled into the computer cart,etc. These are normally just in passing, unless they have ?s. Some do...most don't.

The powers to be at the school know as long with the majority of the teachers so there is no ? about why I have issues waking down the hall or (god forbid) the stairs. I don't hide it ... it is what it is I guess.

Penny