Am I overreacting?

[Anonymous]

So Please tell me if I’m overreacting. (So far the consensus is yes, if that helps…)

The girls take swimming lessons at the local community centre on Friday nights. Sarah is in a private lesson due to her seizure history. Two weeks ago was the first lesson. I got the girls dressed and while we were waiting at the entrance to the pool, I noticed a large sign at the front:

“ADMITTANCE POLICY CONCERNING PERSONS WITH SEIZURE DISORDERS

A study by the canadian lifesaving society has shown that persons with severe medical conditions (such as seizure disorders) are most at risk for injuries or drownings in water. Such persons should only enter the pool with someone else who is aware of their medical condition to supervise them. Thank you.”

Okay, well call me a moron, but it would seem intuitive that anyone with a condition where they can go unconcious would be at increased risk of injury in a pool (duh). My issue is the title of the sign and the implication- my child will one day be a teenager who may want to go swimming with friends or without someone with her who is “aware of her consition to supervise”. I wouldn’t care so much if it was titled “FOR PEOPLE WITH SERIOUS MEDICAL CONDITIONS”, but the fact that it’s directed specifically to people with epilepsy really ticked me off. Like people with epilepsy don’t have enough embarrassment and stigma to deal with already.

SO, I told them that I want them to remove the sign and place a warning to everyone with all medical conditions. They will not do it. My husband and family think I’m overreacting. Should I just leave it?

[Anonymous]

I don’t think you are overreacting. I think you are a mom who is sensitive to your children and think of them first at all times! Now whether or not I think you should continue to push the issue or just leave it I am not sure. Do you know of any other children/adults there that have seizure do or epilepsy? Could you try to get a “petition” together with others so show that you aren’t alone in your dislike of the wording? If you don’t think that is an option I might just leave it, but there is always power in numbers!

I totally get where you are coming from with this. As parents all we want is for our children to feel safe/protected and “normal” whatever that is. And when they are “singled” out in any fashion that “mama bear” comes out in all of us! Hang in there and good luck with your battle.

[Anonymous]

I feel your concern! But, that being said, there may be another reason for that specific warning. For example, do you think that some adults don’t think of a tendency to seizures as being a severe medical condition? Not that I don’t think they should, but Lori, let’s face it, there are a lot of people in the world that don’t you look at like “HUH?” I wonder if someone that had a tendency to seizures did not heed the warning and had trouble? I don’t want to make excuses for them, as I see what you are saying and it is not fair to specifically pinpoint one group, but there may have been something specific that happened that their lawyers made them post that sign?

Hang in there! There are going to be a lot of reasons we feel like we are being pinpointed, but not sure if that one is worth your energy! Not everyone in the world is going to be sensitive and a PC as they should be, so in some cases we just have to use the situation as a teaching moment to our children on how not everyone is as sensitive as they should be but that we need to remember how some things make us feel and make sure we don’t make others feel that way.

Hugs to you!!!!!

[Anonymous]

Thanks guys. I guess it’s probably me hating standing there staring at it every time, than about Sarah at this point. Lately I feel like everything is a battle and I’m standing ready with my fists up before I even hear the response. I suppose you’re both right, it’s not worth the energy, I’m sure… I’ll save my energy for the idiots at the school board.

[Anonymous]

You’re a GREAT mommy! Hang in there and know your girls are so blessed to have you!

[Anonymous]

I think I would want a more generalized sign also. It does seem to single it out

[Anonymous]

I would think that it would be a benefit to the pool that they change the sign to be more general to “medical condition that would cause you to lose consciousness” in this sue happy world. Maybe there was an incident that happened that caused them to place the sign?

I can only imagine the feelings it brings up for you and of course thinking of Sarah’s feelings in the years to come.

[Anonymous]

Thanks guys. Not sure what I’ll do. I’m trying to ignore it and pick my battles, so we’ll see. But when I think of the future, it seems so much harder. It’s much easier to protect them when they’re small and their world revolves around you.

SARAH, how is Isaac? I haven’t seen you around in so long!!!

s&h’s mum2009-10-16 09:53:55

[Anonymous]

Isaac is doing ok. We are 2 weeks away from his first neurology appt and then we will start testing for mitochondrial disorders. He continues to be delayed, has low muscle tone and now has no reflexes. He does have his NG tube still and his GI dr has said he has no problem placing a G tube for Isaac. The plan is to coordinate placing the G tube with taking the muscle biopsy to test for mito. disorders. We finally saw a developmental pediatrician that put the pieces together to see something was really wrong.

[Anonymous]

I’m so sorry to hear Sarah. I was hoping that things would get on track with the feeding and other therapies. Its good to hear that you have some people on your side who are looking to find out what’s going on. I’m sure it will all help Isaac. What makes them think it’s something larger than just reflux/feeding issues?… meaning more than just delays due to poor nutrition and eating issues?

[Anonymous]

He just seems to regress at times even though most of his nutrition is from the tube (my guess would be 95%). He is old enough and has enough speech to be able to tell us why he won’t eat and just says that nothing hurts and he is just not hungry. Feeding therapy has done nothing for him at all and his therapists don’t know what to do with him. All of that along with the low muscle tone, no reflexes and ketone levels that have been way high in the past. Even his teachers at school say that something seems to be really medically wrong with him and he is in the special needs class. Also he may have had a seizure recently. His Ped said if it happens again we will run tests. I heard him making a very odd noise on the monitor and ran to his room. He was shaking really hard and I grabbed his arm but it continued to shake. It was so scary. We are hoping it was just a very vivid dream

Oh and my cousin’s child has the same exact problems. I am not in close contact with my family but we saw my cousin at a funeral. She proceeded to tell me about her child and it was so crazy! The child is delayed, has low muscle tone and feeding issues. We had been seeing the same specialists for the same things and didn’t even know it. Both of their delays seem to focus around motor issues too.

They also consider my husband’s older brother’s diagnosis of mild CP to be something that could have been misdiagnosed. His symptoms were similar to Isaac’s. Something I have noticed is that his ankles turn in completely when he walks..just like Isaac’s. That I do find to be interesting

[Anonymous]

Sorry to hyjack and chime in, but Sarah, this definitely sounds genetic! Do you have a good geneticist? What part of the country are you in? We have seen one at the cleveland clinic, yale and now we are at one at UCONN for Carter. All know each other so they can put their heads together.

There is a forum if you do a search for SWAN, with some AMAZING moms with amazing information..

Sorry if you already have gone down all of these roads, but I just thought I would put this info out there. Hang in there!!!!

[Anonymous]

Ann Marie- Thanks! We have just started the journey in the last few months. We have not seen a geneticist. We are in southern ohio.

[Anonymous]

cleveland clinic – dr marvin natowicz…….THE BEST neuro-geneticist! we had an 11 month wait to see him, but worth it! we put the appt on the calendar, and decided if we didn’t need it at that point we could cancel. he took me VERY seriously and worked hard for an answer. we didn’t get an answer, but he works with our geneticist here and he also is willing to do a LOT over the phone and order tests so you are not running back and forth to the office on a weekly basis. I highly recommend him. Not sure if that is far from Southern Ohio, but we flew out just to see this guy. I had a 3pm appt, and he cleared his entire schedule and we didn’t leave to go back to our hotel room until after 7:30 that night. EXTREMELY thorough, measured the eyes distance, the fingers, etc, etc, etc……

Anyway, if you want to chat more about some of this, I am more than happy to, if you want to pm me, I am willing to give you my number. This has been a pretty difficult road and we are going on three and a half years with no diagnosis. Very tough, and can be very frustrating…..but some great support out there!

Hang in there!

Ann Marie

[hellbennt]

just getting to this now:
Lori: I feel for you about the sign!
but I also do think that you should save your fight for
the school system…I don’t know what it’s like in Canada, but from working in the school system in the US…ack! it’s a battle…

Sarah: please keep us posted! I’m sorry you’re going through so much!
I find the genetic componant to be fascinating- please keep us posted.

Ann Marie, can I (or you can, lol) post your dr recommendations? I think I’ll start a new post and link to it from the ped GI thread, since this is not a ped GI, lol…

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