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 Post subject: Parent stress
PostPosted: Wed Jan 24, 2007 9:19 pm 
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Joined: Thu Aug 24, 2006 1:42 am
Posts: 222
Location: Victoria, British Columbia
Hi Everyone --

So, how do you deal with the stress of having a child with a life-threatening allergy? Right now I am in a major rut -- my worry either consumes me OR I try to deny the whole thing by busying myself with something else. How does one get to a middle ground, where it is just something you accept yet you are prepared for an emegency BUT you don't freak out about it all the time?

I know a lot of my stress is based on my work with the school, school board and health authority. Although our group of parents is making progress, it is going to take a long time to get to where it affects our kids in the classrooms. I feel as if we are doing a lot of talking but what I want is action. I am so exhausted trying to defend the fact that I want my boy to be safe in his classroom, for I KNOW he has the right to be there, and a right to be safe. I am tired of the notion that they don't believe us, and I worry that something is going to have to happen before they do.

Thanks for any insight,
Caroline

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son anaphylactic to peanuts


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 Post subject:
PostPosted: Thu Jan 25, 2007 7:39 am 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6475
Location: Ottawa
How so we deal with stress?
I try to control everything (luckily I have a very controlling personality?)
I have been obsessing for the past 6 months about a trip this summer.
We carry a backpack filled with wet wipes/medication/food etc. I have an emergency bag ready at all times with stuff for a hospital visit (flannel blankie, crayons, books, can opener, canned food, small toys, bottled water, chapstick hair bands and a note pad and pen to track what I've missed for next time).
We keep caches of safe food at friends and families homes.
We offer to bring the cake to birthday parties (my husband has taken decorating courses) so that we can ensure the safety of it.
We don't deviate from the known. I have a friend who's daughter is the same age as ours and she is so adventurous in food and so outgoing in social situations...I wish that my daughter could be able to be adventurous as well but she can't. It isn't within our comfort level and it isn't within hers.
I worry that we're raising a neurotic child but she is naturally a cautious child (how can I be sure when she developed her allergies before 12 months of age?)
Caroline-through all that we go through, at least I have Sabrina's Law to help me. I can't imagine the emotional energy that you have to expend with the school system in order to ensure your child stays safe. It is a shame.
I wish you luck.

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Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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 Post subject:
PostPosted: Thu Jan 25, 2007 10:33 am 
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Joined: Thu Mar 03, 2005 9:38 pm
Posts: 1643
Location: Toronto
Caroline, I'm not sure how long ago your son was diagnosed -- and that might make a difference.

If it's been a while, were you previously in that middle ground? Right now you are dealing with a specific stressful part of food allergies. Fighting with the school can be all encompassing. (I've been through it, not for allergies, but for learning disabilities.) Even when you are not at meetings, or writing letters, it is still at the front of your mind. No matter what you are doing, it's there.

So, if you were previously in that middle ground, I think once you've managed to climb this current mountain, you will get back there.

If dealing with allergies is relatively new for you, it might take a bit of time after getting things settled at the school to really get some peace of mind. The fact that you are being so pro-active makes me think you will get there though. :)

******

Last week (or the week before?) I got a phone call from the school telling me I had to come and get him right away. I didn't even freak out -- just asked why. When I hung up the phone I realized that in 5 years, that's a first. I got a call from school and my heart did not stop. :) (btw, he had fallen in mud and was soaked, so it was not an emergency, but yes, I needed to go get him)

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self: allergy to sesame seeds and peanuts
3 sons each with at least one of the following allergies: peniciilin, sulfa-based antibiotic, latex, insect bites/stings


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 Post subject:
PostPosted: Thu Jan 25, 2007 11:41 am 
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Joined: Tue Sep 12, 2006 8:25 pm
Posts: 233
Location: Winnipeg
Hi Caroline,

My heart really goes out to you in your struggles with your school and school board. No wonder you're stressed out!!

I find that our stress levels rise and fall throughout the year...falling when we have a routine that I'm comfortable with, when their teachers and other caregivers seem to "get it", when we can be busy enjoying safe food-free activities together and see our children just having fun, learning and growing like "regular" kids...and rising sharply when we encounter new situations (new school, new teacher, new extra curricular activity), or get taken out of our routine (holidays, travelling), or have to deal with people who have inconsiderate or even hostile attitudes towards people with allergies (recently overheard from some other moms at my sons' school, "I understand the peanut allergy, but I just don't f***ing get this egg thing!").
When our stress levels are high, it usually indicates to me that there is something that I need to be concerned about. For example last year we had both of our sons enrolled in an afternoon soccer camp. I went in and gave the head coach my whole spiel (epipens, anaphylaxis, asthma etc.) beforehand, but I felt that he was slightly inattentive and had that "Ya, ya, ya I know all about this stuff already" attitude. I was absolutely miserable leaving my sons at the camp, and worried about them the whole time that they were there, but I thought maybe I was being too overprotective, and that I would embarrass them by hanging around when none of the other parents were. It turned out that I was perfectly right not to trust that coach. One of my sons had an asthma attack and was left to deal with it alone, across the field from the rest of the group, with no supervision!!!! :shock: :evil: What if that had of been an anaphylactic reaction? Or even a more severe asthma attack? My instincts were right. I was worried for good reason.
So when I am stressed out the first thing I do is try to assess the situation for dangers, and figure out what I can do to minimize them (in the case of the soccer camp I should have stayed there with my sons...in the case of an unsafe school situation , doing exactly what you are Caroline, advocating for your child and trying to work to make the school system safer). Then comes the really hard part for me, which is accepting the risks that I can't eliminate. I can ask the school to make my sons' classrooms free of their allergens, but I can't control what other parents decide to send in with their children or how well the children wash their hands after eating. I can give instructors information about my sons' allergies and tell them what to do in the case of an emergency, but I can't control how quickly or well they actually would respond if one of my sons was having a reaction. It's this letting go part that I find really difficult, and it's where I would have the tendency to become too overprotective and worry too much.
I also don't want to transfer my stress to my sons. It's so unfair that kids with severe allergies end up being so conscious of danger and mortality. That's a heavy burden for a little kid. I want to let my sons (wherever possible) just to dig in and enjoy their childhoods, without being defined by or overburdened with their allergies.
So I try to create the safest environment I can, to accept the risks that I can't eliminate, to be well prepared in case the worst happens, and then to allow them and myself to get on with the REALLY important stuff like building snow forts, planning a pirate themed 7th birthday party, and reaching that last level on our Harry Potter playstation game :) .

_________________
1 son allergic to eggs, peanuts, green peas, chick peas, lentils and tomatoes
(avoiding tree nuts and most other legumes too)
1 son allergic to eggs, and has outgrown peanuts
Both with many environmental allergies, asthma and eczema


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 Post subject:
PostPosted: Thu Jan 25, 2007 4:37 pm 
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Joined: Sat Apr 16, 2005 12:09 am
Posts: 1054
twinmom wrote:
It's this letting go part that I find really difficult...
So I try to create the safest environment I can, to accept the risks that I can't eliminate, to be well prepared in case the worst happens, and then to allow them and myself to get on with the REALLY important stuff...

This is my philosophy too twinmom -- it's a hard one to come to but I think there is a great sense of comfort and peace in allowing yourself to trust that it will all be OK. All we can do is our best to prepare others and our children and then it's all in the "letting go" of all of those things we cannot control. There is no easy way to do it, you just do it (or else you end up compromising your own health...)


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 Post subject:
PostPosted: Sun Mar 11, 2007 12:48 pm 
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Joined: Thu Aug 24, 2006 1:42 am
Posts: 222
Location: Victoria, British Columbia
I read an interesting article in my paper today:
http://www.canada.com/victoriatimescolonist/news/monitor/story.html?id=b95d3d4d-99d0-478f-ae93-5828776f37ad titled, "How much risk do you live with" by Chad Skelton. I am not sure where to put this article as it doesn't quite fit under 'allergies in the news' but it does touch on stress as it relates to risk. And I do think that people who live with allergies suffer from high stress just because of the risk of a reaction . . . Anyway, in the article, it mentions

Quote:
The most difficult type of risks for people to assess properly, experts say, are what are known as "low-probability, high-magnitude-risks."

Simply put, they are those things that are both very, very rare and very, very awful -- like child abductions and serial killings.

"[These] risks are very hard to think about and very hard to talk about," Sandman said. "People will either focus on the horrible and forget the unlikely or they'll focus on the unlikely and forget the horrible."

So while some people dismiss such risks as so rare as to be trivial, others fret about them intensely and go to great lengths to avoid them


It is not that I want to compare living with life-threatening allergies to abductions and murder, but I do think the chances of an allergic reaction when proper safety measures are in place is low. However, finding a balance of just how safe we can be is difficult to determine. For those of us who live with life-threatening allergies, this "how far we will go" is touched on the article about "Health Related Quality of Life" (see http://www.allergicliving.com/forum/viewtopic.php?t=1844 ) It mentions that a study
Quote:
results suggest that it is rather the risk of food reactions and measures to avoid them that are associated with lower HRQL than the clinical reactivity induced by food intake.

I do find that people without allergies often act as our worries are trivial, while parents of kids who worry about a life-threatening exposure 'fret' a lot in order to prevent such an exposure. Having this health issue often guides much of what we do -- from schooling to vacations to social situations.

As far as this relates to parenting, this risk article goes on to state that schools ought to have funds to support the physical structure of the building as well as have enough staff and equipment available in order to serve our children. I think it is at this place -- provide more support -- that I have the greatest chance of change in my local school system. They have been so reluctant to place any food restrictions/ 'bans' in place because, perhaps, with proper safety practices in place there is a statistical unlikelihood of an exposure at school, and even less of a chance that the exposure will be fatal. As a parent, there is no such thing as too low a risk or being too safe, but at least now I believe I am beginning to understand where the administrators are coming from. This in itself gives me power to keep fighting for change. . . and how I can point out where there can be improved safety precautions for our kids with life-threatening allergies so we can keep the risk at a minimum.

Caroline
(feeling thoughtful today but is struggling to organize her thoughts!)

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son anaphylactic to peanuts


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