Monday, January 24, 2011

Great school meeting today-what a relief!!

So-I have a confession to make.  When Alexa started at her new school, I did not schedule a meeting with the principal.  I asked them what they needed regarding paperwork, etc to keep my allergic girl safe.  I dealt directly with her teacher, the nurse and briefly with the Parent Coordinator, but I did not schedule an appointment with the Principal.  Why? Well, I didn't want to be labeled "the allergy parent" or considered a problem as a new parent to the school.  In hindsight-this was a mistake.  Lately, I've been reading a lot of allergy stories about reactions in adults and children.  These stories seem to keep popping up in front of me.  Yesterday, I thought to myself-"the universe is trying to tell me something-there's a reason I'm getting all these warnings.  I need to take action".  So when I dropped Alexa off at school, I stopped into the office.  I was not prepared.  I did not think through what I would say or practice a speech but I knew-I wanted my kindergartens' Epi Pens with her at all times.  I hope she will NEVER need them but hearing all these stories I've learned having Epinephrine nearby is CRITICAL.  I will admit, I was nervous to approach the Parent Coordinator, I wasn't sure how they would react.  If they would be annoyed.  If they would think I was asking too much, if they would think I was telling them how to do their jobs, if they would think I'm a nervous, controlling, allergy Mom.  But I knew I had to ask.  SO-I popped my head into the office door and quietly asked if I could have a moment of the Parent Coordinator's time.  She said "of course".  I took a deep breath and said "lately, I've been hearing about allergic reactions where Epi Pens have been the saving grace and a critical component to a good outcome.  My husband and I talked and we feel Alexa should have her Epi Pens with her in every class or she should wear them.  The time it would take to retreive them from her class room or nurse could be the difference between life and death.  For now, could the teachers pass them off as she transitions from class to class?  I will be ordering her a belt so she can wear them, but for now-I would like to use this procedure." Her response? "of course dear! Here, this is something you should talked to Dean about, come with me" (Dean is the Principal) She ushered me into his office.  He was very friendly.  I introduced myself and gave virtually the same speech.  He said, "well yes of course, where are her Epi Pens now?" She has a set in her home room and a set at the nurse.    After a brief discussion, he said "well really, I would like each of her teachers to have a set of Epi Pens in their room and have training as a refresher on how to use them.  This way, we don't have to worry that someone forgets to hand them off, AND we know everyone has been informed and trained."  WELL! That was not what I expected and it was actually a better idea since it will ensure they are all aware and trained! woo hoo! This lead to a discussion about allergies in the school and I mentioned to him that a 13 year old girl from Chicago had died at school just before Christmas.  They were aghast.  I explained that it was a school Christmas party and that because of a paperwork issue, the school did not administer Epinephrine and they could have saved her.  They were shocked and asked all the same questions I asked when I hear that knews. "Wait, what? I don't want to blame the victim or the parent but she was 13-did she have them with her? Was she wearing them? Why was she eating Chinese food? Why didn't they administer the Epinephrine?" BINGO!!! I was relieved to hear they know what questions to ask, they know what should be done, and they had a similar reaction to me!  This also brought up the question of "well what do you expect us to do if she has a reaction? Some parents want us to call them first before doing anything." So I told them,  1) give her the EPI Pen first, 2) call 911 3) call me.  I would rather have them give her the medication and be wrong then NOT give it to her and be wrong.  I can not tell you how happy I was to have this discussion.  When I picked Alexa up today I asked her teacher, "Did Dean talk to you today?" I was so happy to hear her say "yes he did.  Let me know when you get the Epi Pens and I'll make sure they get to her teachers.  We will also all have refresher training." AWESOME!!  Of course on the way home I was thinking "why the hell did I wait so long to talk to them?" idiot.  I'm just lucky that nothing happened to my daughter during the last 5 months!  So now I feel like the school is better informed, they know me, they don't think I'm crazy, and the Principal will make sure Alexa's teachers are trained and ready to care properly for her.  Lesson learned: make an appointment with the Principal when you start a new school.  HAVE the conversation.  If it goes badly, its the wrong school, or you need to advocate harder for your child and her needs.  So happy with this outcome!! I pray to God Alexa NEVER needs that damn Epi Pen but now I know that if a reaction happens at school, those caring for her are prepared. 

4 comments:

  1. What a great reminder! Thanks for sharing your experience, I'm glad it went so well. Not sure your insurance will cover the cost of each teacher having a set of epi pens (There should always be two, in case of a biphasic reaction.) My daughter has one in the nurse's office, one on her body, one with me, and one at home. We are always covered that way.

    Also, don't hesitate to advocate for your child. Every mom does it. You just keep your child alive by doing it, and there is never a reason to apologize for that! You are doing an awesome job.

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  2. Alexa carries a set in her backpack and it's her job to remember to always where her backpack, but at school, they don't let her wear it room to room so I wanted her to either wear them or have some one carry them. They ARE going to let her wear it at the afterschool program. Thanks so much for the pats on the back! Us Mommas (and allergy mommas) need it!!

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  3. Wow, it's sad that you have to go in so timid/guilty for making special requests. I don't have any kids, but I do have allergies... and I always feel odd making requests or even asking questions at restaurants. I also don't want to be "that guy", but then again... I don't want to be the guy causing a disturbance by "dropping trou" and jamming an epi pen into my leg.

    It's great to hear that the administration was so cooperative with you though. The training for EVERYONE and multiple sets of epi pens had to be a great relief!

    Perhaps a positive article to the local news would be in order? Some good allergy press would be an excellent thing!

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  4. I'm so glad you had a good experience! Being the "allergy mom" is really tough, but getting a response like that makes it so much easier.

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