School and Some References

Posted on: Thu, 04/08/1999 - 11:53am
barb's picture
Joined: 03/11/1999 - 09:00

Hi All,
Our daughter is now in 3rd grade. I have a couple of suggestions for those who are starting out. We don't have all the answers, but we do have file drawers FULL of materials. Some are better than others.
So here's what references are most useful to us. Along with some tips thrown in. Remember, this is a partial list. But hope it is helpful.

1. DO YOUR HOMEWORK. Since you will be the person educating the schools,you might as well know as much about anaphylaxis as you can. DO NOT ASSUME that the schools know how to handle it.

2. Since you are going to be doing all this "homework", you might as well get a FILE CABINET for all your materials. We started with a folder and now have drawers of materials.

3. DO NOT ASSUME YOUR ALLERGIST will give you everything you need to educate the school. Consider they are often busy and suffer from information overload too.

4. Learn and become familar with the American Academy of Allergy, Asthma, and Immunology (AAAAI)and the American College of Allergy, Asthma, and Immunology (ACAAAI). Both are professional organizations for allergists. Historically, the Academy has had a more academic focus; while, the College is more clinically focused. Both have web pages and lots of information. Explore the site fully, not just patient information sections.

4. The AAAAI has two POSITION STATEMENTS that are concise and very helpful in dealing with schools. The Position Statements represent the official concensus of the professional organization and are very POWERFUL! They are ANAPHYLAXIS IN SCHOOLS AND OTHER CHILD CARE SETTINGS and USE OF EPINEPHRINE IN THE TREATMENT OF ANAPHYLAXIS.
You can obtain a copy of these from the AAAAI. We have found that all the key personnel in school need a copy of these.

5. Talk with the principal and special education person manager about your childs special needs and the Positions papers. Tell them that you will contact the asst. superintendent/superintendent(in our area asst. superintendent is the person who actually runs day to day management and is the key person) to discuss the special risks and to make them aware of the Position statements. We have found that by getting the Top Level Operational person, you will be more likely get cooperation year after year. Otherwise it is just an issue in your child's building. The top level Operational person(asst superintendent, here) is very concerned about RISK MANAGEMENT in the school setting. And so are WE! So with the Position Statement, you help them do their job. WIN-WIN!!! And for those that who are reluctant to call the TOP, you might as well get started. Because, it is probably where you will end up if you start at the bottom. And you can save yourself the aggravation.
Remember, the TOP has the bigger picture. By SHARING INFORMATION WITH THE TOP, you will build some goodwill that you will probably need later.

6. Couple other good references are:
Food Allergy Network's Videos, Just One Bite and Alexander the Elephant. FAN also has a school manual $75.
The Canadian School Board Assoc. has a wonderful concise manual: Anaphylaxis: A manual for school boards $10.

7. Hugh Sampson,et al wrote an excellent article (that is scary,too). It is Fatal and Near-Fatal Anaphylactic Reactions to Foods in children and adolescents. It was in the New Engl. Journal of Med. Aug. 6, 1992. This is considered a landmark study and is freq. quoted by allergists. It will give the school the VERY scientific material that says you just cannot ignore this issue, esp in the school setting.

8. You also need Multiple copies of the EMERGENCY PLAN, available from FAN or AAAAI, for teachers, cafeteria,and special classes and subs. You will need pictures of your child to go with this. We put the copies in plastic document protectors, so that they last the school yr.

9. Also need EPI PEN trainers, to demonstrate How-to. We have saved expired Epipens and let the teacher/cafeteria aide practice on an orange. After, they see the needle, they are more than delighted to focus on PREVENTION. And that's what we want.

9. Now focus on RISK REDUCTION AND PREVENTION OF ANAPHYLXIS. Develop a 504 (special education) plan, using the above resources. The Position Statements are very useful in guiding your 504 plan development. We have a peanut-free (never free, just reduced)classroom, an aide at lunch time, and accompaniment for all field trips(parent or aide, and a plan on how to manage harrassment(which will occur). If you are reluctant to have your child label as haveing special needs, remember, that accommodations are not saying the child is defective!! What it means is that the child has some special issues, that must be addressed so that she/he can get an education that is mandated by law. And our kids do. Also, I believe that we must identify our children as having unique needs so that they will not feel later that they have no support in school. And it's better to have a 504 than experiencing anaphylaxis!!

10. Talk to key persons at school about how they can be ready before the FIRST DAY OF SCHOOL. And how you can help. It is unacceptable for a child with a life threatening medical condition to start school without advance training and preparation.

11. Give yourself TIME to do all the preparation. And don't procrastinate. Because, although it is anxiety provoking to think about sending your child to school with peanut anaphylaxis, by approaching the issues you will get thru it.

12. Go to the library and read about the struggles of other minority groups. Minorities who were pioneers, pushing for education and equality. Because, that is what we are doing. It will inspire you if you feel alone and that this is not fair. You can draw on the strength of others throughout history who have had to PUSH for what was right.

12. Consider that you will probably know enough about this topic by the time your child grows up to write a doctoral dissertation on the matter. [img][/img] You will be the expert!

We sure have a lot more to learn. But this site is a wonderful place to learn and share!

Oh, one more excellent reference for you as you teach and train your child is a book called: HOW TO INFLUENCE CHILDREN: A HANDBOOK OF PRACTICAL CHILD GUIDANCE SKILLS by Charles Schaefer. The book has wonderful examples on how to coach a child and role play with them IN ADVANCE, so that they can handle a stressful situation with more confidence. It also has lots of other useful guidance strategies.

And like I said, this is only a partial list of some things that helped us. Might as well go get the File Cabinet!

Posted on: Thu, 04/08/1999 - 1:30pm
anonymous's picture
Joined: 05/28/2009 - 16:42

Great information Barb!
You can just click on the following sites to get to the position statements:
The AAAAI's position statement for Back to School with food allergies is [url=""][/url]
The AAAAI's position statement for The use of epinephrine in the treatment of anaphylaxis is [url=""][/url]
[This message has been edited by Mary (edited April 08, 1999).]

Posted on: Thu, 04/08/1999 - 8:45pm
Coco's picture
Joined: 03/14/1999 - 09:00

Wonderful job Barb! We have a fellow in Sr. K. and have followed all of these steps. Are you in Canada or U.S. or elsewhere? One thing that is available in Canada to parents (who are unsure or nervous especially) is an excellent program offered by the Anaphylaxis Network of Canada. This is a one (long) day "Speaker Training" program. Each person attending leaves with a fabulous overhead presentation that it would be difficult to make a mistake presenting. It provides all information needed by the school pertaining to anaphylaxis. It also provides much information on how to address different groups appropriately and how to get your main point across. All who I have spoken to that have taken it have felt very powerful when doing their presentations. (It is also required that you take another previously trained speaker with you for the first 3 presentations you do, just in case you need any help, and to supply helpful feedback.) Do you also do presentations to classes? One of our local public schools has just finished "Anaphylaxis Awareness Week". I think that this is a huge step in the right direction. Barb, you didn't mention...did you meet with much resistance at the school? At other levels of school board? Thanks for taking the time to share this information with others, this is a very frightening time for many. Thanks for the links Mary!
[This message has been edited by Coco (edited April 09, 1999).]

Posted on: Sat, 04/10/1999 - 1:09am
barb's picture
Joined: 03/11/1999 - 09:00

Hi all,
We are in the USA. Canada has a lot to offer us here in the US! The Canadian Allergists first published a position paper in 1994 on Ananphylaxis in schools and other child care settings, which the US Allergists then modified and adopted, 4 years later. So, GO CANADA!
Do you have the address or contact for the Anaphylaxis Network you mentioned?
As for resistance at school, I am not sure I would call it that. Parents have been very nice. The school system has come a long way, and I pushed and fought to get that to occur. What I think is that the school personnel did not initially understand the severity. Then when they did, they didn't know what to do. And quite honestly, several years ago, we didn't either. So it was a work of art in progress, writing the script as we went along.
There are various levels of competence in a school, just as in any place you have work. What I think, several years later, is that you have to make an ASSESSMENT OF THE COMPETENCE OF THE SCHOOL PERSONNEL. You must get around the average school personnel and build support with the top notch folks. The brightest school personnel will "get it" and go the extra mile to help. You still will have to be the DRIVING FORCE for the management of anaphlyaxis in the schools. That is why doing your homework and having GREAT REFERENCES will help you. I was very uncomfortable initially being the driving force in the school, but practice makes perfect!! Also, even as a driving force, you must be subtle and respectful of the school and personnel. They, when properly educated, will be filling the role you have been doing, protecting your child from anaphylaxis. So you want and need their cooperation and trust.
We have built a relationship with the principal, and have requested a teacher that has the following characteristics: Bright, pays attention to DETAILS, CALM in the face of emergency, WILLING and able to inject if necessary, ORGANIZED, and if poss. some experience with students who have has serious medical conditions. The schools have seen the wisdom of our requests and we have had teachers who are very cooperative. We still have had to face hurdles, but like I said: THIS IS A WORK OF ART IN PROGRESS.
Thanks for the links, Mary!

Posted on: Sat, 04/17/1999 - 5:12am
Noreen's picture
Joined: 01/24/1999 - 09:00

Thanks so much for this information. My son enters kindergarten next year and we have our first appointment with the school administration in two weeks to talk about a 504 plan for him. I asked the school psychologist if there were any other peanut-allergic kids who have come before us and she said no. So it looks like he'll be first. Lucky me. [img][/img] I'm predicting this will be my least favorite administrative task: dealing with schools. If only I lived in the same school district as you, LauraP, Mary, Coco, and others who have done such a superb job in negotiating with these schools to keep your child safe. Thanks to you and all the peanut-allergic adults on this board who pave a clearer path for our younger ones.
[This message has been edited by Noreen (edited April 17, 1999).]

Posted on: Sat, 04/17/1999 - 10:55pm
terry's picture
Joined: 01/16/1999 - 09:00

Noreen: Good luck on your upcoming meeting with the school administrators. I hope you are going with your husband/significant other. I have been told by several women that they felt the school system took their concerns, whatever they may be, more seriously if it was percieved to be serious enough for the spouse to take the day off work etc. I have also found that the school system speaks their own non-translatable language, and they seem to prefer that. However, we have found that it helps to ask good questions, describe in specific detail what you want, but allow the school system to make the decisions. That is, you may be able to describe the type of teacher you are looking for regarding experience with the medically fragile child, attention to detail, may have had a diabetic student in class etc, without demanding that you want teacher X. We also asked the school system what would happen if the teacher was absent & what sort of mechanism was in place so the substitute would know of our daughters special needs ? We tried to anticipate problems in advance, much easier said than done. Your plan for your child will always be a work in progress as it will be refined & adjusted on a yearly basis, if not more often.

Posted on: Fri, 05/21/1999 - 1:13pm
amraff1's picture
Joined: 05/17/1999 - 09:00

To all concerned
I jusst recently found that I had this peanut allergy. I am a second grade teacher. I have snack in my classroom, help children hold pencils---after lunch and feel as though I am now suffocating in my room. Coming from the other side of the problem I would make sure any parent telling me of a servere allergy in their child was made well aware to all substitues. It would be posted in my room--even before I found out about this allergy. Please make sure your teacher is aware of your concerns.

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