My daughter is a beautiful, bright and extremely energetic little girl who in fact is just like any other six and a half year old. She loves to dance, wear pretty clothes, muck around with her friends and has a passion for drawing. The one big difference is that she cannot eat normal foods and does not cope well with being exposed to chemicals or the affection of a cat. The reason being is she has multiple food allergies, which puts her at risk of anaphylaxis, a life threatening condition. She has to have antihistamine and two Auto Injectors with her at all times.
It is strange to think that my daughter is in her second year at Primary school and the many hours of anxiety and worry about how safe school would be for her seem to have dissipated. Don’t get me wrong I still have anxieties and worries, but not to the same extent.
Starting school for any child is a huge milestone for the child and the whole family; a lot of community anticipation surrounds the child. How many times did I hear “are you starting school this year, how exciting!” for us as parents of a child with severe food allergies it was a time which was fraught with many fears, as this major milestone meant we were having to let other people take responsibility for her in a way we had never done before.
As most parents I am very proud of my daughter, she is smart, very mature for her age and was more than ready to embrace what school life had to offer. As her mother I knew that we had to let her take this new big step in life and it was my job to ensure that all the risks associated with her participating in school life were assessed, evaluated, articulated, documented and most importantly managed. I was stepping into a new role “advocate”, which fortunately I knew much about because of my work, but it felt like a whole new ball game when I was advocating for my own child!
There is much written about food allergies and the management of students at risk of anaphylaxis and everything that it involves, but there is little written about the emotional issues involved in identifying and transitioning your child with food allergies into the school community or real practical examples. I fortunately will never need to go through this process again, although I know that my constant involvement with the school about my daughter’s safety will be on-going and that the next huge milestone in our lives will be when we need to transition her into high school. Managing kids with food allergies is becoming more common and therefore the awareness, stigma and management will become easier in time.
But for us it has been an interesting one thus far and if by writing our story we can ease the stress and anxieties I feel we will have given back some in some way some of the huge amount of good will and support we have been provided through this amazing and sometimes difficult journey. Before sharing our story, I must thank those important friends and school staff who have touched our lives in immeasurable ways, without them my daughter would not be leading a happy, safe and successful school life.
One of the many challenges for me as a parent has been in how I describe her medical condition to others. My question has always been how much do I share with others and what level of seriousness do I place on her allergies, as life threatening sounds so FULL ON. It makes people uncomfortable and each time I use those words the reality can sometimes be FULL ON to me, even though we live with it each day. This was an important issue to me when initiating conversations with school when wanting to explore what school would be appropriate for her. It was also important to me that she is seen as a ‘normal” little girl who has needs like any other but has additional needs which need to be catered for. In other words she was not defined by her allergies. This is a hard balance, especially when you want to convey the seriousness of allergies. Being mindful of our language when describing allergies and the issues surrounding them has been incredibly important to us.
I cannot tell you how many people have jumped into my conversation with a comment like, O my sister in-laws little boy has allergies he is covered with eczema or my husband has terrible hay-fever! The balance between over exaggerating the effects of food allergies, but not under playing them was a fine balance and one I played around with for sometime before I arrived at a description that was factual and probably most importantly not emotional. Peanut allergies are fairly common place in most pre-school and schools now and dependent on the State you live in, there are a number of Dept Education policies and procedures which underpin the management of students at risk of anaphylaxis.
What is less known from our experiences is the management of children with multiple allergies and in my daughter’s case all the main allergies: nuts, diary, sesame, wheat, eggs and potatoes. (on starting school she also had fish and soy) In addition to this she has asthma and is very food intolerant. All these conditions impact upon each other so her whole condition has to be managed holistically.
So when contacting schools I decided to be up front and outline her condition and test the response. It became very evident early on how open Principles were to even engaging in a discussion. I know each parent’s style of communication and priorities varies, but for us this was the approach we used and for me, it quickly enabled us to identify the schools that were not in a position to be open and engaging about my daughter and those that were happy to at least initiate a discussion. I must say that I was actively fobbed off by one of my local schools and subsequently didn’t even bother to go and visit which was a shame, as I knew they had several students who had multiple food allergies.
Another assured me my daughter would be safe, but if she did come into contact with any food the auto-injector could be used as their insurance. For me this was not what I wanted to hear and although true, I wanted assurances that the school would do everything in their power to ensure she did not come into contact with food she was allergic to.
I am sure many parents can convey similar stories, but what has been one of my driving forces, has been my “gut” instinct, what has felt right for our individual situation and us. I am very respectful that each family responds to allergies in different ways, dependent on their life experience, medical support and guidance and priorities.
For us we felt that a small school would suit her personality and health issues, we therefore engaged in discussion with a small school which we landed up enrolling her into.
I maintained an open dialogue with the Principal who I felt able to express my fears and anxieties with and believe me I had many at the start. It was important that I did not feel too neurotic and for any parent reading this who has a child with life threatening allergies, you may relate to the fact that you do feel neurotic a lot of the time! He let me talk and most importantly he allowed me to feel “heard” which was probably one of the most important factors. I had no intention of leaving my child in any school if I did not feel that they understood the potential risks they were responsible for. It was a difficult time and I self doubted myself on many occasions. One of the totally weird things about food allergies is that although it is a very serious condition it is almost completely invisible. When we are having a good run and my daughter is looking well and not having any allergy reactions, I can almost question whether it is true. We are victims of our own success; we manage her allergies so well that to the outside world she is like any other child, which is how it should be. So being extremely clear about the type of school we wanted her to attend academically and from a safety perspective was very much our starting point. Also having the opportunity to talk openly about her medical condition with the Principal were deciding factors in choosing the right school. This was our starting point and I believe that this has provided us with an important platform from which to initiate a partnership with the school at the beginning. The initial stages are a bit like courting, you need to spend time getting to know each other and building up a relationship before you can delve into the more serious nature of the relationship. Sharing detailed medical information about her medical condition, identifying the potential risk areas and jointly coming up with strategies to reduce the risk.
I have this inherent belief that people who are in the teaching profession are compassionate and caring individuals. By the very nature of who my daughter is means she gets people on her side, I know that and I know that once people know who she is they will take responsibility for ensuring her safety.
As the saying goes it takes a whole community to raise a single child. I know I cannot single handily keep her safe so I have to find people who will join us in this role. Our job has to be to support and educate those involved in her life, so they are equipped to assist in keeping her safe. This I believe is what we do with the school, we have informal and formal ways of doing this. But what is the most important aspect is building positive partnership with school personnel and having total belief that their true intention is good and even when mistakes happen and they will, there is an underlying nature of good will.
When our child started school I realized that we were entering into an entirely new community. With this comes new relationships which take time to build up, it is a like a marriage, it takes time and patience to sustain a good marriage and whilst you have your ups and downs, the mutual benefits exceed the obstacles. This helped me to be conscious about holding back a bit in my communication and requests. I needed to spend time getting to know them, but they also needed to get to know my daughter and me.
It has been important to believe that the majority of teaching personnel are caring individuals, by the very nature of the profession they are in. They have evidenced this over and over again, identifying potential risks that had not been previously identified. As each month passes their knowledge base of her individual needs expands and their buy-in to keeping her safe grows. Fortunately she has one of those personalities, which attracts people, she is full of energy for learning and is extremely engaged in the school process, with her teachers and peers, and this makes life easier!
Don’t get me wrong we have had issues to deal with each term and some of them have been fairly significant, but we have followed a formula, which we are building upon and which ensures that we have the confidence to work with the school and the ability to constantly review what strategies are in place.
I’ve listed our formula and broken it down into two key areas, firstly preparing for school and secondly maintenance.
Preparing for school
- Talk to someone about your concerns/fears and ensure they are based in reality, be specific. e.g. if you are concerned about your child’s safety at school, break it down what are you specifically concerned about. It helps if the person has a child with allergies in the school system
- Do your homework, before initiating a discussion with a Principal regarding your child and their allergies. It is always good to know what you can expect as a starting point. There is an amazing amount of resources about to broaden your thinking about risks and ensuring your child is kept safe at school as well as DEEWR resources dependent on the state you live in. Each state and territory has it’s own anaphylaxis guidelines you can access these through the anaphylaxis Australia website: www.allergyfacts.org.au
- Language – If you haven’t done already learn to describe your child’s medical condition in a way which sits comfortably with you and which is accurate and informing, as you can find yourself in some fairly formal meetings discussing your child’s medical condition.
- Allergist – Talk to your allergist about any concerns you have about your child participating in school and clarify any areas of concern e.g. allergen skin contact, for us this was a big one as my daughter has had an anaphylaxis reaction from skin contact from diary.
- Documentation – Have clear documentation about your child’s medical condition that builds up a picture for the school. This can be difficult and can take time, as you may need to get your paediatric allergist to outline your child’s allergies and the areas of high risk, so gather this information in advance.
- Education – Up the anti with educating your child, we had already done a lot of work around this, but she needed to become more aware of risks such as drinking out of bubblers, washing hands, identifying to the teacher when she felt like she was having a reaction. Explore ways in which your child can acquire the confidence that you are working with the school to ensure it is a safe place for them to go.
Maintenance
- Celebrate Key Milestones such as end of the first term, acknowledging the huge transition, hard work and your child incredible ability to cope with such a big change of environment and new risks associated with it.
- Once you have identified the suitable school as for a formal meeting to go through potential risks. This was an extremely helpful process to the school and us. A Risk Management Plan was developed by the Principal and my daughters Teacher and was discussed at our first formal meeting. This is now reviewed each year with her new teacher.
- Keeping records - Confirm important communication via email, as it provides a wonderful record of events as well as formalises discussions taken place.
- Getting Involved – Being involved in the school is a wonderful way of engaging with teachers without it being allergy driven. I try to put in what we get out, as I want to acknowledge the great work the school do around keeping kids like her safe.
We look back over the past twenty four months and feel extremely proud of my daughter and her incredible ability to cope with such a big transition. I never thought I would see a time when she would come up to me and say things like “mum, I don’t feel safe when such and such happens” or when the teacher tells me that she requested Zrytec because she was coming up with welts. One of the most important aspects for us as a family is that the school community has accepted her and she fits in like any other child, long may it continue!
