More questions than answers

Why does it keep happening?

It isn’t that hard…

Why do I need to keep having the same conversation?

They just don’t get it!

Do any of these thoughts sound familiar, when dealing with an issue, which involves your child, and their allergy management issues?

I’ve been racking my brains to try and work out the best way of resolving conflicts around the allergy management of my child with people who are involved with her safety.

I try real hard to come from a belief that “most” people are well intentioned and try real hard to ensure she is kept safe. But I find myself very quickly in a defensive position responding in a way, which does not match this belief.

All normal you may think when you are ensuring the safety of your child, but for the sake of my daughter and my sanity I need to dig deeper, I need to question my reactions and responses.

It does not take long before the association with “fear” raises its head loud and clear and then I have to do some more delving. Is it authentic fear or is it unreal fear, that is involved?

We all live in a world that is built on fear and if you add a life threatening condition like anaphylaxis and a child in the mix I think it is realistic to have both forms of fear. But does this response provide my daughter with the best modelling and the best outcome, probably not.

So I’ve been delving deeper, questioning a few of my preconceived ideas and wondering how much real thought work I have given these areas of our life:-

• What do we really mean by keeping her safe, are we really clear about this as parents? 

• What are our minimal standards for keeping her safe, I mean what are “musts” and what are our general aims. (Measurable and specific)

• Auditing my inner fear voice and establishing which are authentic and which are unreal fear which is a projection of what could happen. 

• How do we want my daughter to respond when assessing a potential risk, and do we have guidance for her around what is the most useful way of managing her fear…. 

I think that I have raised more questions than answers, but I know that if I am going to attract the people in our lives that are going to keep my daughter safe I need to keep delving to find the right answers……

10 Things Children with Food Allergies Want You To Know

This is a great resource for anyone supporting, caring or parenting a child with food allergies.

http://www.slideboom.com/presentations/132950/10things-children-with-food-allergies-want-to-you-know

Newsletter Article Written For Allergy Week!

When my daughter was only nine months old the Royal Prince Alfred (RPA) Allergy Clinic advised us that she had food allergies. This basically meant if she came into skin contact or ate any of the foods she is allergic to, it could potentially trigger an anaphylactic reaction, which is a life threatening condition.

Much has changed during these six years; we have learnt to adapt our lifestyle to ensure that we keep her safe. Like many other parents of children with food allergies we work hard to ensure she leads a normal life.

New research into food allergy in Australia has alarmingly revealed that 1 in every 10 children is now food allergic. If you are not related to someone with food allergies or know of someone who has them, then it won’t be long before you do!

Living with allergies affects families and their communities in different ways dependent on the severity, the age of the child, cultural background and most importantly the information available by the medical profession.

Whilst she has grown up we have had many scares and thankfully have only had to use her Epipen (adrenaline auto-injector) on one occasion.

She has grown up with a high level of limitations placed on her around, behaviour, food choices, social interactions and freedom. She has to live with the constant “uncertainty” that should she touch or eat something she is allergic to, it could trigger an anaphylactic reaction.

For us as parents much of our time is spent educating family and friends, sourcing safe foods, checking labels, preparing food for outings and cooking the food she can eat.

Starting primary school was a huge milestone, for us as a whole family. With less supervision and a higher level of exposure to the foods she is allergic to, it places increased responsibility on her.

She does this conscientiously, whilst we as parents have to step back and let her take the lead. None of this would be possible without the continuos support and dedication of the school staff and friends.

She is a normal little six year old with the same interests as any other little girl her age. She has successfully managed to integrate her medical condition within her life, so that it creates few barriers. The barriers or potential additional risks she does encounter tend to be when others are not educated about food allergies and their potential impact.

We have learnt much on this journey and whilst food allergies become more common and people become more aware of the issues allergies create, our lives and that of other children become easier.

Share The Love - be like a dandelion

We as parents of kids with food allergies can be fraught with stress and anxiety about what could potentially happen to our kids. Or we can actively take another stance.....

I believe our children are individual souls with their own blue print. They will draw to them lessons and life experiences no matter how much we protect them. They will be safe, because they attract love and positive attention from those that are around them.

Others will look out for them, keep them safe and ensure they don't slip up. If they do there are plenty of people to catch them fall, help them through and assist them in learning the lessons that need to be learnt.

If we try to live our life with an open heart, we provide our children with a great role model. I believe love attracts love. During our food allergy journey we have met some amazing open souls who provide us strength when we need support and love when we need guidance.

It is important to believe our children will grow up to be strong and healthy individuals who are free from fear and anxiety about what may happen!

My Perspective Of Dads

As a primary carer for my kids I have to deal with the day-to-day management of their allergies and medical needs. This involves multiple trips to the doctors, changes in medication, adjustment to dietary requirements and an on-going role liasing with the school and preschool.

Not to mention the sourcing of specific products and jumping through various hoops to ensure that the allowed limited ingredients converts into an appetising meal for my kids. This is no easy task I can tell you, my children have the ability to smell four hundred yards away if I have sneaked some new ingredients or altered the recipe in any way!

I digress; the purpose of this posting is to raise the issue about including dads in the allergy management of our kids.

This allergy journey covers hard terrain and at times it can create cracks in what is a sound relationship. Having kids is hard enough for the strongest and most courageous, but having two kids with allergies can really test you as individuals, as partners, as parents and as a couple.

I think Dads can often be the silent partners and it is hard for them to get their needs met in terms of support and encouragement when the going gets tough.

I know for me, my husband’s job has got bigger and my paid employment has ceased just to keep up with the many demands placed on us. Whilst my social networks have grown and developed to specifically meet the many challenges of having children with allergies, my husbands have decreased.

The financial divisions and day-to-day practical responsibilities used to be fairly evenly shared, now they have completed altered. He is the sole breadwinner and I am the primary carer with no professional career insight.

Here are a few of my thoughts about Dads of kids with food allergies, they are not meant to encompass all dads, but they are meant as food for thought: -

1) Dads can often experience stress with home, work balance. The financial demands on families raising kids with allergies are unseen and can be very demanding

2) The main source of support for many dads is their partner. I know that I can sometimes be consumed with allergy management issues, which leave little space for my husband to gain any support from me.

3) Social isolation is common amongst parents of kids with allergies, even more so for Dad’s when they are out working all day.  It is far easier for mothers to connect because of being in the right place at the right time; dads lack many of these opportunities.

4)Due to work commitments they are often unable to attend the many medical appointments, which means they never get any of the allergy information first hand.

5) Loss and resentment can be experienced; as Dad’s are unable to do the spontaneous normal things other families are able to do, like go out for a family meal.

6)Being unable to build relationships with the school personnel and only engage with them when there is an issue. The school environment is not conducive to Dad’s.

7)Dad’s can sometimes see the bigger picture more easily because they aren’t immersed in the day to day management, this can be a great strength and much needed at times.

The list is endless and I have only covered a few areas and in very simple terms, but I think it is important that Dad’s have a voice and their needs are seen as different and just as important as the mums.

Balancing Act

What are allergy health issues and what are normal childhood ailments? This is a question I constantly ask myself and it can be a real balancing act.

We have just spent the last two days in a medical whirlwind, trying to establish whether my daughters mouth breathing is being caused my her allergies or by a structural issue in her nasal passage. Caution needs to be taken every step of the way, as normal ailments which all kids experience can easily be overlooked, whilst we deal with the many confronting aspects of our children's allergy responses.

Reflecting on what is needed:-

1) Have an allergist you trust and who has a long term investment in your child and who is not worried about spending time with you to discuss various issues. (without is costing you per minute) We have two, plus an amazingly well informed dietician.

2) Keep reading over your allergy information, it is easy to assume you know it all about your child and you can easily overlook very simple but crucial pieces of information.

3) Keep a medical diary, recording illnesses, ailments, weather conditions, treatments. This is a great way of collating information which informs the medical profession and also your allergy management approach.

4) Review the medical information, as children grow their condition changes, at least annual follow up with the allergist with updates from the medical diary are always useful. Also check with medical specialists that the way your children are taking their medication is still effective. e.g. the size of spacers change as they grow from toddler to adolescent.

5) I have this great friend who has been on our allergy journey from the start she knows the whole picture and has held my hand through some of the toughest times. It is wonderful having a friend who you can rant and rave to about the issues you need to deal with and they get it, without you needing to spell everything out.

6) Try and keep a balanced view, all parents have to deal with medical issues with their children, we just have a few more.

7) Create space and time with your child to discuss why you have to go and see specialists, the purpose of blood tests, and acknowledge that it may seem unfair, whilst keeping a realistic stance that it is part of "life". There are no one off blood tests, allergy tests etc for our kids it is something that they have to learn to get used to, which is hard but a reality.

8) Make sure you give yourself space and time to process allergy appointments. A lot of information is normally given and normally within a medical setting. This can take its toll and it is worth ensuring that you acknowledge this for your and your child. Do something nice together to celebrate that the appointment is behind you. Again check in with your child their perspective of the appointment to ensure they are not left with any inaccurate information.

8) Last but not least, maintain a sense of humour! It is hard at times but in most situations there really is something to laugh at!

I am sure i've left some information out, but this is all for now.......

Education and Changing Attitudes

This week seems to be throwing up some interesting issues, which have taken up some head and emotional space.

Our local indoor playground (0-6 yrs) has decided that it is OK to serve peanut butter to children as long as no children with allergies are present. They consider this OK as they will endeavour to supervise the children and get them to use wet wipes afterwards. Trying hard to see the positives in this decision leads me to consider that at least they are  prepared to consider food allergy management even if it is a little misguided! Here is an opportunity to provide some accurate information about the "risks" associated with such actions..... So I shall be putting pen to paper and seeing what kind of  response I get, before taking a slightly more proactive approach. Watch this space........

The second challenge of the week involves a parent who seems to be challenged by the issues of cross contamination. Not wanting to bore you with the details, I should just say that some people have absolutely no idea about how to keep kids with allergies safe. What is more concerning is that they go out of their way to actively dismiss advice or information.

These incidences highlight the importance of picking your battles and being clear about the long term goal. There is no point ranting and raving about the injustices of situations or getting upset about insensitiveness of individuals.

I'm trying really hard to see what these incidences provide me in terms of 'opportunities'?

How can I ensure that my local indoor playground space is safe for kids with allergies and in particular my kids.

Secondly and most importantly how can I more actively communicate these issues within the community to ensure my daughters safety. The incident with the parent provides me with an excellent opportunity to engage in a further discussion about cross contamination issues within the school environment. If managed correctly it will improve my daughters safety at school and also hopefully enable her to purchase items form the canteen in the future.

Each challenge provides new opportunities, the trick is to let go of the steam/anger/frustration and overall emotion and try really hard to grasp a positive spin on the situation. Seeing it as an opportunity to propel me to the next challenge, which undoubtably will only be around the corner:)

None of this would be possible without the friendship and amazing support of friends who have been there before and who have experienced the many challenges we as parents of kids with allergies face daily. So my since gratitude and appreciation goes out to my friends who provide me with the much needed space and shoulder to cry on when needed. Without you it would be hard to keep such a positive spin - Thank you:)xx