We talk to families a lot about the importance of advocating for children with allergies, what that looks like and why it is important. The same goes for adults with allergies.
It can be difficult and challenging, trust me I have been there and definitely don’t always put my best advocation foot forward when it comes to my own allergies. It is important to know that it is ok to advocate for yourself when you have allergies. It is ok to tell people about your allergies and ask for some sort of accomodation. Just as it is ok for them to decide how and if they can accomodate you.
We believe in advocating for yourself and those with allergies but there is definitey a trick to it. At least a way to go about it that will achieve better results. We see the the key steps to effective advocating as, being reasonable in your requests, communicating in a positive way and assisting with the required accommodations. If you are reasonable, fair and positive others will be more likely to want to help and accommodate or at least find it difficult to disagree with your position.
Making reasonable requests
What is reasonable changes in each situation. At a base level it is reasonable to ask for people to be allergy aware. That is to know your allergens, wash their hands after eating and know the signs and symptoms of allergic reactions so they could help you if the situation required it. It is also reasonable to ask if allergy free food can be prepared and if they can prepare it in an environment where cross contamination is minimised. That is not to say that it is possible to meet these requests in every situation, but is is ok to ask if it is possible. If you feel your require an allergen free environment, it is reasonable to ask if this is possible but you need to be aware that it is a very big request and isn’t always possible. In addition, it doesn’t guarantee your safety as you can never know if allergens have been around or if people have followed these strict guidelines you set out. Communicating about allergies, having your medication and making sure others know about your medication and action plans are generally considered more effective ways of keeping yourself safe.
We all like to be talked to nicely, especially when someone is making a request. Using positive language and communication makes it much more likely that others will accept your ideas and opinions. If you go in fighting, it is likely the other person will arch up quickly and fight back, rather than listening to your perspective. It can be hard when you are dealing with allergies, perhaps you have had negative experiences in the past, there can be a lot of emotion. You need to try and put these to the side when you are advocating for yourself. If you have had a few bad experiences and you know you get your back up quickly, try thinking of the positive experiences you have had before you go into the conversation, take a few deep breaths and focus on what you want to achieve and most of all plan your communications ahead of time. For each situation consider what would be reasonable accommodations and how you can be flexible to the situation so you are less likely to be taken of guard.
It is important to note that being positive doesn’t mean you need to be a push over. You can still be firm, assertive and hold your ground. You are simply taking a positive communication approach rather than a defensive, negative or even aggressive approach.
Offering to assist with accommodations
The more you can assist with accommodations or offer to assist the more accommodating people will be. In the end you are the one who is responsible for your safety and your condition. If you require others to wash up, bring some wipes. If it is a close friend offer to help them cook, this is fun and will teach them what it looks like to be allergy aware. Offer to bring allergy friendly dishes that others can share. There are many ways you can help to accommodate.
Going to a restaurant/eating out
Call ahead of time if you can, ask if they can accommodate your allergies, tell them what this means (e.g. there needs to be no dairy in the food, there needs to be no dairy around where it is prepared etc). If they say they can’t help you it is ok to push a little harder “I am wondering if there is one dish you could make safely? You would just need to wash the knife/chopping board before and use a clean pan?. I understand this isn’t a guarantee but it goes a long way to keeping allergens out of the dish”. Restaurants are often scared of making a guarantee and to be fair it isn’t really possible for anyone to guarantee that you will be safe, I often highlight that I am just asking if they can try their best to make a dish that is safe. Even if they agree to accommodate you need to make the risk assessment of whether the accommodations suit your specific needs, everyone manages their allergies differently.
If they are still very inflexible, you can tell they are flippant or they say they simply can’t accommodate (I have had restaurants tell me they can’t manage my nut allergy and I shouldn’t eat there!!), its ok to ask others if the location can be changed. Make suggestions that your know to be safe, offer to call and change the bookings. If this is not possible (work function, pre-organised event) and you really want to go, think about how you can manage. Is there one simple dish you could eat, veggies and rice for example? You could have a meal before you go and just have a snack there like some chips or a drink. At least you still get to socialise. You could even ask if you could bring your own food. The key is being flexible and asking.
Eating at someone’s house
Ask in advance what food they will be serving. Remind/tell of your allergies and how you manage them, “I have a nut allergy and I will have a severe reaction if I eat nuts. It is ok if others are eating nuts as long as they wash their hands after eating and no nuts get into my food and no nuts come into contact with my food while it is being prepared.” “If it isn’t possible to accommodate I am happy to bring something along that I can eat, if you could just please ask people to wash up quickly after eating”. That is a reasonable and fair request. If they say that there will be allergens around and there is nothing they can do about it and couldn’t possibly ask their guests to wash up, that is their choice, it is their house. I am not saying this makes it easy and can be very upsetting but remember that you communicated in a positive way and advocated for your needs and not everyone is/can be accommodating. Make the decision whether you will go based on whether you feel safe.
You may find some people are more than accommodating and will even work to accommodate even multiple, complex allergies. You need to work out if you feel they can understand cross contamination in the kitchen. If you aren’t comfortable it is ok to let them know it is easier if you bring your on food. You could even explain this “thanks for being so accommodating, I have just had a few tough experiences lately and I would prefer to bring my own food do you mind?”
Pets and allergies
This is a tough one!! People tend to get very defensive about pets, it is natural as they are a big part of people’s lives and they love them. Plus if someone hasn’t experienced allergies it can be hard to see how someone is allergic to an animal. Also accommodations are harder because they can’t simply get rid of their pet.
It is still ok to advocate for yourself. “Thanks for inviting me over, I know you have a lovely pet dog. I am highly allergic to dogs. If I was to come over the dog would need to be in another area and you would need to do a quick vacuum before I come. I know this is extra work, do you think it is possible?, I can bring a pet hair brush if it helps”
The alternative would just be to say no to an invitation. But then you haven’t given it a go, the person may say yes, they may be happy to accommodate and if you don’t tell them why you can’t come they will never know or understand and may even get frustrated that you never accept their invitations. This way they know why and can make a choice on whether or not they accommodate.
We had a friend growing up who would have severe asthma attacks with cats and we had a cat. She could still come over, we simply cleaned up and vacuumed before she came and put the cat outside. She would take preventative Ventolin and antihistamine. It wasn’t always great, sometimes she would react and we would follow her plan. But we still had good times together and are still good mates today!
This is just a brief overview of advocating for yourself. I hope it helps a little. It is simplistic because there are so many emotions and challenges that go into advocating. When people say no or refuse to accomodate it can be hard. One knock back, one bad experience, one big fat NO I don’t want to help you or you are being fussy etc. can knock you about in a big way. It is part of being human. Many, many studies show that humans need four positive experiences to get past one negative experience. It is crap when it happens but we have to remember that we cannot control others if they choose to say no that is their choice and we can’t know why they have decided to say no.
I honestly believe that if we advocate in a positive way, the YES!!! will outweigh the NO!! and by communicating clearly and positively you are doing your bit to raise awareness of allergies.
All the best in your allergy adventures!!]]>
Sunday 31st of March 2019
Woodville Pavilion and Reserve, North Perth
We are very excited about our first family fun day! Come along and join in a range of great activities, meet other families managing allergies, participate in a food smart allergy sessions with our special guest Jackie Nevard from My Food Allergy Friends, have a chat with the team from ASH, browse the allergy resource area and have a great morning out.
Register to go into the draw to win one of three prize packs, see below for details. Following the link below, click on 31st March and follow the prompts.
Run-down of the day
All of the talks and activities are optional you can explore whatever you like on the day.
10am – explore activities and meet other families
10.15am – welcome with ASH
10.30 – food allergy smart session with Jackie Nevard 3-7 year olds
11am – prize draw
11.30 – food allergy smart session with Jackie Nevard 7 and up
11.45 – Wrap up with ASH
Allergy Friendly Activities
There will be a big range of fun allergy friendly activities running throughout the morning.
Furry friend medic area
Playing is kid’s work, it’s how they learn. Kids can bring along their favourite cuddly toy and they can help them to learn about and manage their allergies and treat them at the furry friends’ medic area. Perhaps they need to manage their eczema with wet wraps, practice using an epipen with an epipen trainer, write up an action plan, use a spacer or just have a check-up.
Magic touch face painters will be there and for a gold coin donation kids can get a fun design on their face or arm. Lauren uses face paints especially designed for sensitive skin and we will have a print out of the ingredients on the day so you can check they are safe.
Come and see the ASH dad’s attempt giant bubbles on the main lawn. Have a go, see if you can make them any bigger!! Ingredients will be listed at this station.
There will be two tables filled with craft fun, allergy friendly of course. One for the littles 1-4 year olds and one for the bigger kids 5 plus. Draw an allergy mate and add it to our mural, colour in one of the allergy awareness posters or decorate an Easter egg and enter it in our competition to win a Sweet William chocolate pack at the end of the day.
Join in some sensory fun at the playdough station. Our playdough is made from corn and rice flours and care is taken to make it in an allergy safe environment. We will be asking families to wash children’s hands before and after play.
Register before the event and you go into the draw to win one of three prize packs donated by some amazing and generous allergy friendly businesses. The prize packs will include;
Prize pack 1
Prize pack 2
Prize pack 3
Come and have a look at the resource stand packed with useful information for families managing allergies.
Promoting allergy awareness The day will be allergy friendly and promote allergy awareness. We will have a designated areas to have a snack if you would like to bring one along and there will be a coffee van for your Sunday morning caffeine needs. These areas will have hand washing stations so that everyone can wash up after eating and keep others safe. Please ensure to only eat food and drinks in these designated area we want to make the event safe and fun for everyone.]]>
By now most of you managing allergies would have been in contact with the school and made a plan for the new year. If you haven’t, or allergies are recently diagnosed, it isn’t too late. Get in contact with the school and have a chat about your child’s allergies. Our top tip – go into the conversation with a positive attitude, it can help to know what you expect from the school in terms and allergy management and how you plan to support the school in delivering this.
So what can you do in the next week and a bit to prepare your child, your self and the school for your child’s arrival at school? We share our tips and thoughts below.
Medication – ensure their medication is ready for the school year. Epipen, antihistamine, asthma inhalers, whatever your child requires. Make sure is stored and labelled well, ideally with their photo and always with their Allergy Action Plan. Allergy Action Plans need to be signed by your child’s doctor so be sure to do this before school starts. Their are plans for anaphylaxis, allergies, eczema, asthma and FPIES. You can find them at the link below. Storage protocols will be specific to schools – make sure you are familiar with the schools medication storage and procedures. Again talk to the school about this if you have any concerns or special requests.
Prepare your child – one of our favourite things to talk about here at the hub is communicating with your child about their allergies. Most parents prepare their kids for the new school year, whether they are starting for the first or seventh time, use this opportunity to talk about allergies as well. Don’t worry, talking to your child about their allergies and how they can manage them at school, won’t frighten them or make them anxious as long as you approach it in a calm and positive way.
So how can you do this?
Remind them of their allergies and how you handle them as a family and how they will need to be handled at school. Discuss what it means to manage their own allergies in the school environment and let them know that their teacher is their allergy partner at school like you are at home. Remind them that they have own lunch box, not share food, ask the teacher before eating any food that is brought into the classroom, tell the teacher if they notice any allergens, wash their hands before they eat and tell a teacher if they are not felling well at any point. If they have asthma discuss their asthma plan and what to do if they feel unwell.
Read and play!
The best way to get these messages across is to read appropriate books and role play. Role playing school interactions with your child can be lots of fun and is a great learning tool. Set up a school or encourage them to set one up with friends. Play out what would happen if cupcakes were brought to school, or if a friend asked to swap lunches. Everyone has different approaches to allergy management so show your child how you, your family and the school will be approaching these situations. Always take into account the child’s age and capabilities. If they don’t quite get it the first time, just gently remind them and try again “Let’s try that again”. Get teddies and play out what would happen if they ate something at school and didn’t feel well. Play doctors and ensure they are comfortable all of their allergy medications and procedures. And read as many books as you can, kids love books and even more when the resonate with their life. Remember remain calm and positive and your child will start to build confidence about how they handle these situations.
My food allergy friends has some great back to school books. You can buy them online or in our offices.
Prepare yourself – back to school can be a busy and intense time for parents. Especially for those little ones going for the first time, and if it is the first time you have entrusted care of your child and their allergies to someone else. Give yourself time and space when they go back to school. Try and make the first week a calm one if you can where you don’t have too much on. It’s ok to feel a little anxious about your child going to school, that is normal for everyone and for those families managing allergies it is very understandable.
However, if you are very anxious and this anxiety is effecting the way you live or your quality of life, if you feel that you won’t be able to send your child on their first day or you can’t communicate to your child about school because it is to upsetting for you then please seek some assistance. We have a qualified psychologist here at the hub as well as family support officers who are here to lend an ear.
Talk to the teacher on the first morning – have a chat to the teacher on the first morning. Remind the teacher of your child’s allergies/allergic conditions and the processes you expect to be followed. This will help it to be at the top of their mind. If your child has an allergy/allergic condition book they would like to share perhaps ask the teacher if they can read this book to the class today (ideally this is organised ahead of time, teachers generally go back a day or two before term starts so you could send an email about it now). If you can go with two parents that is great it means one of you can have a chat with the teacher while the other settles in your child. If not just chat to the teacher with your child in tow. Keep it very positive, friendly and calm so your child sees that it is going to be fine.
To ban or not to ban – this can be controversial both in general and in the allergy community. That is whether or not allergens should be banned from the home, from the school, from planes. All schools and families have different policies and that is ok. We thought we would just make a couple of points. Firstly if your child’s allergen isn’t present in your home they are less use to seeing the allergen and may not deal with it on a daily basis. This makes allergy education and preparation key. Talk about all the different foods the allergen can be found in, that other kids may be eating and the steps they need to take to keep themselves safe (handwashing, not sharing food and so on). Also please note that a ban at the school does not mean the allergen won’t be present, your child still needs to know what to look for, not to share, handwashing and to speak to the teacher if they don’t feel well.
A note about arts and crafts supplies – depending on your child’s allergies arts and craft supplies can be a source of allergens, they can contain dairy, egg, wheat, soy and other allergens. e.g. some paints are egg based, playdough contains wheat. If you haven’t already spoken to the school about arts and crafts it is probably worth sending an email now. As I mentioned they will be back a couple of days before school starts. Mention your child’s allergy and potential arts and crafts products that could contain allergens. Again go into the conversation knowing how you would like this approached and how you can help.
Best of luck with the new school year! We hope it goes amazingly well and your little ones settle in and have a wonderful time at school!
Always remember we are here to help. If you want to chat to someone about managing allergies at school, email us to book in a chat with our family support officer. If you or your child are experiencing anxiety (problems sleeping, panic attacks, avoidance of situations or foods, excessive worry, irritability, racing thoughts) over the thought of the new school year please get in touch, we are here to help. If you aren’t in WA get in touch and we will help you find the right resources for you and your family.]]>
Christmas baking has changed a fair bit in our house now we are managing such varied allergies, but it is still possible and it can still be fun with a bit of preparation.
Baking with the kids can’t be as free for all especially with a wheat allergy. I have to plan the baking day carefully. We made the fruit mince first as everyone can eat this, followed by all the food for our little guy with allergies. Then he watched a little TV while we finished of the fruit mince pies and pudding that contain wheat. We managed to make cookies all together, he rolled and cut out his at one end and the girls at the other. We were careful and vigilant and it was safe and fun, although a little and with lots of handwashing, bench wiping and sweeping up
Put all the ingredients in a pan, on a medium-low heat bring to the boil, simmer for about 6-8 minutes. Mix through the cornflour and cook for another couple of minutes until thickened. If you are using potato starch turn off the heat then stir through and stir until thickened (do not put it back on the heat)
This healthy fruit mince is great to have on hand over Christmas. Serve it with coconut yoghurt of ice cream and some little biscuits for an easy dessert.
Grain free fruit mince pies
Blend the chickpeas, oil and date syrup (could use any type of sweet syrup) until smooth. Add the flours process until combined into a dough. Refrigerate for 1 hour. Roll out and cut into circles, place in prepared pie tins. Fill with fruit mince, cut out star shapes for the top. Bake at 180C for 10-15 mins until golden.
We used the pastry to make extra crackers/biscuits which have been very well received.
Very allergy free gingerbread men
I simply use this great donna hay recipe and replace a few ingredients.
I replace flour with quinoa flour and butter with light olive oil to make these dairy and wheat free. It works well. I am pretty sure you could make this substitution with any oil and flour that you like. Even as it is this is a very soft dough, I roll it out and place these in the freezer until a little harder, then it is easier to cut out shapes.
Eggless Royal Icing
Place aquafaba in the mixer and beat on high until foamy (2-3 minutes). Add the sugar and vanilla and beat until shiny and creamy, about 7 minutes.
This icing works so well and is delicious!!!
Other allergy friendly recipes
I make all of our Christmas recipes dairy free as it is just easier to manage and I don’t like cooking with butter as it is hard to manage in the kitchen with a child with a severe dairy allergy. I simply replace butter with nuttelex, it works a treat and everything turns out really well! When recipes have milk I might add water or orange juice to replace this. Both our pudding and fruit mince pies are simply our family recipes replaced with nuttelex. We still use egg so it is a bit easier, as I know replacing egg can be hard! I will start experimenting on some egg free recipes for next year.]]>
We were fortunate enough to meet with the WA reps for Mylan recently and we used the opportunity to quiz them on a few epipen facts. One of the topics of interest for us was Epipen storage finding out the facts vs the myths, what is optimal storage, do you need to keep them insulated? The answers were very interesting and not what you might expect. Here are their top tips for storing your epipens.
The most important part of epipen storage is accessibility. When you are in an emergency situation and someone is experiencing anaphylaxis you need to be able to access epipens quickly and easily. Store them in a consistent place in your house, everyone should be aware of where they are kept and be able to access them easily. When you are out and about have a consistent place that you store them. Ensure those around you know about your/your child’s allergies and where your epipens are stored. Not being able to access an epipen when it is required is a common reason for not administering them in a timely manner.
The epinephrine can degrade with UV light exposure. It is important that epipens are stored in a dark place, whether at home or when you are out and about. For example keeping them on the kitchen bench might seem accessible but are they might be in direct UV light. This is where a storage container or bag can be useful.
Epipens be kept at room temperature. However, constant insulation is not necessarily required. If you are having a trip to the beach on a hot day they should be ok without insulation, however, long term heat exposure is not recommended. For example being left in a hot car, kept in a glove box or in the searing sun all day long (remember UV exposure is an issue as well). The same goes with cold exposure, they should not be kept in the fridge or at cold temperatures for a long time.
Look in the window. If the solution is discoloured, a red/reddish brown colour, or if there are things floating in the solution then it is time to replace them.
Overall, keep your epipens in an easy to access place, away from UV light and ideally at room temperature. Insulated bags can be helpful as they keep out the light and provide some insulation but they are not necessary. In addition, not all insulated storage containers have been rigorously tested so do your research if you are very keen to have them insulated. If you are spending days at the beach in the height of summer or in the snow in winter it might be worth investing in something that has been scientifically shown to insulate your medication such as the Frio pack.
I keep my sons in a larger medical pack as it helps to store them alongside other medications such as antihistamine and Ventolin. They are always kept in his backpack which is always with him. At home there is a special draw for his backpack where it is always stored and everyone is aware of this storage place. My epipens are kept in a small cross body bag which is large enough to fit all my things plus two epipens. Being a cross body bag makes it easy to throw on and always have with me.
If you need more information give us a call or head over the Mylan website. Mylan have plenty of resources, we have many in our resource centre, and there are more online if you are looking for more information.
It is important to note that this is not a paid post.
Hands up if you love birthday parties! I know I love a good party!
What about now that you are managing allergies?
One of the first things that comes up when talking to individuals with allergies or families managing allergies are birthday parties. They use to be a source of fun, excitement and most likely too much sugar and preservatives….all the good things in life really! Now they are dreaded, more stress, worry and questions than they are worth. Whether it be severe food allergies, to eczema flair ups or even a party at a house full of cats where your child’s hayfever could run out of control, all allergic conditions can be difficult to manage when it comes to parties.
Attending parties and celebrating someone’s birthday is a wonderful experience that no child or adult should have to miss out on simply because of their allergies. So the question then becomes how you can best manage parties to ensure you and your child have fun and remain safe.
In this blog post we will go through a few of the main questions that may run through your head when you think of birthday parties and allergies and how you can address them. It is important to remember that every family manages their allergies differently and has to choose the risks they are willing and not willing to take when it comes to their child’s or their own allergies, these are just some helpful guidelines.
Some helpful tips
In this blog post we will cover off the first 5 questions and follow up with a second blog post for questions six through to eight.
Do you let them go at all?
YES! Who doesn’t want to go to a party?! Ideally your answer will be yes, if you can make the time and date and your child is keen to go. Although a fair bit of preparation is required to make sure the environment can be as safe as possible.
Do you inform the host about your child’s allergies?
YES! It is important to inform others of allergies for a number of reasons.
How do you inform them?
Party hosts will often ask about allergies. Either way it is important to give the host a call and let them know who would like to attend the party and their allergies. Also inform them of the severity of the allergies and how you plan to manage them. For example if you prefer to bring a party lunch box for your child let them know that your child would love to come and celebrate but will be bringing their own food to be on the safe side. That way the party host is fully aware of how you plan to manage the party and what they need to cater.
Do you expect others’ to accommodate the allergies?
This is where things get a little more difficult. My personal opinion is that some accommodation is a reasonable request. This is an opportunity to stand up for your child and show them that they deserve respect, empathy, compassion and to be included, as all children/people deserve.
It is the level of accommodation that is up for debate. Allergen free environments are quite tough to manage and difficult to demand. It may not be possible for another parent to make this commitment and there may be other children with different allergies making it even more complex.
It is reasonable to request an allergy aware environment. Inform the host that your child has allergies, describe what this means, ask the parent whether food with allergens will be served. If so ask if it is possible that children can sit down to eat and wash their hands after they eat. It may be different to the way they normally run a party but really it is quite a simple request and it can keep an allergy child safe. Bring a pack of wipes with you, so you can help to give everyone’s hands a wipe after food.
Anaphylaxis & Allergy Australia has resources about being allergy aware, see the link below. One idea is to send this to the host to demonstrate what you mean by being allergy aware.
We attended a party the other week that had lots of allergens present. Our little man was fine, we took his own food, the kids had a great time but I didn’t ask everyone to wash up after food. We knew the hosts really well but not the other families and I forgot to ask beforehand. Regardless this it would have been a simple request and I know they would have obliged. We don’t always get it right but we learn each time!
How can you effectively communicate about allergies?
Clear, calm and positive communication is key. Discussing allergies can be emotional. You may have had past experiences of people being less than accommodating or feel unsure about putting your needs forward.
Keep your voice calm, use a low tone and talk slowly and clearly and you will have more of a chance of getting your point across effectively. Also try and keep it as positive as possible. Plenty of research shows that humans need lots of positive interactions and communication. You may have heard in a work context that people need four pieces of positive feedback before they will listen about the one piece of negative feedback regarding their performance. Well this goes in most situations. Keep it positive, say how excited your child is to come to the party and they are looking forward to it, yes they have allergies and this is how you will manage it and this is how they the host can help.
If you are unsure about communicating your needs, then practice. It may sound over the top but practicing can help you to deliver a clear message. Practice with your partner, practice with your friends.
What if the host offers to accommodate but you would prefer to bring your own food?
Again keep it positive “thank you for offering, you don’t know how much that means and if you can keep dairy to a minimum it will help to keep him/her safe. However, his/her allergies are quite severe and it is safest for me to bring a party lunch box for him/her.” This is also a good opportunity to talk about cross contamination – every interaction is a chance to education people about allergies.
So in summary say YES to parties as often as you can, being included is so important to children. It can be hard and the planning and communication required is more than most families have to deal with, but it is worth it. Especially if it means your child is able to attend a party with their friends and just be a kid.
Read full post here: https://www.allergy.org.au/health-professionals/anaphylaxis-resources/ascia-action-plan-for-anaphylaxis]]>