Allergy Wizard would like you to know that it is Jeans for Genes week. You can find out more by clicking on this link.
Six weeks ago, a retired racing greyhound trotted into our family’s life. She has basically slotted in as if she has always been here, although sofa space is at a bit more of a premium these days. It’s amazing considering how many new things she has had to learn about: stairs, TVs, washing machines, children, etc. However, the outside world is still a little concerning to her.
Things that are terrifying, according to our greyhound:
- plastic bags blowing in the wind
- all spaniels
It’s also been a steep learning curve for us. We have had to work out exactly how high she can reach and what things need to be kept out of her way. It’s like when a baby starts to crawl or walk and you suddenly have to toddler proof your house and move everything up. Except a greyhound is a 30+kg former athlete with a full set of teeth so it’s a bit more of a challenge. Things that might have been food and needed to be checked for tastiness, according to our greyhound:
- several clothes pegs
- a pizza box
- an empty Amazon box
- a spoon
- a scouring pad
- many garden shrubs
- the straps on two muzzles
- a new pair of sunglasses
- a Fidel Castro cap
The straps of the muzzles were particularly embarrassing. People conspicuously avoid you, if you are walking along with a muzzled dog. This is doubled if the dog is wearing a muzzle repaired with cable ties (while the replacement is on order) so it appears that she has tried to bite her way out of her muzzle. She basically looked like a canine Ronnie Kray.
I was keeping her muzzle on because she didn’t really believe that any dog smaller than a West Highland terrier is a dog. A racing greyhound will only meet other greyhounds so other breeds of dog are a new experience. Each new specimen of small dog was sniffed closely until she was convinced that they are actually a fellow dog. Unfortunately, the smaller dogs sometimes objected, or occasionally their owners did, and scared her, which could be nasty for all parties. Now, she has had enough time to learn that dogs come in many sizes, we can trust her to go muzzle free.
Allergy Wizard summed up how we feel about our new greyhound, when he said “Things are funner around here now we have a dog.”
Firstly, you might be wondering what a care dog is. A care dog is a dog that has therapeutic benefits just by being itself! This contrasts with a therapy dog that has been trained to carry out specific, therapeutic tasks. For example, a dog, that has been trained to lie on its’ owner to provide deep pressure when the owner is distressed, is a therapy dog. A lap dog, that loves being cuddled and lives in a care home to provide relaxation for dementia patients, is a care dog. A lot of dogs are probably care dogs, without anyone realising it. Good doggos!
We had a list of desirable characteristics for our care dog:
- low shedding. No dog is truly hypoallergenic as they all shed their fur, but there are differences in how much and the type of fur.
- quiet. Several members of our household have auditory hypersensitivity, which means that sound is amplified for them. Everyday sounds, such as a dog barking, would be physically painful.
- calm. Several members of our household have Meares-Irlen Syndrome; a small, fast dog running around the house would cause disorientation, leading to accidents and injuries.
- older. We didn’t think that we were ready for a puppy as our first dog, and, frankly, everyone has enough trouble sleeping without a puppy waking us too!
The care “tasks” we wanted the care dog to fulfil were:
- being a good traveller. One member of our family finds travelling very difficult and has a tolerance of about 30 minutes – 1 hour for being in the car. We wondered whether having the distraction of a dog nearby (obviously kept safely, not just loose in the car!) might help him tolerate this better.
- relaxation. Having a dog to stroke, hug and tickle might be relaxing.
- needing exercise, but not too much exercise. One member of our family has a mild physical disability. They really need to exercise daily, but, because this is painful, resist this. Walking a dog provides a reason to exercise, but it would need to be short distances.
- playing. Playing games to extend the range of activities the boys take part in.
You are probably looking at our lists and thinking we are crazy! We want something that is calm and doesn’t require much exercise, and we choose a greyhound – the second fastest accelerating land mammal (cheetahs are the fastest)! Well, yes, but hear me out. Greyhounds can run very fast, but they are sprinters so they only do it in very short bursts. Most greyhounds have a fit of the zoomies for about 5 minutes a day, where they run around zestfully, often throwing their toys around as they go. For 20 hours of the day, they are sleeping, and, for the remaining time, they are moving around slowly and purposefully. A greyhound needs 2-3 20-minute walks a day. This was the level of activity that we wanted.
Greyhounds have very low maintenance coats. They need bathing about once every 2-3 months or when your nose tells you it’s time. They need a brush once a week, and they never need their coat cutting. They are low shedders; this is relative to other dogs, of course, and they shed quite a lot when they first come home. Greyhounds have silky, soft coats, that are just asking for stroking, and velvety tummies just waiting for tummy rubs.
Greyhounds are also generally quiet. They hardly bark as they tend to whine or squeak, if they are going to make any noise at all. The most noise I have heard from our greyhound has been the “greyhound scream of death” when she caught her ear on a rose bush and cried in panic, and she once barked in her sleep, while having a particularly dramatic dream.
Retired racing greyhounds have all the benefits of adopting an older dog, but less of the drawbacks. A racing greyhound has been kennel trained so they know not to mess until they are allowed out for exercise. Our greyhound easily transferred this over to being in a house. She has only had one accident and that was partly our fault for not understanding greyhound for “the back door has blown shut and I’m busting!” She was mortified by this so we didn’t even have to tell her off. There is none of the stress of house training a puppy.
Normally, an adopted dog is a mystery. You have no idea of what has happened to them or where they have come from. A retired racer comes with a registration showing their parents and grandparents. They also come with vaccination and medical histories. It is also less likely that a greyhound has been abused. Greyhounds have thin skin so can get injured quite easily. Greyhound racing is a business (some people feel very strongly that it is a business that should no longer exist) and the fact is that an injured greyhound is not going to win races so it is in everyone’s interests to keep the greyhound in the best condition possible, at least, while they are still winning… In some ways, it’s all to easy to imagine a racing greyhound’s life. It mainly consists of the routine of living in a kennel with another greyhound, travelling to stadiums (which means they are good travellers – another desirable trait ticked off), and racing. The domestic human world is unknown to them. They don’t know about televisions, hoovers, washing machines, or all the paraphernalia of life. Racing kennels are usually in the countryside so they have no experience of walking past lorries, buses and other traffic. They might never have encountered a flight of stairs before. Also, they probably have never met other breeds of dog; it’s quite a steep learning curve to discover that chihuahuas, wolfhounds and every dog in between are all the same species as you!
The great thing about an adult dog is that you can get an idea of their personality. We adopted our greyhound from Suffolk Greyhound Trust and they were able to match us to a greyhound, who was calm and well-behaved. This also meant that we could visit her a few times to get to know her before committing to adopting her. We discovered that she loved the toys that we brought with us, and she loved to play. Usually, greyhounds don’t play that much and don’t do tricks. Our greyhound has almost got the hang of fetch, after 3 weeks intensive training by the Allergy Bros. It’s really wonderful to hear the joyful laughter from Allergy Robot, when he is playing with her.
We are only a few weeks into our dog-owning adventure, but so far, it is going better than we could have ever expected. I’ll update you in a few more weeks to see if the rose-tinted glasses have cleared a little. I’ll leave you with a photo of Allergy Hound doing what she does best!
Autism and Employment
One of our dreams for the Allergy Brothers was to provide a paid internship programme for young, neurodiverse people. Honestly, it felt like putting the cart before the horse; providing a programme and then fitting young people to it. I think that we should really be finding the vocations of neurodiverse, young people and then working out what needs to happen to make that a reality. Therefore, we are having a rethink.
The core issue, employment for neurodiverse adults, is still a pressing problem. The National Autistic Society surveyed over 2000 adults, or a person responding on their behalf, in 2016. Just 16% of adults were in full-time, paid work. Only 32% of autistic adults were in some kind of paid work, compared to 47% of disabled adults, and 80% of non-disabled adults. 40% of those surveyed had never worked. 77% of the unemployed, autistic adults said that they wanted to work. There is definitely a need for support into employment.
I can’t help thinking that the world is missing out on some impressive skills. In his 2014 book, Outliers, Malcolm Gladwell suggested that a person needs to undertake 10,000 hours of deliberate practice to become an expert. The Diagnostic and Statistical Manuel (DSM-5) includes “restrictive and repetitive patterns of behaviours, activities or interests” present since early childhood as part of the criteria for a diagnosis of Autism Spectrum Disorder. It’s irritating that a child practising the cello for hours a day is a prodigy undertaking deliberate practice, but an autistic child learning about underground railway systems is seen as disordered. I think a more positive way of looking at “special interests” is as deliberate practice. Let’s get autistic experts working in our community!
Luckily, a team of people are organically forming to try to make this dream a reality. I am really pleased to be part of this. Our first step is to find out what is already available so I am putting a new page on this website with a list of resources as we discover them. Please share any useful resources in the comments too.
We have decided it is time to put the Allergy Brothers Cake Company to bed for a while. We may return in the future. There are two main reasons, and they are both very positive, happy reasons.
Firstly, the Allergy Brothers seem to be finally overcoming, at least some of, their allergies. This is fantastic news and is opening up a world of new foods for them to try. It’s keeping me very busy coming up with foods for them to trial that contain the target ingredient, but none of their other allergens. It’s basically my full time job now! It also means that it increases our risk of cross contamination because we have ingredients, such as dairy, in our kitchen. We takes allergies very seriously, of course, and we just wouldn’t want to risk a customer having a reaction from one of our cakes. The second reason is that we are soon to welcome a new family member, Allergy Hound! We don’t think that having a dog and making food to sell to the public in our kitchen are a good combination! You can be sure that I will be spamming our Instagram and Facebook accounts with dog photos very soon. The Cake Company isn’t going away completely as Allergy Wizard has plans to put together a cook book of our recipes.
We had a fabulous time selling our cakes. We met so many lovely people: both customers and other stall holders. We’d like to say a special thanks to the amazing team at Wivenhoe Market, Tom and colleagues at Lauriston Farm, Kate at Wigborough Traditional Meats, and especially Christine at Health and Booty in Brightlingsea, Essex.
I am developing our spring and summer cake ranges at the moment. After the success of our gin and tonic cakes, it seemed like a good idea to try another favourite drink in cake form. Prosecco is a delicious and much-loved Italian white wine, which seems perfect for a spring cake.
Let’s start with the good news. Is Prosecco gluten free? I would never say that all Prosecco is 100% gluten free, but I think it is fair to say, it is pretty much gluten free. Obviously, wines aren’t fermented from gluten-containing ingredients, like beer or whisky are, but there are possible sources of gluten contamination. For example, some wine barrels are sealed with a gluten-containing paste. It is possible that this gluten could contaminate the wine inside. However, Prosecco is produced using the Charmat-Martinotti method, which uses steel tanks, rather than casks or fermenting in the bottle. This means Prosecco is cheaper to produce, and removes the potential gluten source of the cask sealant. Hooray!
Is Prosecco vegan? Maybe. The Charmat-Matinotti method requires clarification of the Prosecco, after the second fermentation. This process is called fining. A fining agent is added to the wine to bond with suspended particles, such as grape fragments, and even soluble substances, such as tannins. Some fining agents are of animal origin: egg whites, casein from milk, gelatin, and isinglass from the swim bladders of fish (as an aside, how did anyone discover this? “Well, Gianni, we’ve tried tiger spleen and armadillo kidney, but it’s not clarifying the wine. Let’s give it one last go with a goldfish swim bladder and see what happens.”) Wines made using animal-origin fining agents may be a concern to vegans. The good news is that there are non-animal alternatives made from minerals, for example bentonite clay or activated charcoal. The only way to know is to check the brand of Prosecco you are buying. Luckily, the fantastic website, Barnivore, has already done the hard work for you. You can be sure that we will check the brands we use to make sure that they are vegan.
Is Prosecco gluten free and vegan? Very probably, and maybe!
Trigger warnings – diagnosis, medical model jargon used, descriptions of demands. Plus, I tend to write like a lecturer with a big stick up my bum, sorry!
We are starting our work experience programme for young people, who are out of education, soon. We might be working with two young people, who have a diagnosis of autism with PDA traits, so I have been busy finding out more about this. I thought I would share what I have learnt so far, while fully acknowledging that I have no expertise or lived experience of PDA.
PDA is a rare (or maybe just under diagnosed?) part of the autistic spectrum. It is characterised by avoiding demands. Demands are expectations, commands, pressures, obligations; essentially, anything that is not generated by the PDAer is perceived as a demand. To a degree, we all do this; I have been putting off writing this blog post for over a week! People, who are on other parts of the autistic spectrum, may be more likely to show demand avoidance when they are stressed too. PDAers, however, experience demand avoidance more frequently and with far greater intensity that neurotypical people do in their everyday life; hence it is Pathological Demand Avoidance. The demand avoidance is also strongly linked with intense anxiety. It didn’t seem clear to me how this mechanism exactly worked, and, I think, this is due to a lack of understanding about PDA rather than me not understanding the literature. It could be that demands trigger intense anxiety and this leads the person to use avoidance techniques. However, some PDAers feel that demands automatically lead to avoidance, and that causes them anxiety because it often leads to conflict with other people or other negative outcomes. The avoidance techniques used can be extreme too: falling to the floor, spitting, violence towards others, self harm, shutting down. Although, there are plenty of PDAers who mask their anxiety so no one else is aware how hard they are working or how challenged they are by the social world.
Demands are a massive part of life, but neurotypical people hardly notice that they are everywhere! Demands can be intrinsic (coming from within us; e.g. a rumbly tummy demands that we eat something soon) or extrinsic (in the environment; e.g. a traffic light turning red demands that we apply the brakes). Demands can be explicit (e.g. a teacher telling us to turn to page 36 in our Maths book) or implicit (e.g. someone telling us that they have turned on the hot water system so there is enough hot water for a shower; the implied demand is “have a shower!”).
I am writing this in the morning. I have just completed getting my children ready for school and doing the school run. The sheer number of demands on me and the Allergy Brothers in that process becomes overwhelming when you start to think about it: getting up when the alarm goes off, making packed lunches, making breakfast, eating breakfast, having a shower, getting dressed in school uniform, brushing teeth, combing hair, putting on school shoes, choosing clothes to match the weather, getting out the door at a set time (might have failed at that one actually…), etc, etc. If each of those demands triggers intense anxiety, then getting ready for school becomes a emotional ultra marathon. At least, I have returned home. Today, my time is my own until I collect the boys from school. I am working on Allergy Brothers business, but I am choosing to do this. The Allergy Brothers are at school, where there is another barrage of demands: responding to registers, sitting in a specific seat, being quiet, listening, lining up, sitting in assembly, and more, and more through out the day. It’s no wonder that so many children with PDA fail to thrive, or even survive, in a traditional school environment.
Unfortunately, it is hard for young people with PDA to access the support they need to be successful. The first stumbling block is that PDA is not widely known about, and that was my motivation for writing this blog post. The second problem is that PDA is not recognised in either of diagnostic manuals (ICD and DSM) that professionals use. This has led to a postcode lottery, where some areas diagnose PDA and other areas don’t. We live in Essex in the UK. PDA is not a diagnosis recognised in Essex, although people can travel to clinics in London, Norfolk or further afield for diagnosis. However, it may then prove difficult to get organisations in Essex to accept these “out-of-county” diagnoses.
Misdiagnosis is also a big issue. PDA is part of the autistic spectrum so there are traits shared with other forms of autism, such as a lack of understanding of neurotypical social behaviour, obsessions, etc. This can lead to a person being given the diagnosis of autism rather than PDA, and this can be disastrous. The strategies that support an autistic person (visual timetables, first-then boards, plenty of warning about changes, sticking to a routine) are often demands! Therefore, these strategies would make things worse for a PDAer. The Allergy Brothers and I have been writing letters to Beth, a young person with PDA. Her story, told here by her Dad, shows how badly things can go wrong when a diagnosis is wrong.
The further stumbling block is that it is possible for PDAers to thrive, but that requires flexibility, adaptability and empathy from others. These are all things that institutions, like a school, struggle with.
I don’t want this to be a negative post, but it would be unfair to not recognise the struggle families have to access appropriate education in Austerity Britain, and also the gargantuan effort that PDAers put into surviving in a neurotypical world. I am going to finish with the positives of PDAers. Many PDAers are loving, creative, imaginative, caring, courageous and resilient. As adults, they can craft lives that they can control, and achieve in the worlds of work, relationships, and parenting.
If you would like to know more about PDA, I recommend going to the horse’s mouth, and reading the book “PDA by PDAers“, compiled by Sally Cat (N.B. – this is an affiliate link.) Also, the PDA Society website offers a wide variety of information for adults with PDA, families and professionals.
Finally, please let me know if there are any corrections that need to be made. I would especially like to hear from those with lived experience of PDA. Have I got this right? Can you tell me more about what you would want from a work experience programme? Thank you.
Thanks to Helen M., who offered suggestions on this post. She pointed out that PDAers are just as likely to shut down as they are to be aggressive in response to demands. She also recommended the following resources : PDA Parenting blog, Riko’s Page blog, Steph’s Two Girls blog, Harry Thompson’s YouTube channel, and The National Autistic Society website. Thank you, Helen!
This is a good news post, and the blog I would have liked to read at the beginning of our journey. Things are going very well for the Allergy Brothers at the moment. It hasn’t always been like this. In the beginning, the Allergy Brothers were two very unwell, little boys. Allergy Wizard was so malnourished that he actually wore out his first pair of shoes because he just didn’t grow out of them. Everything changed, after the boys were finally referred to Great Ormond Street Hospital, and we had a path to navigate to get them safely back to health. The trauma and terror of the early days was replaced with the demoralising discovery, that every new food we tried to introduce, just added another food to the list of their avoided allergens.
We were told that the boys would grow out of their allergies by age three. Their third birthdays came and their allergies were still going strong. Then we were told that the allergies would probably be gone by the time they started school, but they both started school with long lists of things to avoid. We all started to give up on the possibility that the boys would ever grow out of any of their allergies, but it is finally happening! In the last sixth months, they have had successful trials of strawberries, citrus fruits and dairy.
In the last week or so, the boys have started eating products made with rice flour. So far, there have been no reactions. This is literally life changing for all of us as it opens up a world of free from products. The photo that heads this blog doesn’t look like much – a scrappily-made fish finger sandwich. For us, it’s a novelty. A month ago, making a fishfinger sandwich would start with activating yeast, ready to make the bread dough, while cutting the fish fillets into goujons. This did mean that the boys had a very healthy diet, but we now have more freedom. Meals can be quickly put together so I don’t have to constantly watch the time to make sure I have long enough to cook before they get hungry. We need to make sure things really are going well, but they might yet have their first meal out…
Last year, I saw an Instagram post by AllergyKid2006 that showed the impact of food allergies on budgets. Another family commented that it becomes even more expensive when there are multiple allergies. Those families live in the USA, but it certainly seems like we pay more to keep the Allergy Brothers safely fed in the UK too. I wondered how much the difference in prices is exactly, so I took a notebook along to my last supermarket shop…
Allergy Brothers’ Equivalent
Asda Soft White Rolls £1
Asda Fusilli 45p
Asda Semi-skinned milk 48p per litre
Fairtrade Dairy Milk chocolate (45g) 60p
Old El Paso Regular tortillas (326g) £1.49
Asda Golden Balls cereal (375g) 89p
Asda Sunflower spread 90p
Radox Kids Bath and Body Wash (400ml) £2.50
Pizza and Pastry Multimix £2.99
Eskal Corn Pasta £2.02
Ecomil Almond Milk £2.49 per litre
Kinnerton Free From Chocolate (85g) £1.30
Old El Paso White corn tortillas (208g) £1.90
Nature’s Path Munch cereal (300g) £3.89
Pure Sunflower Spread £2.35
Jason Chamomile Body Wash (887ml) £10.99
It’s shocking to see the differences in prices. This doesn’t include additional costs, such as petrol used to travel to larger supermarkets or the cost of electricity or gas to bake the bread mixes.
In the UK, gluten free foods used to be prescribed by doctors so people with Coeliac disease could access them for free. This has been restricted since December 2018 to just bread and mixes, although, in some areas, even this has been stopped. The Allergy Brothers have never been eligible for any financial help, as they have allergies, not Coeliac disease; and they are allergic to most of the prescribable breads anyway!
AllergyKid2006 linked to an American not-for-profit organisation called the Food Equality Initiative, which provides free from foods to families in need, who have allergies or Coeliac disease. As food bank use soars in the UK and the NHS stops prescribing safe foods, it seems likely that we are going to need a British equivalent to the Food Equality Initiative or see families really struggling to feed their children safely.
The Allergy Brothers recently had their annual appointment at GOSH. We are very grateful for their treatment at GOSH, but we were also extremely glad when their appointments dropped from every couple of months to once a year. It’s a stressful and long day. We have discovered a few things that make the day go a bit smoother so we thought we would share what we have discovered.
- Leave lots of time for your appointment. The consultants are also on call for all the children who are inpatients. They are constantly being phoned etc about those patients while running their clinics. This means the appointments are almost always running late, very late. Bring snacks and drinks (water is usually provided in the waiting areas). Bring toys, books, devices etc to pass the time. Don’t book a time-limited travel ticket, unless you like to live life on the edge.
- The People’s Supermarket in Lamb’s Conduit Street sells a range of dairy free and gluten free foods. It’s a wholefoods mini supermarket.
- Allergy Dad appreciated his double espresso from Redemption Roasters in Lamb’s Conduit Street.
- There are lots of chain restaurants in The Brunswick Centre, Bernard Street, if you need somewhere familiar to eat or to check allergens beforehand.
- Our number one top tip is to visit Coram’s Fields in Guildford Street. This is a children only park (no adults admitted without a child!), that is very close to the hospital. It’s great for airing The Allergy Brothers out before and after our journeys from North Essex to GOSH.
- Allergy Wizard recommends taking a taxi to get there! He’s a bit cross that Allergy Dad’s car could go in the congestion zone for this visit so he didn’t get to go in a black cab. When we have used a black cab in the past, the drivers have always refused tips, and some of them have undercharged us to travel to and from Great Ormond Street! Thanks, Hackney Carriage drivers of London!