Changing Places toilets

These full-sized toileting facilities first came to my attention a couple of years ago, when Abi was too big for baby change tables, standard cubicles were far too small, and our only option was to change her on the floor of disabled toilets, using a garbage bag underneath her for some small measure of hygiene.  At that time, although Changing Places were growing in the UK, they were still very limited in Australia.  There is a campaign page on their website, for people to nominate locations where they would want to see such facilities.

Transitioning to Gluten- and Dairy-free

I have seen numerous questions on various Facebook groups about transitioning to a gluten- and dairy-free diet.  I can’t comment on whether or not such a diet would be beneficial to other families, but I do know that it made a significant difference to ours.  We transitioned gradually- I replaced one gluten or dairy food with a suitable alternative, until the whole diet was gluten and dairy free.

Gluten free is much easier these days than it used to be, due to the number of packet mixes and ready-made products available in the supermarket.  Once people have a suitable bread recipe (I use this one), there are sufficient gf flour mixes, pasta etc to continue to use favourite recipes with some simple substitutions.  The convenience is appealing, though the gluten-free packaged foods often contain just as many additives as gluten products. As there are certain gf flours that I don’t tolerate well, we make our own flour mix based on these measurements.

We found dairy free to be a little more challenging.  There are many different dairy-free “milks”, few of them taste much like cow’s milk, and most are very thin- more like skim milk than full-cream.  The flavours are all very different, and we found that it was simply a case of trying several styles and brands of dairy-free milks until we found something we could work with.  Nuttelex is a good dairy-free substitute for butter/margarine, though we have used mild-flavoured oils, like rice bran oil in the past. It can cause a different texture/consistency, but we still found it acceptable. There are a number of coconut yoghurts becoming available in mainstream supermarkets.  Health food shops like Flannerys sometimes have dairy-free alternatives for cheese, sour cream etc- but most of these are either based on soy or nuts, and availability can vary.  We have decided not to use any of these products.

We can make white sauces using non-dairy milk, Nuttelex, cornflour (or another gf flour if corn isn’t tolerated)- and extra salt can make it taste a bit cheesy.  We sometimes add crushed plain crisps as a topping to pasta dishes or casseroles instead of cheese.

Most people seem to be able to convert their main meals to gfdf with few problems, but are often stuck about what to do for breakfast, baking and desserts, therefore I will focus on these areas with the recipes I upload here.

Hospital passport

The UK’s National Autistic Society has some great resources, including this hospital passport.  It can be completed either online then printed, or in writing, in advance of any hospital visit- and I think would be good for any medical appointment.  As well as the usual personal details, medical history and contact details for the patient’s significant people, it includes boxes to describe how the Autistic person would like hospital staff to communicate with them, how the Autistic person communicates, experiences pain and communicates pain, and what causes distress. The guidelines document contains many questions to consider when writing statements to include in the hospital passport. For example, when considering how staff are to communicate with the Autistic person- do questions need to be short and specific, do you need things written down, is there a preference for pictures or symbols, will pointing/demonstrating help, will you need a lot of time to think about and answer questions?  The final page describes the five key principles of the Mental Capacity Act, and states “Because I have autism please do not assume that I do not have mental capacity”.

Communication about disabilities

Disability Services Queensland has put together some great resources about how to communicate with people with disabilities, and additional tips about guide/hearing/assistance dogs.  Towards the bottom of the page, there are several links- two in particular are exceptional.

The first is “A way with words: Guidelines for the portrayal of people with a disability”.

The purpose of this booklet is to promote inclusiveness and the fair and accurate portrayal of people with a disability.  It is intended as an aid for professional communicators, such as journalists, writers, producers and broadcasters, and provides suggestions for appropriate language, interviewing techniques and media coverage involving people with a disability.  

While that description does sound rather dry, the booklet is very engaging and readable, with great cartoon illustrations throughout.  Some of the recommendations include emphasising individuality (eg emotions, interests, problems, talents, frustrations, faults and roles), not disability; avoiding superhuman or excessively emotive portrayals, and not focusing on the person’s disability unless it is important to the story. There is also a list of words to avoid, with acceptable alternatives.  One suggestion given was to use the phrase “uses a wheelchair” instead of “confined to a wheelchair” or “wheelchair bound”, because a wheelchair provides mobility, not restriction.

The other link that I found useful was the Medical Signing Board.  There are Yes/No/I Don’t Know options across the top, front and back models of the body in the middle, 15 options for medical issues on the left (eg hot, cold, vomit, headache, bleeding, broken, seizure), 12 communication options on the right (eg need more information, call someone, worried, too loud, hungry), and a visual 1-10 pain scale at the bottom.  The second page lists some things paramedics might do (eg blood pressure, take temperature, bandage, medicine), a short social story, visuals for wait/be still/calm down, and some interaction tips for the paramedics.  Very thorough- wish I’d had this for Abi’s last admission!

Feeding issues

We’ve tried many different strategies to expand Abi’s food repertoire, but it’s still very limited.  This week, I have been reading a number of websites that were shared on one of the Facebook groups I participate in, and am hoping to implement some of these strategies soon.

Ellyn Satter’s Division of Responsibility in Feeding – this is very different to the traditional models!

Feeding tip for sensory or selective eaters: Where to place food so not to trigger immediate refusal (Feeding Doctor) – these explanations make so much sense.  Don’t confront children with loaded forks or plates directly in front of them- have them close enough that the child can reach for them to satisfy their curiosity without feeling pressured.

What it really means to “offer” food (Feeding Doctor) – my two favourite reminders from this article are:

Avoid thinking of foods in terms of what they “like” or “don’t like.” Kids are fickle, and what they reject one day, or month, they will for no reason pick up again, but they have to see the food again…
The child has to have time to throw out the first rejection, or push back, and be met with no resistance, pressure or attempts to convince or coerce. The initial reaction of most children, not just those with sensory issues is “no.” Wait it out…

Patient File Checklist

After two emergency trips to hospital this year, I’ve finally assembled a special folder for our younger daughter, Abi. This Patient File Checklist contains some good ideas of what to include in it, and I’ll add a few more below.

The latest reports between her doctors.
A current pathology request “wishlist” (ie tests that her doctors would like completed if opportune to do so).
Results from her last few tests (for comparison and trends, if necessary).
An annotated list of drugs (sedatives, anti-nausea etc) used with her previously, both those that were effective and those that caused unpleasant reactions/side-effects.
Prescriptions for medications (even something as simple as melatonin to help her sleep- I know what dosage to give her, but not what strength the mixture is).
A current list of the supplements she’s taking.
And I’m hoping that now I’ve assembled the folder, I won’t need to use it :).

Feeding tips

Tips for children with feeding disorders, by Kathryn (Singing through the rain blog). She outlines 12 tips for helping children with feeding issues, using the SOS approach to feeding (Sequential Oral Sensory).

“The SOS Approach to Feeding is a developmental feeding therapy that allows a child to interact with and learn about foods in a playful, non-stressful way. It helps increase a child’s comfort level by exploring different properties of the foods, including the color, shape, texture, smell and taste. The child is encouraged to progress up a series of steps to eating using “play with purpose” activities. Parent education and involvement are an essential part of this feeding program.” –

Picky Eater Strategies

3 Picky Eater Strategies that Work, by Sarah Remmer. They may work for you … they may not, but they’re practical and simple, and similar to what we’ve used in feeding therapy (SOS approach by Dr Kay Toomey- Sequential Oral Sensory).

Just for interest, this post has the 32 steps to eating chart, plus some description about how it was implemented.