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.” – couragecenter.org

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.

Healthcare Toolkit

AASPIRE Healthcare Toolkit: Primary Care Resources for Adults on the Autism Spectrum and their Primary Care Providers. There are two key sections- one for Patients & Supports, and the other for Healthcare Providers. The first section contains forms and worksheets, that outline the steps required for different parts of accessing healthcare (eg making an appointment, what to bring to the appointment, symptoms worksheet, things to do after the appointment)- in detail, using simple language. The Autism Healthcare Accommodations Tool (AHAT) creates a customised accommodations report for individuals to give to their healthcare providers. There is also step-by-step information for navigating the primary healthcare system, tips for staying healthy, explanations about an individual’s rights in healthcare etc.

In the Healthcare Providers section, I particularly liked the section about Caring for Patients on the Autism Spectrum. So many of the issues raised in articles like this and this are addressed here, eg don’t rely on spoken communication, use precise language, allow time for slower processing speed and real-time communication, minimise distracting sensory inputs etc- all with practical tips accompanying the description.

A very useful resource!

Autism, puberty and respect

Autism, puberty and respect, by Jess (Diary Of A Mom blog). The first thing that I really like about this post, is her explanation why she won’t discuss her daughter’s puberty (respect and privacy).  Her main message is “talk to your kids about puberty”.  Even if they’re non-verbal, and showing no sign that they’re registering what you’re saying, presume competence and talk anyway.  Find a way to communicate information to them (she lists some examples), because:

“There is nothing more disconcerting, terrifying even, than your body changing without warning. Than hormones toying with your moods and jarring your emotional world without explanation. These things, without context and without explanation, are confusing and terrifying.

You see, this isn’t something that will wait until our kids are “developmentally” ready to handle it. When their bodies are ready, they will have to “handle” it one way or another. They deserve to know what the hell is happening to them.”

Baby Bridges and a Developmental Tracker

Baby Bridges is a free program for 0-5’s with disabilities and/or developmental delays, and their parents/carers. The standard program consists of two components: children’s play and specialised therapy sessions with qualified therapists; and parent information and training sessions. It is offered at several locations throughout Queensland, however, the location at Auchenflower (Developing Foundation) incorporates the Developing Childhood program and Funtastic Creations.

The Developing Childhood program designed by child development experts (which is available independently of Baby Bridges) is a fantastic opportunity for parents of children to track and enhance milestones from birth to a functional age of 3 – and there are 342 of them in the first three years of a child’s life!  This detailed record-keeping is invaluable for parents who may be concerned about developmental delays, to track and to share with their paediatrician or therapists.  In addition to charting milestones, the program offers a personalised program ofactivities to help stimulate and encourage your child towards their next milestones.  The site offers a one month free trial (which I highly recommend checking out!), and the full cost of the program is $95 (total).