Tuesday, 13 September 2016

What is a One Page Profile or Passport?

Stephs Two Girls September 13, 2016 ASD, autism, Early Support, one page profile, passport, Pathological Demand Avoidance, PDA, PDA Child profile, PDA info, PDA Life, profiles

Back when I ran courses for parents under the Early Support banner, one of the most popular areas for discussion was one page profiles, or passports.

Early Support was a government initiative to help all parents of children with additional needs navigate their way through the very complicated maze of SEND (Special Educational Needs and Disabilities).

So often, parents are sent away with very little information following any sort of diagnosis. In our case a leaflet for a local support group was handed over and not much more. It can feel like you suddenly have a blindfold on, with no idea how big the maze is, where the exit might be or what it might look like even if you could see it.

The best source of help and information, as the above poster suggests, is generally other parents. It can be very hit and miss as to who you happen to link up with and what they know though.

That's where Early Support courses came in; they were a way of pulling all that information together. I was no expert, but I soon found out that I knew more than some parents who had already been in the system for years. I was one of the lucky ones in terms of who I met along the way. The poster below was one of my favourite resources used on the course, designed to empower parents to believe they held the vital knowledge and were worth listening to.

Sadly, as with so many government initiatives, funding was pulled and Early Support no longer backed as a necessity for parents entering this maze. Their resources are all still available for free though thankfully, although somewhat tricky to find - to help, here's a link to their 'Our Family, My Life' document.

Some advice I always like to pass on to parents new to this game is the suggestion that they develop a one-page profile for their child with additional needs. The idea is that this short summary is quick and easy to read, and highlights the most important areas of understanding that anyone working or helping with their child might need.

The Early Support template is as follows, and this will be sufficient for some families:

However I was lucky enough to see a few different examples when Sasha was younger, and hers includes a bit more information than that. I also felt it was important to include a photo of her with her sibling on it; there is a knock-on effect of Sasha's disability on her older sister and I wanted to ensure others didn't lose sight of that. It's not just about one child, it's about the whole family.

So below is our most recent version for Sasha. If I'm honest, I did think twice about sharing it here as it is of course, a personal document. However, when I think back to those early days after diagnosis, I remember drowning in leaflets and information, files and paperwork, and if I can help even one other family who have a child similar to ours, who could perhaps get ideas from the phrases we use, then it's worth sharing.

This year I cheated slightly by making it double-sided, to include some more generic PDA strategies. That's the beauty of this profile though; there are no rules. You can design what you want, it can be anything from a simple Word document to a flashy colourful powerpoint slide - it's whatever works for you and your child. The idea that it is one page is purely to make it more accessible to others; as much as we'd like them to read and understand all the finer details of our wonderful children, we do have to accept that time is always at a premium and so short and to the point works well.

Sasha's is updated every year and passed on to the new class teacher, to teaching assistants and any other members of staff who will work with her. The profile can also be handed to leaders at clubs outside of school and anyone else who may benefit from the information. The more we educate others about our child, the more chance there is of them being understood.

For more Early Support resources and other information please do take a look at councilfordisabledchildren.org.uk. If you type one page profile into Google and click on images you will see many more ideas too.

For more information about PDA, please read the book shown below: 'Understanding Pathological Demand Avoidance Syndrome in children'

(this is an affiliate link and I may receive a small commission if you visit a link and go on to buy anything. It won't cost you any extra)

Book cover for Understanding pathological demand avoidance syndrome in children, by Phil christie, margaret duncan, zara healy and ruth fidler

(Other PDA books can be found in my 'Books about the Pathological Demand Avoidance profile of autism' review post.)

To find out more about our experiences, please check out our 'About Us' page or the summary of our experience in Our PDA Story Week 35. If you are looking for more online reading about Pathological Demand Avoidance, the posts below may help.