Keeping the balls in the air?

How do I keep all the balls in the air? The honest answer – I don’t.

Just last week I dropped one. My heart dropped when I saw the number for Footsteps physio pop up on my phone. I knew immediately that I had missed a session, gutted, they are gold dust…..however I am not perfect, I am not supermum. I had contended with a poorly baby, getting 2 girls to 2 schools 30 minutes apart and still managed to get into London for an important work presentation. All on one hour’s sleep….not bad really.

However, dropping balls doesn’t happen all of the time and I haven’t missed anything big – yet. Feedback from a number of professionals leads me to believe that I am reasonably good at managing it all, so if you can bear with the fact that I sound like I am project managing my daughter, I thought I would share some of my tactics.

Now ‘Gorgeous Grace’ has started school, a good chunk of the co-ordination and appointments are managed through school. Physio, OT, SALT and educational activities are all handled within the school day with feedback to home as to how to support the activities. Much better. In the early years however, you are an island managing it all alone with no co-ordination at all. So what did I do?

Firstly I created ‘The Folder of everything’. Over the years it has become several folders. This has been invaluable and I can be frequently seen lugging a bag full of folders to appointments – anyone who believes the NHS systems talk to each other, think again. The times I have been asked for test results, details of examinations etc and I have it all to hand (much to the surprise of the Consultants).

The ‘folder of everything’ includes:
A section for future appointments so that letters are kept together and easily found when arriving at the hospital reception area
A list of all professionals involved and contact details
A list of all tests and results in date order
A section for each consultant e.g. paediatrician, neurologist, genetics, orthopaedics with copies of all letters and notes of any phone call or email correspondence
A seizure log detailing all seizures by date and actions taken
Medication details so I can quickly advise on current medication if needed plus repeat prescription paperwork
Research programme details – for us the ‘Deciphering Development Delay’ study, copies of all communication received and dates of responses from us noted
A section for each other medical area – orthotics (boots prescriptions), eyes, ears etc.
A section for each therapy area – physio, OT, SALT and education psychologist
‘Complementary therapies’ i.e. those sourced privately – details of activities and reports e.g. signing, Riding for the Disabled, Footsteps physio and Snowdrop
Education section with copies of statement, all IEPs and other important documents (now an entire folder on its own)
Transport section (a little empty at the moment, grrr – another blog to follow….)
An advice and support groups section which includes all handouts, contact details and information worth keeping
Wheelchair services details plus manuals for buggy / wheelchair
Disability Living Allowance – another one requiring a folder for itself (always keep a copy of what you send, 2 of 3 have been lost….)
Blue badge (2 applications have been rejected to date but I keep a record anyway for the appeal process as and when I have the energy)

Enough to start with? I think so.

Once I compiled all of this, I then pondered on how it was ever going to be possible to keep
co-ordinating it all and making sure everyone knows what is needed and what we are working on. Fortunate enough to have excellent family and friends, plus a nanny for when I am at work, it was important to keep everyone up to date. The solution? The ‘action plan’.

The first ‘action plan’ was written at the point where so many professionals started to get involved – around the 18 month mark. It comprised of physical, communications and learning activities. Plus key priorities, things to remember and next steps. In one document I summarised what was important right now. We are now on version 12 so a new one roughly every 3 months. Version 11 got to 2.5 pages, version 12 has been narrowed back down to 1 page – much easier to deal with.

The most difficult thing about the ‘action plan’? Prioritisation. I am a mum but I am no expert on what is most important. Advice from up to 12 professionals all to be processed and followed – impossible. I learnt early on to follow my instinct, what is most important right now – Signing? Using the toilet? Actually no – weaning off a baby bottle and getting clear liquids into my daughter takes top priority right now. If we get chance to work on matching games and block building, of course we will, but that can come later.

The ‘action plan’ is shared with everyone involved – family, friends, school, health professionals, therapists. Everyone knows what we are working on. It does not stop other activities taking place but justifiably I can communicate what is most important at the moment. I ask for feedback, I share it with the lead paediatrician and to date have had nothing but positive reinforcement of this approach.

So yes, I wish I didn’t need to have ‘the folder(s) of everything’ or ‘the action plan’. Those evenings I pour myself a glass of wine, update the folders and then pull together the latest plans, I can’t help but feel more like a project manager than a mum. But when I get up the next morning I know everything is in order, the balls are in the air and most importantly it’s the right balls in the air.

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