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Thursday 16 Aug 2018
How We Cope PDF Print E-mail
Saturday, 02 May 2009 13:49

How we cope

Lots of people say to me "how do you cope?" or "I couldn't do that" I smile, or sometimes sigh on the inside, you never know what you can do until you need to do it!

I thought it might be helpful to other families to share some of the practical ways in which we do manage day to day.


Ben's Professionals

Since he was born an increasing number of professional people have helped to care for Ben such as doctors and therapists, his "professionals" are:


  • Paediatrician
  • Paediatric surgeons
  • Neurosurgeon
  • Orthopaedic surgeon
  • Neurologist
  • Physiotherapist
  • Hydrotherapy Physiotherapist
  • Chest Physiotherapist
  • Orthotist
  • Occupational Therapist
  • Gastrostomy Nurse
  • Epilepsy Nurse
  • Dietician
  • Speech Therapist
  • Health Visitor
  • GP
  • District Nurse
  • Sensory Support Worker
  • Social Worker
  • Osteopath
  • Special needs dentist
  • Music therapist
  • Consultant Geneticist


Medicine Chart

Medicine Chart

Ben takes a long list of medications to help myself and his carers I keep a simple medicine chart inside the kitchen cupboard door so that everyone is up to date with the current doses which I enter in pencil.


Dose Medication Dose
Omega 3's Phenobarbital
Gaviscon Baclofen
Losec Domperidone
Sodium Bicarbonate Xyloproct
Lactulose Paracetamol
Vaseline Flushes
Epaderm Tegretol
Hydrocortisone Doxazosin
Sudocrem Adcortyl in Orabase
Clarithromycin Movicol
Glycerine Suppositories












Ben Manual

The Ben Manual

When I myself had to spend some time in hospital to have our second baby I wrote The Ben Manual as a detailed care plan of how to look after Ben.

I also keep copies of instruction leaflets such as for Ben's special toys, baby monitor and medication leaflets in the manual. Currently Ben's manual includes our own written information/instructions on:


What to do if Ben wakes at night Ben's bedtime medications Ben's Bedtime Routine Information about the house
Ben's bath Ben's wash Nappy

Helping Ben choose his clothes

Helping Ben choose his clothes

Helping Ben use his weather chart

Ben's therapies

Ben's medications

What the medications are for If Ben has a seizure

What to do if Ben is unwell

What to do if Ben's button falls out

Using Ben's equipment Emergency contact information


Record Sheet

Daily Record Sheet

We have recorded Ben's fluid intake each day ever since he was a newborn. With lots going on every day and lots of things to remember when caring for Ben I have made up a Daily Record Sheet.

This is a simple sheet that I wrote using a table on Word so that at a glance I can see Ben's input/output for the day and what he has been doing.

We have written Ben a home therapy program so on the record sheet the activities that Ben does every day are listed with blank space for other activities he does that vary each day to be written in.

If you would find it useful feel free to copy the sheet and amend it for your own use. To see Ben's Daily Record Sheet click here


Personal Portfolio

Ben has a personal portfolio produced free by the charity Cerebra http://www.cerebra.org.uk/parent_support/personal_portfolios This is an easy to read booklet about himself that he can take out and about with him to help other understand his needs. We highly recommend it!


Books we have read

We have read many books to give us ideas for helping Ben meet his potential and generally on parenting skills, those we recommend are:

  • Get a wiggle ON - Sherry Raynor and Richard Drouillard
  • Move it!! - Sherry Raynor and Richard Drouillard
  • Small steps forward - Sarah Newman
  • Show me what my friends can see - Patricia Sonksen and Blanche Stiff
  • A sensory curriculum for very special people - Flo Longhorn
  • Ask? (for families of young people with special needs in Norfolk, UK) contact www.askinfo.co.uk 01603 761333
  • Secrets of the baby whisperer - Tracy Hogg
  • Baby Minds - Linda Acredolo and Susan Goodwyn
  • Horse sense for people - Monty Roberts
  • Ask Supernanny - Jo Frost
  • Sign with you baby - Joseph Garcia
We also receive the cerebra quartly news letter http://www.cerebra.org.uk and any disability news letters available such as from our local council and local Scope families centre.



I doubt there is enough of it for anyone with three young children but this year I have decided I simply must make more of it!

I think for a long time I have discussed with many of Ben's professionals the difficulties of having any kind of family life for all of us with the demands of Ben's needs and appointments, I finally realised that the only one who can make it happen is me!

So I have decided to attempt to:

  • Keep some time per month appointment free
  • Keep one day per week appointment and arrangements free
  • Have a few hours of care one day per fortnight so that I can have a catch up on chores and paperwork time, hopefully so that I won't be such a mad Mummy trying to fit it all in every day (and evening).
  • Have a few hours one day per fortnight or one evening every other month with carers and babysitters so that I can have some time alone with my husband.
  • Have a family holiday.
  • Have a short weekend break away locally with Ben's younger siblings whilst Ben is cared for in his own home.
  • Once a year have one night away locally alone with my husband (to catch up on sleep).


This is quite ambitious I have written to Ben's professionals to ask for their assistance in booking appointments well in advance when at all possible so that we can plan our family time around their availability.


Also lots of people write to us about Ben wanting us to fill in surveys about various services, I am happy to take part but when we are going through a really busy period I just have to realise that I can't do all these extra things and file them in the recycling bin.


Phone Calls

It's very common for there to be about ten phone calls a day on week days to our home from Ben's professionals , routine calls have also been as early as 7.45am and as late as 9pm, however some days there can be as many as thirty phone calls ( I didn't used to deal with that many when I was at work!).

Most professional's phone numbers are withheld so I never know whose calling and if it's worth answering the phone whilst in the middle of changing a nappy..............So we have bought a cheap mobile phone for Ben with a basic pay as you go package and have written to Ben's professionals asking them to use this number.

I keep the phone turned on weekdays 9am - 5pm and the rest of the time I turn it off.

I don't make outgoing calls on the phone so it only costs for me to pick up any messages.

I now know that calls coming through on my home phone are friends or family and that if Ben's phone rings it is probably someone who will need me to stop what I am doing properly and look at the calendar so if I can't I don't answer it and instead ring them back as soon as possible.

I think things are less stressful for me now that we have Ben's own phone.


Making Lists

I often feel like my head is spinning with all the things I have to remember.

So I started keeping a list of things that need doing and a list of people I need to phone, then when I have a few minutes (or am cooking dinner and can put the phone under my ear) I check my list and do whatever is the most urgent.


Make Two for the Price of One

Anytime I cook anything like a pot of chilli or have the time to make something like a shepherds pie or lasagne I always make two and put one in the freezer, I can bet that I will be glad of it on a busier day or a day when Ben is unwell.

And Remembering to Eat

Especially when Ben was a baby I often simply didn't have time to stop and eat, I realised this was not great especially when I was low on sleep and trying to produce breast milk so when I made my husband's lunch box ready for the next day I would also make myself a sandwich so I could just grab it and eat it the next day whenever I could.

We always keep an emergency pizza in the freezer for days when it's super busy with appointments or Ben is unwell and I need to produce a quick dinner.

I always stock up the freezer with ready meals, or ideally healthier home made food that only needs heating up anytime I know that Ben is going into hospital or for the winter months when Ben is likely to become ill at short notice.

I also try and get prepared in the same way at Christmas or any holidays when we want to spend time as a family and I don't want to get tied up in the cooking, although I also love when time allowing I can get all the children involved in cooking something together in the kitchen.


Shopping Online

I get my groceries on-line since Ben was a baby and he was very upset being anywhere except his familiar home. Happily he oftens enjoys short shopping trips these days.

I order lots of the children's clothes this way too, especially for Ben because it's hard to find trousers to fit a boy of 6 who wears a nappy and this way we can try them on at our own pace at home instead of in a hot changing room.

Most of Ben's clothes actually come from Next and we buy a size 8 or 9 even though he's only 6 so they're loose and easy to pull on his stiff limbs




Lots of very well meaning people have often said to me "And what about you, what do you enjoy?". This is a good question, sometimes parents need encouragement to do something for themselves without feeling guilty. But sometimes for me this had gone the other way with professional people insisting that I must have a hobby or go out and do something and I have found myself defending myself for not doing this.

For me I just wanted enough care hours to enable my husband to go to work and there still be enough pairs of hands in our house for the children to be cared for. After that I find it really helpful to have a few hours (6 max) to myself once a week that I alternate between having a day with Adrian and having a day to myself. We usually only catch up on chores and paperwork but sometimes go walking or to the cinema and this I find prevents me from getting run down with the busy day to day running of the household.

I am always surprised when we do go walking how much I enjoy it as if I had almost forgotten that I do.

A simple thing I try to do each day is write just a couple of lines in a 5 year diary to record the children's achievements and interests as they grow and develop.

Whatever it is that is important to you then I think it's really important to try and find time for it, especially your partner, just don't be bullied about it by anyone!



Last Updated on Wednesday, 11 January 2012 11:42