Mixed Emotions

Well we are back from holiday and survived intact - just.  Daisy as always continues to amaze us with her resilience, courage and positive outlook against all the odds.  She loved being on holiday, she loved the ferry and our little cabin, she loved the apartment, the beach, the places we visited, just being with her family but most of all she loved sleeping in a little bed next to her Mummy & Daddy - that was the most exciting thing for her, to be able to reach over in the middle of the night, tweak the duvet and tell me that she is Peppa Pig on holiday!!!

We are so proud of how Daisy adapts to new situations and takes it all in her stride.  Of course it was hard work; broken nights, juggling meds and IVs and TPN with family plans, but we survived and we can't wait to do it all again, sadly however, we have agreed that this is our last holiday as a family.

For a boy with Aspergers, who has sensory issues and craves routine, darkened rooms and familiar surroundings, smells, tastes and objects, a holiday in France with a boisterous family was maybe not such a good idea.  Theo had recently started on regular medication to help with his chronic migraines and to cap it all he had a bad reaction to the tablets which exacerbated his asperger traits meaning that his sleep patterns were all out of kilter and his anxiety levels were heightened resulting in several high octane meltdowns.  Not good in the confines of a small apartment!

A Military Operation

We are going on holiday, a real family holiday.  This will be the first holiday in a long time.  We have been very fortunate to have two holidays in the last few years but both of these were through two amazing charities Caudwell Children and Torbay Holiday Helpers Network.  These were supported holidays with organised trips, support and back up, we didn't have to do too much thinking or planning and there was the constant reassurance that there were people around to help us if things went pear shaped.  This holiday is a normal, family, self-catering, travelling by ferry, week in France - eeeeekkkk!

We love France, we love the beach, we need to get away, so a few months ago we started working on how we could manage a family trip across the channel.  The first thing was insurance.  OK so it's France, it's hardly the other side of the world, and theoretically our European Health Insurance Card would cover any medical treatment Daisy or the rest of the family would need.  Yes - theoretically, until you start thinking about scenarios...so, what if we have booked our ferries and are unable to travel because Daisy is unwell, we cannot afford to lose several hundred pounds.  What if she has a line infection or septic episode while we are away, well yes she could receive treatment in a French hospital but if she needed a new line then she is tricky to anaesthetise, she has had numerous line insertions and can only really have new lines fitted by the Interventional Radiology Consultant at Great Ormond Street..what if, what if..... When we started going through the scenarios, good travel insurance is essential.  While we do as much as possible to minimise the risk, there are so many elements to Daisy's health that are out of our hands.

The right to be heard

Article 12 (Respect for the views of the child): When adults are making decisions that affect children, children have the right to say what they think should happen and have their opinions taken into account. (UN Convention on the Rights of the Child)



Daisy is constantly telling us about what is going on in her life, asking us to read books, singing, asking questions...she never stops.  Her mind is on the go all the time with all the things she experiences during the day at school, at home and out and about.  Yet Daisy doesn't speak - over the past few months she has been vocalising more and more and she clearly uses more and more words but for Daisy her main form of communication is through signing.  Her hands never stop, even in her sleep.  And when she is tired or unwell and cannot find the strength to vocalise her hands tell us what she needs.

This was a very early lesson we learned with Daisy - communication is not about speaking,  just because she cannot speak, does not mean she cannot communicate with us.  And it also does not mean that she should be denied the opportunity to voice her own opinion.

Costello Syndrome Curve Ball

Daisy has Costello Syndrome -  a very rare genetic syndrome with around 250 reported cases worldwide.  It's caused by a sporadic mutation of an oncogene. An oncogene is a gene that causes cancer, children with Costello Syndrome have a 15% increased risk of developing cancerous tumours, we live with this risk every day.  This week Daisy nearly became one of the costello statistics.

We have been concerned for a long while that we might have been missing something with the pain Daisy gets from her bladder and abdomen, the protocol for children with Costello Syndrome is that they should have regular ultrasounds to check for tumours, and with any unexplained pain or lumps there should be a high index of suspicion for tumour development.  So last Tuesday I took Daisy along for her screening ultrasound to our local hospital, Theo was off school that day, recovering from one of his migraines so I brought him along too to distract her.

We call ultrasounds "jelly on the belly" and over the years Daisy has had hundreds of them and is very used to them, we go along to outpatients,  say hello to the staff and hope to see the nurse we always refer to as "JennyfromXray", we have a picture of Jennyfromxray with Daisy as she had her first ever ultrasound at only a couple of days old.

The Adapted Family

I'm participating in the Define Normal Blog Hop this week where the challenge has been given to us special  needs mums to define what we consider normal in our lives and embrace the things that make us different to other families.

I was thinking about this and started remembering stuff I learned a long (very long) time ago at University when I was an undergrad studying Social Anthropology.  My interest was specifically how peoples adapt to their environment and how communities evolve to take into account the external influences of their environment.  For those of you who are curious, my dissertation was on the significance of the Potlatch Ceremony among the Kwakiutl peoples of the Pacific North West....but that is all another world away..

So I was musing on the blog hop topic, which focuses on the things we take for granted as special needs families which may be perceived as weird or odd in the wider world and I realised that what we all do is adapt, what actually is "normal" anway?  The only thing that is actually normal is a cycle on the washing machine... we have all adapted to fit our own influences that shape our family.  Things that I take for granted like putting a tube into my daughter's tummy to empty her bladder are clearly a bit away from the norm for any 7 year old, but we have adapted our lives to accept that if she is going to avoid urine infections this is what we need to do.  The normal for us is that way because our family has adapted to survive as a unit around the demands of the needs of the individuals in it.  We all do what works for our family unit, regardless of whether or not there are additional needs.

A different operating system

The quote above appeared on facebook a few weeks ago and for me it was a eureka moment, it encapsulated what life is like for a person with Autistic Spectrum Disorder, a person like my son, Theo.  In a moment I realised  what I had been struggling to articulate, that Theo is a Mac and the rest of us are PCs and we are trying to operate a Mac like you operate a PC....and if you are not familiar with these two operating systems it's like trying to manually change gear in an automatic car or speak French in Germany...you get my drift.  In other words the normal (what we perceive to be normal) rules do not apply.  When you have a child with Aspergers, many of the normal rules of parenting don't apply and you have to revisit how to parent in a way that can sometimes completely go against your instinct......

This Mother's Day I will be mostly.........

.....running a 10K race around the country lanes of the Vale of Glamorgan.  In fact over the course of 2012 I will be running 7 races of lengths between 10k and half marathon.  So why having blogged last week that I have very little spare time am I planning to spend some of it with thousands of other people pounding the streets of the UK?

When Daisy was 6 months old we already knew that her life was limited and that the future with her was uncertain, at that time she had just finished her first long stay at Great Ormond Street having been ventilated for respiratory problems, diagnosed with cardiomyopathy, found to be partially blind and extensively tested to eliminate cancer as being the cause of her pain and constant discomfort.  With no family nearby and three other children under the age of 7 to say we were struggling was an understatement.  Daisy's neonatologist referred her to our local hospice, Shooting Star Chase and from that time on we were no longer alone.

A few pics to brighten the blog!

With big brother Jules enjoying the snow

Determined to take Mickey Mouse sledging!

Opening a present from the wonderful PostPals charity

(note the Singing Hands Tshirt - her favourite item of clothing!!!)

At Shooting Star Chase for the Day - shiny and clean after a lovely bath!