Friday, 27 January 2017

Hands up if you love someone with Autism!

 

I love a lot of people with Autism and there are even more people I love who love people with Autism. 

 

Love is the most powerful weapon

Parents of Autistic children face daily battles.  Faced with assumptions and judgements made on their parenting and their child by society, by friends and family, by other parents and even by education and healthcare professionals.  They battle the system; they battle with their child; they may mourn the loss of the life they had expected for themselves, for their child and for siblings.  Their patience is tested at every level and in every interaction.  At least one of my friends blames the end of her marriage on the domino effect of Autism.  But they fight with love!  You know who you are and I am in awe of you and your children.

No such thing as an expert

One of my closest friends has two beautiful boys both with Autism and both completely different.  At a recent school visit, a staff member introduced herself as an ‘Autism expert’.  As she retold the story we both laughed at the idea that one person could claim to be an expert.  But each parent can be an expert in their own child, how best to help them flourish and what triggers can be avoided. 

Of course, all parenting is a wonderful and challenging experience but I thought in this blog post I would give an anonymous voice to parents of Autistic children and ask them how we can help support and love them and their children in a positive and helpful way.

Another friend explained, 'As a parent of a child on the Spectrum, your life is always on the edge.  For a child on the spectrum, their life is always on the edge!

When I try to explain how each day starts for my son, I remember what I was told on a course we attended when trying to understand Autism and help him.   They told us each child on the Autistic spectrum wakes every day with a level of anxiety higher than many of us reach by the end of the day, and every step of the day can raise that level until a meltdown is inevitable.  



They used the analogy of a fizzy drink bottle.  Most children on the spectrum start the day with their bottle already half fizzy.  Every minute can add more fizz...Are his clothes where he expects them to be? Can he get into the bathroom when he needs to? Are his clothes freshly washed and maybe a little bit tighter than the day before? Has someone cooked breakfast and different smells are circulating around the house?   Are his socks irritating him when he puts on his shoes? All these unexpected events raise the fizz level instantly the moment he awakes and if calming activities are not put in place to reduce the fizz, that bottle will fizz over. Emotions will escalate until at an unexpected time it results in a meltdown, usually hours after the initial event.'

What is a meltdown?

A meltdown looks and sounds like a tantrum. But they are very different.   A tantrum has a purpose, usually to get something or someone’s attention and usually stops when this is achieved, but the meltdown is a reaction to something usually beyond their control and will not suddenly stop.

A friend explains; 'having tight routines in a day is to make as much of the day as predictable as possible to help keep the levels of anxiety down and lessen the chance of a meltdown.  However, so many factors  can influence that including unavoidable changes to the routine;  sensory matters (too noisy  – too smelly – too bright etc), and also other people’s reactions and behaviours.  At any point the balance can be altered by a comment, an action, or even inaction and all the planning and preparation to keep things calm can be overruled with extreme consequences.

At the height of a meltdown, my son is usually unaware of what is happening or what he is saying or doing.  Keeping him and others safe is the priority. You cannot talk to him as words cannot be heard. You cannot crowd him as he will feel trapped and the fight or flight emotions kick in.  It is best to quietly be there without eye contact, ignore the shouting, protect against the throwing and be ready to distract to get to a calm situation.'


What can I do?

Thank you to all those courageous friends who have contributed to this list ❤️

'Celebrate with me my child’s uniqueness and strengths (there are a lot of them!)'

'Lend an ear (and sometimes a tissue) when times are difficult.'

'Most importantly, don’t judge.  Don’t judge my child and don’t judge us as parents.  If you don’t understand Autism, that is ok.  We’ll try to explain but remember that Autism affects every person differently'

'Talk about it.  Ask what you can do to help.  Don’t wait for them to ask you.'

'Don’t take things personally.  Don’t be easily offended.  Check with the parent and listen to their advice.'

'Remember if you have met one Autistic child, you have met one Autistic child.'

'Please be understanding. I think one of the key things I worry about is that people will instantly label my daughter as rude.   I know a few children with more severe Autism that come across as selfish and spoiled because they don't understand instantly the need to share or if there is a lot of stimulation and noise around them, they may not answer if spoken to or they have poor spatial awareness so push into people!'

What charities can I support?

 

You can support local charities who offer support to Autistic children and their families!  There are two charities I am supporting as part of my Fortycubed birthday celebrations.

Autism Berkshire's mission is to help and support anyone living with Autism in Berkshire. They aim to 'enhance the current provision of services and support, with the purpose of improving the quality of life of people with Autism and giving them maximum independence'.  To donate as part of the Fortycubed campaign please click here.

Several of my friends have benefited from visiting Camp Mohawk'a multi-functional day centre for children with special needs and their families, set in 5 acres of beautiful countryside, just outside Wargrave, Berkshire. Throughout the year the centre provides a range of activities, facilities and natural space to encourage children with a variety of special needs to play, socialise and learn in a secure and caring environment'. To donate as part of the Fortycubed campaign please click here.

I have learned so much through talking to my friends in preparing this post.  I have also been enjoying reading 'My Son's Not Rainman' by John Williams who opens the book with a quote from an unknown source which sums up beautifully how we, as friends and family, could rethink how we approach Autism.

'I would like to travel the world with you twice.  Once, to see the world.  Twice, to see the way you see the world.'







Saturday, 14 January 2017

Sophie


   

 

 

“A woman is like a tea bag; you never know how strong she is until she’s in hot water.” 

Eleanor Roosevelt




Beth has never indulged in drama.  She is a powerhouse of inner strength. In our 30 years of friendship we have been through some ‘stuff’.  I will never be able to thank her enough for taking on my pony when I disappeared for days on end to the hospital to be with my mum.  And yet, Beth has always quietly dealt with what life throws at her and then tells me afterwards.
 

So when Beth was told to prepare for the possibility of her daughter’s little body being overcome by meningitis; when she was asked to call her parents home from a holiday abroad so they had an opportunity to say goodbye; Beth didn’t call me.  About a week later, a composed and hopeful Beth picked up the phone.  She explained what they had been through and that things were looking better for Sophie.   



Sophie is now a fabulous and fiercely independent almost 5 year old who seems unaffected by what she experienced.  Beth, on the other hand, will forever by affected by those events and forever grateful for the happy outcome whilst acutely aware that not all families have been so fortunate.  So together, as part of my Fortycubed plan, we will be fundraising for the two charities that supported Beth through this difficult time and also to raise awareness of some of the potential, lesser known signs of meningitis. I asked Beth to give us an insight into this traumatic experience.

Don't wait for a rash


'The first sign I had that something was wrong was Sophie being sick. This started at 4pm on a Friday totally out of the blue.  At this stage she had a slight temperature but not too high so I put it down to a sickness bug.  I checked on her several times during the night and she seemed to be improving so  I was reassured that it was just a bug and she would be better by the morning.  

My first indication that something was seriously wrong was at 7am when she had thrown up some blood, was very limp and lethargic.  Her skin had become blue and mottled.  Her temperature was very high and she had cold hands and feet.    I called 111 who sent an ambulance.  Within half an hour of arriving at A&E, she had collapsed and was rushed into the resuscitation unit.   

We were left sitting outside for half an hour while they put her onto life support. The consultant came out to us and sat down next to me;  she put her hand on my knee and said ‘Sophie is seriously ill and I am very, very worried about her’  At this time we were told her chances were not good and to call in any family members who might want to see her.   It was one of those surreal moments where you can't believe it is happening to you.   

She was then transferred by ambulance to the John Radcliffe Paediatric intensive care unit in Oxford.  At this stage they did not know what was wrong with her but she was on life support and they gave her antibiotics immediately even though they did not know what they were treating.   A rash appeared on her hands and feet on Saturday afternoon, 24 hours after the first signs of illness.  I think people always think the rash is the first thing to appear but not in our case it was the last thing to happen.   Septicaemia had already set in by then.

The consultant advised us on the Friday when she was first admitted to hospital that they would normally perform a lumbar puncture but, as her platelet count was so low and her blood was not clotting, they could not do this.  Instead they had to take a sample and grow a culture in the lab which takes 48 hours, so it was Sunday afternoon when we were told she had Meningococcal Septicaemia and Meningitis (type W135).  


We were very fortunate to be in the right place at the right time when she collapsed and the doctors got antibiotics into her straight away before they knew what was wrong.  By doing this, they saved her life.  Later during the week we saw a plastic surgeon who came to look at her hand as they were worried about the extent of the rash and discussed with us that they may have to amputate her hand if too much of the tissue had died.  At this stage, it seemed a small price to pay after nearly losing her but thankfully enough of the tissue had survived and her hand recovered.



Sophie remained in an induced coma for a week in intensive care and was then transferred back to the local hospital and spent a further week on the ward.   In total, she was in hospital and on antibiotics for two weeks.    I was then advised that a further four weeks recovery was needed at home.  However, children do recover quickly as they don’t carry the emotional baggage we do and she was back to her normal self soon after leaving hospital.  



The road to recovery

We then had to go for three further follow up appointments with the consultant over the course of the next year.  Sophie was also referred to the Audiology Department for a further year where regular checks were carried out on her hearing which, thankfully, has been left unaffected.  The only possible long term issue for Sophie now is minor brain damageI was told that this would not become evident until she started school so I have spoken to her teachers and they will advise me if they have concerns.  



As far as lasting effects on me there have been a few!  I was offered counselling whilst in the hospital but at that time I declined as I just wanted to be with Sophie. I felt selfish worrying about myself when she was so ill and had no idea of the long term effects that decision would bring.  I became very anxious in the year following Sophie’s illness and when I finally saw a doctor I was diagnosed with Post Traumatic Stress Disorder.  I have received help for this but it is an ongoing thing that I have to learn to manage and, like Jac said in her blog on Mind, it is a beast that walks among us. I still struggle with it and some days are better than others but compared to what many other families have been through, I consider myself lucky.


My words of advice for parents would be not to wait for the rash to appear as by that point it may be too late.  If the child has a high temperature and really does not seem right get them checked out straight away.  Don’t feel you are overreacting or wasting the doctor's time.  It is always better to be safe than sorry.'


How can I help?

Apart from raising awareness of the signs and implications of meningitis, Beth and I are fundraising for Meningitis Research and Ronald McDonald House Charities

Meningitis Research's vision is to live in a world free from Meningitis and Septicaemia.  They research Meningitis with a hope to one day eradicating this disease.  They also offer advice and support to anyone affected by the disease.  As an example, they offered Beth a befriending service so she could speak to other parents who had been through the same experience. 

Ronald McDonald House Charities gave a lifeline to Sophie's parents when she was ill.  They were given a private, clean, comfortable room with an ensuite bathroom including free toiletries.  The room was in the hospital only a two minute walk (one minute run if necessary) back to Intensive Care and they had a phone in the room with speed dial to the ward.   


Beth is a qualified massage therapist and we will be running a "Massage Marathon for Meningitis' as part of the Fortycubed fundraising campaign in the coming months.  In the meantime, if you would like to donate to either of the charities Beth has chosen, please do so via the following links:

www.justgiving.com/fortycubedformeningitis

www.justgiving.com/fortycubedforronald


 
 

 

Saturday, 7 January 2017

#mentalhealth



Growing up, I watched a TV programme called Jonny Briggs.  An irritating classmate of the programme’s namesake would caveat every comment she made in class with the phrase ‘my mum, who’s a nurse...’  I have gone on to paraphrase this throughout my adult life when talking about my sister.  Whenever I refer to a piece of advice or reassurance she has given I endorse its validity by saying, ‘my sister, who’s a clinical psychologist...’  It gives weight to the advice or reassurance I’m imparting.  It also goes some way to letting people know just how proud I am of my big sister.

Among my adult friends, mental health is the single most life limiting issue and many of them are now seeing similar issues evolving in their children.  Reduced stigma and increased awareness must now lead to us equipping these children with the tools to self manage when they can, and seek help when they need it.   

When my sister made the choice to study Psychology I was a self absorbed 14 year old and I didn’t think to ask what made her choose that career.  By the time she had left university, our mum had been diagnosed with terminal cancer and we were muddling through that experience in our own peculiar ways.

There is a saying that for every tear that you shed, God plants a seed in your future.  I have a sneaking suspicion that my sister chose that career because of a seed that was planted in my grandmother’s life.  She had suffered from mental health complications from as early as my dad can remember. 

Even closer to home, I had suffered with insomnia from the age of six and when I was awake, so were my parents.  I have an enviable imagination which terrorised me at night and still would if I didn’t employ techniques to limit its effects.  Dad was adamant he didn’t want me ‘in the system’ having seen the medication tactics used to manage his mum.  So they struggled through while I asked them awkward questions such as ‘why did you have me if you knew I was just going to die in the end?’ and other gems.

So maybe my sister wanted to break the family cycle or maybe, without being egocentric, she wanted to help me.  Whatever her reasoning, she has walked with me through my adult life, equipping me to deal with my own head most of time and keeping me alert to the triggers which might indicate I need professional help. 

And I believe I am normal.  Once you start opening up to friends, you find many have quietly suffered with depression, anxiety, panic attacks and I have one friend with crippling OCD.  Several of my friends will open up about their children self-harming and at least two of my daughter’s peer group have been affected by familial suicide.  You may not think mental health issues are affecting you but it is a beast that walks among us.

So I am supporting MIND as part of my 40th birthday celebrations because it affects all of us whether we realise it yet or not.  


To find out more about the charity please visit www.mind.org.uk