Mental Health and Autism

I have been asked to define my thoughts on Mental Health provision for Autistic children in Cumbria. 

Putting things on paper always helps me to 'think'. Reading back I can see more clearly when I'm being too subjective or taking things personally so this blog post is slightly different from normal - it's my personal thoughts and experiences of CAMHS in the Furness area.

Following a report in our local newspaper the North West evening Mail about the death by suicide of Ashley Jake Keenan, an eighteen year old boy  with Aspergers syndrome, the outpouring of sympathy to his mother Amanda Morris from the Autistic community was immense. As comments poured in, the newspaper realised that they had a story worth pursuing. Children and adults with Autism in Furness were not getting the support they required from Mental Health services in the area, waiting lists for diagnosis were too long, specialist knowledge in Autism was lacking and parents were dissatisfied. Parents came forward with their personal stories in their dozens and .thanks to social media networks, they realised they were not alone in their anxieties for their children. Four articles were eventually written by Emma Preston with the help of parents of children and adults with Autism and published in the North West evening mail .Those articles  were well balanced and reflected the views of many of the Autistic community. The message we wanted to get across was that we wanted better Mental Health provision in the Furness area for our children who are suffering because the diagnostic process is taking too long, children who have anxiety problems or self harm are not being seen quickly enough and ultimately,partly because of a lack of help and support both from CAMHS and other agencies this is leading in extreme cases to suicide. The content of those articles together with the comments made can be viewed here:


http://www.nwemail.co.uk/news/barrow/barrow-asperger-s-mum-hopes-other-families-can-be-spared-her-pain-1.1015021?referrerPath=/1118665


http://www.nwemail.co.uk/news/barrow/early-diagnosis-is-key-to-getting-help-1.1015817?referrerPath=/1118665

http://www.nwemail.co.uk/news/barrow/dalton-family-tells-of-battle-with-asperger-s-1.1016013?referrerPath=/1118665

http://www.nwemail.co.uk/news/barrow/barrow-mum-hits-out-over-lack-of-asperger-support-1.1016430?referrerPath=/1118665

At the same time as parents were making their voices heard, an independent report by the Cumbria Clinical Commissioning Group and Cumbria Partnership NHS Foundation Trust,revealed major concerns about CAMHS which highlighted the shortage of staff (they had less than 2/3 of the staff required) and lack of specialist knowledge in Autism and the department was told to improve..http://www.cypnow.co.uk/cyp/news/1075425/cumbria-camhs-radical-restructure

Two months on, despite promises to 'improve standards', parents still feel that the are getting 'fobbed off' by the service.Their lack of faith in the service (through previous experiences) is immense and damaging ,and the impression that parents are left with is that no one cares about their children and that they must deal with the issues alone.

Last time I visited CAMHS our family was reaching crisis point, my husband was working away and my son was unable to cope with the change in routine . I had taken a sabbatical from my job as a lawyer to try and keep things as 'normal' as possible but my son's anxiety was so great that I was dealing daily  with violent outbursts each evening and my other two children were left to their own devices to avoid getting hurt. I was given an appointment to see a locum who had no notes on my son's previous history and who during the course of our conversation told me I was 'overpowering' and that my son would be better off in school. It was clear that she had little experience of either Autism or Home education and I came away appalled at her judgemental attitude and obvious lack of expertise and very angry.As I result I vowed never to go back to an appointment unaccompanied again.

With the promise of a new restructured system following the newspaper articles in November I decided to give them a second chance.New consultants were to be appointed to improve the service . As my son was not sleeping and was becoming less and less able to go out ( to the point of holding a knife to his chest) when I suggested we go out. I went to see our GP who shared my concerns about CAMHS but told me it was the only route available to him. Because of the threat of self harm he referred us urgently.

 That was in November and we have not heard a dicky bird from them. I haven't pushed them - this is a test about whether or not my son matters. I know at some time we will reach crisis point again and I like many other parents in the area will be on the phone on a daily basis pleading for help for my son only to be fobbed off with excuses about waiting times and lack of staff.

This isn't a new situation it has been going on for years. Perhaps they don't care if my son is suffering or if it is impacting on the mental health of my family. I am told by other parents that they have been told they  will be seen if their children  are suicidal, otherwise there is a wait of a year for a second appointment! Surely it should never get to that point .Fire fighting isn't the way forward, care and compassion is!

What we need is a clear process explaining to parents what services are involved when their child is diagnosed with autism, who they will need to see and how long it is likely to take. A care coordinator needs to be appointed to guide families through the process and to direct families to the next service after a diagnosis is made.That coordinator could provide advice to parents and children in crisis awaiting an appointment.  

Thankfully there is always a ray of hope.The love and support of the NAS Furness parent support group which has blossomed from a need to help each other in an area where appropriate professional help is scant continues to support many parents through difficult times. The advice and support of parents further along the road than ourselves is a lifeline and is proving more practical and caring than anything CAMHS have come up with to date. If any other parents out there feel alone and in need of support log onto http://www.furnessnas.org/ and you will find a wonderful community of parents with a wealth of support and a listening ear.

So instead of giving lip service to better service provision for our Autistic children perhaps the NHS should take a leaf out the book of us parents and just get on and do it!

Walking for Autism!

In Training for the Coniston 2Barrow

Well for a while the issue of insomnia disappeared. After three weeks of not sleeping my son had had enough so he stayed awake for twenty four hours, slept at the table whilst we enjoyed a Chinese meal for his brother's birthday and got back into routine. That is until about a week ago.What causes it I don't know- it may be anxiety although he seems well in himself, it may be lack of motivation what I do know now is that he is able to regulate it himself if it all gets to much.
Meanwhile I'm pretty much stuck in the house during the day whilst he sleeps so I've set myself a goal- to walk the Coniston2Barrow walk on May 11th together with his twin sister for the Furness Branch of the National Autistic society.I have been allocated a number 7158 and I have started to train.Now I need to lose weight and I need to keep fit so if you see me puffing and panting up Kirkby Fells with my labrador and border terrier give me a wave I need all the encouragement I can get! If you want to sponsor me even better. you can log into the website here http://www.keswick2barrow.co.uk/  click the button 'sponsor a walker' type in the surname Frost and there we are Yvonne and Evie - no going back now!
With all the sleeping I've been worried about the education side of things but sometimes I wonder why. My son asked me to explain algebra to him the other day. That led to a discussion of the use of 0 as a place number , the use of an abacus in Japan and the introduction of the number system introduced by the arabians. Then  he told me that at various different times St Petersburg has been called Leningrad, Stalingrad and Tsargrad. The first two I knew , the last I did not. He is currently planning to design a computer game based on the Ancient Japanese - so research into the Samuri and Shinto is the order of the day.
And whilst that all goes on his brother and sister have spent the weekend camping in the snow at Frostbite camp. The tents were flooded and they were moved to lodges. the smoke alarms went off at 3.00am, they were prevented by snow from getting to camp on Friday night but despite all that the verdict 'It was 'epic' mum! Bear Ghrylls eat your heart out!

Aspergers and Puberty

At the moment Autism is consuming our lives. Hence the lack of blogging for a little while. Sometimes it does that.You can be going along hunky dory then wham bam , you suddenly hit an unexpected blip! Puberty has been like that. We thought we had it sorted and then suddenly out of nowhere we had agoraphobia, anxiety, lack of eating and now inability to sleep.Actually, that's not quite true. Over the past two weeks my son has fallen asleep at 5.00am and slept until about 4.00pm every day.

On the bright side,he is sleeping on the sofa so we get a better nights sleep, also as I'm home educating  then he doesn't have to go to school in the morning. Other than that there isn't a lot of bright side. I'm stuck at home most days unable to go anywhere and when I do go out there is a battle to wake him up and go out the door so there is little incentive to do so.Offers of bowling and the zoo have both been turned down this week and my son has managed to go out once after much cajoling.
We have decided in the short term to go with the flow. I'm obviously worried about him and that this will spiral due to lack of exercise and going out but I have little faith in those that are supposed to help us in the NHS. A friend with a child with similar sleep problems has just told me that the local CAMHS have no staff. They are ringing people on the waiting list to see if they still need help as many on the list  'have got better' since they were added to the list. At what expense to their mental well being I hate to think. We really are living in the dark ages as far as mental health goes in Cumbria!

Whilst the disgusting lack of appropriate services continue I choose to get my help and advice from local parents, specialist books and the internet. They are the real experts. It's easy to become overwhelmed when several problems hit at once so you have to create a list of priorities and   we have decided to concentrate on sleep.Having made enquiries and done research we have opted to buy  a weighted blanket from sensorydirect.com to see if it helps my son sleep. Some parents swear by them. They are not cheap at over £100 however as my son generally walks round swaddled in a smelly old duvet for comfort anyway there is the chance that it just might work.My mum re-read Luke Jacksons Freaks Geeks and Aspergers syndrome and suddenly the chapter on sleep made sense. Luke was unable to sleep until 5.00am and he had school the next day. My son is the same. It's as if he gets sleepy as soon as it begins to get light.

 I've also ordered an Indian head massage book. My son has always loved having his forehead rubbed and I thought it might help. The trouble is I'm not very patient so I'm having to slow down (it feels like I'm coming to a stop sometimes!)

Any way so that's how it is in our house at the moment! If anyone has any inspiration then please feel free to leave a comment. All suggestions welcome! Meanwhile for any of you in the same boat out there I found this link with several suggestions http://www.myaspergerschild.com/2011/09/insomnia-in-aspergers-teens.html
to help your children sleep and this http://aspergersthealien.blogspot.co.uk/2010/06/insomnia-and-aspergers.html which suggests they might not. In which case I suggest our children learn as they get older to do their shopping at night and find themselves a night shift!

Insomnia and Aspergers

Last night was the best nights sleep in ages and I feel so guilty as I discovered ,when I awoke, that my son had been up all night because ‘he wasn’t tired’. This was his second night without sleep, the previous night he had finally fallen asleep at 5.00am and I was shattered.

Whilst many autistics are known for their insomnia we have never really had a problem with our son. Obviously home education has helped as there is no school bus to catch in the morning for him. I think if he had been at school we would have been scuppered at the first hurdle but broadly speaking, although he has always gone to bed late (normally around 11.00pm) and then read for about 2 hours it has been one of the times of day when he has actually learned loads!

For some reason though he has    suddenly been unable to sleep and we’re not sure why. He doesn’t seem worried or stressed   and he doesn’t seem to have an obsession so I’m not sure if this is a short  term thing or if were in it for the long haul. Puberty has certainly hit hard and we are dealing with a whole load of new problems.

In fact despite my guilt at being asleep whilst   my son whiled away the midnight hours  watching television, in fact he tells me that he watched a historical film called Letters to IWO JIMA and a National Geographic programme about France in addition to playing mine craft on the computer. He then proceeded to sleep until 4.00pm today after falling asleep at 8.00pm.

I’ve googled ‘insomnia and Aspergers’ and found various tips on My Aspergers Child website, like using weighted blankets, drinking chamomile tea before bed, having a lavender bath. It  seems lack of sleep  can be a problem for many children on the spectrum, For us it is simply a new problem to learn from and deal with. Lets just hope we come to grips with it before we all end up living a topsy turvey life style.

My Daughter ate an Ant today!

Life is about experiencing new things and grabbing opportunities! Most days I ask my children what they learned today? It doesn't have to be an academic or a major life skill it can be as small as trying a new food or learning the name of a flower but it reinforces the message that learning isn't confined to school,neither does it need to be boring, it continues throughout life when you look for it!

I have made a point of writing a blog of three things I see each day:                               http://yvonnes-ruralramblings.blogspot.co.uk/2012/11/snow-sprinkles-and-robin-thief.html
It reminds me that there is  beauty in the smallest of things but so many people miss it each day in the 'busyness' of life. Learning is like that, you don't always realise that you are building up expertise in a subject when you learn sporadically, in bits and pieces.But like a jigsaw the pieces gradually fit together as you realise their relevance to one another!

This week has been half term and as I  look back over the week I can see the learning processes taking place. My daughter went to scout camp last weekend and, on her return, she said that she had discovered she liked eggy fried bread! She set to, under supervision, to make her own lunch in the frying pan and topped the bread with baked beans! Her culinary talents didn't stop there.She made apple crumble, simple toffee and chocolate covered apples for halloween. As I watched her cooking I realised how confident she was becoming and that she would soon be able to cook for herself because she was being allowed freedom of the kitchen.
My older son is already a proficient cook and  made hot dogs for his Rock band when they came round to practice this week, even washed up afterwards. All I need to teach him now is how to wash and iron his own clothes!

My autistic son meanwhile enjoyed the company of his siblings and surprised me by going out on several occasions during the week.Not to anywhere special  just to Morrisons cafe, Macdonalds and into town but for him with his sensory issues it was an enormous feat. He even managed to go round the village trick or treating on halloween. He put the lack of panic attacks down to the fact that he was supported by his sister or friend on each occasion. it was lovely to see how proud he was! One of our purchases in town was The Wimpy kid book 'The ugly Truth'. As with the horrible history set of books the layout and style appeals to his visual learning style and he has devoured the series as he has received it.

And as for the Ant, well that came at scouts the other evening- my daughter faced a forfeit! She ate an ant! The verdict- it tasted much better than the carrot as it was crispy and salted!

Learning as we go!

We  had a breakthrough this week. My son suffers panic attacks which have become more severe since he reached puberty. Trips out have become rarer and rarer.My son started to panic if i left the house to such an extent that I have to work my trips round my husband, Shopping trips to the supermarket with my son were abandoned months ago when he began to suffer meltdowns once in the supermarket.E ven getting out the house to go somewhere he wants to go can take ages just getting out the door he is so anxious.
Yesterday however he asked if he could come with us to Morrisons and eat in the cafe! Simply asking to come made me take a sharp intake of breath.I spoke to my daughter and pre-warned her that he might not make it and we planned a get out clause so he wouldn't feel a failure. I fully expected not to make it out the door but to my surprise  at the arranged time he bounced down the stairs fully dressed, donned his ear defenders and walked to the car never once looking up at the sky for noisy aeroplanes. Once in the car , off came the ear defenders, a sign that he felt O.K and he chatted animatedly with his sister about what he would eat.
We had purposefully chosen to go at 2.00pm on the assumption it would be quieter. Despite this there was a ten minute wait. My son opted to choose his meals from the menu outside the door then he and my daughter went to the far corner of the cafe where it was quietest to wait whilst I ordered.
They were chatting happily when I came to sit down and as my daughter disappeared to the ladies my son said that he felt far happier because his sister was there to support him.
He ate his meal with gusto and then asked the time . It was 2.30. His lip started to wobble and when I asked him what the problem was he said that we had planned to buy a halloween costume but he had to get home for three as he had arranged to play on-line with his friend.
To maintain his sense of success I  abandoned our trip for halloween outfits and said I would do that the next day. I suggested that he tried to calm himself by reading a book on the way home and that is just what he did! He was so pleased at his achievement and realisation dawned that he wants to do so many things that he feels unable to do and that my job is to teese life skills into him slowly and carefully .

Political Activist in the making!

Consultations have taken place to store Nuclear waste underground.

I've just got back from a photo shoot with our National Autistic society who are campaigning to improve services within the NHS locally for our  children. It started with a newspaper article in our regional paper. We read the story of an eighteen year old boy with Aspergers syndrome who had comitted suicide. Parents responded immediately to the news. It is common knowledge within the Autistic community that Mental Health services in this area are letting Autistic children and adults down. Many of us have experienced it and our hearts went out to the mother of this poor boy. Comments were posted thick and fast and our local newspaper got in touch as they wanted to do an article to raise awareness.
http://www.nwemail.co.uk/news/grieving-barrow-mum-calls-for-syndrome-awareness-1.1003586?referrerPath=home/2.3320

We are all mothers of autistic children. Many are already battling  for better educational provision, respite , NHS services- no mean feat when you are caring for a child with difficulties. Nevertheless we want the best for our children and felt strongly enough to have our say.
Since starting to home educate I've found myself  slowly becoming more involved with political issues. The government has threatened my right to Home educate, the rights of my son to Disability living allowance, even my right to decide whether my childrens' education would be enhanced by removing them from school during term time to explore our beautiful country. Issues like taking finger prints for lunch cards at school or deciding against vaccinations are queried by the authorities as though we have lost the capacity to think for ourselves.In a way I think we have,our education system actively encourages it. It's far easier when everyone submits.
 Prior to home educating I was lethargic. I did my bit and I voted, but then I left it to the politicians to do their job. The trouble is that my experience home educating showed me that their policies on education in particular were wrong. It exposed them as not knowing what they were doing and I started to query other issues. I do care about how our laws affect my family and community and I've realised that I can have an impact.
 Home educating in an autonomous way leads to research on things that impact on our lives.We researched Biomass plants when plans were unveiled to build a biomass plant near us . We reacted with horror at the news that consultations were taking place about storing  nuclear waste over the estuary less than a mile away We have discussed referendums to change the political system  and voted .Even my son at the age of 12 has expressed the view that too much money is spent on the defence budget.
 Home educated kids have more time to involve themselves in the real world. The government can't  pull the wool over their eyes.They have the time and inclination to ask questions and to campaign about what matters to them and to see that they can have an effect.In fact maybe in the future my son will follow in the footsteps of Winston Churchill, Abraham Lincoln  or George Washington who were themselves home educated.