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Charlie’s Acute Onset of Catatonia and Psychosis

Staring this blog and openly talking about what we have gone through was not an easy decision. I’ve partly done this as there is very little available on the internet regarding this condition. Our trauma would have been lessened if we’d been able to access help sooner, or achieved a diagnosis when we sought emergency medical help. My aim is not to scare monger parents of children with autism. What Charlie has suffered is rare. I hope that the detail contained in this blog will prove useful to healthcare professionals should they be presented with anyone suffering with these symptoms. This is not an easy read… I make no apology for that. The attached videos are distressing to see, especially for anyone who knows Charlie and knows how abnormal a behaviour this is for him. 

This blog explains what happened in the week prior to Charlie being diagnosed with CATATONIA and PSYCHOSIS.

Saturday the 14th February, Valentine’s Day, is memorable for all the wrong reasons. I can’t really recall why I felt the need to make sure we got out the house and fill the day with distractions. Maybe mothers instinct, maybe a sixth sense, I don’t know, but for what ever reason I remember thinking “Charlie’s not right” and believed that keeping him occupied would deter whatever it was that was niggling me about him.

In the week leading up to this I had decorated Charlie’s bedroom… A job that was long overdue. A year previously had been another challenging time which saw Charlie become angry and aggressive. Holes in this wall and destruction of belongings was a result of this. We were in no hurry to put right the damage… The chances were that it would reoccur and be a waste of time so we waited, about a year. Over the last 6 months we had seen a steady but significant improvement in Charlie’s behaviour. He was more content, sociable even. Christmas had been the best Christmas ever, with Charlie taking part in the festivities and we saw the innocent joy on his face on Christmas morning for the first time in his life. Life was good… And I even started to dare myself to dream and imagine how the future might look.

So with his newly decorated room needing a few finishing touches (he’d chosen to decorate it like the premier inn… One of his pre-occupations) we headed off to the retail park.

It was here in the middle of Dunhelm Mill that the bizarre behaviour first became apparent. He would freeze, stand still on his tip toes with his eyes fixed and vacant for a couple of minutes. In that time he was unresponsive to any encouragement to move him or engage him. He would end the episode with a strange and sudden jump forward and then carry on as normal for a while before repeating this behaviour again and again. Now, we’re used to seeing bizarre and random behaviours from Charlie, but I knew this was more than just another autistic behaviour. Later that day we went to my parents for dinner. His behaviour continued and he became more vacant, he’d begun hand flapping, so much so that he couldn’t even feed himself. His grandparents were equally concerned. This was not something we had seen before or had any explanation for. I decided that if he was still like it on Monday then I would seek help… Something that I now realise is easier said than done.

On the Monday (it was half term week) I called his Community Paediatrician. She was on annual leave, I explained to her secretary that I was really worried, so she organised an appointment… The first available appointment being in April. If I wanted to get him seen sooner, she suggested I see my GP. So I made an appointment to see my GP that afternoon. My GP advised that he was best dealt with by his paediatrician… And he wrote to inform her… But wasn’t able to offer any other advice or immediate help. In my desperation I then phoned our local Autism charities helpline. I explained the behaviours to them and they suggested that it sounded like he was stressed and to “go back to basics” with him, using tools such as a social story or picture timetable to help reduce his anxiety. But by this time Charlie was almost completely unresponsive for most of the time. He would spend hours lying flat on his back with his eyes fixed and staring, one hand flapping and breathing rapidly, pale and clammy. He wasn’t even acknowledging my voice, let alone looking and understanding timetables.

We had been due to visit my sister and Charlie’s cousins in Cambridge that week as it was the half term holiday. Charlie had been really looking forward to going, so with no offers of professional help or intervention at home I boldly decided to go anyway, naively still believing that this may be something that he would just snap out of, and that the distraction and change of scenery would be of benefit.

Sadly things only got worse. By the Thursday evening Charlie had shut down completely, both physically and mentally. He was static and rigid, holding bizarre unsustainable positions for periods of up to 7 hours. When he did move from a fixed position it was to change to another position and again held for hours. At one point Charlie blinked and looked at me saying “hi mum, I’m back now” I asked him where he had been and he said “my brain is twitching” 2 seconds later he was gone again. When I finally managed to manoeuvre him into bed, he lay wide-eyed and rigid with his arm extended in the air until the morning. Me and my sister trawled the Internet for an explanation. We considered seizures, brain tumour or infection and catatonia.

On Friday morning we took him to A and E. After 5 hours of being reviewed by the paediatric doctors and a neurologist he was discharged home. He was medically fit and well. His symptoms were not indicative of seizures and he had no signs of infection. They asked what I thought it might be and they dismissed every theory, either through medical  elimination or by saying it was so rare it was not possible. They discharged him home advising us that he was displaying “autistic behaviours” and that we should follow-up with our community paediatrician as planned.

We returned home on the Saturday , a whole week after the initial symptoms. I had kept a log of events over the week so typed them up and emailed them to everyone who I thought may be able to help… School, GP, social services and paediatrician. I simply can’t explain how we were feeling at this point. I was exhausted and felt sick to my stomach. I felt like I was stood at the site of a car crash holding my broken child, screaming for help but no one was bothered. I was living a nightmare.

Charlie, unbelievably, began to deteriorate even further over the next 24 hours. He became incontinent. He’d started punching himself in the head repeatedly, in an attempt to make the twitching stop. He’d barely slept or ate for a week. And I was at a loss of where to turn.

I started making phone calls on the Monday morning. Social services had been in contact with the Child Health and Disability team, in response to my email. They needed to assess Charlie but believed from my description that there was a possibility that he was suffering from seizures and were not prepared to see him until this has been dismissed. Even though he had seen a Neurologist in Cambridge they insisted that he had an EEG to eliminate this. After phoning my GP and waiting 2 hours and no call back I decided again in desperation to sit it out in our local A and E. It was a mammoth 5 hours before we even got to see a doctor. Despite there being nothing he could do, he took pity on us and arranged for Charlie to be assessed in the children’s ward the following day.

That night Charlie’s attempt to deal with his “twitching” progressed from punching himself in the head, to hitting his head against the tiled bathroom wall. Again we had another sleepless night, entranced, incontinent, self harming and hitting out at us when we tried to intervene.

The following day was spent on the children’s ward. Again he underwent all the routine medical checks including an eeg. As before and as expected, all the results came back as normal. The doctor again arranged for Charlie to be discharged home and for a follow-up appointment to be made with the child disability team to assess him. There was nothing they could do for him. Go home and await an appointment or if I don’t believe I can keep him safe, then they will contact social care for emergency intervention. I couldn’t believe this was my only option. Take home my child, who by now was behaving completely psychotic, out of control, and a danger to both himself and us or agree to have him taken away from me. Emotionally and physically exhausted and sick with fear that I had to spend another night helplessly watching him smash his own head against a wall, I agreed to them informing social care that I was unable to cope.

I’m no ‘Earth mother’ and I’m not the ‘super mum’ that people make me out to be. Being a mum to any child, no matter what, is not easy. There’s no training, no handbook, no magic wand. But, of course, the last thing I really wanted was for Charlie to be taken from me. I was desperate. I needed them to fix him. I wanted my Charlie back desperately and didn’t know how to express this in a world of medical people who seemed detached from any emotion and only able to interpret results and who failed to see that something was very wrong. It took me breaking down for them to finally look up from their notes and actually listen and understand and take ownership. Phone calls were made, and as a result Charlie was prescribed an anti-psychotic drug and an assessment with a consultant psychiatrist was made for the next morning. The relief was enormous. My parents had arrived at the hospital to support me as Gary was home taking care of the rest of the family. Exhausted but relieved, we spent the night at my parents house. My mum and dad took care of Charlie over night so that I could sleep… The first time in a week. The medication took effect within a couple of hours and Charlie eventually slept too.

When time allows I will continue this blog with details of Charlie’s diagnosis, the support and help we’ve received, how this has affected our family and what the future might hold.

 

 

 

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Brotherly love

Bring the parent of a child with special needs, although difficult, is rewarding in so many ways. A mother does not choose to have a child that is different or challenging but with the overwhelming instinct to love and protect I find it easy to say that I wouldn’t change Charlie for the world.

Charlie is ‘easy’ to love. Yes, sometimes I feel incredibly sad for him and there have been times that I think I have grieved for the person that he could have been but I love Charlie like you love a cheeky 2 year old. Every achievement, no matter how small, is worth celebrating. Every inch of his naughty personality, endearing, and even every melt down, justifiable and sympathetically dealt with.

Likewise, Harry and May never asked to have a brother like Charlie. I know they both love him in much the same way as us, fiercely protective of him and annoyed with him in the normal sibling ways. But I can’t help but feel, whilst being a brother to Charlie has helped shaped the people they have grown to be, that they have paid a big price for it too…

Families evolve and grow. Which we have, but not in the way you would have expected. Harry has grown up with Gary – luckily for them both enjoying the same interests, which has meant much of Gary’s free time has been with Harry. Sadly these have been activities that just aren’t suitable for Charlie so that has meant much of my free time has been caring for him. In turn that has meant May has missed out on both of our time or attention. For someone who’s personality screams ‘look at me!’ its been extremely difficult for her to deal with.

You often hear parents celebrating their childs successes or declaring how proud they are. Its not so usual to hear that they are being driven round the bend, grey haired or ready to walk… We only ever want to share the good stuff…

We’ve had a lovely week last week. My sisters and brother and their children have all spent time in the sun at the beach hut. It was the perfect way to recover from being I’ll! Charlie was in his element on the beach. He showed independence by going to the shop each morning on his own to buy a bottle of Pepsi and spent hours (literally) sat in a hole on the shoreline.

May took on the role of childminder to her young cousins and everyone was sad to see the week come to an end.

I can’t believe how quick the summer holidays are going – I think I say this every year! Oh well… It’ll soon be Christmas!

Train days and holidays

So we are into the summer holidays… always a time of year that I look forward to although with a little apprehension.

Who doesn’t love the thought of time off work, the warmth of sunny days and for me an excuse to celebrate my birthday in the sun.

6 weeks to entertain Charlie can be a tall order. Perhaps its a blessing in disguise that recently he is enjoying entertaining himself… although it worries me that he chooses to spend about 90% of the day in his own company in his bedroom. We are graced with his presence at eating times, however, we are now in a routine of being banished from the dining room – Charlie sits at the head of the family dining table, with the table perfectly laid for 1! The rest of us are banished to eat on our laps in the lounge… sometimes I think Charlie is king of this kingdom and we are the mere mortals employed only to serve!

Holiday activities that are suitable for Charlie are few and far between. Yes there are a few things set up but Charlie declines to engage with most of them. With a little gentle persuasion he might go to the play association but other activities like sports, art or entertainment is a no no for Charlie. Its sad because I know he would enjoy some of them if he gave it a chance – but anything new is frightening for Charlie and therefore, better off avoided. His standard reply to my suggestions are a very polite ‘no thank you’. If I persevere I would no longer get such a polite response!

Charlie’s personal plan for the holidays is to visit as many railway lines/bridges/stations as possible. It’s amazing how his passion for trains, which started with Thomas, has continued to grow. Last week we visited a dear friend in Weymouth. Of course this was an opportunity to travel on Southwest trains… Charlie gave a running commentary along the whole route. I had to chuckle to myself… I could see people in our carriage trying to pretend not to look at the landmarks he was pointing out but were just too curious… especially when he got very excited at the points at Warehem where you would change to go to Swanage (and he then went on to list all the stations from Norden to Swanage) and the points at Hamworthy where the old import/export goods would travel to the docks at Poole… I think he could spend literally all day stood on a bridge or platform just watching and waiting… We did a lovely walk from Surrey Road along the Bourne river to Coy Pond – just so we could stand under the old viaduct at Branksome!

Sticking to my ‘glass half full’ outlook has been a little challenging this week… I’m never ill. But this week what started as a sore throat and progressed to feeling like I was swallowing razor blades has now become an almost complete loss of voice! A rare trip to my GP confirmed it is tonsillitis and has signed me off work for a week… Not a great start to my annual leave. So the ‘glass half full’ bit is that I will get some holiday hours back and I can sit and veg at home and let Charlie enjoy his own company for as long as he likes!

Pockets of life

Ive never been one to shy away from a challenge. I can’t imagine what life would be like if I wasn’t juggling at least a couple of balls! I’m a firm believer in the concept of ‘the pockets of life’ by this I mean  that one shouldn’t consider all the important things in their life and  decide which is more important than the next, but give 100% to the pocket that you are in at the time.
So when I go off to work, I become Sara who cares for women and babies (and midwives!) And when I am at home I am Sara the mum and wife and cleaner and cook etc etc and carer for Charlie.
I struggle with the idea that I can’t give 100% all of the time and be the best I can be. Im an all or nothing kind of girl. Maybe it’s because I’m scared of failure or I love the feeling of success a bit too much!
As time goes by we expect our lives to change and grow as the people around us change and grow. But life with Charlie is similar to having an eternal toddler.  The things you dream of enjoying together as a family when your kids get older have just never happened. Meals out. Holidays. Independence.
Last week I took up the challenge of Charlie having his friend for tea. He was very excited in the days leading up to this and even spent the night before tidying his room. On the day, I picked them up from school and when we got  home Charlie shot to his bedroom and refused his friend entry… conscious not to distress his friend I tried to coax Charlie into letting him in. But Charlie was his usual anxious self and decided to take himself out of the situation by leaving the house without warning.  I spent 30 minutes looking for him, with his friend in tow.  We were on our 4 th time around the block when we spotted him. Its hard to stay focused when  your hearts going like the clappers, your imagination is running wild and your processing your options and formulating a plan whilst maintaining a cool exterior.  The experience isn’t one I want to repeat in a hurry.
Sadly the friend got taken home so the ‘friend for tea’ didn’t happen. 
The best thing about valuing my ‘pockets’ is that I can completely escape the stresses of life and use opportunities, like time with my friends or weekends away to recharge my batteries, put myself first, feed the soul and get back to life with renewed vigor and optimism.
So girls, I am indeed looking forward to this weekend – I fully intend to stay in the hot tub until I’m wrinkled like a prune, drink a few more pimms than is healthy for me and show off my dancing talents at our bollywood class! ! Thank you girls for inviting me and thank you Gary for holding the fort. I owe you one! Xx

Beautiful babies

When I was a child my dad used to say “you’ll be rewarded in heaven” whenever I’d done something worthy of recognition. When I became a mum I thought that I must have been really deserving of that reward as God had decided that I didn’t need to wait until then – He’d let me have my reward early. Each of my 3 children are beautiful. Harry is sensitive and thoughtful of others with brown eyes and was my blonde baby. May is confident and strong headed with bright blue eyes and curly jet black hair and Charlie is Charlie with his smokey grey eyes and brown hair. Each one beautiful and each one unique.
Charlie was the cutest of babies! He’s very easy to love in the same way that you love a baby. Partly because he will always be the baby of the family and partly because I’m very aware of the fact that the world, to him, must be like seeing through the eyes of a much younger child.
It’s difficult to compare Charlie to other childrens ages – in education terms he’s working towards a similar curriculum  of a 6 year old, but in communication terms his 6 year old cousins have leapt ahead and left him behind. Physically he’s a regular 13 year old – hormones and all! I can’t say its any fun and has added to Charlie’s problems, I won’t go into detail but i’m sure you can image the challenges this has brought – but we are coping, I think…
Charlie went for his brace fitting this week – we came home minus a brace! He has no concern for his personal appearance, so this is no motivation for him to get a brace, but his protruding top row is so severe he is unable to even close his lips and with a gap of almost an inch in his bite, its just not good for his oral health. He’s been so good at his orthodontic appointments up until now I dared to hope that it would all go smoothly.  But after very politely saying “no thank you, I don’t want braces” he got distressed, leapt off the dentists chair and stood facing the corner of the room. A little gentle persuasion saw him bolt from the surgery all together and disappear down the road. He found solace in an ants nest at the kerb of the road.
I think Charlie has made a friend at school. He’s mentioned another boys name a couple of times and today came home from school with a sketch of a ‘my little pony’ (a current obsession of Charlie’s) he says his friend did it for him. I think I will send a note via school to his friends parents and maybe we can arrange some ‘play days’ this will be a first – I’m actually  quite excited for Charlie!
Thought I’d leave you with a picture of my beautiful little boy – aged 1

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Somewhere ‘on’ the rainbow

Having a child with autism has been a rollercoaster of a ride! When he was diagnosed just before his 3rd birthday, it came as a relief. Nobody wants to have a child who is autistic, but it was like a weight off our shoulders to have an explanation and a label. It meant that we could start to access support for Charlie, that without a diagnosis we would not have got.
I consider ourselves lucky as far as this goes… I often speak to other parents who know their child has difficulties to some degree but have to fight to get any sort of support for them.
Charlie is classically autistic. His official diagnosis is autistic spectrum disorder or ASD. It took me a while to actually say ‘he’s autistic’ somehow it felt less dramatic just to say he was on the spectrum!
I love that word ‘spectrum’ I visualise a rainbow with Charlie sat about a third of the way along its bow. I realise that things could be a whole lot worse for Charlie, that he might have never developed the ability to speak or communicate, that he might not have had that wicked personality that will see him rolling and crying with laughter at ‘you’ve been framed’ or the sensitive and caring little worrier that I see when he is around his young cousins or the loving little boy who links my arm when walking. And for that I thank God.
From the moment he was diagnosed the support kicked in. Charlie attended the child development centre at Poole hospital. Here he was in a class with 3 other children like him. He had play therapy with the lovely Mary, speech and language therapy and paediatrician input. The parents sit in an adjacent room with a one way mirror so we can observe the children. He got 1:1 support at nursery and we had a portage worker who came to the house once a week to work on his communication skills. During this preschool year we got him statemented and plans in place for his transition into mainstream school.
I’ve never regretted that we took this path… Yes with hindsight it was not the right place for Charlie, but I would have always wondered ‘what if’ if I hadn’t have tried. They adapted his timetable and he had full time support and, for a year and a half, him and Mrs Morley had a lovely time together! But it wasn’t ‘inclusion’ and Charlie failed to meet any of his targets. So with a heavy heart I organised his transfer from St Marys to Winchelsea Special School. Its fair to say that I was really unsure if this was the right place for Charlie. At the time the future of winchelsea was under review, with a temporary head in post and faced with possible merger. The last thing I wanted was more upheaval and the anxiety that goes with change. I considered and applied for other schools outside of Poole, but was unsuccessful due to catchments and already being oversubscribed, so winchelsea it was. I’m a firm believer in fate – it it turned out that  Charlie thrived here… And the future of winchelsea was to be a positive one. It gained specialist status for children with autism and has a strong leadership team, excellent teachers – current and up to date on all the best possible teaching tools for children like Charlie. They are well supported by both their PTA and board of governors. They have sensory rooms, occupational therapy and salt all on site.

Along our journey we have stumbled across benefits and entitlements. Some we’ve heard other parents mention just in conversation, others I’ve found through hours of trawling the internet and occasionally things get sent home from school. Nothing is handed to you on a plate – no one says ‘your child is disabled – this is what you are entitled to’ I remember when I discovered that we should be claiming disability living allowance. Surely we’re not entitled to benefits? We both work and always have done – this was a completely alien concept to us! Why would I need to be paid because my child is autistic? I was even slightly offended at the idea! However claiming this benefit is the key to accessing opportunities and support – its the certificate, if you like, that says – I’m disabled. And, of course, it has helped fund Charlie’s obsessions and casualties!

I plan to take up this challenge one day… Its not gonna be easy but I can’t believe no one has done it. A document or website that says – your child is disabled – this is what you get!

Happy birthday?

Well the birthday weekend has been and gone. I would like to say that all the anxiety is gone, happy memories have been formed and all was well… Of course that wasn’t quite the case. I cried on Charlie’s birthday – sometimes I think that I must carry his sadness as well as my own. I wanted him to wake up and be excited, see the joy on his face opening his presents and feel the normal stresses of a house full of teenagers running a mock and high on Pepsi!
Instead he was angry and frustrated – still unable to grasp that he’d missed his chance of a trip to London.
He refused all offers of presents and announced that it was not his birthday. I don’t normally get upset – I think its generally best to just shrug it off and carry on, but I felt an overwhelming since of grief, loss of the child that he could have been, and once I’d let the tears well up I had no choice but to let them fall.
Charlie never understood birthdays or Christmas the same as other children until a few years ago. The excited anticipation was absent so its even more important to me that now that he has grown to understand these events, that we make them extra special – an attempt to make up for those lost years, but in reality his understanding isn’t normal – and it just makes the disappointment an even bigger fall.
My good friend had just celebrated her daughters 18th birthday the day before, all the stresses of party planning, the usual teenage angsts, and the joy of celebration and ultimately the loving and grateful young person – a privledge that will probably never be with Charlie – a stark reminder that all this sacrifice and burden is indeed thankless. That morning I felt isolated and alone – did anyone really understand. I felt drained of the constant repitition of “we going to london today” “step 1 – dad comes home, step 2 – we go to london, step 3 – we stay at premier inn” over and over and over again.
Of course, I will never stop trying. I will persevere, but sometimes I feel like I’m on a round about, dizzy and sick and I want it to stop and get off, even if just for a while.
So the day continued as ‘normal’ as possible – family came and no one was allowed to mention ‘birthday’ the only present he accepted was a lime jelly and a packet of jelly beans. We had a lovely family BBQ in the garden but Charlie remained in his bedroom for the best of it. No presents, no cake or candles or renditions of ‘happy birthday to you…’
All any parent really wants is for their child to be happy. It really doesn’t matter if they dont have an amazing talent, do bad in their exams or have to fight whatever challenges life might throw at them as long as they are happy. As time passes at an alarming rate, its times like Charlie’s birthday that i think about what his future holds. I’ve started to look at provisions for him in his adult life. After all in just 5 years from now he will indeed be a adult – uncomprehendable really. I have been both horrified and delighted at the options available and whilst those good options fill me with hope and relief, they are far from guaranteed and I  know that I will have to accept that its not going to be an easy ride securing a happy future for him.

So just for the record ‘happy birthday Charlie choo choo! Best wishes and many happy returns – with all my love Mummy xxx
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