Is it ever ok to challenge your doctor ?

I am back again.  Apologies to those of you that have missed these blogs, however I wasn’t sure that you would still be interested in the ramblings of a middle aged woman.  It would appear though from the requests that I have received recently, that you are out there waiting with bated breath (not quite but hey it makes me feel better).

So my question for this blog, ‘Is it ever right to challenge your doctor?’ was prompted following a recent appointment that my daughter attended with our local GP.  For those of you living with autism and/or anxiety I do not need to tell you about the difficulties that are faced in even making an appointment.  The process of making the phone call, the wait for the doctor to return your call, I mean the wait is a horrendous cause of additional anxiety and then there are the logistics of the time of day of the appointment.  Will I be too tired as it is near the end of the day ? Will I spend more time worrying about it because it is at the end of the day ? The receptionist has no idea that the end of the day versus the beginning of the day is even an issue.

So let’s start with the cause for the appointment and see what you think to this experience.  

My daughter, Bonnie, is approaching 16 and has for sometime now had an issue with the top of her spine/the base of her neck.  There is definitely some sort of curvature which has been causing her some back pain down the length of her spine and some physical appearance issues have also been playing heavily on her mind.  So she had asked me to book an appointment with her GP.

The doctor initially spoke to me on the phone and agreed that it was important to offer Bonnie reassurance and check it out.  This all sounded very promising and although I personally did not feel that there was an issue with her back, it is not my place to offer this diagnosis as I am not a medical professional and it is important for anyone to get a back problem checked out. The doctor arranged a face to face appointment, which once again was at the end of the day.

After having waited a week for the phone call appointment Bonnie then had to wait a further five days for the face to face.  

Five days of uncertainty, anxiety and constant googling. Now google, like other search engines can be amazing but it can also be our downfall, especially when time is on your hands.  It creates a huge ball of angst that grows bigger and bigger and is fuelled further by more searches.  The outcome according to Bonnie was a buffalo hump.  

The day of the appointment arrived and the covid protocols for our surgery meant that we had to ring a bell where a receptionist would come and greet us and take us to the, normally packed waiting room, to wait for the doctor to buzz through for us.  You are also required to wear a mask.  Bonnie wore her sunflower lanyard as although she had at times worn a mask she found it can be very difficult if she has raised anxiety and causes her issues with her breathing and to focus on what she wants to say.

We were actually met at the door by the receptionist who was already dealing with a patient who was clearly trying to complete one of those dreaded disability forms that the government feels we should keep completing.  Those forms are not easy and are clearly difficult to complete without help and so this patient was needing assistance.  Please do not start me on this topic today, in fact I may blog about it tomorrow.  It’s a big area that needs addressing… 

Sorry I digressed. Anyway so the receptionist waves us in and we take a seat.  There are normally about 30 seats in the waiting room and they are normally all full.  Not today, today we have 5 seats in the room and only one was occupied.  I get it, it’s the covid world that we live in.  The only other person to occupy a seat was an elderly lady who when she stood up for her appointment had clearly been sitting down for too long in a hot waiting room, with a mask on, and stumbled into the wall.  I quickly asked if she was ok, she replied that she was fine.  The bunch of receptionists however, did not even break up from their screens to assess the situation.  Far too busy obviously.

The receptionists themselves were rude, and you could over hear them talking to patients on the phone with little compassion and clearly feeling incapable of addressing their patients needs. I am unsure if the reduced number of patients throughout lockdowns has almost given them an excuse to be rude and not be able to meet the demands.  

Fifteen mins after when our appointment should have been Bonnie’s anxiety was rising.  She was sat on a chair two metres away from me, as per protocol and starting to loose it. She was getting agitated and her hands kept moving, her breathing was changing and she needed to get on with this appointment.

I casually called out to the lady that let us in, asking her if she maybe forgot to book us in.  It turns out she had.  So great here we go.  We are now fifteen mins late for our appointment, Bonnie is as anxious as can be and we are about to meet a new doctor.

“My apologies Doctor, it would appear that they forgot to check us in “ I sweetly sang as a way of trying to get the appointment back on track.  I’m not sure that this was received as I hoped it would be as I still got the impression that the doctor held us accountable for the lateness.

She asked Bonnie why she was there and Bonnie explained.  Bonnie was brilliant and I was super proud of her, she was articulate and concise, although she never made eye contact once.

So here sat in front of her is a 16 year old autistic girl.  Even if she had not read Bonnie’s notes the sunflower lanyard was a huge give away along with the non existent eye contact. I kept thinking this is it, she can clearly see that Bonnie needs precise, factual information and also some time and understanding.  Well, that went straight out the window.  “Show me “ barks the doctor.  So Bonnie, who was sat down showed her the lump.  “Oh that’s fine, it’s just your spine, what that little bit there? That’s the same as mine and your mums”.  (Which by the way, it is not the same as mine, Bonnie’s is definitely more of a lump).  “No” said Bonnie, “It isn’t.  Maybe if I stand up you can see it better”. So she stood up and showed her.  “No, it’s definitely your spine its the C7, ” followed by “You don’t seem happy with my response “.  “Well, no I am not happy” replied Bonnie.  “I went to medical school for 6 years to know what I am talking about” came the reply.

I didn’t say anything and do you want to know why ?  I didn’t say anything because it did not surprise me.  Any help, understanding, support that Bonnie needs has only ever come from her family.  All the media exposure to mental health, all the promises from people and the government that they will support others with mental health always falls flat on the floor.  The biggest disgrace is that this was coming from a medical professional.  I think she felt that she had redeemed herself when she say to Bonnie “I will write it down on a post it note and you can google it”.  The post it not said C7, spine.  I despair.   

So I discussed with Bonnie how I felt that it should have been addressed, with the doctor taking the time to fully check the length of her spine,  perhaps asking her to touch her toes, to ask her about her posture, to establish any history of back pain within the family, to ask her if her bra has been checked to see that it is the right size and to basically listen to Bonnie’s concerns, with compassion and empathy.  It’s a joke really that people with High Functioning Autism are perceived as having no empathy because rarely are they shown empathy.

Bonnie’s reply was “Mum, it does not matter if I had that lanyard on, it doesn’t matter that I am autistic, that doctor should have addressed the needs of the patient correctly no matter who they were”.

Once again she is right.  So to the doctor who studied 6 years to achieve her medical degree, congratulations but you cannot presume that a 16 year old girl who does not have a degree is lesser than you in any way.  Bonnie has a very wise approach to life, she is smarter in ways that you can imagine and will continue to out shine you in ways that you cannot learn in any degree.  

  • Any spelling mistakes, punctuation and grammatical errors are all my own, they are not the purpose of this blog.  The purpose is to raise awareness of autism.
  • This photo does have a filter on it. In fact in the un-cropped version I have a pigeon on my head.

The bully meets his match?

Well, the summer has come and gone and whilst I had every intention of blogging I found myself just enjoying the long summer days and before I knew it, poof, the summer was gone.

It has been an interesting summer, I don’t want to dwell on COVID 19 in fact let’s skip that subject as much as possible. This summer resulted in my eldest daughter getting her A Level results, again lets try and skip the politics of that area, let’s just say it was a very stressful time and I’m glad it is over. The outcome though was amazing and she is off this Saturday to start her Law degree at Bristol University, I am hugely proud of her achievements and whilst I will miss her immensely I am just bursting to the seams with excitement for her.

Bonnie has had an intense summer, the continuation of being in such close proximity to the 5 members of our family has not been without its issues and her anxiety levels have been incredibly high. It is her OCD that has been very distressing to watch and as a result of appointments with her therapist a decision was made to try and tackle the OCD head on.

Now Bonnie and I have read every book going on OCD, we have watched every programme and we have scoured every website, and we get it. We understand the whole concept of OCD and how that bully really should just get lost and leave her alone, and yet it is still there every night-time filtering away through her body until she goes and picks up the object(s) from the bathroom (predominately toilet rolls and towels) finally allowing her to sleep. So the decision to tackle the bully head on resulted in much the same way as if you tackled a bully in the playground and it fought back. Now, normally I would encourage Bonnie to continue to fight the bully but at this moment in time it was too strong because I felt that we were giving it too much power. Again much like the bully in the playground we have been feeding its ego and boosting it up to seem something big and important, in actually fact it is just weak and feeding off of someone else’s pain. So we have tried another tact, ignore it. Try as best as you can to distract yourself and not let it feel so powerful. Find something else in your life that can feel an accomplishment that the bully cannot take away from you. It doesn’t mean that it goes away but what it does mean is that you spend a little less of the time worrying about it.

So Bonnie has decided to invest more time in her studies, she would be year 11 at school but she has been homeschooled since year 6. This is amazing for me, do you know how long I have waited for her to come to me and for her to suggest that she focuses on her exams… well it’s a long time. Don’t get me wrong we have completed many online courses and art programmes and bought lots of books but I am talking about a clear path to sitting GCSE’s.

Some of her decision to do this was brought about by the eldest daughter achieving her exams and going off to Uni but a lot of it was as the result of time and trying to beat the bully. Since she was 10 years old and left school I have encouraged her to make sure that she was in the right place mentally and physically for life, and that her exams could wait. It was a difficult decision and met with objection by some family members and some friends who questioned (continually) my approach and who have really caused me anxiety and stress. They also left me wondering if I had got it right, was I creating further issues and distress for Bonnie further down the line ? Well it’s taken me a while but to all those people I now really feel as though I can say Nah Nah Nah Nah… I finally feel able to have the confidence in myself again and in fact I should not have doubted myself.

The teaching aspect is coming from tutors. I am truly grateful to have found a wonderful maths tutor who is kind and considerate and who constantly tells Bonnie how wonderful she is. How amazing is that !! I am capable of walking Bonnie through the concept of maths but at the same time I am not, you see I have the ability but I am not very good at breaking things down and actually teaching them. So the introduction of Anne is a life saver and to be frank I do not feel that I have failed, I feel as though I have succeeded in what was the initial plan. It’s early days but hopefully 2 years down the line Bonnie will have the results required to take her to the next step of her life, be that further education or a job, lets wait and see.

As you can tell from my spelling and grammar the English tutor is also not me. I may well have that old A level result tucked away in my portfolio but my abilities here to teach this area are severally lacking. A friend I have known for over 40 years, since we were 4 years old, has very kindly picked up this honour. Her credentials are impressive and for want of wanting to keep her down off the high pedestal that she should be on I shall not list them, but rest assured she is an excellent teacher and should never ever doubt her ability to encourage and enthuse others. She has an understanding of Bonnie’s situation and of the fact that Bonnie gets extremely tired from the sensory issues and so she is able to work with that in mind. The best thing of all is that she can let Bonnie choose texts that she would like to work with, this is brilliant because although Bonnie may understand MacBeth she chooses not to study it because it is set in a colder climate and she doesn’t like the cold. She also allows Bonnie the ability to debate areas which obviously could not happen in the same way with a class of 30 children.

So I am finally starting to see a clear path into the future. It looks promising and hopeful and full of positivity and whilst it will take some time to tackle that bully at least he is not getting the same head space that he once was. In fact bully I think it is about time you go and do one! If only it was that easy.

At the moment everyone is ‘home schooling’.

I have three children and they are all educated in very different ways.

My eldest daughter Scarlett has, up until lockdown, been attending a local college where she has been studying for her A Levels. Since college closed she has been advised that she will not be required to participate in any more work and that she will not be required to sit exams in the summer. The Government website for the Department of Education has provided guidelines for how they will provide pupils with their grades and this will be through assessment of work throughout the course from her teachers and then the teachers will be asked to grade the pupils in ranking according to how likely they were to have been to obtain that grade https://www.gov.uk/government/news/further-details-on-exams-and-grades-announced all pretty scary stuff. I think she would have preferred to have sat the exams and at least felt that she still held some control over the situation. Whilst she is not required to complete any extra work she has decided to immerse herself in one last project that the teacher has set as an optional. I have read it and it is pretty impressive.

She is impressive, she has worked hard from the very start of her A levels, and has recently been accepted to study law at all five of her university choices, these included three Russell Groups https://russellgroup.ac.uk/. She isn’t studious, it does not come easy for her, but she puts her head down and gets stuck in. I am very proud of her.

Bonnie has been home educated for the last four years. Now as some of you will have currently been introduced to the world of home schooling I do have to point out that it is not the same. Normally we can go and visit art galleries or museums or at least pop to the local art shop to browse the colours whilst Bonnie decides what she needs for her next master piece. We do not normally have an armful of celebrities offering free access to websites, we do not normally have my husband around as much to provide a break for me, we do not normally have Joe Wicks jumping up and down encouraging us all to get the day started. The point is that it is a lot tougher for us both than you would think.

The flip side is that Bonnie does have more company at the moment; on the whole this has been a good thing. Her sisters have more time for her and it is great to hear them all giggling over something that they have seen on the internet, probably at someone else’s expense.

Whilst on a trip to Cornwall last summer she discovered a book at the cottage that we were staying at and has finally managed to get my husband to contact the owner and obtain the title of the book. The book has arrived and she has started it, she is awesome this book is far too complex for me https://www.amazon.co.uk/Parallel-Worlds-Science-Alternative-Universes/dp/0141014636 .

0

That leaves me with my youngest Lizzie. She attends a private school, and her days are very long and very structured. They include a lot of physical exercise and a great deal of enthusiasm is required. Her days since lockdown are still very structured and still very long. I marvel each day at how she gets up logs on and keeps going and going and going, her resilience and positive attitude inspire me.

Technology has been amazing in providing her with online lessons in which she can interact with her teacher and classmates, it’s not the same but it definitely has kept her learning on track and ensured that she has not fallen behind. It has also given me a chance to see how amazing she is at certain subjects that she says she “hates”, I now see that it is a lack of confidence and not an issue with understanding the subject. One thing that I am sure of is that this is not the same as home schooling, this is home learning, it is very different.

In conclusion it would seem that they are all coping very well indeed to their different learning situations, but before I go I have to say something. Whilst the learning is going well I am really upset for them. I am upset that Lizzie turned double digits this week and could not have a birthday party, I am upset that Bonnie cannot get her ‘teacher’ back one to one and I am upset that Scarlett will not be able to feel those mix of emotions as she walks down the corridor and out the doors of college for one last time.

Distraction is the key

So in last week’s blog I wrote about the ongoing situation of lockdown and the impact that it is having on Bonnie. I briefly touched on the OCD issues but today I wanted to write more about this, in particular because I feel that my last blog painted a rosy version of some of the issues that Bonnie faces and yet I am fully aware that I should not be blase about some of these points, OCD in particular.

Bonnie has received therapy in the past to help her deal with her OCD issues ,you will also be familiar from previous blogs that the therapy did not go so well and caused Bonnie more issues than it solved, which means that she feels that if she does not do certain things in a certain routine then bad things will happen. At the moment the majority of us have daily, if not hourly, concerns worrying about our loved ones as the worrying levels of people losing their life due to COVID19 continue to happen around us out of our control. Now imagine if you felt that by following a certain act or routine that you could keep those loved ones safe, this is what Bonnie does. Currently the situation means that statistically something happening to one of her family members is an increased chance from normal so her OCD is higher than it previously has been.

The issues regarding the washing of clothes, as I mentioned last week is acceptable. It is quite right that at the moment we keep on top of our hygiene including the washing of hands and whilst on first appearances it would be perceived that Bonnie has a keep grip on her OCD I have noticed numerous changes within her schedule that make me aware of a deeper issue. Not only are clothes removed from her room but a number of items, books, makeup, shoes, things that are placed in the hall outside her door. I appreciate that it is a small price to pay for giving her some peace of mind, but eventually after a week or so more items seem to live in the hall rather than her room. Yesterday we took time to replace the items one by one in a neat order but I am left wondering how long it will be before they return to the hall.

One of the hardest ones for me to deal with is her issue of taking the toilet roll, at night, and throwing it down the side of the vanity cupboard in the bathroom. This can be rather frustrating if you get up in the middle of the night, and lets face it these days I always need to get up. The toilet roll is lodged down the side and the gap is rather tight, I am not very tall and the position of where it has fallen means that I sometimes have to risk hitting my head of the window sill or unit, or I can take the third option of drip drying …. eew a bump on the head it is.

Bonnie’s latest therapist, a private one, is brilliant and has recently tried to work through some of these issues with Bonnie. She is aware though, as are we, that the work involved in treating OCD is a long process and its hard work, very emotionally upsetting for Bonnie and tends to set her back for a while before you begin to see the improvement. We have collectedly decided therefore that it may have to be put on the back burner for now. For now Bonnie will continue to paint, read and train her dog and find time to distract herself from these worrying thoughts.

Distraction is something that most of us are currently doing; I have been gardening more now than I have ever been. It is important to find ways of making our lives seem good again and I have reduced the amount of time that I look at social media and the news, I find it all too much and it brings me back down to life with a bump. Put aside the financial worries and the issues of schooling our lives are what matter the most and I am very lucky not to have had loved ones taken by this horrendous virus. I am reminded that we should always choose our battles and I can therefore continue to live in my little distracted world and tackle the ivy growing on the walls, the war of fighting OCD is for another day.

Are you still writing ?

Well guess what, I’m back !

A couple of months ago I was asked by several different people during various catch ups if I was still writing. The answer simply is no, the reason why though is a slightly more awkward one, I’m not even sure awkward is the right word, maybe embarrassed ? Let me explain why.

Blogging for me is an outlet, I really enjoy expressing myself in this way and whilst I totally appreciate that my style may be rubbish and that my grammar is appalling, it is never the less my own work. Blogging though is like many other forms of social interaction, your usage is monitored and you can obtain feedback on the number of views that your posts have had etc and there in lies the problem for me. I started to loose sight of the aim of my blogging and become obsessed with the numbers rather than the reason for writing. There you have it, simple pure embarrassment in its basic form.

So for the wonderful friends who asked me the question “Are you still writing ?” thank you, thank you for making me question myself and get my butt in gear.

I was going to start a blog about what we have been up to the last year blah blah blah but then COVID 19 hit us all like a ton of bricks and more. The biggest question I then got asked was “How is Bonnie coping?” and this prompted a conversation between myself and Bonnie and the conversation was a pretty interesting one.

Bonnie has Asperger’s and I could understand why many family and friends would feel that this could send her into a spin but actually what has happened is that for once everyone else has had to shift into Bonnie’s world.

Bonnie has a few friends, very limited because she only likes some people, so if you’ve made it on to her friends list then you should give yourself a pat on the back. I say a few, it’s not that many, but she does have friends on the internet. She cannot meet these friends due to the distance in which they live from her, and people always used to judge the interaction. “It isn’t a real friendship !”, “How can she read their visual clues and expressions ?” Guess what though, that’s the only friends I have these days too. No more can I have face to face catch ups with my pals and put the worlds to rights over a slice of cake.

Quickly I established that I too can use various social get together apps ( that is if I have been brave enough to put on my make up and a decent bra) and have a great time with my friends.

Going out has never been high on Bonnie’s to do list. She has a routine and it suits her. Her trips outside the house are very few and so life prior to lock down was also judged. Not anymore. Her routine has become the routine for most people and so whilst the social butterflies are struggling with this new found containment she is where she has always been, at home surrounded by the things that she enjoys. Art, reading, trampolining, surfing the internet, these are all things that she has maintained.

For most of us we are shocked at the sounds around us, for the first time in years we are sitting back and taking notice of the birds in the trees, are they louder than they ever were or are we just taking the time to notice? You can see them soaring in the clear blue skies and for the first time ever maybe see all the details of their beautiful wings. For Bonnie though this is something that she hears and sees all the time. Her heightened senses are something of a super power, a power which we all seem to have adopted now that the world around us appears to have stopped.

The supermarket is not a place that she has been too. I come home with horror stories of the game of pacman around the shop trying to keep a distance, trying not to make eye contact, trying to pretend that my purchases are essential She laughs when I tell her this. That mum is normal. You see to her it is, avoid people and keep your head down.

We all know the importance of washing our hands. I say to her “but look at my hands, they are cracked and sore and it hurts”. She takes a deep breath and reminds me that she has had to have cream prescribed from the Doctor due to her OCD of hand washing and I take a moment. I am having to cope with this issue for a few weeks, she has been dealing with this for years. The same goes for the washing of clothes. She has had an issue with clothes being taken off when we get back from an outing for years now and putting them straight in the wash. Now though we are all doing this. It used to drive me insane, now I realise it was just plain smart.

The most positive thing to come out of this horrendous situation is that my family is all pulling together. They are being nicer to each other, more tolerant of each other and helping each other. I know Bonnie likes it like this, I love it like this and I hope that when our life returns to some sort of normality that this will continue…… until then I shall remain bra less.

Mental Health Awareness Week ! You are having a laugh.

Oh gosh, so where do I begin ? This has been one of those weeks ! Sometimes I can ease the stress of my harder weeks with a large bar of chocolate and a glass of wine. This is not one of them…

I have two teenage daughters, both of whom suffer from social anxiety but with varying levels. The eldest daughter is nearly 17 and I am fully aware that she experiences anxiety when dealing with certain situations, for example she recently had a job interview and she felt very anxious about it. That’s normal right? I think it is and she understands that it is too. She knows that if she has to attend several interviews that the anxiety will ease and she will know what is to come and what to expect. I am not down playing her anxiety, it’s not easy. When I was in a high powered role at work I often used to get very anxious about meetings. How would I get there? What if I got lost? What if I was late? Who would be there? However, for both of us we understand that these feelings of anxiety are normal and also that some level of anxiety is good for you. As a family we were recently able to have a tour of some African elephants and we were told that they too needed some level of anxiety or they became bored. So anxiety is not necessarily a bad thing, you just need to understand it.

I am also aware that I need to respect her boundaries, she is at that age when she is becoming an adult and she needs some privacy and so I only get involved when she asks for my advice or needs my help. I try to get the balance right but I am sure that at times she wants me to interject more often but sometimes I miss the signs. I know I don’t always get it right, I know because she tells me. Ultimately though I feel that she has enough people around her that she can turn to to ensure that she is safe.

The other teen in my life Bonnie is soon to be 14 and she is also experiencing anxiety but because she is home schooled and autistic we spend a lot of time talking about her anxieties. Some of them seem to be crazy (some drive me crazy), but they are real big issues to her. The things that I find hardest about her anxieties are that they seem to have really bad physical effects on her. For example if she is worried about something, even ever so tiny like the length of her hair, she obsesses and obsesses about the problem until she feels faint, her heart races, she sweats and has a headache. She also can experience psychological feelings and because I am not a professional, I really worry that I am not giving her enough.

So this week we visited the local GP. Bonnie explained how she was feeling and the doctor suggested that she be referred to CAMHS. As you may have discovered from reading previous blogs, Bonnie and I are not big fans of CAMHS. I still have yet to find anyone with a positive experience of CAMHS so for Bonnie this was not an option. We did ask for advice on private autistic counsellors but the doctor was unable to suggest anyone. In this day and age ? (big sigh). We talked about medication to help but due to the fact she is under 18 he could not prescribe this and that she would need medication from a consultant. As Bonnie’s intelligence levels are very high she is aware of the downsides of such medication, having researched this area thoroughly, and she is therefore very wary and would only use medication as a last resort but she feels that she is at that last train station and where does she go from here. It seems to her as though all avenues have been shut down and that she is left alone.

So we talked more about counselling to the GP and Bonnie explained her fears that she felt that counsellors would twist her words and not understand what she was trying to explain. The GP then asked her “Are you suicidal ?” “No” she replied. “But what if you were, would you know where to get help from?” “But I’m not ” she replied “Can you talk to mum? if you can’t, then you can text her from another room” Oh seriously this dude was pressing every button for me. Bonnie replied “I can talk to my mum and once again I am not suicidal”. We took his couple of cards with suggested online counselling, which by the way Bonnie tried the minute we got home, but that they were hopeless, with no understanding of autism and just left her feeling more isolated. What Bonnie found unbelievable though was that she had told this GP that counsellors would twist what she was saying and not really listen to her and here was a prime example of that. She was flabbergasted that he continually asked her about suicide. By the way GP top marks for putting the thought into her head, you did a great job there, really helpful (yes that is my sarcastic voice).

I know what he was trying to do was cover himself. He had no time to discuss these issues with her, he could not provide a clear path for her to follow to get help, he was clutching at straws and trying to cover himself by saying that he had discussed what she should do if she was suicidal. Oh that’s great for him if the sh@t hits the fan and she does try to kill herself but what about her ! To top it off we are in Mental Health Awareness Week in the UK, with programmes about the help you can get etc. Well where is that help ??? The programmes that have been shown highlight the long waits that people have to see the counsellors, they quoted 14 months in one programme for CBT counselling https://www.nhs.uk/conditions/cognitive-behavioural-therapy-cbt/how-it-works/. 14 months wait for a
mental health issue is disgusting, no wonder the GP is talking about suicide and no I am not being sarcastic now, I am angry that we are still failing those in society that need help.

So there we go, that’s my week. It’s been a pretty horrible one for me but an even more horrible for her. I would like to end on a positive note though so any suggestions that you have on coping strategies for her would be really appreciated. We have tried herbal remedies, writing in a diary, yoga, exercise, diet, talking etc and these all help slightly but not enough so I am open to any comments that you may have. As Einstein said ” Anyone who has never made a mistake has never tried anything new“.

I am me and you are you!

Sometimes you ponder and think and turn things around in your head that you just cannot explain in words. I have been doing that for sometime now, wondering how to write this blog and if it would make any sense. I’m still not sure that it does, but then again hopefully someone will understand what it is that I am trying to explain and the questions that I am asking.

For me, I sometimes let my brain think too much and then I get stuck on a thought process that literally just blows my brain. For example: Death, I just don’t get it. I understand it from a religious aspect, from a practical point of view but what I can’t complete in my thought process is just what happens to me? Where do my thoughts go? I’m someone who likes hard factual proof and with death we just don’t have that.

At the moment what I am searching for is the answer to “what is different about myself and my daughter Bonnie?”. I am aware that many autistic people do not like the labels of autism, normal, etc and this blog is not meant to cause offence to anyone in anyway and I appreciate that some of my terminology may seem insensitive but please stick with me and if possible provide as many comments as you can.

You see I had recently read the book The Colour of Bee Larkham’s Murder’ by Sarah J Harris. The book is about a fictional murder and how an autistic teenage boy, Jasper, is caught up in the situation. It talks about how he develops friendships, some of which could be viewed as inappropriate and how he expresses his emotions through his art work. The most interesting factor for me though was that he suffers from synesthesia, which means that when he hears sounds he sees them as colours, below is a link which describes the condition in a much more detailed way if you are interested  https://www.livescience.com/60707-what-is-synesthesia.html Jasper also has problems recognising faces and so when trying to piece together the events that lead to the death of Bee Larkham you can understand the complexities involved. https://www.harpercollins.co.uk/9780008256371/the-colour-of-bee-larkhams-murder/

Allow yourself to get into the mind of Jasper

This started me wondering what things that my daughter feels and understands as normal for her but that generally in society we would not have not considered. It’s a little bit like someone being born with something that causes them physical pain and that that pain stays with them for life, but because they do not know a life without the pain they do not know any other life. How many things does Bonnie have to deal with that we do not even know about and how much is she aware that the rest of us do not have those complexities to deal with.

Recently she said to me “Can you feel the moisture in the air?” So we had a discussion about the moisture in the air. It turns out that she can smell the change in temperature without even going outside. Now I wonder how many others also experience this sense and how it makes them feel. My Bonnie really struggles when it is cold and not a sunny day, we have lots of those where we live, and so is it an inbuilt sense to help her adjust ? For me I too could tell that the temperature had changed because when I went outside I used the senses of sight, I could see that the sun was going down and the sense of feeling because my body felt colder but I did not smell moisture in the air.

So how many more areas are there like this in her life that I fail to understand? How will I ever understand them because they are not even something that I have ever though about. For me the only way to do this is to talk, and then keep on talking. Initially when she would talk to me about how fatigued she became I would say, “well I’m tired too”, but then over time after talking about this I now understand that my tiredness is nothing in comparison to hers. I am aware from talking to other autistic people that some count the leaves on trees whilst taking a country walk. That some people deal with busy cities by imagining that the people around them are in fact trees, because this helps them cope with the sensory issues.

I am very much aware that Bonnie is Bonnie, in the same way that I am Kate and that we are all very different in life. I don’t want people to judge her for her autism, I want them to accept that she may not conform to what they judge as conventional but that if they spoke to her they would see the amazing abilities that she possesses. Her intelligence cannot be recorded in the same way that other children her age are tested because her understanding of the world is unconventional, not weird or odd or strange but just different. Maybe if we all stepped out of our boxes and took time to see what is around us then we may learn some of these different approaches to life and the world may be a better place.

When your daughter takes over your blog….

This blog is not my usual blog, today’s blog is written by my daughter Bonnie.

Hey, my name is Bonnie. I am 13 years old and I have Asperger’s syndrome. Today with help from my mum I would like to blog about my obsessions and how they make me feel.

I understand that most people have obsessions but for me the obsessions are much more intense. I have recently recognised that some of these obsessions are unhealthy for me, despite the fact that from the outside they may appear to be good for my physical and mental well being.

Take for example my obsession with ‘Exercise and Diet’. Everyone knows that in order to be healthy we must take regular exercise and watch what we eat and drink. I started to work out to you tube videos because I wanted to feel better about myself. It wasn’t my plan to become a gym freak but I just wanted to spend some time working on my body, maybe toning up a bit and feeling those endorphins flow. My sisters get regular exercise at school but because I am home schooled I am aware that I need to motivate myself to exercise. The problem for me is that I became obsessed with the workouts.

What started as a 10 minute easy work out once a day progressed to 30 minutes of intensive exercise that is meant for more experienced people that have spent months building up to these exercises. I went from the 10 minute workouts to the 30 minute workouts in a week. When I look back I don’t know what I was thinking. You see for 13 I am pretty switched on to the downsides of having Asperger’s and one of those is that I get really tired. I understand that for most people working out for 30 minutes a day would not be that hard but for me the knock on effect is huge. The other major issue though was the anxiety that this obsession created. For me I was caught in a catch 22 situation. I wanted to work out but my body was too tired, my brain wanted me to full fill the desire to work out but the anxiety of not being able to do so made me feel extremely stressed. I’m literally tired just thinking about it.

At the same time I was increasing the amount of water that I was drinking as this too was something that went hand in hand with the exercise, and so was my diet. Let me explain. So I needed to drink more water, but there is only so much water that your body can physically handle. My obsession meant that I was caught up in inner turmoil with what I wanted to do and yet what I physically should not do. I used to say to myself “I need to drink more water, but I can’t”. It had been brought to my attention that you could drown from drinking too much water. I know that I was not at that point but you must understand that for me my obsession could have taken me to that place.

I had a similar situation going on with food. I cut out all the processed food, sugar, fat etc but that meant that I left myself on a diet with very few calories. This did not help with the tiredness or give me enough energy to work out. I didn’t need to become this obsessive about food, I already have a healthy vegetarian diet.

On the other hand I have some obsessions that I class as healthy. One of the obsessions that I have had for about the last 18 months has been Kanye West.

Obsession makes it sound rather stalker(ish) when you are talking about a person but that is not the case. My interest in Kanye is something that I feel I can control much more easier, and if I spend more time on social media reading his tweets then the consequences are not life threatening in the way that the Exercise/ Diet Obsession is.

He too has mental health issues that mean that some of his tweets cause controversy but I find some of his tweets refreshing and at times inspirational. I find that we think in a very similar way and that we have similarities. For example Kanye went on the Ellen Show and I felt that when Kanye went off on a tangent, talking about his passion for making the world a better place, Ellen gave him a look as though he was crazy. I face those looks too. I’m not saying that Ellen did not understand him or that people do not try to understand how I feel but they do not share the same connection.

It’s hard to explain but when I spend time looking at his tweet’s and watching documentaries about him etc it makes me feel happy. I find that the world has very few icons who talk about their mental health issues. I find it refreshing that with all that he has to deal with he still manages to be a successful rapper and fashion designer. That gives me hope that I too can overcome my issues to become something. It may be harder for us to achieve things in life but I still have hopes and dreams and it may take me longer and I may have to work harder but I will make something of myself.

New York, New York.. a place for everyone ?

I first visited New York when I was in my late teens and I was petrified. I had watched far too many 80’s cop shows set in the Big Apple that made me think that I was susceptible to becoming another crime statistic. I remember walking through one of the department stores and a young boy was shadow boxing, watching himself in the mirror when suddenly the old lady with him, I’m guessing his granny shouted out “Somebody’s gonna take you out Michael”. Oh this place was far more scary then where I came from.

So when one of my daughters autistic interests became New York and my husband decided that I should take her to visit it for a few days I had my reservations.

A lot of things about our trip to New York concerned me. This was at a time when she was going through the diagnosis process for Asperger’s and I was only just starting to get a handle on all her sensory issues. I asked her over and over if she was sure that she would be able to make the trip, and she repeatedly replied yes, she was so excited.

Our first issue was the train, Bristol to London, then London to Heathrow. These journeys turned out to work surprisingly well, I had tuned in to the fact that headphones really made a huge difference to her and so she plugged in and away we went. Next up the plane Heathrow to New York, which again went really well. It would seem that the journey was just about the right amount of time for her not to go to the toilet (see my previous blogs on this subject) and the snacks that I had packed for her kept her going.

I had recalled from my previous experience that the taxi situation was quite a difficult one. The journey from JFK into New York is a fair distance and the bouncing of the cabs tend to make you feel a bit sick. I forewarned her of this and yet again no problems. By the time we reached the hotel I realised that a lot of my fears about this trip were not going to materialise. We were lucky enough to stay at the https://www.lottenypalace.com/ A wonderful hotel, with a fabulous bakery, which meant that in the mornings we were able to grab something to eat without the fussiness of having to be seated and the formalities of breakfast being served. We visited just before Christmas and we treated to the most amazing decorations, including a copy of the hotel made out of gingerbread.

Our itinerary for the next few days was extensive. We visited the Empire State building, which meant that my daughter had to tackle her fear of elevators. 102 floors whizzed by as we shot up the elevator like Charlie in Charlie and the chocolate factory, luckily we didn’t come out through the roof. She didn’t enjoy the experience, she kept her headphones on and closed her eyes, so I am particularly thankful for the speediness of this lift. I too had to overcome my fear of heights to be able to take in the most spectacular views on a beautiful clear crisp day.

The Statue of Liberty, meant not only a long walk to the point of where you catch the ferry but we spent a great deal of time walking around this grand lady. Soaking up both the sunshine (yes it was super sunny) and the history. We stopped and ate and this for me has become a major lifeline, it is very important that she stops and eats, it gives her a chance to get back on track. You do not want to see her if she doesn’t get a chance to eat, all I’ll say is that it is a bit like the incredible hulk, you don’t want to see her angry.

As my daughter was only ten at the time I decided that it would be nice to see some of the sights that were more suitable to a child and this included a visit to Santa’s Grotto at Macy’s. We managed to obtain tickets to skip the wait in line queue but we still got a chance to take in all the magic. It’s a must for all children, big kids too. This particular Santa was very accommodating without me having to point any issues out and he made her as relaxed as he could, after all he may be Santa but he’s also a stranger and children with Asperger’s don’t usual like strangers. We came away with a wonderful photo that I will treasure for forever.

A trip to the Zoo in Central Park was a must, we got to see the amazing bears, seals and much more including the snow leopards, which was another fascination of hers. The Zoo is a great size for children on the spectrum because it has a lot of space around it so it doesn’t feel too enclosed and yet at the same time it a decent amount of animals for the children to see. Take some time to visit the Tisch Children’s Zoo also at the same location with its goats, another obsession, and Manhattans only cow. https://centralparkzoo.com/

New York before Christmas is crazy busy and all the decorations and lights are amazing. Who could not take their child to the Rockefeller Tree and not reenact the scene from Home Alone 2 where Macaulay Culkin is reunited with his mother. Oh yes that was a highlight for me. The tree is absolutely spectacular, out of this world. Check out this link to learn more about the history of the tree and the lighting ceremony. https://www.rockefellercenter.com/holidays/rockefeller-center-christmas-tree-lighting/

Our trip was topped off by a theatre trip to see Elf at Madison Square Garden, which was planned for 7:30 pm. This was the only time that I had big concerns about how much of a sensory overload my daughter might be having. You see up until this point, due to our jet lag, we had been getting up really early and walking the streets whilst most were still in bed. Yep even in New York they have much quieter times of the day. Our walk through Times Square and down to Madison Square Garden was met with hundreds, thousands, maybe even millions (OK that’s an exaggeration, I think ) of people all out walking through the streets off to parties, off to bars, even still off to the shops to purchase Christmas presents. My daughter however sailed through these people as though she was a New Yorker. Whilst I was bumping into people and apologising, something which us British people are very good at, she continued walking through the throng of people like she had no cares in the world.

Once we returned from our trip and the pair of us had told all our tales to the family I spoke to her about how she was on that last day and asked what she was feeling as she walked through those busy streets. “New York” she said ” I love it. People there don’t judge you. They don’t expect you to say sorry when you bump into them, they don’t expect you to say Good Morning and make polite chit chat, they just let you be who you are. I think I’m going to move there when I’m older”.

Three years later she still has the plan to move to New York, she loves cities, she finds the people much more accommodating. I feel that she has the chance to fit in and she’s right people are not so judgemental because they see all walks of life.

As for me, I love New York too, these days I feel more like Carrie Bradshaw when I visit rather than a pending crime statistic and when she moves there guess who will be her first visitor.

When the ‘experts’ let you down.

Supporting my daughter through her journey with Asperger’s has meant that sometimes I have to put my hand up and say that I do not have the answer. In these circumstances I seek out support from ‘experts’ but that support is in my experience practically non existent. The problem is that the ‘experts’ also have short comings and for my daughter she learnt this the hard way. One area of so called expertise is CAMHS (Child and Adolescent Mental Health Services).

These days many people will be very familiar with CAMHS, https://www.nhs.uk/using-the-nhs/nhs-services/mental-health-services/child-and-adolescent-mental-health-services-camhs/ it seems that not a week goes by when I don’t have a conversation with someone about CAMHS. Last week it was a grandmother who has a grand-daughter seeing CAMHS for issues relating to self harm and an eating disorder. It should be a valuable department assisting young people with their emotional or behavioural well being and yet I have not heard one positive outcome as a result of an adolescent seeing CAMHs. For us the experience started like this….

My daughter’s physical and mental well being greatly improved once I decided to home school her. Everyone that meets her now, some three years later says that they cannot believe the change in her. However, she does suffer from depression at times. I would class this as mild depression and it could possibly be SAD (Seasonal Effective Disorder) https://www.nhs.uk/conditions/seasonal-affective-disorder-sad/ So one day she approached me, she was in a very bad way and I had noticed it building up for some time, and said that she needed help, help that was beyond what she thought that I could give her. She explained that she felt very low and that she could not shake the feelings, often crying and breaking her heart with the sadness. I told her that it was probably worth visiting the GP and that I felt that at her age, she was 11 at the time, meant that they probably would not prescribed anything but that they may have suggestions of help. Their suggestions was CAMHS.

The waiting list to see a professional from CAMHS is several months in our area and so this gave me time to research them and ask other people about their experiences. The feedback was not good, usually met with a comment of “don’t waste your time CAMHS are useless”. This was not very reassuring.

The time came to meet the counsellor and she came to our house, because I had explained to our GP that my daughter’s anxiety was heightened when she went to unknown places. As per previous experience of professionals in the field of autism the CAMHS counsellor and her trainee arrived late, therefore already creating tension, anxiety and unnecessary stress.

My daughter did not want to talk to the counsellors, after all she does have Asperger’s and as anyone reading this blog will know it was pretty obvious that I would have to be her voice initially, these were strangers. So I gave an explanation of why she was attending the meeting. I gave examples of when she was really low, explaining that it mostly happened on dark dreary days and that on sunny days she would present completely differently. I had also explained to my daughter that as she was entering her teenage years it was not uncommon to have these feelings of self doubt and not being able to shake that dark cloud overhead.

They asked me to explain more symptoms that she was displaying, and with some minimal contribution from my daughter, I casually mentioned that she had a thing about washing her hands five times. Well it was like I had opened a magical box, they moved forward in their seats and started to ask more and more questions and what would later become known as ‘The Five Thing’. The five thing, they decided was OCD (Obsessive Compulsive Disorder) https://www.nhs.uk/conditions/obsessive-compulsive-disorder-ocd/. I groaned inwardly, not another thing that she has to deal with. How much could she cope with. The counsellors then asked her to complete a test, which I could remember from my psychology A Level days. The questions were for example ::

I make friends easily.
 Disagree strongly (not at all me) 
 Disagree a little 
 Neither agree nor disagree 
 Agree a little 
 Agree strongly (this is very like me)

The outcome of the test provides results that give your approach towards certain areas and so the counsellors took the results of the test and agreed at the end of our meeting that we should all meet again in a couple of weeks.

The next meeting with the same counsellors, one of whom is an autism expert, was spent devising a plan on looking at how we could handle ‘The five thing’. I remember thinking, Oh Really?. I mean I know that they have studied and trained to deal with these adolescents but it was not what we wanted them to focus on. I had no choice though other than to run with what they thought was best. The first part of the plan was to write down all the things that she did five times, well that was quite a long list, it included things such as turning light switches off and on, moving objects. She had to list them in order of what she thought would have a more severe consequence ie filling the cup with water and emptying it five times meant that something bad would happen but no so bad as if she did not turn the light switch on and off five times. The second part of the plan was that my daughter would walk to the kitchen with the trainee and fill a cup of water and then tip it away. After she had done this for five times and the counsellors had a brief chat, the trainee then said that she was to now fill the cup but not tip it away. She was to take the cup of water into the lounge and write down on a piece of paper her anxiety levels. Well obviously they were going to be high, two strangers in your house, testing you, observing you! After 10 minutes she was then asked her anxiety levels and the process went on until 20 minutes had elapsed. The counsellors then decided that my daughter needed to practise this several times a day to break the habit and desire. I was to sit and record the anxiety levels and what we had done during the process to try and take her mind off of the task ie reading, drawing. We agreed to meet again in another week, but this time it would only be the trainee.

They left our house and my daughter said “What are they doing ? This is not what I wanted help with, and by the time they run through this process for every area on my list that will take weeks if not months”. She was right. I was thinking oh great how do I fit this into the day, I have two other children, two goats, 3 chickens, 1 rabbit, 2 dogs to look after and I knew that the process would take much longer than 20 minutes per task because I knew that I would need time to prep my daughter before and help her cool down after. It was also not the only area of support that my daughter needed help with, and let’s not forget it was still not dealing with the issue of her depression which was the one thing that I could not help her with. I was so cross that they did take any time to consider all the other areas that I had helped her with such as her anxiety, sleep and sensory issues. Had they not seen the pile of books that I had bought. The OCD was something that with the help of a book and some internet research that I could have tackled. Keeping these opinions and thoughts to myself I told her that it was a good idea to try it and we would be positive about it and so that’s what we did, we tackled it head on.

By the time we next met with the trainee, I was exhausted. My daughter was exhausted. We showed her the outcome of the tests and how the longer time went on the more the anxiety reduced. I thought that she would be ready to move on to the next item on the list. Oh no, we repeated the task again and spent another week recording the outcome.

At the beginning of the next meeting I explained that this process was not what we had expected that we needed help dealing with depression. The trainee said that we had to stick to the plan but that she was also concerned that my daughter was hoarding things and this also needed to be tackled. Now I have an older daughter and I strongly believe that they all go through a phase of hoarding. They don’t want any drawings to be thrown out, or any stones that they have collected from the playground to be returned to the outdoors. It is part of who they are. They are free things that they find or make and turn into magical items. So I could understand why my daughter did not want to get rid of some of her items. Even an old chocolate box can have a meaning. Mostly, they grow out of it though, it’s a phase. The trainee however was instant that the next time she came she would expect her to remove some items from her room and deposit them in the bin.

My daughter at this point had started to take a huge dislike to the trainee. I have noticed that she does this a lot. She starts off very neutral but once she has made an opinion of you then you are either in or you’re out, there is no in between. This lady was on the way out! My daughter knew what she needed to do because you see she is no idiot.

The next week we once again met and presented our findings. The trainee was pleased with the results and then my daughter went and produced the items and put them in the bin. The trainee thought this was amazing, the progress that she had helped my daughter make. I think we can all laugh at the stupidity of this trainee. The trainee was so impressed that she agreed that the next meeting should be held at the CAMHS offices, as my daughter had made such great progress. I mean come on, so what she really thought that suddenly my daughters original reasons for not meeting at the offices had disappeared ? What she really meant was that it was easier for her. My daughter was instant that we move on from the five thing and that during the next two weeks she would be tested on other ‘five’ issue problems such as the light switch. It was agreed but the trainee felt that it was too quick and that we needed to spend longer on this. She said that at the next meeting she would repeat the initial testing to ascertain if anything had changed in my daughters responses.

Here we go again, another week and another meeting. My daughter as I have already said is no fool. The test was presented to her and this time she answered with answers that she knew would get her out of the situation. So for example if it asked How often have you been bothered by feeling down, depressed or hopeless? she would choose an answer that was not all how she was feeling but what the trainee would be looking for. So not often would be a suitable answer to get the trainee off her back, without being too obvious.

At the start of the next meeting the trainee told us the outcome of the findings and she was super pleased. I bet she thought she was the most wonderful CAMHS counsellor ever. Well she was in for another shock.

We agreed that at this meeting I would leave my daughter with the trainee for the hour session. Progress hey. The counsellor had my number and would call if there were any problems. Fifteen minutes later my phone rang. “You need to come and collect your daughter, she has been extremely rude and she needs to leave”. I dashed back to the offices and ran into the meeting room. It transpired that the trainee was talking about Asperger’s and the pronunciation of the word was not correct. So my daughter pointed it out. Not horribly but in a matter of fact way. “You said Asperger’s wrong”. The trainee proceeded to tell me that this was rude and that perhaps my daughter would not want to return to the sessions again.

She was right! No she did not want to return and nor was I prepared for her to return. The stupidity of this trainee, she has been deceived by the results of a test that anyone could tell had been fixed. She felt it was acceptable to call an 11 year child rude because an 11 year child with autism had correctly pointed out that what she was saying was incorrect. Needless to say that we never saw the trainee again. We did receive a letter from CAMHS saying that they were pleased with the work that they had done and how they had obviously helped my daughter with some of her issues. Ludicrous, all they did was confirm to her that she has very little support other than her family and that so called ‘experts’ do not know what is best.

After all of this I explained to my daughter that the main thing was that we had tried. We then grabbed some books on SAD and did some google research and helped ourselves. We put our own plan in place to help her deal with it and she is in a much better place.

So whenever anyone mentions CAMHS I get a shiver down my spine and I say to them “try it, but you may find it isn’t what you think it’s going to be”.