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 .

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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.

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.

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”.



The Diagnosis will make it all OK.

When I talk to people about my daughter they usually have two questions that they ask, number 1 ) How did you know she had autism ? and number 2) How did you get her diagnosed? The order of these questions changes depending on who I am talking to. For most people it is question 1 first, but for those who feel that they too potentially have a child on the spectrum it is normally question 2 that comes first.

You see getting a diagnosis is extremely hard, especially for girls with Asperger’s and waiting times to see professionals vary depending upon where you live. I was recently advised that in the Bristol region wait times are approx 18 months for the initial consultation. Some people may feel that 18 months is not too long, but for someone going through the process it is a long long time. Especially if your child is at school and they have not recognised your concerns, meaning that until your child has a full diagnosis the school will only provide you with a limited amount of support. The other issue is that 18 months is the time until you get to see the paediatrician not the actual diagnosis. The paediatrician will normally require reports from Speech and Language, Occupational therapy, School, GP etc. By the time you go through the process from start to finish you are talking years! Yep years.

In our case I visited my GP armed with a stack of research and information that I had carefully digested. I had notes of her routine, behaviour, mental state, physical state. You name it I had it. I even made her take online assessments. I walked in armed with books and print outs so my GP could see that I was very serious about the situation. She referred us and our referral date was set 6 months later.

My daughter and I attended the appointment, which was an hour’s drive away, great start for a kid with sensory issues, followed by the usual from the receptionist “he’s running late.” Great for kids that need routine! I am an adult without autism and so I understand that these things happen but the anxiety that was building up within my daughter was not acceptable. I sat there thinking these are places and people that are handling these situations all day everyday, advising on them so why put their patients through this. If they can’t get it right how will I ever be able to support her. The other part of my brain thought, well she is going to have to deal with these situations for the rest of her life so lets start preparing her. Come on mum get supportive. Uhh! Caring, emotional parent versus practical tough parent, whilst being supportive at all times.

The paediatrician spent 20 minutes with my daughter talking to her and talking to me. He didn’t probe her for information he just asked general things about her well being etc and he was very good at making her feel at ease. He asked her about her likes and my daughter explained her obsession with animals in particular dogs and horses. At the end of the discussion he said, “Well this is one of the clearest cases of Asperger’s but I need Speech and Language and Occupational Therapy to back me up before I can give her an official diagnosis”. ” I suggest you read books by Tony Attwood as they are really helpful, especially anything that you can find on girls with Asperger’s”. “I’ll see you again once we have that information”

Here we go again.! How long will it be to get an appointment with these departments, and the answer was 6 months. Another 6 months. All through that time I felt a little bit of contentment that I was perusing the right path for her but at the same time a lot of anger that she was not getting support right away. Where were all the miracle workers who were going to support me, get banners out and fight for my daughters rights… at this point I am in hysterical laughter writing this blog. I’ll come back to this later on, bear with me.

Speech and Language allowed themselves an hour to spend with my daughter, with me in the room. The whole process was not too difficult but because my daughter was aged 10 I suppose it was a little more challenging than just observing her play, she was too old for that. They ran through a series of scenarios with her for example, they would show her emotion cards, one I distinctly remember was a man sat in his car with the window down, he had is hand clenched in a fist with a very aggressive look. My daughter had no clue that anything was wrong with this man. These were emotion cards that preschoolers would understand. She also talked, classically she talked too much, about her obsession with dogs and horses. I left the meeting feeling that it was very obvious and the report would back up what I thought. The report however that was provided 4 weeks later left me wondering if the Speech and Language therapist agreed with me or not. I am not an unintelligent person but the report was not easy to digest. It was not a magical report that once opened sang out the words “Yes,Yes you are right, you were right all along, of course she has Asperger’s”. It was a very clinical report full of technical jargon. My heart was telling me though that what I had witnessed in the session was clear for all to see.

Occupational therapy on the other hand were amazing. They talked to my daughter about the sensory issues, which I suppose at the time was one of the biggest problems. Hair cutting, hair washing, bathing, even cleaning teeth, the basic hygiene problems that were so challenging for my daughter on a daily basis. For me it was also the confirmation that these things which most of us take for granted can cause so much distress for others. I felt like another fist bump in the air, followed by a big sigh. It’s a double edged sword, you make progress and get confirmation of what you thought but you cannot loose sight that this is all so hard for my daughter. She explained about how sitting still for too long a period of time was not good for my daughter because it was sending her body into a sleep time state and that horse riding was great because it did the opposite. She provided a report for every sensory issue that had been raised and she provided options of things available to try to relieve the pressure and stress for my daughter. For example exercise balls to sit on to keep the core muscles moving rather than sitting on a chair, sensory toys to chew so that before my daughter brushed her teeth, her teeth would have a chance to become less sensitive, special toothbrushes for her to use that meant she could do the top and the bottom at the same time. Even explaining to me that for my daughter when she has a shower it can be painful as even though it may be the softest spray, the spray hitting her body could cause physical pain. I realised how oblivious I was to so many things that she was going through on a daily basis.

The second date came through to see the paediatrician for April. At the end of our last meeting he explained that he held a clinic a bit closer to our home so that made our journey slighter easier. We walked into the room and within 10 minutes we were out. During the 10 minutes he asked my daughter how she had been, he said that he had reviewed the information from the other departments and that she did have Asperger’s. He said it was one the quickest cases ever. 12 months from his initial meeting with her until now did not seem quick to me but when listening to the process that other people have gone through I realise how quick it was.

“So I said to him, what happens now” ? “Well she has a diagnosis, you put that down on anything that ever requires her medical history” he said . I replied “What do you not want to see her again? Ever? Even when she is 16?”. “No, that’s it she has her diagnosis” he says.

Now you see where the hysterical laughter comes from. Where was the support group, the network of people that were going to provide us with help and assistance and prop us up. Who was going to help me ensure that my daughter received all the support she ever needed. I know that there are groups you can join but they are not specifically tailored for the individual. Every person with Asperger’s is different they all have different levels and different needs and for every 100 conversations you have 95 can be disregarded as their child will be different to yours. From the other 5 you can take away snippets of information. It’s frustrating, it’s a minefield. I hear reports of special schools that fail kids with Asperger’s, I hear reports of health departments that fail them and my hysterical laughter turns to a desire and a passion to continue to fight and support my child and I will have days where I cannot be the best but I wont give up because at the end of the day you need more than a diagnosis on paper and hysterical laughter.

I recently found this photo on my daughter’s Ipad that she had taken whilst going through the diagnosis process and do you know what she’s right it’s going to be OK.

So what do you really think about me?

For those of you who have started reading my blogs you will be aware that my main focus is on my 13 daughter who has Asperger’s and therefore you may be forgiven for thinking that the title of my latest blog is about how people perceive her, it’s not, it’s about how they perceive me.Last week I was prompted by a series of events that made me sit down and really think about how my daughter’s diagnosis changed me.

The first situation was one where my youngest daughter age 8 was off to sing in a school choir, this meant a 5 hour round journey to go and watch her. Another parent, who has a daughter the same age and who also has a younger son who has autism, age 6, was trying to juggle her world so that she could attend the concert. She had a predicament that meant that the only two other people that her son felt comfortable staying with were not able to get to her house in time for her to make the drive up to the concert. I could sense the guilt that she felt as she told her daughter that she would try her best to get to there. For those parents who do not have an autistic child they would probably ask why she did not take the younger child with her. No way, not an option! 6000 children, plus parents, plus the drive, plus all the sensory issues meant that it was a no go zone. I got it, I understood immediately, so much so that I sent her a message afterwards to remind her not to be so tough on herself. Don’t get me wrong I’m not making myself out to be a super hero or Mrs Perfect, it has been a huge roller coaster in terms of learning for me, and I continue to learn on a daily basis. Since the start of the process of my daughter’s diagnosis my life has became all about autism, reading books about it, reading articles, watching TV Programme’s, going to talks, talking to her teachers etc. I threw myself into it because I was determined not to let her down. It’s trial and error. Now though I find myself in a situation whereby all the trial and error has changed me. So how did this mum perceive me? Does she feel that I am a know it all, someone who is rather cheeky to suggest that she should carry on through the tough times? I hope not. She quickly sent back a lovely message thanking me for my support. I hope that I made her realise that she’s not alone in these daily struggles.

Spontaneity, it’s a word I love, or rather I should say that I have a love- hate relationship with. I love it because I used to be spontaneous, I used to be a bit more free spirited but I have had to adapt. I sometimes feel resentful of the fact that I cannot be as spontaneous as I used to be. For example my daughter’s situation has meant that I could no longer go to the shops on a whim, she needed prior notice. Gosh in the beginning of our journey (I call it our journey because we work really hard together to find a life that works for us both) she needed to know exactly how many items I was buying in the shop and boy did I need help if I had said 10 things and then I picked up 11. I still cannot go on a journey without thinking about if she has had enough food, when she will next need to eat, if the shops on the journey or at the end destination will have the right types of food. The toilet breaks, the length of time in the car, her sleep pattern,the sensory issues the list is endless and so being spontaneous is out the window. However, as time has gone on, we are three years into her official diagnosis, a lot of the above has become normal practice for me, so much so that until I actually sat down and thought about it I was unaware of how much of the above I do on auto pilot. Friendships are hard, they require effort and time and I have struggled with both of these things in recent years because parents of Autism have very little support. This makes me wonder though how do my friends view me? Do they find my planning and organisation all rather frustrating? Are they totally fed up of asking me out to social events because they know that 50% of the time I will cancel? Are they fed up of hearing about Asperger’s? I hope not. I hope that they understand that as much as I possibly can I make time for them, that I love listening to their stories about their day to day lives because although I have changed I need them around me.

The second thing that happened was that my 16 year old daughter asked if my blogs will ever be about her or will it always be about her sister. I get it, it’s tough. Yes, you can read all the Instagram posts in the world that give you a sense of what it is like to be autistic but let’s face it unless you are you just do not get it! That is the hard truth. As family members you find yourself treading on egg shells not wanting to say the wrong thing to offend and yet my 13 year old will say, “well try walking in my shoes sometime”. For my beautiful 16 year old though she has her own daily life issues to deal with, she’s working hard at her A levels and yet I understand where she is coming from because she too has had to change. She has to keep quiet whilst face timing friends and due to our routines she does not have as much freedom as she would like. She probably doesn’t realise it yet but the experiences of her family mean that she is more tolerant and understanding of different types of people, that she can see the view point of others in a way that some of her peers have not yet developed how to do. I do not for one moment think that this is easy for her. I wonder how she views me. Does she feel that I am biased towards her other sister? Does she feel that I do not spend enough time with her? I hope not. I hope that she understands that I love her dearly and that my aim is to make life smoother for all of us as a family.

The third thing that happened was that I went out for coffee with some mum’s from school. Again this was not without a lot of prior planning on my part to ensure that my 13 year old would have someone watching her and that she had plenty of food in that she liked to keep her going until my return a couple of hours later. I really enjoyed being out and being able to talk about general day to day ‘rubbish’. It was fun and it is something that I plan to repeat, they are not close enough to understand my day to day life so I do not feel that they are judging me. I did however find it hard to shut off and found my brain wandering to think about things relating to my daughter, again this is an auto pilot situation. So I wonder did they view me as being a bit stupid? A bit disinterested in the conversation? I hope not, one my mum said it was one of the highlights of her week so I couldn’t have come across too crazy. I hope that they saw the positives in me.

The last thing that happened was that I learnt the very sad news that a lady that I worked with had passed away on the Wednesday and her husband had died the previous the Saturday. She had leukaemia and had refused treatment to extend her life to look after him. I found this very upsetting and it confirmed that for our family that we all make sacrifices and for some those sacrifices are really life changing.