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.

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.

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”.