Mental Health Awareness Week ! You are having a laugh.

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

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

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

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

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

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

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

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

I am me and you are you!

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

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

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

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

Allow yourself to get into the mind of Jasper

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

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

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

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

When your daughter takes over your blog….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

When the ‘experts’ let you down.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



He who laughs last, laughs longest

“Teeth”, I laugh out loud every time. I was telling my husband how I had taken our 13 year old daughter to the dentist. She has Asperger’s and so everything is very literal to her. So when we recently visited the dentist, she sat in the special chair and he asked her “so what brings you here ?”, “Teeth” is what she replied. It tickles me pink and so I said to her “I think I may write a blog about it you know”. Her reply was ” I think their should be a blog about your driving”. She’s right, so here’s a blog about my driving and bear in mind he who laughs last, laughs longest.

Last week my daughter and I had a couple of road trips. These were not the most exciting of road trips but ones to watch her younger sister run cross country and the following day to watch her play in a netball tournament.

I will confess that I am not an explorer, and I am certainly not a navigator. I lack the skills to read maps and I can barely understand the directions that are provided courtesy of my phone. I have no concept of “250 yards bear right”, “100 yards bear right” what is a yard ?? I have not a scooby doo and for some unknown reason my phone has decided to stop giving the directions out loud. It is nearly impossible to drive and look at a phone pinned to your dash for directions so I roped in my daughter to assist me.

“Ok, off we go, map reading, this will be so educational for you”, I said rather hypocritically. I should have known that we were not off on a good start when pulling out of the driveway I had to say “left or right?”, and was met by a “I dunno, oh left I suppose”. The weather forecast was for a small flutter of snow at about 4 pm and so starting off on our trip at 2:50 pm I felt that we should have no problem in reaching the destination, 21 minutes according to my phone, in time before the snow started to fall.
It would appear that with all the technology we have the weather is still unpredictable and so the small snowflakes started at 3:00 pm. The weather conditions combined with my daughter also informing me that we had missed the last 3 right hand turns that we were supposed to make meant that we were not making progress. The time to our destination was still 21 minutes and the snow fell thicker and thicker. A small fluttering ? yeah right. I have a car that is suitable for these weather conditions and I am a pretty good driver but I am afraid to say that I don’t have the confidence for snow and ice. In fact my daughter remembers a similar situation last year when she claims that I was going to slide on the ice and kill everyone in the car. Utter rubbish of course, a huge exaggeration but this did nothing for my confidence or her hers and I now I avoid driving in these circumstances as much as possible.

The car park for the cross country event according to my phone was right next to where the event was due to take place at 4 pm, however by the time we arrived I was so fed up, stressed and angry that I practically landed my car outside the very posh school and proceeded to walk for 10 mins to my destination through the big fat flakes of snow. The cross country event was brilliant, but the weather was freezing and in all my frustration I had left my hat and gloves in the car. My youngest daughter had a great run and the snowy conditions did not seem to impact on her placing. Meanwhile the snow continued to fall and I wondered if I should have packed a sleeping bag and provisions in my car. My husband would call this P,P,P (Pi@@, Poor, Planning) and it’s not like me to be so unprepared, planning is a huge part of my life these days.

On the return journey my 13 year old daughter did a great job in getting us home. Her directions were much more assertive and confident, it turns out that she had got the hang of the yards even if I didn’t. Luckily as we dipped down over the Mendip Hills the snow started to disappear and we rewarded ourselves with huge pieces of chocolate cake. Cake makes everything alright.

This was only a small expedition though and so the next day I decided to test her skills again. This time our trip was an hour each way crossing from Somerset to Dorset, this really was a road trip.

My daughter started the trip by saying that she would just not tell me anything about the yards but just tell me when to turn etc and off we set. With the snow gone it was a bright clear sunny day and I was feeling much more positive about this trip. For some unknown reason any navigational system appears to take you on the most bizarre of routes, don’t you agree ? and this was no exception. We made twists and turns down little country lanes, drove up the highest elevations as though I had come to the top of the world, and then drove back down again. I think that my daughters favourite part of the outgoing journey was when she told me to turn left and my brain worked so quickly at reading the ‘No Entry’ markings on the floor, by the way the No Entry was as if I was coming from the other direction, that I screamed ” Ahh, I’m going the wrong way down a (bleep word) one way street”. Ok I’ll be honest there were lots of bleep words and I am not proud of them. The fear however of something that was out of the ordinary to me caused me such great anxiety. I suppose the ironic thing is that my daughter feels like that all the time. How does she cope with that high level of anxiety all the time ? No wonder she often retreats to her bed after an outing. Or maybe her favourite part was when we entered Dorset greeted by a sign that said ‘ Dorset, home of the Jurassic coast. “Oh, I shouted out, look home of the Jurassic Park!”. My daughter burst out laughing, whilst I realised what a stupid comment I had made and tried to laugh it off with my best dinosaur impression.

We made it. Again the event, netball this time was good fun to watch and everyone headed off before the snow started again. This time I was confident that I knew the route and all would be well. The other annoying thing about navigational systems is that they never take you back the same way that they led you. Why ?? So after 20 minutes I realised that we were going a different way, “oh well” I said it’s fine I have my wing-man with me and we can crack this. Until I came to some temporary traffic lights. The person in front of me went left, but my phone directions said to go right. I looked right, but the sign said that the road was closed on a particular date, was that date today ? I don’t know, half the time I don’t even seem to remember the year let alone the date. As I edged my car out further I realised that the road was indeed open but by this time the other lights had changed and cars were starting to come at me. Quick, three point turn in the road and off we go. I say quick but it seemed like forever with the stream of cars making there way towards us and my children laughing hysterically at me. We made it home and it seems that my wing-man is pretty awesome and is booked for all future journeys.

I suppose that the moral of this blog is that if you are prepared to laugh at others then you must be prepared to laugh at yourself.

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.