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.