I am me and you are you!

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

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

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

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

Allow yourself to get into the mind of Jasper

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.