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.

Drum roll please…. and the award for the best actress goes to …. the girl with Asperger’s.

“I cannot believe that you let me go around thinking that I was Asian!” These are the words that my 13 year daughter recently exclaimed as we pulled up at our local supermarket. They were quickly followed by my youngest daughter who is 8 saying “But you are, you are Asian” in the most sincere manner, yet with an underlying tone of fear. I personally let out a small laugh, an inwardly felt a sense of achievement that my daughter had overcome another hurdle in her world.

You see my 13 year old daughter was diagnosed with Asperger’s when she was 10 years old. It was not something that I had previously heard of and I had no idea what she was dealing with on a day to day basis. For me the most frustrating thing is the lack of information about girls with Asperger’s. Studies of girls with Asperger’s are much lower in comparison to boys. Girls demonstrate in different ways to boys, especially when they are young and in my experience this meant that teachers and other professionals do not have the information to help her. It also meant that I was left with feelings of guilt and self doubt about how I as a mother did not recognise signs from an early stage that my daughter was ‘different’.

During the process of her diagnosis I made sure that I researched as much as possible about autism, in particular Asperger’s and I was introduced to the works of Tony Attwood. Tony is amazing, his books are clearly written and as you read through chapter by chapter you feel yourself ticking off a mental check list because he has such a clear understanding. http://www.tonyattwood.com.au/tony-attwood-s-profile A book that I found particularly helpful was :

As a result of her diagnosis and for other various reasons my husband and I decided that I would plan my work around her and home educate her and so for the last three years we have spent a huge amount of time together. This has been a huge learning curve for both of us and I learn, from her, on a daily basis. She is inspirational, she is totally amazing and yes she is the best actress I know. Her acting skills were not something that I tuned into to begin with and in fact I will admit that it took me about a year and a half to click on to what was happening in its full extent.

One example of her acting skills is her introduction to coffee. She started to ask me if we could go the coffee shop and if she could have a coffee. We talked about coffee and how its not good for you, how it is a more grown up drink and after weighing up the pros and cons we decided that an Iced Latte would be a good place to start. My daughter, like most young girls with Asperger’s becomes fixated with things, however I am lucky enough to say that she is also very intelligent and was able to limit her new caffeine addiction to no more than 2 a week. She would become a new person with her iced latte sat in front of her, sipping it like a twenty something on a break from her college work. Her ability to adapt like a chameleon to her new surroundings were astonishing, after all a coffee shop is a pretty noisy, crazy and sensory overloading place. In my mind I was trying to think like her and see what had brought about this latest craze.

Then one morning as we were talking through the latest programmes that she had been watching she mentioned Friends. Ah ha ! My brain kicked in and I too watched an episode or two with her. There it was, a bunch of friends who enjoy life, have a great connection and enjoy plenty of laughs despite any issues they face. Who would not want to try and emulate that To date she has watched every episode of Friends at least seven times and there are 236 episodes.

The more I observed her and the emotions she displayed I realised that Friends was not her first attempt at mimicking and copying others to fit in. Without wishing to expose her to the world, I realised that I had witnessed her acting skills from as young as the age of 4. Those of you who have Asperger’s or if you have a family member with Asperger’s will be all to aware of the difficulties of being 4 and not fitting in like the other children at school. Maybe your only option is to act !

One series in particular that she started watching suddenly resulted in her swearing. It was unlike her and it wasn’t meant in a rude or offensive manner it was purely her copying a comedian who was travelling with his father and who both occasionally liked to use the odd swear word or two. My daughter loved the unique connection between the young comedian and his older father. Something about it made her want to copy it, if only in part.

As I have mentioned in my previous blog Florida plays a big part in our lives, so much so that on one holiday my daughter tried to tie herself to a palm tree so that she would not be able to leave. So it was no surprise that she should be attracted to the fantastic series Fresh off the Boat. https://abc.go.com/shows/fresh-off-the-boat/about-the-show After all the characters face everyday challenges in order to fit in with the people surrounding them with their issues mostly due to the cultural differences. Eddie, the teenage son, in addition also faces the pressures put upon teenagers to fit in to society and is a great actor.

So after watching all the available episodes my daughter started to ask why her nose is not like anyone else’s in the family. She then announced that it was because she is Asian. My daughter, I must point out has blonde hair, blue eyes and is fair skinned. This is where she started to bring in some of Eddie’s characteristics and develop a love of Hip Hop, she would spend time listening to Hip and Hop and learning all about the industry, quoting facts and information at an alarming rate. She was adamant that she was Asian and had an ability to identify with this character. It was frustrating, for us all, my 16 daughter would say to her her “Look you are not bloody Asian”, but she remained steadfast. The obsession was not causing harm to anyone it was just concerning for those of us around her who felt that she was opening herself up to bullying and criticism.

Then one day the sh@t hit the fan ! Like most people with autism she hates, no she loathes the supermarket. It has far too much going on, we have lights, sounds, smells, a whole host of sensory issues that are enough to send her running back to her bed to hide under her duvet and so for her she tries to steer herself away from this chaos and chooses to take her mind somewhere else. She does this by getting my attention and asks me repetitively about something. For others they may see it as her being confrontational but it is her tactic to distract herself from her surroundings. On this particular day she made her focus about asking me if she could get brown contact lenses to change the colour of her eyes. As we stood in line waiting to load our shopping on to the conveyor belt the line of questioning became louder, so much so that I could see that it had attracted the attention of an elderly lady who was loading her shopping in the aisle next to us. My daughter was totally unaware of the lady and nor was she aware that she was taking up some small space which meant that it was harder for the lady to load her shopping. The lady asked my daughter to move, but not in a particularly polite way. For my daughter this was a red rag to the bull, she huffed and she puffed and she turned to me and said “This is all because I am Asian, this is abuse”! To which I had to reply “but you’re not Asian are you”. I have never witnessed such utter confusion upon an old ladies face who probably thought that we were as mad as a box of frogs.

My immediate response was that of leaping to the defence of the old lady, but since then my daughter and I have talked through this situation many times and in fairness to her my daughter saw it as abuse.
I am in the process of helping my daughter understand what is right and wrong behaviour, what is acceptable. It’s tough. The old lady did not demonstrate manners, and she certainly did not take time to think through what she was witnessing. Many people these days have mental health and or other health issues and the people who class themselves as ‘normal’ should take sometime to review their own behaviour. So you see the admission from my daughter that she is not Asian means that she is starting to understand that she has this tendency to search for characters that she feels society accepts and to act out these characters. Sometimes it’s nice to escape for a while into a fantasy, I deny any ‘normal’ person who doesn’t we are all influenced by fashion, the media, TV programmes etc. What she has learnt is that you can take parts of a character and adopt it but when it comes to your physical appearance that’s a harder task in hand.