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Blog and Podcasts about Autism


Funeral candlePart 1
Once everyone was awake at 3:30 and prepared to leave, my stimming increased and my thoughts were even faster than before. I was desperately trying to go over a written and mental checklist; because once I left there was no turning back. I read my list ten times because I just couldn’t take it all in. Both my own and Adam’s anxieties were through the roof, as we travelled to London. We were worried about not being at the Embassy on time and not being seen by them as I had no idea how the system would work. We were worried about traffic, we were worried there would be delays and I would not make my flight and I was worried about how I would handle the stress once I arrived and on my own.

Driving in and around London is more than nightmare. This is not helped by a SATNAV app that lies regularly, mistaken turns and plain old London traffic. It seemed like time was moving faster and faster and my appointment time was rapidly approaching. We were only a few miles distance from the Embassy, but many more minutes in actual travel time. This coupled with the worry in the back of our minds about terrorist activities near the embassy and road works really didn’t help our situation. I did manage to arrive, in the end, only five minutes late and found myself running towards to embassy as I was concerned they wouldn’t see me if I were any later. When I got to the front my heart sank as what looked like several hundred people were all standing in a queue waiting to enter the embassy. I said to myself there was no way I was going to make it through that queue and get my passport in time for the flight. It almost broke me, I felt physically ill. However, as I walked closer to the front I realised it was a queue for non-US citizen and the area I needed to be in had a queue of three people waiting to enter security. I showed the staff my appointment letter and ID and I was ushered through. I was elated as I knew then I wasn’t too late. Now to get inside and get this bad boy processed and I would feel much better. Once I was inside, I was seen fairly quickly, say less than 10 minutes. I gave them my documents, showed them my airline ticket for later in the afternoon and off it went. To be fair it took longer to pay for the thing than to process my paperwork overall. In less than 45 minutes, I was walking back out of the Embassy with my US passport in hand ready to head to the airport with plenty of time to spare. My main stumbling block was now cleared.

The children were amazing and made the whole travel issue less stressful to some degree. They were patient and happy as long as their technology was working to keep them occupied. For me though, as I reached each step to move forward towards getting back home, there was only short relief before the new worry came into my mind. The anticipation of all that was coming was wearing me down. Even at this point I hadn’t slept in over 28 hours, hadn’t eaten over 48, hadn’t drunk very much water and was emotionally and physically overloaded. I knew though I had to just push through it all and make it to my destination.

As we arrived at the airport, I knew I was losing my rock. Adam was staying with the children and I had to pull up my big girl boots and do this on my own. I felt so incredibly alone as I walked away from them all, after my goodbyes. I cried as I went towards to entrance of the airport trying to make sure I didn’t turn around because my heart just couldn’t take it. It felt like very much like I did over 21 years ago when I left my family in the US to move to England to be with my, then, boyfriend Adam. It felt like I was in some way saying goodbye to someone I was and eventually going to return a somewhat different person after this journey. You can read about my experience and blog about Special Assistance at the airports on both sides of the “pond” during my travel journey (HERE)

Throughout my first flight, I just kept thinking about my grandmother. How was I going to feel about seeing her? What was expected of me? How were my immediate and extended family going to react to the situation as well as seeing me? How was I going to feel about seeing my brother for the first time in 15 years? Meeting his wife for the first time? Seeing my mother after so long and with such a strained relationship? Seeing her husband, a so called man who has done nothing but make sure my existence was as difficult and horrible as possible? How would I feel being under their roof? What were the plans? How would I deal with any family dramas? What would be my escape plan? How would I keep my Autism a secret from my mother’s husband? Had my mother actually kept to her word and not shared my information? Most of all…how was I going to allow myself to be vulnerable in a room full of emotional vultures? My lack of trust of my family could very well stop me getting my chance to say my farewells to an important matriarch of our whole family. And would I allow it to happen? I really just didn’t have the answers. I wasn’t going to be prepared and I truly didn’t know the alternatives.

My long 9 hour flight to Dallas went quite fast. Once I gathered my thoughts and connected to the internet, I was able to speak to the world and it helped. I was able to talk to Adam most of the way and the remaining time I was chatting to my cousin Bert, my Brother Jeff and his wife Pat. I dared to allow myself a little bit of excitement at being able to spend some time with people I loved and cared for, but the reasons for being there were always going to over shadow any pleasure I might get from their company.

Dallas Airport, brought with it even more stress, not to mention the long wait until my final flight. To make matters worse, my overstimulation, lack of food, sleep and emotional turmoil, added to my physical weakness. As I had my gallbladder removed in 2016, which you can read about in this blog (HERE), I had experienced a change in my digestion. This coupled with my ADHD medication meant that not only would I not be hungry, should I choose to eat I would feel ill. To add to this sadly, even if I forced myself to eat out of necessity, the side effects of suddenly eating after, what was now, just short of 3 full days would be rather unpleasant and ill-advised during my travels. I was now alone and in a noisy highly over stimulating environment, emotionally feeling lost and unable to think clearly. I had been awake for over 40 hours by this point and it was a scary place to be. From my experience thus far at the airport, no one had a clue about helping or dealing with people with Autism and I had no way of contracting anyone for support my side as there were no payphones and it didn’t occur to me to use the free wifi. I sat in silence in a quieter, slightly darker area near my gate waiting for my connecting flight. Again thoughts turned to my grandmother. Did she really know how much I adored her? Was she hurt I couldn’t see her more often? Was she in pain when it all happened? Did she know how much I loved her and did I show her enough? I just kept playing memories over in mind, as I wished time away so I could finally try to get some rest.
Once I arrived at my final destination, more worries kicked in. I realised I had given my mother the wrong details about my flight and was I going to be stuck waiting at the airport, alone and unable to get hold of her. It had been so long since I had seen her and would I recognise her and how would the conversations go? Luckily it wasn’t too long before she arrived and we had a brief hug and off to her house we drove. The conversation was of a general superficial nature, which is often the case with my mother. You know the expected, “How was your flights? How was the weather?” and so on. But to be honest I wasn’t really in a great mood to talk. She held my hand for a short while, which drove me a bit crazy and made my skin crawl, but I knew I needed to let her do it for her, it was her mother who passed away and in my own way I was trying to be there for her. It was difficult to try to explain things to her about how I was feeling. Not because I couldn’t describe it, but more because I know she has never taken the time to understand my Autism. I think even to this day, she really doesn’t fully believe it, nor has she tried to take the time to get to know more or read more about it. I guess on some level it is because she has always seen me as she has and with a late Autism diagnosis, she just really cannot get her head around seeing me differently. I think too that if she accepted it, then on some level she would have to accept responsibility for her treatment of me, but that is a whole other conversation. Explaining Autism to her is a bit like trying to explain coding a programme to someone who has never used a computer. She knows what a computer is, but really had no idea how they truly work and why. Our superficial conversations didn’t last long before the start of the family drama was mentioned. It was a fear of mine to walk into a situation of those concerned about money and who was paying for what and when. It was a bit like a cat where their cackles go up and once I started to hear how those who I love and care for were being treated by other family members, I quickly remembered why I moved 5000 miles away. At times that doesn’t even seem far enough. But there I was listening and anticipating how best to deal and react to it all. I also managed to try to find out the plans for the next day and what the general expectations might be.

On our way back to her house, which was at least another hour from the airport, we had to stop off at the shops to pick up some personal essentials. This was horrible for me. Although it was well past midnight and the shop was almost completely empty, I was still trying to recover from my travels. My tiredness, lack of food and sensory issues were kicking in big time and as I walked through the shop I was feeling way off balance. My positional vertigo was apparent and walking was very much like trying to walk on a waterbed. The lights in the store were incredibly bright, I had yellow haze around the outside of my vision and I felt like I may be sick at any moment. I tried to explain to my mother my sensory issues, but she just couldn’t understand. Nearby there was someone cleaning the floors with a very large machine and it was extremely loud for me. My mother hadn’t even noticed it until I pointed it out. In the end I had to rush to get my things, with my ears covered and now an even bigger headache. All the while, hoping I didn’t collapse before I made it back to the car.
As we started back again on the journey home, my mother dropped the bombshell that my step sister and her family would also be staying at the house but out in my parents travel trailer. She knew I wouldn’t be pleased as she and I aren’t the best of friends. It isn’t that I dislike her. Truly it isn’t, however growing up together we were never the best of friends, although we shared a lot of very difficult and harrowing times together. Again much like the mention of the other family drama, this new situation was not going to make my stay any easier. This coupled with the anticipation of seeing this awful man who I hadn’t spoken to or acknowledged his existence, in over 8 years, was just adding more stress on me which I was unsure how to handle. It was only the thought of having an ally, my older brother Jeff, at the house that gave me any sense that I may be able to cope with this new situation.

On the way to the house, my mother called her husband on the speaker phone to let him know we were almost there. In the background we heard my brother, who was expected to arrive near the same time we were due back, and my mother commented to me she thought she heard his boom of a voice. She spoke to her husband for a few seconds and the feeling of dread filled my stomach. She then said, “ Was that Jeff I heard in the background?” Now any normal decent person would have just said, yes, he just arrived. But as I said before we aren’t dealing with a “normal” person, this man is a subclass of his own. He replied,” Well you heard him right? Who do you think it is?” all said in a very annoyed tone. Her reply was that she was asking to make sure. I saw nothing wrong with the question, but it did confirm to me that his nature and horrible need for control, superiority and submission had not ceased, not one bit. I could feel my heart pick up pace and I forced myself to bite my tongue. It took all my strength not to say to him, stop being such a d*ck and just answer the question, you pr*ck. The call ended fast and I prepared my head for the arrival into the war zone.

When we got to the house, my brother and his wife came out to greet us. It was such a great feeling to give that big old boy a hug and to finally meet his wife Pat. Both my brother and his wife are almost the opposite of me. They are very religious, ordained ministers in their church and I am an atheist. For me this was never going to be an issue as many years ago I told my brother that what he chooses to do is his thing and my choices are mine. I would never push my lack of belief on him and didn’t want him to put his onto me. And over the years we have not had an issue. I truly have no problem with people who have a belief in any kind of god. If people feel they need that belief to get them through hard times or need to feel that someone outside of themselves controls things for them that is their choice. It isn’t mine, but each to their own, I say. I am actually happy that they have their faith if that is what keeps them grounded and happy. It just isn’t for me. But I thought it was sweet that on my journey home they felt the need to pray for my safe journey was still a nice thought and gesture, even if I don’t believe. It was the love from their hugs and their presence that gave me the strength to see the man that was going to make my short visit just that bit more difficult.

Once inside the house I saw Steve, my mother’s husband, said hello and only looked at him for 1 second. It actually made me feel physically ill to see him there, but I just acknowledged he was there out of civility and then ignored him. By this time it was 1am on the 11th of May and 7pm in England. I had now been awake for 58 hours in technical terms, but the time travel really was messing with me. I still hadn’t eaten since Monday the 8th and was completely wrecked. All I wanted was a bed and some sleep. This was not however, going to happen until my mother was done showing me all the new additions to the house since my last visit and it could happen quickly enough for me.

Once I showered, which was quite painful and exhausting with all its simulation and my even more overly intense sensory issues, I felt ready to relax. However, my brother and I were excited to show each other our CPAP machines, as we both have obstructive sleep apnoea and all our gear. My mother watched in the background as we were like kids at Christmas, showing each other our “toys”. She started to laugh when I said, “We are bonding over our inability to breathe while we sleep. Aren’t we cute?” Even I chuckled but enjoyed this moment of calm before the storm. I knew however, both my body and mind were begging me for a bit of rest, which was difficult with the added jetlag on top of it all.