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Blog and Podcasts about Autism


Funeral candleI only managed 2 hours sleep before I woke again, feeling strange in the new environment. Everyone was a sleep, but my mind was still unsure what it was meant to do and how to shut off. So, I thought American TV might give me a chance to sleep and two hours later it didn’t fail, I went back to sleep for another 2 hours. I was then startled by my mother waking me up for breakfast. It really felt odd. It brought back memories of me as a child being told to get up and get ready for school at stupid o’clock. It reminded me of my mother and her “ I won’t tell you again Jennifer, it is time to get up,” and my own private thoughts back then of ,”Well good then you won’t disturb me anymore I want sleep.” But this was not high school and today was not just a normal day.

The smell of breakfast was slightly nauseating as well as metaphorically hard to swallow. I managed to have 1 egg, a couple pieces of bacon and half a slice of toast, while sitting with this group of people I barely knew or recognised. Making idol conversation was a struggle as my head was still not in working order and my energy was low. To be honest I was prepared not to eat as it stuck in my throat the idea of eating food, which Steve had in any part in providing. I had to justify to myself that my mother cooked it and I needed it to help make it through the next few days of what was to come. What the breakfast time did though was give me a chance to talk with my sister in law and try to get to know her more.

Getting myself ready to attend the viewing was again tough for me. None of my things were where I wanted them to be. I felt unprepared mentally for the onslaught of social activity that I was going to be thrust into and knew that both judgements on me and my presence might cause some issues. My brother though was amazing and so was Pat. They both assured me I would be ok and as they are both older than me, they both knew about my Autism, and my sister in law also previously worked with children with disabilities, I felt comfortable with them both and safe to allow myself some vulnerability in my situation. To easy matters, it was great that my stepfather and brother went in a different car to my mother, my sister in law and myself. I used this opportunity to find out more of what was expected, the plans for the day, who might be there as well as talking to Pat about my issues, within ear shot of my mother so that at least she may have somewhat of an understanding at what I was dealing with. She was a captive audience but knew she would never actually ask anything about it all or even comment on what I was saying. I wasn’t trying to make it all about me, as it was her mother, but I did want her to be aware of why and how I may struggle. My mother has always been much closed off emotionally and to some degree it was actually nice to see that she may actually showed some kind of emotion and empathy. It was something I was not used to from her and quite foreign. As we got closer to the funeral home, I could feel myself getting more and more overwhelmed. It was hard enough to control myself in my guest room at the house, where I cried alone several times before we even set off, but seeing the building where I knew she was lay, just felt like waves of emotions that were already about to overflow. It was like filling a balloon with air and it was soon going to explode into pieces.

As we arrived and went to enter the building I saw my first relatives, the first of many to come. It was my Aunt Margie. She looked so much older, so vulnerable, so tired and like someone had taken away her light. For me my Aunt Margie was like a motherly figure. I looked very much like her and people had always mistaken me for her daughter with I was with her. She always made me feel loved, like she wouldn’t judge me and always listened to me with so much caring and empathy and to see her like this really hurt my heart. As I prepared to hug her and looked into her eyes, I started to cry. I couldn’t hold it in as hard as I tried. It was like trying to stop a damn from overflowing, trying to stop an avalanche, trying to stop rain and I was powerless to control it. I didn’t know what to say? What do you say? I just said, “Sorry for your loss.” I was unsure in my head if I was right or wrong, because it was my loss too, but it was her mother. She was the eldest of my grandmother’s six children and I knew she was so very devastated by her passing. I tried to offer help to her get inside as I didn’t know how else to move on, what to say or what to do. How do you have a conversation? How long do you hug for? What am I not supposed to say? What should I be asking? Aunt Margie is the mother of my cousin Bert and when she said she was happy to see me I felt it. I was happy to see her, however distressed I was by the circumstances. I greeted my Uncle Dago, her husband and helped them both inside. As I walked in the smell hit me like a cricket bat. It smelled like chemicals but also full of pockets of various perfumes and aftershaves. The pain in my head started with immediate effect and I tried to sooth myself with my spinner ring so I could stim discreetly without detection. My ring was going to get the use of a lifetime in a matter of a few hours and between my ring, my brother, my cousin Bert and my sister in law Pat, they were my only true forms of comfort I knew I could rely on.

As we went past reception another Aunt greeted my mother in tears. I stood by awkward like a teenager again, unsure of what to do, where to go, how to react and what to say. It was horrible feeling so unsure of myself and yet trying to “appear” open to yet another relative who I had become estranged. However, when this new Aunt greeted me, her words confused me and sentiments felt disingenuous. I was expecting at least a “Hello,” however I was only greeted with, “Love is an action and I gave up my room for you,” as she leaned in to hug me. It felt like Julius stabbing Caesar in the back. Then she told me to take care of my mother and stepped away to hug my brother. I was taken off guard and really unsure how to take it. I mean what do you say? I’ve not seen this woman in possibly 19 years and this is her greeting? The last time I spoke to her was when I called her and we discussed at the time that The Bear (our youngest) may have Autism. Then I never heard from her again. So needless to say this, of course, was not really what I was expecting. I was unsure if she wanted a pat on the back, a gold star or just trying to assert how saintly she thought she was in comparison to me, as she too is highly religious and knew I am Atheist. Who knows, but I just awkwardly moved aside and waited to move on the next social challenge. However, as we moved towards the viewing room and had greeted my estranged Aunt and then her husband, she repeated her comments, just to ensure I took it in. At this point I was unsure if I was meant to make a comment or profusely thank her for allowing me to stay at my own mother’s house, but I just again made no comment and moved along to the viewing room. I later found out, two of my Aunts were planning on staying at my mother’s house during this time as my mother hadn’t expected neither my brother nor I to attend the funeral. However, I really don’t see why it was even mentioned at all. It made no difference and both were perfectly capable of affording places to stay.

My sister in law, Pat, during this time remained steadfast and I could feel her close to me which gave me some comfort as I felt so alone in how to tackle these situations coming thick and fast at me. Once we walked into the viewing room I could feel this horrible feeling wash over me. It was extremely bright; there was a large crowd of people, along with an even louder buzz of voices. I just turned to Pat and asked her what I was meant to do? I didn’t know. How do you know? What am I mean to say? Who am I mean to speak with? She just said to go up to see my grandmother. I was screaming in my head, “I am not ready. I can’t do this. I need Adam. Oh my god, how do I do this?” Another cousin came and greeted me before I got to the front and thanked me for coming all the way from England and she was happy to see me. It was nice to hear, but also prolonging my internal agony. I could feel my Pat at my side and her hand on my arm helping to lead me forward to the real reason I flew all that way. But before I got there, I saw my mother and someone else standing at my grandmother’s casket. I watched my mother’s emotions crack. Her emotional barriers truly failed her and it was one of very few times in my life I had ever seen her vulnerable. It hurt me to see her so sad, but gave me hope that on some level, she was able to show some real feelings about someone other than herself.

As I slowly walked up the view my grandmother myself, I caught sight of her for the first time; it was like looking at the sun. Her image will forever be imprinted in my mind. I was so overwhelmed I almost collapsed. It was too much emotion to physically take. I burst out in tears and struggled to breathe. Pat was at my side trying to comfort me as each breath was a struggle between the tears and sobbing. I turned to her and remember saying…” It is too much…I don’t know what to do with my emotions…what do I do with this? I can’t take it…it hurts too much.” I became almost hysterical with my crying and sobbing. I couldn’t breathe, which also made me panic and I realised my cousin Bert’s wife, Becky, was also by my side trying to help me calm myself. Then my mother comes over and I just remember everyone telling me to breathe. My mother started to tell me to focus on Adam and the boys, but it just made things worse. Everyone touching me made me worse. It wasn’t their fault; they were doing what Neuro-typical (muggles) do to comfort each other. All the while I’m yelling at myself in my head to breathe and get a hold of myself. It was so hard to accept that I was vulnerable in the presents of so many people that I didn’t trust. But I had no power to really make a choice to be any other way. I tried to push my feelings down and eventually after a while, I had a very short and very temporary victory. Still highly emotional, oversensitive, overwhelmed and trapped with tons of people who had no real meaning to me, I sat down to try to gather my thoughts and prepare to see other relatives. Some I cared for, some less so, but all there to get their chance to say goodbye to an amazing woman.

I decided I needed a bit of a sit down to steady my nerves and try to process what was going on, however it was a bit of a losing battle. I sat with Pat and she was still being just amazing, really helping me to deal with everything around me. I even talked to her about the odd comments my Aunt made and asked her opinion if I was reading it wrong or being oversensitive, but she too seemed to agree with my analyses of the comments. As I turned to actually look around at people, I noticed some familiar faces and one in particular that lifted my heart. Cousin Bert was sat with his beautiful family smiling over at me. I jumped up and decided to pester and greet him. We have grown quite close over the years and really, to me, more like a brother than a cousin. He has always kept me in the loop about issues relating to our grandmother and also gave me the greatest gift of my last video call with my grandmother during her previous poor health situations. He gave me my chance to see her face, to tell her I love her, to see her happy and pleased to see me. It is a gift I can never repay but will always be truly grateful to have had. I was also aware that he may also have felt hurt that I didn’t stay with him and his family during my visit, but he knew and accepted how thing had to be. It was good to be sat with others I trusted and felt safe with. I introduced him to my sister in law and reminded him of my brother, Jeff, just paces away. We passed some small talk before getting down to how I was or was not coping in the village of the damned, at my mother’s house. We even managed to have a few laughs and giggles to ourselves about private jokes, which was almost giving me a bit of fuel in my social tank to help carry on. I went off again to greet other relatives as required but after a short while found it was all just getting too much and I needed a quiet space to gather myself together. As Pat and I went off to find a “quiet room”, I was again confronted with the past and another step sibling, for whom I also didn’t have much time or affection for. He was the son of my step-father and as they say the apple doesn’t fall far from the tree. He, too, carried the ar*ehole gene through and through. It was a quick hello and thanks for coming, was about all I could manage. I also met his lovely wife for the first time and realised in an instant that my step-brother was batting way, way, way out of his league, but it was none of my business. I just slowly made my way to a side break room for a break myself.
It was at this time that I got to speak to Pat more about the family issues. Perhaps because I was emotional, perhaps because I was tired, maybe because at that point I just couldn’t take it anymore, I just explained to her why I felt the way I felt about various family members and why I had a deep rooted hatred for my step-father. I know hate is a very strong word and it is not a word I use lightly. In fact, I seldom use the word hate and this in turn gives it the rightful strength of meaning when I do use it. As the silence in the break room continued I poured my feelings out in the open, quickly explaining and giving examples of why I have come to feel so strongly and how the choices of the past that my mother and stepfather made, had such a big negative impact on my life and how I work to counteract those decisions. But this private and sensitive conversation was in the end short lived as each of my cousins slowly worked out where, “the cool kids” were and ended our private chat and calm space.

Within minutes, more cousins, their partners and young children had invaded what was once a little sanctuary for me, but who could blame them? There were cookies to be eaten. Yes, you read that right, Funeral Cookies. I’ve never heard of such a thing and they were in part, part of some of the “family drama” unfolding behind the scenes. This little break was in the end nice. I had a few nice conversations, superficial and somewhat pointless as they were, but at least there was talking. There were a few laughs and a few pictures taken. It was nice for me to “take the mick” (poke fun) at my cousins and try to clear some of the air. It was one of the few reasons I was even able to handle the whole situation.

The break times also gave me a chance to process and reflect on my own personal issues. As these “relative” strangers greeted me, they often made comments about how “pretty” I am, what “beautiful hair” I have and comments about my great accent. It was for me quite uncomfortable. I don’t like attention and also find taking compliments very difficult, as it isn’t something that happened to me very much growing up or even as an adult. I struggle to know what to do or say or where to look. It was something I was going to learn to deal with and fast. Then followed the “You’re from England,” comments. I had to say, “Yes, I came FROM England.” Whether people were able to pick up on the difference between me actually being English and the fact that I live in England was something I really didn’t want to get into, but my literal brain just couldn’t let them suggest that I was actually English, even though I am very proud to be British and have lived in England longer than I ever did in the US. All the social knowledge I had to this point was somewhat failing me, as I really couldn’t snap out of feeling like a socially awkward teen, trying to be invisible and keep out of trouble. It also wasn’t helping me that my vocal volume button has a mind of its own and picks its own level without even a thought for my surroundings or present company. To make matters even more awkward my brother comes pouncing into the break room announcing that I need to come and see a few relatives who wanted to see me, but were on their way out. Much like a teen being told to kiss some strange old unknown relation, I moved into action and did as I was told. From 40 years old to 14 in a split second.

This new, odd hallway meeting really stuck with me. The women I was greeted by had very familiar faces, but their names never once triggered any bells. Similar compliments about my appearance and country of residence were made, as I plastered on a smile and primed myself for the onslaught of old lady perfume, static shocks from their dresses and undesired hugs, which I knew I couldn’t get out of doing without causing offense, but which were offensive to me physically. It isn’t like I can say, “Sorry, I don’t really know you and haven’t seen you since I was this high (showing a height of 3 feet), cannot remember your name and I haven’t heard a single word you said since you started talking 2 minutes ago. So, would you mind if we just give the hug a miss and just, say hello instead?” No, I didn’t think so either. I just have to remember to keep my filter on, keep my thoughts in my head, hold my reactions inside as much as possible, plaster on a smile and just nod and hope it is all over quickly. However, this was not the case. After no less than a couple of minutes of meaningless small talk, one of the lady’s announced to me, “oh I need to have your address.” My brain went straight into action and I said to myself,”…um…why? I don’t even know you.” But my mouth said, “Sure let me go find some paper,” and I curtailed it outta there. I went in search of paper I hoped I’d never find as well as a mystical magical way to get out of handing a relative stranger my home address. Inside my head I was laughing like a mad woman, I couldn’t believe my brain thought of a great plan of escape and moved my body before I had even processed how it was trying to save me. Now that I am off in a fictional search for paper, all along in hope that either she gets distracted/forgets in her old age or I manage to find an amazing escape route out of the building. Oh how I wish I had had a smoking habit right about now, just to have a valid reason to forget to return. As I tried to stealthily remove myself from giving away my personal information, I turned the wrong corner, in this unfamiliar building, founding myself right back with older woman and my brother, who were deep in conversation. I had hoped to sneak my way unnoticed past them both, in my most stealthy ninja sneaky way, when my brother commanded I get my mobile phone to add her to my Facebook. “Damn, I almost made it,” I thought to myself. ” I looked at Jeff and he pointed to the break room where my phone and Pat were patiently waiting. As I went to grab my phone Pat asked what I was doing. To which I replied, “I am getting my phone at add people to Facebook, that I am going to remove again in a few hours,” and walked deflated out of the room. I slowed my return, to that of a sulky teenager, in the hope something would come to my rescue. To my great surprise something did. I couldn’t connect to my brother’s wifi hotspot. The lack of internet saved me. A small victory for me, but much needed relief too.

This social event was looping and twirling in various directions and I had no idea where it would lead me. All the while I had a steady force and fast bond with my sister in law whom I only met 15 hours before. It wasn’t long before I had to make my way back to the family viewing room and become immersed in sorrow and surrounded by people who I struggled to communicate with or have any real connection or bond, in spite of our long histories. Again, I went to greet my Aunts and Uncles/Brothers and Sisters of my mother and children of my grandmother. One such Aunt was particularly hard to greet for me because her past actions and behaviours had had a profound effect on many of the family’s relationships. She, too, had “found the light of God”, but for me, this was never going to hide the darkness that she had in her soul. Having to force myself to quickly hug her and even attempt look at her, felt like hugging evil, looking towards a bright light. I did out of respect for my grandmother, not out of love or caring. I didn’t even want to acknowledge her existence, but that day was not about me, it was about my grandmother and so I did what was necessary, not what I wanted. The torturous action was quickly done and over and I moved away quickly, without looking at her again. It was like time stood still and all I wanted to do was to have the whole thing end and just process all I had seen and heard. I saw a lot of not very nice things, I saw some unemotional people, who I thought should have more or even some emotion and I saw some who really struggled with the whole situation. I saw sadness and I heard a lot of people talking about amazing memories they had of their time with my grandmother. I saw many old faces and many grown up faces, many new faces and one face I will never forget.

When it was finally time to go, having had quick chats with my step sister and her family, saying quick goodbyes and confirmations of gatherings for the next day’s viewing funeral times, we finally made our way leave the building and travel the hour drive back to my mother’s house. I was so drained, so ready for some quiet, so ready for reflection, so ready to sleep and have some space. Once at the house though and after even more discussions with Pat about life etc, I knew peace was never going to find me.