First written on 4th August 2015 & transferred from old blog site
It has been a while since you and I fell out. Today you made me angry even though I was not your target. You see my daughter is 6 and she is autistic. It makes her day to day life extremely hard at times as she attempts to navigate a crazy world and find her place in it. It’s not helpful when you come along and add to the mounting stress she feels. I know you often tag along with your friend autism, you seem to be closely connected.
We had a lovely play date arranged with some close friends in a park we often visit. The school holidays throw her out of her comfort zone but she copes really well with planning. It should have been a lovely day. Plan we did, prompt we did, talk it through and off we went. Some days there just isn’t enough planning in the world, you just seem to grab her regardless. My beautiful girl was crying, screaming and kicking the seat in the car. She hit her little brother, she threw stuff she could get hold of. Refusing to get out of the car we sat there, her crying and her brother unsure whilst I decided on the next best step for all concerned. You had her, you were winning.
I wanted to yell and scream at you Anxiety. I really did. I wanted to rip you out of my daughter and stamp on you a million times for what you do to her. I wanted to swear at you and boy did I have some select words just for you. I wanted to cry, truth be told, because I am exhausted, overwhelmed and often feel out of my depth trying to do what is best for her. Trying, as a parent, to make her world as easy and understandable as I can whilst at the same time keeping her safe. I have to think with/about/for her 24/7 and when you decide to stop by it is a hundred times worse because she becomes ‘flighty’. Likely to run at any given chance and with her lack of danger awareness, it is bloody scary.
Instead I wish to thank you, Anxiety. You see every time something like this happens it makes me a stronger parent, ready to face you the next time you decide to gatecrash our lives. You know what else? With my help (and maybe a little stubborn attitude) she got out of the car. She had a few moments on the floor waving and kicking her arms in the air and I let her. Why? Because she was releasing you. She was angry at the feelings she was having. Deep down she wanted to see her friends, to go on the swings, to eat the picnic we took with us. After she started to calm I bent down and gave her a choice – go to the play day or get back in the car and go home. I was calm and fair, she knew either would be OK with me and do you know what, she chose the play day and after a few more minutes calming she had a great time. It was a lovely day after all. You are a pain in the backside Anxiety and believe me when I say I HATE you, I really mean it.
Thank you for attempting to take my daughter down today, you have shown me even at the age of 6 she isn’t going to let you win. She made a choice to put you to one side, remind you that you don’t get to rule her life. She was able to release her feelings safely inside my car and make a decision to keep going. I would say better luck next time but that just suggests I offer you seat on our next day out so instead I will just bid you farewell for today but no doubt you will be back at some point. We will of course be ready for you every time.
There are four of us living in this house. I used to say three of us as we are the ‘physical’ ones but we seem to have an extra one here a lot of the time. Yes, there is myself, Eliza (9), Noah (4) and anxiety (the uninvited and invisible guest that randomly becomes visible, usually at times when you wish it would just bugger off). This year has been a bit rocky, my own anxiety took control over me earlier in the year for a while but I’m starting to feel like me again and that I’m now back in control. Eliza’s anxiety is usually around social situations, especially in unfamiliar environments but there are random times it just consumes her as if it’s just reminding her it exists. For nine years of age, she handles her emotions pretty well and refuses to crumble when it makes an appearance. It can be tricky in our house, Eliza and I can either bounce off each others anxiety and get by or we can feed off each others anxiety and have a day where we need a little space from each other or more structured days where we both have the same agenda as much as possible.
Eliza wasn’t always anxious, she was quite an independent, feisty and confident child. Until regression dropped by (another uninvited but slightly more visible guest) and took away her speech, some of her fine motor skills and reversed a lot of her skills in general. She had to relearn how to hold a spoon, how to hold a pen and draw but most of all she had to learn to be Eliza again but without her words and that made her extremely angry and frustrated. We relied on Makaton sign language for communication and through this she started to make sounds with certain words that she signed and she’d often sit in the corner of the room with her cuddly toys, whispering the noises or letters she could say as if she was practising what she had gained back speech wise. It took a few years for her speech to return enough for the pediatrician and speech therapist to stop documenting her as a ‘non-verbal’ child. I can remember on a few occasions that if she pronounced a word slightly wrong it really made her anxious. She’d be very cross with herself and get upset. A year ago she watched a video of herself when she was younger. She was signing animal names and making the noises that they make. Back then she had around 10 spoken words. She looked happy to watch it but anxious and then she told me that she is scared her words will go away again. Sadly nobody has a crystal ball to see whether regression will strike again or something else but she’s doing amazingly well for a girl who had to wait a long time for those words and skills to return.
At the time her speech started to return, her anxiety suddenly rocketed. Everyone assumed that as she began talking again, her anxiety would decrease but it did the opposite. We became quite housebound for over the next year or so outside of school hours. Supermarkets were an absolute no go area, she just couldn’t cope with people, noises, busy places, sounds, smells…. complete sensory overload! Suddenly she couldn’t even face the cinema, soft play, parks, restaurants….. anxiety was taking control. I often used to think that it stemmed from the speech returning, the fear that she’d lose the speech again so she was shutting herself away from the world and guarding what she had taken back from regression. Now she is old enough to talk about it (when she wants to) she was able to give me her own thoughts…. “I didn’t like busy noise…….. too many people……. my words get messy…. they might laugh at me because my words don’t always work…”
That fear and anxiety that people would notice how she said things, how she struggled to pronounce some words. How she needed processing time to answer questions and they might think she’s ignoring them. How she sometimes doesn’t know how to answer so you get a scripted reply from a TV show or a plain yes or no. How they look at her and see a child that is of certain age but her language ability is that of a younger child’s. That pressure to be what other people expected was already taking up space in her mind. Eliza is an extremely intelligent child with a wonderful and adventurous personality but in the past she has often been told she can’t do things by teachers, pediatricians etc. It’s not that she can’t actually do things, it’s that they assume she can’t and therefore don’t even bother giving her a chance. But they tell her she can’t do stuff and that impacts her anxiety and her confidence partly as she’s unsure whether they are correct but also because she feels wronged by their decision. She may well not be able to do whatever it is she wants to try but at least let her try, that’s all she wants. Anxiety and her autism diagnosis were used on more than one occasion by certain people as an excuse to why they made decisions for her instead of with her. Eliza was also bullied for a while, both emotional and physical attacks. Her bully was a huge factor to her increase in anxiety to the point she’d have a panic attack in the car and couldn’t breathe if we even drove near where he was. (And sadly her being bullied was not taken very seriously by school at that time and was pretty much ignored).
Despite anxiety taking control of Eliza a lot of the time, she was still able to do ballet lessons, street dance, trampoline club, Rainbows (part of guides/brownies but for younger girls), after school cooking class and sports group and, possibly the best thing she ever did, equine therapy. So many people wrote her off, used her anxiety and her autism diagnosis as an excuse or simply went ahead and made decisions for her so we found a bunch of people/activities that welcomed her (and her anxiety) and allowed her to be herself and through them she gained confidence, pushed her own social boundaries and comfort zones, learnt social skills and improved her speech. Eliza was changing and finding her place in the world and she was starting to take control of her anxiety.
We moved house a couple of years ago to a different County which meant new area, new people and places, new school…. Lots of preparation went in to the move and she’s really changed since living here. We are lucky to live in an area that is close to a forest so we see lots of wildlife and have plenty of open spaces but we are less than fifteen minutes away from shops and town by car. Her School is amazing and she is thriving there. Reading at age 10-11 years, working hard in all lessons, learning to play a brass horn and the piano, taking part in sporting events and art shows. They just ‘get’ her completely. They support her greatly but they also allow her the independence she needs and most of all, they allow her to be Eliza. She still has anxiety at school although nowhere near as often as she did but she can get past it quicker with their support and understanding, she’s happy and comfortable enough to show them she is anxious but also able to take back control.
The last twelve to eighteen months has held a lot of changes for Eliza. Anxiety remains but rarely gets to show itself as she’s so used to it now, she’s able to distract herself or go have quiet time somewhere. Even on the rare occasion that anxiety starts to control her and she gets quite loud, tearful and stompy, she battles through it and attends whatever it was she was going to anyway. She won’t let anxiety beat her. She’s enjoying trips to the cinema again as well as the theatre for shows and plays. She’s loving being outdoors and has a huge list of places we can go, the boating lake is one of her favourites (which is crazily one of my least favourite places because, well, I just hate boats and lakes/rivers/seas/oceans….. but we go because she likes it there and she’s yet to ask to go on a boat lol). When anxiety does start to niggle at her, you’ll find her at the top of a hill, top of a climbing frame or the highest floor of a building where possible. This is how she copes. She likes the space and the height so she can look at her surroundings and calm down whilst deciding on her next move. Even shopping is back in play although she absolutely detests a couple of places that have very narrow and highly stocked aisles, she has a few she enjoys visiting.
As for me, my anxiety is fairly under control. I still have days where it seems to have a date with depression and they come along in tag team style and kick my arse for a while but I keep going. Therapy has helped and I remain on medication for the time being. I talk to a select couple of close friends about it which helps. I won’t go in to the long story of personal details of what caused my anxiety but I’ll share how it felt. Earlier in the year anxiety took complete control. I was having panic attacks, couldn’t walk in my own town without feeling that my legs were on fire and my vision blurring. I felt sick leaving the house and even going to a friend’s house made my legs shake. Even walking my son in to nursery, I felt like I’d pass out. A heavy-set feeling sat constantly on and in my chest and my heart was racing. I denied it for a while but it persists until it thinks it’s winning. Anxiety, oh how I hate you!
Self care is important, it really is and it’s something I have ignored for far too many years. I’m a masker. I hide behind a smile that is believable but fake. But I got away with it for so long it became the ‘norm’ and I forgot to actually look after myself. Instead, I filed everything in my brain to be sorted another day. But I never sorted it, I just added to it…. and added to it…. and added to it until my brain was full of things that I either didn’t want to think about or didn’t give/have time to think about. I couldn’t hold it in anymore and it was making daily life incredibly difficult. After reading some inspiring words that a friend had written about their past with anxiety, I made myself an appointment with the GP and got the help I needed and had avoided getting for so long. I didn’t want to notice my anxiety, I didn’t want to let it in. But there it was, that uninvited guest booking itself a room in my head. Anxiety wants to win. But I’m not going to let it.
Nowadays it’s a tug of war relationship, some days anxiety slightly leads until I pull it back over the line again. The way I get through it – I keep that hot tingly burning feeling in my feet as much as possible. When my legs start to burn I know anxiety has picked up the tug of war rope and fancies a test of strength. This is when I distract myself and find something to do (walking or rock painting are winners here). If the burning feeling gets above my waist level, it’s time to go home because anxiety is pretty much setting fire to the rope at this point and I’m losing my grip. Sometimes I just need to be home and have that safe ‘made it’ feeling and have a cup of tea. Sometimes I need short nap to regain my energy for the next test and have a cup of tea (Hey, I’m British. It’s what we do. Tea is the answer to everything!).
***This started as a Facebook post here but a few people messaged and asked for it as a blog so here it is***
Recently I ended up in a rather heated discussion in an online parenting support group about autism. In particular the difference between high and low functioning. Now first of all, I’m not a fan of the word ‘functioning’, I detest it but as this quote fit what I was trying to explain at the time (plus some of Eliza’s own paperwork describes her as ‘low functioning’) I’ll use it just to explain my point. The photo below is of Eliza and Chris from Autistic Not Weird. Beautiful photo isn’t it? Eliza’s diagnosis on paper is written as “Autism Spectrum Disorder and moderate-severe learning difficulties”. On more than one report she’s also described as ‘low functioning’. Chris has a diagnosis of Asperger’s (And yes, I have his permission to post this photo etc).
The heated discussion I ended up in was a post about varying levels of autism, where people ‘sit’ on the spectrum as such but a small bunch of individuals were harping on about if you are high functioning you should lose the diagnosis label as you don’t deserve it. One lady in particular, I argued with at great length after she announced on the post that any child or adult that was considered severe autism or low functioning should be institutionalised so the Country could save the “wasted money given to the retards who don’t know what to do with it anyway” (Her words!). I was so angry with the whole conversation. The use of the R word alone was down right degrading and disgusting but to suggest those that are lower functioning should be locked away? And those that are high functioning should no longer be considered autistic?
Every single individual is different. Every single one! But high functioning does not mean that person doesn’t struggle. It does not mean they need no help or support and often they carry on unsupported because they are expected to which is damaging. Have you any idea how hard it is to be pressured in to being ‘normal’ because you are high functioning and that means society assumes you have no troubles or issues? And should you dare to have any issues, it’s assumed that you either need no help or that you are faking it or ‘not that bad’….. Let’s flip to the other side. Low functioning. This does not mean lack of intelligence, lack of understanding or that these children and adults are less than others. Eliza reads older than her years, is learning piano and brass horn, makes hilarious jokes and is very academically able with the correct support in place. But according to that person in the group, we should lock her away because she was discussed in a report as ‘low functioning’?
I’ll stop here because reliving that argument is making me angry and ranty! As much as I detest the word ‘functioning’, this quote sums up what I was trying to get across in that group. But I’ll just add that by no means is Eliza ‘low functioning’. It was a term used by certain individuals who chose to write her off at a young age rather than wait and see exactly what she was capable of.