Hi guys! Firstly thankyou for coming to check out my first ever blog! Please bear with me, as this is a first for me! And it's a long one, so I hope you've got a cuppa and a biscuit!
I'm Rosie, I'm a 27 year old single mum to 3 year old Florence. And I also I work part time as a mental health recovery worker. And as you've probably guessed by the title of my blog, I have Asperger's. And I'm going to talk a bit about the journey I've had with understanding my own diagnosis, through becoming a mum.
I'll start with a brief back story, I had a very difficult and traumatic first 21 years to my life due to several diffrent factors, and due to this i wasn't sure I'd ever get the normal life I was so desperate for, The thing I most longed for from a young age was to have my own child, I'd always had a mothering nature, which is something a lot of people think someone with Asperger's can't have, but that's a huge but common misconception. I've always been an empath, I am very much aware of others feelings and often take them on myself. But due to my past and my anxities I wasn't sure I'd ever be able to have a relationship, due to my fears of closeness, feeling trapped, and the issues I have socially that come when people start to get close to me.
But fast forward a few years and at the age of 23 I was married, living in my first home with my then husband and we were pregnant with our first baby. I very much had a image of what pregnancy and motherhood would be like. It was very black and white, have the baby, look after the baby. Everything stays the same! But that's one of the most autistic things about me.... Everything is black and white. I struggle to imagine anything outside of what I see and think, my brain just dosent allow it. Which is so so frustrating! And makes life a lot harder!
I knew pregnancy and child birth were a risk for me, it's something I thought a lot about before becoming pregnant. I was told many scenarios and scary things that could happen when pregnant, and I'd taken on board the difficulties I was likely to have due to a condition I have called Ehlers danlos syndrome.
EDS is a connective tissue disorder causing my joints to disloacte frequantly, often daily. Along with chronic pain and various other issues like the effect it has on my gastro system. I was expecting to end up on bed rest, in a wheelchair, off work, going into early labour. You name it I was ready and prepared for the worst.
I also have sensory processing issues with my Asperger's, and being touched is a big issue for me. Because anyone being in my personal space makes me panic and feel overwhelmed. And we all know that you can't get pregnant and give birth without physical contact and people poking around! But I surrvived, and loved being pregnant. And amazingly I had a healthy and happy pregnancy.
Then there was the induction and birth, again I was still in this bubble of "oh this is going to be magical" I was SO excited to give birth, I wasn't scared in the slightest. I knew it would hurt, I was prepared. I managed the natural delivery I really wanted and other than a few hiccups. I didn't end up a pile of broken bones on the floor and I had a beautiful healthy baby. A girl! Which I was super shocked about as I was sure we were having a boy.
And we called her Florence Effy Louise Shepherd.
Now the reality begun! I had my beautiful baby, the baby I so badly longed for and worried I'd never get. But I didn't feel how I thought I'd feel, I imagined wanting to hold her against my chest straight away, for as long as possilbe, not put her down and just lie there cuddling her constantly, feeding her instsntly. But I remember her being born, my legs being up in stirrups, being fixed back together, Florence on my chest under my top and I couldn't stop focusing on the fact I was all gooey and slimey from having her put straight on my chest, and focusing on god knows how many people fumbling around my bits! So, totaly opposite to how I imagined, I went of to have a bath within 45 mins of giving birth! I remember being so overwhelmed, and not in the ways people would guess. I was so overwhelmed by the lighting, the bedding, the way my body felt. The noise, the people. So I had that bath, with the light of! And with just the torch of my phone dimly in the room. And I felt ready to go and try her first feed. And enjoy those precious cuddles
That night in the hospital I couldn't stop looking at her, she was incredible and the most amazing thing I'd ever seen. But I found it so hard to hold her! Which sounds awful, but the best way I can explain it is I felt over touched! I needed my body to be left alone just for a little bit.
Over the next few days I carried on like I'd not even had a baby, people coming over constantly, and within 48 hours and were going on little trips to the park for walks and fun with friends. Safe to say I had no idea quite how much my life was going to change and I was in total denial. But not the normal kindof denial, it was autistic thinking. I couldn't imagine things in a realistic way. That bit of my brain was never that great! I just thought Florence would fit into our normal routine, and I'd be ok on no sleep, because I'm a rubbish sleeper anyway. But how wrong was i! Your whole life changes when you become a mamma.
When Florence was about 5 weeks old I was diagnosed with PND (post natal depression) I couldn't feel anything for my baby, I knew I must have loved her, but I didn't feel it, I knew i HAD to feed her, and HAD to cuddle her. But I felt repulsed at doing so. Looking back now I see the situation very diffrent, to how I understood it at the time. What was made out to be, and what I felt to be a PND issue alone, was definitely not the case. It certainly was a issue, but it was also my Asperger's, it was me trying to adjust, but feeling so incredibly overloaded I just shut down. I continued to go out all day every day with Florence, and then spend every night lying there crying terrified she would wake up and I'd have to hold her. And as a allergy, reflux and colicy baby my god did she need me. But I just needed to escape, And have my body to myself. But the biggest issue was the noise! Obviously babies are noisy when they cry. But to a person with sensory processing issues that cry, is 10 times louder to us, I'd hear the cry and id want to vomit, id sometimes be gagging and shaking at how much that noise effected me. I always held her when she needed me, so over the following months I fought against everything and found ways around things, like baby wearing! She lived in a wrap, because then she was held. But my arms were free and it was more bareable for me.
Things improved massivly over time. By the time Florence was about 7 months old I remember lying on the bed with her and feeling at peace, feeling like I knew I could do this and I loved her. I really really loved her. And it was the most magical moment ever. But the situation had changed, and with that my feelings to Florence had to. I was back at work doing keeping in touch shifts, and my routine was getting back to normal. Because another huge part of life with Asperger's is routine. From what I'm eating to where I'm going, who's going to be there, what time I get in the car. And let's face it, nothing goes to plan with a baby! But a routine starting to get back to normal was a huge turning point for me.
The next 18 months or so everything began to change again, we were looking into getting a new home. A huge change to anyone, let alone someone with autism. But I was excited as well as nervous. But to cut a super long story short, we got a new house. It couldnt be lived in for 6 months due to renovations but we moved in with my parents, and then in may 2018 we moved into our new "forever home" And it was perfect.
In the time living at my parents I started a new job, we were renovating a house and living in the home I grew up in brought up a lot of painful memories and difficulties, which I needed time to deal with. But just as I was trying to do that, The biggest change ever was about to happen. My marriage was over. My husband told me he had been having a affair for 6 months, Just 2 weeks after us moving into our home. And I was completely crushed. Despite it being a unhappy marrige in recent years, I had no idea how I was going to manage working, having a chronic ilness which required a lot of support from others and most of all being a single parent. Now it was just me and my girl. And this is where my own journey to accepting the way my brain works, and the things I need really started to take place. And what made this happen was my daughter, for a good while I'd noticed she had sensory issues. And through exploring my daughter's needs, I began to realize my own!
Due to having a late diagnosis, at around 13 years old when I'd already been expelled from school and had become unwell mentally there was never a focus on my Asperger's. Like what it meant, what I needed and what my struggles were. But now all of a sudden through having my own child, and noticing her needs I was suddenly processing what a huge part it played in my life, and how I could meet those needs and also express my difficulties instead of surpressing them and going into overloads and shutdowns. Whilst helping my daughter also. Over the last year ive joined a lot of groups and followed pages within the autistic community, one of the best accounts I've followed is a amazing lady called Sara, who is known as "agony autie" who herself is a mum with autism. She was always talking about overloads, and stimming. I had no idea what either of those things actually meant, but it soon made SO much sense. Stimming is a self stimulatory behaviour, it's something that is often a huge thing in a autistics life. Weather it be visual stimulants, oral, tactile or auditory.For me I was starting to notice things I had always done, such as chewing my clothes, hair pulling, picking, chewing on anything and everything from pens to my own fingers. Never realising and never knowing why. Ive always needed to fiddle, my hands have to be doing something. And I always loved to squeeze things! I'd get these crazy urges to just squeeze someone or something and the release I'd get after would be almost euphoric! Again I never thought about what I was doing or why. These are things autistics do to meet a sensory need. And a sensory need is just as important as any other need to keep your body going, if you want to stay grounded and well.But it's always something I'd hidden and tried to surpress.Ive also always suffered with tics (involentry movmets and noises) Which I also believe were happening more due to surpresing my sensory and emotional needs.Then there's the overloads, something I'd always struggled with, where my body and mind just couldn't cope with anymore with sensory or emotional triggers and I'd just totally explode or shut down completely. Sometimes not even be able to move or speak.
But now things are totally diffrent, I'm still a huge masker, I hide my true self, my quirks and needs the best I can, through fear of not fitting in. As despite how well I socialise online, and how much I express myself it's very diffrent in person. I love people, and have lots of friends, but I do struggle with social bounderies and I've often lost friends due to the way I've perceived things and reacted. Or I've panicked and pushed everyone away. Not many people unless they know me well would think I had Asperger's. They would probably think I was just cringeworthingly honest and abrupt, a non stop talker (verbal dioreha is a common feature in Asperger's!) And I'm just a bit hard to be around sometimes, I need a lot of reasurance and I ask a lot of questions. I like the guidence of others as my anxities make me feel I'm incapable. Which I'm not, but the way I veiw things isn't always right and Its helpful to check, before I misread a situation and go in all guns blazing. I still really struggle to meet my stim needs outside of my own home and privacy, I definitely compress things when I'm at work, which then means I struggle more with social situations, noise, lighting etc than I would usualy.But at home there have been some big changes. Everyday I have made sure I have plenty of self care time. For me that includes having a bath, dimming lights and lighting candles. But also having various sensory things around. Like necklaces I can chew, so I don't rip my clothes to shreds with my teeth! Me and Florence share two big baskets of sensory items, from squishy things to things like crystals to feel and look at, soft things, chew things. And we've both changed our bedrooms meaning we have particular lights to create the environment that helps us the most. Next to my bed you probably wouldn't find what you would find next to most 27 year old mums beds! I have a wooden fiddle puzzle toy, a huge giant slime filled squishy ball, and a light which is technically a children's night light. But these things keep my sensory needs met, which makes everyday life so much easier. Along with a bottle of morphine.... I know right. What a combo!
Since learning more about my Asperger's, and getting the hang of motherhood (and absolutely loving!) it I feel like I can finally help myself, and others. Its obviously not as easy as just the things mentioned above, as there are many battles to face . But having more understanding about myself and how my brain works and what I need I'm finally starting to put myself and Florence first. I'm meeting my own needs and with it motherhood is so so much easier.There will always be challenges, but the more people understand about autism spectrum disorders, the more us neurodiverse can speak out and be understood and supported, and with that the more accessible and bareable the world will be for those of us who are just that little bit different Rosie x