Yes, it’s been a long time. And honestly, it’s because this website stopped working on my computer! Every time I tried to open a new post, the whole browser would shut down! And I haven’t the patience to do whole posts on my phone.

Major things have happened since my last post in 2019, both globally and for our family.

One of my previous posts talks about how I was worried that his loss of speech might point towards autism. Turns out I was right. He got his autism diagnosis in January 2020. He is wicked clever when it comes to maths and space/planets/stars. His capacity for memorising stuff about space boggles my mind. He’s now 9. He’s so incredible, doing well at school, has lovely friends and is a happy joyful child. He has certain things he struggles with, like food, but he is happy and really I couldn’t ask for more.

His diagnosis lead me down a path I never expected. At his appointment, the consultant asked about family history and I said that I have ARFID. Avoidant Restrictive Food Intake Disorder. I’ve had it since I was a toddler. And the consultant just said “yeah, most people with ARFID are autistic” and moved on with the appointment. It left me feeling completely blindsided. It took me a few weeks to then go online and type in “autism in women and girls” but when I did, it was like a lightbulb was turned on in my head. I read through the lists, and posts from other autistic people, and read about the “Lost Girls” like me. I sat and wept. I finally had a reason why I’d been writing in diaries since I was a child about wanting a different personality, wanting to change everything about myself, wishing that “my brain wasn’t broken and faulty”. I am autistic. I got my formal diagnosis in November 2022.

Lockdown was kind of a blessing in disguise. I do not want to downplay the suffering of others but being able to unpack all of these feelings at home without any external factors was very valuable. I could learn who I was underneath the “neurotypical” mask I have been putting on since childhood. I could do so without any commentary from other relatives or friends. I had a whole year at home, part furloughed and part working from home, to find who I was underneath all the people pleasing.

I took my cues from Jack who has never been ashamed of who he is and will be 100% himself at all times, joyfully so. He stims openly, he infodumps about planets, he has friends who have the same interests as him and all in all is content with himself.

It is a long ongoing process, learning about who I really am and learning not to care about other peoples opinions. My clothing style has changed, my interests are less hidden, I stim, I get accommodations at work like noise cancelling headphones and a dimmer lamp so I don’t get overwhelmed.

I actually changed jobs in 2020. My previous company just came right out and said no when I asked for disability accommodations so I left. My employer now as been a breath of fresh air. My boss is very understanding and kind. When I commented about her being so kind, she came back with “what have other bosses done to you that you are so overwhelmed by basic human decency? This isn’t unusual kindness, this is just being a decent person”. But other bosses throughout my life were not understanding or kind, a couple in particular were downright rude, and one was just cruel. I was not used to kindness. I was used to being considered weird and overemotional. I had always wanted to quit work entirely eventually, but now I don’t have to.

I am from now on moving towards sharing my son’s face less online. I only share on my personal facebook, and will leave these posts up only because he looks a lot different now. You wouldn’t look at him and be able to tell he was premature. He is an average height and weight when you see him with his school classmates. He has no lung issues, and even fought off sepsis successfully twice. He’s doing so well.

I am doing a lot better mentally. I don’t often think about his nicu time or his oxygen cylinders or my ptsd. I have a teary moment if I see a certain episode of a tv show or look at Timehop. I try to keep busy around his birthday. I had fortnightly therapy for a whole year to deal with my diagnosis and my mental health.

So once again I am saying, I don’t know how often I’ll add blog posts here, because his prematurity doesn’t really affect me any more and doesn’t affect him at all. We are a lucky family 🙂