Honestly, life has just felt really hard lately since Harry’s potential ASD diagnosis. How’s Jan going for you so far? The cold weather outside and coming into heat inside has caused a few migraines lately and I know my stress levels are rocketing at the moment. Ironically my word for 2020 is flow, and so far January is doing anything but flow. It’s laughable really that no matter what your best intentions that’s just how it goes sometimes.
The year hasn’t gotten off to the best of starts. We’ve had lots of surprising moments that just have taken us completely unaware. My anti-fragility is slipping and resilience has taken a huge hit recently. Starting this ASD journey with Harry has bought up some interesting philosophies and advice and opinions from other parents, the internet, Instagram SEN influencers and school help and support. So far I’ve had such a mix of positive and negative help and I turned to Jon last night and blurted out that I just feel so overwhelmed with the enormity of what this diagnosis might mean for Harry and us as a family. I keep bursting into tears mostly at night when the kids are in bed and we sit down together.
I can’t go into it right now, but we had an incident where a support worker met with Harry without our prior knowledge. We both felt completely cut out of Harry’s care and like our child is slipping through our fingers. And yet we have all the responsility of looking after him and bringing him up the best way we can. It’s such a weird feeling to not have a handle on your own child’s welfare because his care isn’t communicated. We feel cut out of the process and that’s confusing since Harry is 9 and very much still a child. I know in my heart I still see him as my baby too, that’s normal though isn’t it? So to feel out of control with his parenting is disconcerting and super upsetting.
We look at Harry sometimes and go, when did you get so tall? I’m sure we were at toddler group last week, do you feel the same? The years seem to have flown and we can’t keep up with the growth and how mature he is. His interests are so deep and intellectual, he’s way brainier than us! He amazes me with his facts and things he remembers from years ago! He askes questions we can’t answer and probably knows the answer already anyway. We can’t keep up with his fixations because he’ll go hell for leather on one subject and then drop it as a new thing comes in. The ferocity with which Harry approaches each fixation is both to be admired and managed. It’s inspiring and draining. He’s passionate and bright and incredibly impatient. For example at the moment he’s obsessed with WW1, also known as The Great War. His thirst for knowledge about everything to do with the war means he talks about it constantly. He started digging a trench in our garden and we had to tell him to stop which was so frustrating for him.
He’s now digging a trench at his Grandad’s house because his garden is the size of a football pitch while ours is the size of a postage stamp. He goes on and on about when he can go and dig this trench and it’s exhausting explaining over and over again why we can’t go. It’s dark, Grandad’s not in, Daddy’s at work, we’ve got to go swimming etc etc. He’s reading a Horrible Histories book in between to keep him going. Last week The Flying Scotsman was the fixation, I wonder what next week will bring?
Katie, in the meantime, is getting upset about little things and having tearful moments which isn’t like her, so we know it’s because we’re all just slightly stressed at the moment and we need to give her attention too! We’re trying to unhurry our lives and just bring things back to basics. Home cooked food, sitting together for meals, reading them stories at night and going to church once a week. We missed so many services last year due to blogging assignments so I’m dropping reviews for now, since the kids struggle with them anyway and I cant get Harry to look at the camera!
If we could review somewhere that’s ASD or sensory processing disorder friendly that would be amazing, because we’d get to try something new. My thing has always been adventure and trying new things. That’s hard with our family the way it is at the moment.
Jon’s taking Katie to Mousehole this weekend for Daddy Daughter time and I’m staying here because Harry can’t stand the thought of being separated from his trench. I had mummy daughter time in town last weekend and loved it. We shopped up a storm in Primark and went to Boswell’s for lunch ! While Jon took Harry digging, in fact Jon did most of the digging. After working all week as a mechanic which is physically demanding work, I couldn’t love Jon more for taking rest time and doing this to make Harry happy.
Considering we only found out in October that Harry has potential ASD, we’ve been through a lot in terms of appointments, articles to read and digest, people coming and going, meetings here and there. And of course we’re still decorating our house which is a huge job as I’m also decluttering at the same time. Harry struggles with letting anything go. We thought it a great idea to decorate the entire house in one go as the carpets all needed changing from bringing up home based kids. It’s come out that Harry can’t cope with anymore decorating so we’re prioritising getting finished as quickly as possible to get life back to normal for him while he’s at school. The kids are sharing a room at the moment, the sooner we can get them back into their rooms the better as they bicker in the mornings!
Honestly I haven’t felt this tearful or out of my depth with my parenting since they were small and we had zero sleep!
I’d love to see friends but everything is about Harry and getting this house hold sorted and back to some kind of normality. I have to accept that my priority is Harry, Katie, Jon and keeping this home afloat. That cuts deep because I love my friends and helping them with their needs too. And as much as I love this blog I can’t keep up at the moment, so may have to drop working with brands for awhile and just take it back to basics too. The thing that made me fall in love with blogging is gone. Do you remember when we just wrote about whats really going on in our lives rather than the products we use? When I started blogging it was about sharing our lives, not having a niche! Not selling products or working with brands. I don’t want this space to become one big #AD
My top 3 priorities for Q1:
Harry and Katie supporting H the best way we can with this health and wellbeing SEN journey / mentally, physically and spiritually
Fitness and wellbeing – getting myself physically and mentally strong / finding the joy in soberiety / skincare rosacea / drinking lots of water / getting outside / knowing how I recharge best
Organising this home so everything flows so much better. Meals / Homework / Quality Time / Cleaning rota / Extra-curricular activities
If you’re feeling overwhelmed can you choose just 3 priorities this quarter? Once you realise how much is involved in 3 you might drop the others. I have to be realistic as a mum what I can do and achieve versus what I want to do!
As always, we hold on to our God who never leaves or forsakes us and walks in our despair with us. We know Harry has an amazing future ahead of him and with Yahweh’s strength we will carry on and hold on to the joy we know everyday because of knowing him. Psalm 23,