William.

Not what we were expecting, but we wouldn't change him for the world.

Hi friend, I’m Sophie, an introverted coffee-loving creative. Welcome to Finding Simple & Calm, a place where I share the harsh realities of motherhood and being neurodivergent in my pursuit of a simple life in an overwhelming world. I’m also passionate about creative businesses, and I love writing about, and teaching, methods to simplify and organise your business, reduce the overwhelm, and spend more time being creative.
My whole-hearted mission is to build a business baggy enough to live in, a business that works for me, not the other way around. I hope you can join me?

William is my 2-year-old son. He wasn’t the child I was planning to have when I fell pregnant, but he is the child I have now and he’s incredible.

The last 2 years have been full on. We (my husband and I) first noticed something was different with William when he wasn’t progressing as our older 2 children did. He was very delayed in all areas of his development, for example, he didn’t smile or babble for a long time. He couldn’t hold his head up or roll over or reach for toys. There wasn’t any communication between William and us (apart from laughing when we tickled him.)

Then, at 6 months old, we started weaning him. And then we stopped again. William couldn’t sit up and had no ‘trunk’ strength, he was still like a tiny baby. At 9 months old, William started nursery (day care), and we were so excited! We expected him to thrive and quickly catch up and join in with the other children. He didn’t. We expected his sleep to improve because he’d be more tired. It didn’t.

His nursery staff highlighted some concerns that they had, and then we received William’s 12-month review questionnaire through the post and a telephone appointment to discuss it with the Health Visitor. I remember reading through the questionnaire and the sudden feeling of failure wash over me as a parent. He ticked ‘no’ for every single thing. He couldn’t roll over, sit up, crawl, talk - nothing.

The guilt set in. We knew that something wasn’t quite right with William for a long time, but we hadn’t realised just how different he was. I requested the Health visitor come and review William herself and to get advice.

The next 12 months were a whirlwind.

I was diagnosed with depression and he was diagnosed with Global Development Delay. He was referred to so many professionals: A Consultant Neurodisability Paediatrician, Speech and Language Therapy, Physiotherapy, Occupational Therapy, Audiology, and Ophthalmology. There were tests, investigations, scans and countless blood tests performed, and in this time, the seizures started.

The seizures have been the most terrifying thing we’ve had to deal with as parents. They’re absolutely horrific to witness your child go through. William’s seizures tend to be due to an illness or infection, which he is incredibly vulnerable to, especially being in childcare. He’s unwell constantly, and even a common cold can make him so poorly and cause him to be hospitalised.

But what do you do for the best? Keep him at home away from germs as much as possible to prevent the seizures, or send him to nursery so that he can grow, develop and socialise with children his own age? My husband and I have been over this question more times than you can imagine.

From 18 months old, William was having seizures every 2 weeks. We weren’t sure what impact the seizures were having on his little body and brain, and we may never know. Unfortunately for William, this is his norm, and we just hope he grows out of them as his immune system builds and he grows older.

He’s 2 years old now, and the seizures have reduced to monthly. His nursery staff have been trained on his seizure medication, and they’ve attended extended life support training. Sleep is still a massive issue for us (my husband and I, not William!) because William doesn’t need a lot of sleep. He goes to sleep wonderfully, but at around 11 pm, he wakes up for hours for no reason other than he’s had enough sleep. We’re waiting to hear back from sleep specialists who help children with additional needs and neurodisabilities to get more sleep.

Last week, he had a swallow assessment (again) because he’s coughing a lot when he’s eating and drinking. He’s been put back onto pureed food and will be reviewed again in a few weeks. Another setback when we’d made progress.

We’ve just had an interim meeting with his paediatrician to discuss the next steps, as all of his bloods, genetics, scans, and investigations have come back normal. We don’t know what’s causing his Global Development Delay and the problems that he has. His paediatrician is sure that William has autism, and we are on the (very long) waitlist to get his official diagnosis.

Today, as I write this post, I’ve applied for a special needs nursery for him to attend on the days that he isn’t at his other mainstream nursery. I’ve had an appointment with the GP to see if there’s a quicker way that we can get the autism diagnosis, and I’ve been in contact with a service that the GP recommended.

A letter came through the post from William’s speech and language therapist with details of a 5-week Makaton course for us to attend to try and help him to communicate with us. I’ve booked onto it, but of course it’s on one of my work days where he’d be at nursery. A day he’ll miss but I’ll still have to pay for.

I had a phone call from the Integrated Children with Additional Needs (ICAN) service to arrange a progress review with his physio, OT and speech and language therapist. We can’t do the date they suggested because we’ll be on the Makaton course, so they’ll be in touch with a different date.

Today is my work day and I’ve done no work because I’ve been busy organising William’s health and care needs. Yesterday was interrupted because of his paediatrician appointment. Tomorrow is looking like a good work day. I’m keeping everything crossed that nothing crops up and I can work uninterrupted. It’s my final work day before we break up for Easter for 2 weeks, and working with 3 children is not fun, so I need to get as much done as I can.

Caring for William is a full-time job. But I already have a job and two other children to care for. I spend hours per week booking appointments, arranging meetings with various health professionals, keeping on top of when his reviews are due and chasing and booking appointments for those.

I get phone calls from all sorts of people who need to arrange something for William. Every professional comes with their own toolkit of resources that I should read and do, and things we should learn and adopt to help him as much as we can.

It’s a lot. Especially with no other support other than when he’s at nursery.

I’m not writing this post for sympathy, but rather for myself. I’ve found that writing helps me to work through something, understand and process it. There’s so much going on behind the scenes, and when it all feels like too much (like today), writing this has helped me to realise that it feels like a lot because it is a lot.

When it’s all laid out in a post like this, it’s easy to see why I’ve lost 90% of my clients and my income (and sanity!). I can forgive myself for not doing as many work hours this week as I’d like to, because I’ve had so much going on that needs my focus and attention now.

The reason I’m changing the way I work and not taking on long-term clients is because of William, and the fact that he needs my attention right now. Especially when he’s unwell and having seizures or in hospital, it’s not fair for me to be worrying about work or missed meetings when I need to focus on him.

It won’t be forever. His health will improve, he’ll start school, and I’ll have more time to work then. But I’m actually thankful to William for making me slow down, change the way I work and for helping me see that this is all temporary - we take things week by week, day by day sometimes. We go slow and stay flexible, and we adapt to what comes our way.

Being William’s mum has taught me so much. About life, parenting, work, but mostly about myself! I’m proud of how strong I am, how well I advocate for his needs, how I have navigated the most difficult 2 years of my life and come out hopeful and with patience.

So yes, I do grieve the child I thought I’d have, the maternity leave I planned that didn’t involve postnatal depression, the childhood memories I was going to give him. But I wouldn’t change him for the world.

And one final thing before I go. Thank you for being so understanding when I can’t post here consistently. I’ve had so many lovely comments and emails, and meetings lately with women who are so supportive of me and my situation with William. So many of you who want to work with me, or are waiting on an email reply from me, or are paid subscribers to this Substack publication have said that there’s no rush, there’s no hard deadline, there’s no need to worry about showing up more.

You’ve told me to focus on William, and you’ve had so much patience with me when I’ve had to cancel and rearrange meetings when he’s been unwell. Many of you have told me that I’ve inspired you to be more flexible in your own businesses and lives, and I can tell you that you should be! Your clients and customers and readers will understand and support you, and still want to work with you. I know this because you’ve taught me that.

Thank you! I appreciate every one of you.

P.S. If you are still waiting on a reply from me, please send me another message. Or better yet, email me at sophieinglebyva@gmail.com and I’ll get back to you!

Speak soon,