Raising a child with special needs
When we were waiting for our third child to be born in 2012, I knew what to expect. Our two girls were already 8 and 10; with them both, I’d taken my two weeks’ parental leave topped up with some annual leave each time, and had then thrown myself straight back into work whilst my wife did the heavy lifting. Literally.
I would leave the house before 8.30 in the morning and get home towards 6.00 at night. My wife would have already picked up the kids from school, dinner would be on, and I’d catch up with everyone’s days, trying to prise information out of the kids that they’d already splurged out to their mum. I might then do the baths, stories and prayers, and we’d start the whole thing again the following day.
Jake arrived quickly. So quickly that I barely had time to get back to the hospital, having been sent home when visiting hours ended. He was a strapping, hairy bub and we were all instantly smitten. Life carried on as it had before with the girls. We felt a lot older than first and second time around but took it in our stride. Jake was only a few weeks old when I left everyone to go to Hong Kong and Taiwan with work, and then Peru, probably with trips to India and Dubai thrown in too.
Jake was only about two when we started the two-plus-year slog to get his autism diagnosis. We rocketed backwards and forwards between convincing ourselves that his lack of speech or repetition of things he’d heard on the TV were a regular part of his development, and the feeling that something wasn’t quite right. In 2016, we finally spent an hour or so with a consultant and educational psychologist as they played with Jake, and their team watched his behaviour from behind a one-way mirror. He played along with them happily, dashed around the room periodically, scripted from Paw Patrol, and tried to get a toy from a top shelf by dragging various bits of furniture from around the room to build a precarious tower (before we intervened). A week later, we finally got our diagnosis and then the fun really began.
When Jake was born, I was working for a publishing house, and busy with back-to-back meetings, competing deadlines and an implicit competition to keep up with the other senior managers in the company. By the time he was eight months old, I’d got through one round of redundancies and restructures, demoted and sad, but interested in my new role looking after a different area of the portfolio. When another restructure came around about a year later, I decided to take the plunge and escape, setting up my own business focused on helping academic researchers with their publishing.
A delicate balance
We are going into our seventh year of business in 2021, and, though it’s still a struggle to turn work off, my work/life balance is much better.
Jake goes to mainstream school and has full-time support.
My wife and I run our company, and we both work from home. It can be incredibly stressful being self-employed but the lifestyle that we’ve crafted is very important in looking after Jake. If I had still been working at the publisher’s, the lion share of appointments with teachers and schools would have fallen to my wife (as it does with most families with special needs kids), and I had already missed out on a lot of our daughters’ lives when they were smaller, so I didn’t want to do that again. If we weren’t self-employed, and I was still working full-time, my wife would have been forced to give up her freelance work completely and become a full-time carer. I think it works out well for us both to be self-employed but the situation with Jake having significant additional needs does mean that we have to take a lot of hours out of our business for SEN meetings and recovery time.
Jake has learnt to contain his behaviour whilst he’s at school so, when he does get home, he can be either subdued and in need to coaxing back to life, or he can be like an unbottled genie, charging from room to room, as lines from The Three Little Pigs or The Gruffalo spill from him. Sometimes, he just wants to sit next to us or wants us to staple his latest drawings of one of his favourite stories into a book.
My wife and I take it in turns to pick him up from school and avoid scheduling any major work during those afternoons that we have him. If he’s merrily drawing in his room, then we are normally safe enough to get a bit more work in.
We have also learnt to be kinder to ourselves, and to acknowledge the extra pressure that we often feel at home. Sometimes, it feels like if we didn’t spend time together during the day, or at the very least, over lunch, then there would be slim opportunities to catch up on anything that is just the two of us.
Jake has very little need of sleep, so it’s often edging towards 10 or 11 at night before he will finally fall asleep. He can then also be up a few times in the night and will invariably end up in our bed by morning. The mental and physical toll of sleep deprivation over a period of eight years is huge, and working for ourselves gives us the flexibility to catch up on sleep after school drop-off if we’re feeling particularly exhausted and unproductive. It has taken us a long time to not feel guilty or lazy about recharging like this when it becomes necessary, and we’re only able to do this because we’re self-employed. It’s a while since I worked for anybody else, but that sort of thing was generally frowned upon in an office environment.
We also take it in turns to get him to bed, so that the other person can have a bit of a break and do those relaxing things that everyone else does, like watching TV without an 8-year-old hurtling backwards and forwards in front of the screen, shouting about the Big Bad Wolf.
Being a better Dad
I know that parental leave and the attitudes of organisations have changed since Jake was born, and I like to think that the varied, rollercoaster lives of parents with special needs kids are better accommodated these days. Not everyone is able to, or interested in, becoming self-employed, but it has given us the flexibility to fit work around Jake and our family. We obviously still have deadlines to meet, calls to make and workloads to negotiate, but ultimately it means a better life for Jake. It means that I at least have the potential to be a better dad, especially in meeting Jake’s additional needs, and, in the great scheme of things, that is the most important thing that I want to do.
Written by Rob Edwards