A fork in the road

I wrote the following post back in April when, like most of the general population, we were feeling very ground down by Covid and lockdown. We were shattered and very worried about Jake at school; following the school closures, he had fallen behind and the gap between him and his classmates had got even larger.

In the end, I didn’t post it but added it to the pool of other posts that are a bit grumpy.

A photo of Jake throwing a stone into the river
Jake skimming stones in Dundee during the summer holidays

Jumping forward, and Jake is now at a new special school.

Once the decision was made, things happened quickly and we just got him into the school that we’d liked with a day to spare before the summer break.

His lovely teaching assistant who stayed with him through several years at his last school suggested we didn’t call the new place ‘school’ (or ‘S.C.H.’ as our whole family say to avoid Jake kicking off). So we had been referring to it by its name all summer and telling him that school is finished.

It’s at least a two hour drive a day, and hard to leave him, but so far, things look good. No early morning tantrums or hiding his uniform.

It’s a weird feeling, changing from mainstream to specialist, especially as our kids have been going to the local school since 2006, as did Sally, her mum and all her family. It’s a wrench saying goodbye but it’s the right move for Jake now and we are excited for him.


From April 2021….

I slept in Jake’s bed last night. It’s always taken hours to get him to sleep and now he won’t fall asleep unless one of us is next to him and we’ll invariably fall asleep ourselves at the end of another busy day.

The Easter holidays are kicking off tomorrow and he is very excited. He has recently rediscovered his Toy Story figures so has been acting out Toy Story Christmas whereby a rogue Woody and Buzz arrive to disrupt a party with fatal consequences. At least that looks to be the case, judging by Fake Buzz lying on the stairs securely tied up with some pyjama bottoms. The authorities have been informed…

He has also been drawing. A page for each of his favourite stories as trailers for the full books that he’ll then draw. Three Little Pigs, anyone?!

It has been months since I posted anything here as it’s been a tough time and my posts have made me miserable enough without inflicting them on you, dear reader. Lockdown for Jake was actually OK as he’s always very happy to be at home. We managed to get a couple of hours’ focus out of him for his homeschooling and then he’d have a fantastic time in his room, playing and drawing and generally letting off steam.

He’s been back at school for a couple of weeks and it’s been a rollercoaster. His first question when he wakes up every morning is ‘is it not school today?’ When he hears it is, he’ll scream and he’ll cry. Some mornings, he’ll hit and scratch us. If we manage to get him out of the house, he will invariably be upset on the walk to school and tell us repeatedly that he loves us in the hope that we’ll crumble and let him come back home. This morning, he stood on the school steps and bellowed like a bull, much to the consternation of the poor teachers at the door. Yesterday, he capitulated and walked grumpily through the door, saying ‘Well, now I’m really angry’. No sugar, Sherlock.

By 9am, we are wrecks. This lockdown has mostly been brought to you by Aldi’s finest and full-strength coffee. Wrung out and tired, and feeling incredibly guilty and selfish that we’ve just left our anxious boy in an environment that is adding to his anxiety.

A couple of weeks ago, we had the annual review of his EHCP (the old ‘statement’) that lists his needs and how they are to be met. It’s always sobering and we always forget to appreciate the effect it has on us, like all the milestone events through Jake’s life. This time, we were discussing that Jake’s needs in a couple of years when he’ll be moving to high school will probably be better met in a special school setting.

A photo of Jake holding up a book of the Three Little Pigs to the camera. Jake is smiling.

Nobody who we’ve spoken to since have seemed surprised and, in a way, we’re not really. We have already done the tours of the local special schools a couple of years ago (nothing like starting early when you’ve a special needs kid) and we left thinking that Jake wouldn’t have the same level of needs as the kids there. We thought he might take a leap of development when he hit 7, and would be better able to access the mainstream curriculum. Maybe he’d end up sitting a few GCSEs in time so would still need care but possibly in a mainstream school.

A photo of Jake and his dog Oscar. Jake is kissing Oscar’s head.

We’re now coming to realise that the gap between Jake and his classmates has got big. Even without the disruption of Covid and homeschooling, he has fallen behind so much that he’s probably three or four years away from his peers. Seeing the work set for them in Google Classroom during the last lockdown made it obvious that he couldn’t access a huge part of mainstream education.

It’s another big fork in the road for Jake and for us. With our daughters, I was naive in my awareness of the impact that changes now would have on the whole of their lives. Now with Jake, I automatically jump forward to high school, his life after school, whether he’ll make friends, whether he will live with us forever. What happens when we get too old to care for him? Then when we are gone, where will he live? Are we asking our daughters to stop their lives so they can look after him? Where will Jake be happy and fulfilled?

A photo of Jake and his dad Rob smiling at the camera

In the meantime, before we go into a flat spin of existential panic, we will get cracking with what we can control, regrouping and getting on with the task of contacting potential high schools. And avoiding an 8-year-old’s swinging right hook and the nuclear fallout of suggesting that maybe it’s time we gave him a haircut….

A photo of a very hairy highland cow
Photo by Gabriela Palai on Pexels.com

Re-setting priorities: balancing work and a superhero son

This article was published on the Music, Football and Fatherhood website in April 2021 http://musicfootballfatherhood.com/2021/03/31/raising-a-child-with-special-needs-by-rob-edwards/

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.

Getting diagnosed

Jake was only about two when we started the two-plus year slog to getting 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 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 running our own business 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 the majority of families with special needs kids), and I have already missed out on a lot of our daughters’ lives when they were smaller, so I don’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 want us to staple his latest edition of one of his favourite stories.

My wife and I take it in turns to pick him up from school and avoid scheduling any major work during the 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.

Being kind

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.

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.

In closing

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.

The tree is up!

Early for our house, but we’ve all been glum this week and needed some festive cheer.

Our eldest is home safely from her first semester at university, after an odd but mostly enjoyable start. Our youngest daughter is bossing A-levels. Jake is thinking every morning is Christmas and coming out all fists a-blazing when he’s told that it’s STILL another school day. Christmas itself cannot come soon enough.

A healthy, nutritious journey back from university 😱😬

Jake would be perfectly happy with just one present about which he has become transfixed. It costs all of a fiver and, to anyone else, it’d probably be a bit of a stocking filler and a last-minute add-on present that you might grab on the way to the cash desk. To Jake, the day isn’t complete without him asking to see a picture of it on my phone, and Father Christmas will not know what’s hit him – probably quite literally – if he doesn’t rock up with it.

Now it’s fair to say that Jake is obsessed with the three little pigs. He spends day after day drawing new versions of the story. They get more detailed as he recalls lines from versions he’s watched on YouTube, and the adjectives used to describe the ‘ruthless, sneaky and sly’ Big Bad Wolf get more and more sophisticated. Together with Little Red Riding Hood, the Three Billy Goats Gruff, The Gingerbread Man and Jack & The Beanstalk, those pigs have joined a canon of stories that Jake – and we – read until the cows come home.

So, this year’s festive favourite is another version of those porcine builders.

Jake absolutely loves Christmas and he loves unwrapping. It doesn’t really matter what’s inside the actual presents, but the frenzy of wrapping-paper-ripping and casting aside of what’s inside is joyous.

We honestly can’t wait. In addition to the cycle of disappointment and anger when he realises that he has to go back to school, he also has that ‘end of term’ knackeredness that most kids (and teachers and parents) get.

Counting down the days

After this year with its wider issues, and some rollercoasting with our business at the moment, we need some hibernating time to recharge and enjoy being with one another.

We will go to Midnight Mass, hoping that Jake won’t be too feral, then spend a quieter Christmas than usual, zooming the family that we can’t see, and enjoying being with the few that we can.

We shall also be reading The Three Little Pigs at least eleven times hourly. And it will be bloody lovely.

Happy Christmas and best wishes for a brighter 2021.

Negotiating a very different summer

I try to keep it light in this blog, but it’s been a tough few weeks. Work is a concern (events management not the easiest industry in which to be right now), we’re on the run-up to A-level and GCSE results for our daughters, our eldest is preparing to leave for a very different experience at university in the autumn, our youngest daughter needs us and we have Jake’s return to socially-distanced school looming next month.

On the whole, Jake is fine being at home and busy drawing and reading (still very three little pigs-centric). In fact, it’s been getting harder to persuade him to go outside with us, even for a quick dog walk. So, last week, we ventured out to a shop with him after much persuasion and cajoling. So far, so good.

What we hadn’t properly considered was how he’d find the fact that everybody is now wearing masks and that people working in shops are behind plastic screens. He now has to squirt his hands with gel at every shop and get used to us holding him back so we don’t cross paths with other people. He was very quiet and distant while we shopped and since then, has woken up most nights, saying he’s scared and to check that we’re still in our bed and wanting a hug.

I tried talking to Jake about how funny we looked in masks but didn’t get much reaction. It has to be bizarre for him to suddenly find everyone masked-up when he does finally go out, and not to understand what’s going on, why he and his sisters haven’t been to school for months, and why we are now cancelling our 3-day ‘road trip’ (like in Toy Story 4) because our city is in local lockdown again.

Thankfully, we grabbed a couple of days back in Wales just before our city went into further lockdown. Jake had a ball.

Indoors, he has also been shouting and screaming much more than usual. Bath time is never fun but we got through it on Monday until Jake decided he didn’t want to put on his pyjamas and went into a complete flat spin of screaming and hitting out. He calmed down eventually but not before biting a huge hole in his pyjama top (thank goodness for my enviable sewing skills).

We’re all just tired, of course, and, like everyone else, the fact we’re all at home and unable to do much is exacerbating every tiny stress and strain. On the plus side, we are taking a few days away from running the business and will recharge our batteries.

Jake at home

Hope everyone is doing OK during these crazy times. Jake is actually doing all right in our enforced lockdown. He is enjoying being at home, and the thought of having every day to play, draw pictures and tell stories (with a short walk outside) suits him well.

It later transpires that this sandwich is made with ketchup 👍🏼😬

As he is only seeing us, he’s relaxed and not having to hold in any behaviours so, again, that’s making him happy. He can bound from sofa to sofa and burn off spare energy when he wants.

We’ve given up trying to watch any TV programme in one sitting without Jake dashing backwards and forwards in front of the screen.

He doesn’t know why we have this extended break at home. We’ve tried to explain that he can’t go on the things at the playground because some people are poorly at the moment so everything needs cleaning from germs. He looks very bemused and momentarily like he might kick off, but then is easily distracted.

We have decided with school to keep Jake at home until at least September. It’s not fair on him or the staff to expect him to know why he has to keep a safe distance from his friends or why he has to wash his hands all the time. He continues to hit and scratch us if he gets frustrated and being in school in odd conditions will throw him and he will hit out.

The change in him over the past months is palpable. He’s much more relaxed and (mostly) calm. He gets to sleep in a bit longer (and in his own bed too – major win of the lockdown!) and can spend the day drawing pictures, making books, and playing with us and his sisters. Everything is recognisable and there are no surprises. He talks more and engages with us.

Just some of Jake’s collected works this lockdown

For the time being, this is enough. It’s hard getting and keeping his attention on home-schooled work, and we’re also working full-time running our business, so concentrating on his wellbeing and happiness are enough for the moment. To be honest, it’s an absolute joy having him and his sisters at home and his smiles and hugs are a welcome relief from the crazy world outside.

Walk on

Jake’s weekly horse ride has been cancelled for the last month because of the horrible weather. The stable is in beautiful countryside and next to the river, so it inevitably bears the brunt of the elements.

Jockey Jake

Yesterday though, we returned! Jake was fairly nonchalant about the whole affair, but when he saw his horse Billy again, he beamed his head off. When we first started going and it took a few weeks to progress from walking next to Billy to Jake actually wearing a helmet and then finally being persuaded to sit on him, he didn’t seem particularly attached to Billy. He’d probably never say it anyway. Then the day came when Billy was up in the field and Jake had a different horse to ride. In spite of a lot of cajoling and blatant bribery, he wouldn’t be persuaded to get up on the new horse and just about managed to walk next to her. The following week, Billy returned and they’ve been a team ever since.

Hi ho, Billy

With a bit of prompting, Jake will tell him to set off and to stop. He’ll stroke his mane and brush him. There’s a mirror at one side of the riding arena and Jake will always look at himself and Billy as they ride by.

Disgruntled Billy the red-nosed reindeer

Jake will either ride Billy up and down the lane (clocking up his mileage for his Endurance certificates) or they’ll get up to all sorts of manoeuvres in the arena, putting coloured hoops over cones or putting things in boxes en route. Now and again, Jake can be persuaded to give Billy a bit of a trot, but he’s still not too sure.

Loving a bit of bling

Jake and Billy have now earned seven rosettes from the RDA (Riding for the Disabled). His name appears in a national league table of distance riden (36 kilometres at the last tally) and the stable is one of the few places that he doesn’t need persuading to visit. The volunteers there are lovely, merrily braving the winds and drizzle to get the kids and their horses out and about.

There’s just something about being high up there on Billy, above the rest of us who are walking beside them both. We sing daft songs along the lane and catch up on the past week. Jake studiously ignores all this, as is his wont, and then sometimes I’ll look up at him as Billy is clip-clopping away, and he’s got the biggest smile on his face as we pass by the trees and the little streams that come down the hills.

Story time

This is a post about Jake’s writing. One of the goals in his Education, Health & Care Plan (EHCP) two years ago was to independently make a mark with a pen, pencil, crayon (anything!) on a piece of paper.

In Reception class, we’d eventually managed to cajole him into writing his name on a piece of wipeable card with his photo on it.

Although he liked painting, he showed zero interest in writing or colouring-in. We didn’t really know for sure whether he was right- or left-handed because he didn’t hold a pen for long enough. If we tried to encourage him, he’d put the pen in our hands and say ‘you write it?’

So this post is an indulgent celebration of how far he’s come.

Jake has just brought me a story that he’s written and illustrated. His obsession with ‘Five little monkeys jumping on the bed’ goes way back. Thankfully, we’ve got through the long stage of him wanting to spend every waking hour watching YouTube videos of every cartoon character EVER CREATED jumping with their four other friends on the bed. That was fun and a half. We’ll still find monkey toys lined up on his bed, all ready to jump. So, it’s only right that his first magnum opus is about those darn monkeys.

‘Mummy called the doctor….’

He’s since progressed to tales of his school friends falling in the bay and (thankfully) being rescued.

All from a boy that wasn’t too long ago learning with his brilliant Teaching Assistant how to hold a pencil in a writing grip, rather than a fist.

In addition to his drawings, he’s also confident enough to sound out letters to build words and willing to guess when he’s not sure.

I remember worrying that Jake might never hold a pen. Way back, I worried that he’d never speak in sentences or in context. Before that even, I worried that he wouldn’t acknowledge me. At the time, it felt like these things completely filled my head all the time, but he took a leap and now they’re part of everyday life so we don’t even think how huge they were. We obviously have a whole new set of worries at this stage in his life but maybe, in time, they’ll seem as remote and nebulous as Jake continues to smash through them.

Oscar and Jake

So, we got our new puppy Oscar just over three weeks ago.

As a family, we’ve had goldfish (one suicide, many clandestine replacements of dead ones and eventual muted celebrations when the last remaining one expired) and a cat (hit by a car after only a few weeks). In the spirit that things can only improve, we finally got ourselves a puppy. We have been thinking about getting a dog for years (to be honest, we took less deliberation about having our three kids) and, finally deciding that the time was never actually going to be 100% right, we took the plunge.

Oscar is a cockapoo, part cocker spaniel, part poodle, part plant-destroyer, part incontinent mentalist. Thankfully, he’s also the cutest dog ever which works in his favour.

We’d obviously read lots about dogs and the benefits to autistic kids, but were still a bit wary about how Jake would find our new furry lodger.

So far, so good. When Jake does engage with him, he finds Oscar hilarious. He strokes him (‘Oscar, you have a very hairy back’), has read him bedtime stories and finds it very funny when Oscar is just excited enough to run around with him without going too crazy.

Jake is copying some of the training that we’re doing, telling Oscar to sit down as if he’s a weary classroom teacher with an unruly pupil. His distribution of dog treats is pretty variable and Oscar can suddenly find himself with a mound of them for no particular reason, so we’re watching them both like hawks.

Oscar has his vaccinations this week and we can then take him out for walks. The puppy is going stir-crazy confined to home so will love it. We like to think that Jake will enjoy taking him for walks too.

It’s the start of the summer holidays today so many weeks for us all to really get used to one another. Jake has been hitting out again at school for the past couple of weeks. We are all baffled at the cause or reasoning after a long time of relative pacifism; hopefully Oscar will give him something else to focus on over the next six weeks.

On the school front, Jake has had a brilliant year. His writing and drawing have progressed hugely, and he’s become much more sociable with staff and his classmates. Apart from the periods of pushing and hitting, he has done so well, supported by an amazing teacher and his two fantastic teaching assistants.

At Sports Day last year, he ran around on his own (with a teaching assistant) and didn’t take much notice. This year, he ran a sprint and the egg & spoon race (even having time for a nonchalant wave to us as he ran past).

So, family and other animals, let the summer begin!