The boy has a tutor! Another grown-up whom he spends time with that isn’t us!!
It’s taken a lot of fighting and many stop-starts but the local authority finally agreed that having a tutor work with Jake at home was the best option for him right now.
We’re up to an hour’s session a couple of times a week, and he is happy to see her and likes working with her. They’re doing all sorts!
Yesterday, they built a gingerbread house after Jake had written out the instructions. Today, they played a Gruffalo game, drew a very smiley horse, wrote a bit about it, and then read the Three Billy Goats Gruff (complete with character voices throughout).
He moans and groans first thing, and says he doesn’t want to see her, but it doesn’t last long.
Over the past few months, before we finally got the green light, he’s been on roll at a high school that he’s never set foot in. We had to take him every week so he could be seen by staff, meeting in a nearby park & cafe. We don’t miss that two hours out of our schedule.
And it’s not really about what he’s learning, but he’s loving all his favourite fairy tales (still obsessed) and it’s a step forward getting him used to another adult, especially one who is asking him to do stuff. One of us sits in the room with them both (while the other sits with our jumpy, barky dog in another room), but we can tap away quietly on our laptops and leave them to it.
We will be building the time up as we go along.
Still couldn’t get him to sit-in at the local burger place tonight, but at least we got him out of the house. Small wins at the moment.
Well, I say that but there’s currently no school as such for Jake.
He’s been home with us since January, and work and everything else has sort of fitted into place around him. He has needed a lot of time to reacclimatise so, before the summer, we weren’t running a full timetable and he has probably drawn about 4,000,000 books of his favourite fairy tales, but now, he is very relaxed and happy. With a bit of cajoling, we can get him out of the house every day and he will navigate a busy supermarket.
Ignore the wine in the background
Back in December, every morning involved him asking ‘is it not school?’ and if it was, depending on the morning, we would have screaming, crying, hitting, and kicking. Having then refused to eat any breakfast because he was crying or heaving so much, we might eventually cajole him into the car (with a few kicks of the car door on the way) where he’d sit in sad silence for the journey to school. As he recognised the turn up the hill to the school, he’d start shouting ‘NO SCHOOL!!’ until he was back to a crying and screaming mess by the time we pulled into the car park. Then we’d have to negotiate and make all sorts of promises to get him into the school yard. Towards the last few months before he finished, we would have to leave Jake in the playground as his teachers tried to get him into the building whilst he screamed and cried. When he got into the school day, he retreated into himself and was quiet all day. By the time he got home, having not eaten any lunch, he’d be like a rocket going off.
So, here we are, back in September and the imminent start of school (Jake should be starting in a new high school next week) has passed us by.
We eventually had a Zoom meeting with the local authority who want him back in a school setting. We have appealed that he needs an alternative provision right now, based here but getting a few tutors in for an hour or two so he will get used to someone else and not so attached to us full-time.
We are waiting to see what happens next but it’s likely that the LA will propose another school and we will appeal again, eventually getting to a tribunal where we will have to fight our case about why we don’t think that a traditional school will fit with Jake at the moment.
Like most other parents of SEN kids, we have fought and pushed for Jake since he was tiny (and I definitely use the royal ‘we’ here, because Sally should have been a barrister – or serial killer – in another life). So we shall see what happens when his new school realise that he hasn’t shown up this week.
But, in brighter news, he is happy and he’s loving being at home. He has one school friend that he clicked with, and we see him occasionally for the cinema or trampolining. We have a big family so Jake sees his cousins regularly and avoids becoming a complete hermit.
And we do Waterstones, supermarkets and regular walks. He loves searching around in the props room of our local theatre and feels very comfortable there. We’re baking together and, even though I have now been reading the same book to him EVERY NIGHT since November, he goes to sleep a happy boy.
We’ve had a bumpy ride since the autumn, losing Sal’s dad and getting used to both Martha and Beth being away at university. Jake hasn’t had a good time with school, shouting and screaming as soon as he realises he’s due to go, sometimes hitting us and kicking the car on his way out. Since before Christmas, we have had to leave him in the school playground as his teachers try to convince him to come into the building whilst we walk away with his shouts after us ringing in our ears. We’ve then had many a tearful drive back home, all ready to start work again by half nine.
When Jake was in Year One, we ended up having a mediation meeting with the local authority and his then-school to debate the possibility of having a flexi-school arrangement whereby he’d be in school a couple of days a week and at home with us for the remainder. We had put together a full programme of activities with different subject experts coming in to supplement our attempts. It was turned down because the LA insisted that a head teacher had to have responsibility for Jake throughout the week, even when he was learning at home with us. School, quite understandably, couldn’t sign up to such an arrangement, so Jake got stuck back in full-time schooling.
We said at the time that this setup would reduce his anxiety to such an extent that we’d avoid a full-on pressure cooker overloading explosion further down the line. They still said no.
Well, dear reader, in circumstances that nobody could have seen coming, Jake is currently a school-refuser. Having spent the intervening years masking a lot of stress and anxiety, he’s finally exploded. We now can’t even mention school without tears, shouting and meltdowns.
It has been nearly two months now since we last got him to the school building, but he was so upset and anxious that we just had to bring him home again. He also stopped eating after Christmas, gagging over his breakfast cereal and leaving his packed lunch so that school were worried that he might faint.
We also found out a few weeks ago that he hasn’t got a place at the local special high school that we’d requested. Instead he has a place at another special school that is even further away than his current primary. We are going to appeal, although whether we can actually get him to either place in September anyway remains to be seen.
His current teachers have been fantastic, supportive and willing to try different things to help Jake and us. We don’t know whether his anxiety will reduce from its current place high in the sky, but we need to discuss how we will cope and change what we are doing with our work.
We have very little reserves left at the moment.
Seeing Jake happy, smiling and relaxed is wonderful. He’s more receptive to learning things and he’s much calmer these days. That, of course, is the really important thing. We now need to craft the rest of our lives to make sure that can continue.
How are we only a few weeks away from the summer holidays and Jake will have finished a whole year at his new school?
The eagle-eyed among you will notice that I’ve been a bit tardy with the ol’ blog posts. Truth is, it’s been very busy and quite an adjustment from the 10 minute walk to his previous place to a 40 minute commute. Sally and I take it in turns to do the ferrying around (thank God we work for ourselves. No boss would be that accommodating), but it does mean we have shorter working days.
The lovely news is that – most of the time – Jake really likes his school. We can still have a bit of screaming, wailing, kicking and punching (we’ve learned to move like butterflies, don’t worry) but, on the whole, he’s happy.
His needs are probably more profound than the majority of his classmates. They can set up and follow rules to games that he blissfully ignores and instead runs where the whimsy takes him, and he can’t manage a broader conversation about what he watched on telly last night or what he had for his dinner.
But the kids are friendly and welcoming. They include him, just like they do all the other kids. They’re not particularly bothered about being cool and so there don’t seem to be cliques. It’s the way it should be.
He loves going swimming and his days are packed with things to do. Every week on ‘Wonderful Wednesday’, the whole school have a crack at ‘Jason’s Wednesday Challenge’ and Jake has made all sorts. He’s painting, making food, he’s getting a bounce in the soft play room, and his teachers and teaching assistants are guiding him through his literacy and numeracy.
For World Book Day this year, he not only dressed up but was STILL WEARING his Fantastic Mr Fox outfit into the evening.
He has another year at this school before high school comes calling in 2024. We know where we’d like him to go and hope that we can get him in.
Choosing to move him from mainstream to special school was a big decision for us all. It’s not without the emotional rollercoaster to which we’re accustomed, but it’s been a good move for him.
I thought this might be useful to share to chart some timescales if you’re just starting the whole assessment process.
Bear in mind this is specific to us, to the UK, and the ups & downs of our health authority. It was also a few years ago so I’m sure timescales and waiting times are greatly improved these days 😉
Summer 2014 (Jake is just over two)
GP appointment due to J’s delayed speech, lack of focus and eye contact, and funny food things. Told not to worry and see what happens, and that the GP’s daughter is also a ‘fussy eater’ who struggles with pasta. Good to know.
Referred to speech therapy.
Sept-Dec 2014 (Jake 2.5yrs)
Initial speech therapy. J studiously ignores the poor woman trying to get him to look at a dirty doll with only one eye. He notices the Jack in a Box though and we’re sent away with a list of words to focus on each week.
December 2015 (Jake 3.5 yrs)
Speech therapy review. Not much progress. Jake will say more single words, may put a couple together occasionally, and will recite whole scenes from Peppa Pig 🐷. Thankfully the one-eyed dolly doesn’t reappear. We go through a list of words, ticking off the ones that we know he uses and wracking our brains to work out if we are just misremembering him using lots of others.
Jan-Mar 2016 (Jake 3 and 3/4)
School meetings. Jake’s Foundation 1 (Nursery) teacher and teaching assistant are splendid. His teacher puts together a supporting letter about Jake in the classroom, all ready for the hospital to get involved. Lots about him playing on his own, pretty much ignoring the other kids, and chatting away to himself all day.
April 2016 (Jake nearly 4)
Initial paediatric consultant meeting. Jake LOVES the fact that she has so many toys. Merrily ignores her and the nurse to move from one new toy to another. Finally we meet someone who has worked with lots of kids with autism. It’s like finding someone who speaks the same language.
May-July 2016 (Jake 4 yrs)
Early interaction group. Next stage speech therapy to encourage interaction, communication and sharing. Jake and another lovely lad take turns to play with bean bags, microphones and the Jack in a Box. Jake still resolutely ignores another poor woman trying to get him to make eye contact with her.
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.
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.
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.
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?
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….
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.
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.
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.
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.
Summer 2014 (Jake is just over two)
Sept-Dec 2014 (Jake 2.5yrs)
December 2015 (Jake 3.5 yrs)
Jan-Mar 2016 (Jake 3 and 3/4)
April 2016 (Jake nearly 4)
Jake and his dad 
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