Updated: Sep 26
I want to share our story with you and give insight into what is driving us, and the many benefits to be had adopting an autistic diverse way of thinking, personally for me many pluses, less stress, and more fulfillment to name a few. I battled in the early stages trying to figure out how my son's autism worked, trying to adapt, and in honesty trying to change it to our way, but as our way became more and more of a memory there was a turning point where I thought, you know what, this is literally painful, I had built myself a prison. I then started to adopt flexible thinking and then it clicked, we must do what works for us, with no rules, refuse judgment, and pick our battles, then with that became liberation, our journey, our rules. Once we had accepted that it's ok to not have a plan, our 2.4 worry-free days had been curveballed by a bundle of amazingness, we got our confidence, we began seeking support building our emotional tool kit, it was becoming more apparent, we needed this to succeed, our truth is, we know that everyone counts, we simply can't do this alone. We are not experts in autism, but we are experts in our own child, we all are, but we need the valuable experience of parents that have walked this path, and in turn, we extend that hand to those who walk after us, the key? Honesty, do not justify your diagnosis, ask if you feel you need more help, speak out respectfully if you feel the services are not enough, and ultimately look for the support, identify it, seek out support groups, talk, be open, plan ahead, celebrate everything, admit defeat, evaluate what went wrong, keep all lines of communication open and most of all give back, if you see another parent struggling or looking like they're having a crap day, talk to them lighten their load, for all you know they might be in the assessment center with their child on no sleep feeling helpless, feeling down, you might be the only person they speak too, share your stories, share your hope, be positive, yes that's right!!!!! I'm the weirdo mum that talks to everyone, but you know what, if it helps you or annoys you at least I tried. We simply are more powerful than we know, we must celebrate our skills, and bless others with our presence, we all fight for our children to have a presence in this world, we can’t do this by hiding away ❤️ Our autism journey began much to my denial at 12 months old (2014), Oscar failed his one-year check, being a mum to two kids already I just thought Oscar was content, greedy, and not needy, his siblings did everything for him, he was happy, I hadn't noticed he hadn't reached any of his milestones really, he could run at ten months, seemed happy, ate well, slept well, seemed quite responsive at that point, it was after that he began to regress, he didn't point, clap or wave at his first milestone check which lead to his referral, and he liked to be alone but again we just thought he was content, his nickname was Robobaby, his routines he had developed well, little did we know that his routine would be the same 6 years later!!!
He was checked again around 18 months and failed again and was referred, but in all honesty, I still wasn't thinking of autism, at this point, I did start to notice absences where he would drift into a trance, he had had a head injury at 9 months old when he tipped a temporary highchair up, hit his head very hard and was unconscious for ages, it was terrifying, but hadn't seemed different after!! He was kept in the hospital and discharged, in my mind I then started to worry about brain injury and it became a huge factor in his assessment, an MRI scan was arranged he was seen over 6 months by the same consultant, and MRI and blood cultures came back fine for brain injury, but did come back blue activity in the brain showing on MRI he was diagnosed with autism, at this point we were relieved it wasn’t a brain injury, and then our autism journey began. We had our first regression at around two years old, he stopped sleeping and stopped drinking from a sippy cup overnight, and he started to develop more autistic traits, rituals, obsessions, and no speech forming, as he grew older, we were noticing more, he also started to have more and more absences and had decreased with eating, we were at this point very well supported by our consultant! He was registered at the nursery in the hospital and would have two sessions a week for observation, he completed this for two years,
with his goal still being to tolerate others being near him, after two years he had huge sensory needs and was diagnosed and medicated for seizures and extreme anxiety, he was also referred to the feeding clinic, by this point we were at the assessment center every day for one thing or another, and I had to make the decision to quit my job in fostering, and concentrate on Oscar’s health needs. I had worked in fostering matching children to families for 16 years, I was very committed and good at my job, I got a lot from it, and it wasn't easy to give those commitments up, well it was easy to put Oscar first of course but not so easy walking away, and passing down my lucky pen collection, but I did so, I survived and I had a new focus, Oscar’s health plan, my biggest challenge yet, I had minimal knowledge and experience of autism before and it was my mission to tool up. Advocating came naturally to me but this was a brand new challenge, behaviours we're manifesting, controlling us as a family, but we developed strategies, it was time to take our own advice, both of us work/worked in fostering, advising others how to manage complex care, it was now time to practice what we preach, and many times I would revert to that, we would say behaviours are feelings pouring out, every single one has a cause, apply low level responses, do not expect anything in return, do not expect a thank-you or a sorry, you have to like the child behaviours included, the child is frightened, the more I thought about every single one of my responses to manage the care of a traumatized LAC child, I was able to apply that to Oscar and his autism and so we began gaining his trust, left our emotions at the door, and began the first part of our journey, many times we have doubted ourselves and referred back to the advice we once gave out, and just felt grateful really for all those experiences. Do we know it all? No, how could we? Do we get it right all the time? No, no we don't, autism is unpredictable but we hold confidence we do know our child, and sometimes if he is behaving like he doesn't know us that's ok, we're confident to now know it's ok, to get it wrong as long as your moving forward, speeds irrelevant, something that's vital I've learned is don't compare, do not compare your child to others they all develop at different rates, autism or not, and sometimes if you get the time you reflect and then notice how far you have come.
The reason I set up Born Anxious and what drives me and how we work daily, make of this what you will 😃
I set up Born Anxious in 2018 because I was growing increasingly more annoyed at the lack of autism awareness and acceptance in the community, and the lack of general kindness for anyone with hidden disabilities, it was a slow start, Oscar always has been extreme in behaviours partly due to his anxiety, he can scream, lash out, runaway, attack you, become uncontrollably upset for no reason and headbang and self-harm, these are some of the behaviours he can present with.
We are already a busy family at this point with my other two children, who love socialising and attending sports clubs, and what I found was the world wasn’t really that tolerant of autism or additional needs, people would stare, point, comment that I should smack him!
From the outside looking in on autism it can present as naughty, unwilling, spoiled behaviour, and if people don’t understand they judge, we made a joke once, Oscar needed to come with a warning so I decided to make him a “be kind I have autism” t-shirt, it had such a huge impact on the attitude towards him, and that was the very beginning if it all, due to sensory issues I removed the labels and only used organic fabrics. Who would have thought that my idea would have grown so much, into a full website with over 20 designs, we now have a fully functional very busy expanding website that ships worldwide and donates to three autism charities monthly.
A day in my world An insight into my world is chaotic, hilarious, dysfunctional and it works for us😃 one thing we say is we do not sweat the small stuff, we're too busy. The one thing that's a consistent theme is autism acceptance and inclusion is taken seriously, we are all consistent in this belief, it's not something we visit.
As for everything else, we make all therapies and appointments on time, everything else we are late😂, but we arrive regulated and very together, with lots of prep time and forward planning, we go at Oscar’s pace, and our tempo is fast and as a family we are busy, we are doers, we always spend Sundays together as a unit, but its Oscar’s best we all do what's best for him. Saturdays we ensure each older child gets one-to-one, just to keep them emotionally fed, we do get days where it can be a bit of a poor show, but weekends are family time, no work.
Monday to Friday term time a typical day for me would b
e alarm at 05:45, I need an hour alone in the mornings to prep Oscar’s meds, and wake myself up, I do not wake well, I have an attitude problem for at least half an hour!
I prep lunches, education, make sure devices are on charge, attempt to make myself look human, then slowly around 06:45 I start to make noise, its best if Oscar wakes naturally but he is usually awake by 07:00, he gets dressed in his room before he has time to remember that he doesn't like it, we do washes after breakfast and this way he is willing, no meltdowns, we sometimes need to get changed again also!😳, Brendan goes downstairs to hoover, because Oscar spends lots of time on the floor and we have two dogs! Dog hair trousers cause lots of anxiety to me and to Oscar😂.
So once this is done we have approximately an hour to make sure we're calm, ready to eat, take meds, drink, keep a constant stream of his chosen TV programmes on just to make sure he is ready for the journey, in the car to school it's a knife edge in the mornings, mood-wise, until the meds kick in, he has waves of watching one thing over and over if it changes on iPlayer, he will have a full meltdown and on a school day that’s game over!
So lots of control and we need to just tread those eggshells and get through the routine, it's a two-man job, our other two kids stay out of his way with one of us in the kitchen area, not because they want too but because it works, medications start kicking in around 07:45 so Oscar is more approachable after this time, the other kids have to go to a day of learning so it's vital to keep calm in the mornings, the older two go to school with dad, I go door to door with Oscar, the school run is an hour without stopping, his medication can make him sleepy at first, this isn't fun if he falls asleep, and he can due to absent seizures not recognise us, and attacks us in the car if woken up so lots of distractions in the car, iPad, tablet all to hand, should he start drifting off we distract him.
Once Oscar’s safely in the building I then plan my day I have 10:00 – 14:00 to run errands, post any orders, plan media posts, order stock, and do general house jobs and all the general jobs a mum of three kids gets up too, in truth it's never long enough, I'm the Queen of lists I can’t remember the last time I didn't roll a list over from one day to the next, but that's ok as it's important to be able to prioritise as there's one thing for sure I'm not getting stressed about things I can’t control, a huge plus for us with being an autism house is that its slowly showing us just how important time really is, at 6 already it just proves time doesn't wait for anyone, you can get on the train you can get off momentarily but it's not stopping, do you find that balance in the unbalanced? And make the time count to be proactive, be transparent, admit when you need help, and most of all be kind to yourself and others.
The photo in this blog sums us up! it was Friday, and Oscar was being really hyper he had Friday vibes, I had noticed we were almost out of nappies and had forgotten and I needed to send an SOS text to my husband who passes Tesco on the way home, but Oscar wanted me and wouldn't wait, I had my other son asked me why he only had one sports sock, dinner cooking, orders coming through, almost no nappies and a child hanging off my clothes but you just have to juggle and keep your cool.
Every single day I run out of time! I'm super busy just being a mum before adding anything else, we have our bad days but on the whole, I think we are starting to feel the difference now, I refuse judgment as it gets done if there's no pressure, I have found actually everything gets done in the end and it's so true.