Born Anxious and the daily doings. A guest blog for The Kent Autistic Trust By Kellie Barker



I'm delighted to write a Guest blog for the Kent Autistic trust, I'm not a Professional blogger by any means, so no judging please!!!


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, more fulfillment to name a few.


I battled in the early stages trying to figure out how my sons Autism worked, trying to adapt, 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 were 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, No rules, refuse judgment, 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 curve balled by a Bundle of amazingness, we got our confidence, we began seeking support building our emotional tool kit it , was backing 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 of 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 there having a crap day, talk to them lighten there load, for all you know they might be in the assessment centre with there 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 mths old( 2014), Oscar failed his one year check, being a mum to two kids already I just though 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 quiet 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 nick name 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 honesty I still wasn't thinking Autism, at this point I did start to notice absences we're he would drift into a trance , he had, had a head injury at 9 months old he tipped a temporary highchair up hit his head hard and was obvious for ages, it was terrifying ,but hadn't seemed different after!!he was kept in hospital and discharged, in my mind I then started to worry about brain injury and it became a huge factor in his assessment and 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 relived 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, stopped drinking from a sippy cup over night , 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 at 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 feeding clinic, by this point we were at the assessment center every day, and I had to make the decision to quit my job in fostering, and concentrate on Oscars 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, we'll 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, Oscars 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's 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, 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 traumatised sed 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 many times we have doubted ourselves and referred back to the advise 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 in the community, and the lack of general kindness for anyone with hidden disabilities, it was a slow start, Oscar always 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 my other two children, who love socialising and attend 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! As ,from the outside looking in on Autism it can present as naughty, unwilling, spoiled behaviour ,and if people dont 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 Awareness and inclusion, it's taken seriously we are all consistent in this belief, it's not something we visit, we live it that myself and Brendan and extended on then into our two oldest children, it's just simply become our normal.

As for everything else ,we make all therapies and appointments on time, everything else we are late😂, but we arrive regulated and very together, lots of prep time and forward planning, we go at Oscars pace, our tempo is fast as a family we are busy, we are doers, we always spend Sundays together as a unit, but its Oscars 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 were it can be a bit of a poor show, but weekends is family time, no work.


Mon-friday term time a typical day for me would be alarm at 545, I need an hour alone in the mornings to prep Oscars meds, 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 645 I start to make noise, its best if Oscar wakes naturally he is usually awake by 7 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 wiling, 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! DH hair trousers cause lots of anxiety to me and to Oscar😂.


So once this is done we have approx 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 very intense, lots of control and we need to just tread those egg shells 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 745 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, older two go to school with dad, we w 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, he can due to a abscent seizures not recognise us ,and attacks us in the car if woken up so lots of distractions in the car, I pad, tablet all to hand, should he start drifting off we distract him.


Once Oscars safely in the building I then plan my day I have 10-2 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 cant remember the last time I didn't roll a list over from one day to the next, but that's ok it's Important yo be able to prioritise as there's one thing for sure I'm not getting dressed about things I can control, a huge plus for us with bring an Autism house is that its slowly yea hing us just how important time really is, at 6 already it just proves time doesn't wait fur 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 be proactive, be transparent, admit when you need help, most of all be kind to yourself and others.


The go to in this blog sums us up it was Friday, 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 is at wanted me and wouldn't wait, I had my other don asking 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 n the hole I think he must is starting to clear the difference now I refuse judgment is it gets done if there's no pressure I have found put actually everything he's done in the end and it's so true . .


Article from: https://www.bornanxious.co.uk/…/lyo8umi109sdc5oxo1d92qfdkho….

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