Throwing back my first ever blog post ,in light of recent coverage and expanding the be kind army💙💙💙
Starting a blog is alien to me, it’s very exposing and feels a tad self indulgent, It allows judgment something I refuse, but I feel now with the launch of Born Anxious my label free organic clothing label, I need to divulge who I am, where I’m coming from and what my aims are so here goes.
My own hero
My son Oscar is 5 years old he has a diagnosis of Autism, Developmental global delay, extreme anxiety and absence epilepsy in truth he’s kind of an onion, as the years go by another layer unveils and we have yet another label we are known by, don’t get me wrong we are not anti labels but they need to be in context, my sons name is Oscar, the diagnosis part for me was in my head the day someone held their hand out and said ‘it’s ok your not crazy, we’re all here to help you’
Because as a mum or dad when you get the feeling something isn’t right it eats away at you, they don’t reach their milestones you create a million reasons in your head why it’s ok, not all kids are the same right? But for us the issues we building, my child didn’t like people, places, couldn’t regulate emotions, poor eater, poor sleeper, wouldn’t play the list goes on, health visitors start noticing I get paranoid, I want to shut them all away he’s my perfect baby, don’t you dare say he’s not textbook! The denial began I would avoid meeting another mums, I was jealous, I found it hard, I think that began when Oscar failed his one year check between then and the failed 2 year check I kept him to myself, I was struggling but he was mine and I wasn’t sharing him, we spent days at home or out walking, even then we had developed a rather long list of things Oscar found overwhelming and we avoided, shops, programmes, facial expressions so many things looking back but I just adapted he was mine this is how he was and that was that.
But then came the failed two year check and a referral was made I always remember being extremely lonley around this time, as Oscar wasn’t the kind of baby I could take to groups, he would scream a lot or sleep even then he stood out, so we began the referral process for him to be assessed at the children’s assessment Center, again I didn’t really share this, it felt surreal I attended one appointment then again 6 months later I would attend alone and pretend they didn’t happen, we were told there was a chance he could be deaf as he was unresponsive to voices at 2 years old but his test came back his hearing was perfect, the assessment continued he had full blood genetic testing and an MRI the results took around 3 months and it was confirmed no result in the blood tests with any repeats in DNA, but lots of blue activity in the brain which indicates ASD Autism spectrum disorder , this day will stay with me forever it was just me and Oscar , I had stupidly thought it was check up ,and told my husband he didn’t need to attend as the more adults in the visits the more disruptive and distracted Oscar became, I didn’t really know anything about Autism at this time, so we go to the meeting enter the room and are met by the consultant and four others, all looking at us commenting how adorable Oscar is, they go for it no holding back tell me the results, ask me how I feel about it and tell me the diagnosis is firm he has Autism they gave me some advise leaflets, introduced me to my support worker April who was literally my guardian angel and asked me if I would like a place for Oscar at a therapeutic nursery, thats were we met Jane she was so positive and helped me filter in my mind what I had just been told, most of that day was a blur I just kept remembering the words life long, no cure for some reason I thanked them !and left, driving home I just felt numb and confused and impelled to research as much a I could.
Well that was three years ago we have gained a few other diagnosis since then as a few things overlap epilepsy can be connected to Autism as can ADD, ADHD, anxiety is part of autism but my Oscar has extreme anxiety, absence epilepsy or ADD ( attention deficit disorder) both can present with absences, we will learn more at a sleeping EEG.
In short I just roll with it take advise, and each time they hang yet another label on him I tool up, on diagnosis I sat and looked at my friendships in detail which were toxic, which were a two way street and I started to gather the tools I needed to live with autism, we got lucky amazing therapeutic nursery friendships, and support outlets were made and amazing mainstream nursery, no friends made except the staff and now he’s at school they stayed in his life and will be always, the key is invest, leave doors open be honest with people if you need a hug ask, not everyone lives with autism not everyone gets how much of the old you it removed, you miss it, I miss the old me she was carefree a tad crazy she had a social life and freedom, but I got promoted, autism mum the most rewarding job ever.
Theres no greater connection than between autism parents it’s just unsaid you get each other, there’s no judgment no questions they carry around guilt, fear, and a sadness that only another autism parent will understand, it’s a grief it never goes away, everyone says oh I wouldn’t change autism and I’m in that band too, but would I change the world for autism? yes, yes I would because you know what, my sons going to be an adult one day, will the world embrace him, I’m building his army now I’ve planned what happens if anything happens to me written endless lists about what he likes, what he doesn’t like and what hurts is if I wasn’t here would he miss me? No probably not but he would want all his things that comfort him around it affects him so much, we spend large amounts of the day working on keeping Oscar in that ok state, so we can function otherwise he has meltdowns that are so severe autism is holding you prisoner, I have learned it’s worth the preparation and it’s army style, I wake at 5 am do a workout dvd just quick I hate my belly, then I prepare oscars medication, complete his school healthlog from the night before, do three pack lunches each of my kids are fussy as hell so it’s not easy, prep oscars change mat nappy cream ect laptop ready with his breakfast buiscuits and correct song on so he starts the day happy, I shower put my face on pack my bag, write my day list as I’m sure you can all relate to autism mum fogg! and give my older two a 15 minute call, as soon as there’s movement Oscar wakes the next hour belongs to him, I need him to start his day happy, we split then, one with Oscar one with other two and our day begins, I can honestly say in the last 5 years I have not had a lay in, in my own bed I took a 4 day break last year which I almost talked myself out off, which to be honest as charged me for the next five, I got drunk, I was silly, I was selfish it was what I needed and Oscar had his routine planned like an army operation he was with his dad I don’t think he even noticed I was gone! But that’s autism I missed him like crazy never left him overnight before but I was so glad, I did, I was shiny new.
So that’s an insight into my day to day, medication, padding out the day to avoid negativity, making sure my other kids get enough of me which I’m conscious off and make sure we get time also, I imagine all autism parents to be as mentally busy as myself that’s why I have the upmost respect for them, it’s not a pity post at all it’s my future for now I’ve accepted it, I have support, I have amazing family and friendships old and new, Autism is an amazing community I didn’t know existed before I’m glad to be in it. 💙💙 but the world needs to be kinder not just for autism but in general there’s lots of disabilities which all have abilities and they can be overlooked.
So we plod on recruiting our army you can never be supported, or supportive enough we have open hearts open minds , we’re totally exhausted mind and body wise ,but that’s part of it we’re enjoying parenting the wildcard we have been dealt, we don’t profess to know it all we’re learning everyday and the way I see it is I only need to know about my child I’m the expert of him, I will learn more as the years go by and honestly am I ok? No but I’m working on it, I get sad, I get lonely but thats me not others as this is my journey as his mum ,I look at the whole picture not the right now, right now as long as there’s no blood or poo we’re good.
I can be impatient with people I feel I know best ,but I have learned I don’t, you have to let people in , not push them away be brave enough to answer honestly if your having an off day.
So as Oscar approached starting school my 16 year directorship at a fostering agency was finished, I was jobless for the first time ever, and that I did not like!!!! But it came at a great time for me I had become oscars PA my life was only about his appointments which were crazy almost daily, I had lost myself, I needed to create something, then I came up with born anxious 💙 a label free organic clothing line, I was sick of people staring at Oscar while we were out in soft play or he’s headbutting on a sunny day while other people’s kids are sat on the beach I walk up and down it, or refusing to leave the park screaming like I’m trying to obduct him , most people are kind but not everyone is, Oscar once hand wiped sand front and back on a large lady’s bottom in France at a swimming pool then ran off , my husband got the blame it was hilarious😂 but if he had a t shirt on saying butt grabber autism aware , it might have been explainable so my idea and motifs are to help in public places or when meeting new people, anxious children/young people can be mistaken for defiant.
Anxious children can present some very unpredictable behaviour I’ve lost count of the times I have had to remove Oscar from something in public and the looks! You scurry off I’ve been stepped over in the early days mid meltdown in a park, I’m being attacked by my child and you don’t ask if I’m ok! This is a rare thing but it happens, I just feel as much awareness as possible with anything that involves the public, places and new experiences can only ever help so my idea is to begin with t shirts that use.
Organic and label free materials and no labels they are an issue for us, and many other ASD sufferers.
Quirky slogans, cute slogans, serious slogans anything to give warning but also so people are informed and give those who need it a wide birth.
I like my kids to look nice they like to look nice too I want born anxious to be something I think self awareness and pride comes into it here.
Not only for people to wear to raise awareness but I hope the messages on the back can help parents and the person wearing it, I want it to be something that multi purpose a fashion label for people with disabilities for them, modelled on them, modelled by them that is for them , that people can support by also wearing as there organic and label free which is an irritation most people have with clothes, from each sale I wanted to give back to people that helped me in the early days the dark phase, the days I was trying to fix autism and shut the world out, there’s no manual I just followed my instincts protection, buy as much therapy as I could and hope for the best, Oscar has been like peeling an onion layers upon layers it’s still unpeeling.
It was Kent portage that helped me so much in the early days my baby would just sit staring into space or scream for what seemed no reason at all, they came spent time with us helped, Oscar learn to play and set him achievable goals taught me to go for progress not perfection, helped me understand how varying the spectrum is and gave alternatives to methods I used with my nurotypical children, they gave me perspective and most of all goals, small but achievable goals, they taught me to work with what you have and never give up.
So Kent portage and the Kent autistic trust are going to recieve a donation from the sales they both do amazing work for people with additional needs such as autism.
So there we have it my introduction, my history, why I have created born anxious, how I’m accepting my son for who he is and his autism and hopefully helping other parents relate to the guilt and sadness that’s all part of being an ASD parent, and how I put my spin of normalising autism into our family, inclusion is so important we do not shut away, we do everything everybody else does just with careful planning and visual clues, we may only do half a day out but we still do them, we’re dysfunctional we laugh we travel, we experience ,we bond, but we may need tweaks, firmer routines we make allowances, we have or try to have low level responses to crisis! We’re just doing what we can one things for sure Autism will never win in our house.
My hopes for the label and the future.
I hope the label creates a following, and puts autism on the map for sensory clothing, the uses for the T-shirt’s help in so many areas for me as a parent anyway, it’s important that his caregivers know he doesn’t like loud noise if he’s not met them before, or he’s unpredictable no two kids are the same ASD or not, it’s also as important that the clothing is kind to skin as clothing can trigger very bad days for us, and my non verbal child can’t express himself, it’s such a simple thing with dramatic effect, if it’s not right, I’m hoping in the future Oscar can take over at born anxious ,and have security and feel part of something that was inspired by him , I hope born anxious can do this for others to.
So that’s us, please look at the range a lot of time and love has gone in ,it’s going to expand as I have so many ideas, the blog isn’t just about the clothing it’s not just about Oscar either it’s about me, my experience of it all, how I’m working with what I have, networking and building my army and giving back, and also raising two other amazing beings my older two children who are great advocates for special needs, and how we normalise autism into our daily lives, it may occasionally mention my husband who’s long suffering, very laid back and I think still wondering what the hells happened! From his birth perhaps!😂he’s bewildered but a great guy passive and a lovely dad, I hugely suffer from princess syndrome he just nods along ( good job really) Autism is very hard on relationships those who say it’s all rosey are liars, but you have to at least be on the same team, I’m not sure we’re on the same page but we’re defiantly reading the same book, and you know what he has his own journey I have huge respect for him.
Autism is life long I need to prepare for when he isn’t cute anymore so I’m starting now I once said firing the EHCP process that knowone would adopt him without a photo on the bad days! I meant it.
To all my autism parent pals getting it right, getting it wrong, but getting back up I respect you with my whole heart, never give up we got this. For me I have no choice so I’m doing it my way.