The lost mums club
Are you a member of the lost mums club? I certainly am I don't begrudge it I just don't feel the same anymore, being an Autism mum is the most rewarding ,difficult thing I've ever done, it forces changes in your life you didn't plan for or ask for ,and there's no thought in your mind to not take on the task as it's your job as a mum, and you want to be good at it and really give it everything and on paper that works, but you have to be open and honest about exhaustion mentally and physically, loss, what you sacrifice to do the Job at hand for yourself, your other children your relationship, Your friendships , your own sense of belonging, I'm going to document a few things that have impacted on my life as an Autism mum, and I'm calling it the lost mom's club because I know I'm not alone .💙🌈
I've recently been on holiday in Europe first Holland and then France and I think its not until you actually take a step out of your daily lives that it hits you how much of your lives are over ruled by Autism ,and how many compromises you have made to fully accept your future as a long term carer, I have fully accepted my path and Autism and my son is my focus, and it's now my revised life plan this I'm going to tell you has been hard to digest and slow anyone who hSnt struggled with this element isn't consider v their whole life it a grief for the other life you could have had I'm not going to lie it's a real struggle but you only get one life so you need to accept and live it to your best , prior to Autism I was able to plan my own life, just for me and I didn't have to compromise who I was to anything or anyone, I belonged to me and I do still belong to me kind of ,my thoughts are my own✔️ my time however and the path I must walk is not🌎 and that's ok but it leaves you feeling lost at points as. Isn't a choice, it's hard, it's emotional it's the most intense love you have ever felt, yet your alone, it's not reciprocated it's not understood, there an intense need for you 24/7 and the sunshine moments😃 the smallest inch of any reaction makes it all worth it, a look, a smile the smallest word the slightest look or signal of understanding makes me want to make this world a kinder place it's everything as I think there's hope there, it , makes me want to recruit for my awareness army even more, but in Autism I'm very much alone, my journey as his mum, and that's ok I've accepted ,his dad has his journey, and siblings too, but once you have fully accepted that you can't just make a plan on the spot, you can't howl with laughter at a film in the evening, as if he wakes up it's morning time😑 and you haven't been to bed yet!!!!! 48 hour shifts are overrated 😂
SO within this acceptance that you are not in control of your own time, Autism rules you, you can tweak the plan but you cant change the rules, don't fight it, don't you dare mess with that schedule as Autism doesnt play nice! You pick your battles as you think your working hard? What about my son who finds being himself hard? No issues he just wakes and the worlds too loud some days ! He's working so hard just to even get dressed and begin his day, and then you are just overwhelmed with so much love as you realise that Autism rules him too ,and it has it's hold on his ability to process information, be flexible, which impacts on our lives daily , we must adapt the world he lives in to allow him to function, us adults really don't have a hard time b comparison we live with Autism but my son lives Autism no breaks 24 hrs a day show can be being a tiny little bit gutted and have pity for myself be anything less than selfish? It's very emotionally abusive Autism parenting as there's just so much guilt . 😑
I call this parenting situation the lost mums club it can covers dads too and careers , its how I explain this emotionally Abusive relationship we keep with ourselves which is full if guilt and selfnessness yet we still beat ourselves up about even taking 5 minutes to ourselves in our lives we have accepted we are on our own in this.
For me personally it's the impromptu side of parenting I miss, you cant be spontaneous and accept a last minute invitation, you can't go out a little later say to watch the sunset it's a relaxing way to be, for me I've got used to it, if you dont get a lie in for 5 years you stop waiting for one! People do stop asking you to socialise unless it's planned well in advance, Holidays are not relaxing like they used to be, there fun but Autism in our house is busy, it's in a rush to explore this world, and all this might Sound like I'm unhappy , it's not at all, its fun, its a total change for us we live outside the box a little, and that's cool but recently on holiday, once 630pm came and it was medication time and the bedtime routine that set in stone it hit me,
I needed my husband and kids out of the apartment until he was asleep, he has pulled all nighters before when we have been away, it wasn't fun!!!!
Then I realised that there out having dinner, bowling! Having fun and I'm not included i am sat here in a tiny living space in the dark! Many situations like that on holiday it gves my other kids the chance to be themselves, not having to consider Oscar, to eat ice cream, to be silly to enjoy there holiday which makes my mum guilt less but also upsets me ,
The divide is so apparent, this transfers into our home life also ,where there are times that I need to keep the calm so he is happy and relaxed and have bedtime calmly, or to have the therapist come, all these things need to happen we meet all juggle things but we are united in that divide.
So many other parents sacrifice time with there other children or husbands or wives, not a chosen time a demanded time it's a lonely time we're you are alone, sometimes if odcar needs some us time just me and him if the days been full and he needs to regulate that's different but there gave been times I have missed friends weddings, birthdays, my Childrens performances or things that I have planned for others family events that I know full well I won't be able to take part in ,and I just tell myself it's for now it's not forever it's plainly my life right now as I know I'm not alone💙 . .
And I call it the lost mums club, because there's So many parents and carers that put themselves last ,not through choice but commitment and love many have the same routine of a new born for the entire life of their child, willing to do this accepting this role and somewhere in their there is person that once had freedom ,and the world at their feet maybe they wanted to travel? Study? Explore! Or in my case want to go out dancing one more time not checking my phone all night what the time is! , they have been given the highest responsibility as parents of disabled children and that my friends is more than love that is giving your life to enrich someone else hopefully .
That is willingly living your life that you didn't plan for,for your child and it alienates you, it has me for certain, so if your a parent or carer of a special needs child or a poorly child I salute you, I relate to the loneliness of the life you will never live, that you probably would feel guilty of living if given it anyway ,the choices you do not have and the courage and strength you have for the acceptance for your role as a carer .
For me it's been a pleasure to be given my gift my Oscar he's forcing us to view this world through fresh eyes, he's bought out in us and everyone around us a need to advocate for special needs and build our army to make the world kinder. And it's tough and at points lonely and mostly hilarious with tears of happiness and sadness we celebrate him and the love he brings and were thankful but to get to that place where we are today accepting, honest supportive of one another you have to be united in your divide it's unavoidable and the only way for everyone to get what they need in our family right now, we are willing to divide when needed and come back stronger after 💙