The realities of being an Autism Mummy

Sometimes survival is all we can expect

Being a mum is hard at the best of times, having a nearly 4 year old and an 18m old has its challenges, well….. I say challenges, sometimes I just want to lock them in the garage and run away but I love them dearly and I have everything I ever wanted. But when Autism is also part of the family its makes life just that little bit harder, more frustrating, upsetting and sometimes heartbreaking.

Starting our Autism journey nearly 3 years ago, its become the our ‘Normal’ to expect the unexpected. With that said, i would be lying if i didn't dream of what having a neurotypical child would be like. I spent the early years of motherhood celebrating every milestone, watching eagle eyed for the first smile, the first steps and then the first words… but for us, that never came. Its easy for on lookers to see a perfectly normal happy looking child with his own weird and wild personality but in my head there is so much more that's going on, to think about, to plan. In Teds case milestones were lengthy or non existent. He cant speak, he cant use cutlery, he struggles to communicate, he cant talk, and with that it brings endless barriers and issues. It sounds sad to think about all the things that Ted cant do but i can think of 100 hindered more things he can. He has the best belly laugh which is uncontrollable and can pull you out of the darkest moments, He is agile, he can dodge his little brother and leap over a toy in his path like he is in the Grand National. He has an AMAZING memory. He gets excited over the smallest things and gives the biggest reaction. Something as small as a favourite episode or a bubble lamp. The joy on his face is immense and so extreme he needs to expel all that energy but running around non stop or rolling on the floor. Its moment like that when i put things into perspective. BE MORE TED!!!! cherish the small things, get excited so much that you physically have to expel it and share it with the world. Understanding what makes you happy, what you prefer and not settling for anything less.

With Autism comes appointments… Speech and language, Paediatricians, Genetics, SENCOS, Schools, Dieticians the list is endless and with that comes paperwork, DLA, EHCP, IEPs etc so many acronyms I’m sure there isn’t a letter in the alphabet that isn’t covered. Its tiring, its exhausting and its frustrated and you are directed to constantly identify what your child cant do, what’s wrong with them and how they are different from their peers. I cant deny that i haven’t looked at his peers and thought about how easy they have it, how far they have come or wonder what their futures will be like. It can be heart breaking seeing friends on FB gushing over their children saying “Mummy” or baking cakes together or learning new skills. I do and i wish i had that. But then i see what i can do with Ted. I can watch him grow, i can celebrate the small milestones which seem like we have won the lottery. I can look in wonder how he problem solves and learns how to use his Tablet. He amazes me everyday.

As Ted gets older and stronger it can be more difficult. As he struggles to talk he gets frustrated, he pushes, shoves when he cant communicate what he wants, what he needs, tell mummy that he is poorly or tired or scared. Thats hard. I've cried after my 4 year old has pushed me so hard in the chest its winded me and i know there is nothing neither of us can do about it because neither of us know how to communicate with each other. Its hard not having people around that understand, that ‘get it’. Thinking your a bad mum because the one thing you are meant to do as a parent is to support your child and help them grow, i feel that's a struggle everyday. I’m not looking for pity but just telling my story may give a little insight into some of the difficulties we face away from social media, the public or in the classroom. Its easy to take a snap shot of the perfect family for instagram, but what you dont see if the carnage that came before. Things can get really difficult but at the same time i LOVE MY LIFE!!!! i love what it has taught me, what i have learnt and what i have.

I think what my biggest bug bare is when people say “Its not that bad” or “He’s pretty easy really, he just likes his own space”. If you don’t spend enough time with my child… do not make judgements. ASK!!! ask how we are, how we have been, is there anything we can do to help. Don’t presume. NEVER presume in any case. Not just with additional needs but in any situation. you don’t know what a family is going through. As a parent you have so many people involved (on paper anyway) and you think that its great because you will get the support you and your child need, however in reality YOU are the one that has to deliver the programme, the strategies and the support. Take Speech Therapy. We saw her once for an hour every 8 weeks. Within that 8 weeks i was suppose t teach him a communication method, complete tasks for turn taking and teach him to dress himself and this was before lockdown. The issue with that is….. I don’t have the time, skills or knowledge to do that. I have a job, 2 children and I’m a wife. On top of that role I’m meant to be a Therapist, Psychologist, Administrator, Fundraiser and a supervisor. Its not that simple.

It can be REALLY bloody hard sometimes, but i would do anything for my boys, simple!!! What i have come to realise is that i can only do what i can do, we do our best to be the best parents that we can be, but i want Ted to be a child. I want him to be who he is, do what he wants. Not to feel the need to mask or conform to our social rules and laws. I want him to live in a world where he is proud of being who he is. The world can be a cruel place where we are judged on our differences, not celebrated for what our differences bring to the world. I fear that he will not be accepted, he will be isolated and judged. I have always been the type of person that is very open to talking about Teds differences because i think it allows people to understand, to see the reasons behind some of his quirky behaviours. I encourage people to talk, to ask why he isn't responding or he has to follow a certain ritual/ route out of the school gates. It is fine with me so i want it to be fine with the rest of the world.

Having a discussion with our kids is vital for the understanding and growth of their tiny minds. Seeing and accepting that people are different. Some people natural fall into similar categories such as gender, abilities, looks and so on, but some people don’t. Their differences shine like beacons for the vultures to home in on and take any peace of self esteem they can get their hands on. BUT NOT ON MY WATCH!!!! Autism is just one area of difference, but our children will be witness to other differences with their peers as we are a society of diversity. Were talking, gender, physical disabilities, Sexuality, Races, language barriers and there are too many to list. But all I ask is when your child asks you why they are different… have the conversation, don’t hush them up in embarrassment that they may offend someone, because in my opinion i would rather they talk about it and ask as many questions so that they understand that its NORMAL to be different. Not wrong or weird or taboo, its Normal and the more we talk about it and educate ourselves that we are not all the same the greater chance that we can normalise differences and or children will become a generation of compassion, wisdom and acceptance.