Guest Post - Autism Awareness Week, Our Journey so Far

What do you see when you look at me?

I’m sure, or at least I hope, you see a normal 8 year old boy? A happy, loving little boy who enjoys Pokémon and gaming!

And what do I see? My son. My first born, the boy who I would give my life for. He has the most beautiful soul, the most positive energy and the brightest ideas.

Jayden has autism. It isn’t something you can see, to look at Jayden you wouldn't know he has autism. As a family we live with the challenges. It's hard work but we get by and we are learning new things every day.

I knew something was different with Jayden from the age of around 9 months, as a mother I guess you just know but I didn't know exactly what. Jayden was a very clingy baby and wouldn't leave my side, he’s never really enjoyed toys and affection has always been on his terms. As a young child he met all of his milestones, in fact he was very fast to do things and was determined to get up and move. He was walking by 10 months and once he started he didn’t stop. He learnt to speak very quickly and by 15 months could string together little sentences. He loved cartoons and when he got his new sister he was kind and gentle but didn’t pay much attention to her. 

We struggled through until one night I remember when Jayden was 6 years old coming up to 7 and we had the whole tantrum before bed saga again and I decided enough was enough and booked him a doctors appointment. I felt stuck in this desperate state. He was struggling and hating school, acting out because he didn’t want to go and underachieving. But  he still had moments where he was my sweet, loving boy. It seemed that as long as Jayden did what he wanted he was fine but trying to identify what he wanted was challenging. I just wanted to help him and find an answer to his behaviours. I had so many questions running through my mind, is it my fault? Am I a bad mum? Have I spoilt him too much? Was it too soon to give him a sister? Did I want to put a label on my son? The answers are no. I’m not a bad mum, his sister was not born too soon, no I didn’t want to label Jayden but I needed to understand him and he needed any help that was available to him.

When his GP appointment came I told them everything and thankfully the Dr was really nice. She observed him while in the appointment and agreed he definitely had some concentration difficulties and referred us to a paediatrician. Unfortunately these things don't happen quickly and it was a good couple of months before we saw her.

That first appointment was so nerve wracking for me. Again I was thinking to myself what if they blame me and there’s nothing wrong, maybe I’m making this up in my head, maybe all boys are like this? His Dr was so kind and understanding I instantly felt at ease and able to tell her all the things Jayden had trouble with. She had a report from the school and she observed him while we were talking and finally agreed that he needed further testing. It was like a weight was lifted off my shoulders someone believed me and we could start heading in the right direction to get the help he needed. 

Jayden didn’t get his official diagnoses until last year, it took around 2 years, but I remember that day like it was yesterday. We arrived in the morning for his ADOS ( autism diagnoses observation schedule) his Dr took him into a room alone for what seemed like hours. They played games and spoke and when they were finished she called us in and said that she had run the tests and can confirm that 'Jayden has autism'. I don’t know how I felt really. I think relief that he was finally going to get some help and I could understand my son but sadness that he now has this label for the rest of his life. I remember looking at him and seeing a completely different son to the one I walked in with. He was still my boy, my son but I finally understood him and that his behaviours weren’t because I was a bad mum it was because he was struggling. He didn’t hate my food because it was horrible but he couldn’t stand the textures (he also has sensory processing disorder which is closely linked with autism). But I felt so sad for him, I know this world isn’t easy for people who are different and that he will face many challenges in his life. My boy isn’t weird or disgusting he isn’t someone to laugh at or to pick on or manipulate, he’s my son and autism makes him him. He’s a wonderful kind soul with so much love to give and after all, the world would be a very boring place if we were all the same. Unfortunately his diagnosis is not the end and he is still undergoing appointments as he is suspected to also have ADHD. 

He is now getting more help at school but still struggles greatly academically and making friends is something he finds difficult. Other children tend to take advantage of him as he just wants to please and at one point were taking his dinner money from him so it's no wonder he hates school.

Jayden is very routine based he likes to do everything his way, when he wants to and changes to the routine cause meltdowns. He gets frustrated very easily and will sometimes release this frustration aggressively. He is obsessed with Pokemon and wears Pokémon socks, pants and t-shirts. He won't wear clothing that isn't Pokémon branded so getting him into his uniform each morning is a battle. Jayden won't eat certain foods because of the texture and will only eat food cooked by me. He also suffers from anxiety which mostly revolves around school and friendships. He has a huge issue with sleeping and finds it very difficult to settle, he hates duvet covers and regularly takes off all his bed sheets. 

Jayden is sensory seeker which means he looks for more sensory stimulation than other children. He will feel, chew and make noises, he has a very monotone voice and is often expressionless. You see autism has many faces no two autistic children are the same, they may have similar characteristics but every diagnosis is the same. 
After Jayden's diagnosis we watched the 'Amazing things happen' video on Youtube with his younger sisters to help them understand more about autism. I thoroughly recommend this video to help raise awareness in your children.

Thank you for reading our story and I hope this is able to help someone out there. Living with Autism in the family requires a lot of patience but also a lot of love. The key to making this world a better place for people with autism is educating; people don’t look autistic and people with autism don’t just need harder discipline. If any one has any questions or needs any advice I’m always happy to chat 😊

Jenny - instagram: @life_with_aurora_and_family

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