Neurodiversity Celebration Week
18th -24th March 2024
Our Autism Journey
by Ali Warren
Office Manager – Captain Fantastic
Hi, I’m Ali. I started working in the Office with Captain Fantastic in January 2017 when my daughter (Kara) was 9 months old. It was great to work for a company, knowing that you were helping to make children’s special day that bit more magical with one of our amazing PARTIES. As Kara grew older, I was also able to relate to the parents I chatted to when they called up to book a party. Kara of course had a great time attending the various shows and parties that we put on, including the launch of our Wellbeing for Schools workshops and our Halloween Show. She even had Captain Fantastic attend her NURSERY to perform a show.
In January 2020 I gave birth to my son, Zac. I’d had a few complications during pregnancy, but nothing too worrying.
Of course, two months later the pandemic and lockdown hit which meant that like so many others, Zac’s early months were spent locked inside with just Kara, myself and my husband. Zac still hit his milestones with smiling, rolling over, sitting up, standing up and walking, which was great. As the months went by and lockdown started to ease his Nanny and Grandad would come to visit. We started to notice that it was quite difficult to get him to smile. We assumed this was just because he wasn’t used to being around them and didn’t think much of it. More months went by and Zac turned One. I was mindful that Kara had started speaking around this age, however, Zac didn’t appear to even be trying. I had been told she was a particularly early talker and that boys were slower, so I thought I’ll just wait and the pandemic probably hadn’t helped him. He made noises but just didn’t produce any actual words. This went on for some time.
I tried taking him to some social groups including our own Captain Fantastic Toddler Group. The other children were a similar age and were clapping along, giving high fives, shouting out their favourite nursery rhymes. Zac spent alot of the time glued to my lap, sometimes burying his head into me. Not seeming to really understand what was going on. His favourite part of the group was when the bubble machine was put on and he got very upset when it was time to turn it off.
Just before Zac’s 2nd Birthday he still had no words and I was starting to get concerned. I contacted the Health Visitor who arranged an early review of him. She did say that due to the pandemic there were many children with delays because of their lack of social interaction. We went to the review and it was clear he was behind in many areas other than speech. I was given various resources to try and help him along, however I started to realise that getting his attention or eye contact was very difficult, which meant that trying to teach him anything was a real challenge. I was advised to start him in nursery so that he could gain more social interaction. I was not keen on this idea as I had wanted to wait until he could speak and tell me how his day was. I reluctantly agreed and thought maybe it would help him.
In the mean time we saw various health professionals. The Paediatrician suggested we wait 6 months to see how he developed and make sure that his delays were not in fact due to the pandemic. We were put on a waiting list for Speech and Language Therapy, I had a phone call with an Occupational Therapist as Zac tended to put alot of things in his mouth and in particular he would chew on toys rather than play with them. On the rare occassion that he would take notice of a toy he would usually just spin the wheels on the car or press buttons. He seemed to notice tiny details on toys, like a hole or a screw. He would never push a car, he couldn’t get the shapes in the shape sorter or the puzzle piece in the correct place. He spent alot of time watching TV and seemed particularly interested in the credits at the end of a programme. He would flap his hands in excitement and often get upset when the credits ended and wanted to watch them again. He also seemed to be very interested in things with numbers on. We found that one way of getting his attention was to count. He still had very little understanding but he seemed to recognise numbers and letters. When his sister ran up and down the room, he would run with her and sometimes laugh, however, other than this they weren’t able to play together as such.
I spent hours trawling the internet and Social Media for help, advice, answers as to what I could do to help him. I found some groups on Facebook of other parents with Children on the spectrum and also parents on Instagram who were video blogging their stories. It not only gave me a wealth of information it also gave me hope. Some of the children had been the same as Zac and now were older and were thriving. I knew that the best thing I could do for him was to get him all the support he needed and just let him be him and hope.
It took a year for him to get the Speech and Language appointment, by which time I had learnt most of the strategies from my own research. By this time Zac had started to communicate without speech. He would take your hand and lead you somewhere, then throw your hand up to what he wanted, or he would bring you an item to switch on. His eye contact started to improve, particularly with people he was familiar with. Because of my online research I knew what the traits of Autism were and I started to notice alot of them in Zac. He would hold objects very close to his face, or look at the TV from different angles. He would love going on the swing or being held by his hands to hang his head upside down. I realised that alot his behaviours were sensory seeking. As I started to understand what he was doing and why I started stressing less about it. He was just Zac and this is what he needs to do.
Zac is now 3 years old and has just been diagnosed with Autism. We are waiting to see whether his nursery can get him 1 on 1 support so that he has someone constantly interacting and encouraging him at nursery. I’m told that our Borough has very little funding left and so I am now at the start of another battle to make sure that he gets what he needs to thrive, and I will.
Like so many other parents with children on the Spectrum (and every other parent!), I will do everything in my power to make my little boys world the best and happiest that it can be.
I’m writing this today to spread awareness of children with Autism and other learning difficulties and disabilities, to help people with Neurotypical Children to understand a little insight into the world of a child who may act a little different to your own. But more importantly to ACCEPT these children for who they are. They are not better, or worse…. just different… and that is not a bad thing. Zac has taught me that there are other views of this world and you do not need words to show it. Just take the time and attention to see it.
SEN Friendly Parties
Inspired by Zac, we are now looking at launching our own SEN friendly parties. Please register your interest below and we’ll be in touch as soon as they are ready 🙂