When I started this blog, I had so many things to write about. Experiences that had happened, both good and bad. Positive stories involving complete strangers, how parenting can be hard, emotional and tiring. Yet it can be magical, happy, full of smiles and laughter all at the same time. I didn’t really mention how we got to that point.
It was at 2 and a half, that the process of getting Ethan diagnosed began. It was a visit from a new health visitor that started the ball rolling. We stood in the living room, talking about Ethan, answering general questions about everyday life, voicing any concerns I had.
Ethan had been running around the living room, bumping into me and repeating the same ‘game’ as we called it, over and over. The health visitor watched, as Ethan formed a line with his favourite trains, becoming upset when the line was broken. At the time I had a suspicion that autism was a possibility, but as a first time mum, there wasn’t really anything to compare Ethan’s behaviour to, to suggest that he was autistic. Sure I had read about autism, but never had a first hand experience with a child who was autistic.
When the health visitor left, that’s when I began researching autism even more, looking for information and explanations for the delayed milestones and researching some of the behaviours that Ethan had been displaying. For example being unresponsive when his name was called, and he also went through a period of seeking out hard surfaces to hit his head on. Looking back, it was mainly out of frustration and being unable to communicate how he was feeling.
A couple of weeks later, the health visitor came back and carried out a test with Ethan. The aim was to assess if he could understand how certain toys worked. For example, he was given a doll and a hairbrush to see if he knew what to do with it. After various activities were completed, the health visitor said that Ethan was boardline on the scales that they used to determine differences. He was referred for an assessment with a paediatrician.
At the appointment, the paediatrician spent a bit of time with Ethan, and asked my opinion of the situation, whether I had any cause for concern. I mentioned autism and her reply was ‘I wouldn’t put Ethan on the spectrum at all.’ I left with more questions than answers. At least if autism was the outcome, in my eyes it answered questions and meant there was a direction to go in or next steps to be taken. The feeling of not knowing, not having answers, was scary.
Fast forward 3 months, with numerous tests being carried out and visits to a hospital for blood tests etc. We had an appointment with the same paediatrician and she said ‘at this stage I think Ethan is autistic.’
From that day, my time was filled with appointments, assessments and reports to get Ethan officially diagnosed. It might seem like a relatively ‘easy’ process, but despite all of the time, energy and tears put into those appointments and assessments, it almost felt like an uphill battle.. pushing against a system that at the time, didn’t usually diagnose children with autism until they were at least 3 years of age.
All of those battles, combined with still having to navigate life with little help and support was very hard. I knew one thing, we would get through this stage, it wouldn’t be easy, but we could do it.. we had to. Regardless of having a diagnosis or not, life was going to be hard, I had to do everything possible to help Ethan.
I didn’t know a lot about autism, how to handle certain behaviours, how to communicate in the best way, but we got into our own groove. I learnt about Ethan, I learnt a lot from him and we found our special way of communicating. Most of the time very little speech was used, Ethan would guide me and I would find ways to figure out what he needed or was trying to show me. As much as I was learning first hand from Ethan, I became his voice but I still wanted to know more. As soon as bedtime came around, that’s when I would pick up a book or research online, I would look for parents who were in the same sort of situation as I was.
Even to this day, years later, I’m still learning. I don’t think you ever stop learning, but the challenges change.
The internet has been a great help, a lot of charities offer help and support to families whose children have additional needs. In the UK for example, the national autistic society has a huge range of information that can be looked at, for free and they also have a phone line that people can use if they wish. Social media is a great tool too, there are other parents out there who use the likes of Facebook and Instagram to share their stories and offer a safe space for parents to ask for help, or to generally chat about the challenges that they are facing every day.
Just knowing that there are other people going through what you are, is very reassuring and it opens up a whole new side of living differently. By looking in the right places, you find your people and you feel so much better for it. Like a weight is shared!