The Quirky Child

Its hard knowing where to start on writing this. 

How to start writing about the beginning.

Right! Here we go!

If you followed me on instagram for a little while, you will have seen me discuss about our journey on getting AJ diagnosed with ASD or Autism Spectrum Disorder. It had been a two year long journey from the moment the referral went in to getting the diagnosis.

2013/2014

AJ was born in October of 2013. We had an complicated pregnancy as I got pre-eclampia towards the end. We also had a difficult birth as he had to be revived and spent a couple of hours in the SCBU (special care baby unit). The first year of his life was spent up and down as he kept getting chest infections, being a colicky baby and later found out he had a dairy intolerance. Besides those things, he was a very relaxed baby, hitting all of his milestones. He slept through the night from 10 weeks, was walking by ten months. I didn’t have any concerns, but I was a first time mum so I thought he was developing fine.

2015

Not long after AJ turned one, we started to notice something, but at the time, being a first time mum, wasn’t sure what it was. AJ has always had a fascination with lining his toys up. He would line them up one after another, but also had to be in colour order as well. I spoke to the Health Visitor about it, but was brushed off as normal toddler behaviour. We also noticed that AJ would slightly rock when he was sat down. He was very active which i put down to him exploring and being a toddler basically.

2016

After AJ turned two, my partner started to notice more things. I started to notice his tantrums weren’t like other toddlers tantrums. He would place himself on the floor, face down and just lie there. This started to happen a lot more. He was also delayed in talking too. He did the usual mama, dada sounds, but that was all he had out of him. Before his brother was born in the July of 2016, we noticed how quiet he was and started to question if it was normal. Once again it was brushed off as normal toddler behaviour as we were told that some toddlers are actually quiet. By this point, he also very much liked routine. I put in down to the fact that we had a well behaved child (I know that sounds a bit snobbish). Not long after his brother arrived, this is when we noticed a real change in him and i started to have self doubts within myself. I always felt that AJ wasn’t autistic as he was very sociable. We started to notice that he was holding his hands to his ears wherever we went that was loud and noisy. Why was he doing this? I had his ears checked incase they were causing him pain as he was still non-verbal at this point. We also started to notice he was fidgeting a-lot more and has difficulties in sitting still. He also started to get angry with everything. Literally everything was making him angry.

2017

Just before Bear turned AJ, he was referred to speech and language as he was still non-verbal. You could a lot of babbling like baby speech out or not, but that was all you could get. By this point, I just to realise that there was definitely something there, but couldn’t what it could be. It was around this time, we started to notice that he had an obsession with putting things in his mouth to chew and was near enough hungry all the time. He used to (and still does) chew holes in his clothing, chew on toys. The wait for speech and language was too long and when we finally had the first appointment, we knew it was for the long run. He was also late in potty training. He didn’t potty train until just after his fourth birthday, but it wasn’t easy. He managed to be dry day and night in two days. Yes, you read that right. He cracked going for a wee in two days, but the other side was another story.

2018/2019

AJ started school and at first, all seems fine. We then started being spoked to by the teacher assistant/teacher about his behaviour. I felt ashamed as he was being disruptive in class, still having accidents. We was then pulled into a meeting at the school as they had concerns. “AJ’s mum and dad, we believe AJ has autism”. Hallelujah! I nearly bursted into tears. I generally thought up until this point that all of his behaviours were “naughty” behaviours and I was doing something wrong. Turns out the school that noticed it within the first couples of week and wanted to talk to about regarding it and if he was ever referred to the paediatricians for it. The school advised us to go to the GP for him to be referred in, but it was going to a long wait for an appointment as in the area we live in, its an 18 month to 2 years waiting list.

2020

A few months after he turned 6, we had an appointment at home with the specialist nurse who was one of the most loveliest people we could have ever met on this journey. She came out as part of the diagnostic pathway, she needed to assessment at home, in his own environment. All of the things that were his quirky ways we had hoped he would show in front of her as some of the time, he didn’t. Thankfully, he did and at the end of it, she told us that she believed he had autism and needed to be seen by the consultant soon as possible to get his diagnosis quicker so he can receive help that he needed sooner.

A month later and lockdown had come for the whole country. We were given the option to have AJ continue in school, but we had to keep him at home as we had two members of the household in shielding. He struggled enormously trying to learn and do school work at home. The school very Kindly came round with some printed school work for him to completely. The school also put us in touch with a charity who offered a key worker service which helped him.

In September we was offered an virtual video appointment with the consultant which included background medical history, what we saw in AJ and the things that he did. It was an hour and an half long, but to us it was worth it if it meant he got an diagnosis which led him to the help he needed.

2021

In the second week of February I received a phone call asking to bring AJ in for an assessment on the Friday which was in 2 days time. I accepted straight away and took him along. It was just us and the consultant and to me, all the consultant did was talk to AJ and asked him to do a couple of things. This lasted about an hour and at the end, the consultant told me that from the assessment and reports from various professionals, he was able to diagnosis AJ with autism. A massive relief came over us as we finally got his diagnosis and start to work towards getting the help that he needs.

If you feel that your child is displaying traits of ASD, speak to your child’s health visitor, nursery worker, teacher and ask to look at referring them for assessment. I am no way a medical professional, I am just an honest parent sharing her experiences of having a child with asd and the process we went through.

If you already have a diagnosis and need a friendly face to talk to, please use the contact page and I am always here to support you.