Is it the A word?

There is a lot of talk at the moment about autism , whether it’s because it’s an issue at the forefront with us and we seem to be noticing it more, or whether there is an increase in the media at the moment. I read an article on Wales online about the Welsh government making plans for a national autism service in Wales. There is also a programme ‘The A word’ that has started on bbc1, it’s a drama based on real life about what a family goes through when a child is diagnosed with Autism. When I watched the first episode, there were so many similar characteristics that I noticed in my son, Cody. I messaged my mum straight away to see if she was watching it and what her thoughts were. She could see it even more, and it confirmed that deep down, Cody is very likely going to be diagnosed on the autistic spectrum.

From a young age, probably more since he started in a playgroup at age 2.5,  and even more since starting school nursery and reception, we knew there was something slightly different about Cody. 

He reached his ‘milestones’ just sometimes a little later. He took his first steps at 15 months old, and it’s only since turning 4 years old his speech increased much more. I believe it might have been from the 18 month health visitor check, he was referred to a speech therapist. He was saying a couple of words, but was borderline on the edge. Of course I agreed because I want the very best for my children, and whatever is offered I will take. 

At the age of around 2, Cody had his first referral to a paedtrician and physio. He was a little clumsy, falling a lot, so they just wanted to check how he walked. We were discharged after the first session, and told to get referred if he was still like it at school age. Cody had an hearing test  at the local hospital too, just to rule out a cause of delayed speech, and it was perfect, 10/10.

When joining school nursery, the differences were noticed even more. When looking at other children’s behaviour, how they played and how they were in school , Cody always stood out. The school nursery teacher also noticed it and spoke to us about it. We were in agreement that he needed to be referred back to a paedtrician to see if there was anyway they could help him.  We kept in touch regularly with his nursery teacher and spoke about any concerns.

Another matter in the mix, is that we choose to send my son to a Welsh speaking school. It’s always been on my mind, is this why he is like he is, is it because the Welsh language has completely confused him? We don’t speak fluent Welsh at home either. I know basic words and songs but I am not a confident Welsh speaker. The reason we sent him to a Welsh school, is because I felt it was important to have the skill of being bilingual, that it is our native language and supposedly good for brain development. The Welsh speaking schools, in the area we live, had better ratings. I’m constantly judging, do I need to transfer him to an English school. I’ve wanted to give him the chance to learn in a Welsh school, for as long as possible. If that time comes, that we have to transfer him, because he can’t get on comfortably with it , then we will move him. 

We ideally wanted Cody to stay on  and join in reception at the same school he was at nursery in. You have to reapply for a place to join reception, and unfortunately we didn’t get offered a place. Despite this we appealed and tried putting a strong detailed case together, with the information we had on Cody’s difficulties starting to come through, we felt the relationship we had built with the school, and Cody knowing the children who would be going into the same class was so important. Plus we had family members at the school who could have helped me out if I was too unwell with things like the school run. The appeal was unsuccessful and had to make a decision what school Cody would start reception. On the list 2 Welsh speaking schools had places available that were over 7 miles away. I went to visit the closest. I was actually happily surprised. It was a new Welsh school that had recently opened and had new buildings and classrooms. The class sizes were still very small. It was a little strange that there were 2 seperate schools on the same site. The one half was an English speaking school, and the other half the newer Welsh speaking. That didn’t put me off too much. 

So that’s where Cody started. Like a lot of children, Cody disliked going at first, he would cry, pull away and say he didn’t want to go. While all the others started to settle down after maximum of a couple of weeks, Cody didn’t. It’s gone on a few months and he wasn’t settling. By the first half term the teacher and health visitor were trying to reassure us saying it can take longer in some children. There were other problems too. Although Cody was toilet trained at home. He couldn’t cope in school. He would have multiple daily accidents. He wouldn’t ask to use the toilet and when the teachers would try take him he wouldn’t go. He was becoming more and more distressed. The first few weeks we tried taking Cody in the morning around to the playground, where all the children play and then line up when the bell rings, and walk together into the classroom. He wouldn’t do it. We were the only parents that had to walk Cody to the class door, with the rest of the children and the teacher, but he just didn’t want to. After meeting with his class teacher and being introduced to the SENCO teacher, we started taking  Cody via the front main entrance in the morning and collecting him via the front entrance in the afternoon. He has definitely preferred this and this is what we are still currently doing at the moment. The school asked us to put pull up nappies on him too, even though he uses the toilet at home and when we are out together as a family, he won’t in school. He was sometimes having 3 accidents a day and it was becoming disruptive and a health and safety issue, in their words. Plus most of the time, Cody wouldn’t let them change him so we were called up the school each time. This was difficult for us going up so many times, physically for me, costly, but most of all it was distressing Cody.

We have met up with the paedtrician again, filled in a questionnaire form. The school has also filled one in too. When we went to a follow up appointment with the paedtricians, the consultant and other dr said it sounded exactly like autism, but because Cody had given the dr eye contact and played with his sister during the session, she had changed her mind and wasn’t sure anymore. If that was the true reasoning, I don’t really agree with that. He has always known his sister and lives with her. Of course they are comfortable with each other. 

Cody’s class teacher and senco teacher also filled in some other lengthy forms to send to the council for a meeting to put support in place. Since that form a school psychologist visited Cody and met up with ourselves at his school and a repeated speech therapist assessment.  This month, we have a disaplinary meeting with some of the health professionals involved in Cody’s care, and then maybe a diagnosis or and more support will be given and a plan put in place. 

At the latest consultant appointment, which my mum attended with Cody and I, she does think he is on the autistic spectrum but can’t diagnose yet as the other person doesn’t agree at the moment. 

What I want as Cody’s mum, is the best support possible for his needs. So there isn’t a diagnoses yet, but he needs something more in school for him to feel more comfortable and safe, to feel happy, and join in as much as possible. I think he does need some one to one to help him along with his work, to increase his confidence and build trust with someone who is there for him and that he can talk about any concerns. 

It’s the first time ever really spoke about his assessments and journey at the moment. I will update more as I find out more too. I haven’t really talked about his behaviours of why he may be autistic, in this post, but I will do another time. 

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