Our Journey Through Autism

Butlins 2017 - Riding the waves

Butlins 2017 – Riding the waves

So, I have wanted to put something together for a while now, the story of our journey through autism. I’ve thought about it, even written part of it in posts, but now I feel the blog has grown enough and that I have grown in my writing enough to write this post.

I also wanted to make it more than just a post that would work its way down the list, so I am making it a page so that anyone can read this at any time.

Our Journey

So, this post is about our journey, I reckon you already know that as I have said it above. What does that really mean though? Well, what it’s not is a bit of fiction, though at times it may seem like that…

Our story really goes back to early 2015. Our son, little Mr. as I often refer to him as was born in October 2012. It was a typical pregnancy, so nothing unusual, and a regular birth. He came out just over 7lb so a nice size.

So, nothing out of the ordinary. He did spend a few days in hospital when he was about 4 months old as he had caught Bronchiolitis

Bronchiolitis is a common lower respiratory tract infection that affects babies and young children under two years old. – www.nhs.uk

So, he had this illness and spent a few days in the hospital, but this didn’t seem to effect him and he continued to grow as normal.

At Around A Year

So, we started to notice that he wasn’t progressing at the same speed as his older sister did. He was a little slower to start to crawl (he was almost 1) and he had not tried to walk. Though at around 14-15 months he did start to walk so he was only really 3-4 months older than his sister was.

There were a few other things like he didn’t really play with toys. He didn’t really interact with us too much and he was never really a cuddly baby. However, you read the common symptoms of something like Autism and he says some of these, but a common one is all about eye contact.

Little Mr. has always had very engaging eye contact, he didn’t mind you being around him – he doesn’t push you away, in fact (and I am going to jump forward 2.5 years to today for a short while) today he is very cuddly too.

We really just put it down to his personality, we didn’t want to start worrying or rushing him into doctors. We wanted him to grow up the way he wanted.

At Around 2 Years

So, through his 1’s he continued to progress physically. He did most of the usual things like running around, jumping and all that. He still wasn’t really playing with toys, though he did play with other things. He enjoyed doing things that were quite repetitive, such as spinning objects, objects like plastic bowls.

He also wasn’t really speaking. He did pick up 1 or 2 words at first, but then never really picked up much more. He also didn’t seem to understand what we were asking, such as in want juice, etc. He also didn’t have the ability to do things such as simple puzzles, he didn’t seem to have the understanding. It was starting to be a bit more obvious that at this point he was struggling.

However, on the opposite side to this, his personality was growing, he was enjoying life and was very happy. Nothing too much seemed to phase him and we found he loved music, especially watching the nursery rhymes on YouTube.

We had also mentioned and talked with a community nurse on our worries, it was at this point that little Mr. was put forward for an appointment with the CDC (Child Development Center) to see if there was a reason for what we were seeing.

Going For Diagnosis

So, around 4-6 months later we had an appointment at the CDC. The way they do this is they have 4 children, all of a similar age. You go into a room with the other parents and the children guided into play, circle time, snack and so on. In that room are a number of experts such as OT (Occupational Therapists), EP (Educational Psychologist), Pediatric Doctor, Sensory specialist pus others. Each week they could change.

There were 3 of these sessions, one each Monday for 3 weeks. After these, the doctors and experts took around 2-4 weeks before we had an appointment for a diagnosis.

Now at this point, I always point out that the young boy we went in with was exactly the same young boy we came out with. Nothing changed with him. He still had the same cheeky personality, did exactly the same things and was still loved in exactly the same way. The only thing that changed in that room was that he got a diagnosis of ASD (Autism Spectrum Disorder).

From There Our Journey Began

So, we had just received the diagnosis, little Mr. was on the autism spectrum and as I say, for us it wasn’t a disbelief, denial or any of that. He was still the same little boy. What it did mean though was, that, we could start getting help with both how we can relearn how to approach him and also help him better learn to communicate with us.

Lots of things started to open up. We started applying for all the different therapies he could do. We went to meetings for sensory (he has a high sensory need) to better understand how to approach this. He attending speech therapy sessions. He went to music therapy (something he enjoyed). There will most likely be one or two things I missed or forgot.

We also attending things such as the Early Birds course as well as other training and help that we could attend ourselves.

We were also lucky enough to get assigned a fantastic portage worker. She came out once every 2 weeks for around a year and worked with little Mr. as well as us. She helped us understand how to start communicating with him, but also helped him start communication with us. We learned how to copy or mimic what he was doing at first, the first form of communication. This progressed to him initiating this. We then moved onwards and upwards.

We’re still not there yet by the way, even though he is 5 he is none verbal and he hasn’t quite got the concept of PECS.

So, in the beginning, he was just us at home, but we wanted him to go to a pre-school, we wanted him to get that social interaction – because – he wasn’t pushing anyone away.

He went to pre-school

So, he went to pre-school. We got extra funding in place, with help from them, so that he could have a 1-2-1 while there. We knew it would be good for him, but we also knew he needed constant support and help.

It seemed to start well. He seemed to be enjoying the short 1 or 2 mornings he was attending. That did soon change though. He started to be miserable and cry and seem not to enjoy it too much. We’re not sure 100% why the change, but we pulled him out.

We hadn’t given up though, we still wanted this to work. So, we met with the pre-school, with our portage worker and we tried to figure out a plan to bring him back and so he could thrive.

It started with small steps. Just a few hours. This went well so after a little time this increased, went to 2 mornings. He started to thrive and I always say we noticed him grow much over the time he was in pre-school. This was down to the program they set for him. He thrived until he left, which was this year. Then he started his new SEN school.

And at home

While he was growing at pre-school, he obviously was also growing at home. We kept on learning new things, experimenting with things to find out what he enjoyed.

We hit some hurdles too. For example, we booked to go away, on a flight in 2016. However, we ended up pulling out as we found he was having an issue with smaller spaces, such as buses. We decided that we wouldn’t push this and so pulled out.

What we have done since though, we’ve visited Butlins around 10 times in 3 years. Its great for weekends away, even tried a week there now. Loads for the kids. That said, 2018 we reckon is the date to get him back on a plane again. He went on one when he was 8 and 18 months so the time is right.

We’re always learning with him, and he is forever growing. He enjoys a lot of things his older sister does, like going out for food and going to coffee shops – I reckon it’s for the cakes. He loves the outdoors so we go out walking when we can. We’re lucky to live on the South Coast of England so there is a lot around – forests, beach, sea and so on.

That said, it’s still not just plain sailing. It’s a learning process, and we do get most of it right, but there are steps backward. He’s still none verbal. He does communication in a way, he takes you to or brings you what he wants.

He’s a checking young one too. We are learning every day. We’re learning about Autism. We’re learning about ourselves. This is not the end of the story, just the beginning.

What does the future hold?

Well, he has just started school. He is progressing well, and there are targets to meet. He’s also growing. This page will also grow. I will be updating at the future unfolds, so please check back from time to time. For no, though, I hope you’ve enjoyed it so far…