This can get a bit heavy – if you are just here for the lighthearted stuff please feel free to skip right now 🙂

They call it the Autism Spectrum, it’s so true! The problem is, it leads to preconceived misconceptions, misinterpretation and judgements.

Our boy presented as what is called neurotypical when he was first born. His progress was slightly ahead of the curve ( never liked the way we have a curve) He was growing and developing well, starting his first mutterings from around six months – then it all stopped. Like a switch had been turned off.

His behaviour pattern started to change – his outbursts became different and Michelle knew. She studied Midwifery for a couple of years and had been around a lot of children, she decided not to pursue her own career to be the best Mum to Roman and then Maximus. In the early days she worked part time at the Doctors surgery, that all had to stop though. She came off for her maternity leave and never ended up going back. Instead she became registered carer for Maximus. That doesn’t mean I don’t do my share and carry the load 🙂

Getting diagnosis early was crucial for us, it meant that by the time he was old enough for school he was straight into a base ( a specialist section within a school that has specialised ASD provision ). He excelled in his cognitive ability, always working 3-5 years ahead. This was great in one way, very challenging in others. He could escape from anywhere, from early on all doors and windows had to be locked! He love spinning things and water so the washing machines and tumble dryer had to have fuses taken out when not in use.

His emotional and social development though was none existent, even now at ten he is probably around 5 in his emotional understand.

Verbal communication stopped after those first mutterings between 6-12 months and didn’t reappear till around 5. We had some hope, but then he regressed agian. Thankfully at around 7/12 he began to talk and structure sentences and over the last 6 months ( March 2021 – Sept 2021) he has flown. He never shuts up now 🙂 which is lovely but also exhausting at the same time. This is especially true at 02:00 when he is bouncing around like the energiser bunny for the 15th straight day in a row and he wants all of our attention. His switch flicks and he is awake from 02:00 till he has his melatonin at goes to sleep at 21:30 the following evening.

We were very lucky as we had him toilet trained at 4. That doesn’t mean the “poocidents” were over. Sensory desires and needs are very high with ASD, we had a couple of years were feral smearing was a near daily occurrence, especially of a night. Some nights we would have to shower him and shampoo the carpet in his room 2 or 3 times.

When the smearing stopped the violence began, over 3 years of physical abuse from your child takes it toll. We have been punched and kick for hours at a time sometimes. We got to a point when we thought there would never be an end to it. We were asking for help continually and explaining he was getting into super anxious states and the violence would just become worse. Finally at the end of 2020 we got referred to CAHMS ( children and adolescent mental health services) we were put under a consultant child psychiatrist who listened to us and understood us and prescribed medication for his anxiety.

What a change – within a month the violence had gone from a 4 hour long daily occurrence to a controllable level. He was listening again ands own learning and development came on so fast. Cahms isn’t a magic wand or a fix all – it has been a long, sleep deprived year again and we have worked so hard through everything they put forward to us. We still have outbursts and incidents of violence – especially around moments of big change. Like just now going back to school after being off for the summer. There will always be some element as emotions fluctuate. We just have to keep working to develop coping strategies with him. We can do that again now as the anxiety isn’t driving or controlling him. It is such a shame we were made to feel so terrible for even suggesting he needed medication – we know our child best.

This is just a very brief overview and we may talk more on certain subjects – we just don’t know. It is very RAW. All of this came at a cost – it was a huge cost to our own mental health. There have been times of real lows, where we found ourselves in very dark places. Our relationship has been tested, bent, cracked and splintered. We are still here though, still supporting each other and looking after each other as we travel this life long path that has been laid out before us.

At the end of it all when it come’s to the ‘A’ word and our boy, we just want what is best for him. We will always fight for him, advocate for him even shout and scream for him if we have to.

If you have made it to the end of this thanks for reading, we will leave comments open and if you have questions or need information please comment below or message us directly using the contact us.

Remember #alwaysbekind you never know what people are going through.

UPDATE 13th JULY 2022

Maximus has just had his 11th birthday and is only a few days now from leaving Primary School. He is so lovely when he is lovely. He is developing a real caring side, he will help with little things he recognises and wants to get involved in – jobs like weeding and hovering. This does lead to obsessive behaviour but is so cute.

The past few months have seen and increase in violent outburst as the biggest change of his life approaches. His move to high school is in place and he has been having transition visits, this hasn’t stopped the building anxiety for him. This has led to him coming home from school and letting it all go when he get’s in. Still unable to process his emotions at a level of more than 3 or 4 this has again led to him attacking his mum and I. His sleep pattern has been erratic, meaning 1 – 2 am starts are more frequent.

We have spoken to our specialists and discussed several options – we have decide to try and see it through till September. Once at his new school we hope things will begin to settle down with his levels.

We are fast heading towards puberty and the changes that will bring as his hormones take control.