Just over a decade ago our lives changed forever when my husband Paul and I adopted our beautiful twin boys, Levi and Lucas, now aged nearly 13.
Social workers told us the boys had some developmental delay – we weren’t too sure what to expect.
“When we first saw our boys in their cute matching red and white striped jumpers we instantly fell in love and felt an overwhelming connection.”
The early days
The first few nights were very difficult. At two years old, the boys were still using baby bottles and they screamed and were terrified in the bath. We didn’t know what was wrong.
Over the following weeks it become apparent the boys were experiencing more than just developmental delay; Levi couldn’t stand or walk, eye contact was non-existent and they would sit and rock about.
Levi loved spinning things and Lucas loved lining things up on the tv cabinet and then running back and forth – making sure the objects were exactly the same distance apart. It started with shoes and then toy cars.
Health visitors raised concerns the boys weren’t hitting their milestones. We were increasingly worried, particularly as it was almost time for them to start going to nursery.
“Which nursery would they go to? How would they play? Would they be looked after properly? Would they be understood?”
We had several appointments with a pediatric occupational therapist who assessed the boys’ speech and language. Signs were pointing to autism. We had heard of autism – in fact I used to go a school (now the wonderful Robert Ogden) during a time the National Autistic Society shared part of the building. I often used to see and speak to the pupils through the fence. I particularly remember one pupil who knew everything about cars. It was amazing; you could ask him anything about engines, makes, models – it was so fascinating.
So back to Levi and Lucas. They were struggling with play and needed support in all areas including feeding, dressing and they were unable to speak. So, a multi-agency meeting was organised. At the boys’ nursery, everyone sat around a conference table. The paediatrician concluded after several appointments and observations the boys were in fact severely autistic. He recommended Lucas and Levi would need life-long support and care.
We were so upset our boys had been labelled.
“What would this all mean? Could they ever have friends and be a part of everyday life?”
We didn’t want to hide the boys away and we wanted them to experience things like any other little boys. So we tried taking them to parks and supermarkets but they were all very difficult times; everything we seemed to do ended in screaming, tears and upset.
We found ourselves very aware of other people pointing and passing judgment – assuming the boys were just being naughty. People would say things like “What’s that noise?” and “I wish they would control those boys.”
The National Autistic Society
We spoke to Levi and Lucas’ consultant who recommended we go on the National Autistic Society ‘early bird program’. He gave us some information and we made an enquiry. They were so friendly and helpful – they explained the program and booked us on the next available course. We finally felt someone understood the boys and our difficulties.
We joined the program with a group of other like-minded parents. We’d finally found people who understood us and were going though similar issues. We felt less alone and part of a family.
As weeks went by we were learned about autism and approaches to help us understand autism from our boys’ perspective. We’ll never forget the day we finally felt as though we could experience our boys’ world. We had ongoing support, access to an Early Bird Library and we could link up with other parents to offload and share experiences.
Although some things like trips to the hairdressers and nail-cutting and brushing teeth were difficult, with the help of advice from the program the boys were finally able to enjoy trips to the park – we learned to go early while it was quiet and less overwhelming.
“Eventually the boys loved swings and parks – we learned to go early while it was quiet and less overwhelming for the boys.”
Blue lights and sirens
When Lucas and Levi were three years old, something major happened. Lucas suddenly started fitting at home. Our world fell apart. We were petrified. The ambulance arrived with its blue lights flashing.
This started a new chapter in our lives – medication, more appointments and unknowns. Shortly after Lucas’ seizure, Levi also started fitting and we were faced with two severely autistic boys with speech and learning difficulties, global developmental delay and now epilepsy.
Our lives had been turned upside down. It was exhausting and upsetting – when would this rollercoaster end?
As time went by we understood the boys’ autism much better so we could control the situation and we learned what worked for Lucas and Levi. Even the most simple days required lots of planning – we had to remember rescue medication, snacks and nappies but we were determined not to allow the boys’ difficulties to rule their lives.
It was now time for our boys to start full time school.
“How would this work? Where would they go? Who could manage their autism and epilepsy?”
Naively, Paul and I wanted the boys to attend our local primary school with children from our area and their local friends. But it quickly became apparent this wasn’t going to work. Schools that could meet the boys’ needs were few and far between.
There was a National Autistic Society school in our village but they didn’t accept pupils until age seven. So, we ended up transporting the boys over 45 minutes each way to a special needs school outside our local authority, within a small setting that specialises in ASD.
We were having difficulties with the school and as the boys were approaching their seventh birthday we could apply to the local National Autistic Society school just up the road from us. It’s ideal; should the boys have a seizure it’s close by and they would be educated in their local area and with a specialist team. Changing the boys to the local school wasn’t an easy task but with support from the National Autistic Society helpline, after two years we eventually settled them into their new school.
“The new, local school proved to be the best thing ever for the boys.”
Lucas and Levi love it at school. The staff are so caring and supportive. They are amazing with the boys and great at managing their complex epilepsy.
Our campaign for medical cannabis
We now face our biggest challenge to date – campaigning for medical cannabis to help our boys’ epilepsy
We have a major fight on our hands because new legislation makes it very difficult to obtain medical cannabis in the UK. You can follow our pioneering campaign on social media – we’re keeping it all up to date with the latest news and achievements.
Original posted on https://www.daddyanddad.co.uk/post/the-rollercoaster-that-never-ends