When Thomas was born almost 5 years before I remember very clearly the sit down, we had with his medical team at just one week old telling us what we could expect after his grade 3 HIE event.
The insult had been catastrophic, they were certain he wouldn’t walk, that he would be severely visually and hearing impaired, that he wouldn’t be able to control his limbs. He would be able to speak or eat orally and the final nail in the coffin, he would likely have severe cognitive deficits.
It was a bleak warning of our future, and we started our new life as a family of four very uncertain of the path that lay ahead. We spent Thomas’s first two years in crisis, managing chronic reflux, failure to thrive, uncontrollable dystonia, and his abject misery at all the challenges life had seen fit to throw at him.
After his second birthday, we slowly began to emerge from the shadow of the dark cloud that had been looking over us. He was much more stable, finally growing well, and generally much more comfortable physically. He also started a small specialist nursery.
Quickly we watched him start to blossom, to thrive.
This cheeky personality started to emerge, a lightness to him that we hadn’t fully appreciated before as he laughed and smiled along with us. He was engaging in conversations, looking for external stimulus. Regular ophthalmology assessments eventually concluded that he had good enough functional vision, he was signed off completely by audiology.
He wasn’t walking, but he was rolling and using his feet to push himself around the floor. He started trying to sit. He would weight bear and then started using a walker to move around at nursery. After months and months of struggling to engage Thomas in the basic communication systems his speech and language therapist suggested, we took a gamble and trialled him on a more advanced system of a PODD book.
Suddenly he was flying, communicating all sorts just as it became time to start considering schools. Therapists started to ask me where I thought he might go, I had assumed to the local special school, don’t rule out mainstream they said. Your lad is very bright.
I went home in shock.
Honestly, many a time it had been hard to imagine getting to school age, but I had never considered that he might go to a mainstream school and after having a look at both it was clear that he would be much happier in a mainstream school.
We are very fortunate that we live locally to a mainstream school with a physical resource unit, meaning they are well equipped to support Thomas with his physical disabilities and the additional learning support he will need for managing communication. The day the school accepted his admission I was on cloud 9!
Preparation began in earnest, he needed a more advanced communication system to allow him to participate better in class, nursery began testing his knowledge or numbers, colours, shapes, phonics and transition plans started to be drawn up.
Then a pandemic was declared and the country went into a national lockdown. Due to his physical disabilities Thomas was considered extremely clinically vulnerable and we were shielding.
As the lockdown dragged on and on, I became more and more concerned. Obviously the closure of schools and nursery was having a big impact on all children, but it felt even bigger for Thomas, knowing he was already having to work so much harder to keep up with his peers to start with, this was only going to exacerbate that!
It then became clear that Thomas would not return to his wonderful nursery, that he would be starting school in September with no formal transition. Honestly, a few tears where shed once I realised that he wouldn’t be able to say goodbye to his nursery friends, or attend his nursery graduation, and even more important rite of passage for Thomas and us.
As the summer holidays roll by it’s been hard to believe that he’ll be starting school in just a few weeks.
I had to give myself a stern talking to in order to get his uniform ordered in good time! His new school have been great, trying their best to get to know Thomas and be set up for him. They even managed a brief home visit to meet him and bring him a little pack full of pictures and activities for us to help prepare him.
Of course, given his medical needs there have been lots of other issues that have needed great planning, making sure that staff can tube feed him, or suction him if needed. Looking at how physiotherapy and speech and language therapy will be incorporated into his school day, making sure the school have the right equipment for him. All done virtually or socially distanced in PPE of course!
This really hasn’t been the transition we were hoping for, and there is still a lot of worry about how safe it will be come September, but I am so excited for the next stage to start and I can’t wait to see where Thomas will take us!