Ollie’s story

The day our lives changed

The moment I learnt that my newborn son had Down’s Syndrome is one of those moments that stay with you forever, a bit like remembering exactly where you were, or what you were doing, when you found out that Princess Diana had died – it’s gives you such a jolt. Fat tears rolled silently down my cheeks, all my happiness blown away in that instance, as the two consultants looked at me sternly and made it abundantly clear that this was a “very bad thing”. I could hardly take in the list of worst case scenarios they ran through but it all sounded dire.

Ollie was born in August 2011 and I will be eternally grateful to the wonderful midwives for providing such great comfort to me. Their past experience of similar situations and the practical help and advice they gave me pulled me together, and, as I spent the next 10 days going back and forth to St. Mary’s specialist Winnicott unit, where Ollie was being kept to monitor his oxygen levels, I just grew desperate to get our little bundle home so we could get on with caring for our new baby like any other family and get on with our lives.

What followed was the happiest 6 months of my life, on maternity leave with Ollie who turned out to be the loveliest baby boy imaginable. So easy going he went like clockwork, from sleeping through the night at 3 weeks old to moving onto solids with an excellent appetite from 4 months. It was pure bliss and he had none of the medical problems I’d been led to believe would happen.

How our journey with Kids began

As I began to wonder what all the fuss was about Ollie ‘s first birthday came and went and, based upon what we knew from our experience with his older sister Issy, we realised he wasn’t hitting the usual targets for a child of that age. We knew Ollie needed help but we had no idea how to go about getting that help, or even what sort of help he needed. One day we had a rare visit from a health care worker who mentioned Ollie had fallen off the radar and that, usually, a range of support services would have been in contact by now. She promised to get us in touch with Kids, which was an organisation we hadn’t heard of before. On the 9th November 2012, Theresa from Kids came into our lives and she immediately gave the sense of someone who knew exactly what was needed and how to go about it.

With her help, we suddenly had a whole raft of support we’d been unaware of; physiotherapy, occupational therapy, speech and language therapy, regular medical checks. We hadn’t realised how important these are for children with Down’s Syndrome to ensure things like their thyroid is functioning properly, hearing tests, eyes test – all these things regular, healthy people don’t necessarily worry about.

Seeing another side to Ollie

Theresa ensured it all fell into place and visited regularly for over two years, until he was fully settled with his Learning Support Assistant in nursery, providing a weekly home learning service for Ollie on top of all the support provided in relation to his general well-being and the navigation of services provided. It’s only when we had significant challenges with getting regular access to therapy for Ollie within mainstream nursery and school that we realised how lucky we’d been to have regular weekly visits from Theresa over a sustained period of time.

Ollie had always been a rather serious child, however, through Theresa’s interaction we discovered a whole new side to him. She demonstrated various techniques to us that provided him with the stimulation he needed and it became evident he loved interacting with anything musical and was drawn to bright colours and intricate pictures and patterns. He became fun-loving and sociable, quick to giggle, with a touch of the mischievous about him.

Preparing Ollie for nursery

We weren’t prepared for the raft of paperwork that was involved and, as we discovered through Theresa, there is a right way and a wrong way to fill out a form. With her guidance she helped us to enroll Ollie for disability allowance, something that would never have occurred to us but which has proved a godsend covering the cost of dietary supplements we buy for Ollie.

Getting your children into your desired school is fraught at the best of times. With Ollie, it was all about convenience and proximity. Theresa paved the way for getting Ollie into a local mainstream school by writing a letter to the school to ensure they would accept Issy, enabling Ollie to join as a sibling at a later date. She helped us to navigate what is an extremely complex SEN (Special Educational Needs) system, along with getting a SEN statement in place so that, a few years later, when it became evident Ollie wasn’t cut out for mainstream school (he still doesn’t talk, at all, so the gap with his peers is now more of a obvious) we were able to push to get Ollie accepted at a special needs school. This is something which is even more difficult than getting children into mainstream school as places are so limited.

When I look back at what we learnt from Theresa, I wonder how any family who has a child with special needs could cope without Kids because the local councils simply do not volunteer that level of support and assistance. As a family, we will be forever grateful.