KIDS at 50

Welcome to KIDS’ 50th Anniversary

For 50 years, KIDS has worked alongside disabled children, young people and their families.

We’ve directly helped many thousands of children and young people, supported their families and worked creatively to provide support in the way that’s right for each individual We’re delighted to share examples of our achievements over five decades; stories from families we’ve supported, young people who have used our services, trustees who have guided our work and staff who have dedicated their working lives to championing the needs of disabled children.

We have a gallery showcasing some of the events we’ve organised and from some of our services over the years, messages of support, and a timeline (coming soon) illustrating a snapshot of some of our achievements in each of the decades.

As the anniversary year progresses we will be adding more content so please do check back regularly. And if you spot a gap or have a story to share we’d love to hear from you!

Louise’s son, Sam, was supported by KIDS Hull Portage and Independent Education Advice Service from 1997 until 2000 when he unfortunately passed away. She writes about how KIDS supported Sam, his legacy and how she is now part of the KIDS team, helping families with disabled children.

A complicated delivery

Our story goes back a long time to 1997. Our son Sam was born on 11th March 1997, the delivery was complicated but Sam appeared to recover well and we expected to be discharged after an overnight stay. However, he didn’t feed well and appeared jittery. He was moved into the special care baby unit “just for a quick look at him, don’t worry lots of babies come here” we were told. The next day he was very poorly and had started to have prolonged seizures. After what seemed to us a long stay in Hull and Leeds hospitals we came home middle of May 1997 on a very high dose of anticonvulsants, no firm diagnosis other than Severe Global Development Delay; we didn’t know what this meant at the time and thought he would eventually catch up in his development.

KIDS provide a ray of sunshine

Sam was an extremely floppy baby most of the time, he cried a lot and when he did he arched and stiffened, we didn’t have a clue how to manage at the time but we had him home. When Sam was about five months old I heard about a group run by KIDS, we went along to the Baby Group (Sam cried and slept through most of it) and were told by Ena there about Portage, we agreed to a referral. About a month or so later Shirley Pethick, KIDS Director at the time, came to do a home visit. She was the first person I had met who was completely and totally enthusiastic about meeting us and Sam. She swept in like a breath of fresh air, gave us loads of ideas for stimulating Sam’s vision and development and said we would be assigned a Portage Home Visitor within a few weeks. Portage was fantastic for us as a family, it allowed us to see the potential and work through their small steps approach to achievable goals. We had lots of professionals in our lives at this point – Occupational Therapist, Physiotherapist, Speech Therapist, Dieticians, Disability Social Workers, Paediatricians, Educational Psychologists, Epilepsy Nurses amongst some – but the KIDS Portage team were our ray of sunshine on what were often very dark days.

Facing some challenge times

We gradually adjusted and filled our home with lights, sounds, smells and sparkles, lots of sparkles!!! Sam eventually got a diagnosis of Athetoid Cerebral Palsy and Epilepsy but like lots of families we just got on with things. Specialist seating, standing frames and medication became our normal as did taking him out on his adapted trike, swinging him high on his swing in the garden (the higher the better for Sam!) and bouncing him up on down to the William Tell overture.

Sam continued to have significant seizure activity requiring ‘blue lighting’ to hospital, these were frightening times for us. On one occasion Trevor, Sam’s dad, was in a remote part of Denmark about to set sail in the Tall Ship’s Race, I managed to reach him half an hour before he would have been out of reach for a week and he made his way home through the kindness of strangers giving him lifts to bus and train stations and eventually many flights home to England. In 1999 we added our lovely daughter, Kate to the family, a little sister for Sam and a playmate for him as they would grow up.


Getting Sam into school

KIDS helped us through their Independent Education Advice Service (what would now be SENDIASS) to get a very good Statement of Special Needs and Sam was offered a place at our local special school; before this Sue our Portage Worker had accompanied us to all the special schools in the area so we could get a feel of what was on offer.

Sam started school in January 2000, the Millennium year, a new start for everyone particularly us with Sam settling into his new routine at Tweendykes School. He had a fantastic time there, the staff were amazing with him and we felt he was happy and loved there.

Suffering a tragic loss

On 17th June 2000 Sam was unwell with a high temperature, he had a prolonged seizure at home and we called an ambulance, something that we had done many times before. I went with him to the hospital and Trevor stayed at home with Kate who was 17 months old at the time. After an hour or so Trevor turned up saying he just felt he needed to come and a trusted neighbour was looking after Kate. Sam had a team of medical staff around him and we were asked to leave the room as he would need sedating to dampen down the seizure activity. We lost Sam that night, he passed away at 7.15pm.

20 years later it’s still too painful to put into words the impact this had on us all so I’ll talk about the impact of having our beautiful son in our lives and the legacy he left.

Coming full circle

A year after Sam’s death on 24th June 2001 I began working at KIDS and am still working here to this day, now as a Sleep & Early Years Coordinator and I also manage the Befriending Service and our Participation team. It’s not been an easy journey, I’ve cried on my own and with families, I’ve seen little ones I’ve worked with, and little ones who’ve become big ones, pass away and comforted their families as best I can. I’ve seen little ones I’ve worked with become strapping teenagers, leave school and go to college moving on with the next chapter of their lives.

I always say to ‘my’ families “once a KIDS family, always a KIDS family”, we are always there to support them and I make sure they know that. I’ll often bump into families (usually in the supermarket!) and it’s amazing to see what their children are up to. My parents have been staunch spokespersons and fundraisers for KIDS and when my dad passed away this year, he requested that any donations made at his funeral should go to KIDS.

Having Sam in our lives was a gift to us all and we will always remember the way we were embraced by the warmth of the KIDS family.