Newcastle Toy & Leisure Library

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Pat's Story

Just before Christmas 1972, I was told by a doctor, who’d just examined the diameter of my first-born child’s head, that “of course you realise that his brain’s not developing properly, and he’s got cerebral palsy”.  I knew he wasn’t doing the same things as other babies of his age, but to be told in such an unthinking way was stunning – and I had no idea that cerebral palsy was the clinical term for brain damage!  As there was little or no provision for children with a disability in those days, we were told he “probably will never walk or maybe talk, so perhaps the best thing would be to put him in a mental hospital”! So began our long battle for a better life for our son, who’d already undergone colostomy surgery at one day old, and then had spent six weeks in Special Care, where we were his only permitted visitors – even his grandparents weren’t allowed in to see their first grandson!

We learned how to care for him as we went along, telling the Health Visitors and our doctors how he was doing, as they hadn’t had a “disabled” child on their lists before, so we had no previous examples to work upon.  Despite many sleepless nights, usually caused by chest and other infections, Matthew continued to experience some aspects of life alongside his peers at local playgroups, but then we realised that there was also no legal obligation to an education at that time for anyone unable to attend the local primary school at 5 years of age.  Matthew went for one day a week to a local nursery, but as he was still unable to sit unaided, wore nappies and was unable to feed himself, he was kept in the room with babies, rather than older children “in case he gets hurt”. Happily though, in 1975 a physiotherapist at the Child Development Centre at the RVI (where we took Matthew every 3 months or so for checkups) mentioned that there was a “toy library” in Pendower where we could meet other families with “special needs” children and try out new toys to see if they would be of any use to them, rather than wasting good money on something they couldn’t play with for one reason or another. This was my first time at Newcastle Toy Library, and as well as taking Matthew along on the first Saturday each month, I also went along on Tuesdays (while he was at nursery) to volunteer to help clean the toys, make tea and any other things needed for the other users.

In September 1976, after some wrangling, Matthew was able to attend Sheriff Leas Special School on Springfield Road in Blakelaw, (now a Children’s Services Centre) where non-ambulant children of all ages up to 18 years old were kept together in one big room called the Special Needs Unit, separate from the rest of the school, and where they were wrapped up in blankets and had music played to them! Thankfully, when parents pushed for more student integration with their peers in schools, things gradually began to improve,

When Matthew was 5 he was eventually eligible for a small mobility allowance (prior to that, the only benefits available were the Family Allowance, and as I had to leave my role in Barclays Bank when he was born, we had to rely solely on his dad’s income to pay for all expenses). School life also improved, with the introduction of teachers who specialised in work with disabled children, and the expansion of physiotherapy and occupational therapy to also include young children. There was a very limited range of facilities available to children with limited mobility, and until 1977 we didn’t have a car, so travelled everywhere by bus – hard enough with a child and a folding pushchair, but much more difficult with extra nappies, medication and suction equipment; LoLiner buses and wheelchair-friendly taxis were still a long time in the future.

Over the years, we helped to establish via Sheriff Leas an “Aunties and Uncles” scheme – a precursor to the Respite Services now available. (Until that time, the only respite available was a stay in one of the mental hospitals at Prudhoe or Morpeth, certainly not the break we wanted our child to have!). Matthew also underwent hip surgery to align his joints, and had to wear a hinged polystyrene “brace” to enable him to sit up in his Maclaren Major (there were very few wheelchairs or special seating available at that time for children, and the Second Skins hadn’t yet been invented). We made up a kind of insert using some pvc-coated fabric to stop him from sliding around the seat,  and Matthew’s dad Dave used pipe tubing to protect him from hurting his head on the sides of the buggy. We were also the first to have a “Shallowbath” – a fibreglass frame which fitted over our bath, and made it easier to lift him in and out – as I’d seen it on a “Tomorrow’s World” TV programme and wrote to Bart’s Hospital for information which was passed on to our Occupational Therapy department. Of course, as we all swapped information, hints and tips to each other, I told all my friends at school and especially Toy Library to apply for one, with lots of happy feedback.

In 1978, after an ectopic pregnancy the previous year, we were delighted with the arrival of Matthew’s sister Suzanne, (though Matthew didn’t like her crying, he loved to cuddle her).   By this time I’d also learned to drive (courtesy of the Rowntree Trust Family Fund), so was able to get out and about much easier, though we probably broke every Health and Safety rule by giving Suzanne a lift on the front strap of Matthew’s buggy when her little legs got tired. As she got older Suzanne helped to change our lives too, as we realised that we must try out more mainstream activities than before (like NTLL does now!!) rather than limiting ourselves to the things that we knew Matthew could be involved in – this resulted in a few bent pram wheels though, as Matthew loved bumpy rides over cobblestones and into the shallow rocky river at Stonehaugh!  Suzanne loved to come with us on our Toy Library visits, and her friends used to be envious of some of the lovely toys we borrowed.  Dave was an engineer, and used his skills to adapt equipment like tricycles so that Matthew could sit on one – with his feet strapped to wooden blocks on the pedals – and experience the act of pedalling. Dave also worked with the Medical Physics department of Newcastle University, in an effort to adapt toys for children with gross motor difficulties.

NTLL gradually realised that it wasn’t age-appropriate for older children to play with toys meant for young children (even if their mental age was small) so they set about working on things that could be used by older children, and became the Toy & Leisure Libraries. Matthew used to borrow videos and cassettes from the Toy Library (he loved music) and a basic switch was developed to encourage him to lift his head – a mercury bubble would then drop down in a glass phial held on his head with an elastic headband,  and activate the cassette player via a long tube (taken from a suction machine) – a HUGE effort for sadly very little reward, so he’d have been thrilled with today’s huge availability of switch-adapted toys and equipment!

While Matthew was at Sheriff Leas, the Education Department began to issue Statements of Special Need for pupils like him – I remember their shock when Dave and I asked for the details of the meeting, as “it’s for the professionals, not parents”; we said we were the 24/7 professionals in Matthew’s life, and if there were no children with special needs, then those other professionals wouldn’t be needed! Needless to say, we went to all of Matthew’s future care plan meeting, with our own reports for inclusion in the summary!

Over the years, Suzanne and her friends used to come with us to Toy Library, to borrow toys and eventually to work as volunteers with me, something which helped to mould their futures, as many of them are now nurses, teachers or social workers. We later moved with Toy Library from Pendower Primary school to Todd’s Nook, where we first met our Toy Library Santa. During that time, I was also a Toy Library committee member, but when Matthew sadly died in April 1993  I felt I could no longer continue; who wanted to have the mother of a child who’d died on the committee? Gradually though, the passion I had for this charity and friendships I’d made both on the committee and with the parents of other Toy Library members encouraged me to come back and put the skills I’d gained to use for the future. NTLL moved on to Scotswood Library before moving 12 years ago to the new Hadrian School with Liz Turnbull, and I came with it, being elected as committee chair when Liz resigned in 2002. I also began working with the Under 5s group as a volunteer again (I still worked at the Saturday Clubs) and gained further insight into the world of young parents today – a good background for my imminent role as a granny!  In short, parents’ expectations are higher than ours ever were, there are more options available for education, mobility, benefits, respite and accessibility, and with NTLL’s support they are challenging acceptable mainstream venues to gain easy entry for all our families.

Once again though, if we parents don’t continue to challenge what’s on offer – either through the medical profession, education, social services and leisure services, then the local and central government will think that “everything’s ok”; if WE as parents in the 70’s and 80’s had accepted “OK”, and not challenged and pushed the professionals, then we wouldn’t have had at least 3 Education Re-organisations, hospitals wouldn’t be more expert for switch-adapted toys and special equipment plus wheelchairs and bikes and respite services would still be in mental hospitals -  plus of course, there wouldn’t be a specialised Toy Library for them to attend!