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Toby Henderson at home: autism charity providing vital support needs your help

by Rachel Hodgson, Marketing Officer at NCFE, and trustee and joint chair at Toby Henderson Trust
Rachel Hodgson
Marketing Officer at NCFE, and trustee and joint chair at Toby Henderson Trust

In a space saturated with struggle – be it financial, emotional, job losses, seeing too little or, indeed, too much of some family, plus the removal of our usual freedoms and emotional crutches in the heavy presence of a deadly pandemic – I’m loathe to unburden what’s on my mind. But rest assured, it is entirely altruistic and in the most genuine of good faith.

Adapting quickly to a new world

The Toby Henderson Trust like many other charities (and most businesses) has had to adapt quickly to a new world. Prior to lockdown, The Toby Henderson Trust provided crucial support to families with autistic children and also adults across Northumberland and South Tyneside. Despite the coronavirus pandemic, their efforts to support families remain. However, now their support looks quite different.

The remaining staff – four out of seventeen at the time of writing – are providing a lifeline to those families who can no longer cross the doors of Toby House. They support, communicate and, in some cases, simply understand the minds of their brilliant, special, but very complex children.

Since temporarily closing the doors to its two sites in March due to the government-directed lockdown, The Toby Henderson Trust has worked tirelessly to ensure that it can continue to provide vital support to families all across the region who are affected by autism and are trying to adjust to the unsettling changes. Believe me when I say that the word ‘unsettling’ is almost offensively mild when it’s used to describe what these families are currently dealing with.

Social skills and communication session

The Covid-19 situation is scary for the vast majority of us. Please understand that I appreciate the individual struggles that everyone faces; my effort to highlight the struggles of these families does not make your struggles less, nor make theirs more. They are just different.

Although autism is a varied spectrum disorder, many children who have the condition are finding the disruption to their routine, schools, Toby House, therapists, family support etc. nothing less than traumatic. Rigid and precise order alleviates their symptomatic anxiety. Families have often worked for years on a routine that abates their children’s anxiety and gives them respite from the symptomatic distress and meltdowns which occur as a result of disruption.

Families are feeling overwhelmed and isolated

Families who usually access the support at The Toby Henderson Trust have told the staff that they are feeling overwhelmed and isolated. The trust’s team have taken many, many tearful phone calls from fraught family members who have not only their autistic children’s emotional struggles to contend with but also the pressures they have been experiencing themselves: being on furlough, job losses, and redundancy, and having other children to take care of when schools and nurseries are closed.

As I frequently do, I recently spoke to Lesley Henderson, Founder and Project Director of The Toby Henderson Trust, who is, in no uncertain terms, a true inspiration and selfless person. She said, ‘Families have told us that this situation is really putting their children and young people’s challenges “under the microscope”. As time goes on, the challenges experienced by our families continue to rise with considerable momentum. Many are reporting “crisis situations” where children are becoming increasingly aggressive towards other family members, and there has been a significant increase in self-harm.’

The trust’s virtual doors remain open

Reaching out

Prior to the necessary closure of its sites, The Toby Henderson Trust operated a support network and diagnostic service to families and autistic young people from 2 to 20 years old. This included their well-attended playroom sessions which provide revolutionary one-to-one therapy to help young children with autism to help them develop their verbal and social communication skills.

The trust has had to adapt quickly and find ways to support families digitally. The skeleton staff of four who are at the coal face have handled nearly 3,500 incoming emails in the last 14 weeks. Families have been able to gain support via phone consultations and Zoom. The trust has created amazing free resources for families to help them explain lockdown to their children, and on managing mental health, stress and anxiety. The team has also set up weekly online support groups for parents who are struggling to cope without the help of friends, family, and services like The Toby Henderson Trust.

One parent who has accessed the trust’s support said, ‘It means the world that The Toby Henderson Trust has reached out to us. Our daughter’s school has only contacted us once with limited support, yet the trust has reached out three times, and it means so much.’

‘We need to be there for families who are struggling to cope’

The pandemic has put the trust under increased financial pressure. It has lost a significant amount of funding due to the cancellation of events like the Great North Run, and regular supporters having to withdraw their funding due to their own financial challenges. In true selfless fashion, Lesley said of the financial burden, ‘This is a really difficult time, and we are very worried about the implications that the loss of funding will have on us. However, it is hard to think about ourselves as, right now, we need to be there for families who are struggling to cope.’

Play therapy session

What the future looks like for The Toby Henderson Trust is uncertain. The basis of their work for young children is intensive play therapy. These children often have sensory issues which means that they require actual physical touch and support. Social distancing, masks, gloves, and frequent handwashing may not sound like scary concepts to you or me, just vaguely annoying, but to children with autism, they can be terrifying. However, the difficulties these children and families face will not go away. So the trust must adapt, and adapt they will. And believe me, if there were a charity that could run on heart and soul alone, it is this one.

How you can help

Here’s the big ask, which you knew was coming. If I’ve moved you in any way, and if you’re in a position to, please consider supporting The Toby Henderson Trust. There are a number of ways to do so. The charity is accepting donations on its website from businesses and individuals. They’re also asking for volunteers to fundraise where they can. The Great North Run is still going ahead as a virtual event, and there are several other ways to raise money and give your support. If you’re looking for inspiration, at the outrageous end of the scale, I encourage you to follow the fundraising commitment of Graham Erikson. He is undertaking a challenge to run 280 km in 28 days. Or, if you prefer to give support in a more manageable fashion, our ever-present, lovable Toby House dog, George, is available to buy in mascot format.

Lastly, I understand the huge impact that Covid-19 has had on everyone and the charitable commitments that many people already have. So if you’re unable to support the trust financially, please love them for their endurance and their efforts as much as I do. If only for the amount of time it’s taken you to read this article. Please understand, appreciate, and empathise with the families I’ve talked about. Those families had precious little support before this and, if services like The Toby Henderson Trust cannot continue, they may be left to flounder. If you have nothing else, send them love and good thoughts.