Group welcomes new members at first shared experience meeting

One such parent - who explicitly understands what others are going through - is Jen Hopkins, aged 45, from Alcester who has three children two of whom – both boys – are living with SEND. She has established the support group with Vanessa Lowe, Wendy Sherwood and Maxine Woodfield and they are excited about the shared vision of helping, sharing and supporting within the combined communities because many parents feel alone and frustrated with many aspects of the existing system.

”As a parent of a child/children with SEND you are blessed to have wonderfully unique individuals who shine in their own way in your life but it can also be incredibly isolating and you find yourself fighting a never ending battle to get your child “seen” and their needs met. Have I been left mentally and physically exhausted? Without a doubt. In 2020 I couldn’t cope at all. It’s affected friendships and relationships because people who haven’t walked in your shoes cannot comprehend what we go through and the constant state of being on heightened alert we experience. I have been diagnosed with fibromyalgia/chronic fatigue on top of my other disabilities and I have to keep going because if I stop... I fall asleep. I am running on empty but I run on love,” Jen told the Herald.

Her eldest son is Oscar, aged 17 who had open heart surgery when he was six days- old. He is diagnosed with autism, ADHD and dyslexia but Jen and her husband, Chris, think he also has dysgraphia, dyscalculia and dyspraxia but have not had these formally diagnosed due to costs even though a diagnosis would help him to understand why he finds some things harder.

“Oscar was bullied a lot and that left him feeling very low at times but he has found “his people” at college and is doing very well now socially. In fact, he recently scored the dream job of assistant Lego Master Model Builder at Legoland Discovery Centre in Birmingham. He may not have got the GCSE grades and he could have done with more support and he may not have had the social interactions due to always learning but he’s got a lovable personality and a golden heart and he’s following his dreams. We hope he will get an educational health care plan

to help him continue with his education alongside his Lego career. If he doesn’t it will result in him dropping out of further and higher education which would be a crying shame,” Jen said.

She describes her daughter, Faith, aged 14, as the couple’s wonderful daughter who is sandwiched between two brothers with additional needs which does lead to her feeling left out a lot.

“I try to balance this but it isn’t easy and I’m very conscious of the affect it could have on her mental health. She is defined as a young carer because of having two brothers with additional needs and a mum with disabilities. Oscar is a young carer too because of my health,” said Jen.

Her youngest is Jack, aged six, who is a “cheeky and funny little boy” but struggles when things don’t happen as he expects them to and then he gets violent.

“We love him more than cheese and rainbows – a family saying we have - and no amount of him being disregulated will ever change that. When he is disregulated he hits, spits and pulls hair. It is devastating to us all as we know he doesn’t mean to hurt us - he has just flipped from the thinking, rational part of his brain to the animalistic fight or flight part of his brain. He is our cheeky cheeky chappy who we would walk to the ends of the earth for,” Jen said.

It’s never been a straightforward path for Jen and Chris and there have been deep and serious moments of emotional crisis along the way and she feels the current support system is failing parents in key areas which is why the need for a local support is so important.

She said: “The whole system needs shaking up radically. The waiting times are horrific. Not just for the fact that you feel that you are caught in and endless waiting list with no hope but also in the sense that you are losing precious intervention time to support a child with coping strategies whilst they are still young.

I appreciate not everyone can be seen instantly but there needs to be a better triage system.

I have only ever found out about groups and courses through other parents and not via official channels inviting me to use services. Of the things that we have been able to access - not a single thing has been in Alcester, Bidford or Studley. We had speech therapy in Stratford and that was the closest. Most courses I have been on have been in Leamington, Kenilworth or Coventry.”

As so often can happen there comes a break point and for Jen it eventually proved to be a moment of change which then became break through.

She said: “In December 2020 I was overwhelmed with it all and other things and I had a lot of therapy. Nothing takes away the stress of seeing your child struggling and it was only when Jack started school that we were very lucky with his SENCo - Hannah Allen, aSpecial Educational Needs Co-ordinator. St Nicholas’ Primary CE, Alcester have been wonderful by the way. We ended up paying to go privately again to get him diagnosed and the diagnosis was autism with a profile of Pathological Demand Avoidance (PDA). PDA is particularly challenging as his brain sees things as a threat and, as a result, he regularly goes into a state of fight or flight and he fights. I broke down in a meeting at school with the SENCO and if felt like she heard and saw me - the raw me - and we talked about the many parents in the same position as me who needed a safe space. After all - if it were our partners hurting us we’d leave. But you’d never leave your baby.

“The SENCO was superbly responsive and set up a parent coffee morning for parent and carers to be together and share experiences. It was monumental in helping me - and others - with the isolation side of being a parent to a child who struggles and we could all understand and appreciate the challenges with shared empathy.”

The town of Alcester has always prioritised the community and Alcester Town Council’s has a working group that focuses on the health and wellbeing of people and looks at what areas it can support.

Jen has been very supportive of the working group and has been involved with it as a children and family worker for a local group of churches and a volunteer at group meetings.

At one meeting she attended she explained why SEND parents and carers needed support.

“I gave examples of the kind of emotions that were shown in the SEND coffee mornings at school. The representatives all felt this was something the town council could potentially help with and I was asked to attend the school coffee morning as a representative of the group to find out what parent and carers would like rather than us guessing. It was vital that we took the lead and direction from people who are living through the challenges.

“I was determined that SEND parents were heard so I was (perhaps) a bit pushy. I’d entered the room with the mindset this was our opportunity. Having felt isolated, overwhelmed and lost for the last 12 years since my journey with Oscar had started... there was a glimmer of hope for something wonderful to happen right here in Alcester and I had no intention of leaving until I’d convinced everyone in the room to go with it,” Jen said.

After the meeting she messaged parents and recalled their elation was palpable and a morale boost to “be seen” and that the working group would support the concept of a new group.

To all those parents and carers out there who need that helping hand, a voice to be heard or a shoulder to cry on, Jen had this message.

“You’re not alone. It is isolating and overwhelming at times but you are not alone. You’re worthy and valued and loved - even by your child who is calling you all the names under the sun. You’ve got this - even if it feels like you cannot bear to fill in one more form or attend one more blooming course but you’ve got us and you can come and spend time with us at SPEND.”