Real stories from families navigating SEND in Wolverhampton.
We believe lived experience matters. By sharing real stories from families, we help professionals understand what SEND journeys look like in practice; the challenges, the successes, and the impact of support when it works well.
These stories are shared with permission and reflect the experiences of local families.
When my daughter was diagnosed with autism at the age of four, we were just beginning to understand her needs and what this might mean for our family. She is now five years old and attends a mainstream primary school, where she is supported through the school’s inclusion curriculum.
The early part of our SEND journey felt overwhelming. Before diagnosis, it was difficult to know where to turn for help, and there was very little support available to us. Like many families, we were unaware of local support groups and services, and navigating the system felt confusing and isolating. One of the most challenging points was the transition from nursery to school, which came with uncertainty and anxiety about whether my daughter’s needs would be understood and met.
What made a real difference for us was early intervention. Support from the Special Needs Early Years Service helped us access the right guidance at the right time, and as a result my daughter received an Education, Health and Care Plan (EHCP) at just three years old. This early support gave us a clearer pathway and helped us feel less alone.
As a family, we have grown stronger through this experience. I am incredibly proud of the resilience we have built together. For a long time, it felt like we were operating in the dark, but by taking steps to seek help and connecting with the parent carer forum, my confidence has grown, and I no longer feel so isolated. There truly feels like light at the end of the tunnel. Early intervention has been vital in giving my daughter the best possible start, and I am proud that I pushed for support when she needed it.
Along the way, we have experienced both positives and challenges. We have generally felt listened to by professionals, and when services work well together, it makes a noticeable difference. However, transitions remain a difficult area, and accessing specialist services — particularly health and therapy support — can involve long waiting times. Like many families, we waited over two years for an initial assessment, and faster access to specialist services would make the biggest difference to our day-to-day lives.
If there is one message I would want decision-makers and professionals to hear, it is this: SEND support must be individualised. Every child is different, and what works for one may not work for another. Listening to families and responding flexibly can make all the difference.
My child is four years old, non-verbal, and currently on the autism pathway. They attend a private nursery and are supported by an excellent SENCO and the SNEYS team, whose understanding and commitment have made a real difference to our family.
Like many parents, I raised early concerns about my child’s development. One of the most difficult parts of our journey has been the lack of urgency when those concerns were shared. In SEND, time matters — delays can have a lasting impact on both children and families.
Navigating services has often felt unclear and fragmented. Communication with Speech and Language Therapy has required persistent follow-up, and agreed support does not always happen unless it is actively chased. Our request for an EHC needs assessment has passed the expected timescales, with limited communication about next steps. We have also been told that a diagnostic panel date may not be available for several years.
Despite these challenges, I am proud of the resilience we have built as a family. I have learned to advocate, seek information, and access external support to help my child thrive. Parents should not have to push so hard, but we do so because we know our children best.
What I would like decision-makers and professionals to understand is that clear communication, timely action, and listening to parents are essential. Delays and uncertainty affect not only a child’s development but also the wellbeing of families navigating the SEND system.
By working together, listening to lived experience, and acting early, we can create better outcomes for children and young people across Wolverhampton.
My son is 13 years old and has Autism (PDA profile), ADHD, and Generalised Anxiety Disorder. For many years, his needs were misunderstood because he is a high masker. At school and in clinical settings, he appeared to be coping, but at home life was incredibly difficult.
From a young age, I raised concerns and asked for help. Those concerns were often dismissed because professionals weren’t seeing the same challenges in school. What wasn’t visible was the toll masking was taking — the exhaustion, anxiety, and emotional distress that built up behind closed doors. Home became a place where everything unravelled.
Things reached a breaking point around three years ago when my son experienced severe burnout. Those years were the hardest of my life. Navigating the system felt isolating, and at times it felt like we were fighting to be believed rather than supported.
What changed everything was finding the right help. A local charity provided advocacy and stood alongside me through the EHCP process. With their support, my son was able to move into the right school setting and access the right combination of understanding, adjustments, and medical support. Just as importantly, connecting with other parents — through coffee mornings and peer support — reminded me that we were not alone.
Today, my son is thriving. He is happier, more settled, and able to learn and grow in an environment that truly meets his needs. I am incredibly proud that I didn’t give up fighting for him, even when it felt overwhelming — because seeing him happy and progressing makes every step worth it.
What I want decision-makers and professionals to understand is simple but vital: please listen to parents. A child presenting as “fine” in school or appointments does not mean they are fine everywhere. High masking is real, and parents are far more likely to be telling the truth than exaggerating concerns.
Families need a system that works with them — one that values lived experience, collaborates with parents, and ensures no family feels forgotten.
I’m the mum of a 15-year-old daughter with profound and multiple learning disabilities (PMLD). Her early life began without any signs of difficulty, but by ten months I knew something wasn’t right. Despite raising concerns, I wasn’t listened to and was made to feel like an over-anxious first-time parent.
When my daughter was 13 months old, she had her first epileptic seizure. That one seizure became many, and within a day our lives changed completely. She lost her speech, strength, and independence, and what followed was a long and challenging journey through hospital stays, assessments, and uncertainty.
After many years, my daughter was diagnosed with a rare genetic condition. She now lives with epilepsy, is non-verbal and non-mobile, and requires complex care. Along the way, we’ve had to fight hard to access the right support and equipment — often having to prove needs that were obvious to us as her parents.
What has carried us through is the people around us: a health visitor who stood by us, a school that treats my daughter like family, and a community that loves and includes her. I’m proud that we’ve never let life shrink around her — she is part of everything we do.
My hope is that professionals truly listen to parents. Our lived experience matters. And every day, my daughter reminds us that strength, joy, and love can exist alongside even the greatest challenges.
Our 7-year-old son was diagnosed with Autism at the age of five, and we are currently navigating the process of getting him assessed for ADHD. He attends a small class in a mainstream school with five other children with SEND, but we are hoping for a place in a specialist school as his needs require more intensive support—though currently, all the specialist schools are full.
The Challenges We Face
Our journey has been far from straightforward. After his Autism diagnosis, he was discharged from the paediatrician at the GEM Centre, leaving us without the specialist support we desperately needed. His behaviour has been challenging both at home and at school, and sleep difficulties have affected our whole family. Re-referrals to healthcare professionals mean waiting again for support, which can be frustrating and exhausting.
Finding safe and suitable activities outside school has also been difficult. Our son is a runner and unaware of danger, which limits the places we feel confident taking him. Opportunities for SEND-friendly activities in Wolverhampton—especially at accessible times—are scarce.
What Has Helped Us
We have been incredibly fortunate with his school. Even in a mainstream setting, the staff are understanding, supportive, and attentive to his needs. They know him deeply, support him when he’s dysregulated, and help him navigate the challenges of daily school life. He feels safe and enjoys being at school, which has made a big difference, even though we know he will need more specialist support as he progresses.
Moments of Pride
Our son has made remarkable progress. He has developed greater independence, built friendships, and learned to regulate his emotions more effectively, especially in stressful social situations. He is bright, curious, funny, and clever, and these small yet meaningful steps give us hope and joy every day.
What We Want Professionals to Understand
Parents shouldn’t have to beg to be listened to. Families already carry so much responsibility and stress; concerns about our children’s wellbeing should be taken seriously without constant advocacy on our part.
The Change We Want to See
We hope for improved access to specialist health services, better coordination between education, health, and social care, and more availability of appropriate school placements. Families need clear, accessible information and support without lengthy waits or repeated battles for help.
Final Thoughts
While the journey has been tough, the right support makes all the difference. A caring, knowledgeable school staff, and a little understanding from professionals, can transform the everyday experience of a child with SEND—and their family.
About my child
My daughter is 12 years old and has Autism and Epilepsy. She attends an independent specialist school.
Our SEND journey
Before my daughter was diagnosed or had an EHCP, we went through an extremely difficult period. She attended a mainstream primary school but struggled significantly from an early age. By Year 1, she was frequently dysregulated, sent home, and excluded. As a first-time parent, I was made to feel that her behaviour was “naughty,” even by professionals, which was incredibly distressing.
The lack of understanding and support led me to leave my job to care for her. Despite ongoing concerns, assessments and diagnoses took a long time, and during this period she attended a PRU and experienced further exclusions. Covid added further delays and challenges.
At age 8, after severe sleep difficulties were repeatedly dismissed, my daughter had two tonic-clonic seizures and was diagnosed with epilepsy, with sleep deprivation identified as a trigger. CAMHS referrals were rejected multiple times, despite the clear impact on her mental health.
What helped
The turning point was her placement at a specialist school. Although it was out of area and unfamiliar to us, it has completely changed her life. Since starting there in Year 4, she has not been excluded once. She is now in Year 7, thriving academically and emotionally, has friendships, and feels safe and understood. I only wish she had been able to attend sooner.
What I’m proud of
Her confidence, creativity, and love of writing and drawing. She now creates characters and stories and has ideas about what she wants to do in the future.
What professionals need to understand
Please truly listen to parents. We are often dismissed too easily, and early listening could prevent years of distress for children and families.
What I would like to see change
More SEND-friendly social opportunities for older children, especially non-physical activities where they can connect and talk with peers.
“When my daughter finally found the right school, she didn’t just cope — she flourished.”
