Perfection comes in all different shapes and sizes
For Leah and her family, it seemed like the struggle for an ordinary life would never end. With her twin sons’ school failing to provide the help they needed for their disabilities and a third child with a developmental disorder, it seemed like there was no one for them to turn to. After finding Unique Ways, they’re a happy family at last – with access to all of the tools and support they need to progress.
My husband and I were both settled in careers, had a lovely home, supportive family and great friends when we were blessed with identical twin boys. I strived to create the perfect family environment. We moved house so we could be closer to school, I never allowed the boys to go into paid childcare, and they were never looked after by anyone other than grandparents.
But as they grew, I noticed differences between them and other children – but having never really been around children before I had no real comparison. The boys seemed to excel in some areas of knowledge yet fail to hit basic milestones, and I began to worry. The professionals put it down to them being twins and, although it went against my better judgement, I went along with this. I now see that this was part of the denial process.
Once at school, the cracks began to show – communication was an issue, as were basic skills such as writing, reading and physical play. The school raised their concerns but assured me that with some extra help, an Individual Education Plan (IEP) and regular contact, things would improve. I started to feel worried and had a feeling of doubt and dread hanging over me so I threw myself into work.
We then decided to have another baby. The boys were very excited, and were looking forward to our new addition. In the meantime, things began to change for them – they were becoming more complex and experiencing changes in behaviours that concerned us.
They were not progressing with any self-care and were struggling with physical things, such as motor skills. The school had a large change in staffing and became an academy – the boys struggled to adjust and fell further and further behind. I knew something was seriously wrong – my husband and I spoke about it and he believed they were just immature for their age, and things would improve. This was his denial stage, and I could see it now having already been through it myself.
Our children, by this time, were hearing voices and self-harming. It broke my heart and I didn’t understand why this was happening and why us. I always believed that if we gave them the perfect family life then they would grow to be content, confident and, above all, happy.
We had had several referrals to the Children and Adolescent Mental Health Service (CAMHS) and had been awaiting an appointment for around 12 months when I decided to take them to see a private professional, who diagnosed severe developmental co-ordination disorder, dysgraphia, dyslexia, and dyscalculia. In addition to this, she believed that they both also had autism spectrum disorder (ASD) and, as such, she again referred to CAMHS in the hope that it would speed things up.
The boys’ difficulties at school continued, and the school refused to provide the level of support the boys needed. Some direct quotes included “They do not deserve help, they’re just bone idle”, “They don’t belong here, they should be in a special school”, “The LA won’t give children statements at this school as it’s a green leaf school” – I’m sure you get the idea.
Having always felt confident in standing up for my own rights I had no issues in standing up for my children’s’ and so I was in constant contact with the school. I arranged for the boys to have private occupational therapy and horse therapy, as well as Special Education Needs (SEN) tutoring, none of which seemed to be working – and the boys were becoming physically ill due to all the stress.
I then gave birth to another beautiful boy. He was rushed to Leeds for surgery as he had a birth defect that had been missed prior to birth. This was obviously a shock and very difficult for us as a family, as I was torn between the hospital and home. We finally brought George home and, for a short time, things seemed to pick up slightly. It was the summer holidays so the boys were happier, and we were grateful that George’s operation was a success.
It wasn’t long, however, before the cracks began to show again. George was not developing the way he should, he had persistent vomiting, and despite his moderate calorie intake his weight was rocketing. The boys were so distressed at school that the rocking, hand flapping, self-harming and voices had increased to unmanageable levels, and they were underachieving academically, having the reading age of five and writing age of four by nine years old. The school had become more awkward, and the relationship had broken down.
George was not sitting, rolling, crawling, babbling or even eating, and I was sinking. What was happening to my perfect family? Why did nobody care? Why would nobody listen? I stopped talking to friends and even family, and I resigned from work – I knew I needed to focus on my children and find a way for us all to move forward, but I didn’t know how to do this.
The twins had become so unwell that I was home schooling them and our baby had been diagnosed with a genetic syndrome and was being fed via NG tube. By the age of 18 months, developmentally he was aged six months.
A friend then sent me a cut-out from our local paper advertising a charity called Calderdale Parents and Carers – now Unique Ways. I had become so withdrawn and isolated, I was driven crazy with anxiety and preferred not to leave the house.
I felt like a failure. I knew that my children needed a diagnosis for their ASD, an Education Health and Care (EHC) plan, and a school that would meet their needs, but I had no idea how to get all of those things alone. I had read the framework and understood it, but I was constantly met with a brick wall and some excuse or loophole as to “how I had misinterpreted it”. I was exhausted, desperate, and at crisis point – so I rang the number from the cut-out my friend had sent me. I had no idea if they would even speak to me but I needed to try.
I got through to a lovely lady who listened patiently and empathetically as I sobbed my way through my tale. I said I had no idea what I wanted from them, but nobody else seemed to care. After about an hour I had composed myself once again, and she set out a plan that listed all the ways that they could help me. These ranged from the practical aspects to emotional support.
Firstly, I had lost my voice – and how on earth could I speak out on my children’s behalf without that? So I needed an advocate. An advocate rang me back straight away and arranged a meeting. I explained everything in full and gave her a list of the meetings and documents that I needed support with.
I had got to a point whereby just an email from the school would trigger a full-blown panic attack so my advocate wrote to the school on my behalf and asked that all communication was in future sent via her. The relief this gave me was vital. The LA wanted the boys back into school, but to achieve this it would mean meetings and talks between all parties.
So I told my advocate everything I wished to say at the meeting just in case I was too ill to go, or too emotional to speak. There have been several meetings where I would not have only been voiceless, but I was so emotional that I was unable to take in the information, and my advocate helped me through it. The meetings led to agreements being made and the boys went back to school, for a time at least.
I also wanted to begin a formal complaint via the school’s complaints policy, as I felt it was important that the school take accountability. Having three children with additional needs was keeping me very busy and I was unable to keep track of the process and timescales, but the advocacy supports again assisted me in doing this.
Secondly, I needed to obtain an EHC. The school weren’t going to assist me, so again it would be something I had to do myself. My advocate helped me to complete the paperwork and then went on to help me with the appeal when this was declined, which included taking notes when we were seeking legal advice. I was also assisted by an Independent Support Worker from Unique Ways who helped my family with section A, and spent time getting to know my boys.
Thirdly, I needed a diagnosis for the ASD if they were ever going to get the support they so desperately needed and deserved. I decided we would fund a private psychologist, but again I was restricted with time because of the children’s level of needs. My advocate researched the available psychologists and sent me a list of their details and what they offered.
The boys received their private ASD diagnosis and, although we still needed to wait for CAMHS, the report gave us more of an insight, as well as practical strategies.
Our day had finally come to attend a diagnosis meeting at CAMHS, and I was struggling to hold it together. My advocate accompanied us and took minutes. Due to the level of emotion upon receiving the diagnosis, these were so important as I was unable to process the information at the time.
Meanwhile, our complaint to the school had not provided an adequate response, so we decided we needed to utilise the SEND tribunal process again – our advocate assisted us with this. It’s hard for me to put into words the positive impact that the advocacy service has had on our family – without it we would not have achieved the outcomes we have. It gave me a voice when I was at my weakest and as time has moved on I have become strong again and relied on it less and less. But just knowing that it’s there to help others who, through no fault of their own, end up in a similar situation gives me great comfort.
Advocacy is vital, I cannot stress that enough. Disability or illness does not discriminate – it can happen to anyone at any time, and our families and children deserve to have their voices heard, and the opportunity to obtain the outcomes that they need to ensure they are able to be fulfilled and happy.
Unique Ways is a lifeline to families like mine. In the past year they have provided my family with training courses, counselling, advocacy, social events and independent support. It’s no lie when I say that they helped bring me back to life, it was my signpost for all things and showed me that I am not alone. I will be forever grateful to the friend who provided me with that newspaper cut-out, and I am in total admiration for what a group of people who truly care can achieve.
Me and my family still have a long road ahead of course, but we are once again a happy family who have learned to adapt to our situation and realise that perfection comes in all different shapes and sizes.