The story that lead to SEND Parenting

SEND Parenting which stands for Specialized Education for Neurodiversity was born out of years of frustration, anger and stigmatization in the education system with my daughter Alexandra. The impact of the fight to get her the right educational setting affected me both mentally and physically and at times I felt very alone and unsupported. They say nothing bad comes without some good and that is in effect what I am trying to do with the SEND Parenting Podcast turning my frustration into something positive that hopefully will support other parents and help them on their journey with their children.

My daughter Alexandra was diagnosed with Cerebral Palsy at nine months of age a complication of the meningo-encephalitis she had at nine weeks. Her diagnosis was a left hemiplegia with cerebral ataxia and her prognosis was unknown in terms of her motor function ability to walk and run. Being a Doctor myself and knowing way too much I was terrified of what that meant for her future. We were living in Swaziland at the time and resources there were non existent so I needed to create her own care plan. Utilizing support from neuro-physiotherapist based in Johannesburg and flying in a brain gym specialist from Cape Town alongside looking at how I could bolster brain development from nutrition her care plan was put into action.

She responded really well and regained the use of her left arm and eventually was able to walk and run un-aided. It was a huge moment and I am eternally grateful for her progress which I believe was lead by her stubbornness, resilience and determination. No matter how many times she fell down, she picked herself up and tried again.

My medical knowledge about cerebral palsy was that it was a motor and co-ordination condition.

We moved to the UK when Alexandra was two years old to get better support and access to care. Although I sound American I started out British and then moved with my family to the US when I was 7 years old.

In nursery and reception it became clear that Alexandra had fine motor issues with both hands and struggled to dress and hold a pencil.

I selected a private school for her hoping that smaller classrooms and child to pupil ratio would be beneficial.

The years of her primary school passed  with me constantly in multi-disciplinary meetings with the school trying to get them to accommodate for her fine motor issues all the while thinking this was her only barrier to accessing the curriculum. The truth of the matter was it wasn’t just her cerebral palsy that was holding her back educationally, a point the school had not communicated with me.

It was clear in year 3 that she was not thriving and the gap between her and her peers was ever widening causing my very positive child to be riddled with anxiety and a disengagement with school. The headmistress let slip that she didn’t see Alexandra being able to cope beyond year four at their school.

It was a shock to me and a wake-up call this was not the right place for my daughter to reach her potential. It felt like the school just wanted our tuition until such time as they would ask us to leave. Taking this sentiment to heart I gave  my one term notice and started looking for alternative options. Little did I know those alternative options would also not want  my daughter. The doors that were slammed in my face with many not even letting me speak to their SENCO department highlighted the ignorance of educators to the label of Cerbral Palsy.

Her current school informed me that if I were to stay for another year they would help me obtain an EHCP for my daughter. Confused I asked what is an EHCP….we had been attending the school since my daughter was 3 year old and she was now 8 and this had never been mentioned before….. They informed me it was an educational health care plan and it was very long and confusing to fill out so they didn’t like to apply for many because it was a drain on the SENCO’s resources. Luckily they did also mention that there was a specialist independent school called the Unicorn that they thought would meet Alexandra’s needs.

I went and visited the Unicorn and met Mr. Day and learned  about the ethos of the school and the commitment to strive for each child’s potential. I cried in the parking lot and prayed she  would get in and that I could somehow afford the fees. As a single parent on one income it was going to be challenging but knew I had  found the right place.

Alexandra was tested and found  to be dyslexic, have processing delays and a poor working memory. Not something that is easy to take onboard as a parent but at least now I knew what we were facing and could come up with a plan with the school to help her reach her potential.

Having learnt about the EHCP I started the ball rolling to try and get one for Alexandra starting my journey in 2019. I mistakenly thought the school had to help me apply for an EHCP. Covid hit and the SENCO at the Unicorn said they couldn’t help with the EHCP until Alexandra had been at the school in person. The reality is a parent can apply on their own and the assessments Alexandra had at the Unicorn would have been enough evidence for application.

Hindsight is 20 20 and is one of the impetus for starting the SEND Parenting Podcast, I wish I could have learned from other parents and specialists on what was the right pathway instead of floundering by myself and incurring great debt to keep my daughter in her independent specialist school while I fought to get her EHCP.

How I got her ECHP eventually in July 2022 is another story which I will tell you in the next SEND Parenting News Letter.