Automated Transcript Episode 10
Tenth Episode: Inspiration for SEND Parenting
Dr. Olivia Kessel’s and her daughter Alexandra’s journey
Please excuse any errors as this transcript has been automatically generated
Dr Olivia Kessel:
Welcome to the SEND Parenting Podcast, focused on supporting, inspiring, and empowering parents and their Neurodiverse children. I'm your Neurodiverse host, Dr. Olivia Kessel. We'll be speaking weekly with experts in the world of neurodiversity. No topic is too big or too small for us to discuss. We will include things like, how do you navigate education? How can you understand what your child's legal rights are to an education? Practical advice on neurodiversity, and most importantly, hearing the voices of other parents just like you. Looking forward to having you join us weekly as part of the Send Parenting Tribe.
Dr Olivia Kessel:
Welcome to the 10th episode of the Send Parenting Podcast with over 500 downloads. I really, I can't believe it. A big thank you to all of you who've listened, shared and fed back, that the show is inspiring and supporting you on your journey. Some people have asked me what my plans are, is there a magic number of podcasts? And my answer is no. There are so many episodes still waiting to be edited and so many more I'm inspired to do. Hopefully you feel the same way and will keep listening. I'm learning so much. Thank you for those listeners who've reached out with recommendations on authors, podcasts and topics to explore, and a big special thanks to the parents who've shared their stories. It's been so powerful to hear the journey of other parents and how it resonates with my story. I don't, I have felt less alone and I've really felt inspired to feel hope and to look at life through a different lens.
Dr Olivia Kessel:
In this episode, we are going to do things a little bit differently. Instead of having a guest on the show, I am going to interview myself and share with you a bit of my journey and how it led me to creating the SEND Parenting Podcast. I'll share with you a little bit about me and a lot more about my journey being a warrior mum for my daughter Alexandra, and how that journey has inspired me to start this podcast. Many of you might believe that I am American by the accent that you hear on the podcast, but actually, I was born in South Africa, probably had a South African accent then moved to England, had a British accent, and finally ended up with the American accent. I am a medical doctor and I have spent most of my adult life living between Africa, Ireland, and England. My daughter and I have been living in England for the last nine years and definitely think of it as home. So we've been learning about the education system on many different fronts, which I'll talk about in this podcast.
Dr Olivia Kessel:
But enough about me. I really want to share with you today the story and the journey that I've had with my daughter Alexandra, who is now 11 years old. She has really been the inspiration and the impetus for me starting the SEND Parenting Podcast. Our journey began in Swaziland. It might sound a bit crazy, but I had moved as a single mother pregnant with Alexandra at eight and a half months to Swaziland to run an outreach program to help HIV patients adhere to their HIV medications. I had rented a house in the hills and I had managed to hire a nanny, which was affordable actually in Africa to help me with my new baby. I had Alexandra in Johannesburg in the hospital there had a very normal birth. Well actually it was a C-section, so not exactly normal and not planned, but, um, <laugh>, she came into the world very healthy and doing well.
Dr Olivia Kessel:
And then about nine weeks of age, she developed a very high fever, which I attributed to some of her vaccinations, u but it didn't get better and didn't resolve. And then she broke out in a rash from head to foot. And at that point, the pediatrician advised me to jump in the car and drive as fast as I could to Johannesburg, which was about a four and a half hour drive from where I was living in Swaziland. And one of the scariest trips that I've taken. And actually during that journey, I also started to develop a very high fever as well. We went to the pediatrician and she got us admitted to the hospital. And it was there she was diagnosed with having the Coxsackie virus, which is a pretty self-limiting virus. It causes hand, foot, and mouth. Kids usually get it when they're like six or seven years old.
Dr Olivia Kessel:
So we were discharged from the hospital and told to stay close just in case anything else happened. And unfortunately, something did happen two days later. And I was very happy that we were so close to the hospital because she had become as stiff as a board. Her neck wasn't moving a nd I rushed back to the hospital, calling the pediatrician and we were admitted urgently because basically the viral infection had spread to her brain resulting in meningo-encephalitis, which is basically a swelling of the brain and the spinal cord. They did a wonderful job. There was a few days there that I didn't know if she was going to make it. They gave her immunoglobulins from other patients who had had the Coxsackie virus because I was still really sick at that point too. Not that it had spread to my brain, but apparently I had given her no immunity, which was also a very strange thing that I hadn't been exposed to this virus.
Dr Olivia Kessel:
So I wasn't able to give her any immunity through my breast milk. And, yeah, she was very, very sick. So she recovered and the doctor at that point had said that, you know, a potential long-term effect of that illness could be that she could suffer from cerebral palsy. But we went home and life continued as normal and I didn't really notice anything developmentally or physically wrong with her. Um, she wasn't walking or anything then she didn't use her left arm at all, which was unusual. And actually children don't have a predisposition to their left or their right arm. She was only using her right arm. And that was a tiny hint. And then when I was, you know, scratching the bottom of her left foot, actually, she had what's known as a positive babinski reflex. So her toe curled upwards, which as I'm a medical doctor, is a sign of an upper motor neuron lesion, which means she's had some damage to her brain.
Dr Olivia Kessel:
So those were kind of the hints. And then when she was trying to walk or pull herself up, she wasn't really able to. And when she didn't meet her normal milestones for walking, and that combined with that positive reflex was enough for me to go and ask to have an MRI of her brain and to have a look at what was going on. And that was one of probably the worst days of my life is when the results of that MRI came back. And I remember we were up in Johannesburg, I was at my godmother's house, she was asleep having a nap, and I got the results and I got the MRI sent through to me. And it's times like this actually as a mum that you wish you weren't a doctor because looking at that scan and just realizing what that implications would mean for my child, uh, was just enormous.
Dr Olivia Kessel:
It was hard to reconcile, you know, looking down at her sleeping in her cot, that that was the same child whose MRI I had just read, where it looked like Swiss cheese. So, that began my journey into learning about neurology more and cerebral palsy. So we went and got a neurology appointment at that point with a lovely neurologist who basically couldn't tell me anything, was how I felt. I said, well, what are the chances of her being able to walk? What are the chances of her being able to run or to talk or to keep up with her peers? And really the neurologist couldn't tell me anything because, you know, their brains are still developing, their brains are still myelinating, which is basically the conductors when you go from one nerve cell to the next nerve cell that makes the the message speed along.
Dr Olivia Kessel:
So all they could tell me is that from her MRI, she had a left hemiplegia, cerebral ataxia, which basically meant she couldn't use really well her left side of the body, particularly her leg, but also her arm. And that her balance was completely off. So she felt really wobbly. And so it was hard for her to balance in terms of how much that was going to affect her. We were just going to have to wait and see and put in, you know, a program of action for her. Now I have a great philosophy and pretty much everything I do in life is that if you throw enough crap at the wall, some of it's going to stick. And I told the neurologist this, and she said to me, you know, Olivia, I wish more of my parents had that attitude. Because sometimes the urge is to stick your head in the ground and to ignore what's actually happening.
Dr Olivia Kessel:
And the sooner you actually put interventions into place, especially with a head injury or a brain injury, the more likely you are to get a re networking or get more functioning. So because I lived in Swaziland, it was a little bit challenging. We organized a program of neuro physiotherapy. So we would come to Johannesburg and have a block of a week of neurophysiotherapy, and I would bring her nanny from Swaziland and she would learn, um, all the exercises that needed to be done. And, and the physio at the time said to me, you know, you are so invested as her mother that you don't have the patience that your nanny does. And so my nanny, I was very lucky actually, to have that in Swaziland, was able to take care of that. And her patience and her calmness so far exceeded mine where I was very emotional and very attached to what her ability was at that time.
Dr Olivia Kessel:
So she, my nanny at that time was called Khosi. She was a great help. I also looked into the non-traditional things. So I looked into Sacro cranial with Brain Gym, and I had a lady come and stay at our house in Swaziland and help teach me and do it with Alexandra. I looked into nutrition, bone broth, eating sardines, and funnily enough, my daughter still loves sardines to this day. So really put together a treatment regimen, which really did stick true to what I said to that neurologist. You know, I'm gonna throw as much crap on the wall and see which of it helps my daughter and I'm not going to limit myself to anything. I'm going to try everything in my power to try and see if I can get more functioning and utilize the areas that had been damaged from that infection. But, you know, having that diagnosis, I just had so many fears about what is her future going to be like?
Dr Olivia Kessel:
Is she always going to be different? Are her disabilities going to be visible? I don't know why that mattered to me, but it did at the time. I was readjusting to my daughter and I had some great advice from a UK chat room, which said, your daughter is still your child, she is still the child that you've known for almost a year. There's nothing's changed. It's just the diagnosis. She is still the same person that you've loved since she was born. So don't let it define who your child is. And I thought that was really, really good advice. It gave me strength to go on. And I have to say, you know, Alexandra has a resilience and a not giving up attitude. You know, I would hold her hand to try and help her to walk and she would throw it away and she'd try it herself and she'd fall down and she'd pick herself back up again and fall down, pick herself up again, fall down.
Dr Olivia Kessel:
I mean, I would've given up long before she gave up. And eventually she started to walk and she was like a little teapot with her, with her arm. But she got there. And that was a huge moment. Her speech was also delayed. I looked for speech therapists and it also, it was becoming clear that living in a more remote area of Africa probably wasn't the best for Alexandra or for me in terms of finding a network. So we decided when she was two and a half to move to the UK, she started nursery school with the look to, to move on in that school into primary school. And I had chosen a smaller private primary school because there were more teachers to less students. So there was about 11 kids with a teacher and a teaching assistant, and it was local to where I was living.
Dr Olivia Kessel:
I made them aware of the challenges that she had and she started school. And you know, at first you don't notice really any differences between your child and the other children, maybe in terms of communication and some frustrations of communication. She was known as the bitter, pretty much because of her frustration at not being able to speak. But all the parents were very kind and understanding about that. But as she progressed within the school system, when writing is difficult because you have fine motor issues, due to the cerebral palsy. And then also she had issues with phonics and reading, which is, you know, she's later been diagnosed with dyslexia, which she gets from me. But also cerebral palsy can cause a dyslexic like picture and a learning type spiky profile. So with not having really accessed both of those and also having issues with her speech as she progressed within the school, it was becoming more and more challenging.
Dr Olivia Kessel:
And I was on a journey myself because incorrectly as a doctor, I felt that cerebral palsy was purely a motor condition and that it was her inability to write that was holding her back. Now that was incorrect. And I wish that maybe the school had been clearer with me in terms of her educational needs because it wasn't just the fine motor. It was getting more and more challenging for her, especially when she moved up to year three, which in that school was kind of from the lower school to the upper school. And where the teaching assistant and the support became less. The school was open and honest with me and said, you know, we feel that she should have one-on-one support in the classroom. And, you know, that would cost me 3000 extra pounds a term, which I just didn't have. So I tried to find tutors outside of school who could help her.
Dr Olivia Kessel:
And I did find some wonderful tutors, but it still wasn't bridging that gap. They also wanted her to have a classroom that was high up in the school, which wasn't possible with her cerebral palsy. So the head mistress took me, you know, to see the classroom and they were very good. They said, you know, we willmove it to the lower floor. But she also mentioned during that period of time that she didn't really see Alexandra being in the school longer than year four, that she wouldn't be able to cope beyond that point. And I have to say, it was a real shock to me that they didn't see her finishing with the school. I just hadn't gotten that memo. So I went home and thought about it and I thought, you know, my daughter isn't flourishing in the school. She was becoming more anxious to go to school.
Dr Olivia Kessel:
She was feeling more different. She was recognizing that gap between her and her peers. She was asking, why do I have a special folder? And everyone else is doing something else. And it was all leading to anxiety and destroying her confidence. And she's normally a very happy child and she wasn't happy anymore. So I had to ask myself the question, is this the right place for her? And the resounding answer was no. And with private schools, you have to tell them a term in advance before you canceled. So I quickly shot off an email saying, we're not coming back next term, <laugh>. And this was before the Easter term <laugh>. And I had no idea where we were going to go, which on hindsight maybe wasn't the best of decisions. But you know what, she wasn't going to stay there.
Dr Olivia Kessel:
So I started looking around my neighborhood, looking at government schools, looking at private schools, looking at any school I could find to see what would be a better environment for her. And I decided I would be honest about her challenges and see how those schools could meet those challenges. Because I didn't want to jump from the frying pan into the fire. And the sad reality was that meant that not a lot of people wanted to talk to me. One school, which was known for being great in SEN provision, didn't even want me to come in. And in fact, the SENKO wouldn't speak to me. She had the admin staff call me back and tell me that they didn't think my daughter would be appropriate for the school. It was like a, a knife in my side.
Dr Olivia Kessel:
I went to a mainstream primary school and they told me, you know, I explained about her fine motor and I said, you know, she'll need a laptop in class because she really, she needs that to be able to get what's in her head out because of her fine motor issues. And the headmistress there said, well, you know, unless you have an EHCP allowing her computer, she wouldn't be allowed a computer in class. And I was like, well, what is an EHCP which actually stands for Educational Healthcare Plan? Well, she said, it's something that you need to apply for and it can take a really long time to get it, and it's very difficult to get. But that would allow her to, because it has to be fair for other children in the class. Now, whether or not that's actually true, and I don't know if it is, it was probably more that they didn't want her in that school with her needs.
Dr Olivia Kessel:
So I ended up really finding myself between a rock and a hard place of what do I do now? So I went back to the school she was currently in and I said, you know, I don't know what to do. I haven't found an alternative school for and what is an EHCP and why haven't you mentioned it to me? Because she's been at your school since she was three and a half. And they said, well you know, it's a very complicated process and it takes a lot of the SENCO's time up and it can be very distressing for the parent. But you know what, maybe we could help you with that. If you were going tostay for a little bit longer, we could help you with that. And I said, well, you know, I need to mental note, go and learn more about this.
Dr Olivia Kessel:
Thank you but I think we still need to find a better solution for Alexandra. And they said, you know, based on Alexandra's profile, we think that the Unicorn, a specialist school in Abington might be the right place for her. So I called up the Unicorn and I got a meeting with the headmaster there Mr. Day, and I went not feeling very hopeful to the school. And I had what I can only describe as an aha moment because the way Mr. Day talked about the students in the school, the way he talked about a child's potential, the way he talked about how they utilize technology to bridge some of the challenges that kids have, just was like music to my ears. So he explained to me that she would have to come in for a two day testing period and see how she fits in, and then we could see if this was a right match for her.
Dr Olivia Kessel:
I went back to the car park and I sat in my car and I literally sobbed because I didn't think places like this existed. And then I thought to myself, how am I gonna ever afford a school like this? And, um, I thought, you know what? I will cross that bridge when I come to it. So we had the assessment and she did have a very dyslexic profile with a very spiky, uh, look to it. And they felt that she would be a good fit for the school. At the time, I had no idea how limited spaces were for the unicorn school. I have just recently done a podcast with Mr. Day and he said usually they get about 200 applicants a year, a hundred of which would be would be suitable for the Unicorn. But they only have 19 places a year at the unicorn.
Dr Olivia Kessel:
So not very many. And when I spoke to him at the end of last year, he said in the term for the end of 2022, in that first term, they'd had 150 inquiries for the school. So the numbers have grown extensively. And he said, if I had come to the school now, there would be at least a year waiting list for Alexandria to get into the school. I also then embarked upon my EHCP journey, which probably could be an entire another podcast on its own, as I'm sure anyone who's gone through the process can attest to. It was one of the most painful, excruciating times. And I mean, I think it took me about two and a half years, and that was really multi-factorial in the reason it took two and a half years. One, complete lack of knowledge and misinformation.
Dr Olivia Kessel:
I didn't know about an EHCP. She should have had one from when she was little. I didn't know that you as a parent could apply for one yourself. So I thought the school had to help you.... Incorrectly. So when we moved to the Unicorn, which was actually just before Covid was declared, the SENCO at the time there had said, well, you know, we need to see Alexandria in the classroom before we can help you with that. They've now changed their SENCO program. And Mrs. Foster's come on board and the information is much clearer. But basically as a parent, I could have applied for an EHCP myself. I didn't need to have the school's input. It was up to me as a mum. So that wasted a lot of time. And then finally, when I did apply in July of 2022, there was a lot of backlog due to COVID.
Dr Olivia Kessel:
The local authority kept missing their own deadlines repetitively. And then we started to fight over what was the provision of her care and how they would meet that need. It's worth mentioning here that as a summer August baby, I didn't start Alexandrian reception after she had just turned four, but rather ask that she wait until she turned five, which actually made her outside of her actual year group by three weeks. When the local authority sent back the EHCP, it showed that they felt that Alexandra's best needs would be met by skipping year six to put her back in her age group, although she would be the youngest by a year almost in that class, and going into a large mainstream school with 35 kids in a class, and that that was in her best interest and that they would provide some one-on-one support and that they felt would be what she would need.
Dr Olivia Kessel:
Now at this point, Alexandra had been at the Unicorn, I think for a year and a half, and was doing really well. Her confidence was flourishing, her reading was improving. She was going from strengths to strengths. So the thought of pulling her out of that environment into the environment they suggested and putting her ahead a year didn't make any, any logical sense to me whatsoever. And in fact, infuriated me and just made me wonder, you know, what are they thinking? And I had to hire a solicitor, and the solicitor and also the SENCO, Mrs. Foster at the Unicorn said, Dr. Kessel, your daughter fits every criteria for needing a specialist school. She has need in every bucket, which is not something you want to hear as a parent. You know, I didn't, I would love for my child to be able to go to mainstream school.
Dr Olivia Kessel:
I would love for my child to be able to pursue her education, but that's not the case. And so when it's so clear to others who are in education, how can this be so misaligned with what the local authority thought was best for my child? So needless to say, we went to tribunal and we had our own experts, which cost a lot of money as well and are very hard, assessments and reports to read. But, they helped me to map out what is the best solution for my daughter and evidence that, and the sticking point, and it felt like death by a thousand knives was the moving her up a year, which she's three to four years behind her peers. So moving her up a year, I was ready to fight that to the end and the night before the tribunal, which I believe is a very popular time for the local authority to concede, they did concede, which I believe they probably have their attorneys on payroll.
Dr Olivia Kessel:
I certainly didn't, nor did I have my experts on payroll. So for me, that meant I had to pay for my solicitor, I had to pay for my experts because it was too late. You have to pay for them. You can't cancel at the last minute. So I incurred all of that cost from something that should have, I believe, been a really cut and dry case, but rather took two and a half years to resolve a year and a half my fault a year, the local authorities dragging their heels. But at the end of the day, they did concede we had to go to the tribunal because it was too late to to cancel it. And I was warned by my solicitor not to kick off about the local authority in that meeting, which I did not. And I have to honestly say I cried again, and I'm not a very cry person, although it sounds like it from this podcast, I cried again because it was as if all my Christmases and all my birthdays came together when they said that they would provide for her and that she could go to the Unicorn school.
Dr Olivia Kessel:
I was at the point I had borrowed money from my father to be able to send her for the two and a half years that I had to the Unicorn. And I was at the point of having to sell my house, which I would have done to continue her education there where she was doing so well. So a long story but I think there's so much more to talk about in terms of EHCP and the struggles that parents have. But I felt so frustrated and I felt so alone. And even my health, like my heart rate was up 15 beats per minute increased from what it normally is. I was so stressed during that period of time, and I have the benefit of being a doctor. I had the benefit of being able to borrow money from my father and I still really struggled to get her what she needed.
Dr Olivia Kessel:
And there's nothing worse as a parent as not knowing if you can give your child what they need so that they can get the right education, the right support to reach their potential. And that's really was the inspiration for me starting this podcast because I would have loved to been able to hear other people's stories and to have had information about the legal aspects and to learn from other educators in terms of what was possible. I didn't even know what a specialist school was. And information is power and you need power to be a warrior for your child. So I hope that the effort for these recordings that I have done for the podcast are helpful to other parents and they are still helpful to me. I really gain a lot from everyone I talk to and I become more and more inspired to do more and to follow others who are leading the way in terms of changing the way we think about education and changing the way that we look at our children and how we can inspire them to learn and how we can help them to reach their potential.
Dr Olivia Kessel:
So I get as much from the podcast as I hopefully am giving, and I appreciate you listening to me, for this 10th episode and hearing a little bit about my background story. Thank you so much for listening to the 10th episode of the SEND Parenting Podcast. If you are new to the show, please follow us to tune in weekly. With new episodes being released every Thursday, it would be great to hear from you and get your comments and feedback. Please reach out either on social media, at Facebook or Instagram at Send Parenting or through our website at www.sendparenting.com. Wishing you an amazing week ahead.