E was about a year old. My husband and I were having dinner at the kitchen table. E was on the floor in his playpen, lying on his back as I’d placed him in there a while ago, staring up at the ceiling. A lot of the time that was all he did. When he didn’t cry or breastfeed obsessively, that is.
That night, my husband turned to me and said, “He’s lies there like a vegetable, Paola, all the time. Our lives are over.” That night my emotions lashed between despair, the realisation that I had to admit things were terribly wrong, and a deep maternal belief that there was a future. My baby needed someone to stand up for him, and that someone had to be me.
I want to tell you what happened next, and where we are now, because our lives are not, in fact, over. But to get from that dinner table to this article, we had to walk through a very long, very dark tunnel. I am writing this for other parents who are somewhere inside that tunnel because it can be very hard to see the light at the end of it.
What we discovered in E’s first year
By the time E was one, we had a catalogue of diagnoses. He had a hole in his heart. He had a confirmed dairy allergy, and tests showed he was also sensitised to peanuts and hazelnuts, meaning he was on track to develop full allergies to those as well. He had left-sided weakness through his entire body: his left lip did not lift when he smiled, his left eye did not open completely, his left foot was pronated, and he could not use his left arm properly. He was not meeting his milestones. He didn’t sit on time. He didn’t crawl on time. He cried, almost constantly.
He breastfed every forty minutes, day and night. Sleep was a distant memory. He did not pull up, and he couldn’t stand, he had no balance. He did not say any words. He wasn’t interested in anything, didn’t engage with his toys in a meaningful way and did not even show an interest in television. I would have given a lot in those days to be able to turn on Peppa Pig and have a child who wanted to watch it… But my child was not doing any of the things a one-year-old is supposed to do.
At that dinner, looking at him lying on his back staring at the ceiling, I understood exactly what my husband meant. I could see the future he was seeing. I could see myself, ten years on, pushing a non-verbal child in nappies in a wheelchair, a child whose bag I would always be carrying because it contained his EpiPen.
Many families live this life with love and dignity. Many families struggle and many relationships can’t survive it. I knew, that night, that if there was any way to change E’s trajectory, I was going to find it, at any cost. I was not going to accept “over.”
Professor Lack, and two allergy programmes in parallel
We started addressing the allergies when E was six months old, because they were the most immediately dangerous. We were fortunate to be seen by Professor Gideon Lack of King’s College London and Evelina Children’s Hospital, whose research has reshaped how paediatric medicine approaches food allergy. Under his care, we ran two programmes in parallel. For the dairy allergy, we began oral immunotherapy: gradually increasing doses of dairy under medical supervision. For the nuts he was sensitised to but had not yet developed full allergies to, and for the full range of common allergens more broadly, we followed a programme of early, controlled introduction, feeding my tiny baby carefully measured amounts to build tolerance before full allergies could establish. Both approaches were slow, painstaking work. It required extraordinary patience from all of us, especially me.
There is a particular kind of nerve required to feed your baby, on purpose, the exact foods that could send them into anaphylaxis, even when a leading specialist is guiding you. I did it because I trusted the science, and I trusted Professor Lack. And I believed then, as I do now, that food can be medicine. But in the first days and weeks, I have to admit, I felt every dose.
But it worked. E now has no known allergies. His favourite food is cheese (and well, pizza and calamari). I do not carry an EpiPen.
Physiotherapy, and the realisation that gave me hope
The physical work was equally long. We could not get any meaningful therapy on the NHS, the health visitor insisted we would only qualify after age two. So we went private. E had severe proprioception issues. He did not know where his body was in space. We worked on rolling. We worked on crawling. We worked on crossing the midline, the fundamental developmental skill of moving one side of the body across to the other.
I am not a specialist, but by the time you have spent a year sitting on a mat with your child (and read way too many articles online) you start to see patterns. And the pattern I saw was this: physical development has to come first. He wasn’t going to talk or play normally until he could move normally. Every other therapy E had after that, and there were many, was built on the foundation of that initial physical work. My aim was to get him to stand and then walk.
The Nemechek Protocol
Then, at around two, I found the Nemechek Protocol for Autism and Developmental Disorders while randomly browsing mum groups on Facebook. I will write about it properly in a separate article, because it deserves one. What I can say here is that I put E on it immediately, it struck me as a very healthy and safe thing to try, and the results were rapid. Within days, he was engaging with basic baby toys he had never touched before. Within a few more, he could stand. Before that, he had zero balance and would fall like a plank the moment we let him go. Once he could stand, he took his first step within weeks.
All of that happened right before the first COVID lockdown, which meant that his neurologist appointment, I’d fought so hard for, got cancelled. Whatever support or answers I had been hoping for vanished at that point, putting us as a family in what felt like yet another impossible position.
COVID, and finding our own workarounds
We were stuck. There was no NHS support during that period. Yet after some months the neurologist, a retired lady who had gone back to help during the pandemic, did come for a home visit. By that time E was walking and she advised that he should go to nursery and be with other children. He could not go to nursery, though, because he would not engage with the staff and I was not allowed inside the room with him because of the restrictions.
Eventually we found a woman who sometimes freelanced at the nursery, and we paid her to come and look after E at home a few times a week for around six months, so that he could get used to her as a person. Once she was someone he knew, we were finally able to send him into the nursery with her already working there, and then he could tolerate the environment because he had someone there he could trust. This is the kind of workaround that becomes normal, when your child does not fit the systems that exist and all existing systems break down in the face of the strange and rigid new normal we lived through in those days.
Helen, Andrew and the programme of repetition
He also would not engage with television, so he could not learn from it. We tried a specific programme designed to help autistic children build engagement with the world, and for a couple of months we simply strapped him in his pram and let him watch it again and again. Slowly, he began to engage and pick up on things. Now he was walking, I figured language was next on my list.
Around the same time, we met Helen, a lovely Ukrainian woman who came to look after him. Helen was, above all, persistent. She came back day after day, doing the same puzzles, the same developmental exercises, the same small games, until E started to meet her halfway. I do not think I can overstate what someone with that quality of patience gives to a child like E. She kept showing up.
At the same time we saw Andrew Brereton from the Snowdrop clinic, who provided a programme of physical exercises, based on multiple repetitions a day, to improve E’s proprioception, skin sensitivity and neurological development. This was also very successful.
During the following years I met many professionals, most of them private, who provided support, information and understanding. I home-schooled. When I was exploring tutoring options, Sara from Sherpa Tutors told me:
“Neurodivergent pupils often process information differently, making personalised teaching programmes particularly important. The focused individualisation needed can be difficult to deliver consistently within mainstream education. One-on-one tuition from a specialist who knows the most effective learning techniques for a student’s particular SEN, can make a real difference to their relationship with learning and wider emotional development.”
The autism question
E liked most people but for whatever his reasons he just wouldn’t make eye contact with some of the professionals we saw. So they thought he was autistic. I did not agree, and I want to be careful about how I explain this, because it is not a criticism of an autism diagnosis or of autistic children. It was my attempt to get the correct diagnosis for my child.
E was very social. He smiled at people. Some professionals saw that immediately and it was his saving grace with them. Others were unmoved and remained convinced he was autistic. He was not frightened of loud noises and did not have most of the traits I would recognise as autism (based on the information I was provided with), although some behaviours did overlap, and we have certainly had our share of aggression to work through and still do today. What I knew, from the beginning, was that the label being pressed on us did not fit the child in front of me. Getting the wrong diagnosis would have shaped every intervention and label he received. So I fought that, too, with the support of his paediatric neurologist who thought I was right.
The EHCP, and an occupational therapist who wanted to help
The EHCP process took around two years and involved multiple errors along the way. We were moving out of London by the time it finally came through. During the assessment, the occupational therapist who had to assess him asked whether he had ever had any OT on the NHS. He had not, I had been refused OT. She was visibly shocked, and she provided him with a six-week block of sessions herself. In those six weeks, at age four, she taught E how to put on his coat, and other basic little things like it. He was four years old and learning to dress himself for the first time.
We also delayed his school start by a year, which we were entitled to do, but I had to fight for that at every step, as well.
Speech therapy and the best friend who changed everything
Around the same time, something extraordinary happened. My friend Heather Osborne is a very experienced speech therapist. She was going through cancer treatment and was travelling from Bristol to London weekly for high-dose vitamin C infusions. She offered to spend two days of every week she was in London working with E, and to stay at our house on those days. I want to say clearly: most people’s best friend is not a speech therapist, and even if she were, she would not be able to spend two days of her working week, working with someone else’s child. That is what happened to us, though. Some friendships are priceless.
She provided speech therapy for half a year, at an intensity that is simply not available on the NHS or privately. Nobody knew for certain whether a child like E would respond to that much input in such a short period. He did. He engaged with her. He began to speak. To this day she is one of the closest people in his life.
The cost… and reward
None of this was cheap. Between the private physiotherapy, the allergist, the nursery workaround, the speech therapy we got in addition to what was gifted to us, and every other piece of specialist input E had, our bank accounts were drained. We did not take holidays. We did not do the things that families around us were doing. For me, every penny was worth it, because at the end of it I have a child who has no allergies, a child who can walk and jump off the coffee table and land on his feet, a child who understands two languages and speaks in grammatically correct English at the age of eight.
This summer in Bulgaria
This summer, we finally took E to Bulgaria, where I am from. For years we did not fly. An aeroplane journey was simply not viable with two young children, one of them quite severely disabled. But this year we made it, and E spent two weeks with his grandparents, who are now too old to travel to see us. Within those two weeks, he began speaking Bulgarian. He is a child who can now pick up a language by being immersed in it. That fact alone, given where we started, still stops me when I think about it.
Light at the end of the tunnel
The hole in E’s heart has closed. His physical difficulties have almost entirely resolved. He has no allergies. He is catching up to his peers. He speaks. In fact, he’s a chatterbox. He has a sense of humour. He is, more than anything else, a child with a future.
What I have learned through all of this is that many children can heal, given the right support, and that the right support is often something you have to fight for, pay for, ask for help and cobble together yourself. I have also learned that you cannot outsource this fight. Somebody has to hold the whole picture of your child, and if you’ve read this far, this person is probably you.
If you are at the beginning of that tunnel now, I want you to hear me from the other end of it. There is a way through. It is long. It is expensive… It is unfair that so much of it falls on parents. But there is light at the end of it.
Heather Osborne wrote about her own journey through cancer, and the role of integrative medicine and high-dose Vitamin C in her healing, in Cancer Cannot Shatter Hope on Elysium Lifestyle Magazine.
Sherpa Tutors has a dedicated SEN tutoring division with more than 1,300 SEN and neurodiversity teaching specialists trained to support pupils with autism, ADHD, dyslexia, anxiety and other complex learning and emotional needs. Sherpa Tutors works with students both with and without EHCPs in place.
