“Shortly after her first birthday Z stopped using the few words that she knew. Over a short space of time she ceased to communicate at all. There was no eye contact. If someone entered the room she would look through them as if they didn’t exist. She didn’t respond to her name and had no interest in people or her environment. I remember one day a police helicopter came and hovered really low over a field near our house. You couldn’t miss it; it was huge and so loud. I tried to point it out to her and get her to look but she didn’t. It was as if she was completely switched off from everything around her.
Meal times were an issue. Z refused to touch anything that wasn’t solid and would scream if any other type of food touched her. She was very selective to the point that she would pick every tiny piece of sweetcorn out of her mixed vegetables, line them up very neatly next to her plate and then refuse to eat them.
Z’s only form of play was to pile up her toys and then take one toy at a time and create a new pile. The whole time she was doing this she would repeatedly say the phrase ‘diggy-diggy’. This would go on for hours. When we tried to initiate different games she would completely ignore us.
We tried sending Z to pre-school in the hope that mixing with children of her own age might encourage her to engage with others but it had an adverse effect on her. She was unable to cope with the sensory input and would totally shut down, screaming inconsolably before falling asleep in a corner. She also started having meltdowns at family gatherings. We avoided going to birthdays, weddings and baptisms because she just couldn’t cope with them. Z also struggled with car journeys. When we got home she would, without fail, scream for up to two hours solidly before falling asleep. We could do nothing to distract or console her.
Z appeared to have no awareness of pain. She would touch spikey plants or sharp objects and fall over with no response whatsoever. One day she cut her head quite badly but she didn’t cry or even wince. She just sat there with blood running down her face.
When we finally admitted to ourselves that she wasn’t behaving as a child her age would be expected to we were absolutely devastated. I can’t even begin to describe the fear that we felt for her future. I couldn’t look at her without bursting into tears. Our beautiful girl had withdrawn from the world and we couldn’t communicate with her.
Our GP agreed that Z’s behaviour was something that warranted further investigation. We discussed the possibility of autism and Z was referred to a paediatrician. While waiting for the appointment I spoke to a doctor at the Lorna Wing Centre for Autism who advised me that because Z was so young the NHS would be reluctant to make any specific diagnosis but stressed that early intervention would be essential.
We had to wait for several months for an appointment but when we arrived it turned out that the paediatrician had left their position unexpectedly and Z saw a locum instead. After the initial appointment we waited to receive the paediatrician’s initial report but it never arrived. After numerous phone calls and excuses ranging from the administrator being on holiday to the report being locked in a cupboard that no one had the key to we eventually filed a formal complaint. We were given yet another appointment but on the day we arrived we were told that the paediatrician was absent. Again we filed an official complaint. We were distraught and realised at that point that time was slipping away.
We began desperately searching for someone who could help our daughter. There didn’t seem to be anywhere in existence that could provide the type of early intervention that we so desperately required. After weeks of searching we noticed a new listing on a specialist website for parents of children with special needs. It was for a therapy centre that was due to open within the next few months. It was to offer multidisciplinary therapies in one setting. The centre was an hour drive from our home which made us apprehensive due to Z’s problems with car journeys but after our first initial contact we knew they could provide what we were looking for.
Z had baseline assessments on her second birthday to determine a course of action and started attending the Ark Centre the following week. She began an intensive programme of Speech and Language therapy, Occupational therapy and Behaviour therapy hat had been tailored to her specific needs. Within a short space of time we started to see a change in Z. It started with very small steps and after several months her progress on a daily basis was absolutely astounding. As a result of the hard work of Emma and her team Z began to engage with us again. She started to show an interest in what was going on around her. She could travel in a car and attend family gatherings without having a meltdown. She would happily eat a full meal. She wanted to share things with us. The list of her achievements is a long one. They’re all things that parents who have never experienced what we have would probably view as mediocre. Things that people generally take for granted in their children. To us every step meant the world. To hear her beautiful voice was the best feeling ever.
The team at the Ark provided more than just therapy for Z. They helped bolster us as parents. From the first moment that we walked into the centre Emma and her team were so welcoming. We were fully informed and involved in the planning of her therapy every step of the way. We genuinely looked forward to going there. The atmosphere was amazing. The team were all so positive with a real and obvious passion for what they do. Their enthusiasm really helped change our own mind-sets as to what Z was capable of achieving and encouraged us to embrace and cherish her for the little girl that she is rather than our focusing on what we had imagined she would be. That in itself changed everything for us. We began to be more confident about her future. Rather than feeling desperately sad for her we instead felt immensely proud of her.
Z’s progress has far exceeded the expectations that we had when she first started at the Ark. She now attends a mainstream school and is doing incredibly well. She can read, she can write, she never stops talking and most importantly to us, she has friends – and lots of them!
We truly believe that Emma and her team at the Ark helped Z to become the amazing child that she is today and will be eternally grateful for everything that they did for us as a family.”
– Reynel Bright