Portrait: Michelle & Danial
A big hurdle we came across in Danial's recovery were the delays and lack of awareness on hospital wards in meeting needs for an Autistic person’s 1-on-1 care.
A little bit about Michelle & Danial
I am the mother of Danial (18 years old) an ABI survivor. On the afternoon of the 27th of November, 2021, Danial collapsed suddenly after saying his head hurt; he started vomiting from convulsions and had seizures. He was unconscious and although his eyes were closed, they were moving rapidly from side to side. I knew something was awfully wrong! The ambulance arrived and his heart was still beating so I had hope. My instincts told me that it looked like an aneurysm even though we had no family history. Once at hospital the medical staff told me that my son had a massive brain bleed (haemorrhage) due to an AVM rupture caused by a malformation of a blood vessels that was undetected from birth. They wanted me to sign the consent papers for an emergency operation to remove the blood clot and the bone flap. Danial’s odds of surviving were 50:50 due to the risks of a fatal bleed.
The year preceding Danial’s brain event, he was diagnosed with Autism (Aspergers) after a long history of bullying for being socially awkward and high functioning. Danial in the past found ways to overcome the bullying and also thrived exceptionally well as an A* student, even before knowing he had Autism he was a fighter.
Navigating the road to recovery
Considering the dire circumstances, when the neurosurgeon came into the waiting room with a bright confident look on his face saying he had removed the blood-clot successfully, I was confident that I’d get my son back. After several days in an induced medical coma, he finally woke up. Regaining his voice, it soon became evident to me that his cognitive abilities and his gifted auditory memory were intact. The speech therapist discharged him promptly, and the physiotherapists assessed that his motor skills on both sides of his body were completely unaffected. His motor functions were working fine but he was very weak and too fatigued to sit up, eat or dress independently for a while.
I became Danial’s caregiver, physiotherapist and dietician as well as a strong spirited mother to help him heal and nurse him back to health. All of this happened at the peak of Covid where access to health professionals was scarce due to long waiting lists. This made his recovery all the more exceptional and remarkable!
I remember the neurosurgeon saying my son may suffer from many neurological effects disabling him, but I responded instinctively that Autistic brains are wired differently, and so, he may not suffer the typical side effects due to having more connections in his brain compensating for tasks performed by typically parts of the brain that are compromised or damaged in Autistic individuals. Autism ran in my family and, having traits of undiagnosed high functioning Autism myself, I was confident about my statement and my son in due time proved me correct with his recovery journey.
Symptoms Danial is learning to manage
Danial has to pace himself now as he gets brain fatigue on an active day. That being said, it’s only been 5 months for the boy who started walking 2 weeks after his operation. He suffers from mood swings and aggression particularly when feeling irritable, but other days, he’s really funny and witty. His zest for life and gratefulness for God’s blessings have improved immensely. Despite his Autism, he’s more social with family now as if something got fixed inside his mind. Danial has yet to undergo AVM treatment and a Cranioplasty to replace his missing bone flap, but he has confidently committed to returning back to Kings College London University to repeat his first year again in Physics and Philosophy as an online distant learner.
Due to his Autism sensory issues, specifically touch sensitivity, he can’t wear his helmet for too long.
Until his Cranioplasty is performed Danial is isolated in the home environment more-so than others. At this time, we are waiting to get a CT scan and an Angiogram completed. We are staying optimistic and taking a humorous standpoint to keep depression and the victim mentality at bay. We enjoy a lot of comedy movie time, listening to classical music, practicing religious meditations and focusing on ”breathing” to tackle these side effects.
What’s missing from the recovery journey
Other than some vital special aids given by the hospital upon discharge, there was a lack of aftercare support. I was left paying for weekly extra fresh foods as well as special-need aids such as wireless bells for communication and safety purposes. I also had to cover the cost of soft bedroom furnishings and a lumbar cushion since we had no armchair or bed-raiser options for his room to support bed meals and physiotherapy sitting sessions for in-home rehabilitation. Due to the waiting lists for in-home physiotherapy, we made the decision to start implementing stretches and breathing techniques I’d learnt in Pilates classes to strengthen the abdominal muscles in supporting the spine. We saw Danial sitting up and walking within 2 weeks, and then climbing our home stairs after just 4 weeks. We are proud of having found a way to move forward with rehabilitation in a way that worked for us.
Working on his recovery holistically, we also used nutrition to heal his joint stiffness, sharpen his short-term & working memory, and increase his energy levels.
A big hurdle we came across in his recovery was the delays and lack of awareness on hospital wards in meeting needs for an Autistic person’s 1-on-1 care. The battles that I fought on my son’s behalf during his hospital stay; I acted as his nurse when no one was available to care for him. I was his voice to express needs when Autism made him mute in front of strangers during stressful situations. Waiting can trigger extreme anxiety in an Autistic person because routine is their grounding force. Unpredictability can cause meltdowns which are not safe, as a rise in blood pressure could have been fatal due to his already sensitive ruptured AVM, I advocated this repetitively on every shift change to the nurses on the ward at a time where the hospital’s primary focus was Covid.
Finding strength amidst challenges
I’ve juggled my life, my own pre-existing health conditions, my younger special needs son, my finances and survived a potential nervous breakdown due to going through the biggest trauma of my life! I did all I could do to get my son home and rehabilitated in an environment he was most familiar with. This is an important factor for anyone’s recovery but even more-so for an Autistic individual. I received no practical help either from my limited personal circle once back home, this was due to our small broken family background and lack of local close friends' network - typical with Autism families. It was just me, a passionate mother on autopilot 24/7, and a miracle!