Noah, 11, was diagnosed with severe autism just before turning two. At the time, his mother, Lyndsey Rogers, had just qualified as a nurse.
“It was a sudden regression in development. My son stopped reacting, he stopped looking directly into my eyes, he stopped babbling and singing to songs,” a tearful Lyndsey says.
From then on, it was a constant struggle for both mother and son. Noah needed attention 24/7. His mother had to work. Her marriage crumbled, and “I was very much on my own without any support”.
Lyndsey hoped things would take a turn for the better. But as her son grew up, she says, he reached a plateau and did not seem to improve.
“It was difficult to come to terms with reality. Life taught me to dampen my hopes. I decided to start focusing on the now rather than on what my son would not achieve. Still very young, Noah did not understand what was going on and we were both physically and mentally exhausted. We both needed a timeout!”
Noah spent most of his first kindergarten year in mainstream education at home, “as there was no learning support educator (LSE) available in Pembroke at the beginning of the year. After asking and pushing for a LSE, my son was assigned one in the last two months”.
Lyndsey feels very strongly about these gaps in the educational system for children with disability and says they need to be addressed.
“If a LSE is on sick or vacation leave, our children have to miss a day of school. There is also a lack of incentives to motivate LSEs, who give an excellent service to our children, as well as much-needed resources, such as in-house occupational and speech therapists.”
As a result, Noah lagged behind both academically and developmentally. “The same LSE helped him on a one-to-one basis the following year, but he would throw tantrums and wouldn’t want to stay. There wasn’t a room where he could spend a few hours on his own for a burst of energy. The only option was the playground, which was not available on rainy days, so he spent a lot of time in the school corridor.”
On the other hand, at the San Miguel Special School in Pembroke, which caters for children with varying disabilities, Noah seemed to settle down.
“The school’s head and assistant head were themselves parents of children with disability, so they fought for the resources needed. But the odds were always against them. Unlike in mainstream education, here Noah had the opportunity of being in the company of children on the same spectrum. The school also focused on giving our children basic life skills, which was great.”
But Lyndsey’s struggle to juggle work while ensuring care for her son continued. “I was completely alone, and there were times when I could not keep my eyes open after a night shift in hospital. Desperation and exhaustion kicked in. My mother took care of my son while I was at work, but the hours were never enough. There was no service and no one to turn to… until I was saved by HILA (Home to Independence and Limitless Abilities) around four years ago.”
HILA manages and runs Casa Apap Bologna in Mosta, a respite home for children, adoloscents and adults with disability which offers services funded through Aġenzija Sapport.
“After school at the Guardian Angel in Ħamrun, Noah comes home and we spend time together. I take him to music therapy or swimming, or any other extra-curricular activity he enjoys, after which I leave him at Casa Apap Bologna for the night. He loves the environment and is very happy. The dedicated team change his nappy, feed him and spend time with him,” says Lyndsey, who now works night shifts, so she can be with her son when he returns home after school.
Mary Grace and Robert Balzan have three girls – Cheryl, 27, Maria, 24, and Michela, 21, who was diagnosed with autism and global developmental delay when she was about eight months old.
“Our life has always been full of limitations, especially because there weren’t many places that catered specifically for her disability. Despite receiving good care in the special schools Michela attended, there were times when she felt unhappy, frustrated and unsettled in the wrong environment,” says her mother, who gives her husband a hand with the family business.
Michela’s first school experience was at San Miguel in Pembroke. “My daughter, who did not walk at the time, spent a lovely time here, as the curriculum was quite flexible and staff did not adopt a by-the-book approach with the children, which worked well for Michela.”
Michela walked at the age of 10. Her mother describes the moment as “the most beautiful Christmas present ever”. The family were gathered around with the grandparents when Michela took her very first steps. “I will never forget that day,” her mother recounts.
“Once our daughter discovered she could climb up and down the stairs at home, we could not afford to let her out of our sight. Constantly tired, we felt burnt out, swamped by feelings of helplessness in keeping up with her incessant demands. She also started to experience epileptic fits and bouts of restlessness.”
The environment at the Guardian Angel in Ħamrun, a special school that caters for children with severe learning difficulties, once again proved inappropriate.
It’s an excellent special school, her mother says, but “it did not cater for Michela’s intellectual disability. My daughter is unable to follow a timetable. She needs to run around, feel free and burn off her energy, so she did not belong here. She threw tantrums every day and the school often rang us up because they could not understand her needs”.
Michela then moved to the Young Adults Education Resource Centre in Wardija, where students can stay on until the age of 22. “Once again, both the school’s environment and approach were unsuitable. Michela does not use speech, she needs to be motivated and does not have the patience to sit on a chair in a resource room for more than two minutes. Placing adolescents with disability under one cap is not ideal.”
Three years ago, when Michela’s mother broke her leg and could not keep up with her daughter, the Balzans got to know about HILA.
“Sending her to Casa Apap Bologna has changed our lives. Settling in nicely after a couple of visits, Michela loves this place and runs in happily each time we drop her off. This gives us peace of mind, knowing that she is safe and happy with a team of people who give her all the individual attention she needs. And we have done away with our guilt feelings. We can finally breathe.”
The mothers’ message to parents who might be accompanied by guilt feelings along their difficult path is: “It’s alright to enjoy life, even if this might last for only a short while. Consider this little pleasure as your reward. We, parents of special children, are not machines. We cannot do it on our own. We need constant support and rest, in order to have the energy to keep going and focus on giving our children the very best of ourselves.”