By Lara Pickford-Gordon
Saira Joseph-La Foucade offered up her unborn child to be a priest after the first ultrasound revealed she was having a boy. Her husband Miguel envisioned football games together and his son going on to become a professional footballer.
It was a difficult labour lasting over two days, but this is how she felt when he was born January 1, 2008. “I could not hold him until two days after he was born, so it was an overwhelming feeling of relief, love, joy, happiness. I started singing a hymn that I kept repeating during my pregnancy and he immediately looked at me like ‘Hey, it’s you. Where were you all this time? You are my mummy.’ He spent eight days in ICU, and I spent seven days being treated myself after the complicated labour.”
It was in the months that followed that Matheaus began showing signs that something was not right.
When Saira returned to working after maternity leave, he would cry incessantly. This was construed as his longing for her. The couple noticed other things.
“He would cry every time we left home, at times throw up in the car seat, not sleep through the night. He would get up gasping for air and, many times in the day, he would stop breathing. After several doctor visits, we decided to see an Ear, Nose and Throat specialist,” she said.
Two surgeries were done to correct his ears which were not properly formed during birth. However, Matheaus was still not talking or responding to sound. Tests confirmed that he could hear, so a speech therapist was consulted, who recommended the children’s development clinic at the Eric Williams Medical Sciences Complex, Mt Hope.
“This was the first time I realised it was more than a physical ailment. By this time, he was 18 months.” Her mother, a remedial teacher, also shared her concern that Matheaus was regressing in behaviour, speech, and possibly had a brain disorder.
At two and a half years, Matheaus was diagnosed as being on the autism spectrum. The news did not bring denial; Saira said she felt happy that his condition was identified.
She commented, “I was not going crazy, this was something official and with courses of action to take. The diagnosis of autism also helped me know I was not alone. I felt like we finally belonged somewhere.”
Miguel, she continued, eventually came to terms with the news and is her “biggest ally, supporting our family as I resigned from work and began trying to make life better for Matheaus and our family.”
‘Big sister’ 12-year-old Laila is also a source of support.
Adjusting to life
The La Foucades tried various therapies— speech, developmental, behavioural, occupational, aqua, and getting him into school. Aqua therapy proved to be of value and continued until Covid-19.
Saira said a home therapist helped bring some peace to the home with adjustments to make the dwelling space comfortable for Matheaus and other family members. “She really helped us develop a routine for him. With medication, he settled down and was able to start attending a special education school. By this time, he was five years old.”
There have been many challenges and adjustments over the years but, through it all, she did not question God. He gave her Matheaus for a purpose.
Saira said: “…and with the ministry of Bethesda, it just justifies his birth almost daily. I also believe God gave Matheaus to me, as his mother, for a purpose. My experience multitasking in a global company gave me the training to do all the things I do today without losing my focus. My faith is what keeps me going for it is only with God that we are managing all the difficulties which at times seems impossible.”
Matheaus cannot express himself as other children but does show love. Saira said on mornings he comes to wake her, kisses her then goes on his personal computer (PC).
“If he becomes engrossed in the PC before I reach him, he would stop and turn for his kiss when he sees me, and if I have to get dressed to go somewhere, he loves seeing me put on makeup etc. When I do my hair, he would touch it as if to say, ‘Yes mummy, I see you and you look great’.”
He uses non-verbal communication—pointing, pushing, and leading to what he wants or when he feels frustrated. He always looks to his parents for help.
“I realise he feels like we can help him overcome his challenges. Of course, he looks to me first and mainly, but he really loves his daddy as well and misses him tremendously when he goes offshore.”
Matheaus still has meltdowns in which he bangs his drums, his desk, walls, a door. He hurls himself at walls and doors. Saira said fortunately, neighbours are understanding.
She explained he used these methods to calm himself along with flapping his hands, running around etc. Using his computer helps keep him calm, and she said the family is blessed to have a wonderful babysitter. His school teacher lives a few streets away.
Matheaus has to be on daily medication to be manageable. “It is disappointing [but] he has to be medicated; he needs it.”
What is love?
Saira said, “Love endures all; love is patience; and love is the key to understanding the challenges we face in life. Scripture says we are to love because He loved us first. Well, Matheaus loved us first and sometimes I think more than we can possibly love him, so I know it is only with God’s love we are able to cope with this journey of life. Without love, we would not have to patience to endure.”
The Bethesda Ministry was inspired by Saira Joseph-La Foucade’s experience feeling lost and lonely and not attending Mass due to the needs of her son. The Mass was a source of strength, motivation, encouragement, and comfort.
She knew there were other families who were missing out on attending Mass because they had children, family members with special needs.
In 2013, she visited then Archbishop Joseph Harris to discuss having sensory-friendly Masses so families like hers could attend.
Read more about the ministry promoting inclusion of persons with disabilities at their Facebook Page, BethesdaTT.