Writer’s Note: This is a special feature in honour of my nephew, Matthew, who is autistic.
By Hadassah Deleveaux (née Hall)
This is Matthew. He is my nephew. He is autistic.
One person might describe him as different. Another, might say he’s special. Matthew though, is simply unique.
For me, he is “Sweet boy.” For his cousin Nicole, he is “Handsome.” For his other cousin, Shelton, he’s “Ma-CHEW!” For his mom, Matthew is “Poonkins.”
As the world pauses to take note of Autism Awareness Month, the families of those on the spectrum deal with it daily…the quirks of each of these gifted people. Here are a few of Matthew’s:
Matthew loves water: He turns on the faucet in the bathroom or kitchen and either plays in it or scoops it up in his hands and drinks it.
Matthew loves music: His favourite songs at the moment are Alicia Key’s ‘Girl on Fire‘ and Kirk Franklin’s, ‘Smile‘ (He knows how to find them on YouTube).
Matthew has a hearty appetite: He eats slices and slices of bread. He loves bread. He also loves fries and especially nuggets (During a party in pre-school, while everyone else had Happy Meals, Matthew had nuggets).
Matthew loves the outdoors. A drive in a vehicle is a joy for him.
Matthew wouldn’t have a conversation with you, but he would repeat a commercial verbatim.
Matthew repeatedly plays the intro of Law and Order on YouTube – a show his mom often watched while he was in the womb and after his birth. She went on to nickname him, ‘The Law and Order Baby.’
Matthew rocks and repeatedly makes humming sounds.
That’s Matthew and we love him.
It was October 29th, 2010 when Matthew made his entrance into our lives. In the beginning he gave my brother Michael and his wife, Nina, several scares.
Nina had an unplanned c-section, as Matthew “failed to progress.” He was discharged from hospital two days later, but while at home on that day, he began making shrieking noises. Those noises were abnormal. They weren’t the usual cries of a baby.
Within hours of his release from hospital, Matthew was back. In his parents’ presence, the doctor began pulling on Matthew’s toes and shaking his arms, but he was not responding. No cries. In that moment, the doctor – with Matthew in hand – dashed down the hall, leaving his parents in shock. Chaos broke out as other doctors bolted in the same direction.
Meanwhile, Nina collapsed on the floor in despair. She was crying. She was nervous. She had questions. She was afraid she would lose her son. This was her first child. Her only child. What could be wrong?
Michael and Nina later learned that Matthew had stopped breathing.
And while admitted to hospital, he had stopped breathing a second time.
But Matthew was a fighter. He still is a fighter.
I remember the night when he was transported to Miami Children’s Hospital (now called the Nicklaus Children’s Hospital) via air ambulance. My mother and I solemnly walked behind Michael, Nina, Nina’s mother and the nurse from the children’s hospital. As we walked the halls to the waiting ambulance – which would head to the airport for this emergency flight – it was as though everyone we passed was clearing the way for the prince. There was something special about those moments. Matthew seemed to have everyone’s attention. Everyone was fixated on this tiny baby being wheeled through the hallway. And as I was praying silently, I believe others watching may have said silent prayers as well.
Nina recalls that day, saying, “Mentally, I wasn’t there. I do remember that day as clear as day though. My mom went with him on the flight, but because I didn’t have my visa, I couldn’t go right then. I was on the flight the next day.”
Matthew remained hospitalized in the United States for one month.
Nina has learned a lot in the past 10-and-a-half years. Initially, she had heard about autism, but didn’t know much. But when Matthew was two, Nina realized something was awry. She and Matthew were at her friend’s house and she called Matthew by name; however, he was not responding to his name. After Nina mentioned to her friend that Matthew was delayed with walking and was non-verbal, her friend suggested that perhaps he was autistic. That reality was eventually officially diagnosed.
“The first few years were difficult. Every November/December, he would get sick and not eat. His sugar would drop and that would scare me. He was hospitalized two more times,” the mother of one recalled.
Today, Matthew is a happy, for the most part healthy young boy. But there are those times when he has meltdowns.
“That affects me hard. It’s rough. Being non-verbal, you don’t know if he’s in pain, having a tantrum or a meltdown. He can’t say, ‘Mummy, I have a tummy ache’ or ‘My head hurts.’ It’s depressing. When he’s crying, I’m crying. I sometimes take him on a drive and if he calms down right away, I know it’s a tantrum,” admitted Nina.
Questioned as to advice to someone with a child on the autism spectrum, Nina immediately said patience is necessary.
“You have to accept that the child is on the spectrum. Some parents are in denial. I have a cousin who was non-verbal for a while and today he is normal, but when Matthew was not responding to his name, I accepted something was wrong, so you must get as much information as possible, like from REACH (Resources and Education for Autism and related Challenges) and tell family and friends what the situation is,” she added.
Noting that some autistic children are high functioning, there are those like Matthew who take a while to do certain things. For example, it was a while before he learned to feed himself and go to the restroom on his own. He also needs occupational and speech therapy. Interestingly though, Matthew sometimes has surprises up his sleeves. He once told his mother, “I ga spank you!” He also told her, “Go sit down!” And then there was that time when they were at her family’s reunion on Blue Lagoon Island and as they walked deeper into the water, Matthew shouted, “I can’t do it!”
Looking to the future, Nina said she simply wants the best for Matthew. She watches videos and tv shows which give her hope. She said she also prays about the matter.
“I will try my best for him to get what he needs. I’m also waiting to see what his gift is. When I find out, I’m gonna run with it. God didn’t let this child stop breathing twice without him being here on this earth for a reason,” she concluded.