Life lessons from mothers with special-needs children
Being a mother isn’t always easy. If you have a special-needs child, it can be downright difficult. Lifestyle spoke with moms about the highs and lows of parenting children with unique challenges.
It’s rare for Jenny Purvey to get a hug from her son Tristen.
The 12-year-old has moderate autism.
“When your child with autism is in their own world and they come out for their moments and hug you, it is 100 times better than hearing ‘I love you’ 50 times a day’,” she said.
There was nowhere on the Island she could turn for help when he was diagnosed as a toddler.
She and her husband, Brian, later joined the charity, Bermuda Autism Support and Education. Mrs Purvey served as president for ten years.
Even with that experience, each day continues to bring challenges for the mother-of-three.
“He’s 12 and he still has tantrums in the grocery store,” she said. “People stop and stare and make comments. You know, just because I’m dealing with my son doesn’t mean I can’t hear you.”
She believes that mothering her children has made her a better person.
“I think it makes you more compassionate,” she said. “When some people complain when they hear a child screaming on a plane, we just feel sympathy for the parents.”
Tristen’s autism has also made her daughters — Harlee, 14, and Rhianna, eight — more compassionate, she thinks.
“I’ve also learnt to appreciate every accomplishment, no matter how small. Most parents couldn’t tell you the first time their child used a straw, but we can. We had to do a programme to teach him to open a Christmas present.
“You have to play the cards you are dealt. This is the reality.”
Before Traci Burgess had children she imagined a fairy tale scenario “where parenting came easy”.
Things didn’t go according to her plan.
Her daughter Olivia has systemic onset juvenile rheumatoid arthritis. It causes chronic pain and systemic lupus erythematosus, an autoimmune disease that can affect joints, internal organs and the skin.
“The experiences we’ve been through as a family over the past ten years have definitely changed me,” she said. “I have had to expand, on a personal level, at an accelerated rate to help my children evolve.”
One of her changes? She’s had to become more outspoken.
“I would not say that I am aggressive when it comes to Olivia’s medical treatment,” she said. “Rather, I am an advocate for Olivia and I am teaching her to advocate for herself.
“I do my best to research every aspect of the disease and all treatment options that are recommended. I do my best to stay alert and informed, especially when emergency situations call for immediate decisions to be made.
“I envisioned a life where parenting came easy, but life delivered a huge dose of reality early on in my marriage,” she said. “I didn’t have a clue what I was doing when our son, Sean, was born 18 years ago. Since then, I’ve been striving every day to figure out this parenting thing. Life is an eternal adventure, full of learning opportunities.”
Like most parents, she’s sometimes overwhelmed by the pressure to get it right for Olivia and her 18-year-old son Seth.
“[My pressure] is probably more intense at times due to the extraordinary situations we can sometimes face,” she said. “I personally feel a tremendous responsibility to guide both of my children through life’s challenges and help them reach their greatest potential to become the best socially responsible citizens they can be.”
Shoshana Williams has struggled to balance the needs of both her children.
Her eight-year-old son Zion weighed 1.5lbs when he was born prematurely, in 2006.
He experienced a host of medical issues as a result.
Zion was four when Mrs Williams and her husband Fitzgerald discovered his older brother, Zaire, had dyslexia.
“We figured Zaire’s attitude towards school and schoolwork was because he wanted our attention and was acting out to get it,” she said. “We decided to get a tutor for Zaire. Soon after, he was diagnosed with dyslexia.”
Then came the difficulty in trying to find the right services for Zion and, his now 12-year-old brother, Zaire.
“The biggest challenge has been trying to get the Ministry of Education to understand that our children learn differently,” Mrs Williams said.
Her experience has taught her patience and resourcefulness.
“A tea bag doesn’t know its strength until it is placed in hot water,” she said. “There is nothing I would not do to ensure that they have the best life possible. I didn’t know anyone else who was dealing with similar issues so my husband and I leaned on each other. I realise that not everyone will have a support system and I am more willing now to assist others who encounter the same struggles.”
As a special needs teacher, Laura-Jane Forbes thought she understood children with learning challenges.
When her discovered her son Caleb had a chromosome abnormality, 22q11.2 deletion, she realised she had a lot to learn.
“[The condition] 22q has some similarities to autism, which I know about because I work in the autism spectrum disorder classroom at Prospect Primary,” she said. “I’m used to challenges, but boy is it different when it’s your child.”
Children with 22q don’t look any different to other children. It’s a mixed blessing, Ms Forbes said.
“People do not ‘know’ about his challenges because they can’t see anything wrong with him so they expect him to act ‘normal’,” she said. “The biggest low for me is never knowing what is going to set him off. He does not like large social gatherings. He gets very anxious and clingy so sometimes I just avoid them.
“He gets depressed about not having friends at school because he’s ‘different’ or ‘weird’ and he has been bullied because of this. He has meltdowns and cries because he’s different and he doesn’t want to be. As a mom it’s very hard to deal with, especially because I am a very protective and passionate mother. I want to go and fight all his fights, but I can’t. It’s unfortunate that society has such a negative view on the seen, as well as the unseen challenges that people face.”
The eight-year-old is a warm and loving son, and brother to Noah, seven.
“He’s very protective of me and his brother,” she said. “He has a quirky and unique personality and he loves to dance, sing and rap. He loves animals and is a very gentle soul. His smile lights up my day and his laugh makes me laugh.”
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