Between hope and practicality

Barbara
Barbara Dean-Simmons
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Mother shares her story of living with autism

The girl has a big personality.

Patricia Carpenter and her children, Daniel and Eva.

Eva Rose, aged 10, has brown eyes the colour of melted chocolate, a beautiful smile, a keen interest in Egyptian history, a vocabulary to rival any adult, and a sharp wit.

She’s also a bit of a fashion diva — sequins are her trademark — and her current favourite accessory is her “Neapolitan” hat in shades of grey, white and pink.

Her brother Daniel is younger by four years. He shares the same chocolate brown eyes, and also has a favourite thing — these days it’s the flags of the world that hold his interest.

In many ways they are exact opposites.

He is as quiet as she is chatty; as shy as she is extroverted.

They do share something very much in common, however.

They are both autistic.

Eva was four years old when she was diagnosed with autism.

The diagnosis, while anticipated, was still crushing, for her mother, Patricia Carpenter.

“I had had concerns (prior to the diagnosis) but suppressed them,” she says. “There was denial for awhile because she was fairly smart.”

Still, there were the mannerisms — meltdowns, tantrums and fixation on particular things — that were signaling that Eva was different than other children.

Eva was sent to see a specialist at the Janeway and 20 minutes into the assessment the doctor confirmed the diagnosis.

 “I allowed myself about a day to fall apart,” says Patricia, who was pregnant with Daniel at the time.

Then practicality set in and the focus was on seeking out supports and services to help Eva.

Within short order, she says, she had a home therapist in place to work with her daughter, and was pleased to see Eva making progress almost from the start.

Initially, Daniel didn’t exhibit any autistic traits when he was a baby. He was developing normally and was even starting to speak.

Then, at the age of two and half, “he lost his words,” recalls his mother, “and began the ritualistic behaviours (common in autistic children).”

It was a double-whammy, but Patricia tried not to dwell.

“I felt it was a bit unfair,” she says, matter-of-factly. “But then I had the idea that with therapy he would progress like his sister.”

The path for Daniel hasn’t been the same, however.

He is not as verbal as his sister and it’s difficult to understand some of his pronunciation.

“He has the ability to speak, he just doesn’t seem to have the desire,” says Patricia.

He seems to be happy with the way things are, she added. “He has his own way of letting me know what he wants.”

Daniel appears to be introspective, content with his own thoughts.

He did, however, delight in showing off his musical ability. There was a smile, and eye contact, as he interrupted the interview to sing, “Morningtown Ride.”

Autism, says Patricia, presents itself in so many different ways that it really is a disability unique to each child.

Her children are an example of the broad spectrum of nuances, personalities and behaviours on the autism scale.

Patricia says she is fortunate, to be living in a larger town closer to some of the services available.

And at their school in Shoal Harbour, a privately-run after-school Little People’s Workshop each day, provides Daniel and Eva extra time to socialize with other children and receive more one-on-one therapy.

She is fortunate to have a decent paying job as a Crown Prosecutor, meaning some of the costs — like travel to medical appointments — is not the burden it might be for others.­

Her legal knowledge has also enabled her to be a strong advocate for her children.

She ponders how, for lower-income families living in smaller communities, the diagnosis of autism must mean a greater stress with the added financial worries and fewer local services.

She believes families of children with autism deserve to have an advocate – someone they can turn to when they are struggling to find therapy for their child, or extra assistance within the education system and to help them through what can be a daunting task of fighting for services.

For those facing the prospect of having an autistic child, Patricia has some basic advice.

While denial is the initial reaction for any parent, she says you have to learn to accept and then start looking for help.

“The faster you can get therapy for your child, the better.”

And don’t be afraid to ask family members and friends for assistance, as well.

“I had to learn to swallow my pride,” says Patricia, “and reach out to others.”

Her support structure currently includes paid help, as well as her sister and the children’s father (Patricia’s ex-husband).

“We have a very good relationship,” she says. Her work often takes her away from Clarenville and when his work schedule permits he comes to Clarenville to spend time with Eva and Daniel.

“He’s very supportive of my need to have a break every now and then,” she says.

“And I do have a lot of family who are there if needed,” she added.

This past year was an especially difficult one for Patricia and her family, however. Her mother, Rowena, died suddenly. She had been a key support for Patricia, Eva and Daniel, filling in when and as needed.

Patricia says the loss of her mother didn’t really hit her until weeks after the sudden death.

She had been so busy with the practicalities of funeral arrangements and then assisting her father in the aftermath, that she was running on autopilot.

In November, she took a break from work.

“You think you’re so strong, able to handle anything. But there’s only so much anyone can handle,” she says.

She needed her own emotional healing and the support of a counselor to get her through an extremely difficult time.

“I just wanted to curl up into a ball and sleep,” she says of that time.

“And I’m not afraid to say that I needed professional help,” she says, adding no one should be afraid to seek out that kind of help if it’s needed.

Acceptance is the key, she says — referring not only to autism but also to the fact that sometimes you just can’t find your inner strength every day.

Ultimately, though, when it comes to the possibility of your child having autism, she says it’s important to move past denial and seek help as soon as possible.

“The important thing is, if you have any concerns about your child, contact Eastern Health.”

She stresses that if autism is the underlying cause, it’s important to have a medical diagnosis for confirmation and then go looking for the supports and therapies available to assist the child.

When Patricia ponders the future, she is optimistic that Eva may be able to do the things — college, work — that any other person would be able to do.

With her social skills, her engaging personality and her obvious intelligence, however, Eva’s future has potential.

The hope is that Daniel, with time, might also be able to interact better with people.

“I’m optimistic, but I’m not starry-eyed, either,” says his mother. “Unless Daniel shows an improvement, be might not hold down a job, or have a family.

“I think he’s always going to be with me.”

Still, Patricia doesn’t try to dwell so much on what may lie years into the future.

And, she says emphatically, “I don’t want pity.

“This is what it is, pity won’t change it.”

What she does hope for, however, is more public understanding of autism and the recognition that families who are dealing with autism need acceptance and assistance.

The ultimate hope is that Eva and Daniel, with the continued support of family, the community and the education system, will continue to make progress, that their abilities will improve as they grow into teenagers and adults.

Beyond that, her basic wish is what any mother would want for her children — to be healthy and happy.

Based on Eva Rose’s wide smile and Daniel’s subtle grin, it appears that goal, at least, has been conquered.

 

To find out more about autism or the resources available, go to www.autism.nf.net

 

bsimmons@thepacket.ca

Organizations: Janeway

Geographic location: Clarenville, Shoal Harbour

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Recent comments

  • Roxanne Gifford
    May 10, 2014 - 17:36

    I don't have a child with autism but I loved this article! Thank you:)

  • beverley brace
    May 09, 2014 - 17:41

    What a great article and family . I am witness to of the amazing growth and development and happiness of these two children An outstanding mother who shares honestly her childs gifts and struggles.I agree whole heatedly that advocacy and public awareness of autism early diagnosis and knowing available supports is key to successful integration and social development.Inspirational message for parents of young children bev Brace ,

  • beverley brace
    May 09, 2014 - 17:38

    What a great article and family . I am witness to of the amazing growth and development and happiness of these two children An outstanding mother who shares honestly her childs gifts and struggles.I agree whole heatedly that advocacy and public awareness of autism early diagnosis and knowing available supports is key to successful integration and social development.Inspirational message for parents of young children bev Brace ,