Little Téa was born with a hip problem that kept her in a sling for the first five months of her life and a hard-plastic brace for the following three months. Doctors told mom Ariana Jalfen and dad Al Bitton that the normal infant development milestones might be delayed, but not to worry.
They were patient, but by the time Téa was 16 months old, Jalfen knew something was terribly wrong. Téa would smile at her sisters, Naya, now 7 and Sienna, now 5, but she did not respond to her name. She rocked. And she demonstrated repetitive behaviour.
And so the Kirkland family’s excruciating odyssey to nail down a diagnosis and get Téa help began.
Téa will be 3 years old in March. They know she has autism spectrum disorder, but because of the drawn-out assessment process and shifting diagnoses, they still don’t know where exactly Téa sits in the spectrum.
Jalfen, like so many other parents she’s met, is exhausted by the extended assessment process and she wants to do something to help other parents navigate the system in a more efficient way.
So she’s applied to the Aviva Community Fund for a grant to establish what she’s named The Warrior Fund: Sparx for Autism Awareness and Fund Granting.
The foundation would organize events designed to shorten the assessment process and raise awareness in schools so that students can better communicate with and understand fellow students with autism spectrum disorder, and it would raise funds to help parents defray the dizzying cost of necessary behavioural therapies.
Jalfen pays $2,500 a month for Téa’s applied behavioural therapies. It would cost $6,000, but Téa attends the non-profit Gold Centre which receives funding from the Miriam Foundation to subsidize tuition costs.
In this phase of the Aviva Community Fund pitch process, the public goes online and votes for a favourite pitch. Based on the public vote, the top 10 pitches in each of three categories move on to the semifinals.
Jalfen posted her pitch the night of Nov. 10. As of Wednesday morning (Nov. 20), she had received 1162 votes. Public voting ends on Nov. 25.
People can vote multiple times, but not more than once a day. A panel of judges made up of public figures from across Canada ultimately decide which pitches will receive funding.
Jalfen’s idea for shortening the assessment time is novel.
“I want to work with doctors, therapists and other health professionals to organize what I call assessment-o-thons,” Jalfen said. “They have marathons and dance-a-thons. Why not an assement-a-thon?”
Jalfen also calls her project the Red Boot Warrior project and runs a Facebook page under that name (www.facebook.com/redbootwarrior).
The red boots she refers to were a prize she won for a blog post (she blogs at http://weewiggles.wordpress.com).
The boots were too large, but every time she clomped around in them she felt strong. They became her turn-to item when energy flagged.
“I told my dad once that I was having trouble keeping up the strength, mothering all three girls equally, while working (www.ilovekiddeals.ca) and maintaining a romantic relationship with my husband,” she said. “He told me to go put on the boots. It worked.”
Jalfen is determined to establish the foundation because she knows how important it is for worried parents to get the help they need as early as possible.
“If we get these children the help they need early enough in their lives, they grow up to be contributing members of society,” Jalfen said.
To read Jalfen’s pitch and vote, visit www.avivacommunityfund.org/ideas/acf19113
kgreenaway@montrealgazette.com