De­lays in di­ag­no­sis con­cern Port aux Basques mother

The Gulf News (Port aux Basques) - - FRONT PAGE - ROSALYN ROY THE GULF NEWS

PORT AUX BASQUES – There is lit­tle worse for a par­ent than watch­ing their child strug­gle while await­ing a call from a med­i­cal pro­fes­sional who can ac­tu­ally help. For Jac­kee Sweet, that frus­trated and help­less feel­ing has lasted for the bet­ter part of a year.

Sweet first be­gan to sus­pect her son, Alexan­der, might be autis­tic when he was around six months old.

“He didn’t dance,” says the young mother and en­tre­pre­neur, who has other rel­a­tives on the spec­trum and is aware of some of the signs. “Ba­bies nor­mally jump and dance.”

There were other signs as well, in­clud­ing Alexan­der not mak­ing eye con­tact and hit­ting him­self in the head. When she took him to visit doc­tors, they as­sured Sweet that Alexan­der’s be­hav­iour was nor­mal for tod­dlers of his age.

Sweet kept mon­i­tor­ing Alexan­der’s growth and progress, grow­ing more con­cerned as her son con­tin­ued to fall be­hind in meet­ing typ­i­cal de­vel­op­men­tal milestones. She fi­nally put her foot down and de­manded Alexan­der be tested for autism.

Alexan­der’s doc­tor agreed with Sweet and sent him for a bat­tery of tests, in­clud­ing au­di­ol­ogy and child psy­chol­ogy. Alexan­der’s hear­ing is fine, but the psy­chol­o­gist’s re­port con­firmed what Sweet had been sus­pect­ing all along.

“They said there’s red flags for autism,” said Sweet. “Autis­tic ten­den­cies, but it’s not se­vere so I guess that’s why it is taking so long.”

Sweet took her son to Cor­ner Brook to meet with a team from the Janeway Chil­dren’s Hos­pi­tal, but since then things have slowed con­sid­er­ably. Just to get her son as­sessed by two spe­cial­ists took seven or eight months, and Sweet is tired of jump­ing through hoops to get Alexan­der the help and re­sources she feels he needs.

She said the de­lay stems from the fact that usu­ally, a child de­vel­op­ment team will re­view all data and of­fi­cially di­ag­nose a child as be­ing on the autism spec­trum.

“You can go to a pe­di­a­tri­cian,” said Sweet, “but from what I was told they don’t like do­ing it un­less it’s very se­vere.”

A re­cent tele­con­fer­ence with Alexan­der’s doc­tors pro­jected that an of­fi­cial di­ag­no­sis isn’t ex­pected for an­other 10 months. That de­lay likely means miss­ing out on help dur­ing im­por­tant early de­vel­op­ment time for Alexan­der, such as work­ing with an ap­plied be­havioural anal­y­sis (ABA) ther­a­pist.

“They would come to our home and work with him,” said Sweet. “It’s very cru­cial that he gets the ABA ther­apy be­fore he goes to school.”

Once Alexan­der reaches school age, the amount of time he would spent with that ther­a­pist is re­duced sig­nif­i­cantly.

“They preach very strongly that early in­ter­ven­tion is key for autism, and it is,” agrees Sweet. “The younger you catch it, the younger you start work­ing with them. They can learn in their own way then.”

Cop­ing skills are cru­cial in a child’s for­ma­tive years, but Sweet is find­ing it all but im­pos­si­ble to get Alexan­der ac­cess to a ther­a­pist who can prop­erly teach him. Mean­while, she is taking ad­van­tage of all the re­sources she can to help her son.

“Right now, we’re only in speech ther­apy, but ev­ery child qual­i­fies for that, not just autis­tic chil­dren.”

Although it’s only for an hour a week, Sweet has found even that lit­tle bit has helped Alexan­der greatly. She has also ar­ranged di­rect home ser­vice once a week for an hour, which is a play­time/learn­ing ses­sion for Alexan­der.

Sweet now takes com­fort in the fact that mem­bers of the Port aux Basques autis­tic com­mu­nity, such as Autism In­volves Me, have con­tacted her with of­fers of men­tor­ship and sup­port af­ter she ex­pressed her frus­tra­tion with the med­i­cal sys­tem on so­cial me­dia.

“The peace of mind alone for me ( helps),” said Sweet, truly grate­ful to those who have reached out. “This is taking such a men­tal toll on me.”

Sweet also gets help from her fam­ily, but like ev­ery par­ent of a child who needs med­i­cal in­ter­ven­tion, the wait­ing is sim­ply bru­tal.

“I know peo­ple who have waited five or six years,” says Sweet, who is de­ter­mined not to let her son en­dure a sim­i­larly long wait. “They shouldn’t have to wait that long.”

The Gulf News has reached out to Western Health for comment.

JAC­KEE SWEET

Jac­kee Sweet is con­cerned about the de­lay in hav­ing two-year-old Alexan­der di­ag­nosed with autism.

JAC­KEE SWEET

Alexan­der is show­ing signs of autism, ac­cord­ing to his mother, Jac­kee Sweet, who has other rel­a­tives on the spec­trum.

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