Al­tered at­ti­tudes canopen­worlds

The Jewish Chronicle - - LIFE -

of­fice sev­eral times,” he said. “Our den­tist sched­uled us for the end of the day, when there were no other pa­tients, and set goals with us. The goal of the first ses­sion was to have my daugh­ter sit in the chair. The sec­ond ses­sion was so she could re­hearse the steps in­volved in treat­ment with­out ac­tu­ally do­ing them. The den­tist gave all of his equip­ment spe­cial names for her. Through­out this process, we used a large mir­ror so she could see ex­actly what was be­ing done, and to en­sure that there were no sur­prises.”

Like many par­ents, Marnin and Margo had be­come am­a­teur autism re­searchers them­selves, de­vot­ing Mys­tery: We don’t know why autis­tic chil­dren are so dis­tant hours of their pre­cious alone time each week to por­ing over the lat­est stud­ies and eval­u­at­ing ther­a­pies that might be of help to Leah. I learned that it was not un­usual for par­ents, whose fi­nances were al­ready strained by the cost of be­havioural in­ter­ven­tions, to have to walk away from ca­reers they loved to ef­fec­tively be­come case man­agers for their chil­dren, field­ing teams of be­havioural ther­a­pists while go­ing into bat­tle with school-boards, re­gional cen­tres, and in­sur­ance com­pa­nies to en­sure that their chil­dren got the ed­u­ca­tion and ser­vices they de­served.

One of the hard­est things about hav­ing a child with autism, par­ents told me, was strug­gling to main­tain hope in the face of dire pre­dic­tions from doc­tors, school ad­min­is­tra­tors, and other pro­fes­sion­als who were sup­posed to be on their side. When Leah was di­ag­nosed, an autism spe­cial­ist told Marnin: “There is very lit­tle dif­fer­ence be­tween your daugh­ter and an an­i­mal. We have no idea what she will be able to do in the fu­ture.” (At 25, Leah is a bright, en­gag­ing, and af­fec­tion­ate young woman who re­mem­bers the names of ev­ery teacher and fel­low stu­dent in her classes — go­ing all the way back to pre-school — and sings along with

A trip on a plane can take months to plan

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