Sad story of parents of children with special needs

Sad story of parents of children with special needs

Faith Njoroge’s 15-year-old son is autistic. It has been a challenging four months for mother and son since schools were shut down to stem the spread of Covid-19.

“Children with the Autism Spectrum Disorder like my son Victor Gikonyo are sticklers for routine, therefore it has been difficult to help him understand why he can’t wake up at 5am like he normally did to prepare for school,” says Ms Njoroge.

 For several days after schools were closed, Victor would still wake up early, shower and wait to leave for school, his mother’s saving grace was that his siblings were home too, which helped to convince him that indeed, his classmates were at home too.

The downside of this uninterrupted stay at home is that the teen is very frustrated, as a result, some behaviour common with autistic children such as temper tantrums, stimming and humming, which he had overcome or tried to keep under control are back in full swing.

GENERAL INTERRUPTION

Learning has also been quite a challenge for him, thanks to the general interruption that is common in homes, a factor that makes it impossible for him to concentrate, which further contributes to his frustration.

Ms Njoroge points out that caring for a child with special needs is a full time job, a job that would be shared with teachers. She now finds herself with barely any time for her other children and her business, which she runs from home.

To fulfil all these responsibilities, she finds herself allowing Victor to spend lots of time watching TV, even though she knows that this is not good for him.

The other option would be to allow him to go out and play, but his mother cannot do it, since he does not understand what social distancing is, besides, he also cannot keep a mask on.

“Autistic individuals are usually very energetic, and exercises or activities that tire them help to calm them down, nowadays, since there is little for him to do, he is cranky most of the time because he has no way to expend his energy,” says Ms Njoroge.

There have, however, been some gains. “We have taught him to do chores such as sweeping, preparing and cooking simple meals and helping to serve, sewing, and unhanging clothes and folding them,” says his mother.

TEACHER’S PERSPECTIVE

Esther Wamai, a special needs educator with 15 years’ experience, says that even though the government has an online digital learning initiative for primary and secondary school learners that are delivered through TV and radio, these lessons may not fully benefit learners with special educational needs and disabilities.

“At school, such students get individualised attention from teachers who are trained in, and are deeply familiar with their unique ways of thinking, perceiving, and processing. Also, each student has an individualised education plan that is tailored to meet their unique learning needs,” says Ms Wamai.

This means that a virtual class made up of several learners with varied learning disabilities cannot work — intellectual disabilities and autism spectrum disorder such as Victor, some of whom may be nonverbal, requires hands-on practice.

“With such students, communication is practiced through body language, therefore instructing them remotely is a daunting task because it is hard to tell whether they even know the teacher is there on the screen,” she adds.

To deal with this challenge, tutors are having to teach parents of children with special needs how to instruct them. But parents are not teachers, and especially not special needs teachers. Besides, they have their own jobs to pay attention to, therefore teaching their children becomes a daunting task.

SUPPORT SERVICES

“The nature of neurological and learning differences means that many special needs students find change and inconsistency particularly stressful, it’s harder for them to be flexible, to go with the flow, which would explain the difficulties Victor is going through,” says Ms Wamai.

Worth noting is that support services such as occupational, speech, or physical therapy are provided in many special schools, but with schools closed, they are not accessible any more. Most students have one-on-one professionals with them in the classroom, such as shadow teachers and aides, now parents have to step into all of these roles.

But this is not all, students with disabilities often use assistive technology. For instance, a student with visual impairment might use screen-reader software to have text read aloud, or a braille reader to read the text themselves, but many online platforms are not compatible with assistive technology, and even when they are, other problems frequently arise.

Courtesy of Daily Nation

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