Parents grapple with support to children with special needs

Monday September 14 2020

school

 A teacher from an autistim school teaching a child during the lockdown. Many parents with children with special needs have been struggling to cope due to the prolonged. PHOTO | Cyril Ndegeya  

ARAFAT MUGABO
By ARAFAT MUGABO
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Parents with children with special needs are struggling to cope due to the prolonged closure of schools due to the ongoing pandemic.

While schools had been scheduled to open in September, a recent spike in Covid-19 infections forced the government to extend the closure to an unknown date.

Scovia Muteteri’s 14-year-old son is autistic. It has been a challenging six months since schools were closed to stem the spread of Covid-19.

“I was told by his teacher that children with the Autism Spectrum Disorder like my son are fanatic for routine, therefore it has been difficult to help him understand why he can’t wake up at 6 am like he used to do before the closures of schools when he had to prepare for school,” says Ms Muteteri.

She said that at school, his son has a huge support team including a vision therapist, speech therapist, occupational therapist, learning behavioral therapist and various teachers in the classroom, adaptive special education and special subjects.

For several months after schools were closed, her son would still wake up early, shower and wait to leave for school, but because his siblings were home too, it helped to convince him that no classes were going on.

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Ms Muteteri said the prolonged closure of schools has made life extremely difficult not only for her as a caregiver but her son’s condition is deteriorating.

The school's closure that led to uninterrupted stay at home has deteriorated the teen's condition and now he is very frustrated, as a result, his autistic behaviours have been re-activated such as humming, temper tantrums.

Ms Muteteri says learning has also been quite a challenge for her son as the home environment is not conducive as there is a lot of interruption which makes it difficult for him to stay focused.

Full time job

She said caring for a child with special needs is a full-time job, a job that they were used to share with teachers. She now finds herself with barely any time for her other children and business, which she runs five kilometres away from home.

“More disturbing is that because I am scared he could endanger his siblings I have been not going to work for four months and the situation at home is bad since I’m the mother and father at home,” said Ms Muteteri.

She said that last week her son’s temper rose and found him about to stab his eight-year-old sister just because of a small misunderstanding. This is why she fears to leave him at home with his siblings.

“My husband in mid-April disappeared from home after two weeks of losing his job because the bar he used to work for had closed as the government intensified measures to prevent the spread of coronavirus,” she added.

To fulfil other responsibilities and home chores, Ms Muteteri has found herself allowing him to spend lots of time watching TV, even though she knows that this is not good for him.

Ms Muteteri said the autistic individuals are usually very energetic, and exercises or activities that tire them which help to calm them down.

nowadays, since it is little for him to do, he usually wants to spend his energy on his siblings which is dangerous since he can even kill them.

It is not only Ms Muteteri going through difficult caring for his special need child but other parents whose children are disabled told Rwanda Today that they are struggling to cater for them.

Clair Murebwayire, a resident of Kicukiro with a child with multiple disabilities says children with multiple disabilities needs are unique treatment are very challenging.

“I have two disabled children one with multiple disabilities and the other with visual impairments and they all cannot easily communicate their needs. This has made it difficult to freely move their body to access and engage their world,” said Ms Murebwayire.

“I am at home, struggling to look after them, often while juggling between work and care for siblings, with no idea how long the national experiment in mass home-schooling will last,” said Ms Murebwayire.

“Since the closure of the schools we have been requesting to get professional support from National Council of People with Disabilities (NCPD) to ensure our children with multiple disabilities remain active participant in all aspects of their lives and makes meaningful progress toward valued life outcomes,” says Ms Murebwayire.

“Juggling between work and caring for disabled children require one to be proactive and it’s hard to be proactive when you are in survival mode,” she added.

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