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Every day of the Covid-19 lockdown, Dr. Gretchen Good balanced her work and the needs of her children.
Her 12-year-old son Leo and her 9-year-old daughter Tiffany have Down syndrome and some hearing loss. Leo also has a significant visual impairment.
Their daily routines of speech therapy sessions, individualized support and supervision at school, social outings and trips to the playground, were dismantled in the days leading up to the nation’s shutdown.
“They needed support, guidance and supervision. Many disabled children, when they are in school, receive a lot of personal support and that was really difficult to translate at home because we had to work, there was more than one child and there were other things. that had to be done, ”Good said.
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“It is simply an impossible task for many parents, but especially for parents of disabled children.”
As the weeks progressed, Good, who works as a senior lecturer in rehabilitation, disability studies and public health at Massey University, kept an eye out for news of people in similar situations. Their searches often fell short.
“We were a hidden minority. People did not recognize the needs of disabled children during this confinement.
“We can’t blame anyone … no one had experienced this before,” he said. Stuff.
In order to keep everyone running a normal routine, replacing regular social outings and dates, Good stayed up late to finish work and create crafts and activities for the children to do the next day.
Good’s colleague Jane Lee, a rehabilitation teacher at Massey, was in a similar position. A single mother at home with four of her seven children, including a 6-year-old son who is on the autism spectrum, Lee went into survival mode to cope.
“We were very much in survival mode. It certainly made my head spin a bit.
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After dinner, the Good family, including 9-year-old Tiffany (pictured), would sit and play board games.
“I chose to prioritize my paid employment over any education for my children. I did my best.”
The children’s school provided learning materials, but it was simply not an option for your child to do something on his own initiative.
Without her au pair, Lee did her best to maintain a routine, something her 6-year-old daughter thrives on, do her job, and help her children as much as she could. He admitted that school work was eventually dropped from the priority list and that children spent a lot of time entertaining with iPads.
“I had no other options, there was no one around. [I] I felt a bit of mother guilt telling the school that. “
On top of that, Lee had to manage her 6-year-old son’s anxiety about what was happening with the pandemic and explain what the virus is and what the coronavirus means.
“Lockdown has reminded me how uniquely my son with autism understands and perceives the world. The rules of physical distancing are very strong in his mind, and he worries if someone gets closer than he thinks is six feet. He understands that he is not allowed to touch things when we are walking, but if he touches something in a moment of inattention, he is concerned that he has contracted the virus.
Educational material from the Ministry of Education did not reach Lee’s home; They haven’t had TV reception for years and a clerical error on their part meant they didn’t receive the hard packets. If they had received the packages, he believes that his family’s experience during the confinement would have been much more positive.
“Not having the resources available … it took us all by surprise,” said Lee, who also works as a social worker.
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Jane Lee had to prioritize her paid work during the Covid-19 national shutdown and admitted that children relied on iPads to learn.
Good, who was concerned about her children’s regression, received the educational packages, but they were not appropriate for her needs.
“It was a real disappointment. We were so eager to get the learning packages, and then we got them, and they were geared toward her age, not her abilities.
“What might work for other kids didn’t work for ours – they couldn’t participate in Zoom or participate in learning on television because it wasn’t appropriate for them and it didn’t meet their needs.”
After contacting the Ministry of Education, they received replacement packages designed for a younger age group, but the material was not adapted to their needs.
Throughout the national shutdown, the Ministry of Education sent more than 6,400 learning support packages and more than 3,400 sensory learning packages to students who required additional learning support.
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Leo, 12, loves to sit in school and work hard, said his mother, Dr. Gretchen Good.
Katrina Casey, the sector’s undersecretary for empowerment and support, explained that the ministry discussed the need for additional resources with the Education Network for the Blind and Low Vision, but the packages were deemed appropriate. They also worked with the New Zealand Special Education Directors Association to develop appropriate content for students with special education needs.
“We were unable to consult with families about what they would like to see included in the packages due to the tight deadline to have them ready in time for the start of the second quarter,” he said.
Looking ahead, that’s an area Lee wanted to see progress.
“[Government agencies should] start having those conversations with families now. “
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Leo, 12, and Tiffany, 9, went for a walk every day during the level 4 lockdown.
Lee and Good are co-authors of an article detailing the struggles they faced in confinement as parents of children with disabilities and are working on another that focuses on solutions for families. They hope to make some noise in this space to promote the need for additional learning support for families.
The Ministry of Education is evaluating the effectiveness of its hard packs and other educational resources distributed during the pandemic. Casey explained that the evaluation will inform their future support, if needed.
Although the national shutdown ended months ago, life has not completely returned to normal at the Good or Lee homes.
“I’m still in recovery mode from the last crash,” Lee said.
“It is urgent for me to think about what the plan looks like [if this happens again]. “
Warwick Smith / Stuff
Dr. Gretchen Good co-wrote an article with Jane Lee detailing her experience raising children with disabilities in confinement.
New Zealand has marked several days with no evidence of community transmission and people enjoy Alert Level 1 freedoms, but the struggles and concerns remain for the families of children with disabilities.
“Our children have been sent home from school whenever there is a bad smelling nose and they have chronically runny noses, so my husband and I end up packing and bringing our computers home from work again for three weeks because the children were sent home, “Well said.
“It really is not over for families with children with special needs and high-risk health conditions.”
