Jun 272020
During the pandemic our parent-carers and disabled children seem to have been forgotten by the Media.
Do you support the parent led campaign to boycott reopening schools or widening pupil numbers at this current time?
Jennifer Jones from DPAC Sheffield is a disabled Mother of a disabled son, she has spoken to other Mums, who are also parent-carers, to see how they and their children are getting on during the lockdown.
Stephanie Poules is 26 years old with a partner and two children.
When was your child diagnosed and what were his diagnoses?
My son Andrew is 6, has been officially diagnosed with ADHD (2 weeks in to lock down actually at an ‘over the phone’ the appointment) I’ve been told to treat him as though he is Autistic as she is 99% sure he has but he can’t have an assessment until the virus goes. He does not have an EHCP yet he’s due to get one once he goes back to school. He has a very detailed ‘my plan’ at school.
Is your child usually in a mainstream primary school, or a special education needs school? He is in a mainstream school for now. He is officially meant to be in y1 at the moment but because of his attention span we decided to keep him back a year so he’s in reception. The school and us, his parents, came to that decision together.
What level of support does your child require in a school setting? At school my son has his own Teaching Assistant (TA). However over two reception classes there are 6 disabled children and in total there are 11 staff over two classes. So Andrew has constantly got someone to support him. During teaching times Andrew finds it hard to concentrate so wanders from the carpet. The TAs are always on hand to do some one to one work with him. He also gets taken to sensory rooms when he’s having a meltdown. He also gets incredible emotional support when he needs it there. He needs constant supervision at all times. He also has to take his favourite Teddy that he takes everywhere with him. Or fiddle toys so he can fiddle with something at all times.
What level of support and with what activities does your child require in the home setting?
Quite a high level. I need to make sure that I have all bases covered for any emotional breakdown he may have. We have sensory toys and we do sensory activities with him for example playing with sand.
How has your child reacted to the lockdown situation?
He has not reacted well at all. If you mention school or his favourite TA he cries and says how much he misses them. He doesn’t understand why his routine has dramatically changed. He knows there’s a virus but he doesn’t understand that he can’t go and see his friends or go to a play park or even see the animals at Graves Park.(local animal park)
How do you think your child will react to proposed changes in the school setting? Andrew would not cope with them at all. He wouldn’t understand why he can’t touch or hug his TA when he needs it. As he teacher said the other day a setting like that for Andrew would take steps back rather than forward.
Do you feel comfortable with sending your child back to school in June? No I don’t at all. When should Boris Johnson treat my son as a ‘social experiment’ when he won’t even reopen parliament. Why should I put my child at risk emotionally, physically when the PM doesn’t want to risk his life? But also if the virus was clear now I also wouldn’t want to send them back because what would be the point for a few weeks to then be off the summer holidays. It’s pointless. He wouldn’t have time to adapt to changes.
During the lockdown has the child school been supportive of you as a family?
Words can not describe how wonderful his school is. They ring up at least once a week to see how he’s doing. His TA has done voice notes for Andrew and they have been really understanding and helpful over my concerns. They always have what’s best in mind for each particular child.
Do you support the parent led campaign to boycott reopening schools or widening pupil numbers at this current time?
Yes! I definitely support this campaign!
If you could deliver a direct message to the government with regard to schools what would it be?
Boris Johnson, I know you don’t really care about my son, but if you wanted to support him and his rights, then online therapies should be widely available not just for my son, but for every adult and child that needs it. They should have a lot more support at this unsettling time. A change in routine might be fine for you but for my son and many others it’s heartbreaking. Andrew doesn’t understand why he wouldn’t be able to hug his friends or teacher. You Prime Minister, need to understand that.
Muna Taha is 48, she and her partner have 7 children between them.
When was your child diagnosed and what were her diagnoses? Dinya is now 13, she was Diagnosed at 5 months old with Cerebral Palsy quadriplegia. She is a wheelchair user and has delayed motor skills and speech and language. However she has a high cognitive level.
Does your child have an EHCP? Yes
Is your child in a mainstream primary school or or a special education needs school? Special school
What level of support does your child require in a school setting? High level, personal care, close observation and contact. Etc
What level of support and with what activities does your child require in the home setting?
High level, personal care 24/7 Feeding Via tube peg and Jeg Play and sensory requires support.
How has your child reacted to the lockdown situation?
Emotional well being and mental health has been affected, due to sudden lockdown. Sudden change of routine has a knock on effect. Also due to her increased risk of catching the virus we have had to keep her in doors for quite some time, and that has been upsetting for her. Loss of connections with children from her school and missing her team has been an issue.
How do you think your child will react to proposed changes in the school setting?
We are still not aware of the types of changes. But time and consideration for children like Dinya who use body language, facial expressions and touch to communicate and reassure will Have a knock on effect and one that possibly may delay her development.
Do you feel comfortable with sending your child back to school in June?
No, but each parent, setting and circumstances are different. And we must take into consideration this matter. We must not judge parents that do.
During the lockdown, has the child school been supportive of you as a family?
What else could the school do? I Have regular Calls.
Do you support the parent led campaign to boycott reopening schools or widening pupil numbers at this current time?
Yes and No
If you could deliver a direct message to the government with regard to schools what would it be?
Parents and disabled children should have had clearer guidance. Some sort of home resources for children like Dinya needed to have been thought through. As a parent I felt as if we were second class citizens. Closer and better debate for parents. More resources Homebase was missing. Sensory and speech equipment should have been offered to parents and our children.
Would you like to share your experiences of life during lockdown with your dsabled children?
get in touch, we’d love to hear from you!
