‘It has made us feel like we are not alone’ - lockdown help for children with special needs

Aria Beales. Picture: Jennifer Madden

Aria Beales. Picture: Jennifer Madden - Credit: Jennifer Madden

For parents of children with special educational needs, coronavirus lockdown has presented particular challenges - but a virtual helping hand has given them much-needed support.

Aaron Bor-Szlopovszky. Picture: Linda Bor-Szlopovszky

Aaron Bor-Szlopovszky. Picture: Linda Bor-Szlopovszky - Credit: Linda Bor-Szlopovszky

The lockdown has meant the usual home visits to more than 430 pre-school children with special needs have not been possible, but that has not stopped the youngsters and their parents getting crucial support.

And parents say Norfolk County Council’s Portage service, part of the authority’s learning and inclusion service, has been a lifeline during the difficult times.

Professionals have been teaching children aged from birth to five their colours by video call sessions online, encouraging them to create art using rainbows.

Jennifer Madden, mother of Aria, three, from Sutton, near Stalham, said of the free service: “It has provided us with someone to talk to and to discuss any difficulties we may be having. It has made us feel like we are not alone and there is always someone there who we can turn to if needed for the extra support.

Aaron Bor-Szlopovszky. Picture: Linda Bor-Szlopovszky

Aaron Bor-Szlopovszky. Picture: Linda Bor-Szlopovszky - Credit: Linda Bor-Szlopovszky


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“They have helped us with tasks that have needed doing and provided ways to keep Aria entertained.

“The service has been absolutely fantastic and they have gone out of their way to continue to support us as much as they can.”

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Linda Bor-Szlopovszky, mother of Aaron, three, who lives in Norwich, said: “I am forever grateful to Portage for teaching me all those things I can do now, not just to help Aaron in his development but to communicate and connect to him.

“Portage did way more than come once a week to play with Aaron. They help him to be in the right place in his world, to interact with other people, to keep his explorative mind working all the time and to build relationships.

Aria Beales. Pic: Jennifer Madden

Aria Beales. Pic: Jennifer Madden - Credit: Jennifer Madden

“I am trying to do all those things I’ve learnt and I can see how these are helping Aaron.”

Melanie Warren, the strategic co-ordinator for the service, said: “The reason we decided to make the rainbow-themed artwork came about as we were talking about colour-matching and colour activities, with the theme of rainbows, to use the current trend.

“We were overwhelmed by the response and how it captured families’ imaginations.”

Aaron Bor-Szlopovszky. Picture: Linda Bor-Szlopovszky

Aaron Bor-Szlopovszky. Picture: Linda Bor-Szlopovszky - Credit: Linda Bor-Szlopovszky

Aaron’s story, as told by his mum Linda

“Aaron has a global developmental delay, which means (in his case) that he is behind his peers in every area of his development, both in his social, physical, intellectual, emotional development and in his communication.

“Aaron is a lovely, happy and kind little boy, but the lack of communication makes his everyday life more difficult as he is unable to express his wishes and feelings.

“He often cries due to frustration and it’s heartbreaking when I know he wants something but I cannot find it out how to help him, even if it’s just an everyday little thing, like his favourite toy has not been switched on.

Aria Beales. Pic: Jennifer Madden

Aria Beales. Pic: Jennifer Madden - Credit: Jennifer Madden

“He doesn’t have any kind of danger awareness so we constantly have to keep an eye on him to make sure he’s not getting into trouble.

“Aaron explores everything with all of his senses and part of it is to put things in his mouth which is another source of danger.

“He recently started to walk independently, which is amazing and I cannot be more proud of him.

“Before lockdown, the amazing Kirsty Lowe had visited us every week. She’s still calling us in the same time when usually she came and she’s honestly interested to hear everything about Aaron and our family.

“At the moment, I’m trying to replace Portage visits with similar educational plays and interaction I’ve learnt from Kirsty. This doesn’t have a set time in our daily routine, it’s more like whenever I can see Aaron is interested in some games or just gets bored and could use some fun interaction.

“I have a toybox dedicated to Aaron’s educational toys and I usually take out two of them at a time and let Aaron to choose which one he wants to play.

“At some point during our day we also do some physical exercises with Aaron, these are to help him to gain core strength and help his balance skills development.

“Aaron is an amazingly well behaved and easy going little boy, he learns from routine so everything needs to be repeated many, many times in order to get him understands it. But once he does he’s doing his best to follow the expectations.

“I am forever grateful to Portage, and especially Kirsty Lowe, for teaching me all those things I can do now, not just to help Aaron in his development but to communicate and connect to him.

“Portage did way more than come once a week to play with Aaron. They help him to be in the right place in his world, to interact with other people, to keep his explorative mind working all the time and to build relationships.

“Even during the lockdown I am not alone, I have a strong, supportive background by Portage and some other professionals, like Aaron’s wonderful little nursery, and his one to one support person from there, also several NHS staff who helped us to make sure he’s safe and well looked after during this rough time.”

Aria’s story as told by her mum Jennifer

“Aria is very complex with several diagnosis which stem from contracting congentital toxoplasmosis. She has Hydrocephallus and as such has a ventriculoperitoneal (VP) shunt in place.

“The hydriceohallus means there is alot of fluid and little brain tissue in Aria’s brain. Having a shunt means that we have to be extra aware for any signs if malfunction or blockage as this can lead to pressure building and serious problems if left untreated.

“Unfortunately, the sign of a malfunction etc are very similar to a stomach bug so we have to be very vigilant.

“She also has epilepsy, so alongside any concerning signs for the shunt, we also have to monitor for seizures.

“Aria also has cerebral palsy and global developmental delay. Prior to birth, the doctors said it was unlikely she would ever wall or talk but she has proved them wrong.

“She needs support when out and about with a walker but in familiar and safe environments she manages without, although she can be unsteady.

“She is registered blind but manages well she struggles with lower and peripheral vision so she needs support to navigate her environment safely.

“She is beginning to say a couple of words although most of her communication is through body language and vocalisations so she needs support to be able to communicate with others effectively.

“However, despite all this Aria’s main need is sensory processing disorder. She struggles greatly in regards to her sensory input and understanding.

“She is very sensory feeling and constantly needs to bounce or spin and she needs to be able to do these activities for a significant length of time in order for her to be able to focus on a set task. She is also very particular about a lot of things but needs support to get this across to people.

“She doesn’t register her internal signals such as pain, tiredness or hunger, so she needs a lot of support with this. “She is constantly on the go which can make things difficult, particularly as her sensory seeking behaviours can lead to self-harm and harm to others, although she is not doing it to hurt.

“Our typical day revolves around Aria. Luckily, Joel [her brother] is very good and grown up so he is quite happy and capable of sorting his school work most of the time, but we help when needed and make sure that one of us is supporting him and the other Aria.

“However, as Aria can be very tiring, we often need to rotate roles. Most of our day is spent occupying Aria with some form of activity which is usually sensory seeking.

“For example, this could be bouncing on her yoga ball or spinning in her chair. There will be brief periods of time where she will play calmly on the floor by herself (once her sensory needs are met) but these are only brief.

“Portage has provided us with someone to talk to and to discuss any difficulties we may be having. It has made us feel like we are not alone and there is always someone there who we can turn to if needed for the extra support.

“They have helped us with tasks that have needed doing where possible and provided ways to keep Aria entertained.

“The service has been absolutely fantastic and they have gone out of their way to continue to support us as much as they can.”

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