How lockdown has helped family understand son's additional needs

The Kirby family - taken by Kelly Goyette

Tony and Christine Kirby with son Arthur, aged three, who has additional needs. - Credit: KELLY GOYETTE PHOTOGRAPHY

Working from home and having less life distractions have proved to be positive impacts of the coronavirus lockdown for one Suffolk family - who have used their time together to understand their son's condition and move closer to a diagnosis. 

The Kirby family, who live in Stowmarket, have welcomed the extra time at home and the ability to stop and think this year, saying it has helped them understand their son Arthur's additional needs more than ever before. 

Arthur, aged three, came as a surprise to Christine and Tony Kirby, many years after they had been trying for a child with no luck. He was born with a condition called neonatal alloimmune thrombocytopenia (NAIT), where the platelet count is decreased and can lead to an increased risk of bleeding in the fetus and the newborn. 

Mrs Kirby said the birth was a difficult time for the family, and Arthur was very unwell, but they were overjoyed to have welcomed their first child. 

It first became apparent that Arthur had additional needs when he was about 15 months old, and was not meeting any of his milestones. 

He suffered from speech delays and was diagnosed as being completely non-verbal, meaning it is difficult for him to communicate with his parents. They now use the Picture Exchange Communication System (PECS), with the help of an incredible speech therapist, so that Arthur can communicate.

During the first lockdown, and after crossing paths with a special educational needs coordinator (SENCO) who indicated that Arthur might be autistic and could have sensory problems, the family sourced some private help. 

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They have since benefitted massively from IPSEA (The Independent Provider of Special Education Advice) and Suffolk Parent and Carers Together (PACT), who Mrs Kirby described as "a lifeline". 

"If it hadn't been for the lockdown and we hadn't received the help we have had from PACT and IPSEA, I don't think we would be closer to getting the full support that we need for him," said Mrs Kirby, who runs her own bookshop through Usborne books at home. 

"Without these services and support groups, we wouldn't be anywhere as parents," she said.

The lockdown has meant that Mr Kirby has been working from home and the family have been able to spend much more time together.

"We have not been distracted by things we normally would be," said Mrs Kirby. "This year has brought us a different type of curve ball, it's brought us a lot of information about Arthur and helped us understand how his brain works. For us it's only been a positive thing."

Mrs Kirby said the extra time spent at home has "helped massively" and has allowed them to establish a route to go down for Arthur's future. She has done some online training with the help of IPSEA, all about EHCPs (which stands for Education, Health and Care Plan), outlining any special educational needs a child has, and the provision a local authority must put in place to help them.

Mrs Kirby said not having any other children has made it difficult to understand whether their typical day is 'typical' to everyone else. It is only when Arthur socialises with other children that it is evident he has additional needs. 

"Everyone has been supportive as a community and people have had more time for others this year. I think it's made people more community minded and aware of how fortunate we are," said Mrs Kirby.

"We don't feel alone anymore.

"The SEND services are still massively stretched, especially with the pandemic, but the support we receive is so important."

The Kirby family are now hopeful that they will be able to get a diagnosis for Arthur in the new year. 

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