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Jaylan as a toddler was highly challenging and emotionally rewarding simultaneously. Jaylan’s was growing up fast and so developing his own personality. He found a love of music and dance and this was enhanced his ever-growing bond with his sister. It wouldn’t be surprising if they would spend hours having a good old boogie as Verisa would try teach Jaylan some basic moves to some pop tunes! Jaylan’s cheeky and funny characteristics shone through as he tried new things and learnt new ways to interact with the people in his life. To this day, Jaylan has the incredible ability to have you in fits of laughter and cover you with love and affection.

We all know that, with the highs, comes the not-so-highs. The early years of bringing up Jaylan were challenging, to say the least. As parents, you want to make sure that you find the most suitable childcare, which undoubtedly can prove pretty difficult. Finding a carer with experience of special-needs children was one of our first hurdles in society and with the system. It was clear that looking after Jaylan would require more specialised support to meet his needs and help him develop at his own pace. 

We were fortunate to have been put in contact a childminder of similar cultural and religious background to us, which was very important to us as she automatically understood our background and our ways of life. She was a young lady who had previously worked as a Teaching Assistant supervising children with special-needs and was willing to look after Jaylan for us.

Becoming members of the Down Syndrome Association provided an insight into families currently living with someone with Down Syndrome and were a good information-bank with links to local services and other organisations supporting people with disabilities. Our struggles came to light when dealing with our local social services. We found the lack of attention and interest given to our case a real deterrent.

In the days where the internet was not on your fingertips and social media was not your showcasing what others were going through, links to certain websites and informational leaflets were all we got. It was our own responsibility to make contact with these organisations and solve any problems independently. In hindsight, we would recommend that families new to living with Down Syndrome use all resources at their fingertips to prepare mentally and physically for the hurdles you may face. 

Jaylan out on a family outing.

Years later, as Jaylan grew into his toddler years, we understood his need to mix with children without disabilities. A clear observation from Jaylan’s relationship with his sister, was that he mimicked her behaviour and particularly remembered her actions that resulted in a response from us – good or bad! We realised from early one the importance of Jaylan building friendships as this would teach him how to behave with others outside of home and help him interact with peers of the same age.

Many of the nurseries in our local area (then London Borough of Brent) did not have the facilities nor the staff for special-needs children. Yet again, we were stuck! After reviewing our options and a long search of our surrounding areas, we eventually found a nursery that was willing to try support Jaylan. 

As with any child in nursery, Jaylan’s behaviour became erratic and was of some concern. We could see that Jaylan was becoming increasingly frustrated that his peers were able to speak, sing, have a kick-about, ride a bicycle – all things that he was not able to do easily or at all.

When it came to Jaylan’s transition to school, no mainstream schools were prepared to accept him even though he had been assessed and provided with a Statement of Education. A statement of special educational needs (SEN) sets out the child’s needs and highlights the assistance they should have including any extra support (a link with further information can be found below). What seemed like a record on repeat, school after school were telling us that Jaylan couldn’t be put into a mainstream school as the extra care and daily resources needed for Jaylan would be a hindrance on other children’s learning. We had to broaden our search and perhaps make a choice that Jaylan was not going to be accepted into a mainstream school.

Alexandra School was a primary school specialising in care and education for children with moderate learning difficulties. Even though they were very supportive, we found that any time there was an issue with Jaylan, they were quick to ring either myself of or my husband at work. This proved very problematic and disruptive. We felt unsupported and backed into a corner. There was no guidance of where we could get advice to help Jaylan cope with his challenging behaviour and his new-found tendency of spitting, pulling hair, and scratching. We were not advised on any techniques or strategies we could put in place with Jaylan to relieve these anger habits. This once again, we had to trial and practice on our own.

As Jaylan developed as a child, there were various medical issues that came to light. We found out that Jaylan required hearing aids and glasses at a very earlier age. Parents will share our struggles in attempting to get a child to sit through an eye-test or a hearing test. With Jaylan, the challenge was amplified as it was near to impossible for him to communicate to us what he could see or hear. The complexities surrounding Jaylan’s sight and hearing was only the start of the medical attention he required. Jaylan also had great difficulty breathing during the night as his nose would block up as soon as he went to sleep. A large tongue is most common amongst those with Down Syndrome and this would cause an extra obstruction of breath whilst lying down.

We were introduced to a good paediatric consultant who had an interest in Jaylan’s case. The support and advice he gave us was invaluable. We were asked to trial the use of zinc drops to assess whether it would reduce blockage of the airways. The doctor was particularly interested to see if this treatment was effective on children with Down Syndrome. To our relief, this treatment proved effective.

Our account above summarises the some of the challenges we faced early on in Jaylan’s life. Our next blog will explore the prospects ahead for Jaylan as he enters adulthood and how Jaylan can become part of his community.

Author is Manjula Mistry

Manjula Mistry

Author Manjula Mistry

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