I was very poorly during my pregnancy as I had a blood clot on my lung. Although I was still going into work at my job in the food industry I was being sent home all the time, and I’m just glad I was living with my parents at the time because I was very sick. My waters broke at 28 weeks and my son was born premature… It was hard.
Scans showed white areas on his brain, but he was too young for doctors to tell me what this meant, and they said they wouldn’t know until he was older if he would have any problems. But as he aged, I definitely noticed some unusual things.
He couldn’t walk very far; he couldn’t get off the floor on his own and he couldn’t get up stairs… He just couldn’t move like other kids. We put it down to him being premature but then, during a procedure in 2019 when he was around seven, he was diagnosed with a muscle–wasting disease. They weren’t sure exactly what it was, but it confirmed my worst fears.
Time passed and we struggled as most of the appointments to help assess him and get a better diagnosis stopped due to COVID, and I noticed his condition get worse – he was losing the function in his hands and struggling to breathe and swallow food. This was hard for him because of how active he is and how hard he tries – he’s so kind and sensitive and intelligent and has done really well at school.
He loves coding and making games from scratch and bases them on games he likes. He’s also really creative and loves to draw things he’s imagined or make them out of playdough if he’s struggling with his hands. The thing he loves more than anything else though is aircraft – he loves aeroplanes and helicopters, and we’d visit the museum at an RAF base around ten times a year. But that finished with COVID, and I essentially had to take the year off work as he was on the shielding list. Although his father and I are separated he was very supportive: We’d make decisions together and he’d be there every day for our son… at times like this you have to put personal factors aside and focus on what’s best for him.
One thing that helped us during COVID was that we often visited a sensory group for children with special educational needs and disabilities.
Family Action’s SENDIASS team visited the group one Christmas and arranged for the children to get presents from the Toy Appeal.
My son got a toy helicopter which he was THRILLED about… it was a really big deal for him, and was even the same sort he loves – an air ambulance helicopter – so it was meant to be.
“My son got a toy helicopter which he was THRILLED about… it was a really big deal for him, and was even the same sort he loves – an air ambulance helicopter – so it was meant to be.”
But he wasn’t the only one who got a present that day. When you have a child with Special Educational Needs and Disabilities you need to get something called an Education Health and Care Plan (EHCP) to access certain funding.
It’s very lonely because unless you’re in that process or you know about that process you’ve got nobody to talk to about it. It’s a difficult, exhausting thing to work through and the amount of paperwork you need is overwhelming, but the Family Action SENDIASS team that I met that day have helped me with it and explored ideas such as him attending special school with me.
In some ways, I’d welcome it because he needs the support but on the other hand, he’s very academically intelligent… It’s a fine balance. They’re always there for me if I have questions. If some of the information that someone else gives me doesn’t sound correct I can ask them… Their answer is quick and detailed and gives me the evidence I need to make the case for extra support. From day one they’ve never just seen him as “the child you have to get off the floor”. They remember what he’d done and who he is. That meant a lot, and it’s taken the edge off that someone’s there every single day to help.
Almost a year later I’m still working through the process of negotiating the EHCP during the economic struggles the country’s having and it’s still a long and difficult one where all the agencies involved don’t always agree. My son is in alternative provision now so he can get his schoolwork done without having to go into school… It’s taken away all the barriers that schools unintentionally put up.
It’s important to him as hospital appointments, physical therapy and hydrotherapy were holding him back and getting in the way of his schoolwork… but he doesn’t want to let his condition defeat him. Therapy and hospitals are a giant cost for us with the travel and I or my former partner might need to stop in hospital or a hotel… sometimes up to twice a month.
I try and keep the petrol topped up so I’m not hit by the cost of filling up an empty tank, but it’s difficult and, like everybody else, keeping our house heated with us both at home isn’t cheap. We’re managing but money’s tight.
“Some children don’t have anything for Christmas and the Toy Appeal takes the pressure off the parents.”
That’s why your gift was so welcome, it meant a lot to him and I know it’ll be extremely valuable for other people who might be struggling this year.
Some children don’t have anything for Christmas and the Toy Appeal takes the pressure off the parents… … It allows them to say their children have gotten something
For my son it was something he really wanted – so much so it was weird – but all the kids who received one just loved it… their faces lit up.
This Christmas, families are struggling like never before. Find out how you can make a difference.
