“Archie’s favourite things are people, music and sport. If he could choose how to spend a day, he would go with friends to a sporting event, stopping at a cafe on the way there and back and arriving in time to enjoy any live music on offer. Better still, he’d travel there on a bus or a train so he had lots of people to talk to all the way there and back!
Archie has Wolf Hirschhorn Syndrome, a rare genetic syndrome that affects how both his mind and body work. He is very small for is age, has low muscle tone throughout his body and has a learning disability. He achieves something every day but takes longer to achieve things than most. Words were slow to come and he took his first steps when he was five.
Archie can get very anxious about things he doesn’t understand. He has no concept of time, so is always asking what’s next and when it is going to happen. He doesn’t like it when people are hurt or ill, he won’t look at you if you have a plaster somewhere on you!
Archie is brilliant with remembering all the little details in life. He tells us when we haven’t given him his medicines and I always ask him for people’s names. But when it comes to the practical things, he needs our help as his core strength and fine motor control restrict what he is able to do.
Archie is a happy, confident chap and is loved in all of the communities he is part of.
How has our Library Service helped?
It’s hard to find literature that relates to our children. I read to learn about shared journeys and gain new coping strategies and plans of action. This helps me to feel less isolated as a special needs parents and to give me the confidence to seek what is right for my son. I also read to share helpful things with fellow parent carers.
I have borrowed two books so far and have just requested my second two. I really enjoyed reading ‘Your Child Is Not Broken’ by Heidi Mavir. I loved her confident no BS approach. Am I allowed to say that? If not, here’s a warning, the book is very sweary! Thankfully Archie loves school, but Heidi’s son had a very different experience. It has helped me support parent carers who are struggling with the school system and it has bolstered my confidence in my unique parenting and family dynamic.
I am looking forward to receiving my next books and continuing to learn about families like ours.