I’m the mother of three lovely children. My middle son, Toby, is a beautiful little boy with a cheeky smile and an adrenalin junkie. He loves fast rides, fast cars, fast scooters and…well, you get the idea. He’s great fun and has his own views on life, which he makes pretty clear even though he is five and a half years old and has never spoken a word.
Toby has severe, profound and multiple learning disabilities (SPMLD). As well as having severe language and communication difficulties, Toby finds loud noises, new people and new environments difficult to manage, and can become very upset when he’s in a place he’s not sure about, or if someone is mowing their lawn or using a hair dryer. Life can be difficult for Toby because normal life is full of noise, new people and new environments.
Life isn’t always plain sailing for us, Toby’s family, either. We try to lead as normal a life as possible, but every meet-up with friends or pub lunch or even a trip to a playground requires a fair amount of planning and, usually, an exit strategy. We can usually stop Toby from picking coals out of a friend’s treasured fireplace or escaping out of a pub door for a limited period, but then comes the point when it’s definitely time to go.
Over the years, I have learnt a lot about looking after a child with a learning disability. I also have a lot to learn, and also a lot of things I need to look into. Are there any therapies that might help Toby that we don’t already know about? Are there any doctors or hospitals or experts we should be talking to? Are there any clinical trials that we should be putting Toby on? And the question that haunts me late at night: what happens to my gorgeous, adored son when he grows up and we aren’t around?
I know that my husband and I are not alone. There are many, many other parents of children with SPMLD who are on the same journey as us. So I thought I would set up this website to share any information that I glean on my parenting journey, and for other parents to do the same. I will write about what I have found out, and would love you to get in touch with what you have found out, too, so I can add it to the body of information. Knowledge is power, and who doesn’t need a bit of extra power?
I’ve called the website The Special Parent. This is a little tongue in cheek, as there is certainly nothing special about me; I’m just a mum who happens to have a child with a learning disability. But I also like the idea of there being a little club of parents of children with special needs – special parents, doing our very very best for our little group of beautiful, special children.