It's true what they say ; the biggest steps can seem so small to others.
When J gives me a smile, it still means a lot. Smiles are very rare from him, when directed at a person. He does smile at many things, but to look me in the eyes and smile, that is a connection from him to me.
His youngest brother, W, 3 years old, who has congenital nystagmus, has only just started to attempt to say his own name. Because of the 'sweeping' effect of nystagmus, W is unable to focus on mouth shapes and how they change for different letter sounds. His general speech has come on massively over the last 6 weeks, with sentences, structure, and thought going into what he says. He has refused to say his name whenever asked. He refers to himself as 'Me'. So if asked what his name is, he replies "Me". I randomly asked him the other day, and he shocked me with his reply. It was not anywhere near what a stranger would perceive to be his name, or understand him, but he tried, and he did it, albeit not sound perfect. I recorded him, and sent the clip to family and friends. I am so proud of him.
J surprised me a few weeks back, when he replied to a question I asked.
I always talk to J as I do to my other children. In my eyes he is no different to them, they are equally a part of me. When he is hovering around me, I chat to him. I never get a response, apart from echolalia.
In the kitchen one evening, he was making his toast whilst I monitored him. That day he had been awarded a 'Silver Coin' at school for his excellent math work in class. The school sing two songs at the start of the special assembly, but the staff member that let me in to the hall was late, so I had missed the first song.
I do love to join in with the songs, as the children are just so beautiful in their efforts of singing and clapping - again something that many parents take for granted, but to us special mums it means a great deal every single time.
In the kitchen I asked him what the other song they sing was called. I had already named the first one. He replied with its full title, and then sang it for me. Yes, okay, it was probably just because I had already said the other song name, so it was just him saying the name of the one I asked about.
But, this is the first time he has ever responded to my question. He has never spoken to me, just at me when trying to request something he wants.
I texted family and friends again to tell them. They understand the great significance of these small steps to me and are equally happy and proud of J.
I love to hear about other special children, and their achievements both big and small.
We know how hard it can be for some children to do what is perceived as something perfunctory by others, so when they overcome an obstacle, or make progress, we all praise, we all cheer, and we feel the glow and happiness from that child's proud parents.
We can find beauty in even the smallest of things.
