I don’t use the word dread lightly. This word fills me with fear and apprehension. Ever time I hear it is makes me feel physically sick. To hear this word spoken over any person, child or adult, is utterly heartbreaking. Yet parents of special needs children, especially those of children with progressive conditions affecting cognitive development, hear it often.
I dread that word. It is a sad word. It signifies loss, going backwards, the lack of ability to do something the person was able to do before. And it is very, very real. And at times it is scary.
Every now and again I get accused of over sharing. Some people feel I video and photograph and talk about my children perhaps more than I should. But one of the reasons I do that is because of this dreaded ‘R’ word. It is because I NEED to remind myself my child was able to do something at some point because today he has no idea about it once again.
Memories are what keeps me going.
So all children regress sometimes they say. That is very true. Stress, trauma, neglect, illness and change in family circumstances can all contribute to moments when any child can regress. It is common for a toddler, for example, to ‘forget’ the skill of toilet training when a younger baby is born. Or for a young child to take a few first steps only to lose nerve and go back to crawling for a while. It is widely understood that during illness or even long school holidays children can forget reading skills or physical skills they had long ago mastered. I get that. This is temporary regression. And, as hard as that is to live with, almost all children regain the previous skills and ‘make up time’ when their health, education and daily life return to a stable place again.
But how do you live with the fear of regression permanently?
What if every single skill your child gains you live in fear he will never be able to do again?
I have a video of my six year old son putting numbered pieces into an inset puzzle. It was a huge achievement for him and I shared the video on social media. Now a year later, and presented with the exact same puzzle, he has no idea how to do it.
And that is why I share.
He doesn’t master skills and then move on to better ones. His development is never that straight forward sadly. I need to be able to know he once did it. I need other people to know he once did it too. He has potential. It is just inconsistent.
He once said ‘mummy’. Last week he was saying what sounded like ‘oh no’. Some days he can point to letters in a book if I ask him to. School even sent a video home a few months ago of him ordering the months of the year with support. I have a video of him using a game on his iPad to put letters in the right place to make words.
Today he has done none of those things. Some days he crawls up stairs like he has forgotten how to climb them. He now uses a straw to drink out a cup because he often forgets how to drink out of an open beaker.
As fast as we gain one skill we often lose another.
My son has global delay, autism and neurofibromatosis type 1.
According to professionals this happens.
I dread that word.