As parents, we are in receipt of an expectation; An expectation for our children to gain new skills, to develop accordingly, in a given timescale and preferably in an orderly form. They should be able to meet milestones.
Of course, that doesn’t always happen. It seldom does as we are informed it should. Some children will be later in communicating through word. Others will not find their feet before they begin preschool.
Corry was titled with, ’global developmental delay,’ by the age of 18 months. He could sit, crawl, play, laugh. Oh, how he would laugh. The sound of his rib tickling chuckle still makes me melt. I knew he could understand everything being said to him, he could feel our emotions, and in return express all the necessary reactions to get what he required. He could hold a pen just as a child much older would be expected to, and he would use it to make intricate marks on paper. He could build, fit shapes and puzzles, make sounds through a recorder and clap along to rhymes. Yet, here was a piece of paper, with that term stated about him.
• Global developmental delay – A term describing a child that has not reached two or more milestones in areas of development.
Physically, Corry was having difficulty pulling himself to stand, and was experiencing unsteadiness in his core strength. In terms of communication, Corry was not forming verbal language. He was expressive and bright, but reserved in how and who he would be so with. He was also low on energy and refused to feed himself.
All of those wonderful things he had achieved, how he would manipulate so confidently with his hands, how he would cuddle and babble to his toys, how he learnt to use makaton sign and grasped the use of a walker. But in knowing his physical challenges, in siting his lack of language, his disregard for food, a document was produced stating that he had global development delay.
I didn’t, and I still don’t like the term. It highlights struggles and difficulties. It doesn’t take in any of the progress, any of the many, many strengths and wonderful features a child has. I can fully comprehend the need to note a difficulty or a health concern. It is relevant and important to be able to help and support somebody who has a need. But those words sit very uncomfortably with me.
What upsets me most is the likelihood of Corry struggling more and more with all of those brilliant achievements he made. He is now so fatigued. I see, slight changes taking place in him. I notice every so often that an ability Corry once so confidently practiced, suddenly seems to challenge him. And for that reason, he will highly likely never escape that label. A label that I never really found fair or just.
Another he received before his first year was up:
• Failure to thrive – a term, indicating insufficient weight gain or an inappropriate amount of weight loss.
Now that one came at me like a bull to the red. Because it was true. It was accurate. There was no exaggeration. What sort of parent cannot ensure that their child is well nourished? Why could I not meet his needs? I had an inability to provide for him the nutrition he required; The fuel he needed to see him grow and flourish. I felt it deep, still do, and I once was under the impression that everybody viewed me as a neglectful mother. I let anxiety build in me whilst in hospital. It was not only Corry being monitored, but myself. We were sent home. Corry, ever so slowly picked up. He ate a little more, he wasn’t so sick. We began to see light; the turning point we needed.
It didn’t last. Here we are again, ‘failure to thrive,’ in black and white, as clear as day. We know now, it isn’t something any of us have done wrong. It was never in our control to begin with. It is the devastating work of Alexanders disease. The first of many things that Corry will be affected by. But still, the term sits uncomfortably with me. I see him struggling to chew, to swallow. I feel his body wretching in a painful reflux.
For Corry, to feed is to be hurt. To Corry, it seems it is less harmful not to feed at all, and that is what he continues to learn. It is heartbreaking. I am his mother. I should be able to feed him, one way or another. It is not Corry who is failing. It is I. It is science. It is the lack of research. It is the disease. It is all but him.
Meeting milestones can be hugely proud moments, for a child, for a parent. They are an achievment and deserve the recognition we seek to give. But they aren’t the definition of a child. They are not all a child can be. And the same goes for these ‘labels’ that we must carry for medical purpose. Corry doesn’t have to meet a milestone to make me see that he is a truly fantastic person with so much to give, and so much to teach others. I disregard what ever term he is known by to the specialists. When they read on that piece of paper that he is failing and that he is lacking, I will know this not to be the case. I will know just what he is made of.
To quote Buddha ,’In the end only three things are important: how much you are loved, how gently you lived and how gracefully you let go of things not meant for you.’ And at that, he has already succeeded.