When River was diagnosed and for quite some time after, people often used to comment that ‘it must be mild’, ‘you can’t even tell’ or ‘he must only have it a little bit’. And even though I soon learnt that it wasn’t even possible to have Down syndrome mildly, that you either have it or you don’t, I was still really happy when people said it. It brought me comfort when people told me he didn’t look like he had Down syndrome, because if people couldn’t tell, then it couldn’t be that bad right? He must be closer to a ‘normal’ child than other children with Ds.
I am so ashamed of those feeling now; although I try to remind myself that it was just part of the process. I tell myself that we all have to go through that process of acceptance. I was just a mother to a new baby with a huge diagnosis, and I was clinging to the best case scenario. I also remind myself that the people who said those things were just saying what they thought was the right thing, what they thought I wanted to hear. I also now know what people mean when they say it must be mild, it may be the wrong wording they’re using, but what they mean is ‘he must be one of the high functioning ones’.
So is River ‘high functioning’?
To be honest, I’m not even 100% certain what it even means, but I’m going to take a shot at it meaning how close to ‘normal’ is he. And that is exactly why I refuse to ever use functioning labels with him. I will never refer to him as high or low functioning. It’s just another label and we are so tired of labels. He’s alive, he is breathing, so therefore he is functioning. As long as he functions to the best of HIS ability, then I can live my whole life without labelling him further. I can also go my whole life without knowing how others label him; I just don’t want to know.
I love and accept River for who he is, for whatever needs he has in life, at whatever stage in his life. His life is worth living and it really doesn’t bother me that he will need some help along the way, however much that help may be. I refuse to disrespect him or any other person with Down syndrome by looking at them as better or worse than each other based on their abilities. It is dangerous to anyone with learning disabilities and really unfair. Nobody should ever feel like they are not a complete person or that they are beneath other people who have Down syndrome but are more able. They should never feel that people labelled as ‘high functioning’ are more worthy of love and respect.
If I told you River was ‘low functioning’, would it alter him in your eyes?
Would it? Is it easier to look at a person with Down syndrome if they are high functioning? Is it easier to acknowledge them or interact with them? Is it easier to love them? Is it easier to accept them if they are closer to what society states as normal, to include them?
And what facts decide who is high functioning? If a child with Down syndrome is not potty trained and can’t be without supervision, yet they speak perfectly and can read the whole Harry Potter series, are they high or low? If an adult with Down syndrome can’t live independently, yet goes to work every day and has an active social life, are they high or low? What about a middle aged man who doesn’t have Down syndrome, yet still lives at home with his Mother, is he classed as high or low functioning? What about a typical adult who lives alone, yet is uneducated, illiterate and unemployed? High or low functioning? I think that’s what bothers me the most. That nobody feels the need to question a typical person as to how well they function, yet they do my son.
At 2 years old River is feeding himself and eating pretty much any types of food, he drinks from a real cup, has a variety of words, answers yes or no to questions and loves socializing. Yet he is not even close to walking and can’t even stand unaided. Is he high or low functioning? And who’s to say that even if a child is functioning at a certain level at one point that their development won’t speed up or slow down at any point? I have no idea whether River will be able to live any type of independent life, but I do know that it won’t make me see him as any less amazing if he doesn’t.
The truth is that whether a person has a disability or not, we are all good at some things and not at others, we all have our strengths and weaknesses. People can be high functioning in some areas and low functioning in others, exactly like River. We are all just different, with different abilities and strengths. It is unacceptable to base a person with Down syndrome worth within society, based on the things they can and can’t do. Nobody labels me as high or low functioning, nobody labels my husband. Not once has a stranger come up to me and asked whether my son Skyler is high or low functioning, nobody has labelled him so why should they River?
If your child has Down syndrome, please make the extra effort not to be a part of it
The saddest thing for me, and the thing I think we need to work on really hard, is not to use these labels within the Down syndrome community. Describing how well our child functions and labeling them can, and will, divide our community in half. I have seen it happen and it’s like watching a game of ‘my child is worse than yours’.
‘You don’t understand, your child is high functioning’
‘Your life is not as hard as mine, you don’t get it because your child can…………….’
‘If your child was low functioning you would not be so happy and accepting of Down syndrome’
And it works both ways,
‘My daughter is high functioning; she is keeping up with her peers and is such an inspiration’
‘My baby is already trying to crawl; he’s such a high achiever’
‘The doctors are so impressed; they say she’ll definitely be high functioning’.
Please try and put yourself in the shoes of others, whichever side of that ‘functioning’ fence you feel you may be on. Does a mother whose child you view as high functioning deserve less support or less compassion than you? Does she deserve for you to assume that things are easy or that her struggles, needs and thoughts are less important than yours? Does a mum who feels that her child low functioning need to listen to you bragging that yours is high? Does she deserve to be pitied?
See what I mean? A community divided when we’re supposed to stand together and be a team. Our children need us to be a team and a strong one.
Our children need us to be better than that and deserve more
It is our job as parent s to help our children reach their full potential. THEIR full potential. It is not our job or our place to label them, to think of them as more or less, to limit them or pressure them, or value their worth on how much like ‘typical’ people they are. They don’t have to be like ‘typical’ people to be of value to this world.
Society loves to label people and it loves to divide them. As parents of people with Down syndrome, or actually as parents of any child, let’s try and be better than that. Let’s show the world that whether our children are perceived as high or low functioning is irrelevant, and that they are still worthy of life. They are worthy of a happy, fulfilled, important and respected life.
Labelling River based on his functionality disrespects him as a human being, and high or low doesn’t need to be addressed by anyone. He is functioning and that’s enough for me. If it’s enough for me, his mother, then don’t you dare value his life on the things he is able to do. Don’t dehumanize him, please. He deserves more.
River is functioning as himself. He is functioning in his own unique and beautiful way.
He is just himself.
He is River.