As a parent of a child with Down syndrome I often have to read hurtful things online, sometimes from harmless people who are just not thinking , and sometimes from people just being cruel. I’m lucky that in my day to day life I’ve actually never faced any negativity, many do, but for me nobody has really said anything disrespectful to my face. But I’ve seen plenty on the online world. ‘Retard’, ‘mong’, ‘special’, ‘window licker’, even that my son would be ‘better of dead’ and is a ‘strain on society’. I read these things all the time, but for some reason I’m just able to shrug them off and they genuinely don’t play on my mind. I hate it yes and wish people were just better, but I refuse to give anyone the power to ruin our day. Especially when the chances are they’re a lot less content with their lives than we are! (I actually feel really strongly about the issue of how we respond to negativity and really believe we can do more harm than good with our anger. You can read about why here). I refuse to let another persons ignorance or hatred affect my life and I hope I can raise my boys to feel the same.
Something that does play on my mind a lot though is the term ‘forever child’. I hear it quite often, just last week in an online conversion being the most recent. This phrase was actually used by a mother of child with Down syndrome, it usually is, and it makes me cringe every time. I’ve even heard young boys with Down syndrome being referred to by their mothers as Peter Pan, the boy who never grew up! I don’t mean to imply that these parents are purposely being demeaning, far from it. These words are coming from a place of love, care, and endearment, and it’s merely a gentle way of expressing that their child may be dependent on other adults always. I just don’t think infantalization is ok.
Thinking of River as always being a child just doesn’t sit right with me and I find it quite degrading for him. Before anyone assumes that I haven’t accepted his disability, you’re wrong. I am 100% comfortable and accepting of Down syndrome, it’s a part of who he is and I am not in any denial about what it means for his future. I get that there are things in life that River may never be able to do and I get he may never live a fully or even partially independent life. It just won’t make him any less of a man in my eyes. He may well always live with me, but he may also be independent. Who knows? I’m not saying either way, I’m just saying we shouldn’t just assume our children are incapable. And even if River does need constant care and assistance, will the make him a child? Or will it make him an adult who needs care and assistance? Living with your parents does not make you a child, it makes you an adult who lives with your parents. I know men who live with their parents at 30, 40, 50 years old. Are they boys? Children? Or is that a label saved for those with Down syndrome? The same for an adult who may be involved in a life changing accident, resulting in brain damage and the need for lifelong care. Is it then ok to refer to them as forever children because they can’t care for themselves? Or what about the elderly? When people become old and need constant care, even to the point of changing nappies and feeding, are they then ok to be called children? Of course not. I say it time and time again, our abilities do not define us as people.
It just makes me really uncomfortable to think of River being a child forever and actually think it’s a kick in the face for him if I believe that. One day he will become a man, and I will never disrespect or limit him by believing he can’t outgrow his childhood. Infantalization is not ok! If we treat our children like babies they will act like babies, and if we can’t understand that as parents then how can we expect doctor, teachers and society to. I want people to understand that River is a human being, a little boy who will become an adult with his own thoughts, feelings, opinions, likes and dislikes. I want people to take him seriously and understand that his differences do not make him any less valuable.
I read a comment once from a lady who stated her daughter was “15 going on 5”. I could have cried. Maybe it was an overreaction, but all I could think was no, your daughter is 15 with a learning disability. She is not going on 5, she is not ‘like’ a 5-year-old, she is like a 15-year-old who has a learning disability. I understand that sometimes we have to look at development in terms of ‘typical’ ages in order to educate our children successfully. I get that our children develop at a slower rate and will seem younger as they’re growing up, but they’re not. I also know that this Mum adores her daughter and I know that it was not meant to be disrespectful, but her daughter is a teenager and soon to be a woman, regardless of development or mental ability.
People with Down syndrome have stated that they hate being treated like children, it’s something that really upsets them. Comments from the public like ‘isn’t she cute’ or ‘awwww he’s so lovely’ are infuriating to them! And rightly so. Adults with Down syndrome deserve to be treated with respect, and treating them like grown ups is a good place for us parents to start.
What worries me is that if we believe that our sons and daughters are still children, then how will they ever be capable of acting any other way? I worry that if we resign ourselves to the fact that our babies can’t grow up, then we will stop working towards that being our goal. I mean, why would I put so much time and effort into preparing River for adulthood if I don’t believe it’s possible? It’s not definite, but it is possible. It’s my job as River’s mum to help him find a way to live in this world to the best of his capabilities. It’s my job to help him reach his full potential, to guide him, support him and show him possibilities. How can I do that if I look at him as a ‘forever child’ or ‘Peter bloody Pan’? I can’t, it’s impossible. I’m ok with the fact that River is different, in fact I’m proud of him beyond words. But what I’m not ok with is people looking down on him, thinking of him as a boy forever and less worthy than any other adult. He is not less worthy.
He will always be MY child yes, as Skyler will be, but he will grow up. He will be a man, and he will be a great one, whatever direction his life takes.