Having a child with a disability has definitely given me a different perspective on life. Before having Ryan I didn’t really appreciate where this would take me. I never really thought about people with learning difficulties and disabilities and then all of a sudden that is all I could think about and it felt like it took over my whole life. Having a child who was different to what people perceive as ‘normal’ made us realise what our priorities in life would be and appreciate our loving and supportive family and friends more. We definitely encountered a few people who we considered as friends reacting negatively to Ryan and ourselves. For some people it seemed like we didn’t fit in with their life anymore, we weren’t the normal new parents showing off their new baby. We were the parents showing off our beautiful baby boy with a very big difference and we were starting a different journey to our friends.
In the first few weeks of having Ryan it wasn’t so obvious that he was different, when we went out he slept in his pram like every other new born, it was only as the months progressed it became more obvious that his development was delayed. That is probably when people started noticing more that Ryan was different. At baby groups he wasn’t sitting up like the other babies and playing with toys like they were, at times it felt like you had to explain to people who didn’t know us why Ryan was different, it felt as if we had to justify why he was the way he was. The same goes for strangers that you would pass in the streets, I am sure everyone is the same when you pass babies or young children in the street the natural instinct is to smile at them, people would smile at Ryan but then it is like they clocked he was different and you get the pity look and the constant stares.
As Ryan got older and his behaviours and challenges changed the more people would stare at him and the more it felt like people were judging us. Many a times Ryan has sat on the floor when we have been out, whether it is in a supermarket, a shopping centre or a restaurant, and refuse to get up. When he is like that there is no easy way to get him up and quite often we have to just wait it out. The disapproving looks you get from people when he displays this kind of behaviour is hard, it is like you are being judged on how bad a mother you are as you can’t control your child. Why do people, strangers, feel like they have the right to judge you, pity you in the few minutes they see you trying to do your best. They don’t understand Ryan and they don’t know anything about our life but yet strangers feel they have the right to make you feel so inadequate. They don’t realise how much you already judge yourself and constantly wonder if you are doing the right thing, the best you can.
Society as a whole still seems to have very negative views of people with disabilities and people who don’t fit into a ‘normal’ category just because they look different, sound different and act differently and I don’t want my boys growing up worrying about fitting in, everybody is unique in their own way and we shouldn’t be made to feel any less adequate than others.
A lot of the time I feel like you have to explain to people how Ryan is before any of his behaviours are seen. It is as if we have to pre-empt what will happen, we went to Florida last year and before we flew I was nervous that other passengers on our flight would say something about Ryan. Over the past few years he has rocked more and more (definitely a sensory soothing behaviour for him) and I was so worried he would sit in his seat and start rocking a lot and this would annoy the people behind us. As soon as we got on the plane we mentioned this to the stewardess so she was aware and luckily no-one was bothered by Ryan. When we are out in public and Ryan starts rocking I try and get him to stop as it does create a lot of attention and looks from people but this is one of the ways Ryan uses to make himself feel safe and calm and why shouldn’t he be allowed to express himself freely. You do worry about the way Ryan is going to behave in public and a lot of the time we tend to go to places where we know Ryan feels comfortable and safe and accepted.
People can see Ryan has down syndrome but they can’t see he has autism and anxiety and I think that is where some of the problems lie when disabilities are not always something you can see. I don’t think society will ever truly change the way it sees people with disabilities and accept them for who they are. All we can do is make sure those we love and care about feel safe and secure and happy in themselves. Society may not always be accepting of Ryan and his particular ways but I challenge anyone to spend even an hour with Ryan and I promise you, you will fall in love with him for who he is and not just see a disability. After all he is the best medicine, his smile and hugs alone speak a thousand words……………
ourupsidedownlife.com 