Disability Rights

Down’s Syndrome Awareness Month 2019!

October is Down’s Syndrome awareness month which gives me a reason to do another post on how adorable Tommy is. A few months ago I did a post about Tommy and my feelings towards no longer being the only disabled member of the family. However, that post was 4 months ago now and Tommy is now 7 months old so since then he has taught me an awful lot about what being a cousin means. I am very close to my family and we are always in regular contact- to be fair I would say that me and my cousins are a lot closer than most. I am very fortunate to be so close to my cousins and am thankful for their help as just like I’ve said about my sister sometimes even with my younger cousins I still feel like I am the one being looked after. I’m the one who has to grab on to their arm and I’m the one who asks them to carry my drink. As I’ve said time and time before this is fine I’m used, to it I’m not going to have a break down about it anytime soon; when a younger cousin asks you to help them and you have to redirect them to their other cousin, that’s also younger than you it can be a bit disheartening even if it’s something small like carrying their drink.

But with Tommy it’s completely different… Yes, I’ll never be the go-to cousin for practical elements and I can’t pick him up and bounce him; I can offer Tommy something that no other cousins can because I have a sense of understanding and that will always make our relationship special (even if he wriggles too much to sit on my knee). Even though Cerebral Palsy and Down’s Syndrome are completely different conditions Tommy and I have similarities and can understand each other in a way that no other family member can. Just like my parents have a new connection with Tommy’s parents because they understand what it’s like to have a child with needs. Since Tommy has been in our lives he has taught us so much and has enabled us to be closer as a family especially Amanda and me. This is because we now have something in common that we never thought we’d have in common and I must admit sharing experiences of disabled activism with a close family member is a very good feeling. I feel like I have taken on two roles one of them being the best big cousin to Tommy and the other one being the best little cousin to Amanda!

Amanda always keeps me updated on Tommy’s latest appointments- I love hearing about how he is getting on as I said sometime’s I can’t give advice but sometimes I can and even though my experiences aren’t the same as Tommy’s at times they are similar. An example being that me and Tommy both do physio and even though Tommy’s physio is different to mine me and Amanda still send ‘physio selfies’ and can still talk about it, mine and Tommy’s physio needs are different but we both have physio needs and that forms part of our special bond. I also relate to Tommy from an occupational therapist perspective- I have always said that I could see myself working in paediatrics’ so being able to listen to Tommy’s experiences just inspires me to become a paediatric occupational therapist even more because I want to help Tommy and understand his needs in the best way possible. I do feel like I have a better understanding of Tommy’s needs and the reasons for his therapy interventions such as ‘tummy time’ even though I’m only a year into my degree.

But, despite having this bond with Tommy- I love him for being Tommy and yes we would have had a different bond if I wasn’t disabled but I still would have loved him the same. Just because I understand his situations a bit better than other family members doesn’t mean I’m an expert on Down’s Syndrome either because I still have a lot of learning to do. Does it help me that I’ve had a seminar on it? Of course, but my own learning on Down’s Syndrome has just started, and this is what Down’s Syndrome awareness month means to me. Down’s Syndrome awareness month is an opportunity for me to learn more Down’s Syndrome and to learn more about Tommy. Yet, this blog is a start because when I’m writing about Tommy I learn so much about our relationship and the steps I need to take to keep building our relationship in which I and Tommy can always look back on to remember how significant our bond was even just 7 months in to his life.

Thank you for reading. Please share and spread awareness about Down’s Syndrome!


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