I just watched the Australian Story episode about two young adults with Down’s syndrome, Michael Cox and Taylor Anderton and their desire to get married and start a family. It viewed on TV just a few weeks ago. Wow! What a complex situation for everyone involved (especially their parents) and what a frustrating and hard position these two young adults find themselves in. It made me feel incredibly emotional and it made me think a lot about Oscar and his future because the man, Michael Cox – well, I can see Oscar being just like him one day. Michael is a fantastic swimmer. He is very good intellectually. He is strong and motivated and knows his own mind and what he wants and he is a true romantic – this is my Oscar in every way. Michael’s family, in actual fact both of the families have done an amazing job in raising Michael and Taylor in homes where their dreams and aspirations are supported. Where they have been told they can do anything and be anything they want if they work hard enough for it. This is how Richard and I see Oscar and this is what Rich and I tell Oscar. However now these families are finding themselves in a really sticky, messy, emotional situation where they’ve set Michael and Taylor up to achieve a relationship, marriage but are they capable of being parents? They think they are! They have been told their entire lives they can do anything they want and now that they want children, their parents are putting the breaks on. Oh my gosh, I feel for these parents and do not wish to be in their shoes. As Michael’s father says in the interview ‘We have told them they can achieve their dreams. How do you wind that back? Have you set them up for failure?’
When Rich and I first had Oscar and we were still in hospital getting our heads around the diagnosis, we woke up on day three in the hospital feeling full of strength and bravado. I know because I kept a diary of all our thoughts and emotions. We woke up (both of us, which was uncanny) believing we can do this, we can tackle the world with Oscar, we will make him the best he can be and we will try and help him to achieve all his goals and have everything that a ‘normal’ person has and experiences. We promised each other this and we promised this to Oscar. That day we had a visit from a lady called Judy Davidson from the Down’s Syndrome Association of NSW. I think she was a bit gobsmacked when she first met us because she found two super charged, gung-ho, ‘we can conquer the world’ parents of a newborn baby with Down’s syndrome, not two wallowing messes. However she said to us and we will always remember this “Just be careful when you raise Oscar that you remember he does have Down’s syndrome. That will never change. You can make him great but if he’s too great then where does he fit into society? He will eventually need to identify himself as a man with Down’s syndrome and he does need to belong somewhere. You don’t want to find that he is too good and doesn’t identify with the Down’s syndrome community but also doesn’t fit into the ‘normal’ community”. Rich and I already feel this way sometimes with Oscar and we wonder, like Michael and Taylor’s parents, if we are doing the right thing pushing him to be so “normal”. Oscar is bright and he is very capable. At the moment he doesn’t see himself as any different from the other children in his mainstream class at school. He definitely doesn’t realise or understand he has a disability. However he is already getting frustrated with us because he wants play dates and sleepovers and wants to walk into school on his own like his peers do and be allowed to walk down the road and buy an ice cream from the local shop by himself and be allowed to ride his bike or skateboard on the quiet road outside our house without my supervision…. and the list goes on. But he can’t! He has absolutely no road sense or safety sense. He gets distracted easily and loses track of what he is meant to be doing. He runs off for no reason and then when you ask him where he was going, he answers “I don’t know” and he honestly doesn’t. He will go with absolutely anyone – so stranger danger is a huge fear for us! Yet in his heart of hearts he desperately wants to do what all the other kids his age are doing and he gets very upset with us and screams “why not?” and cries when Sadie gets play dates and sleepovers and he doesn’t. And that is very hard as a parent and it is very hard for him because he feels we are just being mean and unfair. It breaks my heart to be honest.
Oscar is already deeply fascinated by the idea of marriage. I don’t know whether people with Down’s syndrome are genetically constructed with an extra dose of romanticism but it seems prevalent in the people with Down’s syndrome I have met. He already talks about the girls at school that he likes and is going to marry. He pretends he is getting married ALL the time. He plays the groom then the celebrant and he has even role played the bride. He re-marries Richard and I whenever he gets the chance and he even got me to dress-up in my old wedding dress and had Sadie marry us recently. I hate to think how his gooey little heart and mind are going to be when he hits early adulthood and “hopefully” finds himself a wonderful girlfriend or boyfriend (if that be the case) and wants all the other things. Things he should have. Love, companionship, sex. Why not! Which brings me back to this Australian Story episode and these adults and their parents. What a hard decision they have in front of them. Are Michael and Taylor capable of parenthood? There is a lot of support out there these days. There are a lot (LOT) worse people out there having kids. Are their parents playing God by intervening and saying no. Not that they have said no yet. They are struggling through that minefield at this moment and I feel for them because I can see what a wonderful job they have done to date with Michael and Taylor and how independent they have made them both and I absolutely applaud them for this.
Our Pediatrician told us very early on, when Oscar was a very little baby that there is a good chance he may be infertile. We do not know if this is the case yet and a bit of my heart broke when she told me this, for Oscar’s sake. For the fact that he probably won’t ever get that amazing opportunity and he has so much love to give. It seems very sad that people with Down’s syndrome who have such a large propensity for love and affection are jilted in this way. Oscar doesn’t speak of having children, only marriage at this stage…… but he is only eight years old. I know that time will come and I know my heart will ache for him.
One thing this episode has taught me which is easier said than done, is as a parent you have to let go. I don’t mean let go and let them get pregnant but if they are young adults and want to live together and are capable of living together then why not! There seems to be a common thread when it comes to young adults with disabilities and their parents. That the parent or carer is the one who has the hardest time making the change. That the parent is the barrier to this happening. I am not trying to place judgement. I have not met this challenge yet and as a parent you want to hold them and protect them always. However I stand by my decision eight years ago, to try my very best to help Oscar to achieve all his dreams. So please family and friends, kick me when the time is right if I am standing in his way.
If you wish to view the Australian Story episode about Michael Cox and Taylor Anderton here is the link – http://www.abc.net.au/austory/content/2016/s4539439.htm
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