A Blog About a Bloke-Living with WHS

I recently got asked this question through the Formspring link to the right. Here is the answer! Does your son walk and does he use the bathroom on his own or wear pullups? Thank you for the question! Ryley does walk, and has been walking independently now for nearly 2 years. He started walking with assistance when he was quite young, but because of his size and low muscle tone he would tire very quickly and always needed assistance. He still gets tired now, but can walk for longer! Ryley is in nappies (or diapers for those outside the US) all the time. We do have a special toilet for him so that he can sit on it easily. He has used the toilet quite a few times over the years, but he can't communicate when he needs to go yet, so we are working on helping him make that connection at the moment. While he is on long holidays over summer, we are going to try again with the toileting. I don't expect him to ever not need a nappy or pullup, but we will keep working on it, becau...

             Acceptance of People with Disabilities-Does our society really accept difference? In the not too distant past, people with disabilities were institutionalised and were subjected to all kinds of horrific 'therapy'. I shudder when I think about electric shock treatment, beatings, starvation and people being put in straight jackets. It's hard to imagine that this is the way that people with disabilities were treated 30 years ago. Things have changed, but have attitudes? Growing up, my only real experience with someone who had a disability was with my 2nd cousin. I can remember feeling really sad for him, and wishing so much that he could walk and do what we did. I often thought I could a longing in his eyes too, but then I don't remember me ever spending much time actually including him in my play. I can also remember another child at primary school who couldn't talk properly and noone wanted to play with her. ...

                                                Labels, Diagnosis and What Next? I was talking to another mother last week (Hiya Shaz if you are reading!) and we were discussing what it felt like for us when we first got the diagnosis of Wolf-Hirschhorn Syndrome. Because Ryley wasn't officially diagnosed until he was 2 years old, it was actually a huge relief for us. To finally have a name, to be able to share an identity with others, and to be able to move forward gave us a sense of peace. Shaz agreed that for them, even though they recieved the diagnosis much much earlier, they also didn't feel devastation, they just wanted to move forwad. For us, the label didn't change Ryley. It didn't mean he was WHS. He was still Ryley, the one we loved ...