Before the conspiracy theorists get all excited let me explain. Harri and I this week became one of many Western Australian families who donated some time, measurements and blood to the Autism Biological Registry. A state run facility, The Children's Telethon Institute manages this data, and allows those undertaking Autism relevant research to access this crucial info.
Being an advocate for science and good research I felt compelled to participate, and am so glad I did as it was a painless process. Harri of course played the starring role. They undertook an assessment of his basic social and language skills, which I am pleased to report he blitzed. I could quite clearly see the ABA learning coming through. He was pointing and giving appropriate eye contact. He was easy to engage and even gave a doll a drink when told she was thirsty much to my surprise. I could not have been more proud of him.
Then they took all sorts of measurements. Hands, nose, legs, hips, head. You name it, they measured it, oh except for you know what. Then the dreaded blood taking moment arrived. The one thing I had some ambivalence about as obviously I did not want him subjected to unecessary pain, yet recognise how important blood samples and the precious information they contain can be. On careful consideration it occurred to me that Harri scrapes his knees, bangs his head, jams his fingers and so on several times a day, and these incidents are far more painful that the drawing of blood by a skilled nurse. And so I agreed, and it was fine. He was as good as gold.
So there we have it. Harri and I are now stored, in part, for others to access. As I said in previous posts the pursuit of a cure for Harri isn't a pressing issue for me. But I do appreciate it is for those families more adversely affected by Autism. I hope our small contribution this week may go some way towards that end.
Being an advocate for science and good research I felt compelled to participate, and am so glad I did as it was a painless process. Harri of course played the starring role. They undertook an assessment of his basic social and language skills, which I am pleased to report he blitzed. I could quite clearly see the ABA learning coming through. He was pointing and giving appropriate eye contact. He was easy to engage and even gave a doll a drink when told she was thirsty much to my surprise. I could not have been more proud of him.
Then they took all sorts of measurements. Hands, nose, legs, hips, head. You name it, they measured it, oh except for you know what. Then the dreaded blood taking moment arrived. The one thing I had some ambivalence about as obviously I did not want him subjected to unecessary pain, yet recognise how important blood samples and the precious information they contain can be. On careful consideration it occurred to me that Harri scrapes his knees, bangs his head, jams his fingers and so on several times a day, and these incidents are far more painful that the drawing of blood by a skilled nurse. And so I agreed, and it was fine. He was as good as gold.
So there we have it. Harri and I are now stored, in part, for others to access. As I said in previous posts the pursuit of a cure for Harri isn't a pressing issue for me. But I do appreciate it is for those families more adversely affected by Autism. I hope our small contribution this week may go some way towards that end.
Good for you and Harri! I'm glad you did this. I'm like you---I'm not too overly concerned about a cure, more for acceptance and understanding.
ReplyDeleteThanks Lizbeth.
ReplyDelete