Sunday, September 30, 2007

The Possibles 2

Actually, I think it's really healing for me to work with the teenagers who have Ds in the photography club we've put together. Somehow meeting such individual and similar, fun and reserved, cautious and vivacious young people has helped reaffirm to me that Alfie will grow into an individual, an Alfie. He will be himself. And I don't have to worry about that too much. Everyone is so different, but if he's anything like these kids, I will be very proud.

We've got some more pictures up on The Possibles blog.

Thursday, September 27, 2007

The Possibles 1

Our new club, The Possibles, is starting on Saturday so I've been running around with Renee (the other artist) getting everything organised.

One of the young people who is taking part came up with the name 'Teen Possibles' - I think it's great. Other members have rehearsed a hip hop dance, thought up a theme song, and even made a power point presentation! This is all before we actually start! We're all getting quite excited.

Please visit our Possibles blog to find out more.

Saturday, September 08, 2007

Noah is a Hot Potato

Here is a slide show of Noah. He chose the music - it's called 'Hot Potato' by The Wiggles, (thought I'd put that in case you want to buy the album!).

The Developmental Report

RE: McCarthy, Alfie Peter
Unit Number: P0044hosp7
Date of Birth: 29/06/06
HCN: 02834948372
Location Code: Dev
Seen in Clinic: 25/07/07

Alfie and his mother were seen in the Developmental Clinic in followup today. Alfie is now 12 - 1/2 months old and was last seen in May 2007. As you know, he is a little boy with Trisomy 21 and congenital CMV infection. At the time of his original consultation in May, Alfie was unwell and we were unable to complete a developmental assessment.

But now we have done it and are sending this copy to his parents. It will be interesting for them to read this 12 page report about their son and useful for them to have a copy of the information that is used to assess his development. But in addition to this, it will feel a little bit demoralising. They will read through a description of their son that concentrates on all that is 'wrong' with him, from his head, to his toes. Alfie's mother will process this by re-writing the report so that it more accurately describes her son.

On examination of head and neck, Alfie was noted to have a large anterior fontanelle with a relatively flattened occiput. He has his mother's eyes and a little button nose. Examination of the extremities revealed short, broad hands, again like his mothers. There is a gap present between his first and second toes on both feet. On neurologic examination, no facial asymmetry was present and he is undoubtably an extremely handsome child.

All the achievements of which his mother and father are so proud will now be dismissed in short sentences that compare him to a large number of children who do not have Down syndrome, and for all we know, might have nothing special about them at all. On the gross motor subscale Alfie had an equivalent age of 7 to 8 months. On the Self-Help Subscale, Alfie had an age equivalent of 9 months. His cuteness factor was 140% and by parental report his happiness level is equivalent to that of a child who has been born into a loving home and adored, from the very start, by all who have ever met him. His mother and father are, quite rightly, extremely proud and contended to have produced such a unique and charming son. Together with Alfie's older brother Noah, they appear to be a perfect family.

A Doctor, confined within the traditions of a medical model of diagnosis, who has to write these reports for her job, MD FRCPC

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