In chapter two, Wyllie goes over the historical treatment of people with Down syndrome. She talks about forced sterilization, institutionalization, and eugenics. She includes an excerpt from a letter from her brother who was a doctor. In it he says “May I suggest that you enjoy his presence as much as you find possible and see how the three of you get on with each other.” This support must have bolstered the Wyllie’s confidence in their decision to keep Andy at home.
Did you get support from your family when you received your diagnosis or mostly pity?
Wyllie also introduces us to two other families whose children were born 15 and 20 years after Andy. She does this to show the difference in support readily available to families over the years.
Did you receive systemic support from the hospital or local support group?
Lynn Rodriguez heard advice similar to that given by Wyllie’s brother from a nurse who had a child with Down syndrome: “For the first year, just remember that this baby is just like any other baby; learn to know her and lover her.”
Did anyone say these words to you? How important do you think it is to concentrate on getting to know your infant before you start trying to deal with all that Down syndrome entails?
Both families were asked if they intended to keep their child. The question seems ridiculous now, but in 1959, and even 1994 when the Rodriguez baby, Blair, was born it was routine. Wyllie speculates that today, instead of putting children in institutions, parents are faced with the decision on whether to abort their child with Down syndrome when prenatal testing is done.
What are your thoughts about this comparison?
Very nicely summarized. Looking back at how families had to cope with so little help should help today’s families appreciate the information and support that they receive. But as stated the most important thing is to bond with your child. Some parents can be overwhelmed with the many servives recommended to them.
Thank you! Yes, it’s easy to get overwhelmed with “what ifs” and trying to learn all there is to know in the early weeks.