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When I read this week's chapter on prenatal atypical development, I was thrown back to
high school biology - to topics I was sure I would never need to address again. Dominant
and recessive genes, DNA (and, might I add, I was quite pleased I still remembered how
to pronounce the entire word!), life cycles, etc. . . wow! I thought I had left that way
behind. For some of you, it has been years since you took Child Growth and Development.
However, remember - we have to first understand what typical development is so that we more
easily spot atypical development. As you read chapter 6, you may come to realize that many
of the conditions mentioned in this chapter would be noticed before you work with a child.
Parents may have even been notified before the baby was born that there were complications.
When we lived in Portland, I had the opportunity to care for an infant that had Trisomy 18
(see http://www.trisomy18.org) which is a chromosomal defect, as is Down's Syndrome,
but in Trisomy 18, many of the babies don't even make it to term, and of those that do,
still birth is common. Maria was notified during her pregnancy that Paige had Trisomy
18, and although it was early enough to terminate, Maria never considered aborting the pregnancy.
She was hoping for at least 10 minutes with her daughter before she passed away. The doctors
expected Paige to be still born, but she survived the birth and lived for 10 months, which her
mother considered to be a blessing. During that time, I had the privilege to be a night
time caregiver for Paige so her mommy and daddy could get some sleep. Paige was in a
great deal of pain, and even though it has been many years, it seems like yesterday that
I would walk the floor with her in that little house, trying to help keep her comfortable.
At 10 months, Paige was still so small and fragile. Although it was such a challenging
time for their family, if you were to ask Maria about it now, she would tell you - I'm
so glad Paige blessed our lives.
If you are interested in watching a short video clip Paige's mom created after she passed
away, you can send me a private message. It is religious in nature and it wouldn't be
appropriate to post it here. (It doesn't add anything to the content of this class.)
Anyhoo, prior to my interactions with Paige and her family, I would have to admit that
children (and people in general) with disabilities scared me. I never really knew how to act.
Guess what! They are real people, with real needs and emotions. Knowing and loving Paige
changed my world forever.
As we interact with children and their families who have challenges, we must have compassion,
and not pity. We must have understanding, and not fear!