I Don’t Like “Welcome to Holland”
I’ve told you about my daughter, Katie, and the Article called “Welcome to Holland”. Not all parents feel the same way as the author Emily Perl Kingsley did because their experience is far different than that of Down syndrome. I thought I should include the stories on his website from Smith-Kingsmore Syndrome. Maybe you can relate to these stories better.
There are many special needs parents who feel the truth in every sentence of this essay. If the piece provides you a measure of comfort, then please hold the story close to your heart. For that reason, I’m glad this essay exists. I’m addressing you other parents who, like me, aren’t sure what to make of this “different country as special needs” analogy. If we are going through a period of calm, Jack feeling no physical or emotional pain then yes—I’m smelling the tulips, choked up by their beauty and thrilled to be in Holland instead of Italy. If I’m feeling scared and lost however, this essay mocks me with its seeming flippancy. A real-time Rorschach test for how I view Jack’s situation. Jack battling random scary health issues that he can’t verbalize does not equate to our family just moving to a different yet equally attractive European locale. It dances on my nerves in those moments precisely because it minimizes
my grief. My other gripe with the essay is that for those without special needs children, it provides a generic spin on a painful situation. That everyone may mistakenly feel they understand every special needs situation.
Read More “I Don’t like Holland“
Thank you Smith-Kingsmore Sydrome website
Smith-Kingsmore syndrome is a neurological disorder characterized by a head that is larger than normal (macrocephaly), intellectual disability, and seizures. In some people with this condition, the ability to speak is delayed or never develops. Some children with Smith-Kingsmore syndrome have features of a behavioral condition called attention-deficit/hyperactivity disorder (ADHD) or autism spectrum disorder, which is characterized by impaired communication and social interaction. Structural brain abnormalities may also be present in affected individuals. For example, one or both sides of the brain may be enlarged (hemimegalencephaly or megalencephaly) or have too many ridges on the surface (polymicrogyria), or the fluid-filled spaces near the center of the brain (ventricles) may be bigger than normal (ventriculomegaly).
READ “WELCOME TO HOLLAND”
Psalm 139:14 I will give thanks to You, because I am awesomely and wonderfully made; Wonderful are Your works, And my soul knows it very well.
Sister Kathleen Schipani: Our children are “Beautifully Broken.”
Genesis 1:27 So God created man in His own image, in the image of God He created him; male and female He created them.
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