My wife and I recently attended a conference discussing transitional higher educational plans and vocational training for teens and young adults with Down syndrome. Our son, who has Down syndrome, will be entering high school in the fall. We were eager to learn how to navigate the acronym web of government agencies and programs from which our son may avail.
One of the speakers outlined the process for applying for social security benefits. He recounted the ordeal that he bore for his son with Down syndrome, when he turned 18 years of age.
“So I called up the Social Security benefits office and applied on behalf of my son. I knew they may throw up a roadblock so I was prepared with the legal documentation. All of your children are entitled to these benefits because of their diagnosis of Down syndrome. This is a special provision of the law.” Many of us, including my wife and I, were unaware of this. We were grateful to learn of these additional avenues for assistance.
“Unfortunately, it is still an uphill battle to inform Social Security. After several minutes of my explanations and documentation, the benefits worker informed me she had to consult her supervisor. After consulting, she returned to the phone and asked me, ‘When did he get it?’ “
“Uhhh… what do you mean?”
“How long has he had this condition?”
The speaker paused as his perturbed face surveyed the sea of faces in our room, all recoiled in horror. “I couldn’t believe it!”
Shaking his head, he continued his story and told the benefits worker, “All his life. He was born with the condition.”
This incident occurred ten years ago but sadly this type of ignorance still exists, even amongst my medical colleagues. Down syndrome is not a disease. It is not something that can be transmitted. Society and medicine may label him as a disabled person. God has a different label, His child. All children of God are blessed with different gifts and God has blessed my son and others like him with an extra chromosome.
For you formed my inward parts; you knitted me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made. Wonderful are your works;
my soul knows it very well.
Psalms 139:13-14 (ESV)
When did he get it?
Praise God that my son was conceived and formed as a child of our Almighty God!
Love and trust the Lord; seek His will in your life.