Down syndrome from a father's perspective.

Down syndrome parent advocate

An extra chromosome

Having my son treated unfairly because of his disability is one of the things that I dread most for him. Having an extra chromosome is enough, that alone creates more than enough challenges for anyone.  He does not need additional obstacles placed in front of him by others.

Another type of disability

At the state swim meet this weekend I was talking with the mother of one of my daughter’s friends.  She has a son that is a freshman in high school.  He is an “A” student, stays active at school as he announces at many of the sporting events, and he is blind.  I have had the privilege of spending time with Max (not his real name).   He is a fun kid to be around.  He loves sports as well as old radio shows and can converse about most popular topics.  He never asks you to speak up and can remember what you said better than you can remember yourself.

Max did not come to the swim meet this weekend so I was asking my friend how he was doing when she explained that the last few weeks have been difficult.  Recently one of Max’s teachers decided to give a surprise test.  However, unlike with sighted students,  such a decision needs a little more planning.  In order for Max to take a test on his own the test must be transcribed into braille.  This is not normally a huge deal because there is a person on staff at the school that is trained to do the transcribing.  However, the teacher did not take the necessary steps to make this happen and instead pulled Max into the hall to take the test.  In the school hallway Max was required to stand while his teacher read the questions to him.  I don’t know about you, but I think that I would feel an extra level of stress in such a situation.  I do not think I would feel comfortable taking the time to think about my answers.  In addition to being required to stand and take the test, the teacher actually told Max that time was tight and they had to keep moving.  Max is the only student that was subjected to this type of situation.  It was not a “level playing field.”

Another frustration that Max’s mom expressed to me had to do with the practice ACT test that he had recently taken.  Two weeks before the test was scheduled my friend met with school officials to make sure that Max would be provided with a braille version of the test.  She explained to me that this was a very important detail because the style of braille used on the official ACT is not a typical type of braille.  So for Max, the practice ACT was a chance to test his knowledge as it is for all students but it was also an opportunity for him to get a little experience with this unique style of braille.  But, despite the assurances she was given, there were some parts of the test that were not in braille so they were administered to Max verbally.

Why include this in a Down syndrome blog?

Unfortunately I could share more examples of difficult situations that Max and his parents have faced.  I also do not think that this school system is unique in how it handles the special needs of its students.  I believe that we as parents of children with special needs should listen to these types of stories and file them away for future reference.  We need to be ready to, like Max’s mom and dad, stand up to make sure that the unique needs of our children are being met.  We need to make sure our kids have the opportunity to realize their potential.  Our kids rely on us for food, clothing, etc.  We need to be ready to step up and advocate for them.

I think that the vast majority of teachers and other professionals that interact with our children are in those positions because they have a desire to help our children.  They are good people.  But, even good people can get too busy or overwhelmed at times and then let some details slide.  It could be that there are some standards or guidelines that are hampering them.  Maybe they are in schools that are understaffed to begin with, I don’t know.  However, sometimes things happen for a multitude of reasons and we need to be vigilant; be involved in our kids education.  If we are able to approach these situations from the perspective that the teacher/professional involved does care about the well-being of our children we will be able to get the “job” done in such a way that is as least likely to offend as possible.

Rob Arnold has been married to his high school sweetheart for almost 19 years. Together they have three daughters and one son. He earned his bachelor's degree in General Business from Grand Valley State University as well as an MBA in Strategic Management from Davenport University. He enjoys reading, hunting, scuba diving, and spending time with his family.