Down syndrome from a father's perspective.

How can medical professionals improve the perception of people with Down syndrome?

  • Treyton waiting for x-ray

The doctor’s office should not be a place of prejudice.

I just took Treyton to the doctor so he could be checked for Atlantoaxial Instability.  I was not worried about this appointment; in fact, I was looking forward to it because I like to go places with Treyton.  As we were waiting the nurse/radiologist came out can grabbed our paperwork.  A little while later she came back to get us and said, “OK, let’s give this a try.”  What did she mean “give it a try?”  In my mind it was not a matter of trying, we were there for a few x-rays so why did she not say, “let’s go get this taken care of.”  The nurse read Treyton’s chart which says he has Down syndrome so she obviously assumed that it was going to be difficult.  In her mind all kids with Down syndrome must be difficult to deal with, such a narrow, small-minded perspective.

Atlantoaxial Instability – part of life with Down syndrome

One of the milestones for a kid with Down syndrome is being checked for Atlantoaxial Instability(AAI) between the ages of three and four. In layman’s terms, AAI is increased movement between the first and second cervical vertebrae which is the atlantoaxial joint. AAI occurs in about 15% of kids with Down syndrome; the increased movement can lead to serious injury so kids with this condition have restrictions on the types of activities in which they can participate.

Treyton waiting for the next x-ray

Treyton looks at the light while he waits for the next x-ray.

 

 

I guess you could say that Treyton had a milestone day today. I was not at all concerned about the AAI examination. It was not going to be a big deal, just a few x-rays and then we would be on our way.  Treyton has always done well at the doctor, even when needles are involved!  The only time Trey can be a challenge is when he is restrained, he hates that! In most situations all you need to do is explain to him what is going to happen and then when he senses that I am calm he does well. That is how it went today.  Three positions of his head with three x-rays, no problems – life is good.

The life of a trailblazer

As Treyton’s dad and an advocate for individuals with Down syndrome I am ready and willing to put the effort into blazing a new path for my son.  I don’t want him to be held back by outdated perceptions held by ignorant people.  Any time a person is headed into uncharted territory it is going to take some extra effort.

Think about walking through a field of tall grass or maybe some deep snow.  The first person through needs to expend a lot more effort than the next person; each additional person that follows that path will have an increasingly easier time.  The thing I dislike in this whole deal is when that role is placed on my son; it is a role that I believe God intended for him but it is a difficult role.

I was very proud with how Treyton handled himself today.  The nurse came with the assumption that Treyton was going to be difficult but he proved her wrong.  As we left I overheard her express how much easier the process went than she had expected.  With one small act Treyton is already breaking the mold others try to force on him.

The wisdom of Forrest Gump’s Mom

It has been a while since I watched the movie but after today’s visit there were a couple of quotes from the movie Forrest Gump that popped into my head.  Both of these quotes came from Forrest’s mom as she tried to teach him about life.  The wisdom that is contained within each quote is actually quite deep for a Hollywood movie.

The first quote, “My mama always said life was like a box of chocolates. You never know what you’re gonna get.” That is the reality when I walk into a doctor’s office with Treyton. I don’t know if they will see him for the person he is or if they will focus on the diagnosis. That is why the second quote is so important, “Stupid is as stupid does.”

No one can be sure about what they encounter on a daily basis; we can hope that the good experiences outnumber the bad experiences but there isn’t a guarantee. The only thing a person can control is how s/he responds to each situation. The world is full of stupid people; people with negative, oppressive stereotypes. We have a choice to make. Are we going to let another person pull us down or are we going to rise above and blaze that path. I wish it wasn’t a lesson I would have to teach but this is what I am already trying to teach Treyton.

If you know of anyone that is involved in the medical professions please encourage them to see each person as a unique individual. Don’t let them focus on a certain diagnosis. My kid is Treyton Scott Arnold. He likes Big Bird and Mr. Snuffleupagus. He can read, uses sign language to communicate, and he is easy to deal with at the doctor’s office.

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.