Down syndrome from a father's perspective.

Down syndrome and the start of a new school year.

As a parent to a child with Down syndrome I want my son to be seen as the unique person he is and not the diagnosis forced upon him. I believe that in order for others to see my son first I must lead by example; if I focus on the diagnosis why would I expect others to be any different? However, the end of the summer can be a challenge for a parent like me. This is the time of year when a lot of focus is placed on the fact that Treyton has Trisomy 21; it is the beginning of a new school year.

Previous statement on parenting.

In the July 13, 2013 post entitled, “Down syndrome and parenting, what’s it like?” I try to show you that raising a child with Down syndrome is very similar to raising any child; the idea is that every child has their own unique needs that parents must meet. My position has not changed but there are some details that could be added.

For example, after reading that post my beautiful wife expressed her opinion that the workload may be a little heavier with a child that has Down syndrome. Being a gifted “devil’s advocate” I pointed out that this depends on the other kids as much as it does the child with Down syndrome. Also, we had three girls before Treyton, our only boy. Our girls were active but Treyton has raised the bar! Is that because he is a boy? Is that because he has Down syndrome? I don’t know. I think my wife is generally correct about the workload but I don’t see a lot of value attributing this or that to this or that cause. The reality is that as a parent you are going to do what it takes to be the best parent to your child not matter what.

School is another area that may be unique for a parent. Again based on my position of similarity, I have four children that all learn differently. We are in contact with some teachers more than others and need to provide more help for this child than that child. So the fact that Treyton has unique educational needs is not different, but it kind of is.

Double-barrel approach.

Hunting season is getting close so when I think of a two-way approach I think about a shotgun. Treyton is beginning his second year in the Early Childhood Special Education (ECSE) program offered in our school district. We had a great experience with his teacher last year so we are sad that he is moving on to a different teacher but it is still a pretty comfortable feeling. However, we have also enrolled Treyton is a “typical” preschool through a local Christian school.

So I guess we are kind of mainstreaming Treyton. Three afternoons a week Treyton will be in his ECSE classroom and then two morning each week he will be in a typical preschool classroom. His mom and I know that Treyton is a smart kid and his teacher from last year agreed with us and suggested that he would do well in a typical class. She said that Trey is such a mimic and into copying others that it would be good for him to have typically developing kids to mimic. I have no doubt that he can handle it cognitively, my concerns are all based in is lack of speech.

Needless to say, as I sat in the parent meeting the other night for Treyton’s non-ECSE class I was a little uneasy. It’s not that I doubt my kid’s abilities, I don’t. That kick-ass kid can hold his own. BUT, it would just be that much easier for me if he would communicate with speech and not signs. I love signs but the problem is that his signs are a combination of ASL, Baby Signs, and what I call Treytonese. Then as we were sitting there listening to the teacher explain what each day would entail as well as other details of this new experience for Treyton she told us a story that made me feel a little isolated.

When similarity feels different.

As I sit there I can tell Treyton is going to like this teacher – she has a lot of energy and loves kids. As she passed around different sign-up sheets and pieces of information she focused on one form where she needed the parents to fill in the first, middle, and last name of the child. This information was obviously in the child’s record but the list was to be an easy access reference for the teacher as she worked on teaching each child his or her full name. Mrs. D went on to tell how much fun this process is and how many of the kids tell her they never realized they had three names. And WHOOP there it is.

Just like every other parent in the room I was there to learn all of the details so my child could have a good experience at school. However, as each parent chuckled at the story I was reminded that my kid was the only non-verbal child in the class. It wasn’t a big deal but it did cause me to stay after the meeting to make sure I had a chance to talk with the teacher; I am glad I did. It was a good conversation.

I knew that the school was aware that Treyton had Down syndrome as well as the teacher. In fact, the school had sent a specialist to Treyton’s ECSE class the previous semester to observe him. But I wanted to get my feel for the situation so I asked her if she was ready for Treyton and what she knew about him. Mrs. D simply explained some of the resources they had available for Trey if they were needed as well as her own desire to have Treyton as a part of the class. Leigh Ann and I were able to explain some of Treyton’s signs and other types of communication. The thing that excited me the most is that we left there knowing that Treyton was not going to be viewed as an “asterisk” on the class list but Mrs. D viewed him in the same way as each of the other children. They all were unique and had special needs.

The role of struggle in education.

Last Monday morning as I drove to work (yes it was Labor Day but there was work to be done) I heard an interesting radio interview on NPR. The title of this segment of Morning Edition was “Why Eastern And Western Cultures Tackle Learning Differently“. I was caught by the role that struggle plays in education for those in an eastern culture. Take a look at this quote from that show…

In Eastern cultures, it’s just assumed that struggle is a predictable part of the learning process. Everyone is expected to struggle. And, in a way, struggling is a chance to show that you have what it takes emotionally to overcome the problem by having the strength to persist through that struggle.

When I heard this on the radio I stopped my car, grabbed my notebook, then wrote it down. There is something freeing about accepting struggle as part of the process of learning. I think there is an application of this idea for Treyton and other kids with Down syndrome. What do you think?

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.
  1. Jisun

    I think Americans have a very troubled relationship with struggle in that so much is done to erase it, when in fact I think our job as parents is to tech or children tools to engage in struggle. (Not to say that other cultures can’t be looked at with a critical lens, just talking about this one aspect of american culture that I see.) I’m so glad that he has such a great sounding teacher. :)

    • Rob Arnold

      Jisun,

      You are right, all cultures can be critiqued but given that we are living in the middle of this particular culture we have a more vested interest in it. I think there is a connection with this concept and one that I remember from discussions in business school. Our system of valuing companies on the current stock price produces a very short-termed perspective. Only looking at the short-term does not allow for long-term investments. Teaching our kids to accept struggle as a normal part of life, a part that may be difficult but good is an investment in their future. That lesson is something they will be able to apply over and over.

      As far as his teacher, she sure does seem like a good one. I am sure we will have some ups and downs but things are looking good now.

      Sincerely,

      Treyton’s Dad (Rob)

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