Down syndrome from a father's perspective.

Down syndrome, school, doubt, and parenting in real-life.

Treyton is only 4-years old and the decisions we as parents will need to make regarding his education have just begun. Yet, I can already see that these decisions are going to one of the more challenging aspects of raising a child with Down syndrome. Despite the fact that Treyton is our fourth child and we have been parents for over sixteen years already, the disability factor seems to add a level of doubt that I thought had passed.

The rookie experience.

If you are a first-time parent you can relate when I talk about doubting your parenting skills and decisions. If you’re more of a veteran parent you may have gained enough experience and confidence that your old friend doubt doesn’t come around as much anymore so try to think back and get a feel for what I am saying. Prior to Treyton’s birth and the introduction of cognitive disability to our equation we had been moving along pretty smoothly and confidently.

As I wrote a couple of months ago we decided to send Treyton to both a special education preschool and a typical preschool. We’re splitting time between the schools because we don’t want to swamp the kid; on the days that he goes to his “typical” preschool in the morning he does not go to his other preschool in the afternoon. Last week both schools had special activities so at times it seemed like our plan was backfiring but we did get a good opportunity to see him in both environments.

Due diligence.

The choice to send Trey to both schools was not made lightly. Last year he went to school the entire year in our district’s early childhood special education (ECSE) program. It was a good experience allowing him to grow and develop. Toward the end of the year his teacher expressed to us that Treyton would benefit from being surrounded by kids whom could provide good models for him to imitate. We weren’t to surprised but it was nice to have the confirmation from a professional. As is often the case with Down syndrome, Treyton still had areas of deficiency that merited continued involvement in the special education program (speech therapy being a big one) so we went for a hybrid approach.treyt-school-picture

Prior to the end of school last year my beautiful and diligent wife began inquiring about the new school. After she expressed interest the school sent a person to evaluate Treyton in his special education classroom so they could get a feel for his chances of success in that new environment. I don’t recall getting a summary of the evaluator’s notes but it was determined that Treyton had the option to attend the typical preschool. The “typical” preschool that we sent Treyton to is at a private school with a very good reputation for inclusive education all the way through the 8th grade which is the highest grade at the school.

A couple of weeks ago, just before the start of school, I had the chance to talk to Mrs. D, Treyton’s teacher at his new school. I learned that part of the reason they had such a good reputation for inclusive education was that they had a strong resource-learning staff and Treyton would be sharing a special aid (as needed) with a friend of his that also has Down syndrome but would be in a different classroom. That conversation put me at ease about Trey starting the new school. Not because of the aid but more because they acted excited to have him and had put some thought into what it would take for him to succeed in that classroom.

Staying informed but not hovering.

As Treyton began school this year we had the option to feel at peace knowing that  we did everything possible to ensure that he would be in environments that provided him the opportunity to learn, grow, and experience success. At least we were pretty sure we had done everything we could and we were pretty sure it was the right mix of growth opportunity and success. We did everything we could, didn’t we?

If you are familiar with Love and Logic parenting you about “Helicopter Parents”. It’s a parent that is always hovering around their child so he will never feel any negative effects resulting from wrong choices or irresponsible behavior. An example of a helicopter parent is one that swoops into the rescue every time their kid forgets to bring his lunch to school. Instead of letting the child experience mild hunger pains once or twice and learn the consequence of being irresponsible the parent will bring the kid his lunch time and time again depriving the child of the opportunity to learn.

I am not a helicopter parent and tend more toward the side of being a “Drill Sergeant Parent” which has its own problems. However, I want to point out that there is a difference in being involved and staying informed about what happens at school and hovering. My wife does an amazing job of talking to the teachers and classroom helpers about Treyton on a daily basis. She is not hovering at all and is willing to swallow her own maternal instincts to allow Treyton to learn important lessons if that will be best for him.

The fact that Treyton is still non-verbal makes it a lot more complicated and difficult for us to get a good “read” on his perspective of how school is going. We ask him about things we know he is doing at school as well as if he wants to go to school and try to judge from his responses how he is feeling about it. We can get a bit of an indication but the process involves a lot of inference so there is always a lot of doubt as well. Leigh Ann will use the few minutes she has as she is dropping Treyton off to talk to the teachers and see him interact and does the same when she picks him up. I am very thankful for her diligence in this area.

A closer look.

Last Monday night was “Dad’s Night” at Treyton’s “typical” preschool. I love things like this because I get the chance to see him do his own thing in his own world. The evening was fairly unstructured and provided the opportunity for the dads (or other special person) to spend time doing different activities with the child. These activities ranged from coloring and crafts to playing with toys and reading books.

I am usually in a zone when I am with Treyton but for some reason I had the sense that we were being watched a little more than usual. I am pretty sure part of this feeling had to do with the fact that I was very aware that Treyton was the only kid with diagnosed special needs so I felt like the other dads were probably aware that there was a kid with Down syndrome in the class and may be curious. During the evening I heard more than one of Treyton’s classmates say to their dad, “That’s my friend Treyton.”

trey slide

The very next day Treyton was the “Star of the Day” which involved a number of things for him during the class period but also meant that Leigh Ann had to be the parent helper and was able to spend the entire morning in the classroom. She told me that Trey didn’t have an issue grasping the concepts and did great with the “academic” stuff but that he lacked a little self-control. There were a couple of girls playing with the blocks and Treyton kept trying to knock them down. He certainly does have a difficult time fighting those types of urges but I am not sure that is a result of the extra-chromosome. To be fair, he was born into a family where both parents and all three siblings have been diagnosed with at least one type of ADD (I happen to be a combo of both hyperactive and inattentive ADD).

A couple of days later Treyton had a Halloween party at  his ECSE school so Leigh Ann was able to get a feel for that environment and make a comparison (we were already familiar with that school but having the two events so close together did provide a unique opportunity). It was Leigh Ann’s observations from this party that lead to a number of conversations the two of us had about the right place for our boy. Nothing is easy. Our old-friend doubt had come back.

What does the right fit look like?

One of the many things that is not written in the special needs parenting manual that doesn’t exist is how the parent can know they have their child in the right setting. In the regular classroom Treyton is smart enough and holds him own, however, he has some unique physical characteristics and relies on signs to communicate. In the ECSE classroom Treyton’s use of signs is pretty normal and he fits in but may not be intellectually challenged as much as he could be.

Truthfully we are pretty happy with our choices at this point but what about next year or five years from now? I don’t like the idea of Treyton being the “special” kid in the classroom but I also want to help him become the best person he can be. He deserves the opportunity to be challenged and grow. What is the balance?

I think that one of the more frustrating things for us is that with our other kids it seemed like the path was clear. They are typical kids so there future is certain.

WHOOP! There it is!

That’s what hit me as we talked about this. I think we (that is a collective “WE” as in parents in general) think the future is certain for our typical kids. They’re just like us so they will follow a relatively similar path as we did and turn out a lot like us. I don’t know that this is the only reason we struggle but I think it is a big part of it. This is false logic.

The other side of this is that when the doctor tells you that your child has a disability and will require special help we think that it means their future is less certain than kids that don’t need that help. I like the perspective that George Estreich gives in his book The Shape of the Eye. Estreich points out that when you have a child diagnosed with special needs you are actually a step ahead because all kids have unique needs but we just have not discovered what they are for most kids.

Tomorrow and the next day and the next and the next……

Having a child with Down syndrome has helped Leigh Ann and me see some things we would have missed a few years ago as well as seeing things from a different perspective – it has also added a level of concern and worry we didn’t know before. There is a lot to think about for parents of kids with Down syndrome or any type of diagnosed special needs.

As we move forward I can see that it is going to be key to avoid looking too far out into the future. Despite what we tell ourselves there isn’t much we can truly control and even though we have tricked ourselves into thinking typical kids have certain futures the reality is that no one does. There isn’t anything wrong with planning for the future but if that planning begins to overwhelm and drown out the ability to enjoy the present there is an issue. We don’t need to have all of the answers now, we will work it out, together.

  1. Joel Kallman

    Great post!

  2. Pingback: Down syndrome adds a level of peril to life’s decisions. | Treyton's Posse