Down syndrome from a father's perspective.

Down syndrome, speech delay, and remembering to enjoy the moment.

Down syndrome has been a blessing, I love having Treyton and I cannot imagine him any other way. When I think of the disability I see his beautiful face. Do not give me too much credit for this attitude because a person’s personality has a lot to do with how s/he handles such a diagnosis. I don’t usually spend a lot of time focusing on the negative side of things, not because I make some noble choice but more because that is just me. Yet, I can attest to the wisdom in the statement that raising a child with Down syndrome involves higher “highs” and lower “lows” than you get with other kids.

A low point

It was a busy weekend for us. It was a busy weekend for us that was preceded by a crazy week. Last week we had one kid home sick all week while the other three went back to school. At work I started the week preparing to go out-of-town for business, went out-of-town, and then recovered from being out-of-town. Then Leigh Ann ended up in the hospital overnight because of some chest pains she had been fighting and finally decided to get checked out. She returned home in just enough time for me to pick up the baby sitter so the two of us could fulfill some of our responsibilities at that weekend’s swim meet.

The swim meet lasted all three days (Friday night, Saturday, and Sunday) so it pretty much engulfed our entire weekend. My parents helped us out watching the kids when Leigh was in the hospital as well as Sunday when we were at the pool (I don’t want to take that help for granted). But by the time Monday came around I was exhausted and I know Leigh was as well.

When I got home from work Monday night Leigh was gone to her exercise class and Bailey was there chomping at the bit for me to take her and the dog to puppy obedience class. Lindyn had been wanting to go but was sick so she was going as well. And, when I get home from work Treyton becomes my shadow so the four of us climbed into the car along with our Irish Setter, Beckett. We carefully made our way to the pet store through the near whiteout conditions.

When I finally sat down to eat I was not alone, Treyton demanded to be on my lap as I ate. He was not his normal happy self. Trey is fighting a bad cold and he has not been that nice. In fact, the kid has been stinking crabby. As I sat there balancing him and trying to eat I remembered that I had an appointment reminder pop up on my computer – Treyton had to see the endocrinologist on Tuesday. As I mentioned that to Leigh Ann she was confused because she did not think he had an appointment but at the same time she remembered that he did have an appointment that day, which she forgot about, with the ear, nose, and throat specialist.

This was a low point for me. I am sure a lot has to do with fatigue but I can say that it has been a long time since work has been something other than a daily struggle. It seems like there is always something that needs to be fixed on the house. I would love to take a vacation but that requires both cash and a schedule that would allow for it. We are short on both. Like I said, I don’t spend a lot of time dwelling on the negative but at that moment all I could think was, “Damn, this shit sucks.”

It could be worse

Leigh Ann said it herself and we both know that for a kid with Down syndrome, Treyton has been blessed with good health. But there is no way around the fact that there is a lot more to raising him than there was for our three girls when they were his age. And the fact that it could be worse doesn’t help you unless you are in the right state of mind to reflect and appreciate that fact.

The truth in the statement that it could be worse does not change the fact that it is probably one of the worst things you could tell a person that is struggling with something. Trust me, we have had people say that to us and all it did was piss me off – it sure didn’t help. In fact after the fact all I could think was that the person that made the statement doesn’t have a clue about what we deal with so even if it was true they didn’t know it.

It is just like pain tolerance. Some people can handle a lot more pain than others. I remember the time I smashed the thumb of one of Leigh Ann’s uncles with a sledge-hammer. I saw the blood squirt out both sides but all he did was hold his thumb and calmly say, “Wow, that hurts.” I would have been cussing and jumping up and down or something because my pain tolerance is not as high as his. The damage is the same whether you perceive the pain or not, it is about perception. So when a person is overwhelmed with the reality of raising a child with a disability it is about what they are perceiving and not what another person perceives.

It is like Swiss Cheese

Thankfully I can count on the upside of Down syndrome when I feel like I am in the pit of life. But this life is not for those with weak stomaches, the extremes are as real as any roller coaster I have been on. Along with the general life struggles like I just described we have been struggling with Treyton’s speech. Several people have told Leigh Ann and me that if Treyton were able to speak like other kids his age you would not be able to tell he had Down syndrome. What they are saying is that he is “all there.” The kid is smart and has already forced people to rethink what they had previously thought about kids with Down syndrome. Yet, we are ready for speech to be Treyton’s primary form of communication. The language struggles that Treyton has is an example of how raising a child with Down syndrome involves lower “lows” and higher “highs” than raising other kids.

Down syndrome is a disability that can have a completely different impact from one person to the next. In fact there is a long list of characteristics that can accompany the diagnosis; the cognitive issue is the only marker common across all individuals with Down syndrome. Yet, even the level of cognitive delay varies from person to person. One therapist explained it to me by using the analogy of Swiss cheese. Like the random holes in the cheese, the cognitive effects of Down syndrome have different sizes and depths. Some areas of functioning are what we would consider typical and then others show deficits. For Treyton, his ability to use speech to communicate seems to be one of those areas that would be represented by one of the holes in the cheese.

I have said it before and I am sure I will say it again, sign language is a great choice for any baby. We chose to work on sign language with Treyton primarily because of the Down syndrome diagnosis but now that I see the value of teaching your baby sign language I think any parent that chooses not to use sign with their child is crazy. I can’t imagine what it would be like if Trey didn’t have his signs. But, despite having his signs it is becoming apparent that Treyton is growing more frustrated with his inability to speak. (If you are one of those people who think sign language has delayed Treyton’s speech go slap yourself, you deserve it). Treyton has Childhood Apraxia of Speech which is a neurologically based issue that affects the ability to plan and sequence sounds for speaking. This is why there are times when Trey will shock you with random statements that are clearly spoken.

Do you want me to steal second base?

I know who I am and how my brain works. I crack myself up, a lot of times that is the only person I crack up, ask my kids. Anyway there are times when Treyton will come up to me and flash three or four signs in a row and I will chuckle to myself because it reminds me of a manager in baseball. So I will say something like, “Trey what’s up? Do you want me to steal second or do you want to put your coat and shoes on to go outside?” I think it is funny and it is one of those jokes I won’t get tired of. Sign language has helped Treyton to develop his language skills without being able to speak so he can communicate in sentences and not just single words. I have written about how he tells me not only that he wants to watch Barney but he will specify the episode as well as which snack he wants to eat while he watches it.

The other day the two of us were downstairs together. I was watching football and he was playing with his little critters. There is a tree house that goes with these little animals and Treyton will play with them for a long time, moving them around, jabbering, totally in his own world. As I watched the game on TV I heard him but didn’t pay attention. He got up and tapped my foot. As I looked at him he directed my attention to a few of the animals that he had arranged around a table in the tree house. He smiled and then gave me the signs for eat, fries, cookies, and drink. I laughed. One of the issues with him not using speech is that people underestimate him. He was using his imagination just like any other kid his age and was pretending that these little critters were having a picnic.

What is even better, the real high-note is when I repeat in words what he has just signed to me. When Treyton hears you repeat what he has signed he knows you understand him and his face lights up like nothing else in this world. You can see it in his eyes as well as his smile. He tips his head back and exclaims, “YEAHHHH!” You can’t take those moments for granted, they help you through the shit in life. It is the best and I would not trade those moments for anything.

A moment to share with you

I took Lindyn and Treyton to a women’s basketball game at Cornerstone University a couple of weeks ago. We have a friend that plays on the team and we had not had the chance to show our support yet this season. Lindyn is a great kid and fun to hang with. Treyton is as well but he also tends to be a lot more work. However, take a look at this video. He loved the experience and when things get tough it is video clips like this that help me to remember to enjoy the little moments. The clip is not much – it is just Treyton watching and clapping as they announce the players. Yet there is something powerful in it as well.

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.