Learning to Communicate Better With My Son With Down Syndrome

The Aha Moment of Stepping into the Tub

It seems like a simple thing, stepping into the tub. But for years now my son refused to do it. Almost like trying to push Scooby-Doo through a door, he’d always insist on putting both feet on the edge of the tub.

He’ll stand up straight, then lean into the tub. I would’ve bet money he was doing it just to climb the tub. Then getting out he’d either step up and jump off the tub, while I hold him or he’d grab my arms and I’d lift him over. It really seemed like a game for him.

During his IEP my wife asked about this behavior and two of his therapists started offering suggestions. Have him put one foot in the tub and lift the other over. Start setting up a bar for him to start practicing stepping over things. I thought, “Nah, he’s just being a turd.”

Next bath time, I do as they suggested. I helped him lift one leg over and supported him while he lifted his other foot over. I can’t describe the look of excitement and pride that washed over him. The same thing happened when it was time to get out. He was happy to have learned a new skill. That’s when I started to change my thinking on how I’ve been approaching him.

How I Realized I Was Projecting on to My Son

It’s going to be a struggle for me to articulate this clearly. I was getting frustrated with him because I believed he was capable of something, or had shown he could execute something similar in other settings. I’ve mentioned in the past that my wife is wonderful at communicating with him.

We’ve even had discussions about how I thought maybe she was using a little too much “baby talk” with him. I’ve talked like an adult to all my children as they grew up. With our son, because he’s nonverbal, but has very strong receptive language, I gave him the benefit of the doubt that he understood me. I didn’t want to discount him or not give him the opportunity to understand me.

I’ve learned in the last few months in quarantine that I was the only person not talking to him in more direct, simpler terms. I needed to adapt my speech patterns to something that he was familiar with, giving direction and cues he understood. I was over-generalizing his abilities.

For example, just because he can climb stairs doesn’t mean he can step over the tub. That’s a different skillset and I didn’t understand that. I realized that I had been going about it wrong, not taking the time to learn how to work with him in a way that suited him best.

I was projecting expectations based on skills that I assumed were related.

Setting Up a Schedule – Sorta

During his IEP his teacher said something that stuck out to me. She said, “He comes in, looks at the schedule for the day. He studies it for a bit and then he knows how the day is going to flow.” So his teacher gave us a schedule template to print out at home for him.

We thought it was a little cartoonish so we took some photos around the house. Where he does his schoolwork, his Kindle, our bathroom, and where we eat our meals. Then we incorporated some from the teacher. Busted out the old laminator we used for his PEC cards and made a schedule of sorts.

It’s still a work in progress but he got excited when he saw it. We started with potty, breakfast, schoolwork, and then snack. He paid close attention, touched each item as we called them out. Then something magical happened. He didn’t fight to go potty, he knew that was part of the schedule.

When he asked for a snack right after lunch we rearranged the schedule. Lunch, potty, Kindle, schoolwork, and then snack. Now, if you tell him no to a snack he loses it normally, crying and all. This time, again he went potty and he didn’t ask for a snack until after his next lesson. I couldn’t believe how significant the change was. Now we’re making adjustments but it’s really making a difference.

Thin Slicing Strengths and Weaknesses

Me projecting has really overly generalized my expectations. Yes, he can eat with a fork, but it’s frustrating if the plate is flat. He needs an edge to help him pierce the food. My natural inclination is to believe, you can use a fork, use the damn fork.

I’m learning more and more that I need to really breakdown each individual action and teach them separately. We play head, shoulders, knees, and toes because he’s seen Yo Gabba Gabba sing it over and over again. I still have to remind him what “arm” is referring to. He constantly grabs his knees instead. The word arm hasn’t been reinforced.

He knows where his hair is because of showers and haircuts. During his IEP, they wanted to add to his goals teaching him about his unique body parts like his ears, nose, and elbows. I was blown away, we teach those things to toddlers. I took for granted that he just knew them. I’d get mad because I’d ask him to touch his nose and he wouldn’t. I was asking him to do something he was never taught.

Back to the snack example. I was convinced he just didn’t like to be told no. Now I’m starting to consider that his expectations need to be met before telling him “no.” Maybe it’s not that he doesn’t like being told “no,” but he doesn’t understand why we’re saying “no.”

In the past, if he asked for a snack with a sign, we’d praise him for asking appropriately. Now we’re layering in that it’s not the proper time for a snack while getting him to understand why that is.

Realizing I Could be Learning More

This whole experience has really left an impression on me. There’s a lot that I don’t know about how to help my son. Now that I know I can start learning. It’s a shame it took so long but it is what it is.

It’s not worth dwelling on the past. Now I’ll make an effort to understand the different parts of movements and the isolation of tasks. I’ll find better ways to communicate with my son on his terms, not mine. I can adjust, I just didn’t have enough exposure to the lessons that are available.

I’ll now make an effort to stop when I get angry and try to see if I’m doing something wrong. “Can I be doing something differently? What therapist or specialist can I reach out to for information?” Maybe they can point me in the right direction to get the knowledge I need to help him best.

Improving Our Relationship

I’ve seen a tangible improvement in our relationship over the last few weeks. I’ve not gotten frustrated as much as I normally do. He has been more open to me and seeking out time with me more frequently.

He gets excited when we layout the structure for his day. He lights up when he steps over the tub. My wife plays typing games and he is just smiling from ear-to-ear as he types in Dora and her image pops up. I’m hoping that I can learn to be more like my wife when it comes to interacting with our son.

Don’t get me wrong, my son and I have always had an awesome relationship. But these tensions come up when a misunderstanding occurs. If I can reduce the number of times those misunderstandings occur I think we’ll both be happier in the long run.

What have you learned recently that has helped you communicate better with your child? Tell us in the comments.