This is important. It’s important if you know and love any child. But it’s crucial if you know and love a child with complex communication needs (CCN). If you’re looking for a summer goal for your children or students who are using augmentative and alternative communication (AAC), this would be a good one.
A couple of weeks ago, I was working with a student in her home. We had been working on a Father’s Day project for a portion of a few sessions.
We used predictable chart writing with the stem “I like when my dad…” Then I found pictures based on her answers so that we could put them together in a book. On this day, it was time to put the book together. It was the last time I was going to see her before Father’s Day.
BUT…and this is the important part:
When I said, “Let’s put the book together for Daddy!” my 4-year-old medically complex student with emerging verbal skills said, “No. I don’t want to.” Calmly and as clear as could be. With direct eye contact. Like she said it all the time.
But she doesn’t say it all the time.
I tried to stay cool and casually said, “Oh. Okay.” But her nurse’s eyes were wide with amazement and excitement, and I felt it too. So I said, “I’m so glad you told me that!” She looked up and smiled.
My little student was playing with orbeez (the tiny balls that you put in water and they grow and feel kind of slimy, smooth, wet, and cold). She didn’t want to stop what she was doing. My agenda and impending Father’s Day wasn’t her priority.
So I asked her slightly older sister to put it together for their dad. And she happily obliged.
We played with orbeez.
One of the most important things you can teach a child with complex communication needs is refusal. I’d been modeling it for months. Every time it looked like she wasn’t excited about my plans for the session, I’d model some variation of “No.” “No. Not that.” “No thanks.” “No, I don’t want to.”
The week before that, she turned her head away from me, and I modeled “go away!” and moved about 5 feet away from her. She looked at me with amusement then said it again, and I moved farther away.
Last week, as soon as I walked in, her smiled beaming, she pointed her finger and said, “Go away!” I immediately ducked out of her sight. Her mom looked shocked and said, “Be nice to Heidi!” until I said, “We’ve been working on it. She’s controlling her space.”
There are so many times when a child with complex medical needs doesn’t have a choice. Necessary procedures and tests are often uncomfortable or scary. Dietary restrictions remove food options. Medicine has to be taken. It all HAS to be done or there are potentially fatal medical consequences. There is no room for negotiation.
But she doesn’t have to glue pictures in a book.
When we give our children with CCN the right to refuse the little things, we build the foundation for them to refuse the more serious things. We protect them from compliance. Here are some suggestions to foster your child/client’s refusal skills:
Model refusal even if you don’t think they’re “ready.”
We talk a lot about the importance of core vocabulary and having a robust language system. We talk about teaching our children/students various functions of communication. But the communication functions don’t have to be introduced in order from requesting to labeling to commenting…They can overlap. When a student requests chips, you can give them the chips and model, “you WANT CHIPS NOT PRETZELS.”
Make sure they have a way to express refusal.
If they’re using AAC, be sure they have access to refusal vocabulary (stop, don’t, no, not, go away). Model the nonverbal communication as well. Push the pretzels away. Shake your head “no.”
This is a good opportunity to add and model some pre-programmed phrases or sentences as well. Give them an assertive way to quickly refuse something with some polite options…and some stronger options. Sure you can say, “No, thank you,” when someone offers you something you don’t want. However, for situations that call for something stronger, “I said no!” or “Get away from me!” may be necessary. Give them a way to be strong and assertive and then work on teaching social etiquette.
We want our children to be sweet and polite, but more importantly, we want them to be strong and safe.
Reinforce refusal
Don’t expect a performance without practice. When children are going to perform, we give them a chance to rehearse on stage and practice their lines. There are dress rehearsals so that the performance feels familiar. Give your AAC learners a safe time and place to practice their “lines” so that when they need them in real life, they’re prepared. Make sure they know what’s supposed to happen when they say “no.”
When a child refuses something that isn’t crucial to his/her survival or safety, reinforce it. Missing an art project won’t make or break a child’s educational experience.
Validate refusal, even when it’s not an option.
When an activity has to be done, acknowledge that they don’t want to do it and give choices when you can. For example, “I know you don’t want to work. We have to do counting or reading and then we can play. Do you want to do counting or reading?”
If your child/student gets upset, and you think they may be having comprehension issues, modeling and/or First/Then visuals may be helpful along with your explanation.
Be vigilant
Teaching refusal may take a lot of modeling, reinforcing, and explaining. Do it anyway. Once your children get it, they’ll really get it. They may even overuse it. But when they need to be able to say, “I don’t want to,” you won’t regret that you taught them to be assertive.
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