Trying to determine preferences and being sure that they have made a choice (not you making it for them) is one of the toughest parts of being a communication partner with a non verbal person. Making choices with a communication partner is the topic of this episode of Transition Tuesdays with Jane and Joe
This isn’t so much of an issue with an infant, because they are at the very beginning of the communication learning process and it is easy to feel hopeful and optimistic. Except for when they are in obvious discomfort and you are trying to help ease a child’s pain.
Trail and error.
With my 20 year old son, whose communication requires an intuitive, observant and consistent partner, it still feels sometimes like I am the mama of that preemie who arrived at our home with monitors, and oxygen tanks and us trying to replace the hospital setting in our home, without the benefit of an actual hospital.
Joe was a 26-weeker and had spent the first months of his life in the safety of the NICU. Talk about feeling clueless and helpless! I would pump breastmilk and bring it to the hospital every day. I sat in the NICU after work (I was trying to save my maternity leave hours because I really didn’t get how severe Joe’s brain damage was… plus I had all these people coming up to me and telling me preemie stories about kids who grew up to be Harvard graduates and basketball stars).
It also didn’t help that everyone was overestimating the power of mother’s intuition. They were constantly looking to me for answers because I am the mama. Instinct is one thing, but it didn’t cover the amount of medical procedural knowledge I needed to be Joe’s caregiver… add in a dash of postpartum depression, and you have got one overwhelmed mama. I was not functioning as Joe’s communication partner yet.
We grew into our roles as co-communicators though. And, what is so fascinating to me about Joe is he communicates differently with different people. He watches and observes them and kind of finds his PR strategy with each person… me, his dad, his teachers, his direct support person, his grandma… A smile is his most powerful weapon.
But I digress.
Joe started receiving speech therapy through Babies Can’t Wait (Early Intervention Services for children with disabilities). I learned about reciprocal communication and was given lots of tools and games to help encourage Joe to respond to me. In addition to his delayed development, Joe was having Infantile Spasms (a kind of seizure disorder,) and so his ability to connect with me was furthur impaired.
I don’t think people realize (I know I didn’t) what a challenge that presents to a newborn and his or her family’s ability to bond. Studies show that prematurity in general has a traumatic effect on a child and the family resulting in sustained impact to the future growth and development of a child’s ability to connect with people. Kind of like PTSD in people who experience an injury or illness.
Working as a team to identify preferences, and to assist your non verbal partner in making choices is possible, though it is important to remind yourself that no communication system is perfect.
Here are a few tips from my lived experiences working with Joe and families of other children with disabilities.
WATCH, TEST, REPEAT
Take some time to identify preferences for simple every day things, foods, sounds, music, etc. You probably already understand the body language and cues of the person you are partnering with. Ask simple two choice questions, Yes or No… is a good place to start. Once you think you have identified a preference, then try it again and see if you get the same response. And then, try it more times and, this is really important, don’t be upset or frustrated if the answer isn’t always the same.
Why? Because people’s preferences change. Unless you are partnering with a person who must have a rigid routine, and likes the same thing, the same way every time, then a different response does not mean the person no longer likes that particular thing. After all, you may love pizza, and eat it multiple times during the week, but after a while, you might like to have something else.
Why should we assume a non verbal person wants to eat pizza every day just because he or she loves pizza?
As you work as a partner to determine your person’s preferences, it is your job to help your person try new things, and offer things you know they like. The point is to help give them as many opportunities to make choices as possible. Making choices is self determination and self determination is an essential quality for transition planning.
Here are some other tips, which are great for adults who have a brain injury and have retained some language. Read the whole article:
- Minimising distractions. Remove background noise – a television or radio can be very distracting
- Ensuring you talk directly to the person and not talk over them. Try to sit at the same level as the person, and make eye contact
- Establishing a consistent routine and environment where possible
- Gaining the person’s attention before speaking to them
- Talking about familiar topics
- Encouraging the person to communicate
- Explaining what is happening as it happens e.g. “your brother has come to visit”
- Only asking one question at a time
- Don’t change the topic of conversation suddenly – it’s much easier to talk about one topic at a time. Gently remind the person of the topic if they appear to have changed topic unexpectedly
- Taking a break if the conversation is “going round in circles”
- Keeping written reminders of important information e.g. writing key names and dates in a diary
- Use a reassuring, calm and friendly tone of voice at all times
- Use simpler language, as this can be easier to understand
- Repeat key words or phrases to help the person to understand more
- Using questions which require a yes/no response can be easier to answer for people with communication difficulties
- Facilitating choice making by giving forced alternatives (e.g. would you like tea or coffee?)
- Use visual references where possible – for example show a cup when asking whether the person requires a drink
- Use gesture to help the person to understand
- Do not expect perfect sentences / vocabulary from the person – it is enough that you have understood what they have said
- Give feedback and confirm that you have understood
- Activities like looking at photos and magazines or playing simple games are often a nice idea, and do not require any real understanding of conversation to be enjoyed.
- Allow enough time for the person to respond
Here are some resources:
Friendship Circle Blog: 23 Ways to Communicate With a Non Verbal Child
applied behavioral analysis Edu.org: 6 Strategies for Encouraging a Non Verbal Child to Communicate
spectrum news.org: Study of nonverbal autism must go beyond words
Jane Grillo is a mom constantly searching for ways to help her son Joe communicate!
Transition Tuesdays with Jane and Joe 