By Nicole Silverman, Program Coordinator
My son recently attended a community event with his personal support worker [PSW]. I arrived later, and walked in to see my son surrounded by several other children throwing a ball around with him. His PSW was standing several feet behind Benjamin, and when one of the children would ask a question about Benjamin, she would rephrase the question to him.
Child: “How come Benjamin doesn’t talk?”
PSW: “Benjamin, do you talk? Do you like playing ball with your new friends?” Benjamin clapped and waved his arms and legs in excitement.
PSW, to the child: “He is talking to you; he just uses his voice and body instead of words.”
Child: “Can Benjamin go down the slide with us?
PSW: “Why don’t you ask Benjamin?”
Child: “Benjamin, would you like to go down the slide with us?”
Benjamin claps and yells with excitement, and reaches his hands up to his PSW so she can assist him to the slide.
Next thing you know, Benjamin’s PSW is standing near the slide for safety, but Benjamin’s friends are helping him access the slide.
It hasn’t and won’t always go so smoothly…It’s taken all of us time to learn our roles and how we can best support Benjamin. Here is what I have learned and would share with other parents:
- The ultimate goal of a PSW is to work themselves out of a job. For example, when you’re out with friends and walking into the movie theater, your child’s friends can push his wheelchair or go find seats together. You don’t need a PSW in that moment because all the kids are riding/rolling into the movies together.
- No “helicopter” PSW’ing, please! It’s normal to want your child’s experience to be the best possible and avoid awkward or hurtful situations, but the truth is, letting your child figure it out as independently as possible will stretch and grow you, them, and your PSW! You will not be there for every awkward situation: start teaching your child now how they can navigate all of this on their own.
- Model how to talk to the child you are supporting. When people ask you questions instead of the person experiencing disability, it reinforces an attitude of not presuming their competence. This is a great opportunity to model the respect and dignity they deserve in being asked questions directly. (Yes, even if they cannot verbally give you an answer! Presume that they understand everything that’s being said to them.) Redirecting or rephrasing the question can take a little practice, but soon it will become habit!
- Role play with your PSW. What is their role in helping your child in community? When should they jump in, and when should they let things play out? This is an individual decision based on your child’s individual needs.
- Blend in. Even when an individual experiencing disability requires significant support, a PSW should play the role of being almost invisible. They are there to assist with support needs, but everyone should see and interact with the person experiencing disability, not the other way around.
- Ask your child. Get their input on how they would like their PSW to support them.
- Find a good fit. Whether or not they experience disability, all kids just want to belong. What does that look like for your child? What kind of PSW will help your child fit in with their peer group and naturally support them?
- It doesn’t have to be expensive. Many community places will let a PSW access the event for free: gym, movie theater, amusement park, or dance. It never hurts to ask! Remind your PSW that they are there to support your child as naturally as possible!