Mary is a 6-year-old child. Her mother and father, Betty and Tom, wait anxiously at a psychologist’s office. When called into the appointment room, they hear that Mary has been diagnosed with attention-deficit-disorder and autism spectrum disorder. Although Mary can use some words, is ambulatory, and has great fine motor skills, she hits herself in the head often and isn’t able to independently do any developmentally appropriate hygiene or self-care routines. Along with this news, Betty was also recently diagnosed with terminal cancer. Later that evening, Mary’s parents discuss the next steps of how they can make sure she will be independent after Betty passes. This is a situation that every single parent fears: Will my child be able to be self-sufficient when I’m gone?
Throughout their lives, children learn certain skills to navigate the world. As they grow older, these skills become more complex and involve cooperating with others. Maybe your child has motor deficits or language deficits. Maybe they are behind developmentally or have emotional behavioral difficulties. Perhaps they just need some tutoring support in certain areas. Regardless of the roadblocks they may have, they still will become adults. As parents, we want to see our children succeed in adulthood in many areas. Self-care is one of the most important aspects of this, whether it is advocating for themselves, doing chores, or having healthy hygiene routines. When we think of self-care skills, we think of autonomy. One day our children will be on their own, and we want them to be as independent as possible including maintaining their own dignity. We don’t want them to have to rely on family members or people we don’t even know just to live. This is why teaching self-care skills is so critical, regardless of having a disability or not. The biggest question a lot of parents ask themselves is, “Where do we even start?”
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Generally, when a diagnosis is provided there will be a referral to certain specialists or therapists. For medical ambulatory needs, it could be a Physical Therapist (PT). For individuals that have sensory issues, it could be an Occupational Therapist (OT). For language deficits, a Speech and Language Pathologist (SLP). For destructive or dangerous behaviors, a Behavior Analyst (BA). Depending on the need, it could be a combination of multiple specialists. Another thing that parents probably want to better understand is if their child can’t do it or, has the ability but just refuses to. For example, if it’s a “can’t do”, an SLP or OT may be appropriate. If it’s a “won’t do”, perhaps a BA will be a good place to start. During this process, the specialists will complete their own evaluations to get an idea of what the child can do at that time. They are expected to go over the results for the parents, discuss potential goals to work on, and how these skills will be taught.
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Some questions parents need to ask to these specialists are, “Where should my child actually be developmentally right now?” [3] and “What are the main categories of self-care skills that we need to work on?” Although this is not an inclusive list, some things do come to mind when considering what these categories could be. Things like hygiene (e.g., tooth-brushing), personal care skills (e.g., eating), or advocating for one’s needs or rights (e.g., asking for support, saying no) are all a part of self-care. Parents need to consistently communicate with the specialists they work with to find out where their child is at developmentally. Consistent teaching and evaluation are critical to making sure that progress is being made in these areas.
From the perspective of a behavior analyst, there are some general things parents can do here and now to help their child with self-care skills including using visual supports, social stories, “modeling”, or physical guidance.
- Visual supports can be very helpful when going through a self-care task or routine. They can act as a list that provides step by step [4] instructions for navigating through a task. They can also look like a visual schedule [5], where the child can see what their day may look like. Therapy providers can also help develop individualized visual supports for a child.
- Social stories combined with rewards are also a great visual support that add more of a personal touch. This can be helpful for life events that are difficult to describe, like a loved one dying [6] or going through puberty [7]. Social stories model in a book or story format instead of a checklist format. Parents can use pictures of their children or even download applications on their preferred technology (e.g., phone, tablet).
- If your child imitates you easily, you can use modeling [8] as a strategy. This involves the parent “acting out” or physically showing the child how to actually do the task. For example, the parent can show their child how to squeeze a bottle of shampoo. This strategy is just a part of what is called “Behavior Skills Training”. If you are wanting to use BST, we recommend discussing this strategy with a therapy provider because of the number of steps involved.
- Another strategy that is sometimes used is graduated (or physical) guidance. A parent can use this strategy if their child is not learning through other methods. Parents generally will place their hand over the child’s hand and move them through the expected motions.
Mary’s parents decide to begin her skills building journey by taking her to a speech pathologist and behavior analyst. The separate providers complete their own evaluations and set up the goals they think she needs. At this point, Betty has only a few months left and is not able to physically participate in the strategies to help Mary work on her determined goals. The good news is that Betty has set up monthly collaboration meetings between Tom and all of the specialists. Her therapy providers are working with her weekly, and Betty can see her child learning to be more independent. It gives Betty relief knowing that there is a team dedicated to her daughter’s learning.
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Teaching skills to our children can look different in each family, and because of this, many parents going through this feel like they are on island. You are not alone, and there are several online and local community support groups to share ideas and resources including Parenting Special Needs “Family Chats” [10]. By using these strategies in combination and with the support of therapy providers, we can help our children gain the tools they need in their own journey of life. It’s a hard reality for us knowing that one day we won’t be there to help our children. Teaching the skills they need with our support today can ensure their independence tomorrow.
About Author Holly Downs
Holly is the Director of Ethical Compliance at PBS Corp [11]. and an instructor at Capella University. She is a certified behavior analyst with over a decade of experience in various populations
Helpful Articles
- Puberty and Hygiene: How to Support Our Children [12]
- A Complete Guide on Dental Care for Children with Special Needs [13]
- 4 Features of Total Fitness: The Foundations of Better Living [14]
- Sex Education: Teaching the most vulnerable [15]
- Sex Education for Special Needs Children [16]
- The Importance of Teaching Children Body Safety [17]
- Family Chat: S.O.S.: Prioritizing Self-Care [18]
- Self-Care [19]
This post originally appeared on our March/April 2022 Magazine [20]