Beth heard my voice and started coming down the hall. She used her arms and feet to propel her while her bottom scooted along the floor. Her severe scoliosis makes this method faster than walking. She stopped at my feet and reached for my hand. Then, she stretched back on the floor extending her legs toward me. I bent to massage her legs. Not satisfied, she led me to her rocking chair. There she sat and rocked while I massaged her back.

Beth’s story is remarkable because she wouldn’t sit still for any kind of touch nearly five years ago when we started treatments. Through patience, understanding, and a willingness to walk outside the comfort zone, massage therapists can experience similar results when working with the developmentally disabled.

Early Sessions

Beth was one of the mentally challenged clients I inherited from another massage therapist who discovered early on that working with this clientele was not a good fit for her. To say I had no idea what I was getting myself into is a huge understatement.

My initial contact with some of these clients was unnerving: One older man pushed me away saying, “Leave me alone.” Another client gagged and spit up. Then, there was Beth.

I was told by Beth’s caregivers that it might work best to go to her room and shut the door for our time together. Beth got out of her wheelchair and sat in the middle of the room on the floor. I knelt and put my hands on her shoulders. She moved two feet forward. I followed. As soon as I touched her, she moved again. This action went on for a couple of minutes. Then, Beth moved toward the closet and began pulling clothes off hangers. I closed the door and remained in front of it. It was my hope to get some shoulder work done when she returned to try opening the door. She tried. I tried. Beth turned away from me and went to the center of the room. She began taking off her clothes and I was unable to stop her. I checked the clock; 15 minutes had passed since we entered her room. My frustration was at a peak. I left the room wondering if I too would give up. I returned to the facility two weeks later. It wasn’t Beth’s turn for a massage, but I made a point of connecting with her and touching her.

I never imaged that such a rocky start would lead to a successful and growing part of my massage practice. Twenty-nine developmentally disabled people are now regular clients, and referrals from nursing staff are coming from greater and greater distances. Working with this population is a continual reminder of why I became a massage therapist. Why massage them? Because massaging the developmentally disabled can make a huge difference in their lives. The following are examples of successful sessions.

Range of Motion

Encouraged by touch, range of motion (ROM) improvements can be made to long-held contractures, as evidenced by Carol, who came to me four years ago. All her limbs exhibited varying degrees of contraction. Her legs were capable of active extension and flexion, but her elbows were in flexion contraction. Her right elbow could be passively moved 60°–80° of extension; her left elbow opened passively to 120°. Carol responded well to verbal and visual prompts. Requests for a high five with an extended arm became part of her treatment. Carol responded by extending her right arm at both shoulder and elbow. Sports massage techniques were later integrated into her treatments. This included palpation of both agonist and antagonist muscles in her upper arm and forearm, plus soft-tissue release and modified proprioceptive neuromuscular facilitation (PNF) stretches used to release tension. More active ROM was the result immediately following each treatment. After two years of monthly, half-hour sessions, results were increasingly measurable. Today, Carol passively moves her right elbow into neutral position. Her right elbow actively maintains 20°–40° immediately following a treatment. Her left elbow passively opens to 100°. Passively increasing 40° in left elbow extension seemed impossible five years ago. When Carol sees me at her home, she giggles and begins to give me a high five. 

Behavior

Improving ROM is a small percentage of work done with developmentally disabled clients. Many in this population exhibit behavior problems. The most severe is self-injurious behavior (SIB). The activity is performed without thought, like nail biting. The problem can be attributed to neurological development and may be triggered by physical or emotional pain. It can manifest as scratching, picking, gouging, hair pulling, biting, or head banging. To curb this behavior, many occupational therapists suggest a sensory diet or some form of sensory integration, (see Sensory Diet, right) As massage therapists, we offer an abundance of sensory input for our clients that can contribute to altering behavior patterns.

Tom’s behaviors consisted of yelling, jumping, pulling, pushing, and throwing himself. After noting that weighted lap blankets caused agitation and continuous verbal noise, his occupational therapist suggested massage therapy. Treatments started at twice monthly sessions of 15 minutes. After one year, our sessions were increased to 30 minutes. Tom liked his head, neck, and shoulders held with compressions. Encompassing arms and hands was tolerated. Yet, many sessions consisted of hand-holding, while rocking on a porch swing. Tom’s behavior dictated how each session progressed. One day, while Tom sat aggressively rocking, his care review was taking place nearby. I announced my presence and purpose (Tom is also blind). One of the participants in Tom’s care discussion turned to me and said, “Good luck with that [referring to massage]. He has touch issues. Especially his hands.” Five minutes later, Tom slowed his rocking and calmly sat while I worked his neck and shoulders. The same person turned in amazement: “What a difference—and without medication.”

When Beth started receiving massage treatments, she banged her head against the walls and floor. At the time, Beth’s doses of Risperdal were changing to curb her injurious behaviors. She also obtained a helmet to protect herself. In two months, her medication was stabilized. Our treatment sessions gradually became longer intervals of mostly back compressions and rocking. After three years, a major breakthrough occurred. Beth saw me enter the facility and got out of her rocking chair and into her wheelchair. She rolled past me and then looked back to see that I was behind her. She stopped her chair at her bedside and crawled on top. She waited for me to sit next to her. That day, our session lasted 40 minutes. During the treatment, Beth smiled and raised her arms to express celebration. She sat close to me and at one point put her head in my lap. “Wow, progress,” concluded my notes. Beth and I have worked together five and a half years. She accepts shoulder and joint compressions well, and she enjoys the encompassing of her limbs. Some sessions are more successful than others. A continuous, 30-minute treatment is usually possible. Beth’s nurse reported the positive effects from massage: “Beth is very calm after a massage. She will sit quietly and rock gently. Beth has a history of self-injurious and self-stimulating behaviors. These behaviors decrease after a massage and the effect usually lasts for several hours.” Today, Beth rarely wears her helmet and she frequently is seen quietly rocking in her chair.

Dramatic results occur over time, but each session improves the client’s quality of life. The therapist benefits as well, as each session produces smiles and hugs from clients and the knowledge of having genuinely made a difference. 

Therapist Training

If you’re considering working with the developmentally disabled, any doubt can be eased by a visit to a care facility. Touch and visit the residents. Make sure this work is right for you. Are you ready to try something different? The first step in exploring this addition to your massage practice is making a solid self-assessment. The work is demanding physically, spiritually, and emotionally; practicing good self-care is important.

Second, consider receiving additional training to augment what was learned in massage school. Techniques learned in massage school need to be adapted for this population. If your education included reflexology, here is a golden opportunity to use that training, as reflexology may be one of the best methods to reach this population. Many verbal clients talk about their foot rubs. Additional training in hospice massage, Compassionate Touch, or Healing Touch could be beneficial. One of the best sources of information comes from Mary Kathleen Rose. Her Comfort Touch work offers techniques that, although designed for the elderly and ill, apply magnificently to the disabled population. (See “The Principles of Comfort Touch,” page 44.)

Broad contact pressure, encompassing joint or limb movement, and holding (allowing the calming warmth of our hands to penetrate deep into tissue) are frequently used Comfort Touch strokes. Wrapping both your hands around the clients’ limbs, with a pressure of 2–5 pounds, is typically welcomed. It also provides important client connection for the therapist. Effleurage can be overstimulating. Yet, there are clients who thoroughly enjoy what I call “The Shimmy”—brisk friction done with alternating hands. The stroke works the limbs, distal to proximal.

Whatever strokes are used, think of your hands as an extension of your heart, fill them with compassion, and sink into the tissue. Touch is best when focused and firm. The work is not Swedish massage, and it is not working bodies on a table. Your clients will typically be clothed; some will be in hospital beds, others in wheelchairs with feeding tubes, and others in regular chairs. The treatment setting for the same client can vary with each session. The massage therapist needs to adapt to each client’s needs and comfort. One of Tom’s sessions, for example, was performed as a standing, swaying dance while his upper body was being encompassed and compressed.

The Session           

Generally, treatment sessions are 30 minutes, but your time together is determined by the client. Some will tell you they are finished by handing back a lotion bottle or pushing your hand away. You may resume treatment later, but if not, realize that your next visit could be completely different. Making clients feel safe and secure contributes to a session’s success. It is best to visit clients in their care facilities or homes, as this increases their comfort level.

To augment treatments, the therapist might consider using lotions. Clients like the feel and smell of lotion. Essential oils blended with emollient lotion are preferable. Training in aromatherapy prior to mixing and blending oils is critical. You may want to try different blends or single note scents. Use only one scent during a session so you can isolate the response. Carefully record all responses for future treatments and remember that clients can respond differently to the same scent.

Although many clients may be nonverbal, they can communicate. Therapists should watch clients for subtle reactions. Rely on facial expressions, gestures, body language, vocalizations, plus your instincts. Think of how toddlers are able to communicate and apply those same principles. It is important to record what is done and how the client responds. The therapist should note scent and stroke usage, plus how the client responds to each. It also can be helpful to record the client’s mood before, during, and after each session. Reactions can vary from session to session. If the client is tired, stressed, or hungry, it can alter their sensitivities and tolerance to touch. By keeping accurate notes, you can help adjust the session to be client-specific, as well as increase positive outcomes.

Marketing

How do you find clients for this niche? Occupational therapists, both in the private sector and in public schools, know who could benefit from massage. The nursing staff in care facilities for the developmentally disabled is another source for referrals. Prepare information about yourself, your practice, and what you can do to benefit developmentally disabled care. Then, start networking. Be persistent. Remember, there are policies in place to protect this population. Approval for massage therapy has to go through many hands involved in client care.

While you wait for approval, prepare consent and intake forms. Your intake form should include medications, conditions, and behaviors to be modified. Learn what acceptable behavior is and how the staff discourages inappropriate behavior. What you do as a therapist should improve behaviors, not contradict programs that are in place. Establish fees for your service. Rates for an off-site 30-minute visit could be the same as an in-office 30-minute visit. Generally, payment is made from the individual’s account. Massage is considered a personal need, like a haircut. Lastly, assess your office schedule to determine suitable periods out of the office. Clients have day activities or work, so sessions typically take place in the afternoon prior to dinner. Adhere to whatever schedules and policies are in place. Remember that regularity and intent are as important as the massage provided. Above all, be respectful.

These visits can bring joy and relief to client and therapist alike. Relax and enjoy. This is a labor of love.

Linda L. Maher, BA, CMT, is a Reiki Master trained in Comfort Touch. Based in Waseca, Minnesota, this business owner teaches geriatrics and sports massage. For more information, visit www.themassagelady.com.