Symptom Management
Behavior
Stimulation, Play And Communication
Vestibular Stimulation (Movement)
Stimulation, Play And Communication
Families are wonderfully creative in finding ways of interacting with their children. Since many of our children are visually impaired, we look for learning or creating ways to encourage stimulation of the other senses (see Eye section). We all know what a gift it is to hear our children laugh or see them smile, and we all will do just about anything to get those responses!
As they get older and the neurological system has a chance to mature, our children may become less irritable and more open to play. The chronically irritated child who hates to have his or her face touched, and has never smiled, may grow out of this behavior.
Sensory stimulation activities are varied and are open to much creativity, depending entirely on your child's specific situation. Basically, anything that will stimulate your child's sense of sight, hearing, taste, smell, and touch, as well as sense of motion, is included in these activities. The senses should be stimulated whenever possible, even if there is some sensory impairment. We can never be totally sure of the level of our children's vision or hearing impairments.
Part of play is also learning. Although it is difficult to measure what our children are capable of learning, we shouldn't assume that they are unable to learn.
“Robert has been in an integrated program at our public school for a few years now. I know that he has ‘learned' counting on a number of occasions. When I fold the laundry with him, I ‘count' the socks, undershirts, etc., over and over again. He really seems to enjoy this as if he understands what the numbers mean.”
One way to incorporate “cause and effect” learning into your child's play is to practice anticipatory skills by saying “ready” prior to introducing the stimuli. You might want to try this technique while feeding your child.
Bright flashing lights, contrasts of lights and darks, intermittent introduction of stimuli, and movement of stimuli can serve to encourage vision.
Several of the newer baby mobiles are made with black and white designs. Black and white are good colors for early visual development; then progress to red and other bright and shiny colors. Shiny pom poms and pinwheels are great! Shiny or colored tape can be applied to less interesting toys and objects to encourage tracking. Toys with lights, especially flashing lights, are also appealing.
Toys are available that can be adapted with large, easy to operate switches so that children with neurologic impairments can turn them on and off (Switch toys). Mirrors (made of soft material, not glass) can be taped to the bed or play areas.
Our children seem to enjoy lots of sounds and will often “complain” if it is too quiet. Provide tapes with both soothing and more lively music, depending on the mood you are attempting to create. Some children enjoy sudden, loud noises (dropping pots and pans or pretending a loud sneeze). This is one activity that siblings greatly enjoy helping with. Provide as many types of sounds as you can think of for variation: music boxes, radios, “Walkman-type” tape players (make sure that the volume dial is fixed somehow to prevent accidental turning up of the volume), stuffed animals and other toys that make sounds. There are several battery-run musical instruments (e.g., keyboards) that your child can “play” while you place his or her hands on the instrument. This will also encourage “cause and effect” learning. Keep in mind that some children become very irritable when exposed to loud and sudden noises. Sensory stimulation activities need to be adapted to each child's needs.
If your child is to be away from you (e.g., during hospitalizations or respite care) you might consider a tape of familiar family voices singing, laughing and talking, or the dog barking. There are lots of tapes available that have various sounds your child may enjoy (different animal sounds, ocean sounds, etc.)
Herb Moore created music for "Sophia's Garden" by translating the genetic instructions from the gene that codes for the synthesis of ASM, the enzyme that does not function properly in Niemann-Pick Type A, into information that can be used by various synthesizers and other types of musical instruments. In this way the genetic sequences have become the themes and motifs for the music. Many children enjoy the soft soothing music of "Sophia's Garden" and a portion of the proceeds benefit NTSAD.
The sense of smell can be stimulated by utilizing vials of food flavorings (peppermint, vanilla, orange, etc.) or by just having your child smell the family's dinner. And, of course, throwing in words like “spaghetti sauce” may encourage learning. Likewise, if your child is able to, tastes are encouraged so that the sense of smell is connected with the sense of taste. Smelling and tasting have the added benefit of stimulating the appetite and aiding in digestion.
Note: If your child tends to have seizures, you might try to discover if anything in particular seems to bring them on. Certain colognes, for example, have been known to precipitate seizures.
Any physical contact that you have with your child will stimulate his or her sense of touch. Providing tactile cues as a part of routine daily activities allows your child to participate more fully in his or her life. You can have your child hold the toothbrush before mouth care, touch a special toy before playing with it, or feel an item of clothing before dressing.
Look for things that provide a variety of textures for your child to touch with his or her fingers or for you to rub on the child's skin. Many “special” toy catalogs (see Resources in Appendix) have toys designed with various textures. You can make your own texture board or blanket (or have a special friend or relative make it for your child). Any rough, smooth, ribbed, rubbery, sticky surface will do. You may want to experiment with liquids and other textures as well (play dough, finger paint, shaving cream, pudding!). The possibilities are endless, and your child will enjoy the new experience.
One way of encouraging cause and effect is to provide tactile “cues” for your child when you or someone else greets him or her. For example, help him or her to touch your ring or watch as you repeat your name.
Vestibular Stimulation (Movement)
Children generally love to be held, bounced, walked or rocked. Sometimes, this is the only thing that works with an irritable child (see Irritability section). Some children also enjoy more vigorous movements like swinging or rocking. Twirling around, however, may upset your child because of immaturity of the vestibular system (which gives us our sense of balance).
It is important to provide a variety of “places” in which your child can play and learn. Bean bags are great because they mold to the child (and siblings enjoy them as well). Hammocks can be hung in a common room and are easy to take down when not in use. Make sure that your child is safely secured in the hammock and that you are standing next to him or her. Hammocks provide motion and vestibular stimulation.
Corner chairs, which are triangularly shaped, provide good support for sitting and can be easily adapted to fit your child. For smaller children, a baby carrier (e.g., Graco Courier Soft Baby Carrier) provides good head support and enables you to take your child around with you as you work around the house. A carrier also allows for greater accessibility outdoors. Prone standers (e.g., by Mulholland) allow the child to “stand up” supported, freeing the arms for movement. A seat low to the ground with wheels allows the child to be easily moved and to be “where the action is” if other children are around. (You can order a low, removable base on wheels for a Tumble Form seat.)
Many parents report that waterbeds are great and provide a range of vestibular bouncing and rolling sensations. Waterbeds can be particularly helpful during periods of fussiness. Children with poor head control need to be watched carefully while on a waterbed, however, to avoid suffocation.
Provide cues for your child before moving him or her. Say “We're getting out of the chair now” and touch his or her arm. Or say, “Ready” or “1-2-3.” This helps your child to be part of the activity. It also avoids startling the child.
“I always told him what I was doing and even though he may not have understood me, he knew the routine, he trusted me and approaching him this way always seemed to minimize his fears and seizures.”
One thing that many of us have learned through the years is that the total care of our children has many dimensions, and that we do not have to continually meet needs that others perceive as important.
“There were so many things that had to be done for my child: medications, tube feedings, exercising and other necessities of daily care. Then there were all the ways in which I could ‘stimulate' him that the therapist suggested. There was so much that I had to do, when all I wanted to do was to sit and hold him and love him.”
Each of us and each of our children are unique and we need and deserve the “space” to exercise our own judgments in our own ways.
As parents we are usually very sensitive to a child's subtle signs.
We can tell if the child's cry is one of pain or boredom; if the child's face is showing discomfort or hunger. We are the experts in interpreting the needs of our children.
Vocalizations from our children are little gifts. Smiles and laughs are even greater gifts. Vocalizations can be encouraged by repeating the sound after it is made by the child. Encouraging laughter is usually one reaction we all seem to strive for. Be it throwing a cookie sheet on the floor to make a sound or faking a loud sneeze, or anything else, we'll go to great lengths to get a laugh from our children.
Use every opportunity to look for signs of communication from your child, and make an attempt to reinforce any attempt that your child makes to communicate. A signal may be as simple or subtle as a tense muscle. These signs may initially be random, but if you give the signal a meaning, perhaps your child will learn to give it a meaning as well.
“I would talk a lot to him and reassure him. He responded to me and totally trusted me. He knew my voice, my touch, my smell...as he lost some senses, others would become more pronounced... don't underestimate what they can do –and adapt!”