Rubens assesment & Recommendations by Daniel Kish
After Daniel Kish spent the weekend (may 2009) with us he later emailed an assesment of Ruben with guidance and recommendations on his all round development. A copy of the report as follows:
I am impressed at how well Ruben is developing overall. He is bright, motivated, very aware, inquisitive, and enjoys exploring his surroundings. He is also affectionate and enjoys receiving affection. He is generally extremely good natured and easily delighted, although he can erupt instantly into extreme rages which, again, can be quickly consoled once Ruben's concerns are identified and addressed.
As you know, during my 15 year's of work with blindness of all types, I have been privileged to work with dozens of children and young adults with LCA, so I have much experience from a practical standpoint with this syndrome. There are 11 currently known genotypes of Leber's Congenital Amaurosis (LCA). Therefore, there is a range of presentation of symptoms including varying levels of vision impairment, occasional hearing loss, and occasional developmental anomalies or disruptions. These may include mild to moderate central nervous system complications which may include cognitive or language disruptions, motor disruptions, and/or, on rare occasions, late onset seizure activity which is usually controllable. In the case of developmental disruptions, be they motor, cognitive, communication, or whatever, in our experience, if the disruptions are addressed with suitable interventions, they usually seem to resolve quite adequately in the end. Unfortunately, mistakes are commonly
made among blindness professionals, as well as other health and educational professionals, about the interactions between blindness and other health or developmental complications. Blindness is often wrongly assumed to account for a much wider range and intensity of complications than may actually be the case for many children. Failure to recognize the presence of complications in addition to blindness, along with lack of knowledge about how these complications may interact with blindness, may result in a serious and long term flaw in early intervention program design and implementation. This can further exacerbate rather than properly address any complications or disruptions that may exist in addition to blindness.
None of Ruben's interventions appear to be excessive in terms of time or intensity, and he appears to be responding very rapidly across all developmental domains including perceptual-motor, comprehension, psycho-emotional management, and social engagement and communication. In addition, he appears to excel in receptive and expressive language and auditory intelligence. Worth particular note is Ruben's ability to learn very rapidly and apply any matter put to him when he is fully engaged.
The only area which appears to sustain minor disruptions is his self directed ambulation. He is cruising somewhat independently, but still much prefers to have his hand held, or to be carried. When holding on to someone's hand or pushing his push chair, Ruben can walk at an age appropriate speed, and with a more normal gait pattern. I expect that, once Ruben has grasped the use of his cane and age appropriate FlashSonar, Ruben will find comfort in walking on his own through open space. I expect this to emerge within the next 6 months, if the following recommendations are implemented, and if I am contacted with any concerns which I may be able to address.
RECOMMENDATIONS
In general the following recommendations aim at encouraging more self directed movement for Ruben. For this, he needs a sense of personal safety as well as ability to acquire information from his environment without dependence on others. Early long cane and FlashSonar training will foster this.
1. Review the video files from our "Perceptual Development Workshop Part One" page, linked from our "Documents and video" page at: www.worldaccessfortheblind.org
You may also wish to review our "FlashSonar program also linked from this page. Although these materials are somewhat geared for professionals, we have tried to make them more generically accessible. Also, read the APPENDICES. These are drafts of articles that have been published in various forums.
2. We generally find that providing blind children under the age of around 6 years with a cane as tall as they are greatly facilitates effective cane use. (See APPENDIX ONE for a draft of an article that was published in a professional periodical in the U.S.)
Don't worry about "bad" cane habits developing if Ruben starts using it day to day without immediate professional supervision. The perceptual system develops most rapidly and effectively through experience and discovery with supervision as appropriate. Most of what we learn, we learn through self directed application and practice, not instruction. Instruction is like sign posts. Someone else puts up the sign posts to point the way at critical junctions, but we can only get there by traveling the road ourselves, and we ultimately choose our way. The more we do it, even in the beginning stages, the better we learn it. Sighted kids take about 8 years to learn to make the most use of their eyes (some say up to 21 years). We would do well to afford blind kids similar latitude. The very most important thing for Ruben to recognize now is that his cane is a tool for perception. If he knows this, then all the right "habits" will form with experience, maturation, and
some professional guidance toward achievement. If he can keep the tip on the ground and in front of him most of the time, and eventually move it from side to side fairly regularly, then half the battle is won.
The following will help you to foster Ruben's recognition of the cane as a perceptual tool:
- For now, have Ruben push his push chair if he wants. Take hold of the push chair yourselves, and pull it along at a slightly faster speed than he will walk on his own. He will follow the push chair at a quicker pace than he otherwise would. This will foster a sense of more natural walking speed, gait patterns, and posture.
- Acquire a cane as tall as Ruben is, or perhaps even a couple inches taller. Expect a growing blind child to go through canes like shoes, so slightly taller canes will just last a little longer. If mobility officers say his cane is too long, refer them to me, or to the article in APPENDIX ONE. We are trained bio-mechanically to a different standard, but this standard is very out of date, and does not take into account a more brain based model of information processing. For what its worth, in the states I am regarded as an authority on this subject.
- Keep Ruben's cane near to him or within his reach as much as possible. This will develop a comfort level with the cane in his presence. The cane will eventually come to be considered as important as clothing, if not more so. Allow Ruben to play gently with it. Chat with him about what he finds with it as he moves it about.
- When Ruben walks holding hands, encourage him to hold his cane with the other hand. See if he'll explore the ground with it as he walks. This may not impress him, since recognition of the cane's utility lies in its relevance to Ruben as he moves. But, this may work. Also, it's only until he starts taking an interest in moving on his own with his cane. Ideally, he would be walking on his own with his cane, or holding hands with his other hand free to touch things as he encounters them.
- Try acquiring a cane of your own, about up to your chin in height, give or take. (One cane for the both of you is sufficient.) Theo may also want one. Try having Ruben hold your cane further down on the shaft, while one of you holds it at its grip. Let him more or less take over the cane's function; you're just supporting it. Chat with him about what the cane encounters as you walk. "See Ruben? Here's a step. The cane goes up the step. Now, the cane goes down the step. Look. We've found a lamp post. See how it sounds? Bing, bing. Here's some bushes. Rustle, rustle. And here's some grass." Do not push it if Ruben refuses just now, but I'd say you might use stronger encouragement within the next 6 months or so. In time, you can explain to him that, if he wants to walk with anyone, he'll have to hold and use his cane. If not, he'll have to follow along on walks with no one to hold. Ruben will get the sense of the use of the cane, and will want his own. Often, children will try
to take the cane from their parents and use it themselves. When this happens, replace the long, adult cane with his cane, which should be as tall as he is.
3. Bare feet, or thin soled shoes or sandals conduct more feedback to the perceptual system to govern walking. This is especially true for blind children. Not only do the feet provide sensory information about the ground over which we are walking, they respond to every element of the ground to provide information to maintain balance. Staying away from thick soled shoes or shoes with a raised heel in the early years can greatly improve walking development, gait, and balance.
4. Playing with Ruben with containers of different sizes and materials may encourage interest in the auditory environment. Try singing and talking into these containers, moving them closer and away from him, to the left and to the right. Put them where he can find them if he should want to play with them himself. Try also singing to him from behind him, while moving a large tray toward and away from his face. Your voice should fluctuate as the tray moves. You can also play the flying game. This involves flying him around the building until you come close to a wall, which can be on his left or right. He needs to reach out and push off with the correct hand for the flight to continue. Hopefully, you will begin to see him reach out as you approach the wall. Don't always tell him that you are approaching a wall; expect him to know, and expect him to know which way it is. You may have to tell him at first until he becomes accustomed to the game, but the goal is for him to know.
Also, as you fly around, talk about how the different rooms in the house sound - living room, kitchen, hallway. Have him tell you which room he is in, and which room he wants to go to. If he says "livingroom" (or whatever you want to call it), trick him sometimes, and see if he can tell he's in the wrong room.
5. As Ruben becomes more verbal, ask him fairly regularly as he moves through his environment, "What do you hear? Where is it coming from? What do you think that is? What's that under your feet?" If he doesn't know, then encourage him to investigate. Encourage him to lead the investigation, and to discover the information for himself, with support as needed. Try not to feed him too much information. Hints are good, but too much direct information generally accesses the language systems rather than the perceptual system. It is the perceptual system that is most involved in understanding of the spaces around us. Ruben may choose to engage guidance from others to help him move around, but it is respectful to him to provide him with the means to choose to do it himself if and when and how he wishes. He should be in control of the guiding process. If he does not have a perceptual understanding of space, and cannot use is perceptual system to guide his own movements with minimal need for guidance from others, then he will be
constrained to using guidance, rather than being free to make the choice for himself. The more he discovers information for himself, the more he will develop the means to do so in larger, more complex environments as he gets older. But, this ability does not usually develop magically or spontaneously out of thin air. It is fostered, learned through long practice, experience, and application. In order to develop the full breadth of abilities for self directed achievement, blind children must do what they cannot see. They see through doing; their doing is their seeing. Since they cannot see anything, they pretty much have to do everything. When guidance is preferred, it should be by his own initiative and in a manner of his own choosing. Again, this is often not fostered in blind children who are often trained to accept guidance passively. Active, self initiated engagement of assistance is fostered by supporting Ruben always to make his own choices, and follow them through by his own direction.
6. In general, when children ask questions, the best answer is a thought provoking question in return. "What can you tell me about that? What do you think it is? Where do you think it comes from? What brought it here?" And so on. Rather than giving away information, it is usually best (although not always practical or feasible) to encourage the child to discover answers through investigation. "Let's go find out? You go and tell me what you find over there?" This approach respects what the child has going on in their head, and respects and nurtures their capacity to learn and grow. It also accesses the thinking part of the brain, which causes that to develop. Giving answers mainly accesses the knowledge storage part of the brain, but doesn't necessarily contribute to whole brain function. Discovering answers for yourself, does.
7. Have fun finding and experimenting with interesting sounds, touches, and smells. It could be bubbling water, a strange car noise, the wind through the trees, an odd echo in a room, an oddly textured pathway, the ringing of one's cane on a fence, a strange bird or insect, a train whistle in the distance, the sound of someone's shoes on the pavement. The world is full of novel and exciting stimuli, most of which carry esthetic and functional information.
8. Let Ruben play on or with age appropriate equipment and engage in other activities with supervision as is age appropriate, but with less and less intervention as he gets older. Let him do his own thing. Let him learn from his mistakes as kids normally do, rather than being insulated from mistakes. When it comes to nasty drop-offs that he might miss, you can quietly watch him and position yourself near any drop-offs from underneath in case anything goes wrong. As he gets older, resist following him around too closely or hovering over him. Doing so will engender a weakened self-concept that he cannot or should not manage without external intervention, which can be a very difficult self-concept to break once its established.
9. As Ruben gets older, he should be encouraged to participate in age appropriate activities and so and sports with fully sighted children, according to his interest, with necessary adaptations, such as stimuli that make sound. The reason that children can engage in sports is that they can perceive the stimuli that are involved, including balls, targets, and each other. If these stimuli are given a sound, such as tieing the ball loosely into a plastic grocery bag, then blind children can participate effectively with sighted children. He may need some extra supervised practice to master some of the skills, such as catching, chasing, or kicking a ball, or aiming at a target. It may also help to receive additional support from his friends as needed. It will be well worth it in helping Ruben to integrate with other children.
10. Although respect must be given to the impact of adverse weather on Ruben, remember that gloves, hats, or hoods that cover the ears are equivalent to a blindfold to the senses. These will obscure or interfere with Ruben's perception of his surroundings. Please be cautious and strategic about their use. Hearing can be minimally blocked by a cap that just covers the tips of the ears. This will mostly protect his ears from cold, as it is this part of the ear that is most susceptible to the cold. A thick scarf can be wrapped around his face, leaving the mouth and the ears (except for the tips) exposed. Full fingered gloves with thinsulate and silk or seamless cotton glove liners may be worn instead of mittens, but 3-quarter fingered gloves are preferred whenever possible. A careful search should be conducted to find cold weather gear that fits Ruben well, is not uncomfortable or obstructive, and does not occlude his senses. No sighted person would ever think of wearing
anything to obscure their vision, no matter how cold it was.
11. As age appropriate, ruben would benefit from frequent engagement in full body activities, such as climbing, swimming, gymnastics, or martial arts. Such activities are known to be highly neurologically stimulating and foster sensory integration.
12. Manual coordination and tactile development can be supported by encouraging children to engage in manipulative activities as age appropriate. These might include board games, constructive manipulatives such as legos or other construction sets, and crafts. Interactive construction activities might include assembling Christmas decorations, such as beaded chains popcorn chains, and paper chains. Chaining paper clips is also an activity that kids often enjoy - seeing if they can string enough paper clips together to hang from an upstairs banister, for instance. Obviously, this is done as is age appropriate. However, we want to avoid filling the child's life with what I call "noise toys." Children can become apathetically button crazy to make things make noise, but this does not support the development of strategic use of the hands, which is critical for blind children. I once had a young blind student say in alarm "how do you turn it off," when handed a live guinea pig. We've also had many students come to us who really struggle to use their hands strategically to gather information from the environment and interact with it, which is a troublesome state of affairs when your hands are key to how you function as a blind person.
13. Above all, a "can do", achievement oriented attitude is the key toward life achievement. Ruben should never be made to feel afraid of his environment. Learning respect for vs. fear of the environment are very different things. Respect is a powerful tool. Fear is usually debilitating and restricting. Although most of us have been conditioned to be fearful especially of the unknown, it rarely serves any purpose toward achievement. This is especially true for blind people who's quality of life depends on their willingness and ability continually to embrace and deal with the unknown on a regular basis.