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CHILDREN WITH SHWACHMAN-DIAMOND SYNDROME
At the SDS Family Conference, Dr. Elizabeth Kerr gave a very interesting talk based on her paper entitled

The behavioral phenotype of school-age children with shwachman diamond syndrome indicates neurocognitive dysfunction with loss of Shwachman-Bodian-Diamond syndrome gene function.

published in The Journal Of Pediatrics. It focuses on the learning patterns of children (ages 6-17) with Shwachman-Diamond Syndrome. Based on the findings of her research, Phonological Processing, Visual Processing, Attention, Flexible Problem Solving, and Behavior were among the types of difficulties that can be experienced. As such, the following recommendations were made:

If you notice specific difficulties, the earlier your child receives support or intervention the better. With a “wait and see” approach, you may miss many months of valuable support.

Phonological Processing/ Reading/Spelling:
Phonological processing is related to the use of sound structures in processing written and oral language and involves rapid naming, phonological awareness (i.e., the sound structures), and phonological memory. Chronic middle ear infections almost always infer with hearing. In turn, delays in language development may be evident earlier on with continued delays in phonological processing. Weaknesses in phonological processing are related to delays in reading and spelling achievement. Research at the Hospital for Sick Children and their colleagues (e.g., “Putting struggling readers on the PHAST track” m. Lovett et. al., Journal of Learning Disabilities, 2000 Vol 33 (5), pgs 458-476) have discovered three essential components to remediation:

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Development of pre-requisite skills which includes letter sounds associations, identification of sight words, recognition of vowel, variant vowel sounds, and affixes. These skills are best developed if a specific block of time is set aside each to focus on them. Direct Instruction can be extremely beneficial. Lessons are highly structured and scripted. Responses are modelled for the student. The structure and repetition of the lessons leads to on-line processing of information. Teaching is reciprocal, in that, the instructor is constantly checking in with the student to ensure that he or she is learning. “Direct Instruction Reading” by Douglas Carine, Jerry Silbert, and Edward Kameenui (Prentice Hall, 1996) is one resource. Other suggestions include the grapheme level activities outlined in “Phonological Awareness Kit-Intermediate” and activities such as deletions (i.e., Rosner activities) and substitutions (i.e., Lindamood activities).
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Practice in word identification strategies. Specific strategies include (a) Rhyming or being taught a list of relatively simple words containing common spelling patterns (e.g., look) and then being taught how to compare new, unfamiliar words to the list (e.g., book, nook, shook, brook, etc); (b) Vowel alert or being taught that each vowel sounds has a short and a long sound and how to use different sound to make a real word (e.g., “I see the vowel ‘o” in this word. First I’ll try ”o” as in “go”. Next I’ll try ‘o’ as in “dog”. That sounds like a read word.”); (c) I Spy or being taught how to look for small words or parts for words in longer, more difficult words (e.g., identify ‘bad’, ‘in’, and ‘on’ in the word “badminton”); and (d) Peeling off, or being taught how to identify and remove prefixes and suffixes before using another strategy to read the root word.
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Use of learning to learn strategies. These strategies include verbal scripts that an individual can use when approaching a new task or word. The highly scripted approach to direct instruction exposes a child to this as do the examples outlined in number 2 above.

Visual Processing:
Visual processing is related to the ability to process, interpret, and organize visual and visual-spatial information. When an individual has weaknesses in these areas, it can cause difficulties at school and sometimes in the social realm. For a given individual, they might display some (but not necessarily all) of the following: poor internal and external organization, difficulty coping with changes in routine, difficulty with generalizations, making literal translations, being overwhelmed, having difficulty with directional concepts and co-ordination, and being readily distractible.

“The Source for Non-Verbal Learning Disorders” by Sue Thompson (lingisystems) and “Educational Care: A system for understanding and helping children with learning problems at home and in school” by Mel Levine (Educators Publishing Service, Inc) are two resources which provide information for understanding and assisting with weaknesses in visual processing. If a child’s language skills are stronger, then teaching them to put labels on what they are seeing and doing can help solidify information.

Attention:
Attention is multifaceted. It refers to a number of processes including: (1) how much information a person can hold in his mind and process at one time (i.e., attention span and working memory); (2) whether an individual is able to focus on, or search for, a specified target (i.e., selective attention); and (3) how well s/he can pay attention during a mundane or boring task (i.e., sustained attention). A child who has difficulties with attention may have trouble listening when someone talks, waiting her or his turn, completing a task, or returning to a task if interrupted. By the age of 5, a child needs to be able to pay attention for a least 25 minutes in order to perform adequately in school.

TeachADHD (www.teachadhd.ca) is a new resource developed by researchers at the Hospital for Sick Children and their colleagues for use by teachers at school. It instructs on various types of attention and helps the teacher develop strategies to harness attention within the classroom.

At school and at home it will be important to:

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Follow a structured daily routine.. School and household routines help the inattentive child to accept order. Keep the times for wake-up, meals, snacks, chores, naps, and bed as regular as possible. Try to keep your environment relatively quiet because this encourages thinking, listening, and reading at home. In general, leave the radio and TV off. Predictable daily events help your child’s responses become more predictable.
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Maintain firm discipline. Children with attention difficulties need more carefully planned discipline than the average child. Rules should be formulated mainly to prevent harm to your child and to others. Aggressive behavior, such as biting, hitting, and pushing, should be no more accepted in an inattentive or hyperactive child than in the normal child.

At home:

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Stretch your child’s attention span. Encouraging attentive behavior is the key to preparing your child for school. Increased attention span and persistence with tasks can be taught at home. Be sure to praise your child when he plays independently. Set aside several brief periods each day to teach your child listening skills by reading to him. Teach games to your child, gradually increasing the difficulty by starting with building blocks and progressing to puzzles, dominoes, card games, and dice games. Later, consequence games such as checkers or tic-tac-toe can be introduced. When your child becomes restless, stop the activity and return for another session later. Plan to have your child do homework and other tasks that require concentration in short blocks of time with breaks in between. Try having your child study with low-level background sound such as white noise or instrumental music. Do homework and studying away from the sounds of television, radio, or others talking but where adults can supervise.

Flexible Problem Solving:
This skill typically develops with age and is required more at school when a child reaches his or her teen years. Flexible problem solving requires the ability to generate ideas, as well as to maintain and/or shift thought processes. Individuals with difficulties in this area may have trouble dealing with ambiguity or getting “unstuck” from an automatic way of responding.

Teachers and parents can help students in this area by making the steps involved in an assignment or daily activity more explicit (e.g., provide “cheat” sheets or templates that outline the steps required to write the essay, to analyse and solve math problems etc). Embed questions designed to prompt the individual into using analytical skills. Questions can include “How did you solve that problem?” “Can you think of another way of doing that?”, “What can you do to help remember that information”. Teach the individual a set of questions to ask him/herself when confronted with a problem, such as: “What is my problem? What is my plan? Am I following my plan? How did I do?”. In other words have the individual identify the problem, develop a solution strategy, self-monitor his or her performance and evaluate the outcome.

The Learning Toolbox website (http://coe.jmu.eud/Learn¬ing Toolbox/) is designed for secondary students with specific learning challenges (e.g., organization, problem solving, attention etc) as well as for their teachers and their parents. The student section includes tools to help the student improve in many areas (e.g. Study skills, test taking, advanced thinking, organization) by providing templates to follow.

Behavior:
Children and adolescents who are not doing well in school may not feel good about themselves. If they feel they can’t cope, they may withdraw from their friends and social activities. Social difficulties were raised by parents of children and adolescents with SDS on ques¬tionnaires. Two resources to foster social competence are:

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“No one to play with: Social problems of LD and ADD Children” by Betty B. Osman, and
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“Raise Your Child’s Social IQ” by Cathi Cohen.