Exceptional Parent - August 2009 - (Page 29) munication and sharing of information with the practitioner and his/her office staff. When you call for an appointment, it is a good idea to tell the scheduler that your child has a disability, especially if the practitioner does not specialize in your child’s disability and/or if you think the appointment might take longer than the average appointment time. It is OK to ask if the practitioner has treated patients with similar disabilities. You can offer the name or link to a website, if you think it would be useful information. Another thing to consider, with respect to information sharing, is to give specific information about what they need to know so they can have positive interaction with your child. One way to do this is to provide them with some information on how your child communicates, if your child has sensory issues or behavioral considerations, etc. This information would best be presented in a format that can be easily read ahead of time and then be read at a glance before the practitioner enters the room. For this reason, it would be good to have the information listed on one page and to avoid paragraph after paragraph of information. The form “What to Expect: A guide to me” (featured on page 30) could be used or adapted to fit what you need to communicate about your child. This type of document could be faxed, e-mailed, snail-mailed, or taken to the appointment ahead of time. If the information is not too detailed, it can be taken to the office on the day of the appointment. EXAMPLE: A child’s dental hygienist is getting ready to start a cleaning and says, “OK Johnny, open wide. I am going to look inside your mouth and see if there are any bugs in there I need to get out of there.” Not knowing Johnny, she was unaware that he is very afraid of bugs. Of course the hygienist was only talking about germs, but he takes her literally, and thinks there are creepycrawly things in his mouth; an instant problem. So, in the future, Johnny’s information sheet will need to include a warning that he takes things very literally, metaphors should be used with caution, and there is a strong dislike of bugs. As parents, we will not always be able to predict what needs to be included in the information we provide to the practition- er. In fact, the parent in the example above had not thought to put this on the information sheet until the first time it became an issue, but she will now. Sometimes we just have to learn as we go. Time & Timing. These will be important aspects of your plan. The time of the appointment can make or break the success. Some kids need to have an appointment set when there are as few people at the doctor’s office as possible. The scheduler may know the calmest time of day. Also consider if the appointment will run into a meal time—will this be a problem? Is the meal better before, after, or while in the waiting room? (Check with office staff about food in the waiting room.) Can your child wait for his or her turn in the waiting room, or could the waiting take place in an exam room? Will the child need small breaks during the exam, or would it be best to just get through with the exam as soon as possible? EXAMPLE: A strategy regarding time would be to call the clinic before you leave, when you are on your way, or from the office parking lot to find out if the practitioner is running behind. This can be a plan that is developed ahead of time with office staff. If the child cannot wait patiently and it is going to be awhile, the office staff could tell you what time to arrive and call you on your cell if things speed up. For some, a couple of trips around the block, or a quick trip through a drive-thru may be better than waiting in a waiting room. For others, that might prove to be disastrous as a change of plans may be difficult. However, if the child does well with a visual schedule, checking in with the office can become part of the routine of going to the doctor and you can build that right into the visual schedule or “to do” list. This has worked well for some. Telling the child about the appointment. This one kind of fits under Time & Timing, but it can be an issue all on its own. Every child is different, though all children will need to know, with some amount of advanced warning, where they are going and what is going to happen so they have an opportunity to adjust to the idea and regulate their behavior. Some kids may have a great deal of anxiety if they know too far in advance, while others need to know as far in advance as possible. Some just need to know when they are going, where they are going, and why they are going there—while others need pictures of where they are going and a story about what will happen when they are there. If this story was written specifically for the individual it is sometimes called a social narrative. Some refer to them as Social Stories (trademark of Carol Gray). Carol Gray has written a number of books on the subject, books filled with examples of stories and how to develop them. She has even developed some video social stories. A quick search on the Web, using the key words “social stories” or “social narratives” will bring information and examples. Social narratives can be written with pictures to help the child understand what is being said in the story. Some use line drawings, some use photos; this will depend on the needs of your child. A few practitioner’s offices have photos of their clinic on their website, these can be useful. EXAMPLE: One father called the office of the practitioner and asked for pictures of the place so he could show his son, who has autism, where he was going. After a brief conversation with the father, one of the office personnel took her cell phone around the clinic and took photos of the waiting room, the hall, the bathroom, the clinic room, the reception desk, and the faces of the people the man’s son would be seeing. She really “got the picture” of what the young man needed. The father showed the son the pictures as he talked to him about going to the doctor. He reviews these photos with his child before each trip to this doctor…visits have gone much more smoothly. Some children can view the pictures right off the phone, while others will need them printed out onto paper, and yet another child will need them imbedded into a story—like pictures in a book. Some kids may do well with an audio story that has been recorded onto their MP3 player or mini-recorder. Others may need the visual. If the child does not need pictures specific to the situation, there is a continued on page 30 www.eparent.com/EP MAGAZINE • August 2009 29 http://www.eparent.com Table of Contents for the Digital Edition of Exceptional Parent - August 2009 Exceptional Parent - August 2009 Contents Ancora Imparo What's Happening Further Reading New Products 2009 Disability Awareness Night Schedule 2009 Models of Excellence in the Healthcare Profession Preterm Birth: How It Affected My Family Treatment of Neurosensory Disorders Improves Psychological Well-Being in Children Federal Program Encourages Health Service Innovations on Developmental Disabilities Close Encounters of the Medical Kind Sitting on top of the World: One Physician's Journey to Success Raising a Noonan Syndrome Child When We Found Out Our Daughter Had CMT August is Spinal Muscular Atrophy Awareness Month! Newborn Screening Saves Babies, One Foot at a Time Another Day in the Life of the National Children's Study Evidence Based Humanity Must Be Part of the Equation Incontinence Education Series Part 7 Emergency Preparedness Series Part 4 On the Road to Recovery - Self-Deiscovery: The Crown Jewel of Psychotherapy Asperger Syndrome and the Difficulties of Diagnosing and Treating Related Conditions EP Bookstore Special Needs Alliance Specialcare AADMD - American Academy of Developmental Medicine and Dentistry Organizational Spotlight Living with a Disability Exceptional Parent - August 2009 Exceptional Parent - August 2009 - Exceptional Parent - August 2009 (Page Cover1) Exceptional Parent - August 2009 - Exceptional Parent - August 2009 (Page Cover2) Exceptional Parent - August 2009 - Exceptional Parent - August 2009 (Page 1) Exceptional Parent - August 2009 - Contents (Page 2) Exceptional Parent - August 2009 - Contents (Page 3) Exceptional Parent - August 2009 - Contents (Page 4) Exceptional Parent - August 2009 - Contents (Page 5) Exceptional Parent - August 2009 - Ancora Imparo (Page 6) Exceptional Parent - August 2009 - Ancora Imparo (Page 7) Exceptional Parent - August 2009 - Ancora Imparo (Page 8) Exceptional Parent - August 2009 - Ancora Imparo (Page 9) Exceptional Parent - August 2009 - What's Happening (Page 10) Exceptional Parent - August 2009 - What's Happening (Page 11) Exceptional Parent - August 2009 - Further Reading (Page 12) Exceptional Parent - August 2009 - Further Reading (Page 13) Exceptional Parent - August 2009 - New Products (Page 14) Exceptional Parent - August 2009 - New Products (Page 15) Exceptional Parent - August 2009 - New Products (Page 16) Exceptional Parent - August 2009 - 2009 Disability Awareness Night Schedule (Page 17) Exceptional Parent - August 2009 - 2009 Models of Excellence in the Healthcare Profession (Page 18) Exceptional Parent - August 2009 - 2009 Models of Excellence in the Healthcare Profession (Page 19) Exceptional Parent - August 2009 - Preterm Birth: How It Affected My Family (Page 20) Exceptional Parent - August 2009 - Preterm Birth: How It Affected My Family (Page 21) Exceptional Parent - August 2009 - Treatment of Neurosensory Disorders Improves Psychological Well-Being in Children (Page 22) Exceptional Parent - August 2009 - Treatment of Neurosensory Disorders Improves Psychological Well-Being in Children (Page 23) Exceptional Parent - August 2009 - Treatment of Neurosensory Disorders Improves Psychological Well-Being in Children (Page 24) Exceptional Parent - August 2009 - Treatment of Neurosensory Disorders Improves Psychological Well-Being in Children (Page 25) Exceptional Parent - August 2009 - Federal Program Encourages Health Service Innovations on Developmental Disabilities (Page 26) Exceptional Parent - August 2009 - Federal Program Encourages Health Service Innovations on Developmental Disabilities (Page 27) Exceptional Parent - August 2009 - Close Encounters of the Medical Kind (Page 28) Exceptional Parent - August 2009 - Close Encounters of the Medical Kind (Page 29) Exceptional Parent - August 2009 - Close Encounters of the Medical Kind (Page 30) Exceptional Parent - August 2009 - Close Encounters of the Medical Kind (Page 31) Exceptional Parent - August 2009 - Sitting on top of the World: One Physician's Journey to Success (Page 32) Exceptional Parent - August 2009 - Sitting on top of the World: One Physician's Journey to Success (Page 33) Exceptional Parent - August 2009 - Raising a Noonan Syndrome Child (Page 34) Exceptional Parent - August 2009 - Raising a Noonan Syndrome Child (Page 35) Exceptional Parent - August 2009 - When We Found Out Our Daughter Had CMT (Page 36) Exceptional Parent - August 2009 - When We Found Out Our Daughter Had CMT (Page 37) Exceptional Parent - August 2009 - August is Spinal Muscular Atrophy Awareness Month! (Page 38) Exceptional Parent - August 2009 - Newborn Screening Saves Babies, One Foot at a Time (Page 39) Exceptional Parent - August 2009 - Another Day in the Life of the National Children's Study (Page 40) Exceptional Parent - August 2009 - Another Day in the Life of the National Children's Study (Page 41) Exceptional Parent - August 2009 - Another Day in the Life of the National Children's Study (Page 42) Exceptional Parent - August 2009 - Another Day in the Life of the National Children's Study (Page 43) Exceptional Parent - August 2009 - Evidence Based Humanity Must Be Part of the Equation (Page 44) Exceptional Parent - August 2009 - Evidence Based Humanity Must Be Part of the Equation (Page 45) Exceptional Parent - August 2009 - Incontinence Education Series Part 7 (Page 46) Exceptional Parent - August 2009 - Incontinence Education Series Part 7 (Page 47) Exceptional Parent - August 2009 - Incontinence Education Series Part 7 (Page 48) Exceptional Parent - August 2009 - Emergency Preparedness Series Part 4 (Page 49) Exceptional Parent - August 2009 - Emergency Preparedness Series Part 4 (Page 50) Exceptional Parent - August 2009 - Emergency Preparedness Series Part 4 (Page 51) Exceptional Parent - August 2009 - On the Road to Recovery - Self-Deiscovery: The Crown Jewel of Psychotherapy (Page 52) Exceptional Parent - August 2009 - On the Road to Recovery - Self-Deiscovery: The Crown Jewel of Psychotherapy (Page 53) Exceptional Parent - August 2009 - On the Road to Recovery - Self-Deiscovery: The Crown Jewel of Psychotherapy (Page 54) Exceptional Parent - August 2009 - On the Road to Recovery - Self-Deiscovery: The Crown Jewel of Psychotherapy (Page 55) Exceptional Parent - August 2009 - Asperger Syndrome and the Difficulties of Diagnosing and Treating Related Conditions (Page 56) Exceptional Parent - August 2009 - Asperger Syndrome and the Difficulties of Diagnosing and Treating Related Conditions (Page 57) Exceptional Parent - August 2009 - Asperger Syndrome and the Difficulties of Diagnosing and Treating Related Conditions (Page 58) Exceptional Parent - August 2009 - Asperger Syndrome and the Difficulties of Diagnosing and Treating Related Conditions (Page 59) Exceptional Parent - August 2009 - EP Bookstore (Page 60) Exceptional Parent - August 2009 - EP Bookstore (Page 61) Exceptional Parent - August 2009 - Special Needs Alliance (Page 62) Exceptional Parent - August 2009 - Special Needs Alliance (Page 63) Exceptional Parent - August 2009 - Specialcare (Page 64) Exceptional Parent - August 2009 - Specialcare (Page 65) Exceptional Parent - August 2009 - Specialcare (Page 66) Exceptional Parent - August 2009 - Specialcare (Page 67) Exceptional Parent - August 2009 - AADMD - American Academy of Developmental Medicine and Dentistry (Page 68) Exceptional Parent - August 2009 - AADMD - American Academy of Developmental Medicine and Dentistry (Page 69) Exceptional Parent - August 2009 - AADMD - American Academy of Developmental Medicine and Dentistry (Page 70) Exceptional Parent - August 2009 - Organizational Spotlight (Page 71) Exceptional Parent - August 2009 - Organizational Spotlight (Page 72) Exceptional Parent - August 2009 - Organizational Spotlight (Page 73) Exceptional Parent - August 2009 - Living with a Disability (Page 74) Exceptional Parent - August 2009 - Living with a Disability (Page Cover3) Exceptional Parent - August 2009 - Living with a Disability (Page Cover4) http://www.eparentdigital.com/nxtbooks/exceptionalparent/201009 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201008 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201007 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201006 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201005 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201004 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201003 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201002 http://www.eparentdigital.com/nxtbooks/exceptionalparent/2010rg http://www.eparentdigital.com/nxtbooks/exceptionalparent/200912 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200911 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200910 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200909 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200908 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200907 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200906 http://www.nxtbookMEDIA.com
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