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New Quarterly Newsletter
Observations on Conversions with Young Adults with DS
The Heart
Ten Ways to take charge of your child's IEP


OBSERVATIONS on CONVERSATIONS with YOUNG ADULTS with DS

The National Organization of Parents & Professionals Volume 25, Number 6

By James D. MacDonald, Ph.D., Columbus, Ohio

MacDonald, a clinician and researcher with people with language disorders, was a professor of Speech-Language-Pathology and director of the parent-child communication clinic at the Nisonger Center at Ohio State University from 1971 to 1995. Since 1995, he has directed the Communicating Partners Center. MacDonald, a frequent speaker at NDSC Conventions, was a presenter at the 2002 NDSC Convention in Denver, including at the Youth and Adult Conference.

While I Denver, I spoke to two groups of people with Down syndrome over 16 years of age; most were in their twenties and thirties.

Actually, what we did was have an audience-type talk show. I talked briefly about some keys to having a conversation, and then I asked them to tell about their best conversational partner. I bet over 70 percent of the hands went up furiously. I tried to have little conversations with many of the folks and in the three hours came back with a few observations.

  • Most said that conversations were very important to them.
  • Some seemed to think that conversation simply meant talking and saying as much as is on their minds.
  • Some knew that conversations mean to take turns and let others talk as well.
  • Most of their favorite conversational partners were either friends they made at the convention or their "boyfriend" or "girlfriend."
  • Many said they had been hurt in conversations by people who make fun of them.
I have several very tentative conclusions that may help parents think about the future:

  • Young adults with DS do want to talk to people.
  • They often talk in monologues rather than in back and forth conversations.
  • They often ignore what their partner says and have a hard time responding to what others say.
  • They often play a very passive role in conversations and need quite a bit of silent waiting to get them started.
  • Some are afraid that others will make fun of them.
  • They sometimes have difficulty staying on one topic for more than a few exchanges.
  • They sometimes need help to find what to say.
  • They sometimes need to be reminded to respond to what the other person talks about.
I had a wonderful time. And this experience makes me what to encourage all of you parents of young children to remember two absolutely important skills that make a huge difference as children age:

  1. Taking turns-unless a child takes turns, he will be unlikely to build friendships and learn from others. I spoke with many young adults who knew that talking was much more than performing; they said one thing then waited for me to talk and they stayed in conversations on one topic for several turns. Some did not seem to take turns much and they seemed more isolated than the ones that did.
  2. Responding to what the conversation partner says-it made such a difference to me when the person responded to what I said rather than just continue on with what they were saying. It is not enough for someone to learn to talk; they need to learn to talk about what their partners talk about. Otherwise, most people will lose interest and not build a relationship with them.
And, my point is that it is not too soon to teach your child these two critical skills; taking turns and responding to what you do and say. It saddens me to see so many wonderful people who have a great deal of language to seem so quiet and alone when they have not learned to take turns and talk about what others are interested in.





The Heart
Books/Newsletters

"Cardiac Aspects"

Marino, B. In: Biomedical Concerns in Persons with Down Syndrome. Pueschel, S. & Pueschel, J. (Eds.) (1992). Baltimore, MD: Paul H. Brooks, pp. 91-103. Available through Paul H. Brookes Publishing Co, P.O. Box 10624, Baltimore, MD 21285-0624, tel (800) 638-3775

This chapter discusses the importance of early diagnosis and management of cardiac problems in children and adults with Down syndrome. The author discusses developments in pediatric cardiology and surgery, in addition to improved medical care.


"Cardiorespiratory Problems in Children with Down Syndrome"

Kidd, L In: Down Syndrome: Advances in Medical Care. Lott, I, & McCoy, E, (Eds.) (1992) New York, NY: Wiley-Liss, pp. 61-69. Available through Wiley-Liss, 1 Wiley Drive, Somerset, NJ 08875; tel.: (800) 225-5945.

This chapter provides a brief overview of heart disease in children with Down syndrome, and the advances in treatments for such conditions Due to a high incidence of heart disease in infants with Down syndrome, the author stresses the importance of continued screenings for early diagnosis of cardiac problems.


"Heart Disease and Children with Down Syndrome"

Cousineau, A. & Lauer, JL In: Medical & Surgical Care for Children with Down Syndrome: A Guide for Parents. Van Dyke, D., Mattheis, P, Eberly, S. & Williams, J. (Eds.) (1995). Bethesda, MD; Woodbine House, pp 35-63. Available through Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817; tel.: (800) 843-7323.

This chapter discusses the different heart disorders typically associated with Down syndrome, and their treatment. Basic information is also provided about how the heart functions, causes and symptoms of heart disease, associated disorders of the heart and circulatory system, treatments and results. The text is written in simple language.

"The Heart"

In: Medical Care in Down Syndrome: A Preventive Medicine Approach. Rogers, P & Coleman, M. (1992). New York, NY: Marcel Dekker, Inc., pp. 157-168. Available through Marcel Dekker, Inc., 270 Madison Avenue, 4th Floor, New York, NY 10016; tel.: (212) 696-.9000.

This chapter discusses the importance of continued careful evaluation for early diagnosis of heart defects common in infants with Down syndrome. The authors provide a brief review of cardiac defects and pulmonary disease, and a summary of available cardiac care.

"The Heart and Down Syndrome"

Kidd, L. & Taussig, Et (1995). New York. NY: National Down Syndrome Society. Available through the National Down Syndrome Society, 666 Broadway, New York, NY 10012; tel.: (800) 221-4602 or (212) 460-9330.

This booklet provides general information about various heart defects that are common in children with Down syndrome. Questions are answered about diagnosis and treatment of abnormalities of the cardiovascular system, in addition to the relationship of heart defects to the respiratory system and guidelines for choosing a hospital and surgical team.





Ten Ways to Take Charge of Your Child's IEP Meeting or Family Support Plan

By Janet Holmes
(Reprinted by permission from Family News Digest)
Exerpted from Learning Disabilities 101


Be first. . . make sure you talk first. Don't be afraid to lead the IEP meeting. Bring notes, take notes and make all introductions yourself. It's your school, your teachers, your child. Put your priorities on the table for discussion first.

Build a Strong Base of Information. . . You know your child. Get to know his school behavior, attend his class for a substantial amount of time. Be sure to use the appropriate visiting procedures but don't be afraid to make a surprise visit. During the IEP meeting ask questions if you do not understand. You are the expert for your child, but you are not expected to understand all school terminology.

Know Your Rights. . . Public Law has given all parents rights and schools legal responsibilities. How can you advocate for important issues if you're not sure you are right? Local family and state organizations hold workshops for parents. Find them!

Bring Notes. . . Make your own goals for your child. Start with making long-term goals for your child and family. Take your own notes to the meeting and write long- and short-term objectives in your words. It is appropriate to include your suggestions, you should expect nothing less.

Know How to Say No. . . Be gracefully firm. Take a firm stand on important issues and only important ones. Be willing to compromise and don't expect to get it all. Choose your fight carefully, and then use the phrase "that is unacceptable." Have your argument ready, but always speak carefully. Get areas of disagreement written on the plan or, better yet, go home and write a letter to attach to the IEP. Don't be rushed into accepting anything; lEP's can be continued at a later date. The IEP will go forward without your signature, but you need to document your disagreement in case you wish to take the issue to due process.

Make Friends. . . at school. Always support your school and teacher. Be the room mother, volunteer to help whenever you can. If you are respected as a supporter of the school, you are more likely to be respected at the IEP. Let people know you appreciate them, make positive comments. A few kind words can only open doors for you and your child.

Keep Your Cool. . . Angry parents are sometimes written off. Although anger is sometimes needed to get your point across, remember, parents who lose their temper are quickly labeled as uncoopera- tive and unreasonable which can make it easier for personnel to gather others against your ideas and concerns.

Keep Records. . . Put it on paper. Maintain records for your child. Put all your correspondence in the file. Make every IEP request in writing and ask for a written response. Check every so often to see if your correspondences are included.

End Your IEP. . . with a good check up. At the end of the IEP, make sure all of your points have been included. Check up on the promises, goals, and objectives that were agreed upon at the meeting. It is your job to monitor the IEP plan.