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Children with Special Needs: Helping Families Access Services and Information

March 2003

An overwhelming number of foster and adopted children have a variety of special needs, and parent groups often have to address the many issues related to those special needs. As a group leader, your role is to provide group members with information on where to get reliable, comprehensive resources and where to find training opportunities from qualified experts who also understand the issues of adoption. You don’t have to be an authority on attachment, fetal alcohol syndrome and effects (FASE), attention deficit disorder (ADD/ADHD), or any of the complex special needs common to adopted and foster children to help families in your group. Your group can do a variety of things to increase the effectiveness and quality of the services you offer to parents by creating a resource library and a directory of local and regional services, hosting a training for families, sending parents to training, by periodically providing current information and new resources at your meetings, and facilitating group discussions on a variety of special needs topics.

Building a Resource Library

The first step toward providing resources to your members is to have your group gather quality books, magazines, articles, videos, and materials from web sites that provide information on the most common special needs for adoptive and foster families. The most common issues that affect many foster and adopted children are attachment, FASE, ADD/ADHD, learning disabilities, and behavioral, emotional, and mental health problems. As you build your library, gather other specialty resources that reflect the specific needs of your group. For example, if a group member’s child is autistic, include resources on that topic too. Listed in the insert are resources that experienced parents who have children with special needs have found useful, practical, and easy to apply to family life.

One way to build your group’s resource library is to ask each member to choose a different book to donate to the group. To expand your library, you can have an annual group anniversary party where everyone brings a new resource to add to your collection. Members who have access to the Internet can make copies of some of the most useful information on web sites to share with those who are not connected to the Internet. Search out local, regional, and state- or province-wide brochures from adoption or foster care related services, support organizations, and from doctors’ and therapists’ offices.

As part of the library, you should create a directory that provides contact information for quality local and regional support services for:

  • qualified doctors and therapists who understand the issues of adoption
  • regional, state, provincial, and national advocacy organizations
  • county and private agencies
  • adoptive and foster parent support group information
  • training on specific topics helpful to foster and adoptive families

Once your group develops your resource library and directory, organize a way to pack and carry everything when your group travels (such as a rolling suitcase). Some rural groups trade off meeting in different members’ homes and need an easy way to transport the resources from place to place. Other groups need a handy way to store and transport materials when they run a booth at a conference or other adoption or foster care events.

Developing Your Group’s Training Potential

Think Broadly

It is important to widen your scope and see the training possibilities and support your group can receive outside your immediate area. Some groups get locked into thinking they have limited resources and can only take small steps toward helping the families in their area. Sometimes groups outside a major metropolitan area complain there aren’t any experts in their community, when in fact experts are an hour or two away by car and would be more than willing to provide training.

One way to ensure that your group can bring in an expert from out of town is by partnering with other groups in your area. Several groups can pool their resources to plan a training in a central location and divide the costs. Gathering a larger audience for the training can make it more attractive to the speaker and more affordable for families.

Keep in touch with groups in your area, region, state, or province and discuss other ways you can unite efforts to provide services to families. Be open to learning from each other. Some groups have great tips for how to provide support to families and other groups are talented in planning strategies to access services.

Choosing a Speaker

When you choose a speaker, look for an informed expert who is also a dynamic speaker and will relate to your audience. Some people have a clear understanding of the material they are presenting, but aren’t good speakers. Make sure you are clear about the depth and scope of the topic you want that person to cover. You can survey your audience prior to the presentation to get accurate information on what will best meet their needs and inform the speaker in advance.

If you are unsure where to find a speaker, ask people you respect to recommend quality presenters they have heard. Survey other parent group leaders and members, call county and private agencies and advocacy organizations like NACAC to get recommendations of quality speakers you can afford. Some speakers will speak pro-bono and others will charge a fee. You will have to weigh quality with what you can afford. Sometimes speakers will trade time and skills if you can provide them with an equally valuable service.

Using Videos

When you use a video, make sure your purpose is clear and reflects the needs of the group. Set high standards and only use quality videos. Take time to preview the video first to make sure the content contains current, accurate information. As you preview the tape, create an outline of main ideas to help the audience track the important points of the video. Write a list of open-ended questions you can ask to stimulate discussion after the group watches the video. The video should teach new information, stimulate group discussion, and help develop group problem-solving skills.

Encouraging Parents to Get Information

Parent group leaders should encourage parents to get as much background information as they can about their children. This should happen before the adoption, but if it didn’t, tell parents to go back to their agency and get more information. Make sure there are no gaps in the information and if there are, insist on knowing what happened during that time period. Share these questions with parents in your group:

  • Where was my child during the first two years of life?
  • How many moves did my child have in foster care?
  • Can I talk to the foster parents to learn more about my child’s past?
  • Is there a history of mental illness or other medical problems in my child’s birth family?
  • Is there a record or signs of alcohol use or drug abuse during pregnancy?
  • Was my child born prematurely?
  • Were there signs of abuse or convictions for abuse against my child?

You will also want to get information on your child’s educational history, medical records, and a social history from your agency.

Helping Parents Choose a Good Therapist

Set aside some group time for parents to discuss how to choose a good therapist. Allow group members who have found good therapists a chance to speak at the meeting. Facilitate group discussion and develop a list of tips for what to look for in a good therapist. Remind parents that they are in a position of power when they are choosing a therapist and they should:

  • Take the time to interview more than one therapist.
  • Look for a therapist who understands the seven core issues of adoption (listed below).
  • Make sure the therapist values the attachment you already have with your child and is willing to nurture and reinforce it.
  • Choose a therapist who knows when to work with the whole family and values the family (not the therapist’s office) as a place where children heal.

Providing Parent-to-Parent Mentoring

One group strategy to help new parents who may be struggling raising a child who has special needs is to establish a parent-to-parent mentoring program. For example, parents who have successfully helped their child bond can be partnered with parents who are raising a newly adopted child who is fearful and resisting forming an attachment. Sometimes a behavioral incident that is viewed by a new parent as being a crisis is clear evidence to the mentor that progress is being made and the child is beginning to bond, but still feels afraid. These mentoring relationships are usually mutually beneficial. Many experienced mentors enjoy sharing the wisdom they worked hard to learn but also learn valuable information from the parents they mentor.

Using Meetings to Help Parents

Talk about Child Development

It is important for parents to periodically review normal child development to understand how special needs can affect a child’s development. Most children with special needs have developmental delays, learning problems, and require special care. It is important to provide group meeting time to review various special needs diagnoses, help parents realistically assess their children’s developmental ages, and plan strategies for how best to deal with behavior and learning problems.

Parents can easily lose track of what is normal for their individual child. For example, new parents may notice that their recently adopted eight-year-old struggles with sharing, is clingy and staunchly independent, and continually tells lies. They may realize their child is not acting like other eight-year-olds and become overly worried about their child. A child, however, may be delayed and act more like a four-year old. It is normal behavior for four-year-olds to have trouble sharing and to experiment with lying. This is the age where children learn how to share and to distinguish between the truth and lies. Any trauma experienced when the child was four can delay learning these skills.

Parents can offer each other support for accepting children at their developmental age and share strategies for helping their children learn and grow.

Encouraging Parents to Care for Themselves

Many foster and adoptive parents focus solely on what they have to do to take care of their family. One of your roles as a leader is to help parents remember they need to take care of themselves first, because their children need them to be up to the challenge of parenting. A burned-out parent is too easily depleted of the energy needed to raise children. Think of creative ways your group can promote self-care skills among your members.

Maybe your group can begin each meeting asking what parents did during that month to take care of themselves. Award a prize to the parent who has modeled the best self-care habits during a three- to six-month period. Make a group pact to:

  • surround yourselves with support by talking to friends on a regular basis and not isolating yourselves when you experience problems
  • take time in your day or week to get regular exercise
  • use respite care on a regular basis if necessary
  • take a vacation
  • protect your personal time (even if it is just a daily soak in the tub)
  • set realistic expectations
  • learn to say no and avoid adding more duties to an already busy life

Sharing Success Stories

Parents need to know their children can heal from trauma and their family can build a trusting, loving bond. Plan a group meeting where each family shares a success story. Those who are in crisis can share small steps toward resolution and peace or just listen to how things improved in other families.

Some groups write their success stories and put them in a notebook for families to read as needed. You can ask parent groups in your region to contribute stories to be compiled into a book. A wider variety of stories is more likely to strike a chord with more families. It is good to tell and celebrate the hopeful stories that demonstrate family success.

Another way to focus on the positive is to bring in adults who have lived with some of the same disabilities your children have, such as ADD/ADHD. Ask them to speak about how they learned to cope with their problems and their transformation into the person they are today. It is good for parents to see how children with special needs can make choices for their future to reach their potential.


Labels are for Jars Not Children

Parents usually don’t mean to talk about their children in terms of their diagnoses, but it happens sometimes when they want to quickly convey the daily problems they cope with as they parent. As a group leader, gently remind parents to avoid describing children as a series of acronyms such as RAD, ADHD, FAS, and EBD. These labels help children qualify for services and give parents a starting point for finding help, but children are much more than their diagnoses.


Seven Core Issues of Adoption

The parent and child in an adoptive family have an unshared genetic and social history that professionals must take into account when planning intervention strategies. The most helpful therapists and experts are those who understand the seven core issues of adoption and know that they resurface often in the lives of any member of the adoption triad. The following information has been adapted from the work of Deborah N. Silverstein and Sharon Kaplan. Although their work specifically relates to adoption, much of the information can also be applied to foster children.

  • Loss. Adopted children morn the loss of their birth parents, even when they are happy with their adoptive family. Their loss can feel more prominent at various developmental stages, but especially as a teenager or young adult.

  • Rejection. Adopted children often feel rejected by their birth parents and subsequently avoid situations where they might be rejected or provoke others to reject them to validate their negative self-perceptions.

  • Guilt/Shame. Adopted children often believe there is something intrinsically wrong with them and that they deserved to lose their birth parents, which causes them to feel guilt and shame.

  • Grief. There is no ritual to grieve the loss of a birth parent. Suppressed or delayed grief can cause depression, substance abuse, or aggressive behaviors.

  • Identity. Adopted children often feel incomplete and at a loss regarding their identity because of gaps in their genetic and family history.

  • Intimacy. Many adopted children–especially those with multiple placements or histories of abuse–have difficulty attaching to members of their new family. Early life experiences may affect an adopted child’s ability to form an intimate relationship.

  • Mastery and Control. Adopted children sometimes engage in power struggles with their adoptive parents or other authority figures in an attempt to master the loss of control they experienced in adoption.

Resources

Attachment

Attaching in Adoption: Practical Tools for Today’s Parents, Deborah D. Gray, Perspectives Press, Inc., Indianapolis, IN, 2002.

Attachment, Trauma, and Healing: Understanding and Treating Attachment Disorder in Children and Families, Terry M. Levy and Michael Orlans, Child Welfare League of America Press, Washington DC, 1998.

Building Bonds of Attachment: Awakening Love in Deeply Troubled Children, Daniel A. Hughes, Jason Aronson Inc., Northvale, NJ.

Facilitating Developmental Attachment, Daniel A. Hughes, Jason Aronson Inc., Northvale, NJ, 2000.

Fostering Changes: Treating Attachment-Disordered Foster Children, Richard Delaney, Walter Corbett Publishing, Fort Collins, CO, 1991.

When Love Is Not Enough: A Guide to Parenting Children with RAD–Reactive Attachment Disorder, Nancy Thomas, (Order from Families By Design, P.O. Box 2812, Glenwood Springs, CO.)

Raising Children Who Refuse to be Raised: Parenting Skills and Therapy Interventions for the Most Difficult Children, David Ziegler, Ph.D., SCAR/Jasper Mountain, Jasper, OR, 2000.

The Association for Treatment and Training in the Attachment of Children (ATTCh), www.attach.org

Child Trauma Academy, www.childtrauma.org

ADD/ADHD

Attention Deficit Disorder Sourcebook, edited by Dawn D. Matthews, Omnigraphics, Detroit, MI, 2002.

How to Reach and Teach ADD/ADHD Children, Sandra F. Rief, Jossey-Bass, 1993. (To order call: 800-288-4745: Item 087 6284136)

Living with ADHD: A Practical Guide to Coping with Attention Deficit Hyperactivity Disorder, Rebecca Kajander, C.P.N.P., M.P.H., distributed by Park Nicollet Health Source, Minneapolis, MN. (800-372-7776)

Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD), www.chadd.org

FAS/E

Children with Fetal Alcohol Syndrome: A Handbook for Parents and Teachers, Larry Burd, Ph.D., 1999. (Must be ordered from: Larry Burd, 1300 S. Columbia Road, Grand Forks, ND.)

Fantastic Antoine Grows Up: Adolescents and Adults with Fetal Alcohol Syndrome, edited by Judith Kleinfeld and Siobhan Wescott, University of Alaska Press, Fairbanks, AK (907-474-6389).

Fantastic Antoine Succeeds: Experiences in Educating Children with FAS, edited by Judith Kleinfeld and Siobhan Wescott, University of Alaska Press, Fairbanks, AK (907-474-6389).

Fetal Alcohol Syndrome and Fetal Alcohol Effects, Minnesota Department of Health, St. Paul, MN, 1999.

Fetal Alcohol Syndrome and Fetal Alcohol Effects, Diane Malbin, Hazelden Books, Minneapolis, MN, 1993.

Recognizing and Managing Children with Fetal Alcohol Syndrome/Fetal Alcohol Effects: A Guidebook, Brenda McCreight, Child Welfare League of America, 1997.

The ABCs of FAS/FAE: Teachers Guide and Resource Booklet, www.lcsc.edu/education/fas/FAS.html

Fetal Alcohol Syndrome, www.come-over.to/FAS/

Parenting Children with Special Needs

A Child’s Journey through Placement, Vera Fahlberg, Perspectives Press, Inc., IN, 1991.

A Parent’s Guide to Understanding Sensory Integration, Sensory Integration Intervention. (Call 310-320-9986 to order.)

Adopting and Advocating for the Special Needs Child, L. Anne Babb and Rita Laws, Bergin & Garvey, Westport, CT, 1997.

Adopting the Hurt Child, Gregory Keck, Ph.D. and Regina Kupecky, L.S.W., Piñon Press, Colorado Springs, CO, 1995.

The Healing Power of Families, Richard J. Delaney, Ph.D., Wood ‘N’ Barnes Publishing, Oklahoma City, OK, 1995.

Helping Children Cope with Separation and Loss, Claudia Jewett, Harvard Common Press, Harvard, MA, 1994.

Grandparents as Parents: A Survival Guide for Raising a Second Family, Sylvie DeToledo and Deborah Edler Brown, The Gilford Press, New York, NY, 1995.

Parenting the Hurt Child, Gregory Keck, Ph.D. and Regina Kupecky, L.S.W., Piñon Press, Colorado Springs, CO, 2002.

Parenting Your Adopted Older Child, Brenda McCreight, Ph.D., New Harbinger Publications, Inc., Oakland, CA, 2002.

Safe Passage: A Summary of the Parent 2 Parent Mentoring Program, Richard J. Delaney, Ph.D., Wood ‘N’ Barnes Publishing, Oklahoma City, OK, 2000.

Small Feats: Unsung Accomplishments and Everyday Heroics of Foster and Adoptive Parents, Richard J. Delaney, Ph.D., Wood ‘N’ Barnes Publishing, Oklahoma City, OK, 2002.

Troubled Transplants: Unconventional Strategies for Helping Disturbed Foster and Adopted Children, Richard J. Delaney, Ph.D., and Frank R. Kunstal, Ed.D., Horsetooth Press, Fort Collins, CO, 1993.

Scholastic, www.teacher.scholastic.com/professional/bruceperry/index.htm (Internationally known Dr. Bruce Perry lists his published articles on topics such as brain development, attachment, and learning strategies. They are available to be copied by teachers and parents.)

Videos

Multiple Transitions: A Young Child’s Point of View on Foster Care, Michael Trout, The Infant-Parent Institute, Champaign, IL.

Parent to Parent Video: A Mentoring Program, Richard J. Delaney, Ph.D., Wood ‘N’ Barnes Publishing, Oklahoma City, OK, 1999.

Rebuilding the Broken Bond #1: For Reactive Attachment Disorder, Nancy Thomas, P.O. Box 2812, Glenwood Springs, CO, 1998.

Rebuilding the Broken Bond #2: For Reactive Attachment Disorder, Nancy Thomas, P.O. Box 2812, Glenwood Springs, CO, 1998.

Redefining Success: Raising Children Exposed Prenatally to Alcohol, Ministry of Children and Family Development, British Columbia, Canada, 2001.

Re-Education of Foster and Adopted Children: Prospects for a Healthy Life, by Vera Fahlberg, M.D., (70-minute video & viewer’s manual or DVD & viewer’s manual)

Safe Environment for Foster Children Parts I & II: Managing Acting Out Behavior, (41 min. video and viewer’s manual)

Safe Environment for Foster Children Part III: A Time and Place for Healing with Dr. Vera Fahlberg, (40 min. video and viewer’s manual)

Tender Healing, by Vera Fahlberg, M.D. and Richard J. Delaney, Ph.D., (45-minute video) (To order call 800-777-6636 or www.sociallearning.com)


North American Council on Adoptable Children (NACAC)
970 Raymond Avenue, Suite 106
St. Paul, MN 55114
phone: 651-644-3036
fax: 651-644-9848
e-mail: info@nacac.org
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