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Special needs of grieving children who have special needs- the forgotten mourners

 

So often children with special needs or children with handicaps or impairments become the forgotten mourners. These children are no strangers to loss. They live with loss of abilities,  loss of respect at times, loss of esteem at times, and often loss of the opportunity to mourn their losses. Please let us remember that children with special needs still need us to be honest, present and available to them after a loss. Allow them to express themselves in their own ways. Some children feel more comfortable speaking about loss, while others use art, photography, their tears, photos, and more to express themselves. Children tend to regress after a loss. They need more comfort, attention and affection at this time. Please see them as you would see anyone else who has experienced a loss of someone or something important in their lives.

 On Autism: Society has been slow to recognize and appreciate that people with autism experience the pain and loss in similar ways to other people. So often people act as if those with learning disabilities in general are incapable of feeling loss. We tend to view their pain as invisible or as an illness or we think that they are acting out when actually they are just facing the same issues that we all face. Yet research has shown that people with autism have the ability to express emotional behavior due to loss, through a mixture of sadness, anger, anxiety, confusion and pain (Harper and Wadsworth, 1993). 

" I don't really understand what death is and I wasn't allowed to go to my mom's funeral because they said I was acting silly." Frances, a person with autism

Being left out of important death rituals has been a common occurrence for people who have learning disabilities. Religious and cultural rituals invest death with meaning. In some cultures, funerals provide a social sanction for the outward expression of grief. Sheldon) 1998) argues that repeated explanations and supported involvement in funeral rituals ( such as funeral attendance or visits to the grave) have been shown to reduce repetitive questions about where the dead person is, and subsequently challenging behavior. Non-participation in rituals can delay the grief process. It also removes the opportunity for the person to receive social support from networks of relationships. Many with learning disabilities are left out of the planning and organizing of the funeral.  People with autism, whose senses define their experiences of physical contact with others or with objects, depend on the security of familiarity. This may be affected by a death. Due to the difficulty of finding the words to express emotions, goodbye rituals are very important. Those with autism go through a grief process similar to those with learning disabilities but tend to be more impulsive in their reactions. 

Knowing how much information to give to a person with learning disabilities is difficult. If given too much or too little, they may not be able to voice their concerns or ask the right questions. 

Things to Do When Talking About a Loss With Someone With Autism:  (Excerpts from Autism and Loss by Forrester-Jones and Broadhurst)

 

  •  Sit at eye level and along side them
  • Speak at a similar speed to which the person speaks
  • Tell the person they will be listened to
  • Allow the person to ask questions
  • Answer questions immediately
  • Accept answers given
  • Accept their feelings
  • Be able to say 'I don't know'
  • Allow enough silence to enable the person to express feelings and thoughts
  • Check back with the person that you understood what they said by reporting it to them in a different way
Things to Say When Talking About Loss:
  • 'Other people feel the same way.'
  • 'Your feelings are normal.'
  • 'I know that you feel sad, angry, lonely, scared,,,etc.'
  • Respond to comments by saying, 'yes, right, I understand'
  • Conversations need to have a clear structure, be focused and directed towards a definite goal, conducted according to a set plan. "We will talk about this later, we need to finish this first. I will take a note of that question and we can get to that another time." 

 

Things Not to do when talking about loss:

 

  •  Keep asking, 'Do you understand?'
  • Ask multiple questions
  • Interrupt when they are talking about their experience
  • Ask closed questions
  • Say, 'You'll get over it in time.'
  • Say, 'Don't cry' or 'Don't be angry'
  • Say, 'I know how you feel'

 

When to refer someone with autism to a professional to address bereavement:

  •  they deny that anyone has died, or act as if nothing has happened
  • they threaten or talk of suicide (this is particularly difficult since many people with autism suffer from depression and may generally have thoughts of suicide)
  • they become unusually and persistently aggressive or engage in anti-social behavior
  • they become withdrawn and socially isolated

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MOM 2 MOM

Peer support helpline

877-914-MOM2 (6662)

 

 

Welcome to a new and exciting resource for Essex and Union Counties in New Jersey. Mom 2 Mom is a 24 hour peer support helpline for Moms of children and adults with developmental disabilities living in Essex and Union County.

 

If you are the Mom of a developmentally disabled child or adult and may be in need of talking to another Mom of a disabled child or adult, then Mom 2 Mom is for you.  24/7 when you need someone to talk to Mom 2 Mom will be there.  Just a phone call away at (877) 914 MOM2 (6662) you can give us a call and we will be there for you.

 

Phone line available on 10/10/10

 

For further information contact:

 

B. Madeleine Goldfarb, MA

Director of Outreach and Education

The Autism Center

UMDNJ New Jersey Medical School

(973) 972-9422

goldfabm@umdnj.edu

 

 

 

 

The “MOM 2 MOM” Helpline Program Summary

University of Medicine & Dentistry of New Jersey

University Behavioral HealthCare

Introduction

 

When you become a parent it is often a defining and miraculous experience in your life. When your child is identified as having a developmental, intellectual or physical disability, it is potentially the most devastating and debilitating experience of your life. Innately as mothers and fathers we see our role as the caregiver to “fix” everything for our child. Some challenges cannot be fixed, but rather adapted to and herein lies the need for the “MOM 2 MOM” Program.

 

Over the years an abundance of resources for children with intellectual and developmental disabilities have been established with a focus on advocacy, education, and financial support for our loved ones with “special needs”. The missing link in all of these however has been the recognition for services for the primary caregiver’s mental health and wellness, specifically a service for mothers.

 

Mothers with special needs children are at risk for depression and related disorders (Reuters, 4/18/2008).  In addition, several studies have indicated that parents of special needs children have significantly higher divorce rates than those with typically developing children. Co-morbid medical illness, financial stressors, faith based challenges, and employment struggles persist with the challenges of being a primary caregiver of a developmentally disabled child.

 

The MOM 2 MOM Program

As both a clinician and parent of a developmentally disabled child, the need for mental health support for me and my family has been impossible to find. Across the country, clinically peer based programs are offered with marked success for mothers suffering from post partum depression, fighting cancer, even NICU mothers have come together for support via helplines and chat rooms. The Cop 2 Cop program, Vet 2 Vet program, and several others at UMDNJ – University Behavioral Healthcare will serve as successful models for the “MOM 2 MOM” program. The “MOM 2 MOM” program will utilize the concept that the best support may be a peer, someone who has “walked the walk”.

 

Utilizing the national data set which reflects that an estimated one percent of the population of the United States will be diagnosed with a developmental and/or intellectual disability, an estimated 80,000 mothers and families in New Jersey will be impacted.  An equal number in our state are estimated to have children with physical disabilities and could also benefit from the MOM 2 MOM program.

 

The “MOM 2 MOM” Program Components

 

By dialing the 1-800-MOM-2MOM helpline program a mother of a child with special needs will receive the following services;

 

Mom 2 Mom Peer support-

 

Mom 2 Mom Peer Supporters will be available 24/7 to provide telephonic peer support to callers in need. Moms of  special needs children will be trained in peer counseling and the crisis call model to offer unlimited peer support, explain resources, and explore the caller’s needs.

 

Mom 2 Mom Clinical Assessment

 

Mom 2 Mom Clinicians will be available as needed on the helpline as part of team of clinical professionals able to do telephonic assessment to gage depression, anxiety, and family & marital issues, etc.

 

MOM 2 MOM Network

 

Clinical providers will receive ongoing information and training opportunities to ensure they are apprised of the latest clinical implications and treatment options for mothers and families of children with special needs. State and regional

MOM 2 MOM Support Groups

 

Opportunities to establish Mom 2 Mom support groups will be offered as another outlet for mental health and wellness.

 

MOM 2 MOM Case Management

 

Mom 2 Mom Case Managers will be assigned to each caller to address global issues involving special needs children care giving challenges, Dads needs, sibling issues and liaison services for the family will all be provided as needed.

 

Research & data collection for quality assurance

 

Each caller will receive a customer satisfaction survey ten days from their original call to assess the services provided and continue case management as needed. A comprehensive MIS system and Automated Call Distribution system will be accessed for trending and tracking needs and service provision in the Mom 2 Mom program.

 

 

 

 

 

 "Nothing that grieves us can be called little; by the external laws of proportion a child's loss of a doll and a king's loss of a crown are events of the same size."  Mark Twain, Which was the Dream? (1897) 

 Supporting individuals to develop coping strategies:

Listen, read cues, intervene, ask how the person feels, talk about the deceased, and explain the grieving process. Making memory books that include photographs, pictures or objects of reference, such as a memento of the deceased person, are useful in enabling positive memories to be discussed. Writing letters, drawing pictures or playing songs that the loved one enjoyed can also help some people. Keeping a feelings journal helps with dealing with feelings. Commemorating events such as anniversaries, birthdays, by developing a ritual ( putting flowers by the grave,  baking a cake, visiting the place where the ashes were scattered, making a memorial by planting a tree or flower bed or sending the person a card) can help provide the person with autism an appropriate time to remember the deceased. This can also help with managing obsessive  behaviors.  

External support can be very helpful as well. People with autism associate particular roles with specific people (vicar with funeral) so one way to stop some of the obsessional preoccupation with death is to confine talking about the subject to the appropriate person (Raji and Hollins, 2003). When appropriate, form a circle of support, open to all people who have been bereaved, where an understanding of loss and emotional responses can be taught and ways of coping developed, or encourage them to join local support groups. Helping them to find supportive friends will also be helpful. 

Continue routines as much as possible. Keep decision making to a minimum, allowing them to relinquish responsibilities if they need to. Returning to work or to school or to a day center after a bereavement can be very stressful for people with autism. For some a structured time table can offer relief and security from the overwhelming painful situation at home, while for others it increases their anxiety about the grieving parent left, perhaps alone at home. 

It is common that anger may be directed at the one who died for abandoning the bereaved. It may also be directed at the one who delivered the bad news or it may be generalized. Anger may arise when activities provided by the deceased are no longer available. Allow individuals opportunities to express their anger without harming themselves or others, or damaging property. Exercise helps, as does a Scream Box (see page on how to make a Scream Box) or punching a pillow or beating on a drum set. 

Don't be surprised if the individual doesn't react at all initially, or reacts in what you would interpret as an inappropriate way (Read, 1998).  

 

 

Autism is a developmental disorder appearing in early childhood. Treatment is possible, often with significant results when begun early.

Kids Learning & Education-12

To spot early signs of autism, it helps to first know what the condition is. Autism is a term for a broad spectrum of behavioral defects that become apparent in early childhood, typically by the age of three years. Autism has a wide variety of symptoms and severity. The prevalent problem is a child’s inability to communicate and interact with others.

In the United States, it is thought that 3% to 6% of children are afflicted with autism. Although the causes of autism are still unknown, studies indicate that early and intensive intervention may significantly improve the lives of many affected children.

Early Signs of Autism
Babies and toddlers grow and develop along a series of milestones that, although general, are predictable. When a child is autistic, either the milestones are not met or the child begins to lose the progress made in language development. Autistic children will often stop making eye contact. They retreat into their inner world and may adapt any number or combination of behaviors, such as—

  • repetitive rocking, clapping, hand flapping or spinning
  • failure to respond to his or her name
  • resisting affection
  • singsong or inflectionless speech
  • inability to have a conversation
  • constant movement
  • fascination with moving wheels, light-catching objects or patterns
  • high sensitivity to light, touch and sound
  • insensitivity to pain
  • no fear of danger
  • limited interaction, such as not responding when a story is read

Types of Autism
There are five disorders that fall under the autism spectrum. All share the characteristics of impaired communication, reduced social interaction skills and limitations in interests and activity.

  1. Autism, also known as Autistic Disorder
  2. Asperger’s Syndrome: Language skills continue to develop, yet the child becomes obsessed with a single topic, wanting to know everything about it and fixated on it. Repetitive and socially inappropriate behavior, strange words and lack of coordination are other distinguishing features.
  3. Pervasive Developmental Disorder (PDD): This is a milder form of autism typically diagnosed in children under the age of 5 when the full set of autism symptoms are not present. Children with PDD have some difficulty with language and interaction with others and may resist changes in familiar routines.
  4. Rett’s Disorder: Most commonly occurring in girls, these children lose communication skills between the ages of one and four years. Their hands move repetitively rather than purposefully.
  5. Childhood Disintegrative Disorder: These children show normal development for the first two years or more, and then communication and social skills degenerate.

Diagnosing Autism
Researchers have developed several methods for detecting autism with screening tools. If the child’s pediatrician has diagnosed with the modified checklist for autism in toddlers (M-CHAT), he may recommend further testing with a scale to determine the severity of the autism. The scale, known as the Childhood Autism Rating Scale (CARS), is a direct observation tool and is the most common tool for assessing autism in children as young as two years. There are 15 items evaluated through this scale:

  • relationships with people
  • imitation
  • affect
  • use of body
  • relation to non-human objects
  • adaptation to environmental change
  • visual responsiveness
  • auditory responsiveness
  • near receptor responsiveness
  • anxiety reaction
  • verbal communication
  • nonverbal communication
  • activity level
  • intellectual functioning
  • clinician’s general impression.

The CARS gives a severity rating and helps to determine areas of focus for treatment. It also aids professionals in making decisions regarding treatment options.

 

Resources:  books, organizations serving people with special needs:

 Autism and Loss by Rachel Forrester-Jones and Sarah Broadhurst 2007, (a resource for professionals and anyone who works with people with autism who are coping with any kind of loss.) 

 The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs   by  Denise Brodey (2007). This book discusses special needs of children including: ADD,ADHD, sensory disorders, childhood depression, Asperger's syndrome, autism, and physical and learning disabilities, as well as kids who fall between diagnoses.  Stories from Florida to Alaska, children ages 3-33, the parents address a range of issues that affect the lives of families with children with special needs.  "Until the day when every baby is born healthy, it's vitally important for parents to be informed and be connected with others in similar circumstances. Denise Brodey performs a great service for the special needs community letting parents know that they are not alone in their struggles." Dr. Jennifer L.Howse, president of the March of Dimes Foundation  

Living with Loss: Helping People with Learning Disabilities Cope with Bereavement and Loss, 1999, Blackman, N

Asperger's Syndrome: A Guide for Parents and Professionals, 1998, Attwood, T 

Views from Our Shoes: Growing up with a Brother or Sister with Special Needs:   Edited by Donald Meyer . 45 siblings share their experience as the brother or sister of someone with a disability. The kids essays range in age from 4-18 and are siblings of youngsters with a variety of special needs, including:autism, ADD,cerebral palsy, developmental delays, hydrocephalus, visual and hearing impairments, Down and Tourette syndromes. A glossary of disabilities provides easy to understand definitions of many of the conditions mentioned.

Special Brothers and Sisters: Stories and Tips for Siblings of Children with a Disability or Serious Illness.edited by Annette Hames and Monica McCaffrey.  Young people explain in their own words what it is like to live with their brothers and sisters, and talk about their feelings of love and frustration, joy and sadness. It is full of tips and advice to help siblings cope with their feelings and with the other common issues surrounding disabilities and illness- long hospital visits, being stared at or bullied, playing differently. Provides explanation of medical words and description of disabilities. (ADHD, autism, cerebral palsy, cystic fibrosis and Down syndrome).

 

Children with Traumatic Brain Injury: A Parent's Guide  Edited by Lisa Schoenbrodt, Ed.D, CCC-SLP. This book covers diagnosis, rehabilitation, medical concerns, coping and adjustment, effects on learning, thinking, speech and language, effects on behavior and management strategies, preventing further injury, educational needs and legal issues. 

A Different Kind of Perfect: Writings by Parents on Raising a Child with Special Needs  edited by Cindy Dowling, Neil Nicoll, Bernadette Thomas. (2004) Stories are divided into chapters about grief, denial, anger, depression, acceptance, empowerment, marriage, family and friends, love and joy and spirituality and finally laughter. 

All Cats Have Asperger Syndrome  by Kathy Hoopmann(2006)  Touching, humorous and insightful, this book evokes the joys and challenges of raising a child who is different. It leaves the reader with a sense of the dignity, individuality and potential of people with Asperger syndrome. 

All Dogs Have ADHD by Kathy Hoopmann (2009)  Absorbing and insightful, this book takes a refreshing approach to understanding ADHD. It combines humor with understanding to reflect the joys and challenges of raising a child who is different. 

Don't Call Me Special: A Fist Look at Disability by Pat Thomas (2002)   A picture book that explores questions and concerns about disability in a simple and reassuring way. Younger children will learn what a disability is and how people deal with their disabilities to live happy and full lives. 

Please Stop Laughing at Me: One Woman's Inspirational Story (2003)  "This book could save your child's life. It's a must read for parents, educators and everyone concerned with the health and well-being of our children". John Bradshaw  "Please Stop Laughing at Me...will do for survivors of school bullying what Dave Pelzer's book A Child Called "It" did for child abuse." Jack Canfield.  "We've all seen the frightening results of school bullying. Please Stop Laughing at Me.. can help us prevent other teens from being harmed." -Dave Pelzer, author of A Child Called 'It'

 

 Suggested Books

Children’s Literature:

 

1.  Seskin, Steve and Shablin, Allen (2002).  Don’t Laugh At Me.  Tricycle Press Publishing.            (A story and music CD discussing no more bulling)

 

2.  Senisi, Ellen B. (2002).  All Kinds of Friends, Even Green!  Woodbine House Inc. Publishing.  (A child with spina bifida finds that he and an iguana have something in common)

 

3.  Parr, Todd (2001).  It’s Okay to Be Different.  Little, Brown and Company Publishing.  (Describes different types of differences and shows that it’s okay to be different.)

 

4.  Thomas, Pat (2003).  The Skin I’m In.  A First Look At Racism.  Barron’s Educational Series, Inc. Publishing.                        (Discusses racial prejudice)

 

5.  Moss, Deborah M. (1989)  Shelly The Hyperactive Turtle.  Woodbine House Publishing.  (Shelly begins to understand why he can’t sit still and seems different from the other turtles.  Shelly has a medical examination and receives medication to help him.)

 

6.  Polacco, Patricia (1998).  Thank You Mr. Falker.  Philomel Books Publishing.                       

(A teacher helps a student with learning disabilities  understand and find strategies.)

 

7.  Riggio-Heelan, Jamee OTR/L (2002).  Rolling Along:  The Story of Taylor and His Wheelchair.  Peachtree Publishing. (A child with cerebral Palsy discusses when he got his wheelchair and the difference it made) 

 

8.  Riggio-Heelan, Jamee OTR/L (2002).  Can You Hear a Rainbow?  The Story of a Deaf Boy Named Chris.  Peachtree Publishing.  (A story about a child who is deaf and how he uses multiple ways to communicate) 

 

9.  Skutch, Robert (1995).  Who’s In A Family?  Tricycle Press Publishing.  (Different types of human and animal families are discussed.) 

 

10.  Hallinan, P.K. (1994).  A Rainbow of Friends.  A Book to Celebrate Diversity.  Ideals Children’s Books Publishing.              (A story about differences, showing how all people are special and valuable.)

 

11.  Rickert, Janet Elizabeth (2000).  Russ and the Almost Perfect Day.  Woodbine House Publishing.  (Russ, a child with Down’s syndrome finds money and has an almost perfect day.)

 

12.  Curtis, Jamie Lee and Cornell, Laura (2002).  I’m Gonna Like Me.  Letting Off a Little Self-Esteem.  Joanna Botler Books, an Imprint of Harper Collins Publishers.

(A story about liking who you are)

 

13.  Brown, Tricia (1984).  Someone Special, Just Like You.  Henry Holt and Company Publishing.  (Photographs and stories about children with disabilities)

 

14.  Meyer, Donald (Edited by) (1997).  Views from Our Shoes.  Growing Up with a Brother or Sister with Special Needs.  Woodbine House Publishing.            (A series of short stories written by siblings of children with special needs.)

 

15.  Newman, Leslea (2000).  Heather Has Two Mommies.  Alyson Publishing.     (Heather and other children in her play group draw pictures of their families and learn that families can all be different, but the important thing is that all the people in the family love each other.)

 

16.  Mayer, Gina and Mercer (1992).  A Very Special Critter.  Western Publishing Company, Inc.              (A Golden Book.  A new ‘critter’ joins the class who uses a wheelchair.  The students learn that they all can do things and everyone needs help sometimes.)

 

17.  Rogers, Fred (2000).  Let’s Talk About It:  Extraordinary Friends.  Puffin Books Publishers.  (“Mister Rogers challenges the stereotypes that often plague children with special needs, and celebrates six children who are extraordinary friends.”  There are photographs of children with tilt in space wheelchairs and AAC systems)

 

18.  Lears, Laurie (2005).  Nathan’s Wish – A Story about Cerebral Palsy.  Albert Whitman & Company Publishers (Nathan suggests options to help an Owl do something important and finds that this helps him develop a plan for himself.)

 

19.  Willis, Jeanne (2000).  Susan Laughs.  Henry Hold and Company Publishers (“Susan laughs, she sings, she rides…Susan is no different from any other child.”  The last page shows Susan in her wheelchair.)

 

20.  Mitchell, Lori (1999).  Different Just Like Me.  Charlesbridge Publishers (“…April encounters all sorts of different, interesting people, and soon she is at her grandmother’s house admiring the beautiful flower garden.  By the time April returns home, she has discovered something important:  People – like flowers – have different needs and come in many colors, shapes, and sizes.  But when you look past those differences, you see how similar they really are.”  Includes people with special needs)

 

21.  Thomas, Pat (2000).  Don’t Call Me Special – A First Look at Disability.  Barron’s Books Publishers.  (“…explores questions and concerns about disability in a simple and reassuring way.)

 

22.  Rosenthal, Amy Krouse (2006).  Cookies.  Bite-Size Life Lessons.  Harper Collins Publishers.  (Using cookies, this book defines “fair”, “unfair”, “cooperate”, “patient”, “proud”, “modest”, “respect”, “trustworthy”, “compassionate”, “greedy”, “generous”, “honest”, “courageous”, “envy”, “loyal”, “open-minded”, “regret”, “content” and “wise.”)

 

23.  Snow, Judith E., MA (2004).  How it Feels to have a Gay or Lesbian Parent.  A Book by Kids for Kids of All Ages.  Harrington Park Press Publishers.

 

23.  Tax, Meredith (1981).  Families.  The Feminist Press Publishers.  (A book of different kinds of families – that ends with the importance of how much families love each other and not how big they are or where they love.)

 

24.  dePaola, Tomie (1979).  Oliver Button Is A Sissy.  Voyager Books – Harcourt, Inc. Publishers.  (Oliver is called a sissy because what he wants to do is different from the other boys.)

 

25.  O’Keefe, Susan Heyboer (2005).  Be the Star That You Are!  A Book for Kids Who Feel Different.  Abbey Press Publishers.  (a book to encourage acceptance while valuing and celebrating differences.)

 

26.  Shuman, Carol (2003).  Jenny Is Scared?  When Sad Things Happen In The World.  Magination Press Publishers.  (Without mentioning September 11, this book talks about children who are afraid because the parents are acting differently, only news is on the TV and routine things at home are not happening.  This book gives concrete suggestions to help children feel more safe in their world.)

 

27.  Backstein, Karen (retold by) (1992).  The Blind Men and the Elephant.  Scholastic Books Publishers.  (People who are blind try to describe the elephant through touch.  Because each only experiences one part of the elephant, they describe and come to different conclusions.  Only when you put all of the parts of the elephant together, do you understand who it is.)

 

28.  Shannon, David (1998).  A Bad Case of Stripes.  Scholastic Books Publishers.  (Camilla is worried about what other people think of her, so she doesn’t want to show who she really is.)

 

29.  Kehoe, Patricia, Ph.D. (1987).  Something Happened and I’m Scared to Tell.  A Book for Young Vicitms of Abuse.  Parenting Press Inc. Publishers.  (A child talks to a lion about what is happening.  The book explains that the child is not to blame, provides anatomically correct names for body parts and encourages talking to someone safe about what happened.)

 

30.  Parr, Todd (2002).  The Feel Good Book.  Little, Brown and Company Publishers.  (This book talks about what makes you feel good.)

 

31.  Parr, Todd (2003).  The Family Book.  Little, Brown and Company Publishers.  (Some families are alike and some are different.  This book talks about the different kinds of families.)

 

32.  Andrews, Beth (2002).  Why Are You So Sad?  A Child’s Book about Parental Depression.  Magination Press Publishers.  (“When a parent has depression, children often feel sad and confused themselves.  This interactive book can help.”)

 

33.  Friedrich, Molly (2004).  You’re Not My Real Mother!  Little, Brown and Company Publishers.  (“What makes a mother real?  Playing, Laughing, Teaching and Helping”.)

 

34.  Lears, Laurie (2002).  Becky The Brave.  A Story About Epilepsy.  Ablert Whitman & Company Publishers.  (A story of two sisters.  One sister has epilepsy and has a seizure in her class.  Her classmates do not know that she has seizures.)

 

35.  Kraus, Jeanne (2005).  Cory Stories.  A Kid’s Book About Living with ADHD.  Magination Press Publishers.  (Cory talks about how different he feels.  His parents take him to a doctor and Cory begins to understand about ADHD and learn different strategies.)

 

36.  Ada, Alma Flor (1995).  My Name is Maria Isabel.  Adaddin Paperbacks Publishers.  (Maria is in a new school, doesn’t know anyone, and the teacher won’t call her ‘Maria” because there are already 2 Maria’s in the class.  He calls her Mary.  Maria feels like she has lost a part of herself.)

 

37.  Stepanek, Mattie J.T.  (2001).  Heartsongs.  VSP Books Publishers.  (A book of poetry written and illustrated by Mattie.)

 

38.  Stepanek, Mattie J. T.  and Jimmy Carter (2006).  Just Peace.  A Message of Hope.  Andrews McMeel Publishing.  (A book of poetry, e-mails and messages from Mattie and Jimmy Carter.  This book was published after Mattie, age 13, died of a neuromuscular disease.)

 

39.  Talbott, Hudson (2000).  Forging Freedom.  A True Sotry of Heroism during the Holocaust.  G. P. Putnam’s Sons Publishers.  (This is the story of Jaap Pentaat who grows up in Amsterdam in the 1930’s.  Jaap devises ways to help people escape the Nazis.)

 

40.  Wilgocki, Jennifer and Marcia Kahn Wright (2002).  Maybe Days.  A Book for Children in Foster Care.  Magination Press Publishers.  (This book “addresses the questions, feelings, and concerns these children most often face.”)

 

41.  Osborn, Kevin (1991).  A Day in the Life of a Seeing Eye Dog Trainer.  Troll Associates Publishers.  (This book talks about the grooming, training and role of the seeing eye dog.  The trainer then helps the new owner of the  dog orient to life with a seeing eye dog.)

42.  Niner, Holly L. (2004).  Mr. Worry.  A Story About OCD.  Albert Whitman & Company Publishers.  (A child receives help for his OCD.)

 

43.  Lang, Glenna (2001).  Looking Out for Sarah.  Charlesbridge Publishers. (This story follows Sarah and her guide dog throughout the day.)

 

44.  Thomas, Pat (2001).  I Miss You – A First Look at Death.  Barron’s Publishers.  (This is a picture books about death for young children.)

 

45.  Shipon-Blum, Dr. Elisa (2003).  Understanding Katie.  Selective Mutism Anxiety Research and Treatment Center (SMart-Center).  (This story was written for young children who have Selective Mutism.  The pictures are black and white and children are encouraged to color the pages, while reading about others, like them, with Selective Mutism.)

 

46.  Lester, Julius (2005).  Lets Talk About Race.  Harper Collins Publishers.  (This is the story of the author – told in an effort to see that differences are merely in the details – and our lives are the same.)

 

47.  Speltz, Ann (2003).  The Year My Mother Was Bald.  Magination Press Publishers.  (This is a child’s journal the year that her mother had treatments for cancer.)

 

48.  Ackerman, Abigail and Adrienne (2001).  Our Mom Has Cancer.  American Canceer Society Publishers.  (Abigail and Adrienne – age 11 and 9 write and illustrate a story about their family when their Mother was diagnosed with cancer.)

 

49. Holmes, Margaret M.  (2000).  A Terrible Thing Happened.  Magination Press Publishers.  (This is a story about friends – all animals.  One of the friends can’t sleep and finds it hard to forget a terrible thing.  It is a story for children who have witnessed any kind of violent or traumatic episode – including abuse.)

 

50.  Newman, Leslea (2002).  Felilcia’s Favorite Story.  Two Lives Publishers.  This is a story about Felicia’s adoption by her two Moms.)

 

51.  Petty, Kate and Charlotte Firmin (1991).  Being Bullied.  Barron’s Publishers.  (This is a story about being bullied, which lists options of what can be done.)

 

52.  Gantos, Jack (2000).  Joey Pigza Loses Control.  Harper  Collins Publishers.  (This is a story about Joey’s vacation with his Dad.  Joey has ADHD and he wants to show his day that he is not as ‘wired’ as he used to be.)

 

53.  Davis, Diane (1984).  Something is Wrong At My House – A Book About Parent’s Fighting.  Parenting Press, Inc. Publishers.  (This is a book about domestic violence.)

 

54.  Woodson, Jacqueline (2005).  Show Way.  G. P. Putnam’s Sons, Publishers.  (This is a story of the quilts with secret meanings that were maps through the Underground Railroad.  “Each generation passes on to the next the belief that there is a road to a better place.”)

 

55.  Woodson, Jacqueline (2001).  The Other Side.  G. P. Putnam’s Sons, Publishers.  (A fence separates the black side from the white side of town.  Children have been told not to cross over the fence.  Slowly one child, then another, then another begin to sit on the fence.)

 

 

 

Other Books:

 

1.  Goffman, Erving (1963).  Stigma.  Notes on the Management of Spoiled Identity.  Simon & Schuster Inc. Publishing.

 

2.  Edwards, Betty (1979).  Drawing on the Right Side of the Brain.   Houghton Mifflin Co. Publishing.

 

3.  Williams, Donna (1992).  Nobody Nowhere.  The Extraordinary Autobiography of an Autistic.  Harper Collins Publishers.

 

4.  Cullum, Albert (1971).  The Geranium on the Windowsill Just Died, But Teacher You Went Right On.  Harlin Quist Publishers.

 

5.  Sienkiewicz-Mercer, Ruth and Kaplan, S. B.  (1989).  I Raise My Eyes To Say Yes.  Houghton Mifflin Publishing.

 

6.  Mairs, Nancy (1996).  Waist-High in the World – A Life Among the Nondisabled.  Beacon Hill Press Publishers

 

7.  Klein, Stanley D., PhD. and Schive, Kim (2001).  You Will Dream New Dreams – Inspiring Personal Stories by Parents of Children with Disabilities.  Kensington Books Publishers

 

8.  Strohm, Kate (2005).  Being the Other One – Growing Up with a Brother or Sister Who Has Special Needs.  Shambhala Publishers

 

9.  Klein, Stanley D. and Kemp, John D. (2004).  Reflections from a Different Journey.  McGraw Hill Publishers

 

10.  Long, Larry (Producer) (2003).   I Will Be Your Friend.  Songs and Activities for Young Peacemakers.  Southern Poverty Law Center.

 

 

11.  Teaching Tolerance Magazine.  A Project of the Southern Poverty Law Center.

 

 

12.  Newman, Cynthia MSW.LCSW, and Koplow, Lesley, MSW.CSW (2002).  Frequently Asked Questions Siblings Need to Know About their Brother or Sister with Special Needs.  New Jersey Cares REIC is a program of the Central New Jersey Maternal and Child Health Consortium, Inc.

 

 

Movies / Videos

 

1.  I Am Sam.  (2002).  New Line Home Entertainment Inc.

 

2.  The Eye of the Storm  (1970) – about prejudice

 

3.  My Left Foot  - about Christy Brown’s life (Cerebral Palsy)

 

4.  Fat City – video about learning disabilities

 

 

 

 

 

What Does That Mean: a few terms to help children understand what things mean:

ADHD:  (Attention deficit hyperactivity disorder)  People with ADHD are overactive and have difficulty concentrating, do things without thinking first and find it hard to wait their turn. Many people have problems like this some of the time, but people with ADHD have these problems nearly all the time.

Aspergers's syndrome:  People with Asperger's syndrome may have problems understanding others or knowing what to say to them. They can find it hard to know what to do when they are with people. They may not understand simple jokes or know how to use their imagination for things like pretend play.

Autism: When someone has autism, their brain works in a different way than other people's brains. People with autism have difficulty talking and understanding what others say, they find it hard to get on well with others; they think and do things in a rigid (fixed) way, like repeating the same actions over and over again, and they don't like change.

Brain damage:  The brain sends out messages to all parts of the body, telling it what to do. If the brain gets damaged, either when a child is born or in an accident, then these messages do not get through, or get through very slowly. Brian damage can affect movement, seeing, hearing, concentrating and learning or all of these.

Cerebral Palsy:  This affects a person's ability to move and how they sit or stand. Cerebral palsy is caused by damage to the baby's growing brain, either before or during birth or in early childhood. Some people with cerebral palsy can also have difficulty with seeing, hearing, talking or learning and they may also have epilepsy.

Epilepsy: This is when the brain sends mixed-up messages to the body, which means that the body does thing it was not mean to do. This is called a seizure. During a seizure, a person with epilepsy might only stop and stare for a short while or behave very strangely for seconds or minutes, or they may fall down with their body shaking a lot.

Learning disabilities/learning difficulties:  People with learning disabilities or difficulties find it hard to learn things. They can have different amounts of difficulties, called moderate, severe and profound. Moderate means a slight amount of difficulty and sever means a lot of difficulty. People who need help with almost everything, such as feeding, washing and moving are said to have profound learning difficulties.

Leukemia:  Children with leukemia do not have enough healthy blood cells. Blood cells are produced by the bone marrow (spongy stuff inside bones). These children need to have their blood controlled by medicine and sometimes they may need to have a bone marrow transplant (that means they have someone else's bond marrow put into their bones).

Organizations:

Attention Deficit Disorders: CHADD (children and adults with attention deficit disorders). www.chadd.org

Autism: Autism Society of America (ASA)

www.autism-society.org

Cerebral Palsy

United Cerebral Palsy Association, Inc

www.UCPA.ORG

Down Syndrome:

National Down Syndrome Society (NDSS)

www.ndss.org

Association for Children with Down Syndrome

info@acds.com

Epilepsy and Seizure Disorders:

Epilepsy Foundation of America

www.efa.org

Hydrocephalus Association

http://neurosurgery.mgh.harvard.edu/ha/

Mental Retardation: The Arc

http://TheArc.org/welcome.html

Tourette Syndrome Association (TSA)

email: tourette@1x.netcom.com

Sibling info:

Sibshops:  fun, lively events for siblings of kids with special needs. Kids play new games, create art, and cook. They meet other siblings and talk about the good and the not so good parts of having a sibling with special needs. contact:

Don Meyer

Sibling Support Project

Seattle WA: 206-368-4911:  dmeyer@chmc.org

Siblings of Children with Special Needs

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

Contact Lisa Athan at 973-912-0177         WWW.Griefspeaks.com       Lisa@Griefspeaks.com