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Grief and Children with Special Needs:
Children with special needs may express their grief and feelings differently, but their grief is still just as powerful.
Keep these strategies in mind when working with these students:
· Be open and honest. Use appropriate words such as “dead” and “death” and avoid euphemisms. Don’t lie to the child or tell half truths.
· Beware of telling a child that the person is “just sleeping”.
· Be available to listen, to talk or simply spend time with the child.
· Be patient as the same questions may be asked over and over again.
· Allow the child to show their grief in whatever way they want, as long as it is safe. Some want to just ignore it and have fun. That is okay too.
· Enable the child to say goodbye and see the body of the person who died if at all possible, and encourage parents to allow that. Research shows that when children see the body, they show less behavioral acting out in the future.
· Don’t exclude the child from helpful rituals of death, which will help them understand someone important in their life has died. Children with developmental disabilities need more concrete rituals and explicit directions, and simplified activities.
· Rituals that are abstract may be confusing, frustrating and of little value.
· Please don’t try to protect the children from grief, but rather try to support and reassure them, acknowledge their losses and help them to find healthy ways to express their feelings.
· Often those who lack the grief vocabulary to talk about feelings, tend to express their feelings through their behavior.
· Avoid too much change at this confusing and distressing time, if possible.
· Always give LD children space and time to express feelings.
Some helpful ways to help bereaved children with learning disabilities:
1. Look together at photographs of the person who has died and share memories.
2. Sending greeting cards to the family, sibling, child
3. Encourage the grieving child to wear an article of clothing that may be a linking or comfort object to the person who died or is gone.
4. Having a pillow or blanket made from person’s clothes helps too.
5. Listen to the person’s favorite music
6. Make a book about the person who died
7. Light a candle on special days and share memories
8. Make a memory box. Child chooses what memories go inside.
9. Read books, Badgers Parting Gifts: sadness and joy in memories
10. Prepare them for the funeral, how to behave, what they will experience.
Grief issues specific to people with autism:
· Each person with autism will react individually to bereavement and the approach to support needs to be a unique as the individual.
· People with autism may share the common responses to death and bereavement such as denial, anger and despair.
· The grieving process of people with autism may be profoundly affected by their disabilities.
· Skilled support is an important factor in helping individuals move through their grief.
It is difficult to generalize how each child will experience loss through death, but such a loss can give rise to phobias, fears, obsession, lack of understanding, and resistance to change, which can be considered by others to be inappropriate reactions or even callous indifference. Children on the Spectrum depend on the security of familiarity. Often these children may have difficulty to find words to express their feelings, which is why goodbye rituals are so important.
It is important to balance how much information is given. Too much or too little information may make it difficult to voice concerns or ask the right questions. There is the chance that the person will develop clinical anxiety and/or depression.
When to refer to a professional:
· They deny that anyone has died, or act as if nothing happened
· They threaten or talk of suicide (particularly difficult as many with autism also suffer with depression and may generally have thoughts to suicide)
· They become unusually and persistently aggressive or engage in anti-social behavior.
· They become withdrawn and socially isolated.
Remember that those with a very limited number of close relationships experience the death of a friend or family member sometimes as a catastrophic loss and the idea of re-investing in other people is very difficult. Many of these children become highly attached and dependent to their teachers or school staff so when a staff member leaves the job or has died, it may be very difficult for the child.
Staff needs to empathize and not try to make the person “get over it”. Encourage the students’ family to allow them to ‘see the dead body’ to help them understand that the death is irreversible and that he/she is not coming back. Staff can anticipate reactions, listen and read cues, intervene, ask how the person feels, talk about the deceased and explain the normal grieving process. Encourage the child to keep a feelings diary to help deal with all of the feelings. Commemorating anniversary days by developing ritual can help provide the children a time to remember and help cut down on obsessive behaviors.
Continue routines, keep decision making to a minimum and encourage connections. Returning to school or work after a loss can be very stressful. Some worry about their surviving parent at home alone.
Sometimes anger is directed at the person who shared the news of the death or it may be generalized. Anger may also be apparent when activities provided by the deceased are no longer available. Enable students to express this anger without hurting themselves, others or property, for example using exercise or a punching bag.
Remember that some won’t react at first or reacts in a way that is different that you would expect.
Discuss with children that it is common to feel it was “their fault” someone died, get headaches, feel numb, ask many questions, worry etc. Remind them that they need social support and help, someone to talk to and a place to remember.
“We should never underestimate, and we cannot overestimate, the simple power of acceptance, affirmation and validation. It is the key to supporting grief.” Guidebook on Helping Persons with Mental Retardation Mourn by Jeffrey Kauffman (2005)
Do’s and Don’ts for School Staff:
· Offer time (brief but regular meetings can mean a lot)
· Be available to listen
· Talk about the good and bad memories
· Accept a student’s feelings
· Say “I don’t know” in relation to questions you really don’t have the answer for.
· Allow students to cry
· Watch for behavior changes
· Be aware of previous bereavement and/or depression
· Be sensitive to beliefs and cultural backgrounds
· Use rituals
· Assume that the person with autism can cope without support
· Thing they do not ‘feel’ the loss
· Deny their thoughts or views on the death
· Use cliche's such as ‘You need to be strong’ or ‘You are coping well’
· Make new or sudden changes to the routine
· Think that you cannot support them
Helpful Rituals for Developmentally Disabled Grievers
· The use of photographs in ritual.
Have students sit in a circle and pass around a photo of the person who died and share memories. If the child is non verbal the facilitator can share the memories “for the child” about the loss.
· Using storytelling in ritual.
Write a story about the person who has died in collaboration with the individual with the disability.
· Use of memory objects in ritual.
Put a group of objects together that remind them of the person who died, such as photos, books, clothing articles, papers etc. For someone less verbal, let child choose what goes in pile. Leave the objects for several days. Limited time for those easily distracted.
· Use of Drawing in Ritual.
Have the child draw a picture of the person who died or memories of the person and share it with others. Even if the child has limited fine motor skills, encourage the child to draw what he/she remembers.
· Use of Music in Ritual.
Listen to music that the person who died liked or that reminds her of the person who died. The song may relate to the person’s job or personality trait. Can listen, or move to music or draw.
· Use of Writing in Ritual.
· The child can write or dictate a letter to or about the person.
Perhaps provide child with a letter with sentence starters.
· Use of Stones in Ritual.
Share a memory of the person and then place a small stone in a decorative fountain or paint the rock or write a word on it. Take time daily to remember the person.
· Use of Daily Memory in Ritual.
Choose an activity that the person used to do with or to the child. This may be self-care or taking a walk, cooking or playing a game together. As the teacher does this activity intentionally talk about the person who has died. This can occur immediately after the death or delayed for weeks. Pay attention to student’s cues in order to help the child in the healing process.
(Adapted from : Helping People with Developmental Disabilities Mourn: Practical Rituals for Caregivers by Marc A. Markell, PhD, 2005)
Graduate School Success for Students with Disabilities: Scholarships, support resources and expert insight for achieving an advanced degree. Visit: www.GoGrad.org
Support Groups in New Jersey
ASPEN (Asperger Syndrome Education Network): Information and support for parents of children with Asperger syndrome, pervasive developmental disorders and high functioning autism. Discussion groups, guest speakers and statewide workshops. Dues: $35/yr (parents), $55/professional. Write ASPEN 9 Aspen Circle, Edison, NJ 08820 Call Lori Shery 732-321-0880 (9-2) Web site: www.aspennj.org
Autism New Jersey (formerly COSAC): Bilingual, Professionally run. Helps families, individuals, teachers and agencies concerned about the welfare and treatment of children and adults with autism. Pen pals for siblings, guest speakers, information, referral, advocacy, assistance and workshops. Support groups statewide. Newsletter. Write Autism New Jersey, 1450 Parkside Ave, Suite 22, Ewing, NJ 08638. Call 1-800-428-8476 (day) or 609-883-8100 ext 28. Web site: www.njcosac.org email: firstname.lastname@example.org
ASPEN: (Asperger Syndrome Parents Education Network) Provides resource information, education, caring, sharing and understanding to parents of children with Asperger syndrome. Phone help, literature, and newsletter. Glen Rock, Call 1-201-391-0758. web site: www.aspennj.org email: email@example.com
Autism New Jersey (formerly COSAC) Professionally run, mutual support for parents of children with autism. Families welcome. Guest speakers, literature and phone help. Web site: http://www.njcosac.org
Paramus: Meets 3rd Friday 7-9 Bergen Community College, 400 Paramus Road, Call Kathy 963-655-8066 (M-F, 6:30pm-10pm Saturday and Sunday, daytime)
Ridgewood: Meets 1st Friday , 7-9pm, Mt Carmel Church, Passaic St. Call Gary 1-201-503-9476
See next web page: Special Needs & Children 2 for more information
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