Author: Jenny Wise

Losing a loved one brings on complex emotions, and helping your special needs child understand and cope with grief can be overwhelming.  Fortunately there is help.

Dying and death.  It’s normal to feel helpless when someone is dying, but you can assist your special needs child through the process.

  • Allow your child to take part in caring for the loved one.  Assisting with something as small as selecting a magazine or lotion allows your child to feel connected.  The experts at ModernLoss explain, “We often over-focus on what we can do for people with disabilities. They have a lot to offer and it’s important to give them opportunities to support us.”
  • Help your child understand what will happen at the memorial services.  Explain the process and what roles people play, as well as how people may act.
  • Make communication about the death direct and clear.  Find opportunities to explain about death as a part of normal life.
    • Some experts suggest using an example such as a housefly.  By pointing out a dead housefly and explaining that the insect can no longer move it’s legs or fly gives your child a firm example of death.  You can make a parallel with a human who is dying, explaining that health deteriorates and in death the person will no longer breathe or walk.
    • Word choice. When you describe death don’t use vague expressions such as “passing,” “rest” or “sleep”.  These words can be too difficult conceptually for your special needs child.
  • Let your child know that everyone experiences grief differently and it’s okay to be sad.  He or she should know that if others are crying, it’s okay not to cry.  If your child does have tears that’s okay, too.
  • Listen to your child’s concerns.  Many special needs children cannot express feelings well, so watch for indirect communication about the loved one.  Worry may be expressed by talking about something that your child did with the person, such as putting together a puzzle, singing a particular song, or a favorite meal.  Take the opportunity to comfort during these times.
  • Some experts advise allowing your child to express grief as it arises.  You may feel like talking about the death, but bringing it up can create anxiety in your child.  When your child does grieve, allow it.  Don’t try to minimize or distract him or her from the emotions.
  • Create a memorial for your child to observe after the loved one is departed.  Something like a playlist of songs, a scrapbook, or slideshow can be a meaningful touchstone for your child.

Grief counseling.  Sometimes it is helpful to have a professional involved.  There are many choices available and making the right one can feel complicated.  The professionals at Exceptional Lives offer this advice:

  • Find a grief counselor familiar with your child’s disability.
  • Ensure the counselor is familiar with both intellectual disability and mental health.
  • The counselor should help with coping skills.
  • The counselor should help throughout the grieving process.

Your child’s future.  Grieving can bring on a storm of emotions.  As the parent of a special needs child you can feel particularly helpless during these times.  Reviewing your long-term accommodations can help maintain a sense of order.  It’s reassuring to know your child will be well-cared for even into adulthood.  Some of your options are:

  • Family members. Many special needs children are cared for by family members throughout their lives.
  • Personal care professionals. These caregivers can be found through agencies or individually.  They provide such services as bathing, housekeeping, and some medical assistance.  This option is especially helpful for independent living arrangements.
  • Group homes. A community-style living arrangement may be your best choice.
  • Residential facilities are still a viable option.

Loving and loss.  By using these guidelines you can help your special needs child through grief.  Assist your child with understanding and coping with death.  Seek help through a grief counselor if needed.  Reassure yourself by reviewing long-term accommodations you made for your child’s care.  Following this advice will help you both through the grieving process.