How to Grieve the Death of a Child With a Developmental Disability


The death of your child with a disability is a profoundly painful experience that'll take time for you to heal. The grieving process is only the beginning of a lifetime of missing them and wishing that they were still there with you.

Nothing in life prepares you for the death of a child. Even when you expect their death, it's hard to believe and to accept when it happens. 

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The normal grief responses that you'll likely experience range from shock and numbness to denial and other feelings of intense emotion. While there isn't any particular way to grieve that fits every situation, some of the more commonly shared responses come in stages of grief.

They are denial, anger, bargaining, depression, and ultimately acceptance. The grief that follows the death of your child is unique only to you. Grieving becomes a personal journey through the pain and sorrow following your child's death. 

Steps for Grieving the Death of a Child With a Developmental Disability

A child's death is as devastating no matter their age and health condition. This type of loss is no less than a child dying in a car accident, murder, suicide, or any other way.

Many misconceptions dealing with the death of a child with a developmental disability are that this type of loss is less of a traumatic event for the parents than any other child’s death.

Some people think that a parent of a child with an intellectual or physical disability is somehow prepared for their death because they may have known that the child may not live as long as an overall healthier child. 

1. Take some time to breathe

Experiencing the pain and sorrow of having a child die is incomparable to any other type of loss. You may feel as if your entire world has come crashing down on you. Finding the will to go on living can seem impossible. 

When you feel as if you can no longer take the heartache and that you can't take any more pain and suffering, take a break from your grief to breathe.

Go outside for a short, brisk walk. Breathe in the fresh air, practice walking meditation, and anything else that will help you cope with your loss. If it helps you, read some books about losing a child, and talk with others you know who've also experienced a child's death. 

2. Overcome guilt and remorse

Feelings of failure and guilt about your child's medical condition and, ultimately, their death may plague you from when they were diagnosed with a chronic disability.

These feelings are often expected and are a normal part of the grieving process for parents of children with activity limitations or participation restrictions in any scenario. 

Learning to forgive yourself for the things that are beyond your control will take some getting used to. Communicate with your partner and other members of your household about how you're feeling and talk about it openly.

Communication between grieving parents is essential in the weeks and months following their child's death to help cope with some of these feelings of guilt, shame, and remorse.

3. Accept assistance at home

In the days following the death of your child, it may seem as if everything is running at warp speed. Days will turn into weeks, and before you know it, you’ll barely be able to remember what day it is.

As you grieve the loss of your child, your friends and loved ones will step forward with words of comfort and condolences. Some will offer to help you with whatever’s needed. 

Don’t be ashamed or afraid to accept help from those contributing to lend you their support. You’ll need help with the basics at a minimum. Ask others to help you with meal preparation, household chores, and taking care of your other children and pets, if any. 

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4. Seek help when needed

Professional help is out there to help you through the most challenging of days. Grief counselors and therapists often provide free service online to those who need information to help them get through the early days following a child's death.

There are also many online support groups for bereaved parents specifically aimed at parents of children with activity limitations or participation restrictions.

When you're feeling up to it, take some time to browse online to see what groups may be available to help support you as you navigate through your grief. 

5. Learn to forgive others

As you struggle with coping with the death of an adult child, or a child of any age, you'll soon come up against people who say some insensitive and hurtful things.

Hearing well-meaning but offensive cliches of the child being in a better place or of God's needing another angel in heaven are hurtful to every parent dealing with the sudden death of a child.

The parent of a child with a developmental disability may already be aware that their child's death means the end of their suffering, but the pain of their loss is immense nonetheless.

They'll likely never get over the profound pain of losing their child regardless of the understanding that their child is no longer suffering.

Ways You Can Remember and Memorialize Your Child

Finding ways of remembering a child who’s died is both a painful and beautiful process as you work through your grief. There are many special and unique ways for you to memorialize your child’s life that range from sharing your resources to helping others in need. The following ideas may help you find new meaning and hope after the loss of your child.

1. Visit your child’s grave

Graveside visits can be either extraordinarily healing or extremely traumatic. Some parents of children who’ve died can’t bring themselves to visit their child’s graveside.

They fear revisiting their child’s death and withdraw from participating in death rituals of grief and mourning. The experience may still be too raw and emotional.

For others, visiting their child where they’ve been laid to rest brings about a sense of peace and comfort. There’s no right or wrong way to grieve. Be patient with yourself and allow for your grief to take shape. You’ll know when, if ever, you’re ready to spend time at your child’s graveside. 

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2. Help other parents who are struggling

There are many programs out there to help people who are struggling with raising a child with a developmental disability, ranging from financial help to receiving free or low-cost medical care.

While these programs are excellent and much-needed, sometimes a parent of a child with a developmental disability needs a reprieve from the constant care-giving.

Make yourself available to others who may be struggling with providing the round-the-clock care that’s sometimes required in raising a child with an activity limitation or participation restriction. Your experience and expertise will come in handy.

Not everyone knows how to manage the care and needs of a child living with developmental disabilities. Reach out to others by joining an online support group in your area or spreading the word through other local and community organizations. 

3. Donate your resources

Letting go of your child's things may be difficult to part with at the end of the day. Every day without your child may seem impossible, especially when you sleep every night and wake up every day with the same heartbreak.

A way to preserve your child's memory is to give back in their name by helping others who might benefit from their no longer used equipment, toys, or other items.

You may want to hold on to as many of their personal belongings as possible to bring you comfort as you heal from the pain of no longer having them in your life.

However, certain items will better serve others in need, such as medical beds, wheelchairs, or other everyday equipment needed to make life easier for someone with activity limitations or participation restrictions. 

4. Talk to others about your child

When a child dies, it may seem like a part of you has also died with them. It's not usual to feel empty and hollow following the death of your child.

Life suddenly changes meaning for you, and it's no longer what it used to be. Redefining your future may seem like an impossibility as things that were once important to you have lost their meaning.

It's helpful to talk with others about your child who's died to keep their memory alive and give sense to their life. The more you talk to others about your child, the more you feel that you're doing your part in honoring their life in a meaningful way. 

5. Plant a memorial garden

Planting a memorial garden is a gesture of love and commitment to keeping your child's memory alive. These gardens require a labor of love from planning, designing, planting, and watering the flowers and greenery you choose for it.

Creating this sacred space can be therapeutic and gives you a place to spend contemplative time as you grieve the death of your child.

As time goes on, you can spend time cultivating and nurturing your garden as you move through the grieving process. It'll give you something to do that's directly related to your child. 

Coping With the Death of a Child With a Developmental Disability

The death of a child with a developmental disability can be excruciating but also a tiny bit bittersweet. The challenges they face during their lifetime are painful enough to watch from a parent's perspective, but the end of any life also brings a unique type of pain.

Dealing with a child's loss will never be easy, as it never becomes easy telling a child about a sibling's death or learning to live without them. Through it all, it'll take hope and faith that there'll be an end to your profound suffering over time. 

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