A New Normal – Explaining Loss to Child with Special Needs

Posted
8/1/2016
Mary Ribeiro
Special Education Teacher

Last week I enjoyed the best kind (in my mind) of vacation: a beach vacation. The opportunity to sit and watch the waves crash to shore in a pulsing, cacophonous, capacious rhythm which makes my heart happy, my mind relax, and my body become serenely placid. Ahh…the joys of getting away from it all. After a very long 2 years, this vacation was, as they say, just what the doctor ordered.

En route home, my phone rang. On the other end of the line was a dear friend of my family's. She was desperately sad and obviously upset. Her dad had unexpectedly died. As she was sharing about their tragedy, in my mind I was creating a checklist of what needed to be done when I got home so I could get back in the car, head to my hometown, and be with the ones I love to join in mourning the passing of this dear man.

Once again in the car and heading north, the same friend called. She has a family member whose young one is nonverbal and Autistic, and who considers the one who'd passed to be his best friend. The relationship this seven year old shared with the one we all loved was extra special; how would explaining the passing of this good man be received by this special little boy? Not just special in the sense of his special needs, but special in the sense that he, probably more than us all, loved this man in way that we could only try to comprehend.

What the heck do you say?

How do you tell children their favorite person has died and won't be there to join them in watching baseball on television? He will no longer be there with you daily to share time together playing with a favorite toy? That he won't be there to laugh with you as you learn to work new apps on your iPad and show the old dog a new trick or two? Who will replace this man's hearty laugh and happy demeanor which fills your time together with complete joy? Who understands that your needs are unique yet loves you no matter how you allow him to do so because he is so committed to you? Who will share the unique ability to interact with you in the way that feels simultaneously safe and loving? Will you understand the depth of your own loss? If so, how much will you understand? What will you need from the remaining loved ones? Will you process this more quickly than others in your family, or more slowly?

When I arrived at the home of my friend, we embraced for a long time, immediately crying together, and our quiet not needing explanation. We shared silent moments packed full of an understanding that only best friends can understand. As I unpacked my bags to prepare for the week's events, we also unpacked a few of our thoughts and emotions as we discussed how the family would support this special boy. There is no one best way; there just isn't. This isn't like changing a lightbulb where you take out the bad bulb and simply replace it.

Because this family is chock full of intelligent members, and they first reached out to another dear friend who holds a Master's in Special Education with a concentration in Autism. Who better to proffer some great information? Next, they connected with the boy's teachers. Then, they scoured the Internet. All of these resources were tempered by the parents' knowledge of their child and what they believed to be best for him.

There is NO one best way to handle the conversation about the death of a loved one with children, especially with special needs kiddos, but there are a few universal Do's and Don'ts. For our purposes during this week, we started with the Don'ts list in order to best formulate the Do's.

Don't

  • Don't tell the child the person has "gone to sleep". Because children tend to be concrete and literal in processing information, if they know a loved one has "gone to sleep" but never woke up again, they will be fearful of going to sleep. Heck, they themselves will probably be afraid to fall asleep in fear of not waking up.
  • Don't avoid conversation on the topic of dying. Dying is a reality of living. There are many wonderful books written to support parents' efforts in creating an understanding. A few to preview as suggested by GoodReads.com:
    • Charlotte's Web by E.B. White
    • Bridge to Terabithia by Katherine Paterson
    • When Grandma Climbed the Magic Ladder by Priya Narayanan
    • I'll Always Love You by Hans Wilhelm

Consider reading these in a read-aloud format so conversation can occur freely.

  • Don't negate your child's emotions. Grief is sneaky and makes its presence known when least expected. A child may pick up a toy given to them by their loved one and it triggers a wide array of thoughts. Processing these emotions is tough for adults, challenging for neuro-normal kids and even more so for neuro-atypical kiddos.

Do

  • Be patient with your child as they, like you, try to establish a new normal without the physical presence of the loved one.
  • Do allow them to feel their pain. Everyone grieves for differing lengths of time. Spontaneously moments of crying WILL happen. Love them through it.
  • Do share happy memories of the one who has passed. Conversations about great adventures together, special times, characteristics, etc. all serve to keep the memories happy.
  • According to Hospicenet.org, kids need short, concise conversations about the topic, not long, drawn-out lectures.
  • Do engage in remembrances like planting a tree to honor the deceased, placing a bench in the park, or visiting a shared special place and have conversations about fun times at that place.
  • Do consider making a quilt using a well-loved article of the deceased's clothing and a scanned-to-fabric photo as the central element. The child can then grab this quilt and perhaps find some solace and comfort.

Are there more Do's and Don'ts? Yes. Is this list exhaustive? No, but maybe these can help.

Fortunately for this little guy, there is a lot of love and our littlest member has a lot of support from everyone around him. On a particular day, his mother noticed him sitting on the window seat, staring out the window and waiting for his special pal to pull up in the driveway. The young one was unusually quiet, not engaging in his typical merry sing-song rhythmic pattern of vocalization. His mother knew this little fellow was aware that his best friend would not be pulling up into their driveway, would not be entering the living room to gregariously greet this sweet boy; instead, the boy and his dog silently watched and thought in a quiet and knowing way. All the mother could was allow her precious boy and his dog to have their special time together, silently grieving, thinking, coming to terms with it all, and beginning to process what will be his new normal.

Life has its twists and turns, doesn't it? Little did I know as I was driving home from a peace-filled vacation that I wouldn't get to see my friend again in this lifetime, but one thing I do know, We'll never forget our loved one-this man's legacy is varied and quite special. I will always hold tight to my friends and family as we move forward through life together, and hopefully my very small, very quiet role and interactions with this little guy helped us both to cope with our loss just a little bit more.

Mary Ribeiro

Mary Ribeiro

Mary has always loved learning, but was a struggling learner who couldn’t read until one day, the right teacher came along with the right methodology, and everything clicked for Mary. Understanding the struggles of children who just “don’t get it,” Mary has spent her career supporting children with learning difficulties and finding ways to excite them about education. Over her career, Mary has taught Second Grade, Third Grade, and served as a Middle School Administrator in Michigan, most often in the urban setting. In 2015, Mary relocated to Arkansas in search of new opportunities and is excited at all that has been placed before her. She currently teaches Special Education in a self-contained setting for children in grades 2-4.
Mary Ribeiro

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