top of page

Grief and Children with Special Needs

Jonathan reflecting wearing his grandpa’s red hat.

“Grief never ends … But it changes. It is a passage, not a place to stay. Grief is not a sign of weakness, nor a lack of faith … It is the price of love.” – Author Unknown

Our Family’s Loss

Grief is extremely difficult for most individuals to process, impacting our entire being…mentally, emotionally, physically, and spiritually. I lost my dad in April of 2015 and then lost my mom in April of 2018. I had just started to heal a bit from losing my dad.  Then my mom passed and ripped open a huge gaping wound of grief for them both.

The grief remains raw as my brother and I muddle through settling mom’s estate and selling their house. Just today my brother posted a picture that he had taken from the back of Mom & Dad’s house, a beautiful view overlooking the lake on which they lived. He took the photo to remember this view they so loved because the house will be

sold to the new owners next week. I wept. Just one more step of many in the passage of my grief.

Explaining Loss to Jonathan

I think most of us can empathize and understand to some, albeit small, degree what a person may be going through in dealing with his or her grief. However, imagine what it might be like for a child or adult with a cognitive disability to cope with the loss of a loved one. In general, any abstract concepts are very difficult to grasp. We are a Christian based household.  However, spirituality is not always easy to communicate effectively to our son with Down syndrome. He has learned about Jesus, God, and heaven over the years. When his beloved Grandpa and then Grandma passed, we told him that we could no longer see them or talk to them because they went to heaven to

be with Jesus and with God. We told him that someday we would all go to heaven too. He seems to accept this at face value and doesn’t question, although we are unsure how much of this abstract concept he understands.

Hiding Grief

I made two major mistakes in processing through grief with our son, Jonathan. The first mistake was initially hiding my grief and my tears from him. I thought I would be protecting him from my emotions. My thought was that it would be better to avoid upsetting him. It was wrong to do so. I am embarrassed to admit that I underestimated our son’s strength and emotional fortitude for no other reason than his cognitive disability.

I regret trying to hide my grief from him. Doing so inadvertently put the responsibility on him to approach me about his grief. Jonathan still asks about his Grandpa & Grandma in order to start a conversation about memories of them, to acknowledge how much we miss seeing them and talking to them, and to discuss how sad we are that we can’t be with them right now.  I discovered that it is okay when these talks bring a few tears.  We are both better for having experienced the conversations.

Underestimating Jonathan

My second mistake with Jonathan was the assumptions I made in regards to how he was coping with his grief.  Once again, I underestimated him. Jonathan has a very difficult time communicating not only because of having Down syndrome but also because he has verbal apraxia. This makes it extremely hard for him to express himself. It can also make it challenging for me to not only decipher the words he is saying but also to “read between the lines”.   I also have to discover the underlying meaning of what he is saying.

That being said, I had been thinking the reason Jonathan kept bringing up Grandpa & Grandma was because he didn’t understand that they had passed away and gone to heaven. It took me a bit to figure out that he really did understand that they had passed.  He just needed to be able to talk about them. He wanted the opportunity to process his grief and vocalize his memories and his loss. Ultimately, he understood what was going on, but I didn’t understand his needs.

Moving Forward

I really have no recommendations for other folks trying to help someone with a cognitive disability who is coping with a loss of a loved one. My feelings are each person processes things so differently.  It would be presumptuous of me to suggest a certain way of handling it.  However, if you can learn from any of the mistakes that I have made along the way, then maybe the paths of others will be a little better.

Currently, we are still handling our grief with the passage of time. Jonathan wears Grandpa’s old Indiana University sweatshirt.  He would live in 24×7 if we would let him.  Jonathan also wears Grandpa’s old bucket hat and reminisces. We brought home 3 little lanterns from Grandma’s house.  Jonathan loved them so he still plays with them daily and remembers her.  I have learned that our son is much stronger than I’ll ever hope to be.  Additionally, I have learned to weep openly without fear. These are the gifts I carried home from my parents’ home with my grief.

Come Roll With Me would like to thank Pam Gross for sharing her story.  Losing a loved on is so difficult and I appreciate the strength it took for her to write this article.  Pam, you are amazing!  Until next time, Keep Rollin’ and Keep Smilin’


bottom of page