You Have a Family Member with Down Syndrome, So Now What? Part 8

Alice’s grandfather passed away a little more than a week ago.  I was really troubled about how Alice would handle it.  There was a memorial service with an open casket viewing.  Again, troubling.  Alice, like many of our children with and without Down syndrome are have a lot of impulses and not a commensurate amount of control.

Given that changing the service was a non-starter, what do you do?  Your experiences and your family traditions should be your ultimate guide, but here is what I did.

  1. I talked to Alice at great length about it.  I tried to talk to her a little bit each day.  It was hard to broach this subject as it wasn’t clear how much she understood and to what depth.  At one point, she chose to get into a bickering match with me that he wasn’t dead.  I tried my hardest to gently end run it.  I don’t know how well I did with the gentle part.  Rather than bicker, which is pointless, I tried to offer her other language.  “I miss baba too.”  I tried talking about death as a gift of days that we get when we’re born.  It is a happy gift because every new day is wonderful, but it’s a sad gift because the days do run out and we don’t know how many are in the box until they’re all gone.
  2. I read her “The Tenth Good Thing About Barney“.  I don’t know if it stuck.  Maybe it did.
  3. I set her expectations for the funeral: there would be family (listed them), they would be sad and crying, there would be a lot of strangers who knew baba.
  4. I gave her some scripted things to say, “I’m sorry” and “I love you”.  These I know worked because I heard her put her own twist on it saying, “I’m sorry you’re sad”.
  5. I let her have time at the kneeler.  This was hard as she kept wanting to touch her baba and wake him up.  She needed redirection to keep from being inappropriate.  I tried to get her to say prayers instead.  Alice prays very quietly even when she’s supposed to speak up.  The only phrase I caught was “…baba is alive, and thank mommy for the gift.”  I’m hoping that she was talking about the gift of days.
  6. I made her the unofficial hug ambassador and sent her to hug the grieving.  She loves human contact and this was perfect for her.  She was also happy to shake hands with people in the receiving line.

I don’t know how well this worked yet.


No Strength Today

I’m very lucky.  I tend to be confident and decisive.  It’s a blessing to intuitively know that a decision is right or at least best under the circumstances.  I also know when I’m in over my head.  Like now – wishing that I had infinite patience, understanding that never runs dry, and limitless wisdom.  Heck, even a 4x buffer might be enough.  I know it is human; I know it is normal; that is little consolation.