“I’ll love you forever
I’ll like you for always
As long as I’m living
my baby you’ll be.”

This refrains follows the growth of a child in Robert Munsch’s book Love you Forever.

We watch the son grow from a baby to an adult while at each stage of development his mom confirms her forever kind of love. At the end of the book, the adult son comes and gives the same message to his dying mom and then carries on the tradition with his own child.

And that’s the way it is supposed to be.  Of course we will love our children forever.

But forever takes on a whole new meaning when you have a child with special needs.

It is every parent’s expectation that your children will one day grow up and leave home and your role as a parent will not end but it will change.  But for some of us, we know fairly early in the game that is not likely to happen.

“Special needs” is a huge basket category covering a wide range of issues and difficulties and I’m not going to go into that here.  Some special needs kids will be able to make their own way in the world, working, living on their own, marrying and raising their own families.   But some will not; and of those some families choose to keep them at home rather than send them to group homes or other facilities.

No judgments here.  Nothing is right or wrong.  Each family makes the best decisions they can for their family.  I’m only writing about my own experience.  Our son is able to make his own way in the world on some things but not on everything.  Independent living for him would not be living; it would just be existing.  We have chosen to have him continue to live with us.

So for some of us, as our friends are downsizing and planning for retirement trips, life goes on very much as it has for years.  Smaller car, nope.  We can’t do that as we have a full sized adult who still rides in the backseat.  Smaller house with less to clean and maintain?  Not really.  Fortunately he is able to help with some of that maintenance with supervision.

But what will happen when we aren’t here for him?  How can we plan for that?  The laws have changed and you can no longer establish a special needs trust, or so our attorney told us.  If he ever needs government assistance, he can’t inherit any assets from us or lose his assistance.  How can we prepare to care for him, to “love him forever?”  I wish I had some answers.

Forever is a very long time.