Special Needs Grief – A Primer

special needs grieving

We received a genetic disorder diagnosis in October of 2018 for our youngest daughter which includes muscle weakness and some level of intellectual disability. Since she is only 18 months, it will be quite a while before we know exactly what her level of disability will be and how it will affect her life long-term. While we can't know the details yet, we do know this is a lifelong disorder and there is currently no cure, nor is there likely to be for M.

When we received our diagnosis, and now in the months following, I realized pretty quickly that I was grieving. I have grieved a lot of death in the past 20 years, so I know how to spot it. I'll confess that it caught me off guard that a special needs diagnosis would be something I needed to grieve, especially since I had zero first-hand experience with special needs.

At first glance, using the word 'grief' to describe processing a special needs diagnosis may seem extreme. Many in our culture equate grief with someone having physically died, of course, and our specific disorder is not life-threatening. I've learned over time to see grief as the proper response to a loss, however, and loss can take on many forms. Of course loss of life is the example anyone can understand, but there are losses of other kinds that have to be grieved, too.

When we received our diagnosis, I was devastated. It felt like something had died. It took me a bit of time to be able to put words around why it felt that weighty. I'm grieving the life that I want M to be able to live, and the options that won't be available to her because of her disability. I'm grieving the ways this shift will affect her siblings, who will likely need to care for her when they all outlive my husband & me. I'm grieving the toll this disorder will take on our marriage, and how hard we will have to fight to pull together instead of pulling apart. I'm grieving the options that won't be available to us as individuals, as a couple, and as a family unit because of the ways we will all have to shift to accommodate M's needs. I'm grieving the simple fact that this was not what we expected, not what we signed up for, and not what we would choose for M, her siblings, or ourselves.

As I've tried to explain to friends why this has been difficult to process, I've come up with a few helpful comparisons. A special needs diagnosis is like a death: the life I thought I was going to live has died, and there's nothing I can do to get it back. It's also like a birth: an entire new defining identity has entered our world and will be with us for a lifetime. This diagnosis has a lot of gravity. It has become the sun we will all position ourselves around. There's inertia in that shift - I had a lovely glimpse of the paths I fully expected us to follow, and I have been forced to bid them a permanent farewell. Moving onto the new path is like rapidly changing course in a moving vehicle: adjusting to the new direction is not instantaneous, and sometimes it's downright painful.

If you have a friend or family member who is processing a life-altering diagnosis, remember that this is something to be grieved. In the stages of grief, a person will ultimately move to places of acceptance, but that may be years away. In the meantime, support them in their grief, just as you would someone who had experienced a physical death.

If you are processing a life-altering diagnosis, give yourself the space and tools to grieve. Learn about the stages of grief, and give yourself time to work through them. Know that you are not alone in this process, even if you don't know someone who has personally gone through it. There are thousands of people out there who have grieved a diagnosis, and we can all attest that it is incredibly difficult and painful and messy. Your feelings of sadness, devastation, and loss are very real and very valid.

Photo by Jacob Postuma on Unsplash