Grief

When we hear the word “grief”, we most often associate it with the loss of something – or someone – that will not return. It is almost always associated with permanence.

By the time we are adults, many have lost a grandparent. I experienced the loss of my first Grandfather in second grade. I then experienced the loss of my second Grandfather just a few months ago. Two completely different times of my life, yet the grief is still the same.

Many people have lost beloved pets. This, too, is a grief I have endured as a child, as an adult, and also as a parent. That was the toughest one.

While we live this grief, and sometimes it fades; it never really goes away.

Grief sometimes looks different as a special needs parent.

We grieve the moments.

While we mostly focus on the accomplishments and successes, we live in a vicious cycle of grief and triumph.

To say we grieve something like the loss of sleep – sounds silly… right?

We grieve loss of sleep because of the repercussions it causes the next day. We celebrate sleeping through the night at the age of seven, like it is a big accomplishment.

Because it is.

In our world, with Autism, those repercussions are amplified and not anything that can be consciously controlled.

We celebrate the gains and successes made in therapies of various tasks that took days, weeks or even months to learn. Only to grieve the loss of therapy time in the next session which ended abruptly because our kiddo is too overwhelmed to continue any longer – likely from getting only a mere 3 hours of sleep the night before.

We grieve the loss of therapy time because we know just how much of a privilege it is to have. We understand just how crucial therapies are to get to those gains, and success our children work so hard to achieve. Things like insurance, therapists leaving, or a pandemic can take it all away from you in the blink of an eye.

These losses may seem minimal, but in the moment, they feel like gigantic steps backward.

We grieve the lack of understanding, because the fact that there is a communication barrier smacks you in your face as you are trying to calm your child from whatever has its grip on them and won’t let go. A simple response of “no, we can’t do that today” is anything but simple. Explaining logic is not an option.

We grieve the time lost in a day where our child is so consumed by meltdowns, the type of meltdowns so intense that aggression ensues. What I wouldn’t give to take away that struggle… and replace it with non-stop belly laughs and snuggles.

Yet, while in a full-blown meltdown, your child fights through the tears – to express for the first time –

“I sad.”

We grieve what the meltdown does to our child, yet we vehemently celebrate such a seemingly simple statement; because these two simple little words took seven years to identify and vocalize in the correct context.

While we as special needs parents know a different grief, we also know a different sense of triumph.

We hang our hearts on those precious moments, and live for the next one.