The Perpetual Grief Series

I’m not sharing about the concept of continual and on going grief to gain sympathy or pity. But to bring awareness to a state of being that some may have no concept about. My life is not continually sadness and depression. There are SO MANY AMAZING things…..starting with the 6 most amazing people that I love more than life itself.


But, I am living this life that has been hard and there are aspects of grieving that I never seem to get beyond because certain situations are brought up again and again and again.

Parenting a child (or children) with special needs is an interesting endeavor. There is a certain loss of dreams and ideals that you come up against time and time again.

For many reasons, my 2 older boys – both of which have Autism, ADHD, Learning Disabilites and Anxiety, as well as Sensory Processing Disorder – have never done very well in group activities. Whether its the social aspect, or the inability to focus, the lack of verbal or written output, generalized fear and anxiety; or even the chaos, and sensory input from an organized activity.

We tried to put Jeremy in Karate, and Soccer when he was younger. The karate instructor was positive that he could whip Jeremy into shape…..and eventually asked us to leave when all Jeremy was interested in doing was spinning in circles while laying on the floor. The soccer league was specifically a no rules, just play league and we figured the lack of standing in lines waiting for your turn to do the drills would be amazing for him. We were excited to have him ask to be in net every week, until we realized that the ball almost never made it to the net and that he spent the majority of his time laying in the grass, looking up at the sky and rolling around. We attempted to put Josiah in a parkour class but after getting spoken to by the instructors because he wouldn’t stay in the lines and wait his turn, we removed him from that activity as well.

The only activity that has been somewhat tolerated has been swimming…..and I’m not surprised because my boys spend about 50% of their awake time in the the bath……It’s a sensory heaven…..the perfect temperature, perfect amount of pressure, they can float if they want, still play with lego, and can hide under the water and its so quiet.

Even so, we got notified by the swimming instructor, last week, that maybe Siah would benefit from private lessons as he struggles with listening to the teacher and following the rules. And I grieve….

I see parents all around me putting their kids in different activities and I grieve the loss of normality. I see parents sharing excitedly of how their child is excelling in this activity or that activity. Hear parents talk about how their child got a scholarship to this college or university and while I’m so happy for them and would never begrudge their child’s success…..

I grieve. I grieve because I celebrate differently.

I celebrate days when we have “only 3” meltdowns. I celebrate just getting my children to school……without tears is a banner day. I still haven’t been able to celebrate just dropping off my kindergarten-er and having him run inside happily. I celebrate days where the teacher hasn’t had to talk to me about an issue. I celebrate days where bedtime doesn’t take 3 hours from start to finish. I celebrate my children eating……something……anything……I celebrate when my child uses the bathroom without fear, tears and pain. I celebrate when we can find the “softy pants”.

But I grieve the loss of dreams…..the dream of normalcy…the thoughts and ideals I had of life looking a certain way. Of being able to put my son in soccer. Of having my kids involved in sports or an activity…..of having them excel at something.

And they do excel……just differently.

In the grand scheme of things, I’m raising my children to be kind, compassionate, understanding, aware…… and I think I’m succeeding. But that doesn’t mean that somewhere underneath it all, that a part of me doesn’t feel the loss…..

And I grieve……

Author: Patricia Culley

I'm the ringmaster of my own circus. Just trying to stay one step ahead of the monkeys.

2 thoughts on “The Perpetual Grief Series”

  1. I can totally relate. The 3 hour bedtime especially – I have 3 kids under 4 and two have ASD. The kids are rarely asleep before 10 pm. Then I am too tired to clean. I barely get the dishwasher loaded. And I need a little down time where I can actually sit down and maybe watch a TV show. It is hard to explain how I can be so tired, get so little sleep, house is messy and I don’t get to bed before midnight (I shower at night because there is no way I can leave the 3 kids unattended for 5 minutes).

Leave a Reply

Your email address will not be published. Required fields are marked *