Thinking About Forever
A few nights ago we attempted to take Cooper trick-or-treating. We prepared. We planned. We encouraged and motivated. We set realistic expectations.
We tried. We failed. And Jamie and I found ourselves sitting on our porch thinking about forever. Thinking about the next fifty years of autism.
We aren’t new to this. We’ve been doing it for seven years. We live realistic hope better than anyone I know. And yet, we were there again. Looking at forever. Saying the worries out loud that only a parent of a severely disabled child can say to their partner.
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Hi Kate, I know you didn’t ask for advice or suggestions, but if I may just share my experience in hopes it can help you or others.
If I may just introduce the idea of sacrifice. I think in life we , today, aren’t used to having our children make sacrifices especially if they don’t fully understand the sacrifice. We as parents will sacrifice all day long for our children and loved ones and even our pets! But I personally don’t allow them to make sacrifices for me or for the betterment of the family. It wasn’t until someone introduced this concept to me when I was at an absolute rock bottom with my son, my weight, my friends, my marriage. I had to start having others make sacrifices so I could function again. What does this mean? I had to hire someone to be with my son . He had to sacrifice time with me so I could be with my other kids. So I could exercise. So I could be alone and relax heaven forbid. My other children had to make some sacrifices where they needed to spend more time with dad than with me so I could get to the mall and buy clothes without holes. Or go online and buy something current so I didn’t feel so awful. Small things but so needed.
It wasn’t until they started making sacrifices and I needed to accept they needed to make them in order for me to function again, that we ALL were happier in general. It’s not perfect but I was coming unglued over a 10 minute grocery store ride home most days. I couldn’t function is all I can say. I didn’t just “need help” like people would suggest. I needed my family to make some sacrifices too because I was empty, nothing left to give.
Blessings to you Kate ?
Wow there are some super judgey asshole comments here! I think we’re all doing the best we can and if you don’t have something nice and supportive to say, why even leave a comment?!? ?♀️
I don’t mean to come off judgey at all to Kate. However a person parents heir special needs child is fine by me. It’s a very difficult road. I was o my stating my own experience with emptiness, with borderline depression and how I was not coping with what I was given. This parenting journey is a long and complex road with a lot of twists and turns. When I sacrificed money to hire help it was a big change in my mental health. When my children sacrificed time with me so I could regain my footing , it changed my mood significantly. When I began to sacrifice my own time away from family/work to exercise it was then I began to cope better with the chaos that was always waiting for me.
This isn’t possible for everyone I know that. i couldn’t even leave the room without someone needing me to change a diaper, provide a snack, help with the darned tv remote! Personally I was drowning and if someone said one more time that I just “needed extra help” I was going to scream! Help wasn’t a viable option as I had no family or friends willing to step in and provide relief. But I could start sacrificing some money and time for myself to start functioning and enduring again.
No judgement here, I wanted to only share some of my darkest moments and how I continue to move through it. ?
I am a special ed teacher…..this girl is a saint!
I have witnessed autistic adults…..some make an amazing recovery.