Our Unique Grief: Parenting a Child with Special Needs
A couple of years ago I began a journey of getting to know my soul and healing a lot of wounds.
In that process, I realized that we, as parents of kids with special needs, carry chronic grief that other parents can’t relate to.
It has become my goal to talk about this grief so that other special needs parents can recognize it in themselves and work on their own healing.
I also hope that people who don’t have a child with special needs will listen and learn so they can be more understanding and empathetic to our lives.
Since we are just getting to know one another, I thought I’d better tell you a bit about me.
I have a husband and 3 daughters, ages 19, 15, and 11.
Our oldest daughter, Taylor, has several diagnoses, including autism, cerebral palsy, and epilepsy. Our middle daughter is typically developing. However, she does have severe anxiety. And our youngest is full of spunk and the spice of life!
With four years between each of our kids, I have always told people there is a reason they are spaced so far apart.
The early years were HARD. Taylor is significantly behind on everything in life. When she was little, she was in 3-4 therapies each week, plus a multitude of doctor appointments.
This phase of life is marked by tremendous grief that is pretty easy for everyone to recognize. It’s the grief of all the diagnoses and the loss of the vision and dreams we had for our lives, our families and our children before they were born.
This is where every fresh special needs parent is given the Welcome to Holland poem and learns to change the dreams they had for their child.
There is so much stress and so much grief in this phase.
Every time the little girls passed Taylor with a milestone, my heart ached with grief for her all over again. And then, I’d feel guilty for tainting their gains with grief…for letting my brain overshadow them with Taylor yet again. As if it wasn’t enough that her needs came first with everything every day.
This was, of course, an internal battle because there is too much shame around admitting this or saying it out loud to other people.
The Sweet Spot
We had a phase when the girls were about 4, 8, and 12 when I realized we were in our “sweet spot”.
I had read a blog post from a mom all about being in the “sweet spot”. It’s that time of life where your kids are out of diapers and more independent, but they still want to hug, snuggle and hold your hand.
At first, when I read that, it made me sad because our oldest daughter is not potty trained, she’s non-verbal, she needs assistance with everything. I thought I would never have the “sweet spot”. I would have to carry a diaper bag with us for the rest of my life.
I let that grief run through me. Then I realized that just like when she was little, our experience might be different, but not less.
I realized that although still in diapers, Taylor was doing good!
She was more regulated than she’d ever been. She was happy and doing well.
We were able, for the first time ever, to really go places together as a family. We went to events for special needs families, like sensory-friendly movies and specially planned carnivals. We went on wheelchair-friendly hikes and geocaching together. We were active as a family for the first time in over a decade. It was amazing. We were in our “sweet spot”.
Taylor hit puberty. And everything was off the table from that point forward.
Puberty wrecked her. And in the process, it wrecked me too.
She became so aggressive and dysregulated. She was ready to pop at any given moment and we began living on eggshells again.
We lived in that place of continual high anxiety. The place where you never know if she will sleep or be up all night. Unsure if she’ll give you a kiss or claw your eyes out. Not knowing if she’s in pain or exhausted and just crabby, with no idea what to do to help her.
It’s an awful place to live day after day.
This is a type of grief that is unique to special needs parents. This grief isn’t easily identified.
It is often mislabeled as “stress”.
This is because it happens through normal, everyday activities. It’s a part of our common daily lives.
It’s the little things that remind us we are different, that our child is different. It’s the reminders that their life isn’t like the lives of other kids their age.
Things that are stressful, so we miss the grief.
Things like how hard it is to get your child’s teeth brushed well. The focus is on the difficulty of the task, which is stressful. But the result is being left with a feeling of unidentified grief that you and your child have to go through this when others don’t.
After years of living on eggshells with chronic stress and grief, one day I just couldn’t do it anymore.
I was trying to change Taylor’s dirty diaper. She was aggressive and resisting me. This was very commonplace and so frustrating.
I was losing all my patience with her. So I left her safely where she was and went into the kitchen sobbing.
At this time in my life, my sister had died the year before and I was at the depths of depression and the height of anxiety.
So, on this day, when Taylor got aggressive with me, I couldn’t handle it at all.
I left her in her dirty diaper and crumpled into a heap on my kitchen floor sobbing.
Sadly, this scene was also commonplace. But the difference on this day was that I couldn’t get up. I had always gotten up before. I always got up. But not this time.
I called my husband, choking out the words through sobs. He came home from work, scooped me up off the floor and carried me to bed.
The grief over my sister had cracked wide open grief I didn’t know I had over Taylor.
A couple of months later, I went to a place in New Mexico that specializes in grief.
I did a lot of research and went to the ONLY place in the country that could give me what I needed.
I spent two weeks there, being nurtured and pampered, working through my grief and healing. I left there knowing that I had to make a lifestyle change if there was any hope to continue to feel the level of peace I felt then.
Because even way before I got so low, I was a stressed-out mess. My back was knotted up so tight it felt like a brick wall, I couldn’t focus, I couldn’t cope with Taylor’s hormonal aggression.
The Other Side
I spent two years implementing my self-care plan and making sustainable changes in my life.
It was during this time that I finally recognized the unique daily grief for what it was. That realization was a game changer.
Knowing those common occurrences were leaving me feeling grief and not just stress, I was able to be so much gentler with myself. I was able to give myself the grace I would give to any one of my girlfriends if she were grieving.
And now that I’m on the other side, I have more peace and calm within me.
I do specific things every day for myself – and these are little things, these are not big things. But I do them every day, for me.
I know first-hand that as a mom of a kid with special needs, you can make yourself a priority. You can take care of yourself. You can thrive and feel good.
And now I want to give that kind of support to other special needs parents. Because I know it is needed so desperately.
I hope this helps you start to recognize the grief in your life and motivates you to make some changes for your own mental health.
If you missed my last blog post, you can find it here. I lay out exactly how you can take care of yourself while you take care of your child with special needs. I explain how to make yourself a priority when your child needs so much. These things are the key to thriving in chronic stress and grief.
Be sure to subscribe to my blog so you don’t miss future articles.
I am also excited to announce that I have launched a podcast this week! It’s called Changing Your Dreams: Parenting a Child with Special Needs.
I will interview other parents to relate their stories of grief and transformation. I will also talk to field experts who can help us take care of ourselves.
You can find it on Spotify, Apple, or wherever you get your podcasts. Be sure to subscribe. I’d be so grateful if you also left a review! If you aren't familiar with podcasts or where to listen to them, you can get it here.