3 Things I Wish I'd Known About Parenting a Child with SPD

I’m going to be honest with you: Five years ago, I had no clue.

Despite having graduate degrees in Education and Psychology and having worked with children for the better part of two decades, I’d never heard of sensory processing disorder until my older son, H, was diagnosed. Months of evaluations and treatments from both physical and occupational therapists came to one conclusion- sensory processing disorder was at the root of H’s developmental challenges. And I had one predominant feeling: Fear.

It was a classic reaction to the unknown. As writer H.P. Lovecraft put it, “the oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown.”

Fear and its sister, worry, dominated my first three years of parenthood. I worried about everything...

H’s difficulty self-regulating and its effect on his sleep: How will this affect his brain development?

His motor delays: Will he be impaired? Will he be able to play sports when he’s older? Will other kids make fun of him? They say motor development is correlated with higher level learning- does this mean he’ll have a learning disability? Will he struggle in school? Will he be able to go to college? Get a job?

His social/emotional delays: Will he be able to make friends? Will he be bullied? Will he be able to go to a regular school? Will he feel isolated and lonely?

His anxiety: Will he be unhappy? Will he struggle with depression? How will he view himself? Will he think something is “wrong” with him?

Underneath all these worries was fear. And underneath the fear was shame.
The fear was that my precious baby boy was not going to be ok. The shame was the belief that this was all my fault.

To my younger-mom-self and to all the moms out there who are parenting a child with sensory processing disorder and/or a child who has a diagnosis that feels scary, unknown, and hard to understand, here are three things I wish I’d known at the beginning of this journey...

1. Everything is going to be ok. Oh, how I wish I could have internalized this early on. It would have mitigated many sleepless nights, many tears, and many days spent utterly incapable of being present. It took being shaken to my core, hitting bottom, and experiencing a spiritual wake-up call to make the decision to exchange my fear for faith. Faith that, no matter what was happening with H, he, and I, would be ok.

Yes, he had developmental challenges that were scary and he continues to have challenges that, at times, make his life and mine more difficult. But, every year, things get easier. For an infant who was delayed in his gross motor skills, a toddler who began walking with a severe in-toe, and a child who has an over-responsive vestibular system which, early on, caused him to be fearful and cautious of movement, he is now an almost kindergartner who others describe as “very coordinated” and “athletic.”

For a toddler who was unable to attend his peers’ birthday parties without having a massive meltdown, he is now a child who’s the first one in the bounce house and the last one to want to go home. For an infant and toddler who couldn’t sleep longer than a two hour stretch, he’s now a child who consistently sleeps through the night. For a toddler who was fearful of other children and preferred to play by himself, he’s now a child who has a group of friends, goes on solo play dates, and is described as a “best friend” by two of his buddies.

He still struggles and sometimes his struggles still stir up fear. But, I’ve learned that no amount of worry is going to change H’s struggles. I’ve learned to let go of my worry and fear and trust that this is all part of his, and my, journey. I’ve learned that everything really will be ok.

2. It’s not your fault. Mom guilt is real and it’s intense. We moms blame ourselves for everything when it comes to our kids. Difficult birth? I should have done more Kegels. Colicky infant? Why didn’t I cut out dairy? Kid fell off the slide? I should have been standing closer. Kid got a cavity? Damnit, I knew those gummy vitamins were a bad idea. Child diagnosed with SPD? It must be because I have anxiety. Why didn’t I meditate more during my pregnancy? What the hell is wrong with me? And for god’s sakes, why didn’t I see the signs earlier?

If any of this is ringing a bell, I want you to take a deep breath and say out loud, It’s not my fault. Now, take a couple more deep breaths and let that guilt go.

You see, we moms are human. I mean, we do seem to possess some pretty amazing superpowers, but that aside, we’re still human. Which means we’re fallible. Every single last one of us. It’s just the way we’re made. There’s no possible way to get around our shortcomings and the mistakes we make as parents. The only thing we can do is learn from them, which, in my opinion, is the whole point anyways!

After H’s premature birth, I went into a full-on shame spiral, blaming and internally berating myself for not better managing the leftover anxiety from my infertility, for not catching the signs of my premature labor sooner, for H being breech, for my “failure” to go full-term. The shame continued into his infancy. I blamed myself for his colic, his difficulty self-regulating, his developmental delays, his social anxiety, and his massive meltdowns. In my mind, it was my fault he had sensory processing disorder and I had failed him as a mother. If I had been less anxious, if I could have just relaxed more during my pregnancy, stressed less, been a better version of myself, none of this would be happening.

Where did this shame come from and what was it all about? Vulnerability researcher and author Brene Brown describes shame as “the most powerful, master emotion” and defines it as “the fear that we’re not good enough.” After decades of research and thousands of interviews, Brown concluded that most of our suffering has roots in feelings of not being whole, not being worthy, not being enough.

In order to live our fullest lives, to feel whole and worthy, we must recognize and address the shame triggers we accumulated from our own childhood and begin the process of healing. None of us emerged from our childhood unscathed. We all have work to do in this area, and there’s nothing that will highlight just how much work needs to be done like becoming a parent!

When H was three-years-old, I vividly remember crying myself to sleep after a horrendous parenting day, feeling an incredible amount of sadness in the form of self-blame. We had just moved and H was having a difficult time with the transition. Everything was falling apart- his sleep, his behavior...my sleep, my behavior- and my worry and fear were through the roof. I woke up the next morning exhausted and that’s when it hit me- no amount of blaming myself was going to change what he was going through. It was time to stop blaming and start healing.

This realization completely shifted my perspective. I began to view my worries and fears as beacons pointing me straight to the feelings of shame that needed healing. I went to therapy, started journaling and meditating, did some “reparenting” work (I can’t recommend this more!), focused my attention on healing the parts of me that felt inadequate. I consciously worked on extending myself more grace and compassion and started questioning, instead of believing, my self-blaming thoughts.

If you’re caught in a mom-guilt induced shame spiral, blaming yourself for your child’s struggles, know that it is not your fault. You are whole, you are worthy, and you are enough. Your child is so lucky to have you.

3. This is a huge opportunity for growth. Sometimes all we need in order to decrease our suffering and get “unstuck” when we’re in a bad place is a little reframing. Once I started working on healing my shame and letting go of the self-blame, I was able to embrace the idea that everything was exactly as it should be.

Instead of viewing H's impaired sensory processing as something that needed “fixing,” I reframed his challenges as opportunities for growth. Yeah, yeah I know it sounds “woo woo,” but it truly shifted my experience and dramatically decreased my anxiety about his development.

Each of H’s meltdowns was an opportunity for me to practice my own self-regulation (not my strong point) and to increase my capacity for empathy. When he struggled in a social situation, it was an opportunity for me to practice tuning in and being present rather than getting swept away by fear and worry (have I mentioned that I’m a worry wart?!). When he struggled with motor milestones, it was an opportunity for me to let go of my expectations and work on accepting things that were out of my control (another area I struggle with).

Our kids are our teachers and they will most certainly bring to light whatever lessons we’ve yet to learn. The more we can reframe their challenges and focus on our own growth and healing, the more our children will thrive. When we trust that everything is exactly as it should be, our kids internalize that they are exactly as they should be, that they don’t need fixing, that they are whole, worthy and enough.

Realizing something is off with your child’s development can be extremely overwhelming and fear-inducing. It’s normal to feel scared and to be flooded with parenting-related anxiety. But, hear this: You don’t have to hold onto the fear. I held onto mine for too long, and I don’t want that for you. If you’re losing sleep over your child’s struggles, close your eyes, take some nice, long, deep breaths and repeat after me:

Everything is going to be ok, this is not my fault, and this is a huge opportunity for growth.

Where are you and your child in your journey? Are you struggling with fears related to a SPD diagnosis or other developmental challenges? What has been the hardest part about parenting a child with developmental challenges and what do you wish you’d known earlier? Leave a comment below, I’d love to hear from you.


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