Inside: Being a special needs parent is stressful without a doubt, focusing on acceptance, self-compassion and gratitude can help parents seek out (and find) peace and joy amidst the daily struggles.
Out of nowhere, standing in the messy kitchen and holding a fresh poop diaper, I sat watching my kids run rampant with excitement playing nicely together (surely some small part of hell must be freezing over right?), and it dawned on me.
We had the honor of leading an amazing, ridiculous, chaotic, exhausting and spectacular family.
Granted, it had been a decent day, mostly free of meltdowns, sibling brawls and endless therapy appointments to get to, but nonetheless, it was one of those moments when things come into perspective.
As I’ve been on my special needs parenting journey for over seven years now, I can happily report that these moments of perspective come more frequently now.
There is not as much daily mental and emotional muck to wade through as there was in the early years of parenting, and there are a few crucial cornerstones I’ve learned along the way, both personally and professionally, that help with finding peace in what can seem like endless hurdles to overcome.
As you have likely already noticed, we humans don’t cope well when things don’t go our way. Especially when the unexpected events occur around our children and family, such significant parts of our lives. A piece of our heart breaks when we realize our child will likely face ongoing challenges throughout their life.
Reconciling our perception of what we thought things would be, with what actually is, is imperative in finding an emotionally healthy existence and being present for your child. In a nutshell, this process is known as grief.
Grief is a tricky business and can be described with many words, however, both ‘consistency’ and ‘predictability’ are not one of them. Many are familiar with the Kubler-Ross stages of grief (denial, anger, bargaining, depression and acceptance), which assert that we experience grief in distinct linear phases, and progression to the next stage depends on resolution of the stage prior. If only grief were that reliable.
The reality is, grief is highly personal and can’t be defined, nor can it be contained by time or space. It just is.
The emotions that lie within grief are universally human and present within us, whether we acknowledge them or not, but denial and avoidance of our pain will only serve to cause anxiety and depression. In short, we need to let ourselves feel our feelings.
Being in-tune with what emotions we are experiencing, and being intentional about working through them, is paramount to taking care of yourself as a special needs parent. Put down the bucket of ice cream, your smartphone, or whatever your own personal numbing device is, and sit with your feelings. Talk through them with a supportive loved one. Buy a pretty journal and pen and scribble down a few thoughts during your day.
After seven years, I am still reconciling my reality from my past expectations, just much less frequently now.
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Most are familiar with the phrase ‘dig deep’. Special needs parents may as well wear a sign on their forehead most days that reads “digging deep” as they tend to place super-human expectations on themselves.
“Could my child benefit from another therapy?” “Should we try another supplement?” “If I just read one more book…” Dr. Kristin Neff is known for coining the term ‘self-compassion’, meaning ‘to extend compassion to oneself in instances of perceived inadequacy, failure or general suffering.’ I don’t know about you, but I am pretty good at expecting myself to get it ALL done and do it PERFECTLY, which usually leads to me running around like a crazy chicken with a pit of anxiety in my stomach.
As special needs parents we know we should ‘love our child where they’re at’ , but what if we applied this same mantra to ourselves in our daily lives? What if we didn’t beat ourselves up over a forgotten school snack or a missed doctor’s appointment?
What if, instead, we spoke lovingly to ourselves in our thoughts and musings, inviting room for mistakes and actually allowing ourselves to be human?
If we worked harder to extend the same love and patience we do for others, for ourselves, self- compassion would reap tremendous benefits in all areas of our lives. Not only would we experience better moods and more fulfilling days, but through our modeling, we would give our children a head start in the practice of grace in imperfection.
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For the first few years after we had our daughter with special needs, I spent a lot of time feeling angry and helpless. “Why does my child have to suffer?” “It’s not fair that bad things happen to good people…” Do you tend to think more about the burdens parenthood has brought you, or the gifts?
Gratitude can be defined as affirming there is goodness in our lives and acknowledging where that goodness comes from. Dr. Robert Emmons has been studying gratitude for a decade, and has found that gratitude has the power to heal, energize and essentially change our lives. Doesn’t that almost sound like magic pill meant for special needs parents?
Consciously focusing on the good around us can help to heal our hearts and minds. It can help to heal past pain encountered by ourselves or our children, enabling us to move forward and not be bogged down by the past. Intentionally shifting into a grateful mindset throughout our day can move us into a place of hope, instead of helplessness, and energize us to be the best person and parent that we can be.
Turning our minds towards the positives we experience with our children will literally (neuroscience shows us it literally changes our brain wiring) lead us to feel happier and more satisfied in our role as a special needs parent. Now how flipping amazing is that? I for one am grateful for gratitude.
Find peace wherever you can.
As I sat in my kitchen that day reflecting, I was rudely interrupted by my toddler hurling a train car at my shin (and by the smell of the dirty diaper). In special needs parenthood (or parenthood in general), moments of perspective finding peace may seem fleeting.
However, luckily for us and our kids, the outlook of zen moments is bright if we are able to accept ourselves and our children as we are, be kind to ourselves day to day and find gratitude in both the small things and the large.
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