Coping with Negative Emotions as a Special Needs Parent

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A mom holding a special needs child.There’s a line that I often hear in my work as a psychotherapist for families of children classified as special needs. It’s a refrain that is always heavily loaded with grief, frustration, and anxiety, mixed with the deepest love that a parent can feel for a child. It is said in moments of despair as a kind of confession, and unwilling admission, full of guilt for being verbalized but resonant with truth:

“I wasn’t prepared for what I got.”

Parenting is one of the hardest jobs a person will ever be called to do, and it is rife with the terrible burdens of the unknown. What type of parent will I be? Do I have what it takes? Will I make a mistake? Every day is already filled with worries and plans and pre-planning for the plans you made before you even started to plan.

Fold into those fears the recognition that your child is suddenly not meeting that dreadful categorization of “milestones,” or something deeply instinctual within you tells you that something is off. The anxiety grows—confirmation that there is an issue to tend to and a LABEL for that can feel devastating. No one is ever ready to confront the unexpected.

Because of our fierce love for our children, we are devastated at the thought of potential suffering and struggle in their lives.

There is a multitude of emotions that flood you, and you experience them all by turns. You wish experiencing one emotion meant you won’t have to reencounter it, but there it is, on endless repeat. The terrible guilt you fought to conquer or the sadness at the challenges your child will face come back often as you guide them through the experiences that become their life.

Thankfully, those emotions are balanced with moments (MANY!) in which you feel gratitude at the attainment of a goal, easy enough for everyone else, but a mountain of some magnitude for your child. The struggles you bear witness to sometimes end in triumph, and you relish those moments, sharing in the joys of a hard-won goal. And through it all, relentlessly and unwaveringly, there is love.

But I want to highlight the human emotions that pop up because they slide insidiously into our thoughts. We quash them as fast as we can but then punish ourselves unceasingly for our perceived disloyalty. That self-directed punishment is wrapped up in all the guilt and internalized anger that goes with coping with the unexpected, and the result is round after round of distressing thoughts that take deep chunks out of our souls. It makes no sense, yet our vulnerable humanity moves us through that cycle time and again.

In our darkest moments, we compare. We look at other children and families and measure our efforts, often passing judgment on ourselves as lacking in some capacity. We are found wanting in our own eyes.

And then come the compensating behaviors. We find ourselves applying pressure, gentle or not-so-gentle, to generate “improvements” and then curse ourselves for the anxiety it produces. And in our weakest moments, perhaps we even employ shame in the guise of encouragement. Who hasn’t tried to motivate with a logic that only invariably highlights where the child has fallen short?

Am I trying to make you feel worse by dragging your deepest, darkest thoughts into the light? Not at all.

I would venture to say that these “traitorous” thoughts are a part of the aforementioned grief process and have a place in our progression towards the kind of acceptance that allows us to take the requisite deep breath, put our heads down to the wind, and do what needs to be done in the name of our children. How do we get to that place of moving forward if we don’t spend a little, just a little, time accepting the dark side of our humanity?

Sometimes we need to acknowledge that it hurts and feels terrible to vent the emotions that can keep us otherwise stuck. While we don’t want to live in that place forever, I would venture to say that it is okay to visit because those are genuine feelings that don’t stay hidden for long if we pretend they aren’t there. Have you ever known lava to stay underground forever? Does everything buried remain so? There’s a reason that psychoanalytic work hard to unearth what is repressed.

As mothers, there is a pressure to be the type of woman we see represented in the social media of others; shiny representations of perfect parenting that are all of the stereotypes with none of the edges. And thus comes more pressure to model perfection to our children, which adds additional strain when dealing with special needs.

Children can be put between such a rock and a hard place, wanting so badly to uphold the façade of perfection to the world so they can support their parents’ efforts, yet they are so cognizant of the disconnect. Is it any wonder that engenders anger and resentment in the child, passing back and forth between both? Perhaps it is more beneficial to acknowledge that, like your child, you have moments where you, too, wish it were easy. We can ask them, “Does it seem simple for your friend? Yes, it does. Do we both hope it could be that way for you? Of course, we do!

We’re human. We all get envious and jealous. It hurts so much.” And then SIT WITH THAT for a moment (or ten) alongside them—model grieving instead of perfection. Be there to absorb what they have to give because they feel the pressure too. Then, show them how to pick themselves up, breathe, and gather themselves to meet their challenges because we must, if we’re to avoid taking up real estate in that painful place. Be mindful that the feelings will come again and that you’ll go through the stages of grief and acceptance repeatedly.  

That will be the challenge of living an authentic life. But I promise you that there is tremendous strength in that, and it won’t take forever to get to it. They will get to where they were meant to be (as will you), and it will be the right place for you both because you’re starting from middle ground, which is honest territory.

And lastly, who am I to make such claims? Why I am the parent of a special needs child.

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May Hwa-Jones was born in Brooklyn and grew up in Queens. She interned at Rolling Stone Magazine and Elle Magazine in college, and was a freelance editorial assistant at Family Life Magazine. With a Bachelor’s Degree from NYU and a Master’s Degree from Stanford University in Literature, May explored editorial life in NYC, but moved towards a teaching career instead, which led to a teaching certification in secondary education and the eventual achievement of a second Master’s Degree in Social Work from the University of Denver. As a licensed clinical social worker, May has practiced psychotherapy for nearly seventeen years in multiple settings, from substance abuse clinics in hospitals to community mental health centers, finally finding her passion working with families in a school for severely emotionally disabled children in Westchester County. She is married to a self-proclaimed red neck from Colorado and has three children, who are the beloved centers of chaos in her life. Formerly a ballet dancer and musician for over 20 years, she now does Zumba to keep her joints from locking up and is an avid cheer-soccer-tae kwon do-music-art-dance mom. Her husband regularly begs her to stop volunteering to run more activities, but she never listens to red necks.

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